EXPLORING A CHILD’S DEVELOPMENTAL DIAGNOSIS: AN
INTERPRETIVE DESCRIPTION OF PARENTS’ EXPERIENCES IN
NORTHERN BRITISH COLUMBIA
by
Tammy Pearson
BA., RSW., MSW

DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY
IN
SCHOOL OF HEALTH SCIENCES

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
April 2017
© Tammy Pearson, 2017

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ABSTRACT
Background: Full parental understanding of a child’s diagnosis of a developmental
disability is critical to be able to ensure the best health outcome for their child. Yet factors
that parents perceive as influencing their comprehension during the final diagnostic meeting
have not been well identified. Method: As part of a qualitative study using interpretive
description, 17 parents were interviewed on the basis of their having been referred to, and for
having received a child’s developmental diagnosis from a Complex Developmental
Behavioural multidisciplinary team located in northern British Columbia. Semi-structured
interviews focused on the factors that played a role in facilitating or impeding the parents’
understanding of their child’s diagnosis, and on the identification of factors that influenced
the way in which the child’s clinical recommendations were pursued. The interviews were
recorded and transcribed. Data analysis was informed by Braun and Clarke’s six phases of
thematic analysis. Results: Three overarching themes with twelve subthemes emerged from
parents’ reported experiences of receiving their child’s developmental diagnosis. The three
overarching themes and twelve subthemes included (a) clinical encounter (including the
subthemes structural considerations, professional diversity and new insights, questions
regarding the assessment process, validation, and expectations); (b) the manner of the
delivery of the diagnosis (impact—emotional and impact on parenting practices,
professionalism, professional language, and quantity of information); (c) Where do we go
from here? (post disclosure, the final evaluation report, and recommendations). The parents’
accounts established and clarified the positive and negative parental determinants that aided
or challenged their ability to understand their child’s developmental diagnosis and identified
the influence this had when it came to implementing the clinical recommendations.

iii
Conclusions: Parents reported several factors played a role in facilitating or impeding their
ability to comprehend their child’s diagnosis. The risks and benefits associated with the
child’s recommendations extend beyond the medical exchange that occurred at the family
disclosure meeting. The parents’ narratives provided insight into a complex phenomenon.

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TABLE OF CONTENTS

Abstract ................................................................................................................................ ii
Table of Contents ............................................................................................................... iv
List of Tables ..................................................................................................................... vii
Acknowledgements .......................................................................................................... viii
Dedication ........................................................................................................................... ix
Chapter 1

Introduction.................................................................................................... 1

Informing this Research ................................................................................................. 1
Clinical Problem ............................................................................................................ 3
Purpose of the Research................................................................................................. 5
Research Question ......................................................................................................... 5
Disciplinary Framework—Theoretical Location ........................................................... 6
Assumptions .................................................................................................................. 8
Definition of Terms ....................................................................................................... 8
Summary ...................................................................................................................... 11
Chapter 2

Literature Review ........................................................................................ 13

Shifts in Professional Practice ..................................................................................... 14
Formal Diagnostic Process .......................................................................................... 19
Gender ......................................................................................................................... 21
Length of Diagnostic Assessment ............................................................................... 23
Multidisciplinary Team ............................................................................................... 25
Professional Communication and Parental Prerequisites ............................................ 27
Communication Techniques ........................................................................................ 32
Formal Education......................................................................................................... 35
Mnemonic Approaches ................................................................................................ 38
Efficacy of Guidelines ................................................................................................. 41
Parental Experience and Impact .................................................................................. 42
Concepts of Cultural Excellence ................................................................................. 49

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Cultural Safety ............................................................................................................. 50
Cultural Competence ................................................................................................... 53
Cross-Cultural Practice ................................................................................................ 54
Summary ...................................................................................................................... 57
Chapter 3

Disciplinary Framework and Methodological Approach ........................ 59

Social Work Discipline ................................................................................................ 59
Practice Wisdom .......................................................................................................... 61
Social Work and Epistemology ................................................................................... 62
Social Constructionism ................................................................................................ 63
Research Design ......................................................................................................... 65
Ethical Considerations ................................................................................................. 70
Confidentiality ...................................................................................................... 71
Role of the Researcher ................................................................................................. 73
Recruitment Strategies.......................................................................................... 74
Details of Data Collection .................................................................................... 77
Interview Protocol ................................................................................................ 78
Interview Procedures ............................................................................................ 79
Data Analysis........................................................................................................ 80
Verification Strategies ................................................................................................. 84
Peer Review .......................................................................................................... 87
Member Checking ................................................................................................ 87
Reflexivity ............................................................................................................ 88
Summary ...................................................................................................................... 90
Chapter 4

Findings ........................................................................................................ 91

Introduction.................................................................................................................. 91
Snapshot of Data Analysis.................................................................................... 92
The Participants .................................................................................................... 93
Overall Parental Experiences of their Child’s Developmental Diagnosis ................... 95
Overarching Theme 1: Clinical Encounters ................................................................ 95
Subtheme 1: Structural Considerations ................................................................ 97
Subtheme 2: Professional Diversity and New Insights ...................................... 108

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Subtheme 3: Questions Regarding the Assessment Process .............................. 116
Subtheme 4: Validation ...................................................................................... 121
Subtheme 5: Expectations .................................................................................. 125
Overarching Theme 2: The Manner of the Delivery of the Diagnosis ...................... 129
Subtheme 1: Impact (Emotional Impact) ........................................................... 130
Impact on Parenting Practices ............................................................................ 134
Subtheme 2: Professionalism ............................................................................. 137
Subtheme 3: Professional Language .................................................................. 139
Subtheme 4: Quantity of Information................................................................. 141
Overarching Theme 3: Where Do We Go From Here? ............................................. 144
Subtheme 1: Post Disclosure .............................................................................. 144
Subtheme 2: The Final Evaluation Report ......................................................... 147
Subtheme 3: Recommendations ......................................................................... 150
Summary .................................................................................................................... 156
Chapter 5

Discussion ................................................................................................... 158

Clinical Encounters .................................................................................................... 159
The Manner of the Delivery of the Diagnosis ........................................................... 163
Where Do We Go From Here? .................................................................................. 169
Summary .................................................................................................................... 172
Practice Considerations ............................................................................................. 173
Limitations of the Study ............................................................................................ 178
Future Research ......................................................................................................... 178
Conclusion ................................................................................................................. 179
Reflections ................................................................................................................. 181
References ........................................................................................................................ 183
Appendix A: Interview guide ......................................................................................... 205
Appendix B: Information Letter and Consent Form .................................................. 207
Appendix C: Member Checking Letter ........................................................................ 211
Appendix D: Ethics Board Approval ............................................................................ 212

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LIST OF TABLES

Table 1 Demographics of Participants in Terms of Regional Location, Gender, Ethnicity,
and Biological or Adoptive Parent .......................................................................... 94
Table 2 Themes and Sub-themes Arising from the Interviews ............................................ 156
Table 3 Protective Factors that Facilitate and Risk Factors that Impede Parental
Understanding........................................................................................................ 168
Table 4 Protective Factors that Facilitate and Risk Factors that Influenced Parents’
Implementation of Clinical Recommendations ...................................................... 172
Table 5 Practice Considerations for Delivering a Child’s Developmental Diagnosis with
Parents ................................................................................................................... 177

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ACKNOWLEDGEMENTS
First and foremost, I want to express my deepest appreciation to the parents who
participated in this study. They graciously gave their time, and shared their remarkable
stories. Without their commitment this research would not be possible. Secondly, I would
like to extend my sincere gratitude to the members of my dissertation committee, Drs.
Shannon Wagner, Glen Schmidt, Margo Greenwood, and Gerard Bellefeuille for their
guidance and support, as I will forever be grateful. A special note of appreciation is extended
to my PhD supervisor, Dr. Shannon Wagner, whose guidance was vital for the development
and accomplishment of my dissertation. I would like to extend a special thanks to my friend,
Marcela Rojas, for her patience, advice, support, and encouragement when I needed it the
most. I also thank my friend and colleague, Dr. Indrani Margolin, for being one of my
biggest cheerleaders. I express a heartfelt thank you to my amazing son, my family, and my
friends for their ongoing love and support.

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DEDICATION
I dedicate this dissertation to my son, Matthew Stubley. My son was one of the major
motivators for my pursuit of a PhD. I wanted to ensure that I was able to provide a quality
life for my son in all areas of his life. At times, balancing a PhD and parenting posed a
challenge but, given that I co-parent with his father, I was able to manage. I began my PhD
journey when my son was 2 years old—and he now is 9 years old.

1
Chapter 1

Introduction

This dissertation, explored the experiences of parents that received a comprehensive
diagnostic assessment of their child by one of the Complex Developmental Behavioural
Conditions (CDBC) multidisciplinary teams located across northern British Columbia. The
parental experience of understanding a child’s diagnostic assessment is not well documented
in the literature. Although it is not appropriate to form generalizations from the data depicted
in my study, this important research allows for the generation of new ideas and can inform
clinical practice and create innovative practice techniques when delivering diagnostic
findings, which, in turn, may potentially improve outcomes for children and families. My
chosen methodology of “interpretive description draws upon the philosophical structure of
applied disciplinary knowledge for its interior logic and design decisions” (Thorne, 2013, p.
295). Chapter 1 includes my personal and disciplinary knowledge that capitalizes on the
angle of vision that the discipline of social work brings to an applied methodological
approach in a healthcare setting. In addition, the purpose of my research, the significance of
the study, the guidance of social work epistemology and its limitations; outlines the research
questions and provides definitions of terms and an outline of chapters that follow.
Informing this Research
For the past decade, I have worked in a variety of clinical capacities where I
interacted with children and families in different settings. I had countless conversations with
families who endured frustration and conflict regarding their level of understanding of what
was shared by a professional that was involved in some capacity in their life. It was noted by
the parent that the professional’s style of delivery (communication) often left the parent in a

2
state of confusion, as there was an apparent lack of insight into what the parent understood
about their particular situation. My professional role as a Senior Practice Analyst (quality
assurance) with the Ministry of Children and Family Development provided the opportunity
to gain clinical wisdom into the professional interactions with families in the practice of child
welfare. I was often perplexed by the discrepancies in the understandings held, on the one
hand by the social worker and on the other hand, by the parents. Interviews with child
protection social workers and families showed that parents lacked an understanding of the
content that was being delivered by the social worker. Statements of helplessness and
expressions of misunderstanding were not uncommon to hear from the family (parent).
Parents reported that the involvement of the child welfare system triggered anxiety and
stress, which, in turn, clouded their ability to fully understand the message being delivered.
On a personal level, I was diagnosed with cancer in January 2007. I experienced the
challenges involved when I first heard my diagnosis and was faced with trying to make sense
of the disease and the unique treatment journey associated with my particular type of cancer.
There was no doubt that the professional delivery of my diagnosis coupled with the anxiety
of hearing bad news impacted my ability to fully comprehend the diagnosis. My professional
practice discipline—social work—coupled with my personal experience has fuelled my
interest in exploring this clinical problem in a different context—a health setting. Through
this research journey, my goal was to expand the understanding of this experiential
phenomenon and provide practice considerations for health professionals tasked with the
delivery of a diagnosis. Specifically, the parental experiences of hearing a child’s
developmental diagnosis by a multidisciplinary team (health professionals) that specializes in
comprehensive diagnostic assessments. Insight from the parent’s perspective produced

3
clinical strategies for clinicians to enhance parental understanding within the delivery of a
child’s diagnostic assessment.
Clinical Problem
Approximately 16% of children experience a developmental issue in the course of
their childhood (Levy, 2011; WHO, 2001) and it has been reported that there appears to be a
recent spike in the incidence of neurodevelopmental disorders in children resulting in
emotional and behavioural problems (Blanchard, Gurka, & Blackman, 2006; Brauner &
Stephens, 2006; Fombonne, 2009). Consequently, families often embark on a professional
journey to receive a developmental diagnostic assessment for their child. Providing a clinical
diagnostic assessment for children and youth with complex developmental and behavioural
disabilities—and securing the involvement and support needed for and from their families—
is often a complex task. Hence, in the area of autism, Chudley et al. (2005) strongly
recommend that a neurodevelopmental diagnosis be performed by a multidisciplinary team
of health professionals given the intricacies associated with clinical impairment.
There is no doubt that the clinical diagnostic disclosure is a pivotal time for parents
(Tattersall & Young, 2006) as it provides information about their child and allows families to
make informed decisions about the various domains of their child’s life. The manner in
which health professionals communicate a child’s developmental diagnosis has been shown
to influence the parent in a number of ways. The disclosure of the clinical diagnostic
assessment has a dramatic effect on how and whether parents accept and manage their child’s
developmental diagnosis (Taanila, 2002). Furthermore, depending on the way in which the
information is professionally disclosed, the emotional effect on the parents can be mediated

4
in ways that influence the parents’ views of their child, either positively or negatively
(Bartolo, 2002).
A common theme throughout the related literature is a widespread dissatisfaction on
the part of parents with respect to the way their child’s developmental diagnosis was
professionally communicated (Cunningham, Morgan, & McGucken, 1984; Edelstein &
Strydom, 1981; Liptak et al., 2006; McKay & Hensey, 1990; O’Sullivan, Mahoney, &
Robinson, 1992; Pearson, Simms, Ainsworth, & Hill, 1999; Quine & Pahl, 1987; Sloper &
Turner, 1993). Parental satisfaction is an important determinant for their child’s plan and
future well-being (Bartolo, 2002).
Parents who received devastating news in a blunt manner about their children’s health
reported that the news gave rise to feelings of denial, blame, grief, confusion, anger, and pain
(Cottrell & Summers, 1990). However, if it is executed skillfully, the professional delivery
of the diagnostic assessment findings can facilitate parental understanding of their child’s
needs (Bartolo, 2002). Several researchers examined various perspectives during and after
the comprehensive diagnostic assessment process. However, very little has been published
on the determinants of parental understanding in the context of delivering a child’s
developmental diagnosis and the influence this has on the parent’s ability to implement the
clinical recommendations. This poses a concern given that parental adherence to clinical
recommendations is crucial to positive outcomes for children (Hock, Kinsman, & Ortaglia,
2015). This apparent gap in clinical practice knowledge provides the foundational rationale
for my research and the study aims.

5
Purpose of the Research
The goal of my research was to examine and explore the experience of parents who
received a comprehensive developmental diagnostic assessment for the purpose of informing
clinical practice and future research, and guidelines designed to improve the professional
delivery of final diagnostic assessments, all intended to improve health outcomes for children
and families.
Research Question
The overarching research question of this study is: What is the experience of parents
who received a comprehensive diagnostic assessment by one of the Complex Developmental
Behavioural Conditions (CDBC) multidisciplinary teams across northern British Columbia?
The specific aims of this question were to:
1. reveal factors that played a role in facilitating or impeding the parents’
understanding of their child’s developmental diagnostic assessment, and
2. identify factors that influenced the implementation of the child’s clinical
recommendations.

6
My research explored the experiences of parents who received a comprehensive
diagnostic assessment of their child by one of the CDBC multidisciplinary teams in northern
British Columbia. The CDBC teams are situated within a larger healthcare system—
Northern Health—that serves residents across northern British Columbia. Northern British
Columbia covers a large geographical area encompassing a number of rural areas which
include families from diverse cultures. Across the northern region seventeen parents
participated in my research. The families that received a diagnostic assessment of their child
from their respective CDBC multidisciplinary team were residents of Prince George,
Quesnel, Vanderhoof, and Burns Lake.
Specifically, my study revealed factors that played a role in facilitating or impeding
parental understanding of their child’s clinical diagnostic assessment disclosed at the final
family meeting and identified factors that influenced the way in which the clinical
recommendations were implemented following the delivery of the diagnosis.
Disciplinary Framework—Theoretical Location
The conventional qualitative approaches to inquiry (phenomenology, grounded
theory, narrative, ethnography, case study) dictate that a study must be firmly positioned
within a theoretical framework (Thorne, 2014). It was common for nursing scholars to
subscribe to one of the aforementioned qualitative approaches despite concerns related to the
theoretical constraints associated with the specified methodological choice (Morse, 1989;
Thorne, 2008). Thorne, Stephens, and Truant (2016) claimed that the adherence to an
external theoretical framework compromised the logical integrity of a nursing enterprise, as
the findings generated had minimal impact on the application to practice. As such,
interpretive description was conceived and recognized as an applied qualitative methodology

7
derived from nursing epistemology that borrows the best technique from conventional social
science methods in the absence of the external theoretical constraint (Thorne, 2013). Thorne
et al. (2016) argue that the “intellectual underpinnings of an applied discipline can provide an
effective framework where qualitative technique can be aligned” (p. 452).
In preparation for writing my dissertation, I read a wide range of scholarly books and
professional discipline publications, which prompted a great deal of critical reflection and
confusion as I located a theoretical framework that aligned best with my research ideas—
both academically and professionally. I achieved a great sense of clarity and methodological
direction when I became engaged in the application of interpretive description. Upon
examination, it was clear that this methodology was well suited for a clinical setting that
sought to generate knowledge relevant for a particular context. For example, Hunt (2009)
conducted an inquiry into the moral experiences of clinicians performing humanitarian work
by way of interpretive description. In addition, Buissink-Smith and McIntosh (1999)
executed an interpretive description design in the area of tourism and hospitality.
A number of theoretical approaches would have described the complexities involved
in my study. However, it was my aim to move beyond description of the parental
experiences and absorb the intricate factors that played a vital role in shaping the parental
experiences—providing insight that informed professional practice in a health context.
Based on the similarities of practice between the two applied disciplines of social work and
nursing in a healthcare setting (Holliman, Dziegielewski, & Teare, 2003), I recognized the
profound effect that my discipline knowledge played in offering a solid framework that
guided my applied qualitative inquiry. In Chapter 3, I demonstrate a clear and logical

8
pathway describing social work’s disciplinary epistemology, influenced by social
constructionism, to defend and justify my methodological integrity.
Assumptions
Interpretive description “explicitly recognises and capitalises on the researcher as the
instrument” (Thorne, 2008, p. 64). In other words, the researcher’s chosen procedures and
the rationale that drives the research trajectory play a significant role in moulding the
inherent features of one’s inquiry (Thorne, 2008). The following assumptions were made in
reference to my study:
1. Parents of children who received a developmental diagnosis by one of the
multidisciplinary teams in northern British Columbia shared what they believed to be the
most pertinent and relevant information related to their experience.
2. Parents of children who went through the comprehensive diagnostic assessment
process willingly participated in my study as they were genuinely interested in sharing their
experiences to enhance the delivery style of the multidisciplinary team to ultimately ensure
that future families exit the family meeting with a solid understanding of their child’s
diagnostic finding.
3. Receiving their child’s diagnosis by way of a multidisciplinary team provided the
parents with a broader understanding of their child’s overall functioning, which lead to a shift
in parental practices.
Definition of Terms
The operational definitions for the terms used in this study are as follows:

9
Bad News: Bad news has recently been defined in the medical literature as
“pertaining to situations where there is either a feeling of no hope, a threat to a
person’s mental or physical well-being, a risk of upsetting a traditional lifestyle, or
where a message is given which conveys to an individual fewer choices in his or her
life” (Bor, Miller, Goldman, & Scher, 1993). Ptacek and Eberhardt (1996) define bad
news as news that “results in a cognitive, behavioral or emotional deficit in the person
receiving the news that persists for some time after the news is received” (p. 496).
Martis and Westhues (2013) suggest that other possible distinctions of bad news
would transpire if health researchers investigated this topic in numerous nations,
ethnicities, and professional settings.
Complex Developmental Behavioural Conditions: Children and youth who have
significant difficulties in multiple areas of function including development and
learning, mental health, and adaptive and social skills. The common diagnoses
delivered to families by the CDBC teams include but are not limited to the following:
Fetal Alcohol Spectrum Disorder (FASD), Attention Deficit Hyperactivity Disorder
(ADHD), Intellectual Disability, Learning Disability, Depression, impairments in
motor control, and other developmental disorders. In principle, children and youth
who have biomarkers such as substance exposure, dysmorphic features, and growth
retardation, as well as significant difficulties in multiple areas of function, including
development and learning, mental health, and adaptive and social skills (Northern
Health a, n.d.).
Family Meeting (final disclosure): Upon completion of the comprehensive
assessment, the multidisciplinary team meets with the family to explain results,

10
provide diagnoses, make recommendations, and answer questions (Northern Health a,
n.d.).
Multidisciplinary Assessment Team: A team that completes a comprehensive
diagnostic assessment and is comprised of the following professionals: a pediatrician,
who is a medical doctor trained to diagnose and manage the special needs of children
and adolescents; a psychologist, who assesses a child’s strengths and weaknesses
across a number of developmental areas such as cognitive abilities, academic
achievement, attention, memory, planning, problem solving, personal care, social
skills, and mental health concerns; a speech language pathologist, who assesses a
child’s ability to understand spoken language, to speak to others using words,
sentences, explanations, and narrative reporting, to use appropriate gestures, body
language and facial expressions, and to manage the communication demands of social
situations; and an occupational therapist, who evaluates a child’s fine motor skills,
hand-eye coordination, and functioning in daily life (Northern Health a, n.d.).
Parent/Parenthood: An individual who begets and/or brings forth an offspring
(father, mother); a person who raises and cares for a child; the state of being a mother
or father (“Parent,” 2008).
Patient- and Family-Centred Care (PFCC): Patient- and family-centred care is an
approach to the planning, delivery, and evaluation of healthcare that is grounded in
mutually beneficial partnerships among healthcare providers, patients, and families. It
redefines the relationships in healthcare. Patient- and family-centred practitioners
recognize the vital role that families play in ensuring the health and well-being of

11
infants, children, adolescents, and family members of all ages. They acknowledge
that emotional, social, and developmental supports are integral components of
healthcare. They promote the health and well-being of individuals and families and
restore dignity and control to them. Patient- and family-centred care is an approach to
healthcare that shapes policies, programs, facility design, and staff day-to-day
interactions. It leads to better health outcomes, wiser allocation of resources, and
greater patient and family satisfaction (Institute for Patient- and Family-Centered
Care, n.d.).
Written Report: Subsequent to the family meeting, the family receives a report that
highlights the assessment results and diagnoses and outlines recommendations for
interventions unique to the child.
Summary
Chapter 1 provided a brief introduction to my research study, which included my
personal experience, coupled with my former career in child welfare practice. Subsequent
reading of the academic literature allowed me to frame the research problem, purpose,
significance, theoretical framework, and the overall research questions.
Chapter 2 provides a review of the literature as it relates to parental experiences of
receiving a child’s diagnosis. In Chapter 3, I describe the intellectual underpinnings of social
work knowledge base and the influence of social constructionism as an effective disciplinary
framework coupled with the applied health research methodology executed for my research.
In Chapter 4 I discuss the findings generated by the research, and in Chapter 5 I discuss the
interpretation and relevance of the research with respect to the experiences of parents whose
children received a comprehensive diagnostic assessment by way of one of the CDBC

12
multidisciplinary teams. In Chapter 5 I also discuss how the received diagnosis influenced
the parents’ implementation of the recommendations that followed the diagnosis. In Chapter
5 I also consider future directions for research.

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Chapter 2

Literature Review

For many individuals, becoming a parent and raising a family is a lifelong aspiration.
Despite the common role that parents share in society, the notion of parenting, according to
Hoghughi and Speight (1998), is nonetheless challenging to delineate. They write that “to
parent” is an active verb denoting positive activities undertaken by parent figures with
respect to children: “Although the noun ‘parent’ usually implies a natural or biological
parent, it should be stressed that ‘good enough’ and indeed ‘super’ parenting can be delivered
by non-biological parent figures” (Hoghughi & Speight, 1998, p. 294). In the absence of any
complications, raising a child can be a difficult but rewarding task. The chance that a child
may develop a disease or encounter developmental delays heightens the challenge of child
rearing. Research looking at parenting a child with a disability shows that stress is
considerably higher for these parents compared to the normal stress felt by parents with
typically developed children (Ritzema & Sladeczek, 2011).
There are many reasons why people seek a medical explanation for developmental
disabilities, and questions are often related to identifying whether the disability has been
caused by an infection or is the outcome of other health-related complications. Gillman,
Heyman, and Swain (2000) found that parents of children with disabilities sought a diagnosis
on the basis of their belief that an assessment of their child’s symptoms would induce
treatment, intervention, and social support, which would in turn prompt an enriched life for
both the child and the family.
In this chapter, I will consider a variety of factors associated with the delivery of a
child’s developmental diagnosis within the medical setting, including shifts in professional
practice, the diagnostic process, the role of the multidisciplinary teams, professional

14
communication and parental perquisites, communication techniques, formal education,
mnemonic approaches, efficacy of guidelines, parental experiences, impact of a child’s
diagnosis on parents, concepts of cultural excellence, followed by a summary.
Shifts in Professional Practice
Individuals with disabilities have been detested, excluded, and victimized in our
society for many centuries (Mackelprang & Salsgiver, 1996). Public reaction towards
individuals with a disability was often contingent on cultural belief systems. For example,
ancient tribes believed that people with disabilities were possessed by evil spirits (Albrecht,
1992). Mackelprang and Salsgiver (1996) relate instances where disabled individuals were
subject to extremely intrusive measures in the attempt to eradicate the devil from their soul.
They also note that in the past, society viewed a child with a disability as an imperfection, an
impediment to a flawless world.
Historically, according to Ferguson (2002), professional perspectives aligned with the
views of society in general—medical professionals were shocked when a child was born with
a disability, and this, in their eyes, negated all other aspects of the child; practitioners saw
disability not only as permanent but also as a catastrophic outcome. Casstevens (2010) noted
that the symptoms of a disease were the main focus—to the exclusion of all other
perspectives. Engel (1977) identified this way of looking at disorders as the “biomedical
model” given its basis in solely biological factors to the exclusion of the social, behavioural,
and psychological aspects of disease (p. 130). Similarly, Engel (1980) notes that this model
also gave no consideration to the patient’s qualities as an individual or the role that family
and culture play in the life of the individual. One historic outcome of this, is that parents
took measures to conceal their disabled child by either secluding them in their home or

15
placing them in an institution, actions that were often influenced by the recommendation of
the professionals involved in their child’s diagnosis (Mackelprang & Salsgiver, 1996).
Ferguson (2002) notes that, in the early 1900s, the moral blame for most childhood
disabilities was assigned to the parents (Ferguson, 2002). In the 1970s, a mother giving birth
to a disabled child was often riddled with guilt and shame (Hedderly, Baird, & McConachie,
2003). As a result, mothers were known to question all the actions they took in the course of
the pregnancy as well as any practices they felt might have contributed to their child’s
disability. As time progressed, a number of parents described their experiences of having a
child with a disability as constructive, as the families grew and adapted in positive ways. For
example, coping strategies were developed, there was stronger congruence among family
members, and families blossomed in the realm of their religious beliefs (Ferguson, 2002). In
addition, in recent discoveries regarding the plasticity of the brain, neuroscience has come to
recognize the importance of psychological and social influences in the life of an individual
(Froggett & Richards, 2002).
The narrow historical scope associated with the biomedical model has prompted
many researchers to formulate new paradigms and clinical approaches that clinicians can use
during the professional-client encounter. Specifically, at the practical level the
biopsychosocial model (Engel, 1980) and the patient- and family-centred care (PFCC)
approaches (Institute of Medicine, 2001) are two pathways that respect and value the role a
patient’s personal journey plays in the development of a diagnosis (Borrell-Carrió, Suchman,
& Epstein, 2004).
In recent years, there have been various strategic initiatives implemented at the
several levels of government focused on leading change to better meet the needs of families

16
and children with developmental disabilities. For example, at the national level in 2007,
Canada became a signatory to the UN Convention on the Rights of Persons with Disabilities,
an international treaty that recognizes and works to protect the rights of individuals with
disabilities, and in 2010, Canada ratified the Convention (Collin, 2012). At the international
level, the World Health Organization (WHO) (2001) published the International
Classification of Functioning, Disability and Health (ICF), a document that superseded the
1980 classification of “impairment” and “handicaps.” In 2012, Canada joined countries
around the world in marking the 20th anniversary of the International Day of Persons with
Disabilities. Furthermore, in 2001 the American Institute of Medicine (IOM) identified
“Family- and Patient-Centered Care” (FPCC) as one of the six pillars upholding the delivery
of quality care.
In recent years, many healthcare organizations nationally and internationally have
implemented the PFCC approach with the intention of providing the most efficient healthcare
services. For example, Northern Health in Prince George, BC noted in their 2015/162017/18 service plan that the organization is committed to ongoing quality improvement by
way of incorporating PFCC (Northern Health c, n.d.). This approach is seen as a holistic
practice, one that, according to Boykins (2014), encompasses a patient’s cultural traditions,
personal preferences, needs, and beliefs. PFCC has been identified as a system of care that
embodies a number of features to promote quality care and positive outcomes for both the
child and the family (Lewin, Skea, Entwistle, Zwarenstein, & Dick, 2001; Oates, Weston, &
Jordan, 2000). These include: (a) shared control of the consultation, decisions about
interventions or management of the health problems with the patient, and/or (b) a focus in the

17
consultation on the patient as a whole person who has individual preferences situated within
social contexts (Lewin et al., 2001, p. 4).
In February of 2012, the American Academy of Pediatrics released a policy statement
entitled “Patient- and Family-Centered Care and the Pediatrician’s Role” (Institute, 2012).
The policy statement declared the importance of incorporating PFCC in clinical decisionmaking in order to encourage patients and their families to collaborate with healthcare
professionals and/or healthcare team members in all aspects of care and allowing them to
participate at the level they choose. These progressive shifts have challenged the historical
underpinnings of the medical model and offer an alternative to the restrictive dominant
medical model. These shifts are reflected in the changing discourse in healthcare where, for
example, the PFCC framework emphasizes that the professional focus should be on the
individual’s experiences with illnesses and/or disability (MacKean, Thurston, & Scott, 2005).
Where traditionally, according to Teutsch (2003), the client-provider relationship in the
clinical setting was authoritarian and did not generally take into account the client’s
perspective, communication by medical practitioners has shifted from this authoritative
model to a collaborative shared decision-making model (Légaré & Witteman, 2013).
Kisler and McConachie (2010) argue for combining the medical model with one of
social inclusion when presenting a diagnosis and emphasize that this is fundamental so that
professionals can support families effectively. According to Smith and Carey (2013), the
PFCC approach expects professionals to use their clinical skills to engage the patient and
family in the development of a plan, an approach that is especially important in healthcare
settings that involve the care of a child. Ziring et al. (1999) question whether this reflects the
recognition that, with more children facing persistent and escalating complex developmental

18
problems, there is a necessity to bridge the gap between the traditional medical model and the
child healthcare providers and families. Lawlor and Mattingly (1998) emphasize that a PFCC
approach is the best way to address these gaps and the most appropriate practice modality in
child healthcare settings.
Davis, Schoenbaum, and Audet (2005) note that there is overall agreement among
professionals about what PFCC means, but that little is known about the qualities or
characteristics of this kind of care that families consider valuable. They propose that “superb
access to care” should be one of the core characteristics of quality care, allowing patients and
their families to experience “ease of making an appointment; [the] ability . . . to select the
day and time of their appointment themselves; timely appointments, and short waiting time in
the office” (Davis, Schoenbaum, & Audet, 2005, p. 954). Mead and Bower (2000) note that
over the last three decades, a great deal of research has encouraged a PFCC approach in the
medical setting, and Smith and Carey (2013) confirm that many professionals have chosen to
adopt the PFCC planning strategies for clients with complex needs in the hope of improving
their quality of life.
Clinical Practice Approach
The Institute for Patient- and Family-Centered Care, an American health
organization, is based on the understanding that a child’s family provides the primary source
of care and support for the child. This approach to care recognizes that the perspectives and
information that families, children, and young adults themselves provide are essential
components of high-quality clinical decision-making, and that patients and family are
integral partners with the healthcare team.

19
According to the Institute of Medicine (IOM), patient- and family-centred care
(PFCC) occurs in partnership with practitioners, patients, and their families in order to ensure
that decisions are respectful of the wants, needs, values, and preferences of the patient, and
that patient values guide all clinical decisions (Institute of Medicine, 2001). From this point
forward, I use the term patient-centred care interchangeably with patient- and family-centred
care, given that they share the same goals and have the same implications for individuals and
families (Entwistle & Watt, 2013). Both approaches share crucial elements for the delivery of
high-quality care by professionals in healthcare (Institute of Medicine, 2001). Liptak et al.
(2006) emphasize that family-centred care has frequently been identified as a core feature of
healthcare for children and that it sets the stage for the delivery of high-quality healthcare
services to children and their families. They note that, when PFCC was implemented in the
process of healthcare practice, parents not only felt heard but also believed that they were
able to obtain relevant information needed to participate fully in shared decision-making that
served the interests of their children (Liptak et al., 2006). Fostering a family-professional
partnership is a necessary component of healthcare, especially when provided to children
with complex developmental behavioural conditions.
Formal Diagnostic Process
The overall purpose of the diagnostic process is to allow the development of tangible
recommendations to enhance the lives of the individuals in question, their families and their
community (Chudley et al., 2005). Parents may be informed of the diagnosis of their child’s
disability at different junctures in the course of raising their child. This information may
come to light during the prenatal development period, at birth, or during the emergent periods
at various stages of the child’s development (Harnett, Tierney, & Guerin, 2009). The settings

20
in which the diagnosis of a child’s disability is provided can differ a great deal; the delivery
of the news may occur in a hospital, a community health services setting, a disability
environment, a healthcare clinic, or the family home (Harnett et al., 2009). The news of a
child’s disability may be unforeseen, or it may be the outcome of a number of planned
assessments or tests (Harnett et al., 2009). In most cases, parental concern for the well-being
of their child, combined with the uncertainty about how to best support their child, typically
motivates a parent to seek out a formal assessment and diagnosis.
Siklos and Kerns (2007) conducted a study by way of questionnaires regarding the
diagnostic experience of parents with children who have autism—82% of parents in their
study found the diagnostic process stressful. Parents described the diagnostic process as timeconsuming, with long waitlists and delays between clinical meetings (Mulligan, MacCulloch,
Good, & Nicholas, 2012; Siklos & Kerns, 2007). Nonetheless, Tattersall and Young (2006)
found the diagnostic period to be an important process for parents and Todd and Jones (2003)
found that parents can often provide detailed and vivid accounts years after the diagnostic
experience had passed, signifying the central importance of this process. Shevell and Shevell
(2013) use the metaphor of a key to describe the process of being given a diagnosis—a “key
fitting into a lock, a diagnosis opens the door for future provisions of care” (p. 230). Most
often the evaluation is an ongoing process that requires numerous encounters facilitated by a
multidisciplinary team of professionals.
Different healthcare specialists often use a variety of terms for the diagnostic process,
where terms such as evaluation, assessment, identification, and diagnosis can mean much the
same thing. Klein et al. (2011) summarize the process this way: “The diagnostic assessment
is a comprehensive process where an interdisciplinary team of professionals share

21
information regarding the child’s diagnosis, functioning level (e.g., language abilities, selfcare independence, play skills, problem-solving abilities), intervention strategies, and
available resources with families” (p. 121). A diagnosis is the culmination of complex
testing, interviews, analysis of findings, preparation of the diagnosis, and formulation of
recommendations.
Gender
Graungaard and Skov (2007) found that the gender of the parent present when a
diagnosis was to be given appeared to influence the way in which the diagnosis was
translated to the parent and what kind of information was deemed to be vital. For example,
men wanted a more logical avenue to allow them to comprehend and cope with the news,
often asking for a thorough written report. Starke and Möller (2002) found that mothers who
questioned the diagnosis were more likely to seek information from another source.
Graungaard and Skov (2007) also found a gender difference in the way mothers and fathers
imagined the future:
Fathers tended to need a longer future perspective and a firmer idea of what the future
might bring. Mothers were more likely to concentrate their mental energy on caring
for the baby, breastfeeding and other normal parenting duties, as well as mentally
strengthening the child with their energy. (p. 301).
Research findings show that approximately half of the parents in a number of studies
were informed of their child’s diagnosis as a couple (Pearson, Simms, Ainsworth, & Hill,
1999). Furthermore, parents preferred to be together when receiving the diagnosis and
insisted that this be the appropriate practice unless there were important reasons for having

22
the news delivered when separate (Paul, Cerda, Correa, & Lizama, 2013). The practice of
delivering a diagnosis to both parents is not a recent one. Dembinski and Mauser (1977)
confirmed 40 years ago that parents valued the presence of their partner, noting “that joint
parental responsibility for a child may reduce the possibility of family discord, distortion of
information, and increase the understanding and acceptance of the child” (p. 582).
Additionally, numerous studies have shown that mothers do not like to hear the news for the
first time from their spouse or partner. Skotko, Capone, and Kishnani (2009) found that
when a parent heard the news from a partner, it created an unfair burden on the partner, who
may already be carrying a sense of guilt, stress, and anxiety over the situation.
Interestingly, Hasnat and Graves (2000) found no relationship “between overall
satisfaction and any of the variables relating to the people present at the disclosure interview”
(p. 34) and Sloper and Turner (1993) reported similar findings. Despite these contradictory
findings, it nonetheless seems imperative to ask the family who they would like to have
present during the family meeting to provide emotional support (MacKean et al., 2005). In
any case, the invitation to have parents allow family, friends, or any other person they deem
significant is consistent with the philosophy of PFCC (Lindeke, Leonard, Presler, &
Garwick, 2002). In a completely different health context—yet related to the delivery of a
diagnosis, Ramos (2014) found that, in cases where an HIV diagnosis was to be given,
patients expressed a preference for hearing the news directly from their physician and were
not necessarily interested in having other professionals or even meaningful others present
during the session. In keeping with these findings, Pearson et al. (1999) emphasize that more
planning is required to guarantee that parents and patients alike have a choice about who

23
attends the family meeting and/or professional encounter when a health diagnosis is
delivered.
Length of Diagnostic Assessment
The duration of time involved from the commencement of the comprehensive
diagnostic assessment to the delivery of the final diagnosis is a common theme expressed
throughout the literature (Hubermann, Boychuck, Shevell, & Majnemer, 2015; Zuckerman,
Lindly, & Sinche, 2015). In some instances, certain disabilities can be diagnosed at the
outset. Down syndrome, for example, is based on distinctive physical features which are
obvious at birth and parents are notified on the day of delivery or shortly thereafter (Skotko
et al., 2009). For the most part, however, findings show that there is often a significant delay
between the first diagnostic visit and the formal delivery of the diagnostic results. Shevell
and Shevell (2013) add the caveat that one of the most serious outcomes associated with a
delay in a diagnosis is the deterioration of parental confidence in the multidisciplinary team.
Keenan, Dillenburger, Doherty, Byrne, and Gallagher (2010) found that “between the first
referral and the diagnosis an average of 16 months elapsed” before a formal diagnosis was
established (p. 393). Crane, Chester, Goddard, Henry, and Hill (2015) found that parents in
the UK face a delay of 3.5 years from the first contact with the health professional until the
receipt of the formal diagnosis. And yet, concerned families want access to information and
services immediately in order to achieve the best outcomes for their children. This is entirely
in keeping with research which shows that early intervention for children with complex
developmental disabilities and/or cognitive and general developmental delays increases the
likelihood of positive outcomes for the child and family (Guralnick, 2005; Guralnick &
Bricker, 1987; Smith, Groen, & Wynn, 2000). Early intervention has been recognized for its

24
benefits and improved outcomes in a variety of neurodevelopmental disabilities for many
years (Merriam & Majnemer, 1998). Waiting a long time for a child’s diagnosis has
implications for the child given that the optimal time to implement early interventions may
have passed depending on the age of the child (Kelly, Ghalaeieny, & Devitt, 2012), and
delays can hinder the implementation of effective support and appropriate intervention
strategies (Webb, Jones, Kelly, & Dawson, 2014).
Such delays may also prompt parents to seek information from other less reliable
sources—such as lay professionals, family, friends, and the Internet—prior to receiving the
formal diagnostic assessment, which may result in them having formed misconceptions based
on flawed sources, which in turn may influence how they receive the formal diagnosis (Klein
et al., 2001). Professionals need to be aware of how families assimilate the final diagnostic
assessment in light of other sources of information gathered in the meanwhile (Klein et al.,
2011). At the same time, it should be noted that this kind of seeking for information is also
indicative of problem solving, a process which has been reliably linked to positive effects
when it comes to coping with a child with a disability (Taanila, Syrjälä, Kokkonen, &
Järvelin, 2002).
The duration of time that one may wait in receiving a final diagnosis is not
uncommon, nor is it unique to this sector of the healthcare system. For example, a study
conducted in a setting that involved receiving the diagnosis of cancer found that parents
experienced a significant delay between their first professional encounter and receiving the
final diagnostic results (Eiser, Parkyn, Havermans, & McNinch, 1994). It is no surprise that
the long process following the initial recognition by parents of unusual behaviour in their
child to the child’s final diagnosis will cause parents to experience anger, anxiety, and

25
confusion in the process (Mulligan et al., 2012). According to Shevell and Shevell (2013), a
deferral of a diagnosis involves missed opportunities that can weaken the results, given the
widespread understanding that “early intervention, no matter the underlying diagnosis, does
beneficially improve outcome” (p. 230).
The findings regarding delays, and the implications of such delays, point to the
importance of a multidisciplinary team when it comes to conducting assessments, and to
timing and organizing the communication of the developmental diagnosis.
Multidisciplinary Team
Members of a clinical multidisciplinary team (MDT) are among the many
professionals who are tasked with the delivery of a child’s developmental diagnosis—and all
will acknowledge the difficulties inherent in such a disheartening action. Today, a greater
number of professionals who provide services to children and families with disabilities have
implemented some form of the multidisciplinary team model (Berman, Miller, Rosen, &
Bicchieri, 2000). MDT allows that each team member will contribute to the overall diversity
of expertise as a way of increasing “the effectiveness of decision making and meeting clients’
needs in a more holistic fashion” (Housley, 2003, p. 76).
Hinshaw and Deleon (1995) remind us that the healthcare system is
multidimensional, and no one discipline or area of expertise can deliver the quality of
comprehensive assistance that families need in order to address the complex needs of some
children. Research indicates that multidisciplinary teams are crucial to the development of a
coordinated assessment that will contribute to fostering and preserving the health of society,
while at the same time developing services that are effective and of sound quality (Xyrichis
& Lowton, 2008). In light of the benefits of multidisciplinary teams in the delivery of

26
healthcare, the World Health Organization has developed a number of documents that
reinforce the understanding that healthcare providers across various disciplines are more
effective when working together (World Health Organization, 2006). On an international
level, according to Hudson (2014) Scotland, Northern Ireland, Wales, and England have,
since 2002, each developed healthcare models that indicate a shift towards amalgamated
prototypes of service delivery, indicating a growing understanding that service providers
must work in partnership within health, education, and social policy to provide quality care to
the children and families affected by a developmental disorder.
Multidisciplinary teamwork has existed for several decades within healthcare as a
means to address the multiple needs of diverse populations. Research indicates that the
diagnosis and treatment of various complex developmental behaviour and health conditions
marked by multiple comorbidities are best addressed by a multidisciplinary approach
(Chudley et al., 2005, Hudson, 2014; Lamb et al., 2014). Nijhuis et al. (2007) emphasize
that, in these situations, both the child and the family require a comprehensive treatment plan
which should be informed and developed by a team of professionals from various disciplines
who must work closely together. Similarly, Davidson et al. (2007) point out that a
multidisciplinary team must work directly with the child and the parents in order to keep
them informed and to have them actively involved in the clinical decision making.
Research indicates that, when multidisciplinary teams incorporate patient-centred
information into their decision making and couple this with biomedical information, quality
decisions are attained (Lanceley, Savage, Menon, & Jacobs, 2008). Multidisciplinary teams
usually include developmental pediatricians, psychologists, speech-language pathologists,
occupational therapists, and social workers, all of whom aid in the delivery of the diagnosis

27
(Klein et al., 2011). One of the hallmarks of an efficient team is the ability to communicate
effectively with one another and, most importantly, to communicate effectively with the child
and family. Effective communication between patients, families and physicians is the
foundation for a meaningful relationship and, most important, it creates an avenue to shared
decision-making (Mack, Feudtner, & Hinds, 2011). Shared decision-making is seen as the
“pinnacle” of PFCC framework (Barry & Edgman-Levitan, p. 780, 2012).
Professional Communication and Parental Prerequisites
The rapid evolution of the healthcare system has prompted the scholarly investigation
of communication practices as they occur between physicians and their patients in medical
settings (Ong, De Haes, Hoos, & Lammes, 1995; Pahal, & Li, 2006). As a general physician
or a member of a multidisciplinary team, it is important to consider how information about
the diagnosis, prognosis, and treatment options will be conveyed to the family. Deploying
positive communication styles and providing meaningful knowledge empowers families to
take an active, participative role in partnering with medical professionals. Studies conducted
in medical environments demonstrate that satisfied patients are more likely to engage in the
medical diagnostic process, achieve higher levels of compliance with treatment
recommendations, experience improved signs of ailment control, and act in a manner that
ultimately leads to positive outcomes for the mental and physical health of the patient and the
family (DiMatteo, Haskard-Zolnierek, & Marin, 2012; DiMatteo, Prince, & Taranta, 1979;
Doyle, Lennox, & Bell, 2013; Hall, Milburn & Epstein, 1993; McLaughlin, 2005; Roter,
Hall, & Aoki, 2002; Irish & Hall, 1995; Price et al., 2014). In other words, the quality of the
interaction has shown to be a positive link to the individual’s ability to follow through with
treatment plans and recommendations (Charon, Greene, & Adelman, 1994; Singh, Naik, Rao,

28
& Petersen, 2008; Stewart, 1995). Similarly, the ways in which the delivery of a child’s
disability diagnosis is delivered can have an immense effect on the parents’ ability to follow
through with their child’s clinical recommendations (Ahmed, McCaffery, & Aslani, 2013).
Building relationships and including parents in all aspects of the assessment process
is seen as a positive indicator of future success for the child and the family (Graungaard &
Skov, 2007). Inclusion fosters the advancement of parents’ understanding of their child’s
disability and cultivates agreement between parents and professionals regarding what
supports and services are meaningful (Glaun, Cole, & Reddihough, 1998). This type of
communicative interaction is congruent with the pillars of FPCC, noted above (Barry &
Edgman-Levitan, 2012; Hutchfield, 1999).
As a cautionary note, engaging in PFCC does not mean that the professional
relinquishes their control to the family, but rather that they discover mutual territory when it
comes to understanding the child’s diagnosis and the needs of the family (Laine & Davidoff,
1996). Higgs, McAllister, and Sefton (2005) note that effective communication is achieved
when the intended message of the sender has been heard by the person involved (receiver),
and together they accomplish a shared understanding. Nissenbaum, Tollefson, and Reese
(2002) propose a model along these lines—the conference and collaboration model—
understood to be an effective option for delivering a diagnosis because the parents are both
involved in the process. Additional techniques and models will be discussed later in this
chapter.
Medical and health professionals should be honest, compassionate, and able to
convey hope when delivering a diagnosis. The purpose of adopting this posture is to provide
some positivity, allowing physicians and professionals to encourage parents to become

29
effective partners in their child’s journey. Uys (2010) indicates that this style of delivering
serious news will have a positive impact on how the family copes with the diagnosis, and
Klein et al. (2011) show that adequate information during the delivery of the diagnosis is
associated with higher parental satisfaction. Physicians who practise a PFCC communication
style tend to allow time for the discussion of psychosocial issues rather than limiting their
focus to the technical aspects of illness and treatment.
At the same time, Roter, Hall, and Aoki (2002) proposed that the way in which
medical professionals use specialized language, or medical jargon (which often obscured the
possibility of understanding) may contribute to the lack of follow-through on the part of the
parents when it comes to implementing the clinical recommendations. It is important that
professionals are cognizant of the language they use when communicating with families in
order to circumvent the complexity of the message—the content must be adapted to suit the
particular needs of the parents and the context in which they find themselves (such as cultural
and educational background, income, and social standing). In fact, Szwajcer, Macdonald,
and Kvern (2014) proposed that a health literacy training program should be incorporated
into the Canadian family medicine curriculum. Jenkins and Fallowfield (2002) reminded us
that personal beliefs are complex understandings—based on social, emotional, and
behavioural factors—misinterpretation can easily happen in the course of communicating
complicated information. Quine and Rutter (1994) reported that inadequate communication
tended to foster non-compliance with the clinical recommendations, and Price, McNeilly, and
Surgenor (2006) emphasized that the use of medical terminology must be rephrased in simple
layman’s terms when conveying a diagnosis to a patient, or to the family of a patient.

30
Similarly, negative or even remotely negative comments have the potential to be
damaging to the self-esteem of the parent. For example, Harnett et al. (2009) found that
when influential professionals conveyed an absence of hope at a time when parents were
particularly susceptible, the effect on the ability of parents to cope would have “negative,
self-fulfilling outcomes and limit the developmental opportunities that will be provided for
the child” (p. 37).
The literature reviewed shows that parents look for particular professional attributes
and behaviours when receiving their child’s final developmental diagnosis: they wish to be
told as soon as possible, in privacy, in a direct but sympathetic manner; they want an
opportunity to discuss the diagnosis in detail; and they want additional time to work out their
feelings about the experience (Quine & Rutter, 1994; Skotko, 2005; Strauss, Sharp, Lorch, &
Kachalia, 1995). For example, Martins and Carvalho (2013) found that 77.8% of patients
who received bad news preferred an “empathic professional” to deliver the diagnosis.
Skotko et al. (2009) found that parents wanted to hear the news immediately, even in cases
where the diagnosis was not yet confirmed. Chiarello, Effgen, and Levinson (1992) found
that parents appreciated professionals who were personal, communicated effectively,
demonstrated commitment, understanding, and compassion, promoted equality, and valued
the family. Mansell and Morris (2004) found that parents wanted practical support and more
time following the disclosure of the diagnosis in order to absorb the information postdisclosure and that they wanted to request a follow-up appointment to ask meaningful
questions.
Often, despite best efforts to take precautions when imparting information about the
results of a diagnosis, the process happens very quickly and the practitioners involved do not

31
have the luxury of a follow-up appointment or repeated visits with the family (Nissenbaum,
Tollefson, & Reese, 2002). Shevell and Shevell (2013) emphasize that, where there is the
sense that a family has not fully comprehended the information given, a follow-up meeting
should be scheduled soon after the meeting. A number of research findings indicate the
value of a follow-up meeting shortly after the diagnosis has been conveyed and emphasize
the importance of the presence of the same professionals who provided the diagnosis to the
family (Kisler & McConachie, 2010; Sloper & Turner, 1993).
According to Levetown (2008), the ways in which patients and families assimilate
information fall into two areas of learning—the cognitive and affective domains. Cognitive
requirements have to do with “the need to know and understand,” and affective requirements
have to do with “the emotional need to feel known and understood” (Levetown, 2008, p.
1442). Levetown (2008) is essentially describing one of the most basic of all human needs—
the need to understand and be understood.
Diagnostic evaluation reports or written information are often provided to parents and
clients during their clinical meeting. With respect to cognitive learning, a study conducted
by Waisman et al. (2003) in a pediatric emergency discharge setting found that parents
responded better to formal, written post-discharge care instructions (information sheets) than
they did to the verbally transmitted emergency diagnosis. Likewise, Brogan and Knussen
(2003) conducted a study involving 126 parents regarding their overall satisfaction with the
disclosure of their child’s disability and the results showed that parents rated higher
satisfaction when given written information coupled with the opportunity to ask questions.
In contrast, Klein et al. (2011) found that, following the diagnostic disclosure session or final
meeting with the health practitioner, when parents are given a summary report outlining the

32
diagnosis, they are not yet prepared to act upon written instructions. At the same time,
Cranwell and Miller (1987) point out that “it may be too great a task for any one document to
provide information to give indications of appropriate teaching approaches, techniques and
materials, and to present a comprehensive picture to parents” (p. 27).
In keeping with such findings, a number of practitioners are now recording their
clinical sessions so that patients and family members who have difficulty recalling or
understanding the information presented to them will have another opportunity to hear it at a
time of their choosing (Eden, Black, MacKinlay, & Emery, 1994; Price, McNeilly, &
Surgenor, 2006). This kind of proactive intervention works well for practitioners who often
do not have the time for follow-up sessions with families after they have presented their
diagnosis. It is evident that the delivery of a diagnosis is an important task, and if it is not
managed with professional integrity and skill, the outcomes for children and families can be
less than desirable.
Communication Techniques
It seems reasonable to propose that effective communication skills are essential to the
delivery of exceptional services by the healthcare profession. The competent delivery of the
diagnosis is instrumental in bringing parents to a place of understanding, and this, in turn,
will better ensure their follow-through with the treatment recommendations for their child.
Research indicates that when the diagnostic finding is conveyed in a skilled, professional,
and sensitive manner, the information conveyed is more likely to help the parents understand
their child’s needs and allow them to plan for the well-being of their child by way of future
interventions (Cottrell & Summers, 1990). Despite such research findings, a recent analysis

33
by Vail et al. (2011) reported that attending physicians do not use PFCC approach when
breaking bad news.
Bartolo (2002) advocates communication techniques that are grounded in the
philosophy of the PFCC approach. He recommends three negotiating frameworks that can be
adopted to communicate a diagnosis with families, all of which are positive, thorough, and
have demonstrated good outcomes: (a) a parent-friendly framework, (b) defocusing the bad
news, and (c) a hopeful-formulation frame. Similarly, Shea (1993) offers suggestions for an
interpretative conference that includes “setting goals for the conference, stating the diagnosis
and anticipating the family to react emotionally to the diagnosis” (p. 31). Shea also stresses
the importance of the physical setting, the use of language, and a discussion of the child’s
future.
The relational diagnosis model proposed by Rigazio-DiGilio (2000) addresses the
“intrapersonal perspective” (p. 1018) of communicating a diagnosis. Relational diagnosis
considers each individual as part of the family, which filters into the larger social structure of
a community. This approach recognizes that each situation is unique due to the
distinctiveness of each family’s dynamics. The relational diagnosis model stresses the
importance of the “larger sociocultural context, sees each client’s uniqueness and reality as
tantamount, and provides highly specific procedures that facilitate clinicians and clients to
co-create therapeutic environments” (Arciniega & Newlon, 1999, p. 452). Another research
study made several critical recommendations which included revealing the results at the
earliest opportunity, providing an opening for a follow-up meeting, offering ample
information in a transparent, non-jargon format, and conducting the family meeting in a
compassionate and truthful manner (Sloper & Turner, 1993).

34
Fallowfield (1993) describes three ways of giving bad news: the first is blunt and
insensitive and accepts that patients will be upset; the second is kind and sad, but devoid of
positive support, encouragement, or optimism; and the third is understanding and positive
with a lot of flexibility, reassurance, and empathy (Fallowfield, 1993, p. 6). The literature
makes it clear that the third approach produces better outcomes for children and families.
Other related literature shows similar results, where empathetic understanding and sincerity
were important for health professionals to communicate. Harnett et al. (2009) emphasize the
importance of delivering a child’s diagnosis with “positive, realistic and hopeful
communication” (p. 257). The authors present findings from their three-phase research
project that aimed to determine the most effective form of communication for patientpractitioner interaction. Based on their findings, the authors present the following guidelines
for effective diagnosis communication:
Family-centered disclosure.
Respect for child and family.
Sensitive and empathetic communication.
Appropriate, accurate information.
Positive realistic messages of hope.
Team approach planning.
Focused and supported implementation of best practice. (Harnett et al., 2009, p. 260.)
These findings are not necessarily new given that parents and families have been expressing
the same desires for nearly four decades. Essentially, patients have reported that overall
satisfaction is achieved when physicians show respect in the way they conduct themselves
(Doyle & Ware, 1977).

35
Formal Education
Many physicians feel uneasy and unprepared when it comes to conveying poor
results, despite the fact that they do this on a regular basis (Dosanjh, Barnes, & Bhandari,
2001). Breaking bad news is an extremely difficult and challenging process for the
healthcare professional (Price et al., 2006). Many internship and university programs do not
include formal instruction on ways in which bad news can be better delivered (Hebert,
Butera, Castillo, & Mega, 2009; Reed et al., 2015). Finocchio, Bailiff, Grant, and O’Neil
(1995) indicate that graduates from medical school have not received the necessary core
communication competencies, leaving them unprepared to be effective at communicating.
Dosanjh et al. (2001) argue that the old-style medical education is “ineffective in teaching
clinical communication” (p. 204). Similarly, a study conducted with clinical oncologists
showed that only 6% of the oncologists were exposed to curriculum related to conveying bad
news; hence, they rated their ability to perform in this area as very low (Hebert et al., 2009).
Sadly, another study reported that only 27% of residents felt competent in giving bad news to
parents of a sick child (Rider, Volkan, & Hafler, 2008).
Over the course of a professional health career, clinicians likely have had to disclose
bad news to patients and families with some frequency—an experience widely known to be a
source of significant stress for many healthcare professionals (Baile et al., 2000). For both
novice and experienced healthcare professionals, the learning process for the delivery of bad
news is via mentorship of preceptors and, sadly, through trial and error. Many physicians
struggle to achieve competence in delivering bad news (Sweeny, Shepperd, & Han, 2013).
Reed et al. (2015) acknowledge the difficulty, emphasize a professional and tactful approach,
and propose that breaking bad news is a teachable skill. In addition, Hedderly et al. (2003)

36
report that similar training is needed for the many other professional practitioners who make
up multidisciplinary teams. One study investigated the practicality of social workers as
evaluators of residents delivery of bad news during patient encounters, and both professional
groups shared feedback related to this approach—results highlighted that the residents value
the expertise of social workers in delivery of bad news, and the teaching of such a difficult
skill (Min, Spear-Ellinwood, Berman, Nisson, & Rhodes, 2016).
Davis et al. (2005) propose that “patient-centered vision would define quality as
providing the care that the patient needs in the manner the patient desires at the time the
patient desires” (p. 953). One way to cultivate a responsive healthcare system requires the
canvassing of the patient’s overall experience with their primary caregiver (Davis et al.,
2005; Joos, Hickman, & Borders, 1993). Audet, Doty, Shamasdin, and Shoenbaum (2005)
note that only 36% of primary physicians routinely receive patient survey information, and
less than 50% of those take this feedback into account and incorporate it into their practice—
despite the IOM recommendation of the inclusion of PFCC in 2001.
Harrison and Walling (2010) question whether future professional practitioners can
acquire practical competency in this complex realm, even if proficient training is provided,
due to the multiple factors involved when delivering bad news. On the same note, Wouda
and van de Wiel (2013) express skepticism about whether medical students can actually gain
“expertise in professional communication” during their medical training (p. 51). They
recommend that “curriculum designers should reflect on the amount of time and effort they
want to spend on the teaching of clinical communication and to determine the level of
communication competency they find realistic to achieve within these limitations” (p. 51). In

37
contrast, as noted above, Reed et al. (2015), in their study conducted with pediatric residents,
found that residents can be taught to break bad news to parents and families.
A number of studies concerned with looking at the way a child’s diagnosis was
communicated showed that the greater emphasis was on the prognosis and that the
communication process contained more intense emotional content than similar situations
where a diagnosis was being given to an adult (Harrison & Walling, 2010). Levetown (2008)
found that there was a lack of emphasis on interpersonal skills in pediatric training, with the
result that little consideration was given to emotions, relationships, and continuity of care.
During certain periods, the physician’s title and attitude were possibly influenced by
some of the residual passé philosophies that once were prominent in the traditional medical
environment—the belief that the medical physician was the expert to the exclusion of other
sources of collateral (patient) (Casstevens, 2010). In fact, Ruffolo, Kuhn, and Evans (2006)
note that “through their training, professionals develop an area of specialization that places
them in the role of an expert” (p. 40). Consequently, professionals may convey an attitude of
superiority which can stand in the way of forming a positive relationship with their client and
take away from their client’s ability to have some control, leaving them to feel as if they are
not able to participate in their care (Ruffolo, Kuhn, & Evans, 2006). At the same time,
research shows that while physicians think that it is critical to involve patients and families in
the decision-making process, over half of the physicians failed to do so—noting some of the
residual impact of past philosophies (Finocchio et al., 1995). In addition, Finocchio et al.
(1995) indicated that the past medical training of their subjects left them ill equipped to
engage in this kind of collaborative process. The researchers advocate for improvements in
the education and training of medical practitioners.

38
In their review of the research, Libert et al. (2001) found that students reported that
training was helpful, but that research indicates a lack of transfer from theory to practice.
Nonetheless, a decade later, Barth and Lannon (2011) argue that communication can be
taught and that an emphasis on communication skills has become a vital component of the
training for medical practitioners. Furthermore, content that deals with breaking bad news
has been incorporated into medical pedagogy in undergraduate and postgraduate curricula in
North America (Wakefield, Cocksedge, & Boggis, 2006).
Mnemonic Approaches
Baile et al. (2000) notes that the process of disclosing unfavourable clinical
information to patients can be seen as similar to other medical procedures that require the
execution of a stepwise plan. Given the importance of being able to communicate difficult
news to individuals and their families a number of modalities, or specific techniques for
communicating, are identified in the research literature. Approaches that incorporate a
mnemonic (i.e., a pattern of letters which stand for a concept or action and serve to trigger
memory) have been shown to be effective, in this case mnemonics that are useful for
reminding a practitioner of baselines to ensure that key issues are addressed.
The two mnemonics used extensively by healthcare practitioners to aid them in
delivering bad news to patients with chronic conditions or illnesses are S.P.I.K.E.S. (S =
setup, P = perception, I = invitation, K = knowledge, E = empathize, S = summarize and
strategize), and A.B.C.D.E. (A = advance preparation, B = build a therapeutic
environment/relationship, C = communicate well, D = deal with patient’s and family
reactions, E = encourage and validate emotions).

39
The S.P.I.K.E.S. protocol for the disclosure of an illness or disability is a method that
can be used by a multidisciplinary team. It refers to a step-by-step process that was initially
created for patients who were diagnosed with cancer but has also been used in numerous
other settings to assist a range of healthcare specialists deliver bad news to patients and/or
their families. With respect to the first step, setup, a team member will arrange to meet with
the parents for an interview. This meeting should ensure privacy and involve the input of
any significant others identified by the family. Above all, the time allotted for this meeting
should not be constrained, and interruptions should be avoided or explained if expected.
In the second step, perception, the practitioner will assess the parents’ perception, or
understanding of the situation in which they find themselves. Understanding what the
parents do or do not know will allow the practitioner to tailor a response that suits the
parents’ level of knowledge on the matter and reduce additional unwanted and unnecessary
stress. The third step, invitation, refers to point in the meeting where the practitioner asks the
parents whether they would like more information. The fourth step, knowledge, refers to
giving additional information which will incorporate a forewarning prior to giving bad news.
During the fifth step, empathize, the practitioner’s role is meant to shift from being
informative to being empathic and supportive by responding to the parents’ reactions with
compassion and caring. In the sixth and final step, summarize, the goal is to outline a
strategy for dealing with the diagnosis and to summarize what has occurred in the course of
the meeting by reviewing the main points, outlining a plan, and scheduling another meeting
(Baile et al., 2000).
The A.B.C.D.E mnemonic technique is similar to the S.P.I.K.E.S. sequence but is
condensed into five steps. Step A refers to advance preparation, which involves

40
incorporating what the practitioner imagines the parents may already know and taking the
time to prepare the delivery of this information privately and ahead of time (Rabow &
McPhee, 1999). Step B, building, refers to creating a therapeutic environment and building a
relationship with the parents—in a safe and private space and an atmosphere that feels warm
and welcoming. Step C, communicate well, refers to incorporating some key communication
strategies to assist in the delivery of the diagnosis, such as being direct, avoiding the use of
euphemisms or jargon, allowing time for silence, and repeating information as necessary
(Rabow & McPhee, 1999). Step D, deal, reminds the practitioner to deal with parental
reactions in a professional and empathic manner, and step E, encouraging reminds the
practitioner to provide encouragement and validate the emotional responses of the parents.
This last crucial step reminds the practitioner to ensure that all questions are answered and
assess whether the parents have absorbed as much of the information as possible in the
course of this first meeting.
In 2004, the Ireland Health Services National Partnership Forum gave support to the
National Federation of Voluntary Bodies to develop national best practice guidelines for how
families are informed of their child’s disability (Informing Families Committee, 2007). The
ensuing research study Informing Families of Their Child’s Disability, which was conducted
in 2007, generated eight guidelines that were identified as vital for informing a family of
their child’s diagnosis: (1) the setting/location and the people present at disclosure; (2)
communication; (3) information and support; (4) culture and language; (5) training,
education and support for professionals; (6) organization and planning; (7) referral; and (8)
dissemination. It was recommended that, when delivering the diagnosis, professionals must
communicate with honesty, empathy, sensitivity, respect, compassion, and understanding

41
(Informing Families Committee, 2007). The study emphasized that it is critical that the
diagnosis include positive and realistic messages embedded with hope.
Efficacy of Guidelines
Guidelines have been developed on the subject of “how to discuss the diagnosis of
neurodevelopmental disability with the family” (Kisler & McConachie, 2010). Research
studies have been generated outlining practice standards intended to strengthen and enhance
practice (Cottrell & Summers, 1990). However, Eggly et al. (2006) disputed the
accomplishment of various guidelines that are published to assist professionals in
communicating bad news to patients. They argue that the fundamental problem with the
guidelines was that the style used during the delivery process dictates a prescribed sequence,
regardless of the nature of the medical practice. Ultimately, the authors argue that the
delivery does not always occur in a linear or chronological fashion due to a host of factors
that are unique to each individual, family, and/or situation. Martis and Westhues (2013)
concur, indicating that “the level of knowledge, sensitivity, and skill required for clinical
interactions differs according to disease type, its severity, consequences, and the
psychosocial characteristics of persons involved in the situation” (p. 3). Barclay, Blackhall,
and Tulsky (2007) point out that these methods are widely used in healthcare and pedagogy
but the evidence regarding them is ambiguous.
Fallowfield and Jenkins (2004) support the fundamental principles of these strategies,
which appear to them as practical and well-intended. According to these authors,
professionals need to strike a balance between elevating hopefulness and creating unrealistic
expectations. Similarly, Harnett et al. (2009) point out that professionals may face legal
challenges when offering hope, inadvertently prompting a family to engage in wishful

42
thinking—something to take into consideration in the training of future practitioners.
Another criticism of the guidelines has to do with accountability. A number of sources point
out that there is no audit process to verify the level of adherence by practitioners to the
guidelines in a practice setting (Kisler & McConachie, 2010). As a case in point,
McConachie (1991) indicated some years ago that a great deal of work was needed to
incorporate the guidelines into practice, especially when it comes to child development
teams. McConachie emphasized the value of ensuring that the guidelines continue to be
incorporated through times of employee changes and departures. Kisler and McConachie
(2010), in their retrospective review of parental satisfaction subsequent to the introduction of
such guidelines, determined that longstanding compliance is hard to ensure in the face of
employee turnover.
Fallowfield and Jenkins (2004) argue that there is scant evidence linking the
incorporation of guidelines to improved outcomes for individuals, given that there is no way
to measure patient outcomes. The authors further emphasize that the hallmarks of solid
professional preparation are sound pedagogical principles combined with evidence-based
research and an active quality assurance function (Fallowfield & Jenkins, 2004).
Parental Experience and Impact
At the heart of the process by which a diagnosis is delivered is the necessity to
enhance the knowledge and coping abilities of the family and lessen the impact of
devastating news (Boyd, 2001). Klein et al. (2011) acknowledge that research shows that
when a family is given the diagnosis of a child’s disability it will have an emotional effect on
the parents. Sloper and Turner (1993) also found that “the disclosure of a child’s
neurodevelopmental disability is recognized as a ‘crisis event’ for the parents as the

43
information successfully destroys previously held dreams despite internal doubts and
concerns” (p. 816). Similarly, research shows that a diagnosed disability of the child affects
parents in both negative and positive ways (Beck, Daly, Hastings, & Stevenson, 2004;
Boström, Broberg, & Hwang, 2010; Hastings & Taunt 2002). Studies show that the
diagnosis can not only be traumatic for parents but can interfere with their ability to bond
with their child (Fitzpatrick, Graham, Durieux-Smith, Angus, & Coyle, 2007). Shevell and
Shevell (2013) point out that on first hearing the words “developmentally delayed” or similar
words to that effect, a parent’s dream of having a normal child may shatter as it becomes
clear that the child may not achieve appropriate developmental milestones. Similarly,
Schuengel et al. (2009) noted that a sudden and drastic change occurs in the way in which
parents think about their children, often resulting in grief as they consider losing a perfect
child. On the other hand, Klein et al. (2011) reported that families who are inclined to hope
are able to develop a new vision of their child and come to see a clear trajectory forward.
Quine and Pahl (1987) found that some parents responded to the final diagnosis with
relief after the uncertainty of a lengthy journey of tests. Similarly, Dembinski and Mauser
(1977) confirmed that, when parents were informed of their child’s learning disability, they
experienced a feeling of acceptance and relief.
Shevell and Shevell (2013) point out that having a disability confirmed will change
parents’ expectations; it will generate new challenges which may seem impossible to
overcome—challenges which will change family dynamics. They emphasize the
significance of the child’s family environment and note that it will have a powerful outcome
on a child’s disability. Parents are trying to understand the meaning of the new information
and imagine the future, both for their child and for their family (Graungaard & Skov, 2007).

44
The child’s family is seen as the most influential factor when it comes to managing a
disability, and the family dynamic is fundamental to shaping a positive or negative
experience for the child (Bronfenbrenner, 1986).
Graungaard and Skov (2007) argue that the disclosure process significantly shapes
the emotional reaction of the parents. Their qualitative examination of 16 families in
relation to the impact of the diagnosis found that parents placed a significant value on the
initial contact with professionals. Their findings showed that there was a strong correlation
between the ability of parents to cope with their child’s diagnosis and the nature of the
diagnostic process (Graungaard & Skov, 2007).
Research shows that the manner in which the child’s disability is disclosed shapes the
way in which parents adjust to their child’s circumstance, and this may, in turn, influence the
treatment of the child in the early stages following the disclosure (Chiu et al. 2014; Cottrell
& Summers, 1990; Graungaard & Skov, 2007; J. Ptacek & Eberhardt, 1996). Research also
shows that parental dissatisfaction with the disclosure process is correlated to an increased
level of depression in a parent in the future, as well as the long-term impact on a parent’s
ability to cope (Baird, McConachie, & Scrutton, 2000; Taanila et al., 2002). Shevell and
Shevell (2013) emphasize that, without a doubt, the process of disclosure will have an impact
on the way parents will adjust and the kind of management techniques they will develop,
factors which are essential to fostering the best interests of a child. They point out that this
process “is critically important, as the parents are the essential drivers and partners of their
child’s health care” (Shevell & Shevell, 2013).
Klein et al. (2011) conducted an exploratory and descriptive qualitative research
study which focused on the parental experience of the diagnostic delivery where six out of

45
the nine (66%) dyads in the study reported their experiences as emotional and anxiety
provoking. One mother stated, “I didn’t know what they wanted and that’s what caused me
such frustration and such angst” (p. 125). The researchers also noted that parents expressed
their wishes to hear the particulars of the diagnosis but found the experience overpowering
and likely to create a weepy atmosphere.
Graungaard and Skov (2007) caution that such an emotional reaction is occasionally
misjudged in the sense that it may prompt the health professional to limit the information
shared during the diagnosis. Crane et al. (2015) note that “it was predicted that overall
satisfaction ratings would be greatest among the parents who rated the provision of
information received at diagnosis highly,” which suggests that it would be advantageous to
take a break at this point in the clinical interaction and reconvene without sacrificing the
required information that the parents’ need and desire (p. 3). This study also showed that
66% of parents were satisfied with the professional behaviour when they felt fully informed
of their child’s diagnosis. This percentage is higher than the finding reported by Jones,
Goddard, Hill, Henry, and Crane (2014), which showed that only 47% of parents were
satisfied with the manner in which the diagnostic results were presented. From a quality
assurance perspective, these percentages show a low level of satisfaction overall, which
confirms the need for appropriate communication strategies to be built into the formal
education and training of professional health practitioners.
A number of studies highlight the observation that disability disclosure fosters a
period of change for the parents, in ways similar to the phases identified in bereavement
(Cunningham, Morgan, & McGucken, 1984). A study conducted by Quine and Pahl (1987)
describes the initial emotional reaction of parents as one of overwhelming shock, where 64%

46
felt “stunned, confused or numb” (p. 233). Kisler and McConachie (2010) note that models
based on those helping families adjust to bereavement have been developed to help families
adapt in the period following a challenging diagnosis for their child.
A number of sources also indicate that the trauma experienced by parents upon
learning about their child’s disability can jeopardize their interpretation of the information
they receive (Bartolo, 2002; Quine & Pahl, 1986; Seideman & Kleine, 1995). Klein et al.
(2011) observed that there is a likelihood that parents may feel overwhelmed and unable to
digest the information in the period immediately after the news has been delivered, and
Shevell and Shevell (2013) observed that it is not uncommon for parents to leave the initial
meeting retaining very little of what was explained. A study conducted by Morse (2011)
revealed that parents experienced a feeling that they could not hear anything, which made
understanding medical information difficult. Morse’s subjects reported that, although they
could hear the physician’s voice, they had no ability to register the words, never mind being
able to synthesize meaning. Morse found that hearing bad news had an impact on cognitive
functioning to the extent that it became a challenge for people to fully comprehend what was
being said. She notes that comprehending, knowing, and understanding are slow processes
and change cannot come about until the information is fully integrated.
Eiser et al. (1994) found that when parents are provided complex, detailed
information during an emotionally saturated period, complications may arise because their
ability to absorb the information is impaired, which in turn results in greater difficulty
recalling the period during when the diagnosis was made. A similar parental experience was
observed in a different healthcare discipline in relation to the delivery of a medical diagnosis.
Kessel, Roth, Moody, and Levy (2013) also found this to be the case in a pediatric oncology

47
setting where parents described the time of first hearing a diagnosis of cancer as a “blur” and
acknowledged that “retaining information becomes difficult and overwhelming” (p. 393).
A number of studies indicate that parents want an opportunity not only to express
their feelings but also to ask questions during the family meeting (Garwick, Patterson,
Bennett, & Blum, 1995; Krahn, Hallum, & Kime, 1993; Krauss-Mars & Lachman, 1994;
Ptacek & Eberhardt, 1996). Parents also reported that they did not know what questions to
ask during the family meeting as they did not understand and were reluctant to reveal their
lack of knowledge (Eiser et al., 1994). Similarly, parents felt that they were imposing on the
professionals when they asked questions (Dembinski & Mauser, 1977). Skotko (2005) found
that if mothers felt that they were not given an opportunity to ask more about their child’s
condition, they experienced a great deal of anxiety and stress which contributed to a negative
outlook on the child’s future.
Parents also revealed, in a qualitative study by Graungaard and Skov (2007), that the
parents were upset by the contrast between their own perceptions about their child and the
doctor’s assessment of their child. This study showed that parents tended to focus on their
child’s strengths whereas the doctor’s characterization of the child was framed in terms of
disability and deficit. Hence, parents saw these assessments as flawed and believed that their
child was being devalued in the process. One might ask whether such discrepancies between
physicians’ views and parents’ views are related to the inability of the physician to change
his or her style of delivery because they are operating within the traditional medical
paradigm. Ponte et al. (2003) noted that the inability of practitioners to change their practice
approach conflicts with the tenets of PFCC. It is no surprise that hearing difficult news

48
provokes anxiety, but the degree of distress may be amplified if the perceptions of doctor and
patient do not coincide (Ptacek & Eberhardt, 1996).
A study by Clarke and Fletcher (2005) found that many parents realized that they had
to be advocates for their child and that “they cared more for their child and their child’s wellbeing than the health care team” (p. 119). The parents in their study felt they needed to be
assertive, persistent, and aggressive, at times believing that it was necessary to intervene.
These differences in interpretation (between physicians and parents) may influence both the
way in which the diagnostic summary is conveyed and the way in which parents describe the
delivery of the content.
The question remains whether it is even possible to achieve patient satisfaction when
less than desirable news is being delivered. Cunningham et al. (1984) considered whether
disappointment was unavoidable on hearing bad news and whether negative parental
reactions would then be directed towards the bearer of bad news. They developed a model
based on previous feedback by parents with respect to their experience with having received
bad news. The model was tested on a control group of parents who had received a diagnosis
and had nonetheless expressed 100% satisfaction, allowing the authors to conclude that
“dissatisfaction is not inevitable” (p. 39). Research indicates that parental satisfaction is
contingent on several factors including the manner of the delivery of the news, the timing,
the age of the child, the quality of information, the support offered post-diagnosis, and the
stress felt during the diagnostic process, all combined with the attributes and internal
resilience of the parents (Crane et al., 2015; Hasnat & Graves, 2000; Howlin & Moore, 1997;
Hubermann et al., 2015).

49
Apart from the physiological and emotional response to a diagnosis, there were other
considerations that factor into a parent’s response, including economic, social, and cultural
identity, as well as knowledge and previous experiences (Korsch, Gozzi, & Francis, 1968, p.
855). While all of these factors played a role in the individual response to a diagnosis, the
proficiency with which the healthcare professional conveyed the diagnosis was ranked as one
of the most influential factors overall.
To summarize, there has been a considerable amount of criticism that identified the
unsympathetic and blunt manner in which health practitioners delivered news, an unfortunate
reality, given that the disclosure process can be a therapeutic turning point for the parents if
exercised effectively (Bartolo, 2002). As discussed above, research has established a link
between parental satisfaction with the way a diagnosis was delivered and the associated
outcomes for both the child and the family. It appears that the opportunity to promote a
better long-term outcome is compromised or lost if this moment of disclosure is not managed
with more consideration. At the same time, the opportunity for exerting a positive influence
at this point cannot be overstated. As Choi, Lee, and Yoo (2011) noted, by providing the
diagnosis in a positive manner, professionals can help parents develop an optimistic outlook
about their child’s future.
Concepts of Cultural Excellence
The increasing cultural, racial, and ethnic diversity in our society will ideally compel
educational institutions to prepare skillful and respectful physicians and professionals who
will discuss the relevance and importance of the individual’s diversity in their clinical
practice (Tervalon & Murray-Garcia, 1998). The reasons why families may not follow
through with treatment recommendations may also be linked to the dynamic between the

50
family and the professional. It is possible to have a mismatch between the parent and the
professionals that may influence the follow-through with recommendations. According to
Borkan and Neher (1990), the relationship between parents and professionals can be strained
by different sociocultural disparities including the professional’s lack of cultural knowledge
regarding the family’s health philosophies and life experiences, and the professional’s
inadvertent and unintentional practices of discrimination and unfair treatment on the basis of
the family’s social class. This adds another layer of complexity between the family and the
professional, reinforcing the importance of cultural excellence in clinical practice.
According to Acer (2012), the definition of “culture” is under continuous and serious
debate (p. 361). One factor contributing to the debate may be the fact that social researchers
examine culture from diverse viewpoints, creating differences in meaning and leading to
various ways of understanding the concept (McFee & Degge, 1980). In the final section of
this chapter, I explain the various models of culture and the intended application of these
models when providing services to diverse cultural groups.
Cultural Safety
The conceptual framework for cultural safety originated in Aotearoa/New Zealand in
the 1980s and reflects the Maori people’s dissatisfaction with structural inequities within the
healthcare system. This framework recognizes the interconnectedness between the four
quadrants of health: physical, mental, spiritual, and emotional (Kirmayer, 2012). The term
“cultural safety” is attributed to Irihapeti Ramsden, a Maori nurse leader (Cox & Taua,
2012). Ramsden sought to apply cultural safety as a critical lens from which to examine the
interactions between Maori people and settler culture healthcare providers, while drawing
attention to the power imbalances between the two groups (Smye, Josewski, & Kendall,

51
2010). Ramsden’s definition centres on self-awareness and social positioning as these
concepts relate to the professional within the context of the professional relationship (Cox &
Taua, 2012).
The theory of cultural safety is shaped by the diversity of milieus in which it is
applied, while advancing a common objective of promoting equality in health outcomes. The
theoretical origins of cultural safety are rooted in “historical, economic, and social contexts”
(Gerlach, 2012, p. 152) that impact health-related conditions and services. Furthermore,
cultural safety is concerned with recognizing the social, economic, and political position of
specific populations within the social order. Cultural safety seeks to position health-related
concerns of Indigenous peoples within the context of the harmful impact of colonial
influences (Gerlach, 2012).
Efforts to introduce a Canadian perspective on cultural safety have led to various
professional entities proposing more locally rooted points of view on the definition of
cultural safety. The National Aboriginal Health Organization (NAHO) recognized the value
and applicability of the cultural safety framework in guiding the delivery of culturally
responsive and culturally appropriate health services. Cultural safety fosters competencies
within the professional sector that serve to enhance patient encounters through improved
sensitivity and understanding of social, political, linguistic, economic, and spiritual issues
(Kirmayer, 2012). The Indigenous Physicians Association of Canada (IPAC) and the
Association of Faculties of Medicine of Canada (AFMC) have defined cultural safety as a
position in which the professional incorporates a practice of self-reflection in order to
advance therapeutic encounters with Indigenous peoples. The Aboriginal Nurses Association
of Canada (ANAC) asserts that cultural safety is a comprehensive term that accounts for the

52
social, political, and historical context, as well as issues of racism, discrimination, and
prejudice. ANAC furthers the scope of cultural safety to include an action component, in
which inequalities are actively challenged, and a component of reflection, in which
acknowledgement is given to the inherent cultural qualities of all individuals (Baba, 2013).
ANAC published A Framework for First Nation, Inuit and Metis Nursing in 2009.
The purpose of the model is to impact “curriculum, faculty members and Aboriginal and
non-Aboriginal students” in nursing education programs across Canada (HartWaselceesikaw, 2009, p. 5). The competency model included application of “program
supports, safe learning environments, engagement and collaboration with First Nation, Inuit
and Metis communities” (Hart-Waselceesikaw, 2009, p. 5). The model emphasized
postcolonial understanding, communication, inclusivity, and respect (Baba, 2013).
Another important Canadian contribution to our understanding of cultural safety is
offered by the Competencies for Indigenous Public Health, Evaluation, and Research
(CIPHER) project. CIPHER, a partnership between the University of Victoria and Aboriginal
scholars around the world, was created to advance public health competencies that support
Aboriginal healthcare. The partnership endorses a conceptualization of cultural safety that
acknowledges historical factors that contributed to hostilities between settler and Aboriginal
cultures, the influence of colonialism on systemic issues, and their subsequent impact on the
delivery of services in the healthcare sector (Baba & Reading, 2012). The notion of cultural
safety has led to the development of culturally safe practices that seek to protect the cultural
identity and traditions of those accessing services. These practices treat culture as more than
perceived cultural norms and propose that it is rather a sociopolitical paradigm that is best
understood through the history and experiences of service users. Culturally safe practitioners

53
have an obligation to not simply recognize or be aware of each patient’s cultural belief
systems and practices, but also to be vigilant about not applying standard assumptions about
an individual or group’s cultural needs (Woods, 2010). Cultural safety presents as a process
that fosters professional competency within a cultural framework (Woods, 2010).
Cultural Competence
Scholars have documented a number of definitions of cultural competence. Pesquera,
Yoder, and Lynk (2008) described cultural competence as “raising self-awareness and
increasing knowledge about populations that provide encounters, understanding cultural and
health beliefs of different groups” (p. 118). Sue (1998) stated that “one is culturally
competent when one possesses the cultural knowledge and skills of a particular culture to
deliver effective interventions to members of that culture” (p. 441). Sue and Torino (2005)
explain that “cultural competence is the ability to engage in actions or create conditions that
maximize the optimal development of the client and client systems” (p. 8).
Efforts to support the implementation and evaluation of culturally competent
practices within the healthcare profession have led to the development and adoption of
cultural competency paradigms. Campinha-Bacote, a champion for culturally competent
practice, has developed two models, “The Process of Cultural Competence in the Delivery of
Health Care Service” and “A Biblically Based Model of Cultural Competence in the Delivery
of Health Care” (Silvestri, 2012, p. 17). Campinha-Bacote (2007) defines cultural
competence as a continuous process that supports the professional’s capacity to work
effectively within the patient’s cultural context (Campinha-Bacote, 2011). He identifies four
levels of cultural competence: unconscious in competence, conscious incompetence,
conscious competence, and unconscious competence. Campinha-Bacote argues that the

54
professional ought to view the process of adopting cultural competency as a continuous,
circular progression in which she or he seeks to become culturally competent rather than
presume cultural competency as a goal to be achieved or a state of being. Both models
exhibit five key constructs: cultural awareness, cultural skill, cultural knowledge, cultural
encounters, and cultural desire. In the Biblically Based Model of Cultural Competence in the
Delivery of Health Care, the key constructs are supported through the integration of biblical
virtues, including but not limited to love, caring, temperance, practical wisdom,
understanding, compassion, intellectual honesty, and humility (Silvestri, 2012).
According to Williams (2006), cultural competency reflects the theoretical influences
of positivism, constructivism, critical theory, and postmodernism (Lum, 2010). In addition,
Rothman (2008) suggests that culturally competent practice must show evidence of an
important skill set that includes “engagement, trust, and relationship-building; assessment;
need definition and contracting; intervention; evaluation and termination; utilization of
cultural resources; and advocacy” (Lum, 2010, p. 22). The ultimate goal of culturally
competent care is to provide quality healthcare that meets the needs of the individual
regardless of his or her cultural background.
Cross-Cultural Practice
Our cultural background influences the type of life experiences we have and thus our
assumptions about the world and ways of defining reality (Lee & Greene, 1999). Some
professionals lack insight into and awareness of their own culture and the effects it has on the
therapeutic encounter (Acer, 2012). For this reason, it is especially important for
professionals to work in concert with Aboriginal families and other ethnic groups to
understand their own personal culture and the culture of others (Acer, 2012). Greenwood

55
(2005) asserts, “If Aboriginal children are to become well and healthy adults who
meaningfully contribute to their communities and broader society, it is imperative that they
are well versed in the fundamental values of their histories and cultures” (p. 554). To thrive
in cross-cultural situations and respond effectively to diverse cultures, professionals require
greater awareness of their own unique cultural patterns and to be less ethnocentric, less
judgmental, more flexible and empathic, and better equipped with an intellectual
understanding of others (McFee, 1986).
Knowledge about the distinctive attributes of each cultural group has been
encouraged in the development of competent cross-cultural practice (Sue, Arredondo, &
McDavis, 1992). Chau (1990) proposes that the rapid growth of ethnic diversity requires the
development of a model to educate social work students for effective practice in crosscultural contexts. Chau identifies two perspectives that influence the learning of crosscultural practice: cultural pluralism and cultural ethnocentrism, concepts which students must
be familiar with in order to deliver effective interventions within a cross-cultural setting.
Briefly, cultural pluralism refers to a minority group surrounded by a larger society that
allows the minority group to maintain its cultural identities, values, and practices—
characteristics that are respected and accepted by the wider community. By contrast, cultural
ethnocentrism is the tendency to believe that one’s own cultural group is of prime importance
and to judge the values and standards of other cultures based on those of one’s own culture
(Chau, 1990).
Chau (1990) recommends the use of a “value continuum of cultural pluralism and
ethnocentrism as the basis to teach cross-cultural practice” (p. 126). The utilization of this
continuum is intended to strengthen students’ abilities to respect and accept cultural

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anomalies and the assets intrinsic in the differences, and to understand and embrace
individual differences. Chau (1990) explains that “it also provides a conceptual means for
students to develop clinical judgment as to when it is appropriate to reinforce the client’s
culturally patterned behavior or problem-solving method and when to encourage adoption of
culturally different solutions” (p. 126). It is no surprise that, in the absence of this knowledge,
practitioners from different cultural backgrounds encounter difficulties in their professional
interactions when their worldviews and assumptions about the world differ from the
worldview of their clients. Lee and Greene (1999) state that any cross-cultural encounter
ought to be viewed as an educational process on the part of both parties. Acquiring clear
ideas about how to co-construct reality in an authentic and respectful manner provides the
foundation for a successful, professional, cross-cultural helping endeavour. Gaining
competence in cross-cultural practice with Aboriginal families demands a deep awareness of
one’s own professional values and biases—an awareness which is more likely to lead to the
empowerment of human differences.
Research studies note that the context in which the communication occurs might
constrain the application of the methods, as professionals need to be cognizant of cultural,
religious, or ethical perspectives. For example, Cunningham et al. (1994) emphasize the
importance of being culturally sensitive, and Yeung and Kam (2008) point out that in the
setting of cross-cultural meetings “autonomy should not always be considered the most
important factor, but must be balanced against other values such as loyalty, integrity,
solidarity, and compassion” (p. 535).
Similarly, Levetown (2008) stresses that “it is a good idea to be aware of the general
cultural norms and taboos of the dominant subcultures attending the practice” (p. 1447).

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Levetown explains that it is generally safer to ask family members directly about their
cultural etiquette for communicating than to make assumptions. She elaborates, noting that
some cultural groups tend to be “passive with authority figures” and may not ask questions
for clarification, or worse may have a language barrier of which the professional is unaware
(p. 1447). These cross-cultural settings may well necessitate additional training that
emphasizes awareness and respect for the cultural diversity given that different cultural
groups will experience and cope with tragedy differently. The implementation of cultural
sensitivity training is possible in many of the aforementioned frameworks.
Summary
The shifts in professional practice discussed here are progressive and are welcomed
by many. However, appropriate training within organizations and at tertiary institutions
requires that existing curricula be amended in order to better reflect current practice trends in
keeping with the principles underlying patient- and family-centred care (PFCC). Ideally,
changes in training curricula will encourage professional practitioners to be both more
culturally sensitive and more effective communicators, given that research indicates the
importance of both to producing a better health outcome for children following the delivery
of a challenging diagnosis. Changes in communication strategies and increased cultural
awareness also have the potential to have a more positive impact on the experiences of
parents when faced with bad news, which in turn will make them more able and more
equipped to follow through on the clinical recommendations that come with a diagnosis.
There appears to be a gap in the literature with respect to the parental understanding
of a child’s developmental diagnosis and the implications this has for carrying out the
recommendations for the child’s well-being. It was clear from the research evidence that

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parents were often perplexed and bewildered for a host of reasons. One of the aims of my
study was to explore parents’ experiences of their child’s developmental diagnosis and what
role their understanding played in following through with the recommendations set out by the
multidisciplinary teams.
The following chapter provides an outline of the methodology used to explore the
experience of parents upon hearing their child’s developmental diagnosis. The intent of the
chapter is to describe the disciplinary framework, study design, sample, participant selection,
data collection, privacy, confidentiality, and trustworthiness of the study.

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Chapter 3

Disciplinary Framework and Methodological Approach

This chapter describes the logic of my disciplinary framework and the rationale for
my chosen methodology “interpretive description”—it defines the internal logic of the social
work discipline and the influence of social constructionism as it offers a theoretical
framework that guided my study. My role as the researcher, recruitment strategies, ethical
considerations, data collection methods, data analysis, and verification strategies are
discussed. It is important to note that the use of the pronoun “I” in my dissertation is
congruent with my chosen qualitative framework—interpretive description. Webb (1992)
writes that the “use of the first person is required in keeping with the epistemologies of the
research and in the pursuit of reflexivity” (p. 747). He emphasizes that the first person
standpoint is pivotal to qualitative inquiry given that the role of the researcher influences,
guides, and impacts both the course of the research and the conclusions reached.
Social Work Discipline
Social work practice is broad in nature and scope, as human behaviour is complex
and individuals encounter various challenges throughout the lifespan. Social work
practitioners draw upon a wide array of theories, frameworks, perspectives, and modalities to
provide a thorough assessment related to the various challenges humans face at the micro,
mezzo, and macro levels. Regardless of context, a quality assessment is an important skill
within social work practice as it leads to effective interventions (Heinonen & Spearman,
2010; Regehr & Glancy, 2014; Sheafor & Horejsi, 2012). The International Federation of
Social Workers depicts social work practice as follows:
Social work is a practice-based profession and an academic discipline that promotes
social change and development, social cohesion, and the empowerment and liberation

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of people. Principles of social justice, human rights, collective responsibility and
respect for diversities are central to social work. Underpinned by theories of social
work, social sciences, humanities and indigenous knowledge, social work engages
people and structures to address life challenges and enhance wellbeing. (Hare, 2004
p. 3).
The disciplinary framework “person in environment” distinguishes the social work
profession from other related human service professions as other disciplines predominantly
focus on a single dimension of the person (Sheafor & Horejsi, 2012). The perspective
“person in environment” rests on the notion that the social worker focuses on several
interrelated dimensions of the person (biological, emotional, social, familial) in conjunction
with various aspects of their environment (economic, physical, family) (Heinonen &
Spearman, 2010; Saleebey, 2013; Sheafor & Horejsi, 2012). Given the multiple levels of
influence that contribute to a particular issue, it is not possible to identify a single practice
modality and/or theory that could adequately address the plethora of nuances and issues that
configure the distinct human situation. As such, social workers build professional
competency by weaving a variety of theories, ethical knowledge, practice wisdom,
perspectives, and frameworks in an attempt to fully understand and assist the individual or
family to adapt to and manoeuvre challenges in relation to their situation. Sheafor and
Horejsi (2012) describes this blend as “one’s theoretical orientation to practice” (p. 35).
Within the context of my research study, I borrowed relevant sources of knowledge from my
disciplinary epistemology, which framed my research study and encouraged a thoughtful,
reflexive use of my orientation to practice to generate findings that were relevant to a clinical
setting (Thorne, Stephens, & Truant, 2016).

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Practice Wisdom
Social work practice is facilitated through the application of social work core values,
ethical and philosophical principles, theories, and practice skills (CASW, 2008) that help
shape the knowledge base for social work practice. Social work is scientific but not in the
sense of a pure science, as it is an applied professional science (Sheafor & Horejsi, 2012).
Among the many ways of knowing there is one particular form of knowledge coined
“practice wisdom.” In essence, practice wisdom is “derived from the worker’s personal
observations and the collective experiences from several generations of social workers who
informally share their understanding with colleagues” (Sheafor & Horejsi, 2012, p. 30). Chu
and Tsui (2008) claim it is “the knowledge acquired from direct practice experience and not
from the direct formal application” (p. 49). In fact, other scholars promote the exploration of
practice wisdom or tacit knowledge as a new epistemology of applied practice research
(Millstein, 1993; Rosen & Zeira, 2000; Scott, 1990).
The reliance on practice wisdom was one of the tenets of the disciplinary knowledge
framing my applied research study—transferring knowledge obtained in one context (child
welfare) to a different environment (clinical setting) to inform practice (Fook, Ryan, &
Hawkins, 2000) would contribute to the generation of knowledge. In short, I witnessed the
destruction and confusion that families faced when a child protection social worker
communicated the required actions to protect their child and/or children. Within this tangled
web of experiences, parental misunderstanding sometimes occurred, resulting in tragic
outcomes. To make sense of a similar phenomenon in a new context, my practice wisdom
provided a viable standpoint on my rationale for exploring parental experiences of a child’s
developmental diagnosis communicated by a multidisciplinary team.

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As a child welfare social worker, I was responsible for making professional
judgments and decisions about child safety, family functioning, risk factors, and overall
needs of the family with the central emphasis placed on the best interest of the child. My
professional role granted me a unique entry into the most private areas of parents’ and
children’s lives. It was vital, therefore, that I was able to justify the decisions I made at the
various stages of assessment and intervention. Family situations were both complex and
extraordinary, as the situations often involved several social issues such as domestic
violence, substance misuse, mental health issues, and poverty. My assessments were based
on a series of professional casework activities, drawing from various sources of knowledge in
an attempt to explain why a certain action resulted in a particular behaviour. It became
evident that social work is not a pure science and ideas had to be adapted or abandoned in
light of changing circumstances and new information garnered through the ongoing
engagement between the social worker and the family. Each child, parent, and situation
warranted a different practice approach that was designed to suit the circumstance of that
particular family unit. As such, the efficacy of evidence that came from the client’s point of
view (practice-based evidence) rather than from the determination of the practitioner often
resulted in the best intervention.
Social Work and Epistemology
According to Willis (2007), epistemology is “concerned with what we know about
reality (however that is defined) and how we know it is real.” Epistemology is about
knowledge or simply “the theory of knowledge” (Willis, 2007, p. 10). Who knows more
about a person’s situation than the person experiencing the reality? Supporting this question
is a guiding social work principle which states: “the social worker should consider clients as

63
experts in their own life” (Sheafor & Horejsi, 2014, p. 53). Too often, social workers and
other helping professionals rely too much on theoretical orientations of human functioning
and negate to elicit the client’s understanding of the situation (Sheafor & Horejsi, 2014;
Hepworth, Rooney, Rooney, & Strom-Gottfried, 2016). Wilson (2008) asks, “What part of
this reality is worth finding out more about . . . what is ethical to do in order to gain this
knowledge, and what can this knowledge be used for?” (p. 34). As noted earlier, the
knowledge generated from my research was intended to advance clinical practice to improve
health outcomes for children and families who receive services from the CDBC clinical
teams in the near future. The skill of social work practice lies in practice models designed to
explore the client’s perspective—the relationship between the social worker and the client is
one of collaboration and mutual expertise. In essence, subjective and experiential knowledge
is fundamental to social work practice as it is co-constructed between the social worker and
the client—social work is collaborative and explorative.
In the realm of human complexity, it is important to conceptualize all sources of
knowledge as tentative, as judgments based on the best information available at a given point
in time can be scrutinized and refuted in the light of new information or evidence to the
contrary (Trevithick, 2008). The knowledge base of social work—whether abstract, actionbased or intuitive—ought to be viewed in a manner that complements the variations of
knowledge versus what particular source of information trumps the other.
Social Constructionism
The intellectual underpinnings of the social work profession share a number of
common features within social constructionism. What does this mean in the context of my
research? My research was guided by the internal logic of the social work discipline and

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social constructionism, which provided a way of examining multiple angles of vision on the
factors that played a role in the parental understanding of a child’s developmental diagnosis.
Social constructionism is based on the assumption that all meaning in the world is connected
to a social understanding of the process. Social constructionism allows research to proceed
with the assumption that reality is socially constructed, which gives value to the context in
which the individual makes sense of his or her world (Creswell, 2003). A constructionist
perspective emphasizes that meaning is not constructed exclusively by the person but rather
is socially constructed (Barkway, 2001; Thorne, 2008). Hoffman (1990) sets out her
understanding of social construction theory this way:
The theory posits an evolving set of meanings that emerge unendingly from
interactions between people. These meanings are not skull-bound and may not exist
inside what we think of as an individual “mind.” They are part of a general flow of
constantly changing narratives. Thus the theory bypasses the fixity of the model of
biologically based cognition, claiming instead that the development of concepts is a
fluid process, socially derived. (p. 2)
Rather than pursuing a singular truth such as one “right way” to do something, social
work seeks to uncover truth-claims and draw upon multiple ways of knowing and evidence to
determine the best way to intervene within a particular context. A unique element of
constructivism is the significance of the dialogue between the researcher and the participant,
where a deeper meaning can be unleashed (Ponterotto, 2005). Relevant theories, prior
knowledge, and experience brought to a clinical interaction are valuable and inform that
interaction, and it is in the collaborative nature of the social worker-client interaction that an
iterative process of knowledge development occurs. As a consequence of my personal health

65
diagnosis (cancer) coupled with my professional career as a social worker, I was able to
engage in a dialogue that recognized first-hand the complexities families face when receiving
a diagnosis. In essence, it was the collaborative dialogue (researcher and participants) that
co-constructed the interpretation of the research findings (Ponterotto, 2005).
How people explain their lives, the world they inhabit, and their interaction with
others can vary greatly and lead to fundamental differences in the way they perceive events
and the understanding and meaning they assign to experiences (Trevithick, 2008). For
example, there was no single or predictable way that parents described their experience;
rather, their description was unique to a variety of experiences leading from the shaping of
their beliefs, hopes, past experiences, support system, and their overall situation. They added
richness to why and how delivered messages further facilitated or complicated an already
challenging adaptation process during a crucial developmental stage of parenting.
In sum, my research disciplinary framework coupled with a social constructionist
perspective rooted in a subjectivist epistemology is congruent with interpretive description—
applied research design (Thorne, 2008). Parental experiences were viewed in the context of a
complex healthcare system to develop clinical approaches that accurately reflected tangible
ways clinicians can effectively provide quality care.
Research Design
The purpose of my study was to examine the experiences of parents who received a
diagnostic assessment and recommendations by way of one of the CDBC clinical
multidisciplinary teams situated across northern British Columbia. The small body of
relevant research on this topic approaches it from various angles and examines different
stages of the diagnostic process. However, questions remain in relation to the parental

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understanding of a child’s diagnostic assessment subsequent to the professional clinical
delivery and how this influenced the parent’s implementation of their child’s clinical
recommendations. In the previous section, I outlined an intellectual structure that served as
the theoretical foundation upon which I made design decisions about my research inquiry.
Social work’s disciplinary epistemology and internal logic structure formed the scaffolding
influenced by social constructionism and guided loosely by systems theory. This structure
achieved the generation of practical options for enhancing the practice of delivering a child’s
developmental diagnosis and supported the rationale for explicit supportive resources beyond
the diagnostic disclosure. Using social work’s disciplinary epistemology as the theoretical
scaffolding within which to frame this study required a methodology that provided
opportunities for description, interpretation, and pragmatic action (Thorne, 2008). As such,
my study drew on an interpretive method of research that addressed a particular experience in
a clinical setting from the perspective of the service recipients (parents).
The research design that governed my study was a specific qualitative method of
inquiry known as interpretive description (Thorne, Kirkham, & MacDonald-Emes, 1997).
Interpretive description has roots in several academic disciplines such as sociology,
anthropology, and psychology. Within these specialties, specific dominant qualitative
methodologies (grounded theory, ethnography, and phenomenology) are often selected to
guide one’s methodological trajectory (Thorne, 2008; Thorne et al., 1997). Qualitative
scholars who have examined various aspects of healthcare often subscribed to one of the
aforementioned qualitative approaches—despite concerns related to the incongruence
associated with the specified methodological choice (Morse 1989; Thorne, 2008). As a result
of this incompatibility, several nursing scholars who researched clinical aspects of healthcare

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service delivery felt that the traditional qualitative approaches were not an appropriate fit and
jeopardized the rigour of the study (Thorne et al., 1997). Hence, they voiced the need for a
different methodological approach that fostered the creation of specific types of applied
research knowledge (Thorne, 2008). Interpretive description was conceived and has gained
popularity as a useful method for generating new insights in clinical settings (Thorne, 2008;
Thorne et al., 1997). Thorne et al. (1997) described interpretive description as a noncategorical methodological approach to develop clinical understanding with a core emphasis
placed on generating knowledge that informs clinical practice.
Selecting a research methodology to best fit the research question is important
because the research design forms the framework for data collection and analysis (Migiro &
Oseko, 2010; Willis, 2007). As with most research studies, the research question guides the
research methodology (Patton, 2005). After I reviewed and researched the features and
parameters associated with qualitative research methodologies—hermeneutic
phenomenology in particular—it was evident that interpretive description presented the best
framework to explore subjective experiences in a clinical context that not only had relevance
for clinicians who communicate a diagnostic finding but the health implications for children
and families. Furthermore, interpretive description recognizes that the “clinical mind tends
not to be satisfied with “pure” description, but rather seeks to discover associations,
relationships and patterns within the phenomenon that has been described” (Thorne, 2008 p.
50). My research highlighted professional factors that facilitated or impeded parental
understanding in the context of a clinical multidisciplinary team delivering a child’s
diagnostic finding. The literature review, theoretical alliances, social work’s disciplinary
epistemology, and my own positioning of ideas and experiences in relation to understanding

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a child’s developmental diagnosis provided a theoretical scaffold which framed my study.
Theoretical scaffolding is the term employed to indicate the foregrounding and scholarly
positioning within a study (Thorne, 2008). My theoretical scaffolding was anchored within a
qualitative methodological design—known as interpretive description (Thorne, 2008).
Interpretive description is based on a logic model design that supports the generation
of applied discipline knowledge that ought to be executed in a coherent manner creating
meaningful findings (Thorne, 2008). In other words, interpretive description does not adhere
to a prescriptive set of rules that dictates one’s research trajectory (Thorne, 2008). However,
the clinical context and the discipline shape the lens through which the data is collected and
analysed. Thorne (2008) explains, “as a method for generating knowledge pertaining to
clinically derived phenomena interpretive description explicitly locates itself within the
applied disciplinary domain” (p. 68). My research cuts across several applied discipline
domains, as the comprehensive diagnostic assessments that families received were informed
by a multidisciplinary assessment which may or may not have included the following
healthcare professionals: pediatrician, psychologist, social worker, speech language
pathologist, and/or occupational therapist. Given the various healthcare professionals at play
in this clinical context, my research involved the breadth of several disciplines that are
recognised by the School of Health Sciences. For example, Health Sciences is
“interdisciplinary in nature with the intent of addressing the needs of health science
researchers and professionals” in the delivery of healthcare to improve health issues in
northern, remote, and First Nations communities (UNBC, 2016). The quality of a clinical
encounter in a healthcare setting is of paramount importance as it plays a role in one’s health
outcomes. My research sought to generate insight from the parental perception to inform

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clinical practice where healthcare clinicians on multidisciplinary teams deliver a child’s
developmental diagnosis—to improve health outcomes for children and families in a
northern, remote community. Interpretive description has a pragmatic focus in which the
findings generated are relevant to clinical practice and have application potential (Thorne,
2008). Thorne (2008) explained:
We desperately need new knowledge pertaining to the subject of experiential, tactic,
and patterned aspects of human health experience—not so that we can advance
theorizing, but so that we have sufficient contextual understanding to guide future
decisions that will apply evidence to the lives of real people. (p. 36)
Interpretive description moves past major description and allows for meanings and
explanations to be generated, thus enhancing clinical understanding (Thorne, 2008).
Interpretive description is consistent with my ontological and epistemological stance for this
study, hence it offered the most compatible approach to forming an understanding of the
individual and shared experiences of the parents—as interpretive description seeks to
understand shared experiences while also taking into consideration the variation between
individual experiences (Hunt, 2009; Thorne et al., 1997; Thorne, Kirkham, & O’FlynnMagee, 2004; Thorne, 2008).
My research was informed by the literature review, theoretical alliances, social work
disciplinary epistemology, and my own positioning of ideas and experiences in relation to
parental understanding of a child’s developmental diagnosis (Thorne, 2008b, 2013a).
According to Corey, Corey, and Callanan (2003), ethics refers to a set of moral
principles, rules, or standards governing a person or a professional discipline. The following
ethical framework was implemented during the course of my research project.

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Ethical Considerations
Before beginning my research study, approval was granted by the University of
Northern British Columbia Research Ethics Board and the Northern Health Research Review
Committee (see Appendix). Batchelor and Briggs (1994) note that, in cases where
researchers undertake studies in the absence of an ethical framework, they render themselves
ill-equipped to manage the unpredictable nature of qualitative research. As with any research
involving human subjects, ethical considerations are primary, and I made sure to follow all
ethical guidelines from the outset of my research through to the end. I adhered to the
principles of due diligence and full disclosure throughout in order to ensure that my
participants were fully informed and understood that to which they had consented (Banner &
Zimmer, 2012). I also referred to the four guidelines characterizing various codes of ethics
pertaining to the protection of human research subjects, as outlined in Christians (2005): (a)
informed consent, (b) avoidance of deception, (c) privacy and confidentiality, and (d)
accuracy (p. 144). Prior to the face-to-face interviews, I sent the informed consent and
information sheets to the participants via email for their review so they could ask questions
about the research and think about whether they truly wanted to participate. I let the
participants know that at any time during the interview process, they could ask to stop the
interview or choose not to continue without penalty.
Morse, Barrett, Mayan, Olson, and Spiers (2008) look at the way qualitative
researchers conceptualize the inherent risks in qualitative interviews. They point out that risk
is not absent once the participant signs the consent form, and they note that a risk assessment
should not be confused with being a one-time event but rather is necessary throughout the
research interview. I took care to ensure that, at all times, my participants’ well-being was

71
paramount. As such, during the interview, I frequently asked my participants how they were
feeling to ensure there were no areas of emotional distress, and I also paid attention to their
non-verbal cues. As noted above, participants were reassured in advance that they could
notify the researcher, either by email or by telephone, if they decided to withdraw from the
study, and they would not be required to explain their reasons. In the event that a participant
decided to withdraw following data collection, I agreed ahead of time to destroy the data
immediately on receiving notification. No participants withdrew from my research study.
Confidentiality
Privacy and confidentiality were addressed in the consent form and verbally reiterated
to the participant before the interview. I informed my participants that I was legally
obligated to report any information relating to child or elder abuse, and if I had any reason to
believe that the participant would cause serious harm to another person I would make a
report to the appropriate authorities. Neither action was warranted on the basis of any of my
interviews. To maintain the anonymity of the participants, I assigned each participant a
pseudonym, in keeping with the standards set out by Orb, Eisenhauer, and Wynaden (2001).
I assured each participant that information shared during interviews would remain
confidential and explained that I, the researcher, would be the only person with access to
their name and contact information. Although I used a professional transcriptionist to
transcribe each interview, the transcriber only knew the participants by their pseudonym.
The transcriber was asked to sign a Transcriber Confidentiality Agreement (Appendix); I
reviewed the terms of this agreement with the transcriber and emphasized the importance of
confidentiality.

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Equally important to me were the emotions that I expected would be triggered by the
topic, given the likelihood of painful memories associated with hearing the delivery of a
child’s developmental disability. This occurred during two of my interviews. I saw my
primary obligation as being responsive to the participant’s vulnerability and rights. In both
cases, I stopped the interview and assessed the best interests of my participants, an
assessment which was conducted jointly, allowing the participants to drive the shared
decision making. And in both cases, the participants repeatedly assured me that they wanted
to continue with the interview. I also offered to refer the participants to counselling, and I
provided a written note with contact information for the appropriate providers. Prior to the
participant leaving the interview and/or the premises, I ascertained whether the participant
had fully regained composure and left in relatively good emotional shape. In both cases, I
debriefed with my supervisor and used my journal to document the experience, in part to
ensure that I remained grounded and did not participate in countertransference.
I stored the digital copies of the interview data on my computer at UNBC, which I
use for professional purposes and which is linked to a secure server with password and antivirus protection. I have stored the hard copies of the data in a locked cabinet in a locked
office, also at UNBC. On completion of my PhD, all audio recordings will be destroyed, and
any remaining paper copies will be shredded. The electronic file containing analysed data
will be stored for five years on the UNBC server under my account, at which point the
electronic file will be deleted.
I believe that I had a certain advantage with respect to the complexities of conducting
ethical research, given my familiarity with my own professional code of ethics and my ability
to translate those guidelines into my research project. As a social worker, I abide by the

73
British Columbia Association of Social Workers Code of Ethics, which is comprised of
eleven principles. The first principle ultimately guided my research: “A social worker shall
maintain the best interest of the client as the primary professional obligation” (British
Columbia Association of Social Workers, n.d.).
Role of the Researcher
One of the hallmarks of qualitative research relates to the concept that the researcher
is the instrument (Guba & Lincoln, 1981). Interpretive description accepts the theoretical
and practical knowledge that a researcher brings to their research study. In fact, Thorne
(2008) expresses the importance of the researcher locating him or herself within the research.
In other words, what kind of “intellectual integrity” contributed to the development of the
researcher’s area of interest (Thorne, 2008, p. 69)? Interpretive description assumes that the
researcher has an affiliation to an applied discipline, which aligned with my scholarly
pursuit, coupled with my previous professional role as a practitioner in an organizational
setting.
There were a number of factors that influenced my research area before I embarked
on this particular study. Initially, my curiosity was piqued by my PhD faculty advisor’s ideas
and concerns about how families experienced the process of receiving a comprehensive
diagnostic assessment by way of the CDBC multidisciplinary team. This clinical interest,
coupled with my professional expertise in child welfare practice, motivated me to explore
this human experience within the healthcare system. As a former professional child
protection social worker, I witnessed the destructive consequences that families and children
faced when a parent lacked an understanding of the service recommendations that were
deemed necessary to protect their children. My professional role as a Senior Practice Analyst

74
(quality assurance) with the Ministry of Children and Family Development provided the
opportunity to gain insight into an ongoing problem that appeared to exist in professional
practice. My research question morphed out of my personal and professional relationship to
the subject area. Parental understanding of a child’s diagnostic finding was fundamental in
order to provide optimal care to the child. In essence, a solid understanding enables the
parent to connect the child to the most appropriate services devised by the clinical
multidisciplinary team.
My approach with my participants was to learn as much as I could by way of open
and honest dialogue. I wholeheartedly endorse the notion that the participants were experts
of their experiences, and that there were multiple truths. I was aware that decisions I made at
each stage of the research trajectory were influenced by my world view. Furthermore, my
professional training equipped me with a number of skills fundamental to working with
diverse populations, such as relationship-building, active listening, interviewing, and
engagement—all of which I deployed in my role as a researcher. My professional experience
conducting interviews bolstered my confidence when it came to collecting interview data. A
number of scholars have looked at interview process in the context of qualitative inquiry, and
several enumerate what they consider to be fundamental skills central to performing a quality
interview. The majority of these have been incorporated in the Code of Ethics for the
Canadian Association of Social Workers (2005) and informed the way in which I conducted
my doctoral research.
Recruitment Strategies
Recruiting individuals for the purposes of research can be achieved in various ways.
Sampling is one way of selecting individuals from the general population. When it comes to

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sampling, there are important differences between the strategies used in qualitative and
quantitative research: the rationale behind the logic, the strategies employed, and the purpose
of sampling varies significantly (Mayan, 2009; Patton, 2005). My review of the literature
indicated that a purposive sampling technique would be most appropriate for this study given
the methodology I chose to use (Maxwell, 2005; Patton, 2002; Thorne, 2008). Purposive
sampling allows for the selection of “information-rich cases” that will produce “insight and
in-depth understanding rather than empirical generalizations” (Patton, 2002, p. 230). The
following eligibility criteria was developed: The parent


may be the birth parent, or the parents of an adopted-at birth child or youth under
the age of 19 years who has been previously assessed by the CDBC team;



must have an open file with the Complex Developmental Behavioural Conditions
Team; and



must be a resident of Northern British Columbia.

The following steps were taken to recruit participants once I received institutional
approval from the appropriate ethics committees:


The CDBC team in Prince George, British Columbia, was selected to assist with
the recruitment of participants because the multi-disciplinary assessment team
provides comprehensive diagnostic assessments to children and youth in Northern
British Columbia.



Prior to submitting my proposal to the ethics committee, I met with the CDBC
manager who oversees the team to discuss my research and confirm support for
my project.

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

Once approval was given by the appropriate ethics committees, I arranged another
meeting with the CDBC manager to submit and discuss my list of criteria for
potential participants, which made it possible to identify prospective participants
in an efficient way. At this point, we also identified a “gatekeeper” or contact
person, in keeping with a qualitative research method where gatekeepers are often
used to assist the researcher in gaining access to participants (Hatch, 2002).



The appointed contact person from the CDBC team assisted with the recruitment
process by contacting families during clinical follow-up calls and informing them
about the research. Prospective participants then had to choose whether to contact
the researcher directly or provide verbal consent allowing the contact person to
email their information to the researcher.



I telephoned the potential participants to schedule a day, place, and time for the
interview at the convenience of the participant.



Once the interview was completed, the participant received a $75.00 gift card as
an honorarium, upon which they signed a document to acknowledge having
received remuneration (see Appendix).

The sample size used in quantitative studies is often larger than that in qualitative
research studies because the researcher conducting qualitative research is generally interested
in examining a particular phenomenon from a detailed and in-depth perspective which
warrants a smaller sample size (Thorne, 2008). According to Patton (2005), qualitative
inquiry typically focuses on a relatively small sample, where quantitative inquiry most often
emphasizes the importance of larger, random samples in the search for general trends.

77
Crouch and McKenzie (2006) note that qualitative research is more concerned about the
meaning of experiences than about testing hypotheses.
I chose to work with a sample of approximately twenty participants, a number that
was contingent on whether or not I reached the point of redundancy before or after I reached
my estimated target sample size. Half way through my recruitment process a decision was
made to implement a “snowball sampling” recruitment process to identify additional
participants given my sample size was below my intended target range. The purpose of
snowball sampling is to identify prospective participants by way of their connections to
known individuals, such as colleagues, friends, and acquaintances who understand the
research goals and can make recommendations based on their knowledge regarding the
eligibility of potential subjects (Patton, 2002). In my case, I solicited the assistance of a
colleague to help identify three parent participants that likely met the eligibility criteria.
Denzin and Lincoln (2011) advise that the cessation of new themes reveals the presence of
saturated data. Once I had conducted and analysed the 17 interviews, I felt confident that no
new themes or information were emerging from the data, and I concluded that I had reached
the point of saturation.
Details of Data Collection
The pioneers behind this method recognize the relationship between interpretive
description and the other traditional qualitative approaches. Thorne et al. (2004) explained:
“the design strategies in interpretive description borrow strongly from some aspects of
grounded theory, naturalistic inquiry, and ethnography drawing on values associated with
phenomenological approaches inherent in the methods of data collection” (p. 6). I used a
semi-structured interview guide to gather data. Interpretive description depends on

78
subjective experience from multiple angles of vision (Thorne et al., 2004). Interviewing
several participants and hearing various experiential accounts led to a greater understanding
of the clinical experience.
I adopted a semi-structured interview format because it enables the participant to
freely express their unique views in their own language (Cohen & Crabtree, 2006; Olson,
2011). The interviews were loosely structured around the main research question and study
aims, with follow-up questions designed to elaborate on thoughts that were considered
important or relevant (Creswell, 2003; Rubin & Rubin, 2011; Warren, 2002). The interview
questions also served to keep both the interviewer and the participant on track with respect to
the goal of the research (Rubin & Rubin, 2011). Interviews were scheduled to allow at least
one hour per session. They were recorded using two digital voice recorders in case one
malfunctioned during the interview.
Interview Protocol
I developed an interview protocol and practised my interview techniques with a
graduate student before commencing the research interviews—a strategy identified by
Chenail (2011) known as interviewing the interviewer. This rehearsal afforded the
opportunity for constructive feedback, which led to improvements (i.e., learning the merits of
when to be silent in the course of the interview). In addition, my dissertation committee and
the manager and clinical coordinator of the CDBC team reviewed and provided feedback on
the questions I developed to address the research topic. The feedback resulted in the
identification of weakness in particular questions, which prompted me to adjust the questions
and include additional questions (see Appendix).

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I was comfortable and relaxed during all of the interviews, and I was acutely aware
that co-creation involved a dialogue between the participant and the researcher to foster
understanding. The intention behind my conversational style was to foster a connection
between myself (the researcher) and the participants with the expectation of eliciting datarich information in keeping with the idea that “both the interviewer and the study participant
influence the quality of the information obtained” (Olsen, 2001, p. 23). Throughout the
interviews, I engaged in active listening and reflection, and I used prompt phrases when
required in order to encourage participants to respond openly without being influenced by my
own assumptions. Also, I clarified any information that I thought had not been understood
by rephrasing it in clearer terms.
As the interviews proceeded and my understanding evolved, I became better at
intuitively guiding the participants to stay on track in relation to the research question and
aims. In interpretive research, data analysis begins during data collection in the course of
active listening, reflection, clarification, and intuiting (Mayan, 2009).
Interview Procedures
Participants were contacted by telephone by the clinical coordinator of the Prince
George CDBC team, and they were informed about the particulars of my research study. On
the basis of their verbal approval, participant information was sent to the researcher.
Following this, participants were contacted by phone to set up a mutually convenient time for
a face-to-face interview. Participants were asked to choose a quiet setting where they felt
they would be comfortable. Before beginning the interview, participants were provided with
an information sheet that explained the purpose of the research, along with an informed
consent form approved by University of Northern British Columbia Review Ethics Board and

80
Northern Health Research Review Committee (see Appendix). I asked each participant if
they would prefer to read the information themselves or have me read it out to them, to
ensure that participants with literacy issues understood the information. One participant had
me read the information.
A professional transcriptionist was hired to transcribe all the audio recordings of
interviews. To verify accuracy of the transcriptions, I reviewed them by listening to the
recordings and reading the transcript simultaneously so that I could make any corrections
needed to prepare for the data analysis (Creswell, 2003).
Data Analysis
Crabtree and Miller (1999) assert that if certain basic guidelines are examined prior to
the execution of the data analysis the likelihood of a successful process increases
significantly. The authors speak about the importance of knowing yourself and your biases,
the ability to identify and know your research question, ongoing pursuit of alternate
interpretations, flexibility, draining the data, celebrating differences, and pursuing critical
feedback as the lone analyst may run the risk of missing vital nuances. The adoption of these
guidelines coupled with thematic analysis (Braun & Clarke, 2006; Guest, MacQueen, &
Namey, 2012) led to meaningful findings. The purpose of an interpretive descriptive analysis
is to take the data and deploy your innate analytic and conceptual capacities that turn data
into credible and meaningful findings (Thorne, 2008).
I generated findings by using the thematic analysis approach by Braun and Clarke
(2006). Given that the primary purpose of interpretive description is to produce clinical
knowledge relevant to a health context (Thorne, 2008), thematic analysis was an appropriate
method for my research study—as the emphasis is also on the importance of practical

81
outcomes (Boyatzis, 1998). Thematic analysis is a flexible and accessible method for
analyzing qualitative data that uses six phases to identify themes within data (Braun &
Clarke, 2006). These six phases are as follows:
Phase 1: Familiarize yourself with your data. During this first phase, I read and reread the interview transcripts to be familiar with the raw data. Reading and re-reading
transcribed data enables the researcher to become more familiarized with raw data (Creswell,
2003; Patton, 2002; Thorne, 2008). Braun and Clarke (2006) strongly encourage researchers
to engage fully in this phase and caution against a skimming approach, as this stage forecasts
the trajectory of the analysis. The dance of reading and re-reading is a time-consuming
endeavour, but it reaps dividends for the researcher. Following the formal collection of my
interview data, I built insight by reading and re-reading, examining, and re-examining—by
going back and forth between my observations and the interview data. I re-read all interview
transcripts at least three times and reviewed my notes for each participant. I also listened to
each audio recording a number of times, while simultaneously reading the transcripts. This
level of immersion at the early stages of the data analysis provided me a “developing sense of
the whole beyond the immediate impression of what it is that they contain” (Thorne, 2008,
p.143).
Phase 2: Generating initial codes. The second step of the data analysis required the
generation of initial codes. This phase revolves around the “production of initial codes from
the data” (Braun & Clarke, 2006, p. 18). During this phase, the researcher searches for
patterns by reading the interview transcript thoroughly before coding. There are several
ways of coding; “note writing,” “highlighting,” and using “post-it” notes are some of the
ways to code parts of the data set (Braun & Clarke, 2006). For the purpose of my study, I

82
printed each participant’s interview transcript, highlighted similarities and differences within
the data, and documented initial codes by noting aspects the participants emphasized, the
impact of the delivery of the diagnosis, and other relevant statements made by the
participants which were placed into labelled paragraphs that contained information relating to
each particular point being articulated. In addition, I captured the components that piqued
my interest that were linked to my research question and aims. This process allowed me to
see new points of entry into the data.
Phase 3: Searching for themes. On completion of the coding of the entire data set,
it was time to organize the coded data into themes. Coding all data fragments and combining
them according to patterns was a crucial step in this phase. Applying visuals, which entails
labelling each code onto cards and placing them into “theme piles,” is recommended during
this step (Braun & Clarke, 2006). The process of sorting codes into “theme piles” is intended
to lead the researcher to the identification of “overarching themes,” “sub-themes,” and
themes that do not align in either category (Braun & Clarke, 2006). I used several Word
documents to assist with my theme piles—phrases were selected from the transcripts, copied,
and added to the appropriate document where they were coded under summary phrases
aimed at identifying categories and linkages in the data, and I explored relationships and
patterns between participants. At the conclusion of this phase, the researcher can discover
the overarching themes, sub-themes, and themes that are not relevant to the topic under
investigation. It is recommended not to abort any data at this stage, as the application of the
next phase may highlight the need to syndicate, enhance and isolate, or remove a theme
(Braun & Clarke, 2006).

83
Phase 4: Reviewing themes. During this stage, the researcher may reach
conclusions that dictate the manoeuvring of some of the “candidate” themes (Braun &
Clarke, 2006, p. 20). This action was completed by selecting phrases that seemed to answer
my original research questions and setting them aside on a separate document associated with
each participant. I then copied all of the significant phrases into one document, which I
continued to analyse for meanings embedded within the text. At this point, I reviewed the set
of preliminary themes I had established and ensured that the data contained in the themes
were cohesive. If the researcher’s assessment of the theme reflects a consistent pattern, the
researcher proceeds to the next level of this particular phase. If the themes are not cohesive,
the researcher is required to re-work the theme until achieving the desired outcome (Braun &
Clarke, 2006). This phase of the analysis consisted of me reviewing all the themes and
confirming that they linked to my overall research question and aims, which consisted of
identifying factors that affected the delivery of their child’s diagnosis during the clinical
encounter, and the factors that impacted the parental pursuit of the clinical recommendations
subsequent to the family meeting. It is not unrealistic to re-code from the data set, as coding
is an “ongoing organic process” (p. 21). In fact, this phase of the analytic approach presented
me opportunities to refine the themes and reorient the inquiry according to new insights that
were developed. At the end of this phase, I felt confident that I had a solid read on the
themes and the overall narrative of the data.
Phase 5: Defining and naming themes. At this point, the researcher assigns each
theme a title or name that is succinct, forceful, and instantly provides the reader with an idea
of the nature of the theme (Braun & Clarke, 2006). I developed a preliminary analytic
structure from the provisional themes to form the basis for identification and exploration of

84
commonalities and differences among and between the experiences of participants. Ongoing
analysis was conducted until I refined the specifics of each theme. This was accomplished
by a layered reflection on the text, achieved by writing and re-writing where I accessed a
higher level of critical reflectivity.
Phase 6: Producing the report. This phase provided the final opportunity for
analysis. My method for engaging in an ongoing reflexive process was to write my
experiences and observations into a journal, which assisted with “the continuous and
interactive” nature of process throughout my research. Here, I documented areas of
understanding, misunderstanding, and possible interpretations, which at times prompted me
to consult again with my participants. In this way, I was able to highlight the experiences
and identify themes that participants articulated. The responses of the participants to the
interview questions yielded three overarching themes and several sub-themes related to each
overarching theme, for a total of twelve subthemes. The three overarching themes—clinical
encounters, the manner of the delivery, and where we go from here—are discussed in further
detail in the following chapters, as per Braun and Clarke’s (2006) recommendation that
“extracts need to be embedded within an analytic narrative that compellingly illustrates the
story that you are telling about your data, and your analytic narrative needs to go beyond
description of the data, and make an argument in relation to your research question” (p. 93).
Verification Strategies
It is vital that qualitative research is conducted in a rigorous manner. Qualitative
researchers have long debated whether rigour can be applied to qualitative interpretive
research given that it does not comply with the positivist understanding of rigour. Some
scholars even consider applying similar standards of rigour to be potentially damaging to the

85
data (Mayan, 2009). The search for legitimization and representation in qualitative research
has resulted in ongoing discussion and a call for appropriate criteria for the evaluation of
qualitative results (Pillow, 2003; Polkinghorne, 2007). There is a proliferation of such
criteria in the literature, which can be daunting when trying to work out the best ways to
ensure that one’s own qualitative research is rigorous. To this end, Cohen and Crabtree
(2008) reviewed the healthcare literature and identified seven important dimensions of
evaluative criteria for qualitative research:
1.

Carrying out ethical research.

2.

Importance of the research.

3.

Clarity and coherence of the research report.

4.

Use of appropriate and rigorous methods.

5.

Importance of reflexivity or attending to researcher bias.

6.

Importance of establishing validity or credibility.

7.

Importance of verification or reliability.

A number of processes were adopted to demonstrate rigour throughout my research.
There has to be congruence between the research question and the components of the method
in order to establish a unified research framework (Mayan, 2009; Morse, 1999). Throughout
my dissertation, I demonstrated clarity and coherence by identifying my chosen research
paradigm (relativist/constructionist) and establishing my methodological framework
(interpretive description); I clarified the reasons for my chosen paradigm and methodological
approach to my research and aligned this approach with my data collection method
(interviews) and the analytic approach (thematic analysis).

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Several sources identify a number of hallmarks that are used to assess and
demonstrate quality research: credibility, relevance, fittingness, triangulation, thick
description, auditability, confirmability, prolonged engagement, transparency, member
checking, reflexivity, and accountability to name a few (Creswell, Plano Clark, Gutmann, &
Hanson, 2003; De Witt & Ploeg, 2006; Doyle, 2007; Finlay, 2002; Morse et al., 2002;
Sandelowski, 1986). There is a consensus among scholars that the above actions are
intended to strengthen rigour, but there is no set rule on how many of the strategies should be
incorporated into one’s research to demonstrate rigour (Morse, 2015). Typically, the
researcher incorporates one or more of the above approaches and reports the findings in their
research demonstrating rigour (Creswell & Miller, 2000).
In my own research, I have used the following methodological strategies to ensure the
credibility of my findings: prolonged engagement, peer review, member checking, and
reflexivity, all of which are methods appropriate to interpretive description. Guba and
Lincoln (1989) point out that prolonged engagement and repeated interactions with study
participants will help to bring rigour to the collection of data because it fosters trust, which in
turn will lead to a richer data set (Morse, 2015). For my research, data from each participant
was collected over a period of two to four months. I had contact with each participant at
least twice and in some cases three or four times after the interview. During these
encounters, I established connections and gained trust, which provided the level of comfort
needed to allow the participants to feel free to engage in several discussions about their
experiences around the diagnosis of their children. My ongoing contact with my participants
fostered a connection that increased the rigour and the credibility of my doctoral research
findings (rich data).

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Peer Review
Peer review is a method used to inform and improve the research process by engaging
colleagues, to provide a critical assessment of the merits of the research study (Merriam,
2002). Peer review of my research occurred on a number of occasions and at various stages
and was undertaken by my academic advisor and various committee members. My initial
interview questions were scrutinized, and I had another graduate student engage in a trial
interview and provide feedback before I began the formal interview process with my
participants. Additionally, one professional clinician read versions of my data analysis and
corroborated my analysis, which offered validation. In addition to using a process of peer
review to establish the credibility of this study, I also incorporated member checking and
reflexivity to enhance credibility.
Member Checking
Member checking in qualitative research can involve any number of feedback and/or
validation mechanisms, all of which are designed to improve accuracy and credibility. A
qualitative study that attempts to describe and gain insight into a particular human experience
gains credibility when both those who have had the experience and those who have not can
recognize the interpretation and understand it (Sandelowski, 1986). The purpose of member
checking is to confirm whether the researcher’s impressions and findings are congruent with
the participant’s understanding of their experience, to determine whether there are areas of
disagreement, and to establish the nature of any discrepancies (Merriam, 2002). Participants
were invited to respond to the preliminary research findings and discuss how consistent the
findings were with their experience. Each participant was emailed a member checking letter
inviting them back to the research project for feedback. The letter also explained what

88
member checking involved and described the method that would be used. Ten of the 17
participants chose to provide feedback, and each of them confirmed their agreement with my
findings. No new insights were provided by participants during the member checking
process. (Appendix).
Reflexivity
Critical subjectivity refers to the researcher’s ability to reach a high level of
awareness (Lincoln, 1995). One way to enhance one’s awareness is to engage in a process of
reflexivity. Reflexivity is considered to be the defining feature of qualitative research, with
the object being to produce less authoritative and more self-critical texts (Finlay, 2002;
Hertz, 1997). Dowling (2007) defines the process this way: “Reflexivity refers to the
engagement by the qualitative researcher in continuous self-critique and self-appraisal and
the provision of an explanation of how his/her experiences did or did not influence the stages
of the research process” (p. 136). I used my journal to record my reflections on the research
process, including my methodological decisions and rationale for the selection process, my
thoughts about the logistics of the project, and my reflections generally about what I saw
happening, and how my values, beliefs, and interests came into play.
My journal became more reflexive and less reflective once I began my data
collection. Reflexivity differs from reflection in that reflection does not require a relational
interaction. According to Pillow (2003), reflexivity involves self-awareness and self-scrutiny
and the recognition of others in the research process. Pillow (2003) is specifically interested
in the power imbalance between the researcher and participant subjectivities and supports
this view of reflexivity, as this practice is a way of broadening our understanding of how our
self-awareness, social locus and life passions as researchers influence the entire research

89
process from initiation to completion. Similarly, qualitative analysis is an iterative and
reflexive process that begins as data are being collected rather than after data collection has
terminated (Stake, 1995). Before conducting each interview, I recorded my thoughts,
intentions, awareness, and my overall well-being. On completion of the interview, I re-read
my reflections and documented my reflexive thoughts, assumptions, challenges, and
perspectives regarding the interview. This type of integration strengthened my awareness of
my potential influence throughout the interview and provided an opportunity to examine the
participant’s meaning.
Guba and Lincoln (1989) note that it is important to make sure the participant’s
meaning was captured and understood on a deeper level. My personal and professional
history working with children and families undoubtedly influenced my perspective and
perceptions. Patton (2002) suggests that reflexivity “reminds the qualitative inquirer to be
attentive to and conscious of the cultural, political, social, linguistic and ideological origins
of one’s own perspective and voice” (p. 65). I used reflexivity to question my assumptions
and biases and to look at other challenges that surfaced. Morse et al. (2002) argue that
validity and reliability are achieved when the researcher rigorously follows a number of
verification strategies in the course of the research process:
Together, all these verification strategies incrementally and interactively contribute to
and build reliability and validity, thus ensuring rigor. Thus, the rigor of qualitative
inquiry should be beyond question, beyond challenge, and provide pragmatic
scientific evidence that must be integrated into our developing knowledge base. (p.
13)

90
I concur with Morse et al. (2002) and therefore incorporated several quality measures
throughout my research to demonstrate methodological coherence and rigour.
Summary
My research was conducted using the methodological framework of interpretive
description, as set out in the work of Sally Thorne (2008). I used semi-structured interviews
(repeat contact) and a process of recording my reflections in a journal as my method for
collecting data. Data analysis was informed by Braun and Clarke’s (2006) six-step
framework. Ethical measures were taken to ensure the protection of human participants by
way of informed consent and maintenance of confidentiality. Verification strategies were
implemented to ensure rigorous, credible, and quality research. Quality was established
through prolonged engagement, member checking, peer review, and reflexivity. The
interpretive description approach was considered the most appropriate method to explore the
parental experience of receiving a diagnosis of a child’s developmental disability. The
analysis of these experiences is described in the findings presented in Chapter 4.

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Chapter 4

Findings

Introduction
In this chapter, I set out the themes that emerged from my interviews and I have
organized the findings in terms of the research question and the aims of this study. The main
purpose of this research was to explore and describe the experience of parents who have a
child with a developmental disability and who received a diagnostic assessment by one of the
CDBC multidisciplinary teams located in northern British Columbia. I identified factors that
facilitated or impeded the way in which the parents comprehended the information that was
delivered by the healthcare professionals during the final family meeting. I also explored
how parents managed the recommendations that the CDBC team set forth in the final report
following their child’s developmental diagnosis.
I provided an overview of my data analysis method and a discussion of the way in
which I developed the overarching themes and sub-themes. Transcript excerpts from study
participants have been selectively included (identified by pseudonym) in order to capture the
nuances of individual experiences, to illustrate the themes that emerged from these
experiences, and to show the way in which their experiences led to the reported findings.
The process of drawing out individual subjective experiences, discovering commonalities
and framing them was one of the most difficult and rewarding tasks undertaken in this
research. I was honoured that the parents involved in this research had chosen to share their
personal stories with me, and I felt privileged to have had the opportunity to identify the
themes that I thought best represented their experiences. The findings presented here were
particular to my research and I make no attempt to generalize these findings or propose their
utility for other clinical settings.

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Snapshot of Data Analysis
The methodology used to frame this study was that of interpretive description. The
purpose of interpretative description is to provide an intellectual narrative that influences our
understanding of a specific experience (Thorne, Kirkham, & O’Flynn-Magee, 2004). Thorne
(2008) described interpretive description as a useful method to be used in applied healthcare
settings as it seeks to understand mutual experiences as well as individual differences
(Thorne et al., 2004). The analytic process involved the transformation of raw data into
findings coupled with the construction of an interpretive account of what the themes within
the data signified (Thorne et al., 2004). Interpretive description uses inductively derived
thematic analysis to identify patterns among and between individual cases within a
phenomenon of interest (Hunt, 2009).
The audio-recorded interviews were professionally transcribed. Once this was
completed, I checked the accuracy of these recordings by reading the transcripts (three times)
while I listened to the recordings. Following this, I attended to the text as a whole in order to
identify the patterns that I thought captured the primary significance of the text. In
subsequent readings of each transcript, I looked for specific answers to my original research
question.
I then created a second document (MS Word) for each participant that served as a
record of the key phrases (patterns) I copied from the main transcript of the individual
interviews; this allowed me to identify and group the relevant data. I used the margins of the
hard copy to make notes where I identified possible themes and subthemes. The data from
each of these documents were also copied and merged to form an additional document where
I grouped all participant interview responses according to the research question. Once the

93
overarching themes became clear, subthemes were developed to account for nuances and
variations from the theme. Overarching themes and subthemes were then clustered on the
basis of commonalities, patterns, and connections. The identification and development of the
themes and subthemes were enhanced by my continuous reading, reflexivity, and
consultation with my committee supervisors and participants, and by writing.
The Participants
The participants in this research were parents of children who had been diagnosed
with a developmental disability by one of the CDBC multidisciplinary teams across northern
British Columbia. All of the participants met the research criteria for participation.
Seventeen parents volunteered to participate in my research. Thirteen of the participants
were female, seven of the thirteen were the biological mothers of the children, and six of the
13 were adoptive mothers. Four of my participants were male; two of the four were the
biological fathers of the children, and two of the four were adoptive fathers. All of the
participants were residents of northern British Columbia at the time of this research. Twelve
of the 17 participants resided in Prince George and received their child’s diagnosis from the
CDBC team located in Prince George. The remaining five participants resided in various
locations in northern British Columbia. Two of the five participants were from Quesnel, two
resided in Burns Lake, and one lived in Vanderhoof. Each of the five families received their
child’s diagnosis from the CDBC teams situated in their own communities.
All 17 interviews were conducted during a two-month period (April–May, 2015).
Follow-up occurred between the months of May and August of 2015 in order to clarify some
of the information and for the purpose of member checking. Nine of the 17 interviews
occurred in an office setting at the request of the participants, and the remaining eight of the

94
17 interviews occurred in the participants’ homes. The participants were diverse with respect
to income, education, employment, gender, status, and race. Much of the demographic
information was garnered by speaking directly to the participants, i.e., not obtained by way of
a questionnaire. As a result, education level and employment information are not reported in
Table 1 (which summarizes participant attributes).
Table 1

Demographics of Participants in Terms of Regional Location, Gender, Ethnicity,
and Biological or Adoptive Parent

Location

Numbers

Prince George, British Columbia

12

Quesnel, British Columbia

2

Vanderhoof, British Columbia

1

Burns Lake, British Columbia

2

Gender
Females

13

Males

4

Biological Parent
Biological Mother

7

Adoptive Mothers

6

Biological Fathers

2

Adoptive Fathers

2

Racial/Ethnic Background
Latino

1

Aboriginal

1

Caucasian

15

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The research findings set out below were organized according to the research
question and the aims of the study. This next section identified and described the
overarching themes and subthemes that emerged from the analysis of the interview data.
Overall Parental Experiences of their Child’s Developmental Diagnosis
What factors played a role in facilitating or impeding the way in which parents
comprehended their child’s developmental diagnosis?
Overarching Theme 1: Clinical Encounters
Parents that received their child’s developmental diagnosis by one of the CDBC
teams in northern British Columbia were involved in a series of individual clinical
assessment interviews with each member of the multidisciplinary team. For the purpose of
this dissertation the clinical encounter was referred to as the “family meeting”—the setting in
which the parents received the final diagnostic assessment for their child. Clinical
encounters between an individual and a healthcare professional can be complex and the
individual’s experience can be characterized along a spectrum ranging from positive to
negative, given that a number of variables may influence individual perceptions with respect
to the quality and/or nature of the clinical interaction. For example, culture, social economic
status, and education are only a few of the social determinants of health that may contribute
to an individual’s appraisal of his or her clinical interaction.
For healthcare professionals, the delivery of a diagnosis can be viewed as a routine
part of their work, but for parents it was likely to be a crucial and stressful time where the
words and demeanour of the professional were scrutinized for meaning in hopes of shedding
light on their child’s situation. Each professional on the team was responsible for
contributing a clinical assessment based on his or her expertise in order to formulate an

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overall diagnosis. An imbalance of power is inherent to the clinical encounter and this may
well interfere with the individual experience of such encounters if they are not managed
respectfully. The specialized education required of healthcare professionals in order to
conduct clinical assessments can be viewed as a power imbalance. For example, on one hand
you have the educated professionals who had chosen to work in the healthcare system, and
on the other, there were families in need of a diagnostic assessment in order to better
understand and manage the developmental challenges faced by their child—a dynamic which
inadvertently placed the healthcare professionals in a position of power. There were,
however, professional practices that helped decrease the asymmetries in power and helped
restore balance in the clinical encounter. For example, open, respectful, and collaborative
communication with the family (or the recipient of the service) was one strategy for
mitigating the potential for power imbalance. If healthcare professionals failed to
incorporate such practical strategies, then the clinical encounter may in itself compromise the
desired clinical outcome.
The participants identified various factors that influenced their perception of their
clinical encounter with one of the CDBC teams. The parental experiences of the clinical
encounter (family meeting) were analyzed and the following subthemes emerged from the
overarching theme “clinical encounter”: structural considerations (attire, seating
arrangement, number of professionals in attendance, attributes of the meeting space);
professional diversity and new insights; questions about the assessment process; validation;
and expectations. In addition, there were a number of questions posed by the data—
generated by the individual experiences of the participants with respect to the family
meeting: Who should be present at the final meeting between the family and the

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multidisciplinary team? Should families receive the summary report prior to the final family
meeting? Should the families be informed that they needed to be prepared for the possibility
of bad news? These questions were woven through the subthemes set out below.
Subtheme 1: Structural Considerations
A number of structural considerations were addressed by the participants: where the
meeting was held (at home or in a clinical setting); how the clinicians dressed; whether the
child in question should be present, absent, or supervised nearby; the presence or absence of
a partner and/or supportive “other”; advance warning of the final meeting date and time so
specific arrangements can be made; how the clinicians were seated relative to the family; and
the use of visual aids to enhance the information transfer.
In Lisa’s case, the CDBC multidisciplinary team went to Lisa’s home to conduct the
family meeting and delivered her child’s diagnosis. According to Lisa, having the family
meeting at her residence was imperative because her prior clinical encounters had been
negative. Lisa explained it this way:
I feel more comfortable here, and sometimes when I get into groups where it was
focused on the school, every time I went in for a meeting there I felt like I was being
bombarded by a bunch of people. So I thought, by them coming to my home, it
would be a little easier for me to listen to them and take it all in, and take a break if I
needed. . . . So yes, they all came out here. It’s more personal that way too, right?
And I felt more comfortable that way too.
Lisa found that having the final family meeting held in her own home environment
put her at ease and gave her a sense of comfort which enabled her to fully hear both the

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content and the implications of the diagnosis. By supporting parents to have their child’s
diagnosis presented at home, the healthcare professionals ensured a safe and familiar setting
while providing parents with difficult information. A person’s home is generally associated
with trust and security, both of which were protective factors that influenced the parent’s
experience as they attempted to take in the diagnosis. Enabling this process to take place in
the home was also a way to bring balance and empowerment to the parents granting them a
greater sense of control over both their emotions and the situation with which they were
faced. When bad news needed to be conveyed, it seemed important to favour a physical
setting that would help counteract the inherent imbalance of power. Similarly, a physical
setting that facilitated the establishment of trust between all parties was more likely to ease
the process of delivering bad news and influence the degree to which the news was
understood.
Lisa also raised the question of professional attire of the healthcare professionals
when they came to her home:
Not looking so professional. Come in here looking comfortable, just a person. I
know you’re a professional. . . . I know you’re a doctor but come in like comfortable.
But coming here with a suit and stuff like that, I just, it changes the atmosphere
somehow. Come in here in jeans and a t-shirt and I feel like you’re part of a team. I
know doctors dress professionally but just for that once, I want to feel like we’re
family. You know everything about my life; you know everything about my
daughter. Now I want to feel like a family.
Partnerships in a healthcare relationship were essential for positive outcomes for the
individual and/or the family. Lisa’s perspective highlighted the need for a personal

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connection with the professionals in attendance, given her sense of exposure around having
shared profound feelings, thoughts, and experiences about her life. She found that the
professional attire, such as a suit, tended to reinforce the power hierarchy and, in her case,
hindered her sense of connection. Healthcare professionals need to be cognizant of their
clients and provide an open, comfortable, and productive space for the children and families
they serve.
Some participants observed that the physical layout of the family meeting room
lacked a sense of cohesion. For example, Tina noted that the physical arrangement of the
professionals on one side of the room prompted a sense of uneasiness, which interfered with
her ability to focus on the content of what they were saying. She found that this arrangement
suggested an “us” versus “them” dynamic, which she felt heightened her sense of
vulnerability and reinforced the paternalistic barrier between the physician behind the desk
and the patient on the other side.
The dynamics of the room. . . . I had an issue with that. Everybody was on one side
of the table and I was with my mom on the other side. That’s more of an authority
type of . . . there was a total power imbalance. (Tina)
From her perspective, the absence of a cohesive environment stifled the opportunity for what
would have been a valuable inquiry process on her part. Tina recommended that the family
meeting be held in a circular formation rather than the hierarchical seating arrangement that
she encountered. Along the same lines, another participant (Alley) emphasized the negative
effect of the size of the space on her experience, saying “don’t get squished in one little
office, have a bigger space.” The small space increased her anxiety and she felt
claustrophobic. She also noted the importance of having food present, especially in the case

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of Aboriginal families where sharing food was an important element of the culture and aided
in processing difficult information.
If you’re going to deal with Aboriginal families I think doing it over a luncheon
would be helpful because that’s our cultural way to eat and process information. I
think they should try that once, at least. Cater it or have something brought in,
something more personalized not so stuck in an office. Or offer the parent Ativan or
something, I’m not joking. That would’ve helped. (Alley)
Providing refreshments in the course of a family meeting may foster a welcoming
environment. Given that many people struggled to relax in a formal, institutional setting
(even more so in a small space), the importance of sharing food—a central feature of many
cultures—may be worth emphasizing for future family meetings. Alley indicated this
approach would promote ease when working with Aboriginal peoples.
Clinical assessments conducted by practitioners in a rural setting (as with Lisa’s case)
may have greater flexibility and more opportunity to implement innovate practice approaches
as compared to the situation in larger urban centres. For example, not only was Lisa able to
receive her child’s diagnosis at home, but the CDBC team also provided childcare—her child
was not exposed to the information conveyed, and Lisa was fully engaged in the process.
She said, “they even brought somebody to kind of watch my daughter as they were doing
everything so that was nice too.”
Unfortunately, two other parent-participants had no choice but to take their child to
the family meeting; they later regretted this decision given the implications this exposure had
for their child. In one case, the mother found that the presence of her son inhibited her ability
to ask questions because she wanted to shield him from the content. She was worried that he

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would internalize the information while he lacked the emotional maturity to fully understand
the content.
My son was present for the family meeting. He shouldn’t have been present but due
to circumstances out of our control we had to bring him. I wish he wasn’t there,
because he knows and we didn’t filter the information from him, so in retrospect, had
we been alone, he wouldn’t have heard all of it we would’ve given him the
information that we thought he needed to hear. He heard the negatives and the
positives and we are still trying to deal with the fallout of the bad that he heard. I
guess I don’t know if he’s playing up to what they say, like he knows what they said
about him, so sometimes I don’t know if he’s playing to that. They said his memory
is deficient and he knows that, so now he kind of uses that as an excuse. (Kate)
Similarly, the father (Kate’s husband) found that their son did not take the
news well, and the son was unable to hear the positive content, but focused on the
negative information. Dave shared his perspective regarding the presence of a child
at the family meeting. Dave explained:
I wouldn’t, I guess it really probably depends on the child, right. I think that’s a
parent decision probably, a recommendation from the practitioners as to whether or
not they recommend it because in our situation, our son didn’t handle the bad [news]
well and he doesn’t take into context all the good things that were said.
A detailed discussion between the parent and the healthcare professional was
warranted in cases where children were likely to be present so that the risks and benefits were
properly assessed and agreed upon. In the family situation described above, it turned out that

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the physical setting was not appropriate but, in the event, no other options were offered or
provided. In a similar situation, Cathy’s daughter played in a nearby room and heard what
went on in the family meeting.
My daughter was in a room that was very close to where we were and I found out
afterwards that she had heard part of the conversation. And I’d wished that she was
more isolated and had not heard any of the adults talking. I had to explain, before
that she did not know that she was any different than anyone else and then after she
had heard pieces from the meeting—I had to explain more of what FAS was and that
was something I was hoping I could do when she was a little older. Because she does
not have the understanding. I didn’t realize that she could hear because she was
down, I would say two rooms away. But the door was open. She doesn’t like to be
alone and she could hear what we were talking about. Bits and pieces, not all of it.
But I’d wished that she was more isolated. All my children have developmental
delays, I shield them from that until I think they’re at a stage where they can hear it
and have an understanding of it. I would’ve liked to have had a place where my
daughter could’ve not heard, but in a place where we felt she was safe too. You
know, if there would’ve been someone there to kind of take her, it would’ve been a
lot better. Put her on a computer game, just something so that she was not hearing
what was going on. (Cathy)
In this situation, Cathy was not aware that her daughter had overheard the diagnosis
until later that day. Her preference—to inform her daughter of the diagnosis at a later stage
in her development—was no longer an option. This was an important consideration for
Cathy, who anticipated that hearing the diagnosis could have an impact on her daughter’s

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confidence or, more important, that her daughter would use her developmental challenges as
an excuse when met with life’s challenges. Cathy disclosed that she witnessed this behaviour
from her older daughter who had been through the CDBC process and attended the final
family meeting. Cathy stated, “my oldest one that was adopted, she was a part of everything
because she was older, and she uses it as an excuse.”
With respect to the question of who should be present at the final family meeting, a
number of parents were thankful that they had a support person or a significant other
present— as they reviewed, reflected, and shared their perspectives on what they heard or
what they missed in the course of the family meeting. In some cases the parents were
provided professionally trained support workers known as key workers.
I was coached through a lot of it by the key worker, which is great. She did a lot of
explaining. She really could pick up on a lot of different things where I can’t as
clearly and so she would cut in sometimes and break it down a little further when she
felt that it was needed for me. I think not having her there would’ve been probably a
little more nerve-wracking but having her there was great. (Frank)
Cathy explained that her key worker played an important role in
understanding her daughter’s situation. Cathy explained:
In the family meeting, the key worker asked most of the questions. She asked me
before, “What do you want to get out of this, what do you think?” And she had a list,
and when I get in there, I couldn’t remember hardly anything and she went through
all of it. Made sure every single question was answered. So it was a huge positive
that way.

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Carol was very appreciative to have the extra family support during her family
meeting—she was a former child in care and had a learning disability. Carol reported:
Make sure your parent understands. You know, because she’s not going to have
support that I have. She might, don’t get me wrong, but there’s a lot of people out
there that don’t, right? I was a kid in care, I have nobody. That’s life. You know
what I mean? I have my son’s grandma. Thank God for that and the key worker.
In one case, a mother was not informed of the option to have a support person present
at the family meeting.
I would invite them to have a family support person, a brother or sister, an uncle, a
favourite cousin, somebody, just to be able to hear, because you can’t listen and hear
at the same time when you’re dealing with that because you’re stressed out. Just to
have someone else to write notes and just to say, “Hey.” I didn’t have that. You
know, if I had a choice, I would’ve asked my cousin who’s an educator to come in
and support me, to hear. (Alley)
Similarly, three mothers acknowledged the importance of having their husbands
present at the family meeting, indicating that their presence helped construct a mutual
understanding of their child’s diagnosis. For example, Ashley noted that having her husband
present reduced marital tension as he gained a better understanding of his stepson’s situation
which encouraged greater support and collaboration.
It was really good too for my husband, his stepdad, to hear the information. I think it
was eye-opening at that family meeting because . . . a lot of it, I think, my husband

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viewed my parenting like I was coddling him, or doing things for him, or you know,
let it be, he needs to have these consequences and he needs to learn and he needs to
do this. And I felt like I was always having to defend the way I was doing things with
my son . . . so having him sit in that meeting and hear, you know, all the adaptations .
. . he is more supportive. (Ashley)
Arlene, on the other hand, regretted that her husband was not present, as she yearned
for a mutual understanding between them while raising their daughter. In her case, the
family meeting was scheduled at the last minute, leaving her with little or no time to make
arrangements; her daughter had been on the waitlist for several years and Arlene did not want
to risk a further delay with a request for another date.
I had wanted my husband to be involved in it. I actually even thought of bringing my
sister in but due to the short notice, it was just me. So I wished there had been more
people involved. I really wanted my husband to be there because I felt that he really
expected too much from our daughter. I thought this would be more [the case] of an
external person saying, because of her parental exposure to alcohol she has
limitations and you have to realize that. Often coming from someone else it’s taken
with more validity than coming from me.
Another participant, Tina, emphasized that families should be warned prior to the
family meeting that hearing their child’s developmental diagnosis may have an emotional
impact on the parent. As a result, Tina proposed that families can “plan accordingly” (for
example, to take time away from work). Tina explained, “they never fathomed to say to me

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‘you might want to take part of the day off to process this. I was unable to return to work
[and] I shouldn’t have been driving my car.”
This parent indicated that the receipt of the news had taken an emotional toll on her
ability to function and she could not recall her drive home and she would had made other
driving arrangements if she was informed when the family meeting was scheduled.
One parent questioned whether all of the professionals on the team needed to make
individual presentations during the final family meeting. He was confused by all the
information that was provided by each different professional on the team and expressed a
strong preference for having a single person review a summary.
I would say I would take that exact same team and have even one person finalize
everything, rather than everybody kind of giving their bits and two cents about the
whole process. Maybe have one person to be the facilitator to say, you know what,
one person sums it all up. Having one person sum it all up, so that it’s all directed at
one person rather than having a lot of people in front of you and not knowing who to
ask what and that kind of stuff. I wouldn’t say it was overwhelming, but there could
probably be an easier way to create that process. Make it easier for the parents to
understand and have one person to go through. (Fred)
Fred felt his experience was compromised because of his learning style (needs)—he
manages and processes information much better coming from one person rather than hearing
all the information from a number of professionals—as such the family meeting. He
proposed that he would have perceived a better understanding of the content if it was
delivered by a single facilitator. In keeping with the topic of learning styles, another
participant shared her view on an additional method of deliverance that can maximize

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understanding. Tina emphasized that a visual aid would have enhanced her ability to process
the clinical content. Tina explained, “another piece is the visual—they should have like a
PowerPoint for the parents, for all you know the parent also has a disability. Some people
are more visual.”
It was not uncommon to hear people refer to themselves as visual learners—they
retained information better when a visual stimulus accompanied the verbal presentation. It
appeared that the use of visual media could help reduce misunderstandings as the parents,
family members, or other professionals would then be more able to challenge or correct
information as it emerged during the family meeting.
With respect to how the meetings were structured, specifically how and to what
extent they were organized ahead of time, the question arose of whether the families would
benefit from receiving the summary report prior to the family meeting. Alley found that she
benefited from having read the summary in advance; that such preparation helped her to
understand her child’s diagnosis when the time came and, more important, it gave her the
opportunity to formulate questions ahead of time.
I just had the summary prior to the family meeting, but just to be able to ask questions
for clarification, it was a lot easier to understand. Explaining in layman’s terms the
technological pieces that were done . . . it was very helpful bringing it down to words
that I could understand. (Alley)
Similarly, Lisa received the summary prior to the family meeting and also found it
helpful when it came to forming an understanding of her child’s diagnosis.

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I received a short summary prior to the meeting. So that’s where all the questions
were coming from. I’m going, “Well how did you come up with this? And how did
you come with that?” So when they came here I was able to sit and go, “Okay well
you’re saying this, how did you get to that conclusion?” So they were able to explain
exactly in great detail.
In contrast, Arlene would have preferred to have the summary prior to the family
meeting but it was not provided.
They gave me the paperwork. We went over it briefly in the meeting, and they asked
if I had any questions. It would’ve been nice if I’d been supplied the information
ahead of time. Then I would’ve had time to look over it and be prepared with
questions.
Several participants in the study indicated that receiving the summary report at least
one week prior to the family meeting would have provided parents with the time to process
the diagnostic findings, prepare appropriate questions, and seek clarification if required.
Subtheme 2: Professional Diversity and New Insights
Fifteen of the 17 participants in this study acknowledged the value of learning about
their child’s diagnosis by way of a multidisciplinary team. The combined expertise was seen
as instrumental to being able to gain new insights about their child’s circumstances.
Participants found that being able to hear a number of professional opinions—each addressed
a different aspect of their child’s level of functioning according to their area of expertise—
gave them a more complete understanding of their child’s overall abilities. In Mary’s case,
hearing difficult news delivered with hope and sincerity made the content easier for her to

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process; Cathy found the diversity of views helped her build not only a more complete
understanding but another point of view entirely. Similarly, Dave found the diverse
assessments helpful, particularly where the professionals engaged with each other in the
course of the meeting in order to answer questions regarding the collective assessment;
Arlene found the assessment more encouraging than she anticipated, and Tina found that
hearing about different aspects of her son’s disability was preferable to a “breezy” summary
statement from an individual doctor. These parents all acknowledged that the information
provided in this way allowed them to make informed decisions about their children’s health,
future, education, and support resources. Cathy explained:
The most useful [thing] about the family meeting was hearing everybody’s different
opinions, different sides, different diagnosis, and coming to an agreement. I think
that was the best part, was just hearing others. And some of them have a very
different opinion of what was going on than the other one did. It’s kind of neat to
hear them discuss the different parts and try to piece it all together . . . into one
diagnosis. You know, you have this one view when you go in of where you think
your child is and then you listen to everybody speak and you just have a more
complete understanding of that person. Before, you just have your one side, your
thoughts, and your focus. When you get the opinions from everybody else, you can
then look it up and see a totally different side. It ended on a very positive note with
lots of hope, of she has this potential, not this negative. It makes a whole different
feeling about it. Like my daughter’s verbal and language skills, I thought she was
much higher than what they assessed her at. It was just interesting to see where they
thought she was and where I thought she was. Because I thought in that part she was

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much higher because she comes off very, she’s very well-spoken, but her
understanding was not there. She’s far more fragile than I thought and I have to um .
. . think a lot more about what I say to her, and how I talk to her. It impacted my
husband too because before little jokes or something he would say, now you realize
you shouldn’t because she’s not taking the humour out of it. Cause she does not fully
understand language and I really did not understand that before this. It impacts the
whole family. You have to put a lot more thought into it.
Dave echoed a similar experience:
It was good to have everyone in the same room, all the practitioners and both parents
in the same room. They gave their findings and they were able to actually exchange
if they wanted to add something to what someone else had said. They would
elaborate based on that, and then if we had a question we would ask and there was the
ability for everyone to kind of have a conversation. Which I thought was helpful.
Without that meeting, then it would’ve been just us reading the document so we
wouldn’t have had a chance to hear them describe what their findings were, and what
their interactions with our son were, and some anecdotal comments they had around
their interviews with him, that was helpful in understanding our son’s situation. I
was quite impressed with the help; the people that were around the table definitely
had a very good understanding of who our son was and a lot of care shown towards
him, great, great people. (Dave)
Arlene was pleasantly surprised in her daughter’s results of her diagnostic
assessment. Arlene explained:

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I liked hearing what their perspective or what their feelings about my daughter were
and what they noticed. I was surprised that she tested as high as she did. I thought
that the findings would be a bit more affirming her limitations. As a parent, you don’t
see your children quite the same as external people. You see them with parental eyes
and it’s different. It was good to hear that she will probably continue on into
adulthood with fairly limited difficulties. I went from as a parent of a young child
thinking she’s absolutely the most amazing thing in the whole world and then as she
was in school I started to realize maybe the prenatal exposure to alcohol affected her
more than I had realized. Then in the final meeting, sort of realizing okay well yes it
did affect her but not in a really, destructive way. She should be able to function on
the whole, for the most part pretty well.
Tina expressed her experience this way:
The most useful [thing] was that various professionals that came to the meeting,
bringing different perspectives and different pieces of assessment about my son. I felt
that every individual talked about certain pieces instead of having one doctor breeze
through everything. Each person spoke of their findings and their experience. It was
a huge multidisciplinary meeting of people and expertise that came to the table. So
that was nice to have various opinions.
Two parents claimed that they benefitted from the multidisciplinary approach that
arrived at their child’s diagnosis. Both children had received prior diagnoses from individual
practitioners which resulted in an inaccurate assessment for each of the two children. Tina’s
son had been diagnosed with ADHD and no further assistance or assessment had been

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provided despite her son’s ongoing struggles. It was not until a comprehensive evaluation
was undertaken by the CDBC multidisciplinary team that her son’s cognitive disability was
diagnosed and proper interventions were recommended. As such, Tina described her
experience:
I went to the meeting, with the only understanding from a previous assessment that
my son had ADHD and that’s not considered a disability. So when we went to the
final meeting and I was actually told no, your son is cognitively delayed. It opened
up a huge world of understanding and the other pieces of why he was not
communicating and not understanding.
Tina was grateful that a comprehensive assessment had been recommended by her
family doctor and the school counsellor because she felt that, since her child had already
been diagnosed, there was no need for another assessment. In retrospect, she understood that
the original diagnosis was not comprehensive, as it was conducted by a single practitioner
rather than by a multidisciplinary team—two distinct diagnostic processes each resulted in
different outcomes for the child.
Given the intricacies involved with diagnosing childhood developmental issues it was
imperative to have a multidisciplinary approach when providing a comprehensive clinical
assessment. It is not uncommon for parents of children with developmental delays to start
their inquiry with their primary physician. It was crucial that the primary physician referred
parents to a pediatrician for a thorough assessment in cases where developmental issues were
suspected. If required, a referral for a multidisciplinary assessment would be recommended.
In Mary’s case, a pediatrician who practised in another part of the province diagnosed
her son with Fetal Alcohol Syndrome (FAS) early in his development, when he was just four

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years old. At the time of this study her son was 15 years of age and his assessment by the
CDBC team did not result in a diagnosis of Fetal Alcohol Spectrum Disorder (FASD). This
new diagnosis (indicating an absence of this disorder) was not only surprising to the adoptive
mother but also to the youth who was present during the family meeting. Mary recalled her
reaction this way:
I was shocked because I thought the FASD would come out right away. I was really
shocked that he didn’t get that diagnosis. He doesn’t meet the criteria for FASD. My
son was happy. He was very happy that he didn’t have that title. He’s always known,
we’ve always talked to him about being FAS, and what will happen in school and
stuff like that, so he was actually quite pleased, and his comment to me after was “see
Mom, I knew I didn’t have it.”
In this case, the youth was Aboriginal and was removed from his biological parent
subsequent to his birth. There appears to be a widespread belief that Canadian Aboriginal
children were more likely to have a diagnosis of FASD (Public Safety Canada, 2010). Bray
and Anderson (1988) proposed that this belief may have been influenced by earlier research
which was methodologically flawed and which may have prompted over-diagnosis of
Aboriginal children having FASD. Was Mary’s son subject to the practitioner’s
predisposition to diagnose a child in these circumstances or was he simply misdiagnosed?
Either way, this error in diagnosis had several implications not only for the youth but for his
birth mother. His adoptive mother indicated that she had a close relationship with his
biological mother—who denied that she had consumed alcohol during her pregnancy until
the day of her death. Unfortunately, the biological mother passed away prior to hearing that
her son did not, after all, have FASD. The misdiagnosed label had followed this child to

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school at an early age, and he was required to follow a curriculum designed for his perceived
needs. Mary acknowledged that the positive reassessment, which removed the stigma of
being an FASD child, motivated her son in so many ways.
The way he deals with things has changed for him. I think it’s given him a little bit
more confidence in doing his work at school and stuff like that. I think he wasn’t
really applying himself at school before and it’s almost like now that he doesn’t have
this diagnosis of FAS, he’s working better at school. Like I know he was capable of
doing it but now he’s doing it. (Mary)
While most of the participants were appreciative of the number of professional
assessments that resulted from the multidisciplinary team, one of the participants, Rita, was
concerned that her daughter was assessed by only two healthcare professionals. She pointed
to the absence of input from a speech therapist, which left her to conclude that her daughter’s
assessment was incomplete.
It left me thankful that it wasn’t Fetal Alcohol Syndrome but it left a big wide-open
door to what’s to come because she didn’t get a diagnosis. It all falls under the
speech part, her different area of speech, so now that’s rearing its head, this isn’t over.
The concern was “Oh she doesn’t have Fetal Alcohol Syndrome,” which we pretty
much suspected but something was there. It was the psychologist. I was also told
that wasn’t a complete assessment because it was just the pediatrician and that doctor;
there should’ve been a speech language therapist. And this is the area that affects all
the different things. But I thought it was the complete assessment and I’ve just

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recently been told that wasn’t a complete assessment because there was no speech
language therapist there. (Rita)
In Rita’s case, the school had already expressed concern about her daughter’s
language development, but in the absence of a diagnostic recommendation the school was
unable to provide appropriate intervention strategies. Rita emphasized that the only reason
she wanted a comprehensive evaluation in the first place was to receive a diagnosis which
would allow her daughter access to appropriate educational support in the school setting.
Unfortunately, Rita was now required to go through the lengthy referral process to request an
assessment from a speech pathologist in order to address what she believed to be her
daughter’s core issue. In the meantime, she was worried that her daughter would continue to
fall behind socially and academically while waiting for a further assessment.
In all, the majority of the participants learned something new about their child on
hearing the assessments provided by the CDBC practitioners. Kate knew her child
experienced a few challenges but not to the degree that his assessment indicated.
As a parent, my perspective is just very different from somebody outside, right, so I
didn’t really have any idea of the things that they discovered about him in their
analysis, like things that he was gifted at and things he was deficient at. It was
actually quite surprising, but accurate. My learning was actually huge. I was
surprised because I didn’t think that his issues went as deep as they apparently do.
(Kate)
It was not uncommon for parents to overlook aspects of their child’s behaviour,
nuances that specialists were alert to, especially when parents have no point of comparison.

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Kate recognized differences between her son (undergoing assessment), and her older
daughter—anomalies that she attributed to gender differences.
Subtheme 3: Questions Regarding the Assessment Process
Parents described their journey to obtain a definitive diagnosis throughout the
interview process. They talked about when they first recognized questionable behaviours in
their child, how they sought a referral from their general practitioner, how they proceeded
through the process of the clinical assessments, and how they finally met with the CDBC
team to learn the details of their child’s diagnosis in the course of the family meeting. In
some cases, during the various clinical assessment interviews with each practitioner,
participants were concerned that their view of their child did not match the assessment of the
practitioner. Other parents questioned the period of time that the healthcare professional
spent with their child in order to formulate an accurate assessment. Essentially, some parents
simply wanted more information about how the medical professionals arrived at their
individual clinical assessments.
Eight of the 17 participants questioned particular aspects of the assessment process
which led to their child’s diagnosis, and wondered how decisions were made. Arlene
recalled an early conversation with one of the practitioners on the team during the assessment
process where it appeared that her daughter might be diagnosed with an anxiety disorder.
This ran counter to Arlene’s own experience with her daughter.
I think when you’re dealing with doctors, the problem with doctors is they see your
child for a very short period of time but they seem to feel that they have this, I don’t
know [but] I’ve done this much schooling so I know so much, but as a parent, you’re
with your children for these long periods of time, you see them in every kind of

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situation. One of the first things that happened when we met the doctor, she said my
daughter had an anxiety disorder. And I kind of went, “mmm, I don’t think [so]” and
she said “Well, it’s obvious,” and I’m thinking, “I don’t think so.” My daughter had
the same teacher for four years. I went to her and I said do you think my daughter is
an anxious child? And she went, “What? Nope.” The only thing that really helped
was when we were in the family meeting. The psychologist said she’s not an anxious
child. He said, “I saw no, absolutely no signs of a child that’s anxious.” But I found
that really frustrating because who would know a child better than a parent? (Arlene)
Arlene was frustrated that her own knowledge of her child had not been taken into
consideration in the clinical assessment phase. As a result, the mother sought professional
validation outside of the clinical assessment team which clearly validated the mother’s
observation of her daughter. Given the absence of her contribution, she questioned the
physician’s quality of the assessment. Arlene’s experience indicated that the parental
perspective must be viewed as a credible source of information during the assessment
process unless noted otherwise. Considering the amount of time parents spend with their
child from the moment they were born, and the many settings in which they observed their
child, parental information must form at least a part of the overall picture. It turned out in the
final assessment there were no basis for a diagnosis of an anxiety disorder, but Arlene
nonetheless felt sidelined in the process. Healthcare professionals that failed to take the
perspectives of the parents into consideration influenced the parental experience which led to
parental dissatisfaction.

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Sally had a similar experience where one of the professionals on the CDBC team
during the individual clinical assessment phase indicated that her son had Oppositional
Defiant Disorder. Sally explained:
One area of confusion that sort of stood out was how one of the professionals came
up with the assessment. We filled out forms about our son but the professional didn’t
really meet with him alone, she talked with us and then she did more of a physical
with him, and I thought she would’ve spent a few hours with him to come up with
some of her assessments of him. At one point she had said that he had Oppositional
Defiant Disorder. I would’ve felt a little bit more secure about what her findings
were if she would’ve actually spent time with the child. ’Cause she wasn’t there with
him very long, like 20 minutes. It just didn’t seem long enough to me for her to really
get an understanding of him. Maybe spending more time with the child to feel like
you got a more accurate assessment and recommendations, but I don’t know, just
from a questionnaire, I think physically you need to be there with the kid.
Sally told the physician that she did not believe her son had Oppositional Defiant Disorder
(ODD) and felt that her own estimation of her son was dismissed. Sally was familiar with
ODD, having watched her friend’s son in close proximity over a number of years. When she
discussed this diagnosis at some length with her friend, they believed that there were no
indicative characteristics of ODD present in the behaviour of Sally’s son. Sally
acknowledged that, while she was not a doctor, it seemed that a longer assessment time with
her child was required for a more accurate diagnosis—on the basis of a questionnaire and in
the absence of Sally’s contribution—she felt confused. Fortunately, this physician’s
assessment was combined with the other clinical assessments as part of the multidisciplinary

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diagnosis, which meant that, when a final diagnosis was formulated, Sally’s son’s symptoms
did not meet the criteria for a diagnosis of ODD.
Sally was not the only parent that questioned the duration of the assessment time
spent with their children. In fact, several parents thought that the assessment time spent with
their child was insufficient. Carol explained:
I don’t agree, maybe I’m wrong, but I feel like these people came into my son’s life,
they met him for a day, some of them met him for a couple hours, they go away and
they do whatever they do and they come back and they say your son is “boom” but
how the hell do you know? You took two hours with my kid. You took a day with
my kid. Who the hell do you think you are to come to me to tell me for the rest of my
son’s life, that he’s going to have ADHD? He’s never going to outgrow it and this is
that and here’s medication and go around labeling children like they’re a paint jar.
But you know what, I’m glad you took this time with my son and I’m glad these are
the things that you said that he has. Now I’m watching. I’m watching now and I
have him all life, so I’m watching.
Individual children vary in temperament, cognitive development, and behaviour.
These differences play a role in how a child responds to a healthcare professional and to new
situations. Effective communication was a fundamental skill when building rapport between
a healthcare professional and a child, especially when ensuring that assessments were
appropriate and accurate—children required a unique relationship with the professional so
the interaction can elicit quality and accurate information. Study participants indicated that
children must feel comfortable and safe before they were likely to reveal themselves; they
emphasized that the clinical encounters were more likely to result in accurate assessments if

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children were engaged with this in mind. Children who felt safe and comfortable in the
clinical encounters disclosed their true thoughts. Fred not only felt that the time devoted to
his child’s assessment was limited and superficial, but combined with the lack of familiarity
the clinician had with his son, Fred felt his son’s diagnosis was suspect.
Our regular pediatrician, he has seen him multiple times and he’s quite friendly and
cordial with our son. He speaks with him on his level and I think my son’s a little
more himself, open and relaxed with the doctor, and my son shows his true colours
’cause he’s seen him several times, so I was expecting a longer appointment or
several to get a better sense of my child.
When engaging a child during a clinical assessment the study participants confirmed
that sessions would be more productive—if more time was actually spent with their child—
ensure the healthcare professionals were welcoming and the child was addressed in a
language that he or she understood. For example, Arlene found that her daughter shut down
when she met with one particular physician.
You put a child in certain situations and they will be anxious, and my daughter
always struggled a little bit with authority figures. She doesn’t know how to respond
to them and her doctor was a very sort of intimidating figure. So my daughter shut
down when we would meet. (Arlene)
Matthew queried the relevance of certain information that was provided during the
family meeting.

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Some of the pediatrician assessment was accurate but there was some of the
pediatrician assessment that was very off-base, not around developmental stuff but
she had diagnosed him with some allergies and stuff, potentially life-threatening
allergies, which actually didn’t turn out to exist, so some of the pediatrician stuff I
found not really an applicable or relevant or even appropriate. (Matthew)
Similarly, Sally questioned the relevance of having her son’s diagnosis compared to
ADHD in dogs; she was given a resource (book) which was intended to help her gain a better
understanding of her son’s situation. Sally explained her surprise:
I found it odd that I was given a dog book. So it was a book about dogs with ADHD,
and so I think it was just a way of understanding if these traits fit your child . . . each
page showed a dog and then asked, “Does your dog do this?” So it was about dogs
with ADHD. I thought that was a little strange because I don’t have a dog. I have a
child. It was kind of a cute book about [dogs], and you kind of go, “Awe,” but then
I’m like, “Okay we’re supposed to be here talking about my son.”
Given that parents of a child with a developmental disability worry about the social
stigma that their children may encounter, Sally felt that professionals needed to be sensitive
to this and that resource material does not exacerbate the vulnerability of both parent and
child.
Subtheme 4: Validation
Throughout the interviews, parents acknowledged that the professional clinical
information shared during the family meeting provided them with a sense of relief and that it
validated the issues associated with parenting a child with developmental challenges. As a

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parent, the moment that you were informed that your child had a developmental disability
was the moment that your life changes in crucial and irrevocable ways. Some parents felt a
sense of validation because the diagnosis had been a long time coming. At the same time, a
few parents expressed mixed feelings about their child’s developmental diagnosis—
wondering if they were somehow responsible for their children’s developmental challenges.
Eight out of seventeen participants addressed the issue of professional validation. One
participant did not receive the validation she hoped for, while the other seven felt relieved at
having their own assessments validated by professionals. In particular, one parent was very
relieved as her son’s behaviour prompted an investigation by child welfare which in turn
made her question her parenting: Alley explained her experience:
Relieved. I struggled for eight years, and to actually have medical professionals tell
me that we can’t believe you’ve gotten this far with him, I was relieved and
acknowledgement that I wasn’t going crazy. It was just really great, to know that,
you know, at least someone understood the struggles and the challenges.
Alley was in the process of a child welfare investigation because of her son’s
behaviour in the school environment which called her parenting practice into question. She
felt increasingly responsible for her son’s behaviour as scrutiny from outside agencies came
to bear on her situation. Alley was very relieved that her son received a formal clinical
diagnosis because it legitimized her son’s condition, affirmed that her experience was real,
and helped to deflect outside attention when it came to questioning her competence as a
parent. At this point, she was also relieved that she was given several constructive strategies
to help her son and she revelled in the fact that she forwarded her son’s report to the
organizations that caused her such unnecessary grief.

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It was not uncommon for parents to question whether their actions during pregnancy
or following delivery contributed to their child’s developmental disability. Kate recollected:
As a parent maybe a sense of failure because now he needs to be on meds which isn’t
rational thinking but it’s kind of what immediately comes to mind, so personally it
was kind of like, “Hmm.” Well I internalized it, it wasn’t about my son, but it was . .
. what could I have done? Did I have enough folic acid when I was pregnant? I look
at him and I think there’s absolutely nothing wrong with this kid but he seems to be
having trouble, and to be able to get that outside perspective was really great. It was
a relief.
Similarly, Tina experienced thoughts that were indicative of self-blame, but felt
disappointed that she did not receive validation.
You’re given this news and you’re sitting across all these professionals and as soon as
they see that pain in your eyes, they all look down at their paper and then there's no
more discussion or validation for your feelings. They follow through with do you
have any questions? Of course you have zillions of questions like was it me? Is this
biological? Is this genetic? Was this because I didn’t do this or I didn’t eat my
vitamins? What did I do wrong? Didn’t I look after my body right? Did his father
not look after himself? And then you question after his birth, was it because of this,
was it because of that? And you started there and then I ended with how didn’t know,
I am his mother. So you go through a whole process. (Tina)
Given that parents were flooded with many different feelings, it was important for
practitioners to assess the extent to which a parent had internalized the reasons for a child’s

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behaviour, and the extent to which this impacted their understanding of their child’s
developmental diagnosis. If the professional deliverance of the information was managed
appropriately and parents were satisfied it can have a profound and sustained effect on
parents’ attitudes, not only toward healthcare professionals but most importantly, to their
child. The parent participants in this study acknowledged that, following the formal clinical
diagnosis, they restored their sense of confidence around their parenting practices. On the
whole, they felt better equipped to parent in light of their new understanding of their child.
For example, Frank felt that he had a clearer sense of direction.
You’re happy to actually understand what is going on. You don’t feel like you’re
playing a guessing game. You know what direction to focus on. When things are not
going well, you can always look at them and say, “Okay, this is this and that.” I think
you feel relieved in that sense that, “Okay, now I know where my direction has to
be.” It’s a relief because now you know what it is and you know the expectations, you
know what needs to be done in order to help him along. (Frank)
Ashley explained her experience:
We’d been living with this for 11 years. We knew something was wrong but we
didn’t know what. I’ve known something was up from birth and then as he grew,
there was red flags his entire life and so to finally leave with that information was
like, “Oh thank God!” I felt relieved as there was acknowledgement and that I wasn’t
just an overbearing mom. Feeling validated I think is a big piece.
Ashley was particularly relieved that she received this form of validation. She
disclosed to one of the physicians during the assessment interview phase that she had

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consumed some alcohol during the early stages of her pregnancy, before she was aware that
she was expecting. She regretted making this disclosure because she wondered whether her
son’s diagnosis would have been different had she not said anything during the assessment
interview. Ashley had been a foster parent and had cared for several children with FASD.
Her experience told her that her son’s issues were unlike the children who had been
diagnosed with FASD. In the final analysis, while he was diagnosed as being on the
spectrum, there was no conclusive evidence for FASD. In the end, Ashley was relieved that
her son received a complete diagnosis that made sense to her.
The majority of the parents felt that the professionals on the CDBC teams understood
their point of view and had some sense of the distress involved in having a child with
developmental issues. Validation was one way to receive constructive feedback. Parent
participants in this study found the validation process beneficial, which allowed them to
comprehend their child’s diagnosis and thereby to move forward.
Subtheme 5: Expectations
Families sought developmental assessments for their child for a host of reasons. The
participants in my study identified several reasons for pursuing a comprehensive assessment.
A significant motivation was the hope that a definitive diagnosis of a developmental disorder
would result in services, support, and possibly financial assistance for both the child and
family. This was the outcome for some families, while others were disappointed. On the
whole, parents who had waited for some time in hopes of a definitive assessment felt relieved
when the assessment was finalized.
Eleven out of the 17 participants indicated that they hoped for some form of social or
financial support in order to increase the chance for a better outcome for their child. In this

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respect, the experiences of the participants varied. For example, Cathy secured support at
school for her daughter and her family, and saw this as one of the distinct advantages of her
child’s diagnosis.
The major advantage is now that it’s on paper and you can take that to the school,
they can’t just brush you under the rug. Before it was written on paper, she got no
support at school because there was nothing there. And putting it down on paper
opens up a whole new world. And she now has an aide, she now has help that she
never had before, and the school no longer overwhelms her with endless homework
knowing that she can’t complete it. They have to agree with it, they can’t get out of
it. (Cathy)
Cathy had waited a long time for her daughter’s diagnosis and could not access
appropriate services at school prior to the diagnosis. Her daughter’s problems were not
apparent to the school staff, and as a result, they tended to be dismissive of the parental
concerns, which were not viewed to be legitimate. A number of parents had a similar
experience where they took the final report to the school in order to get appropriate support
for their child. Frank explained:
A big piece is now you can get help. As soon as you have that little piece of paper
and you walk into somewhere or you are dealing with the school, government, you
don’t even have to say anything, you just lay it down. That piece of paper says it all,
right? Now you have a piece of paper that gets you the help you need.
Carol discussed her son’s support this way:

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He gets more support at school. The diagnosis has given us a little of funding or
something, the school, I don’t know about the school money nonsense thing, but this
has helped my son. So it’s been good that way too, right. But I mean, I don’t
understand it so I’m like ya sure you got some extra stuff to help my son, awesome
As a rule, in order for certain services and funding to be made available to children
and families in need, a formal assessment with a certain diagnosis is required. The formal
assessment process was a time-consuming process for many parents, which was inopportune
given that early intervention services promotes positive outcomes for a child with
developmental delays. The premise that a child required a formal diagnosis in order to
access appropriate services appeared problematic. As a result, some parents were put in a
position of wanting their child to be formally “labelled” even at that cost of the stigma
associated with a developmental disability. For example, Kate reported that she was “kind of
upset about the ADHD determination but it got him support at school.” Although Ellen’s
child did not receive the diagnosis needed to initiate the support at school she had hoped for,
she had much the same response as Kate. Ellen explained:
Our son didn’t get an FASD diagnosis he got an ARND or something. He didn’t
qualify for supports at school so we were, it might be kind of weird to say, but we
were hoping for a diagnosis to get the support at school. It didn’t happen but I
understand why it didn’t happen. It wasn’t enough to guarantee him support in
school.
In Matthew’s case (Ellen’s spouse), given his professional standing in the community
and his ability to work with the system, the CDBC team was able to have his son recognized

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as having a learning disability and thereby receive better support at school. Matthew
explained:
In looking at his psychological profile, they were able to give a learning disability
designation and a medical one. Even though they knew based on the constraints
around the program that he has this impact they gave a name to it, so they’re able to
work around it a little bit . . . so he can get support.
Arlene had a similar experience where the CDBC team provided additional
documentation that supported her daughter’s learning disability so that she could mobilize
support at school.
They assured me that we could have something to take to her school and say, “Look,
can you just give her a bit of leeway?” They weren’t able to give the full diagnosis of
FAS but they were able to work other things so that she could still get support from
the school. (Arlene)
Fred’s primary reason for wanting a formal diagnosis for his son was to secure
additional support at school. He was disappointed by the diagnosis, or lack of it, and also felt
misled by those who had encouraged him to proceed with a formal assessment. From his
perspective, he was set up for the disappointment that followed the family meeting.
Not to be negative but I didn’t find we had the outcome we thought we’d have. We
found the meeting kind of disappointing because we were assuming our son would be
getting much more support from everything we’d been told. We walked away
feeling, “Wow, we went through all this for what?” Disappointed and frustrated

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because we learned at that point there wasn’t going to be the help that we wanted
available to our son. Basically, I think it’s probably a bit of a setup in what we were
told prior to what can happen and to what did happen are two different things. Other
professionals in the industry were telling us, that when you go through this process
you’ll get the assistance that you’ll get the help that you want and need. (Fred)
The absence of a formal diagnosis should not stop a child from having access to
resources that would better help them achieve their full potential. Unfortunately, agencies
that once provided services have been impacted by local and provincial budget cuts. Fred
was convinced that his son required one-on-one support at school in order to achieve his full
potential.
Overarching Theme 2: The Manner of the Delivery of the Diagnosis
What factors played a role in facilitating or impeding the way in which parents
comprehended their child’s developmental diagnosis?
Parents reported a range of responses to the way in which the formal diagnosis was
delivered in the course of the family meeting. Parents characterized certain features of the
delivery that aided their understanding, and other features that challenged their ability to
understand what they heard. It was important to note that the emotional impact of hearing a
child’s developmental diagnosis triggered a wide range of experiences which influenced the
way in which the parents’ understood the diagnosis. They also talked about how their
parenting changed in response to the diagnosis.
Four subthemes were identified in relation to the overarching theme “The Manner of
the Delivery.” These included the following subthemes: impact (emotional impact and
impact on parenting practices), the level of professionalism displayed during the delivery of

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the diagnosis, the language used to convey the diagnosis, and the quantity of information
provided at the final family meeting.
Subtheme 1: Impact (Emotional Impact)
Eleven of the 17 participants talked about the emotional impact of hearing their
child’s diagnosis. They reported having a complex range of emotional reactions, feeling
overwhelmed and challenged by the onset of the emotional cascade, and it felt like their
emotions prevented them from processing the information on first hearing the diagnosis. Six
of the 11 parents acknowledged that their emotional response presented them with an
obstacle to their processing of their child’s diagnosis. Three of the parents found that they
were very emotional when they thought about the implications of the diagnosis in relation to
their child’s future. Additionally, two parents felt that their emotional needs were not taken
into consideration. Parents’ experiences with emotional impact were grouped into three
categories: emotions related to hearing the diagnosis, emotions regarding their child’s future,
and emotions associated with the parent’s own well-being.
On first hearing the diagnosis, Alley felt overwhelmed by the disparity between her
desires for her son and the severity of his developmental disability—a response that was
compounded by her own emotions.
It’s still difficult [crying], sorry, this is hard. It’s still pretty hard for me to talk about
it because it’s hard to think your son is broken, right. You struggle for years and you
put your whole life on hold to be able to support your child to be normal or to be seen
as normal by his peers and other people. (Alley)

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At the time of her interview, Alley was in the early stages of coping with her son’s
diagnosis, and it was a challenge for her to speak about her son’s situation without crying.
Tina compared her response to the same feeling as hearing unexpected news of a loved one’s
sudden death; the diagnosis took this parent by complete surprise. The sudden shock blocked
her ability to absorb what she heard. Tina remembered her experience this way:
It was similar to being told someone had died, you know. I was not prepared for bad
news. The first thing was the shock of the news, as a parent not knowing your son
has a disability, right, your first initial piece is how did I not notice? All of a sudden I
started crying and somebody slides me a box of tissue, your whole body shuts down,
your mouth gets really dry, your heart is pounding.
Ellen was also visibly upset during the interview as she reflected on the final meeting.
She was shocked that the family meeting had such an emotional impact as she was already
well informed about her son’s history prior to his adoption. Hearing the various professional
narratives of her son’s early and traumatic experiences triggered an unexpected flow of
emotions—perhaps in part due to the attachment that formed between Ellen and her son since
the adoption.
Yeah, it was a hard meeting. The pediatrician was talking about all of his losses and
trauma that our son has been through, so to hear it all in a list, it was very emotional
to hear. It was hard to hear so I kind of hurt for him. That probably affected how I
processed the whole rest of the meeting. It was information that I knew about his
background but to hear it in that way, just like “bang, bang, bang,” it was hard to
hear. (Ellen)

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Ashley recalled that she felt emotionally depleted, saying that “a piece [of my
reaction] was definitely overwhelming. I was exhausted emotionally, absolutely drained.
Sitting through that is like, it’s just exhausting and it is so much to take in.” Similarly, Carol
felt “helpless. That’s my child and they’re telling me he’s being diagnosed with all these
things. I didn’t win the lottery. I felt pretty helpless.”
Three parents talked about their concern for their child’s future. Fear for their child’s
future was a common emotional response that parents recounted in the course of the
interviews. The parents’ noted that their subjective emotional experience during the family
meeting limited their ability to fully comprehend the information—as the nature of the
content disrupted their ability to be in the present as their thoughts fast forwarded to what this
meant for their child’s future. Kate explained:
Then you start thinking about how it’s going to impact his future and so some fears
and worries. You think of what that means for him, right? It means he’s going to
have to take medication every day and then you worry about whether he’s going, how
that’s going to affect him, you know. I’m also worried, when kids are put into a
category, I’m a little concerned when it comes to school and whether that limits them,
so that’s concerning.
Tina recollected her experience in this way:
I’m still numb, all of a sudden my perfect little baby boy is not perfect. You see here
I am in my bubble thinking about what’s going on, what’s going to happen? What
does this mean? It’s like a big humming feeling in my brain. Now graduation is not
the same, weddings are not the same, riding the bike is not the same, um, dating’s not

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the same. I don’t know what’s going to happen to this little boy. Here I’m thinking
do I have him until I die? Who will look after him?
Both Tina and Lisa felt that there was a lack of concern or support regarding the
parent’s well-being while the team conveyed the diagnosis at the family meeting. Lisa
recalled:
I felt like somebody should’ve stayed behind and ask how does this make you feel?
They are doing my daughter’s part but not the parent. It was a challenge to tell them
exactly how it all made me feel, about me. I didn’t want to make it feel it was all
about me because it wasn’t, right, but we’ve done the process that we needed to do to
get the help for my daughter, now the challenge is help the parents get through it too,
you know. They could’ve said, you know, we’re leaving and here you go, here’s
some information to help you move on and help yourself. I wanted to go beyond the
diagnosis and I felt like I wasn’t able to tell them that because I felt they’ve done their
job. They do what they need to do and then they’re out of here. So I went into a deep
depression.
Tina explained her situation:
Acknowledge the impact, this is a lot of information today, would you like to have
some time so we can discuss this further? [For example:] “Would you like to meet
later today? Would you like me to come to your house? I can bring some resources
and we can continue this? How do you feel right now?”

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Lisa recommended the addition of an extra professional to the team—a
counsellor that solely addresses the emotional needs of the parent. Lisa explained:
Add that one extra person on the team for the support for the family. So after they
leave, they stay. It’s a lot of information to “get.” Like I’m sitting here and they’re
all telling me what’s wrong with my daughter. It would’ve been nice if they
would’ve, took this information, and say we’re going to tell you this, tell me how you
feel about that? And then stop and talk about it. And we kind of did, but I felt like I
had to make them quick questions. I felt like I had to be rushed. Where a counsellor
would’ve been nice, where he or she could’ve stepped in and said how does that make
you feel?
Impact on Parenting Practices
A number of parents talked about changes in their parenting practices after they better
understood their child’s diagnosis; they found that they had gained a greater understanding of
the ways in which their child was different—that was pivotal in shifting their parenting
strategies. It was not uncommon for a child with a developmental disability to require
specific parenting strategies. A parenting approach that worked for a child with typical
developmental patterns may not be the right match for a child with a developmental
disability.
Following the clinical assessments and the diagnosis, parents asserted that they were
better equipped to read their child’s cues—which in turn fostered appropriate parenting
techniques and reduced their level of frustration. Ten of the 17 parents identified a shift in
the way they parented their child following the family meeting. Being reminded that their
child had a certain skill set gave the parents a realistic grounding with respect to the capacity

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of their child. For example, Sally gained a better perspective on her son’s needs and abilities,
and both Sally and Mary examined and revised their expectations of their children. Sally
reported:
I think we had been pushing our son a bit too hard academically beyond his level, and
making him do all this extra work and they said it’s starting to be too much and that
was one thing I never even thought about, was his anxiety. That was good because
that diagnosis has made us a little bit more aware of his capacity and a little more
compassionate. We don’t push him. I think one of our biggest things is getting a
proper diagnosis so that we can maybe be taught properly how to deal with his type of
personality. So knowing these things, it had a big impact because I think we’re trying
to parent a little bit softer with him, because I think we were heightening his anxiety
without even realizing it.
Dave described how he modified his interactions with his son once he understood that
his son had difficulty processing information.
It’s helpful to know that he has processing issues, so we know that he is very quick on
certain things and certain knowledge sinks in, as he’s a smart kid. It’s hard when you
know that he knows so much and his level is here, that’s the level you tend to speak
to, but now that we understand there’s some processing difficulties, then we make
sure that we deliver it to him, not in a condescending or young manner, but we give
him time to process it and if he’s kind of distracted, maybe he’s still thinking about it,
maybe he’s kind of repeating it to himself in his head, we give him a moment to do

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that. It’s helpful to us so that we know he needs a bit of time to think about directions
or questions. (Dave)
In the process of coming to terms with the diagnosis, parents acquired a greater sense
of knowledge associated with the range of developmental milestones experienced by typical
childhood development, and the behaviours and physical skills that were particular to their
child’s unique developmental journey. The following reflections made by the parents
highlighted the way in which parents came to better understand their child’s behaviour
patterns and changed their parenting approach accordingly.
Just understanding that diagnosis means you need to follow certain directions with
certain behaviours and how to prevent certain behaviours. I find now I’ll look at my
son and I’ll be like, “Hmm, this is this, right?” It changes your whole parenting skills
by just understanding what he has control over. (Frank)
Arlene explained:
I need to constantly tell myself that the prenatal exposure to alcohol did do damage,
that’s a fact. I have to constantly tell myself that although there are things that may
drive me crazy, she doesn’t always have complete control of that.
Kate described her experience in this manner:
It really helped to understand where he was coming from and what his issues had
been and it offered us a little more understanding of how he was behaving, and how
he works as an individual. I am more patient with him.

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Alley explained that her child’s developmental diagnosis created a space for more
comfort: “My son and I do more talking and cuddling and less frustration on my part, as a
parent.” Similarly, Carol said, “He’s still the same kid. I just have more tools to learn how
to deal with his behaviours. I’ve put my pride away for a little bit and started looking at
stuff.” Ashley talked about how the diagnosis changed her husband’s perspective (her son’s
step-father): “He heard [my son’s] diagnosis in the family meeting [and] he changed his
approach—he is gentler.”
Subtheme 2: Professionalism
On the whole, participants indicated that the delivery of their child’s developmental
diagnosis was communicated in a positive and professional manner. According to the
participants, the practitioners on the team provided positive feedback, showed respect,
displayed empathy, commitment, openness, and honesty. The majority of the parents talked
about the kind words that the team members used to characterize their child. They enjoyed
hearing positive comments and consequently, felt that the professionals recognized their
positive parenting practices.
There were no judgments. They started the meeting saying first and foremost we
need to say he is so polite and he was a dream to work with, and I was just like,
“Okay, they said you’ve worked hard, as a parent, you’ve been proactive.” They
gave positive feedback and it was appreciated, it was comforting. (Ashley)
Arlene explained it in this manner:
You honestly got the feeling that they cared, that this wasn’t just a job and that they
cared. So that was a real positive. I thought they did a fairly good job of explaining

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it, for the most part. The positive responses of everybody and the great things they
said. They were very impressed with how she presented herself. Maybe I did a lot of
things right. So in that way I felt very happy because as a parent you constantly
doubt yourself. I felt maybe like yay, I did more right than I thought.
Mary shared her experience in this way:
To me it was a very open and honest conversation. I didn’t feel like I was being
singled out in the room. You know how sometimes you feel like, they are doctors,
they’re this and you feel a little bit insecure. I didn’t feel that in that meeting. I was
relaxed. It was professional.
Dave explained his experience in this manner:
I was quite impressed with their professionalism. The people that were around the
table definitely had a very good understanding of who our son was and a lot of care
shown towards him, great, great people.
Frank recollected:
Finding a positive and putting it out there to make you feel comfortable before
delivering the negatives that do impact you emotionally, right. They were quite good
with that.
The level of professionalism that was displayed towards the families during the
family meeting was well received. The parents deemed the recognition of their child’s
strengths as an important reminder, as these strengths had a tendency to be overshadowed by

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some of the challenges encountered during the activities of daily living. All of the
participants felt positive about the team as a whole, which enhanced their ability to hear and
understand their child’s developmental diagnosis.
Subtheme 3: Professional Language
Effective communication has many core aspects, and it is a necessary skill required of
healthcare professionals. First and foremost, effective communication requires the use of
language that was most appropriate to the situation to ensure that the intended message was
understood by all the individuals involved in the clinical interaction. The use of professional
jargon resulted in miscommunication and thereby impeded understanding.
The participants shared their experiences about the way in which the members of the
multidisciplinary team used language to communicate the results of the clinical assessment
during the family meeting. It appeared that a lack of communication was not the issue.
Instead, some participants reported that it was the choice of words the professionals used in
the process of conveying the developmental diagnosis. Eight of the 17 participants felt that
the use of specialized language, particularly medical jargon, was not ideal, especially in cases
where the parents felt they did not have sufficient education to make sense of the information
at hand. For example, Carol, who herself had a learning disability, had difficulty
understanding what she heard as “doctor jibber-jabber,” which raised the question of
adjusting the delivery of information according to the particular capacity of the listener.
Use English, or try. That’s just normality to them but it is way over our heads. It’s
not that they’re doing wrong, they’re not doing anything wrong, they’re just being
themselves and they just know medical terminology. They talk medical we don’t
know that, we never went to school. I don’t understand a lot of doctor jibber-jabber

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nonsense. What if I did not have my son’s grandma with me? I would not even
know what happened over there. I would know nothing. I’m lucky I have that
because I don’t know what the person does when they don’t have that. (Carol)
Matthew, a well-educated professional who worked in a related field in the
community, confirmed that the importance of using “every day terms” when conveying
information.
If I was someone who wasn’t working in this area and didn’t have an education, I
would not understand. The best thing that helps around understanding the
assessments is really putting it in, like, every day terms. A lot of times it just goes
over the family’s heads. I would say at the family meetings, bringing it down to the
level of what does this mean for this child in everyday life, and what does it look like
for this child in everyday life. I think that’s really what’s going to be important for
the parents to walk away with. They don’t care in the end what his visual processing
score was and stuff like that. (Matthew)
Both Arlene and Sally recommended that the team should use examples or elaborate
further on the meaning of the content being conveyed:
I think sometimes when you’re trying to understand something, examples help you
grasp it because when you’re being told something it’s not making sense because
some of the words used, and it really helps to use examples during the meeting.
(Arlene)

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A bit more thorough descriptions of stuff, not assuming that someone knows what
that is, like I thought I did. (Sally)
It also turned out that Sally and her husband understood their son’s diagnosis quite
differently from each other; they compared their understanding at length after the family
meeting in order to decipher the facts.
At the same time, when Mary found that she was unable to fully understand the
implications of the diagnosis, the team explained the information in terms she understood.
I found they were really good at explaining anything I didn’t understand or anything
my son didn’t understand. We were able to say, “Hang on, what you mean by this?”
I think that’s really important that they were able to come to my level of
understanding, like some of the terms they used I was just, like, “What are you
talking about?” And they were very good at sitting down and explaining everything.
I didn’t feel rushed. I didn’t feel stupid with any question that I had. (Mary)
Subtheme 4: Quantity of Information
The fourth subtheme that emerged from my consideration of the theme “The Manner
of the Delivery” was that of the volume of information provided in the course of the family
meeting. While the parents acknowledged that receiving information about their child’s
diagnosis was of utmost importance, the amount of information was seen to be excessive
given other factors that were in play during the final meeting.
Six of the 17 participants talked about the quantity of information that was conveyed
in a relatively short period of time (an hour), which made it difficult to absorb given the
emotionally charged context. For example, Kate explained:

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I probably should’ve used a tape recorder but I’m pretty sure both my husband and I
were taking notes at the time it’s just a lot, a lot at once, you know. You start
thinking and then you miss the next piece or whatever and actually they encourage
you to bring other people in, like maybe somebody who isn’t so emotionally
involved. Everybody hears different things, hearing the same words but different
interpretations, so a tape recorder would be a really good idea because you could go
back and ask what did they really say and in what context do they say it?
Ashley shared her experience this way:
So much information and you get one hour to talk with the team. It’s not even one
hour to talk with them, that one hour is listening to the findings. Kind of a snapshot
of what each one came up with, so I have a lot of questions and I inquire a lot. I
probably could have had four hours with them and that would have been great. So
having the hour with them was tough.
Ellen explained her story:
Instead of just hit you with all the information and ask do you have questions? [I’m
thinking that] I don’t know. I probably do [have questions], but [they say] “Okay,
well, check back in with us, we have an hour, thank you, the next person is coming.”
For optimal understanding—preferred clinical practice was to have healthcare
professionals relay medical information by way of clear and concise language and to limit the
amount of information provided to the client. Healthcare professionals should be alert to this
practice because often parents felt uncomfortable admitting that they experienced difficulty

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comprehending everything that was being said. In other words, the responsibility of whether
or not the knowledge transmission in a clinical encounter was understood should not rest
with the parent. For example, Sally noticed that one team member referred to funding details
with respect to school support for her son saying, “they reviewed certain scale information
related to school funding. That was very confusing and I guess that part confused the hell out
of me.” As a result of not wanting to ask further questions Sally and her husband walked
away from the family meeting with two different interpretations of what supports their son
would receive based on the funding information conveyed during the family meeting. Fred
described:
My wife was a little confused about what an Independent Education Plan was,
because she thought we were getting someone helping us. I was like no, no we’re
not. We’re not getting that. We’re getting an education plan. She’s like what’s a
plan? I’m like well, they work with people at the school and try to help our son with
the facilities they have available to them. No one person at any point in time is going
to be present with our son. Yes, they’ll be getting funding but not for our son but for
the school. Basically we were told that because of our son’s assessment, he will be
getting funding for the school. They will be putting somebody in place, not
necessarily for our son. Nobody will be dedicated to our son per se. If someone else
needs it in a different classroom, they’ll be with that child, but the school will be
getting funding for it, because of his assessment from what we understood.
In this situation, both parents were grateful that they attended the family
meeting, as they defaulted to each other to clarify what they understood from the
meeting.

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Overarching Theme 3: Where Do We Go From Here?
Which factors influenced parent follow-through with the clinical recommendations
developed by the team?
Receiving a child’s developmental diagnosis was an important turning point for a
number of participants in what they described as a “long journey.” For some parents it was
important to have a name for what they observed in their child’s behaviour. Many
participants reported mixed feelings at this juncture of their journey— how to proceed into
the future with their child was on their mind? Following the final meeting, the participants
reported feeling ambivalent about the next stage. Much of the uncertainty articulated by the
participants had to do with concerns about addressing the recommendations, and how they
would decipher some of the content in the final report. The diverse views of the parents were
grouped into three subthemes related to the theme of “Where do we go from here?” which
were identified as post disclosure, recommendations, and the final report.
Subtheme 1: Post Disclosure
A number of the participants were concerned by the lack of opportunity to meet with
the healthcare professionals following the disclosure of the final diagnosis. Essentially,
participants saw the necessity for the opportunity to ask follow-up questions in order to fill
the gaps in their understanding of both the diagnosis and the recommendations. They
described their experience of being left to digest the outcome of the diagnosis in the absence
of professional contact post-disclosure from the multidisciplinary team. Six out of the 17
participants specifically addressed this issue. For example, Ellen had no further contact with
the CDBC team subsequent to the family meeting and felt that her understanding of the
diagnosis and recommendations diminished over time.

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The opportunity for follow-up down the road would be really good. After the
meeting we came away, we had the recommendation, we had this understanding and
then that definitely had decreased over time. If someone would have checked in with
us three months later, to see if we are doing anything, if we read the report, if we had
any questions, that probably would have been good. (Ellen)
Ashley was excited that she received a call from the clinical coordinator informing
her about this research opportunity but she questioned the timing of the call. Ashley
recollected:
I think having someone reach out, even just getting this call from CDBC, when she
called, and I was, like, that’s wonderful to feel like somebody was checking in.
That’s what she said, “I’m just calling to check in and follow up.” I said, “Wow, I’m
so happy you called because, some questions have come up,” and so she was able to
say, “Yes, there is this key worker who can kind of go through this with you and fill
in those blanks.” Get somebody to call and check in sooner, right? So the family
meeting was in November. It’s now March, so they could’ve even got her to call
earlier.
Lisa shared that she was very distraught when she did not receive a call in a timely
fashion following the family meeting, and Kate remembered feeling overwhelmed as there
was no opportunity to ask further questions after the family meeting.
I felt I can do this, I know what I’m doing, I’ve done all the research that I possibly
can and it was about a week or so later when somebody finally called and said how
are you doing? And I went, “Are you kidding me? How am I doing?” Like, I hate

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you, you know. And that’s what I said to her. And I’m sorry I feel that way and I
don’t want to hate anybody but I hate you for not asking me how I felt. You just gave
me all this information [crying], there you go, deal with it. That’s how I felt. So that
was the hard part. (Lisa)
Kate shared her thoughts:
It is a little overwhelming to have it all and then to have no opportunity for questions
after. Another meeting maybe after you get the full report because it was nice for
them to go over the summary with us.
It was clear that many parents required time to digest what they heard, but as time
passed additional questions surfaced. Sally said that she “wasn’t very prepared as to having
questions ready for them during the meeting and it wasn’t until I got home, you start thinking
about things and saying, “Hmm, I wish I would have asked that.” This was a common
reaction, where parents felt the need for another opportunity to ask questions about the
diagnostic findings. Allowing time for parents to develop their comprehension post
disclosure and return at a later date to discuss outstanding questions was crucial for parents to
move forward. This outcome can be achieved by providing an opportunity for the parents to
ask for clarification either by way of the team or a key worker.
One parent suggested a strategy that the multidisciplinary team could implement
immediately, in the context of the family meeting, if follow-up was not made available due to
external factors. Rita suggested that “there should be breaks between every piece of
information allowing the parent to ask everybody questions rather than at the end asking, ‘Do
you have any questions?” The parents that expressed a need for further contact were the

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same parents who felt a strong emotional impact when they were given their child’s
diagnosis at the final family meeting. These parents indicated that a follow-up meeting after
the family meeting could again convey the information that was lost in the wake of their
emotional response.
Subtheme 2: The Final Evaluation Report
As part of the child’s diagnostic assessment and evaluation process, the
multidisciplinary team completed a comprehensive final report that was provided to the
families. Many of the families were given a summary report at the conclusion of the meeting
and were told they would receive the final copy in the mail. Recommendations were
included in the report to maximize the child’s full potential for development, which included
information on support services and other various interventions. Six out of the 17 parents
talked about the quality of the report—whether and to what extent they thought that the
report was understandable, accurate, and informative.
While four of these six parents felt satisfied with the report they were given, two had
qualms. Rita was concerned about demographic inaccuracies in the information recorded for
her family, errors which in turn made her wonder about the credibility of the report. Rita
explained, “the report that was received from the team has errors regarding my daughter’s
ethnicity and the gender of her sibling.” Arlene felt that aspects of the report were
inappropriate and unnecessary and was more about personal opinion—an emphasis on her
daughter’s weight, which Arlene thought could have impacted her daughter in a negative
manner—if she had chosen to read the report (she did not).
I felt a lot of anger when I left the meeting because of one thing that happened, which
really, really bothered me. When you get the summary, it’s got the main highlights at

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the very top. The third one was “overweight” and that really bothered me because my
daughter is 5’1.” She’s extremely active and at the most she’s carried ten pounds
extra. I really thought that, in this day and age, with our teenage girls, [with] many of
them having eating disorders, I thought it was absolutely ridiculous to have that [as]
one of the first things you read. I mean, it’s different if you’ve got a child that’s
morbidly obese because, yes, that is a health risk, but for a child that’s carrying
maybe 10 pounds too much? She was very involved in this process, and I gave her
every opportunity to be involved in everything. I offered to show her the report.
Now luckily she didn’t ask for it because I didn’t want her seeing that. (Arlene)
The parent discussed the hypocritical nature of the physician as the parent indicated
that this individual’s body mass index appeared to be outside of the standard
recommendation. The parent further elaborated that the physician’s comment would have
carried more influence if this dichotomy was not present. Some of the parents found the final
report too complex and required assistance when it came to interpreting much of the
information.
When you get the report, some of the information, it’s really not in layman’s terms.
So you find you’re Googling, or trying to kind of figure stuff out . . . when you’re
reading the information. (Ellen)
Kate explained it in this way:
The summary and the final report . . . it was well done. The final reports were pretty
concise and they used big language but with the Internet we kind of tried to piece
things together trying to relate the information to how he behaves. Maybe some

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interpretation of the report might be beneficial, like, I don’t know what “cognitive
behaviour” is.
Tina acknowledged that she enjoyed reading the report—she referred to the document
in terms of a diary that included a thorough historical picture which gave her an opportunity
to reflect on her journey as a mother.
The report was very clear, concise. Every person involved did a historical piece. So
from the beginning it flowed completely to the day of the assessment. It was just
super thorough. It provided a lot of professionals’ perspectives and their knowledge,
and it was very clear and concise and very positive. (Rita)
Cathy appreciated the clarity of the report and noted that it included additional
information that was not covered at the meeting.
When I got the report too, it even had more information in it than what was at the
meeting, and a lot of resources. The key worker assisted me in reviewing the report.
(Cathy)
The assistance of key workers played a significant role in helping some parents
understand the final report. The observations of the parent participants with respect to the
content documented in the final report highlighted the importance of a professional standard
when it comes to documentation in a clinical report—accurate records reflect integrity.
When healthcare professional’s document in a client’s record one must avoid personal
opinions—if a comment was required be certain to frame your comment based on facts.
Needless to say, this can affect the client in a negative manner, as observed in this study.

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Good quality reports were necessary for the competent delivery of clinical services and
interventions.
Subtheme 3: Recommendations
The experiences of the parent participants varied when it came to dealing with the
recommendations that arose out of the diagnostic assessment for their child. In some cases,
parents had received their child’s diagnosis within two weeks of the time of their interview
for this study, while others had received their child’s diagnosis within the last six to 12
months. Given the differences in the amount of time that had passed, each parent was at a
different stage when it came to interpreting and implementing the recommendations for their
child.
During the course of their interviews, the parents talked about the significance of the
recommendations that had been developed for their child, as well as the ways in which the
recommendations could be incorporated in the home setting. Fourteen of the 17 participants
specifically addressed the question of recommendations; of these, eight were relatively
satisfied and six wanted further direction. The following examples best captured the
divergent views, where some participants felt well-advised and satisfied, and others felt as
though they needed more guidance and information. For example, Alley felt the
recommendations were helpful and well-outlined and that being able to bring them forward
into the school setting made a “significant difference” to her son’s behaviour.
It was very helpful, and it was outlined such as “step one, do this.” They gave me
online resources, and I’m pretty computer savvy and . . . able to self-help and be an
advocate for yourself to seek out further steps and stuff that was super helpful.
There’s a challenge with being out of the main centres in the province, right, to be

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able to access more support, but we’ve implemented almost all when it comes to the
school system. Since the implementation of the recommendations there has been
significant difference with my son, like night and day. (Alley)
Cathy indicated that she successfully implemented all of the recommendations
because she had the assistance of a key worker.
All of the recommendations were implemented. That had a lot to do, too, with the
key worker because she went to the school with me afterwards and met with
everybody and explained what needed to happen and what she needed. (Cathy)
On the other hand, Betty wanted more information with respect to her son’s diagnosis
but appreciated that her education enabled her to do her own research, while she realized that
this may not be the case for everyone.
More information on my child’s diagnosis. I wasn’t given any of that. I’ve done my
own research, and I’ve read quite a few books prior to having the suspicion. But let’s
just say if I wasn’t as high functioning, I would think that might be a difficult thing if
you were given a diagnosis without any sort of resource material. That’s the first
thing you say, “Okay, what do I do, where do I go, what’s next? How do I treat this
person now that I know this?” More tangible, physical resources available then and
there to say here’s some information. Nobody said this child should take this
medication or that medication, or you should be going to find your family doctor to
see him about medication. The school, in so many words said, your child needs
medication. So I took the initiative, made the family doctor appointment and said,
after much research on my part, you know, “I’m willing to go forward on this, here’s

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his diagnosis, it’s ADHD, what do you recommend?” There was no medication
recommendation at all. (Betty)
Betty appeared to be quite open to the possibility of administering medication to her
child, despite the fact that this intervention was not included in the recommendations for her
child. Interestingly, Betty was one of only two parents in this study where medication was
not recommended for their child. In contrast, Carol was opposed to her son being medicated
and was upset that medication had been recommended.
They did describe medication. Did I get medication? No, I do not believe in
medication. The school told me to get medication, the doctors told me to get
medication. I told them all to go have their own babies and medicate them and leave
mine alone [laughs]. He does not need medication. I’ve got a fear of my own self
about medication. I’ve had a hard life, right. So it’s tough. I’ll play it out another
year, maybe two and we’ll go from there. He’s not a guinea pig, he’s a boy. (Carol)
A number of parents admitted that they were reluctant to give their child medication
but nonetheless proceeded with the recommendation. By the end of the family meeting,
Sally was open to the idea of medication, as one of the doctors articulated the use of
medication in such a knowledgeable manner that Sally was reassured:
I did like the doctor’s knowledge of the medication to make me feel a little bit more
comfortable about going forward with that. Because I think if she wouldn’t have said
those things to me, I probably would’ve just been, like, “You’re just pushing pills.”
Because that’s how I felt, but she had a different interpretation of it and it made me
feel a lot more comfortable.

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Both Arlene and Matthew changed their views about the administration of medication
to children—once they observed the improvement in the emotional and behavioural health of
their children their beliefs shifted. Arlene explained the positive effect that it had on her
daughter.
I’ve never been a big fan of medication and I worried about it but when we put her on
medication. I have to be honest that I saw a huge difference. It really, really, really
helped her. It helped her to stay on task, it’s helped her to stay focused and that in
return helped her feel way better about herself. So knowing that the medication may
be a part of her life for a while, not necessarily forever, but, you know, as long as she
feels she needs it, it’s a positive thing and has been just a huge good thing in her life.
Matthew explained:
With the assessment also came the recommendation for medication to help him keep
focused and stuff and anxiety because he’s got a lot of anxiety. It helped.
Fred was prepared to give his son medication, but indicated that he wanted additional
strategies for dealing with his son’s learning disabilities, that medication alone was
insufficient.
But in my mind, it’s not clear . . . what would help our son besides medication, like
how do we treat his learning disabilities? So, in my opinion, it got us part way. We
were trying to line up someone to help us with our son and we don’t have any help for
his learning disabilities.

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Rita felt that the recommendations prompted more questions than answers when her
daughter did not receive the definitive diagnosis Rita had hoped for.
She didn’t have any of the effects of the alcohol, but it wasn’t over. She has speech
issues. I was left with probably more questions than answers. They were
knowledgeable answers that they gave, you know, based on what they did, but there
was no diagnosis. Just, you know, “Okay, continue to watch her,” and [I’m] like,
“Okay, please tell me what I’m supposed to be watching.” I don’t want to interpret
everything, like you’ve got to pick it all apart. Being clearer to the parent, this is
what you should do, or here are the next steps. (Rita)
Many children do not fit neatly into diagnostic categories, which can be difficult for
professionals looking for ways to help children and even more difficult for parents who are
desperate for assistance and for answers. Families with children who have behavioural issues
can have a particularly difficult time finding help—in the way of appropriate services. For
example, Lisa’s daughter had severe behavioural issues and missed many school days due to
suspensions. She felt that the report fell short when it came to making practical and helpful
recommendations, that it essentially told her what she already knew: that her child needed
external support services.
There weren’t really any recommendations. It was just that one sentence stating that
mother needs extensive support services and that was it. I ended up having to go to
my counsellor saying, “What do I do? Like, where do I go?” They’re saying I need
extensive support services. I know I do. In order to help my child’s behaviours I
need some support, but there was no follow-up on that or “do you have any questions

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about what we can do for you,” any services and stuff like that. They just basically
said you need that full report. Medication was not prescribed for her ADHD. I am
dead set against medication so perhaps that is why they didn’t prescribe it.
Furthermore, Lisa had an interesting experience where she felt that the CDBC team
breached confidentiality as the final report was sent to the school. Lisa described an incident
where her family history was unprofessionally and inappropriately shared with personnel at
her child’s school. Lisa explained:
The school and everybody else but me had a copy of the full report. After I talked to
the school and said I don’t even have the full report, she comes back and she says
“Oh, here’s your copy.” I was told it was going to be mailed to me. There’s
information in there that I would’ve blacked out for the school to read it. Now they
know things that I didn’t want them to know. Even though I signed that piece of
paper that says these people are allowed to see it, I made it a point, I want that report
first. The summary, I was okay with everybody having that, because it was just
basically a summary. The full report tells them things about my life that I don’t want
them to know. It’s none of their business, I want some privacy in my life, you know.
Even my husband got quite upset about that.
Clearly, the parents had varied experiences when it came to considering the
recommendations they were given. A number of parents felt that medication provided an
effective strategy, but others found the recommendation to administer medication raised
concerns and questions. Given the controversy that surrounds this topic, all risks, benefits,

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and alternative methods associated with the medication should be fully explained to the
parents so an informed decision can be made.
The themes and sub-themes that arose from my interviews are summarized in Table
2.
Table 2

Themes and Sub-themes Arising from the Interviews
Themes

Clinical Encounter

Sub-Themes


Structural considerations



Professional diversity and new insights



Questions regarding the assessment



Validation



Expectations

Manner of the Delivery of



Impact

the Diagnosis



Professionalism



Professional language (medical jargon)



Quantity of information



Post-disclosure



Final Report



Recommendations

Where do we go from here?

Summary
I would like to emphasize how open and candid parents were as they shared their
experiences with me. Their words were borne from their experiences and they were happy to
share their knowledge in hopes that it would help other parents in a similar situation, and that
their information would lead to the continuous improvement of the northern clinical CDBC
teams that serve children and families.

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The findings described here shed light on the factors that played a role in helping
parents understand their child’s developmental diagnosis. These findings also identified
other elements in the process that parents found impeded their understanding. In addition,
the parental experiences identified factors that played a role in their ability to respond to and
implement the recommendations that emerged from the diagnosis and were set forth in the
final report. The array of responses of the parent participants to the interview questions
yielded three overarching themes and twelve subthemes: Clinical Encounters (structural
considerations, professional diversity and new insights, expectations, questions regarding the
assessment process, validation, and expectations). The Manner of the Delivery of the
Diagnosis (impact— emotional and impact on parenting practices, professionalism,
professional language, and quantity of information). Where do we go from here? (post
disclosure, the final evaluation report, and recommendations). The themes and subthemes
served to outline and group the parental experiences in the process of receiving their child’s
developmental diagnosis by way of a multidisciplinary team of professional specialists.
Chapter 5 examines my pathway through to the results, the implications for the process of
delivering a child’s diagnosis to the parent(s), and recommendations for future research.

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Chapter 5

Discussion

The purpose of this study is to describe and explore the experience of parents who
have received a diagnostic assessment and recommendations by way of the CDBC clinical
multidisciplinary teams located throughout northern British Columbia. This study is
particularly concerned with the factors that facilitate or impede parents’ understanding of
their child’s developmental diagnosis at the final family meeting—the final stage of the
diagnostic process. Significant findings are discussed in relation to the relevant body of
literature, with an emphasis on how the results from this study either confirm or contribute to
clinical practice knowledge. The findings have a unique relevance that pertains to the
clinical practice of the CDBC multidisciplinary teams in northern British Columbia.
This chapter is structured in a manner that highlights protective factors that were identified as
effective in facilitating parental understanding of their child’s developmental diagnosis and
aspects of the delivery that impeded their understanding, as per the findings highlighted in
Chapter 4. Specifically, the three overarching themes—clinical encounters, the manner of
the delivery, and where we go from here—are discussed. In my study, the term “protective
factor” is used to demonstrate an action that was conveyed by the clinical team that
strengthened parental understanding, whereas a “risk factor” reflects a limitation that
compromised parental understanding. A discussion on how the parents managed the
recommendations that the CDBC clinical teams set forth in the final report is also included.
Finally, the limitations of my study and the need for future research are considered.

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Clinical Encounters
The first overarching theme, “Clinical Encounters,” encompass five subthemes that
the participants talk about in a way that either supported or obstructed their ability to
understand their child’s developmental diagnosis. The clinical encounter is a key component
in the delivery of healthcare services, and understanding what factors positively influence
that exchange is essential to providing the highest quality care to children with
developmental disabilities and their families. In most healthcare organizations, clinical
healthcare encounters are generally held in either the physician’s office or a clinical
environment located in a larger organization. As a result of this structure, one of the
problems healthcare clinicians encounter is ways to implement innovative practice in the
delivery of clinical services—as creative, innovative practice can be restricted by the
confines of a bureaucratic system. However, it is evident in my study that one particular
CDBC team was able to shift the location of the final family meeting from the traditional
organizational setting to a more relaxed environment, which engaged the parent much
differently and changed her overall experience in a positive manner. All of the participants
with the exception of one parent received their child’s diagnosis in a clinical setting
(organization). Research studies cited in the medical literature underscore the importance of
building a therapeutic environment when bad news is being delivered—which includes a safe
and private space and an atmosphere that feels warm and welcoming (Buckman, 2010;
Rabow & McPhee, 1999). This clinical practice was confirmed as a protective factor in my
study, which is consistent with the medical literature that identifies the advantages of a
comfortable, safe environment that strengthens the process and aids in the parent’s ability to

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hear difficult news that is being delivered by way of a team of clinicians (Fallowfield &
Jenkins, 2004).
There appears to be support from Northern Health (organization) for clinicians on the
CDBC clinical teams to implement creative practices to ensure quality services are being
provided to the child and the family, honouring the needs and preferences of the family. One
of the many objectives outlined in Northern Health’s implementation strategy—to provide
outstanding health services to northerners—directs healthcare professionals to establish a
culture of patient and family-centred care (Northern Health c, n.d.). Northern Health claims
that in order to deliver effective healthcare quality services, clinical practice needs to honour
the family’s preference, a requirement that is stated in Northern Health’s 2015/16–2017/18
service plan (Northern Health c, n.d.). This approach aligns with the plethora of research that
recognizes the positive health outcomes for children and families when healthcare
professionals adhere to the framework of patient and family-centred care (Greene, Tuzzio, &
Cherkin, 2012; Sevin, Moore, Shepherd, Jacobs, & Hupke, 2009). My study finding suggests
that one of the CDBC clinical teams is implementing strategies that honour patient and
family-centred care.
In contrast, a few parents identified additional structural considerations in the clinical
encounter that impeded their understanding of their child’s diagnosis. One factor identified
draws attention to the concept of cultural competence. This concept covers a variety of
practical strategies that can be deployed during a clinical healthcare encounter that positively
shapes the individual’s experience (Campinha-Bacote, 2011). Research studies document
that the quality of care can diminish when cultural barriers exist in the context of a healthcare
setting (Singleton & Krause, 2009). One of the participants felt that her culture (Aboriginal)

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was not taken into consideration during the family meeting, which had a negative impact on
her ability to focus on the content being delivered. My study finding reinforces the
importance of the CDBC clinical teams acknowledging and addressing cultural diversity in
order to mitigate this risk factor to quality care.
To foster and promote culturally informed practice, a clinical team within a larger
organization requires the commitment of the system, which will support and motivate
cultural clinical practice. Sevin et al. (2009) states that for true success to evolve, the
organization’s mission statement and vision must be committed to the development of
culturally competent healthcare professionals by way of providing mandatory cultural
evidence-based intervention training for all healthcare professionals who provide direct
services to diverse children and families. Northern Health has recently gone through a
systems change that has shifted the organization’s priorities, making the health outcomes for
First Nations people front and centre (Northern Health b, n.d.). The Northern First Nations
Health Partnership Committee, which is part of the new First Nations Health Governance
structure in the province of British Columbia, works in partnership with all aspects of
Northern Health. The overall purpose of this committee “is to collaborate and partner on
planning, implementation, and evaluation of culturally appropriate, safe and effective
services for First Nations residing in the North” (Northern Health b, n.d.). Fortunately, my
research findings come at a perfect time—the northern CDBC teams can incorporate ideas
into their clinical practice that actively and visibly encourage an inclusive framework—as
Northern Health identified this service gap to provide quality services to diverse populations,
in particular to First Nations people.

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In keeping with the subtheme of structural considerations, the notion of power was
conceptualized in my study. The parents’ perception of power is related to the physical
constructs observed at the family meeting—the seating arrangement coupled with the
professional attire created a feeling of division between the clinical team and the families.
This finding serves as a reminder for healthcare clinicians on the clinical teams to examine
the role non-verbal communication plays in the delivery process, which may unintentionally
highlight the power differential and act as a barrier hindering the parental experience.
Research from various professional disciplines, in particular social work, identifies effective
practice methods that clinicians can employ during a clinical encounter that strategically
dismantle power imbalances when communicating with individuals and families (Jupp,
2005). My research finding sheds light on certain physical features of non-verbal
communication that compromised the parent’s ability to focus on the clinical healthcare
message that the clinical team intended to convey.
In my study, all of the parents valued the comprehensive assessment that was
conducted by way of the multidisciplinary clinical team. The plethora of diverse
developmental knowledge shared by the clinical team provided the parents with new insights
into the mystery of their child’s unique developmental trajectory. The parents viewed the
professional diversity as a positive determinant in the process of understanding their child’s
developmental diagnosis. My findings coincide with research that was conducted in a
clinical cancer setting, where patients expressed their positive experience of receiving a
comprehensive assessment and treatment plan by a multidisciplinary assessment team (Lamb
et al., 2014).

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In keeping with the overarching theme “Clinical Encounters,” some parents
questioned the significance their knowledge held in the formulation of the assessment.
Parents in my study expressed a strong desire to have their contribution viewed as a valuable
source of information and not dismissed, as they wanted the assessment to reflect an accurate
portrayal of their child’s overall functioning. Research conducted by Crais, Roy, and Free
(2006) highlights the importance of the parent’s contribution in a multidisciplinary team
assessment. The absence of parental contribution in the assessment process has a profound
impact that goes beyond the clinical encounter. One consequence identified in the related
literature mentions the propensity for the parents to discredit the diagnosis, which may hinder
the parents’ motivation to implement the clinical team’s recommendations (Graungaard &
Skov, 2007). In my finding, parents were included in the assessment process, but the lack of
inclusion stemmed from a feeling that the information they provided was not deemed
credible. Nonetheless, my study finding emphasizes the need for clinicians on the CDBC
clinical teams to be aware of how they communicate—to ensure that the parents feel they are
an active participant in their child’s assessment and that their voice matters in the overall
assessment.
The Manner of the Delivery of the Diagnosis
The second overarching theme, “The Manner of the Delivery of the Diagnosis,”
encompasses four subthemes that the participants talk about in a way that either facilitated or
impeded their ability to understand their child’s developmental diagnosis. Professionalism
played a protective role in the way the parents understood the diagnosis. Van Mook et al.
(2009) claim there is “no universal understanding of what the term professionalism means
and it is unlikely that any one definition is applicable across all relevant contexts” (p. 89). In

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my study, professionalism was conceptualized in relation to the clinicians’ ability to
extrapolate sources of strength within the child’s abilities. This clinical insight provided a
shift in parental understanding of their child’s developmental diagnosis. All of the parents
appreciated the level of professionalism the clinicians conveyed, in particular, the special set
of skills and expertise the clinicians used to shed light on the best traits present in their
child’s repertoire. The parents were most delighted by the way the clinicians were able to
frame their child’s strong developmental attributes in the context of delivering a
developmental diagnosis. As such, this clinical technique uncovered positive opportunities
the parents may have overlooked if the delivery was not communicated in such a professional
manner. The parents felt optimistic to explore and reinforce their child’s identified strengths
to promote their child’s development. My finding is in line with the results of a study
completed by Choi, Lee, and Yoo (2011) where healthcare professionals provided positive
information to the parents in the context of delivering a developmental diagnosis and, as a
result, the parents reported that they developed an optimistic outlook towards their child’s
future.
Furthermore, my findings reflect a 100% satisfaction rate related to professionalism.
My study finding is higher in comparison to relevant research that has explored the concept
of professionalism in the process of delivering a developmental diagnosis. One large
quantitative study where parents (1047) completed an online survey related to professional
conduct revealed a satisfaction rate of 71.1% (Crane, Chester, Goddard, Henry, & Hill,
2015). Another similar study identified a 66% rate of satisfaction (Jones, Goddard, Hill,
Henry, & Crane, 2014). In essence, professionalism is a factor that positively affects the
outcome of the understanding of a child’s diagnosis. Professionalism amplifies parental

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understanding when clinicians include positive information about the child in the context of
delivering the diagnosis.
Additional factors associated with the manner of the delivery are related to the use of
professional language and the quantity of information that was shared during the final family
meeting. The parents in my study reported mixed experiences when it came to the use of
language and the amount of information that was delivered during the family meeting.
Several parents found that the clinicians used terms that were easily understood, and they
were encouraged to ask questions if they did not understand the information. Nine of my
participants did not encounter any communication issues associated with the language the
clinicians used during the final meeting. These participants felt that the clinical team
communicated in a clear, effective manner, which aided them in their ability to comprehend
their child’s diagnostic information.
In contrast, my study finding reveals that eight of the participants found it challenging
to decipher the content as the choice of words used by the clinicians left them feeling
confused. They reported that the use of medical jargon interfered with their ability to fully
understand their child’s diagnostic information. Given this disparity in my study finding,
there is room for clinical improvement in the way clinicians on the CDBC teams effectively
communicate to improve parental understanding. The use of medical jargon during the
family meeting ought to be examined at the clinical level—given the poor health outcomes
for the child—when the parent does not comprehend the medical information (Katz,
Jacobson, Veledar, & Kripalani, 2007). Research conducted in a healthcare environment
focusing on the effects of the physician’s ability to communicate medical information
demonstrated that the use of medical jargon has been linked to poor clinical outcomes, in part

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because the specialized language used in consultations is poorly understood and therefore
tends to result in a lack of adherence to clinical treatment recommendations (Roter, Hall, &
Aoki, 2002).
Given the knowledge about the poor health outcomes combined with my study
finding, it is important for all health practitioners to adhere to a best practices guideline in
keeping with the notion of universal precaution when communicating medical information
with families. For example, healthcare personnel approach disease control by wearing the
proper medical gear whether or not a particular individual may be contagious. Likewise,
clinicians on the clinical teams should impart diagnostic information in layman terms to all
parents regardless of their apparent level of health literacy.
The quantity of information provided to parents during the family meeting is another
subtheme of the second overarching theme “The Manner of the Delivery of the Diagnosis.”
The parents in my study had different experiences when it came to their ability to understand
the amount of information given at the time of the family meeting. Six parents in my study
reveal that the amount of information was influenced by three factors that hindered their
understanding of their child’s diagnosis. One of the factors was the amount of time the
clinicians devoted to the delivery of the diagnostic finding. Some of the parents found the
time inadequate to process all the pertinent information that was provided. In addition, some
parents found that certain material the clinicians discussed was not relevant, which led to
parental confusion. The parents indicated that in the context of the family meeting a
professional discussion ensued between the clinicians regarding what sectors of government
were responsible for funding as it pertained to accessing services. Tina reports, “all of a
sudden people started talking, talking, talking about who’s what, whose pocket of money is

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going to pay for what.” From the parent’s perspective, the nature of this dialogue had no
relevance as the parent had no control or understanding of the financial component as it
relates to the provision of health services.
The final factor parents spoke about relates to the challenge of managing their
emotions while trying to understand their child’s diagnosis. In fact, 11 out of the 17
participants talked about the emotional impact of hearing the diagnosis. In some cases,
parents claimed the emotion compromised their ability to comprehend the diagnosis. My
study finding is in line with several similar studies that showed that more than half of parent
participants experience an emotional reaction during the disclosure process, which plays a
role in hindering comprehension (Kessel, Roth, Moody, & Levy, 2013; Klein et al., 2011;
Morse, 2011).
All the parents in my study expressed the need to know and want all the relevant
information associated with their child’s developmental diagnosis. For the clinical teams to
strengthen the clinical delivery, it would be helpful if the clinical teams impart information in
a slightly different manner, taking into consideration the features identified in my study.
Increasing the time associated with the family meeting may appear to be a simple remedy,
but it is beyond the control of the clinical CDBC teams. It may be a challenge to implement
at the clinical practice level, as there are a number of systemic barriers such as time
constraints that face a healthcare organization. It is not uncommon for clinicians in clinical
practice environments to have multiple demands on their time, which requires a broader
systems change at the macro level (healthcare system). Concerning the other two barriers the
parents identified—relevance and emotion—perhaps clinical practice changes can be
implemented at the clinical level to ameliorate the negative effects on parental understanding.

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Clinicians can be cognizant of the nature of the information being discussed at the family
meeting, ensuring the content has a relevant application for the parents. In addition,
clinicians need to incorporate best evidence approaches when delivering emotionally charged
information to ensure that the message is not lost in emotion.
In keeping with the subtheme “The Manner of the Delivery of the Diagnosis,” my
research findings showed that there was a positive impact on the parents’ parenting
approaches pre- and post-delivery of the diagnostic findings. In fact, 10 of the parents
claimed that they altered their approach to parenting after forming a better understanding of
their child’s capabilities. Research on parenting a child with a developmental disability has
addressed various aspects of the parenting experience but has not explored the shift in
parenting practices before and after the delivery of the diagnostic finding (Ritzema &
Sladeczek, 2011). My research finding highlights the positive shift in parenting practices
subsequent to the family meeting. This finding is both interesting and important, given that
the child-parent relationship is profoundly important for all aspects of a child’s development.
To summarize the discussion regarding the first aim of the study, Table 3 below lists
the protective factors that facilitate and the risk factors that impede parental understanding of
their child’s developmental diagnosis during the family meeting. It is important to note that
the parents had mixed experiences when it came to the various protective and risk factors.
Table 3

Protective Factors that Facilitate and Risk Factors that Impede Parental
Understanding

Protective Factors—enhance

Risk Factors—diminish parental understanding

parental understanding



Clinical Setting (Client’s



Structural Considerations: Space, power

Residence)

imbalance (seating arrangement), and cultural

Validation

clinical practice delivery.

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

New Insights



Professionalism



Medical Jargon/the quantity of information.



Clear communication



Length of the family meeting.



Improved parenting



Emotional Impact

practices
Where Do We Go From Here?
My study findings related to the third overarching theme “Where do we go from
here?” are relevant to my second study aim—a focus on the parents’ journey regarding the
implementation of the clinical recommendations outlined in the final diagnostic report. The
parents describe their experience in relation to their child’s clinical recommendations by way
of three subthemes: post-disclosure, the final report, and the recommendations. Many of the
parents in my study express a strong desire for follow-up subsequent the family meeting so
they can ask questions regarding their child’s diagnosis and clarify information about the
team’s clinical recommendations. A few parents were contacted after the family meeting as
they were informed about my research study. In the context of this contact (a telephone call),
the clinical coordinator asked if the parent had any outstanding questions related to their
child’s diagnosis or the recommendations. Several parents embraced this opportunity and
had some of their lingering questions answered which improved their knowledge about the
process of implementing their child’s clinical recommendations. The parents suggest
reducing the length of time between the final family meeting and the contact from the clinical
coordinator—have the clinical coordinator check in sooner as it was very helpful. Amanda
stated, “Get somebody to call and check in sooner, right, so the family meeting was in
November. It’s now March and they’re asking about the research . . . great . . . so could they
get her to call earlier?”

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According to my research finding, follow-up between the family and a healthcare
professional shortly after the disclosure is required to improve health outcomes for the child
and the family. A truly integrated team would include the clinical diagnostic assessment
process, the final family meeting, and a healthcare professional that aids in bridging the
family to the community resources. Perhaps the role of the clinical coordinator can include
follow-up with the parents shortly after the family meeting to verify that the family is linked
to the appropriate community resources.
Several parents in my study were assigned a key worker, which was revealed to be a
protective factor for the child and the family. The key worker was instrumental in creating
the shift from the clinical diagnostic team to the various wraparound services in the
community where the clinical recommendations were applied. The key worker informed the
parents about information on local community services, and in some cases improved the
communication between various systems—the child’s school personnel, allied healthcare
professionals, community agencies, and the parents. A collaborative team was developed
and intervened to alter the child’s developmental trajectory for the well-being of the child.
Unfortunately, some parents were not assigned a key worker nor had any knowledge
of such a professional. The inconsistency of key workers attached to parents is a result of
budget cutbacks and funding issues faced by the larger healthcare system—which in turn,
affects vulnerable children and families, as was shown in my study. Hence, there exists a
need for the clinical teams to engage in dialogue regarding the possibility of having the
clinical coordinator follow up with the parents, enabling a more cost-effective approach and
supporting favourable outcomes for the child’s developmental growth.

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It is not surprising that post-diagnostic support was an area of concern as other
comparable studies indicate a similar experience following the disclosure of a developmental
diagnosis (Crane et al., 2015; Jones et al., 2014; Mansell & Morris, 2004). In the study
conducted by Crane et al. (2015) in the United Kingdom, 40% of parents revealed that they
received no post-diagnostic support, and less than 25% of parents were provided support
subsequent their child’s diagnosis.
The parents had mixed experiences in relation to the final report regarding the
accuracy, clarity, and complexity of the report. The parents who received a summary report
of their child’s diagnosis prior to the family meeting reported a positive experience as it gave
the parents the opportunity to read the summary report and prepare questions before the
meeting, inadvertently making the final report much easier to understand. The clinical
practice of mailing out the summary report prior to the final family meeting was deemed as a
protective factor as clinical teams in various parts of the northern region are providing this
service. The parents who faced difficulty comprehending the final report were not connected
to a key worker and did not receive the summary in advance. My study finding shows that
sending the summary report to the parents at least a week prior to the final meeting will not
only improve the parental understanding of their child’s diagnosis but also assist the parent
with the implementation of their child’s clinical recommendations.
To summarize the discussion of my second study aim, Table 4 lists the protective
factors that facilitate and the risk factors that influenced the parents’ process of implementing
their child’s clinical recommendations.

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Table 4

Protective Factors that Facilitate and Risk Factors that Influenced Parents’
Implementation of Clinical Recommendations

Protective Factors—supports the application

Risk Factors—limits the application of the

of the clinical recommendations

clinical recommendations



The clinical coordinator contacting



the parents shortly after the family

Lack of follow-up from a healthcare
professional.

meeting.


Connecting the parents to a key



Lack of key worker



Not receiving the summary report

worker.


Send the summary report to the
parent—at least one week from the

until the day of the family meeting.

scheduled family meeting.

Summary
My research findings provide a meaningful picture of the overall experiences of the
parents who received a developmental diagnosis by one of the clinical teams in northern
British Columbia. As mentioned above, the clinical teams are situated within a healthcare
landscape that is embedded in a complex social, political, financial, and legal environment.
As a result, a few of the risk factors identified are beyond the scope of the clinical teams, for
example, the under-funding of services and the maldistribution of resources (keyworkers).
The mitigation of these risk factors primarily rests with the executive level of the healthcare
organization. In addition, my study findings yield risk factors that the CDBC teams can
apply at the clinical level to enhance health outcomes for the child and family. In contrast,
my study findings reflect several protective factors that the clinical teams currently practice,
manifesting positive outcomes that really made a difference to the families they serve.

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Practice Considerations
My findings provide practical information that can be applied to the clinical services
offered by the CDBC teams in northern British Columbia. These practices can be
implemented at the clinical team level, building on the team’s strengths and identifying
opportunities for improvement and consistency on the various clinical CDBC teams. I
highlight several feasible practices that can be adopted to improve the way in which the
clinical teams deliver diagnostic information and engage families.
Providing the summary report prior to the family meeting: Providing accurate
information to the family one week before the scheduled final family meeting (by way of
summary report) has a number of benefits for the child and the parents. A few parents in my
study spoke about how the receipt of the summary report prior to their family meeting
facilitated understanding, which led to a rich discussion about their child’s future
developmental trajectory and the necessary paths associated with the recommendation
process. This practice obviously occurs, but it is not applied broadly across all the clinical
teams. Adopting this action by way of a professional practice standard ensures that all
families will receive the summary report prior to the final family meeting. This applied
action resulted in several positive outcomes: it increases parental understanding by giving
parents the time to develop and ask meaningful questions about their child’s diagnosis, and it
reduces the emotional impact of the diagnosis as it provides time for the parents to prepare
mentally and emotionally, diminishing the emotional impact of hearing unfavourable news.
Implement a short recess during the family meeting: One way to mitigate the risk
associated with the parent’s inability to understand emotionally charged information is to
incorporate a short recess subsequent to the delivery of the final diagnosis and reconvene

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once the parent has regained composure (Crane et al., 2015). This is a critical step, as the
parents require a presence of mind to form an understanding of their child’s diagnosis.
Support the use of a recording device during the family meeting: One of the
parents in the study regretted not having recorded the family meeting—over time, pertinent
information was difficult to recall. A number of scholars advocate using recording devices
for several reasons (Price, McNeilly, & Surgeror, 2006). A recording of the meeting will
allow a parent to listen to the information at a later date. It also acts as a safeguard for
parents whose emotions had an impact on their comprehension. Additionally, a recording
can be shared with significant others who could not be present at the family meeting, further
enabling the transmission of accurate information. This proactive intervention works well
for clinicians who do not have the time for follow-up sessions with families after they have
presented their diagnosis (Levetown, 2008). Given that we are in the age of technology,
many individuals have devices that are equipped with a recording mechanism that can be
viewed or used as a form of note-taking to enhance understanding.
Use plain and simple language during the family meeting and simple writing in
the report: It is important for clinicians to shape the practice of their clinical delivery
(content) in a way that is congruent with the parents’ level of health literacy. It is imperative
to deliver and share healthcare information in a manner that facilitates a parent’s ability to
retain, read, and understand their child’s diagnostic information so the parent can make the
best decisions and follow the recommendations that promote optimal child development.
Some parents struggled with the language shared during the family meeting and reading the
final report. One parent suggested restructuring the family meeting by having one clinician
deliver the content, mitigating the risk of confusion. In addition, having a primary clinician

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deliver the diagnostic finding may increase the clinician’s ability to assess and identify what
pertinent information the parent did not understand, prompting the clinician to provide
further information.
Creating culturally safe practices during the family meeting: Northern British
Columbia is home to people from diverse cultural backgrounds. In 2006, 30% of the
residents of Northern British Columbia identified as Aboriginal (Northern Health, b, n.d.).
Investing in creative ways to incorporate cultural practices will improve health outcomes for
families from multicultural backgrounds, First Nations people in particular. Northern Health
and the College of Physicians and Surgeons of British Columbia has committed to mandatory
educational training in Indigenous cultural competency (ICC) for all healthcare professionals
(College of Physicians and Surgeons of British Columbia, 2015). Ensuring that all of the
clinicians on the CDBC clinical teams have completed the ICC training is one way to
strengthen clinical practice when serving First Nations people.
Contact families shortly after the family meeting: The level of contact and support
that the parents felt they needed post-disclosure requires a higher level of approval because it
relates to the budget and financial resources of the organization (key workers). However,
this issue can be raised with the local manager of the northern CDBC teams so that the
department leader can advocate and support the need for a strategic change at the higher
managerial level, emphasizing the improved health outcomes for families and children with
developmental disabilities.
Changing the model of the team by way of one additional clinician—in particular, a
registered social worker—whose primary role is to mitigate the risk factors would intensify
the health outcomes for the child and the family. In fact, most multidisciplinary clinical

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teams include a social worker to address the essential services that the family requires (Klein
et al., 2011; Min et al., 2016). As noted earlier, one frontline action that can be adopted on a
regular basis—at the clinical level—is to have the clinical coordinator contact the families
shortly after the final family meeting as this practice was proven to be very beneficial for the
families.
My research findings reveal important insights into the professional clinical practices
that may guide and inform clinicians on the CDBC teams in northern British Columbia in
relation to the delivery of a child’s developmental diagnosis. Practice considerations are
presented in Table 5 to promote parents’ understanding of their child’s developmental
diagnosis.

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Table 5

Practice Considerations for Delivering a Child’s Developmental Diagnosis with
Parents

Provide the summary report prior to the



family meeting.

Provide the summary of the final report
one week before the scheduled family
meeting.

Implement breaks during the family



Connect the family to a key worker.



Provide a short recess after the disclosure

meeting.

and reconvene when the parents have had
some time to regain composure.

Support the use of an audio recording



device during the team meeting.
Use plain language during the family

Provide the parents with the option to
record the final family meeting.



meeting and use simple writing in the

Adopt a universal health literacy principle
to deter the use of medical jargon.

report.



Write the report in layman’s terms.

Increase clinicians’ cultural competency



Integrate the sharing of food in the

by ensuring that all clinicians have

context of the family meeting to

completed the mandatory training offered

acknowledge difference in cultural ways

by Northern Health.

of learning and reduce parental anxiety.

Provide post-disclosure support for the



Attend ICC training.



The clinical coordinator should conduct a

family.

follow-up call with the family within two
weeks after the final family meeting.


Ensure that the key worker continues to
engage with the family until the clinical
recommendations are implemented.

Change the model of delivery by the
addition of new clinician.



Secure a registered social worker (MSW)
for the team to attend to the emotional
health of the parent(s) and the navigation
of the child’s clinical recommendations.

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Limitations of the Study
Despite the relevant findings into the views of parents in relation to a very critical
part of the delivery of a child’s developmental diagnosis, my study has limitations that
should be kept in mind when considering the findings. The sample size in my study is small.
However, qualitative research does not require large sample sizes, and in my study,
saturation was reached, suggesting that the sample size was sufficient, especially given that
the scope of my research was limited to the final family meeting. Another limitation in
relation to the sample size is the relatively low number of participants from the various areas
across northern BC. The majority of the parents received their child’s diagnosis from the
CDBC clinical team in Prince George and, consequently, it was difficult to get a sense of the
regional variation in clinical practices.
Future Research
My study has begun to lay a foundation for future researchers who are interested in
the experiences of parents who received a child’s developmental diagnosis and their journey
of implementing their child’s clinical recommendations. Current gaps in the knowledge
associated with the importance of implementing a child’s clinical recommendations
subsequent the final family meeting warrant further exploration, specifically regarding the
support and coordination of services provided to the family post-disclosure. The funding
granted to families who have a child with developmental disabilities appears to be nonexistent or much less compared to the funding families receive when their child has a
diagnosis of autism (Autism Society of Canada, 2004). Thus, there is a vital need for more
research on the funding a parent receives when their child has a developmental disability
outside of the autism spectrum.

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Although my study intended to focus on the perceptions of both mothers and fathers,
fathers are, for the most part, under-represented in this research, as the majority of the parents
in this study are mothers. This study also included two parents from different cultural
backgrounds, Latino and First Nations. Future research initiatives in this area could be
encouraged to recruit an equal number of fathers and mothers, allowing an exploration of
gender differences when it comes to understanding how men and women experience the
delivery of their child’s diagnosis in a clinical setting. Similarly, a larger sample size could
be assembled in order to allow for greater cultural diversity, especially a study that takes into
account the relatively large concentration of First Nations families in northern BC. In this
way, differences in perceptions could be examined in light of cultural differences, and
considerations for culturally competent practices could ensue. A sample that includes an
equal number of parents serviced by the various clinical teams across the northern region
could highlight exemplary practice techniques and generate best clinical practice guidelines
for the north region. The logical next step indicated by this research is to operationalize my
study findings and evaluate the level of effectiveness in the near future.
Conclusion
In my study, I explored the factors that facilitated or impeded the parental
understanding of a child’s developmental diagnosis communicated by one of the CDBC
clinical multidisciplinary teams in northern British Columbia. In addition, I explored the
factors that influenced the parent’s journey with the implementation of their child’s clinical
recommendations. My study highlights a set of protective factors that maximized parental
understanding during the final clinical interaction between the CDBC multidisciplinary team
and the family. Also, a set of risk factors limiting parental understanding of the child’s

180
diagnosis were identified. Some of the limiting factors can be managed at the clinical team
level while others require the attention of the executives in the healthcare organization, as the
issues are connected to the fiscal budget. The protective factors identified are consideration
of the location of the clinical setting while delivering undesirable information, validating the
parent’s concerns, and presenting the child’s strengths in a manner that initiates new insights.
Professionalism and clear communication were deemed as favourable clinical practices that
heightened the parent’s understanding of their child’s developmental trajectory, prompting a
positive shift in parenting practice.
The risk factors call for a deeper level of professional awareness in relation to the
inherent power imbalances by tuning into the non-verbal cues that may unintentionally
highlight the discrepancy in the final clinical encounter. Delivering a child’s clinical
diagnosis in the absence of a culturally sensitive approach is described as a barrier that
diminishes parental understanding. The additional risk factors request that clinicians use
plain language while communicating the child’s diagnosis, extension of the time devoted to
the final family meeting, and the need for clinicians to be cognizant that the nature of the
content can have an emotional impact on one’s ability to synthesize the information, and a
new clinical approach that addresses the issue should be encouraged. A number of clinical
practice considerations flowing from my study findings have been devised and can be
adopted, acting as a buffer to mitigate the risk factors and enhancing health outcomes for the
child and family.
Overall, my study is a call to healthcare professionals and researchers to develop
increased knowledge in the area of how parents understand their child’s developmental
diagnosis, recognizing the importance of implementing the child’s clinical recommendations

181
and ensuring that the optimal intervention is provided to the child. As a result, strengthened
services and supports need to be provided post-disclosure, bridging the parents to the
community services to nurture their child’s growth and development toward adulthood.
Reflections
In correspondence with interpretive description, the findings have special relevance
for the clinical teams in the healthcare setting. Through my research journey, I have learned
that the experience of parents receiving a child’s developmental diagnosis is larger than the
final diagnosis. My professional theoretical orientation influenced by social constructivism
made it abundantly clear that the diagnostic disclosure does not occur in a vacuum and needs
to be considered in a broader context of social and cultural nuances to explore the unique
ways parents’ process the diagnostic information. The clinical encounter is a relational
process with different parties confronting a diagnosis—bringing forth different explanations,
understandings, values and beliefs. As such, it is the role of the clinicians during the delivery
process to translate medical information in a way that creates a shared understanding of what
this knowledge means for the parent and the child’s future.
Yes, the receipt of their child’s diagnosis was described as a pivotal turning point in
that their exhaustive search for answers had reached a conclusion. I was intrigued by the
parents’ level of commitment, love, and devotion in the name of their child. It is
disheartening to learn that many of the parents waited several years to receive their child’s
diagnosis, and some of these parents were left to their own devices after the final meeting.
This level of disconnect seems absurd given that the healthcare system provides funding for
highly skilled clinicians to conduct comprehensive behavioural developmental assessments
that include clinical recommendations for the child’s well-being. It is obvious that the health

182
and social services systems need to engage in an in-depth conversation and create a shared
vision for children with developmental disabilities, bridging the diagnostic
assessment/clinical recommendations to the helping professionals employed in the various
community resources. Is there value in a developmental assessment if the recommendations
are not implemented due to systemic issues? Directing and guiding parents in the right
direction subsequent to the disclosure of the diagnosis is paramount to the child’s best
interest.

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APPENDIX A: INTERVIEW GUIDE
1.

What did you find most useful about the family meeting?

2.

Can you describe how the family meeting increased your level of knowledge
regarding your child’s diagnosis or functional assessment?

3.

Can you recall and describe how you felt when you left the family meeting?

4.

What are some of the challenges that you experienced during the family meeting?

5.

What are some of the successes that you experienced during the family meeting?

6.

If you could change one thing about the process what would it be?

7.

In what manner has your child’s assessment changed your situation?

8.

Do you think the delivery of your child’s diagnosis or functional assessment helped
you understand what is needed for your child’s future plan? If so, how? If not, why
not?

9.

What are the major advantages of your child’s recommendations?

10.

What are the major disadvantages of your child’s recommendations? Were you
successful in implementing your child’s recommendations? If so, what was your
experience? If not, what was your experience?

11.

How did the diagnosis or functional assessment impact you?

12.

What factors played a role in you understanding your child’s diagnosis or functional
assessment? What factors played a role in you not understanding your child’s
diagnosis or functional assessment?

13.

What changes would you recommend to the team in order to enhance the
understanding of a child’s diagnosis or functional assessment?

14.

What did you like about the delivery of the diagnosis or the functional assessment?

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15.

What parts of the delivery of the diagnosis or the functional assessment were clearly
communicated?

16.

Did you experience any confusion in regards to understanding the diagnosis or
functional assessment during the family meeting? If yes, what part was confusing?

17.

If you had the opportunity to create your own team and deliver diagnoses or a
functional assessment to parents what would this team look like?

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APPENDIX B: INFORMATION LETTER AND CONSENT FORM

INFORMATION LETTER AND CONSENT FORM
Tammy Pearson (PhD Student Researcher) Shannon Wagner (Faculty Advisor)
250 301 6544 250 960 6320
Tammy.Pearson@unbc.ca shannon.wagner@unbc.ca
Title of Study: “Exploring the Parental Experience of a Child’s Developmental
Diagnoses”
Dear Mr/Mrs/Ms:
My name is Tammy Pearson (researcher) and I am a student at the University of Northern
British Columbia (UNBC) in Prince George, BC. I am pursuing a doctoral degree in Health
Sciences. For my dissertation, I am conducting research regarding the diagnostic process of
children who received a developmental diagnosis by the Northern Health Complex
Developmental Behavioural Conditions multidisciplinary team in Prince George, British
Columbia. The purpose of this study is to explore the experience of parents who have been
through the diagnostic process. You have been invited to participate in this research study as
you have been through the diagnostic process.
What will I be asked to do and what are my rights?
Your participation in this research study will involve being interviewed in person by the
researcher. Your interview will last approximately 90 minutes or less. There is no right or
wrong way to answer and what you say is important. To assist the researcher, I will be asking
you for permission to audiotape the session. The audio recording is to help ensure I capture
detailed information of what is said. Only the researcher will hear the audio recordings,
which will be transcribed to help me understand and appropriately document your
experience. The interview will be conducted in a neutral, safe location of your choice. Upon
completion of the interview an honorarium of $75.00 will be given to thank you for your
time and valuable information.
Your participation in the study is completely voluntary and you are in no way obligated to
participate in this research and there is absolutely no penalty if you do not participate in this
research study. You have the right to confidentiality and anonymity of any information you
provide. As a participant, you also have the right not to answer any question you choose and
withdraw your information without consequences at any point during the research.

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All personal identifying information about you will be kept confidential.
Please understand that all information, including your and your child’s name, will be kept
confidential. To protect your privacy, your transcript or any quotes from your interview will
be assigned a pseudonym (fictitious name) and no identifying information will accompany
your information. Digital and hard copies of any information gathered from you during this
research will be stored on the researcher’s professional computer at UNBC which is located
on a secure server with password and anti-virus protection. Hard copies will be stored in a
locked cabinet in a locked office at UNBC. At the end of my dissertation all audio recordings
will be erased and any other paper/hard copies will be shredded. The electronic file of
analyzed data will be stored on my UNBC computer account for five years, at which point
the electronic file will be deleted. If a professional transcriber is used to transcribe
interviews, a Transcriber Confidentiality Agreement will be signed beforehand.
An exception to confidentiality is disclosure of a child in need of protection that has not been
reported to the Ministry of Children and Family Development (MCFD). Under this
circumstance, the researcher must report this information to MCFD according to legal and
ethical obligations.
What are the benefits and risks of participating in this research study?
There are no guaranteed benefits for your participation in the research study. Possible
benefits for telling your story may result in new insights or understanding about your
particular experience. However, the interview conducted in this study is not intended to be
therapeutic.
I anticipate no risks to you during your participation in this research study. However, as with
any form of self-reflection, your participation may result in new awareness and undesirable
memories. As a result, possible risks to you during the interview may include anxiety or
uncomfortable recall of unpleasant experiences. It is understood that individual participants
may experience some negative effects particular to individual situations. However, please
understand that you have the right to end your participation in this study or revoke your
permission to use your information at any time during the interview or the course of this
research study. If you decide to withdraw from the study, any information that you have
provided up to that point will also be withdrawn and securely destroyed.
If you experience emotional or psychological distress as the result of reflecting upon your
experience with the topic of this study, or participation in this study, you are encouraged to
contact a mental health therapist, and the researcher will provide a list of resources with
referral information.
If you have any questions or concerns following your participation in the research, please do
not hesitate to contact me, Tammy Pearson at 250-301-6544 or via e-mail at
(Tammy.Pearson@unbc.ca). I will be happy to discuss your questions or concerns, or make
any appropriate referrals necessary to resolve your concerns. If you would like to receive

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information indicating the results of this research either with respect to your participation or
with respect to the research as a whole, please let me know during the interview process or
by contacting me at the above phone number and/or e-mail address.
Please keep this information letter for your own records. For further information on your
rights as a research participant or if you have any concerns about this project, please contact
my PhD Faculty Advisor Shannon Wagner (shannon.wagner@unbc.ca) at UNBC or the
Office of Research at UNBC at 250-960-5650 (reb@unbc.ca). I sincerely thank you for your
interest in this study.
Informed Consent
I, [participant’s name], voluntarily consent to participate in the research described herein,
conducted by Tammy Pearson. I understand that my participation is entirely voluntary and
affirm that no pressure has been applied to me to encourage participation. I have received a
copy of this information letter and consent form and understand that my confidentiality will
be protected. The researcher of the project has explained the study and the participation
requirements to me, and answered my questions.
I understand that the purpose of this research project is to gain insight and information
regarding the experiences of parents who have been through the diagnostic process with the
Complex Developmental Behavioural multidisciplinary team in Prince George, BC. I
understand that I was chosen because my child has received a developmental diagnosis by
the above team. The researcher, Tammy Pearson, will use an interview guide to explore my
experience.
1. This consent is given on the understanding that Tammy Pearson will use her best
efforts to protect my identity and maintain my confidentiality.
2. I understand that all citizens are required by law to report situations of a child in need
of protection due to suspected neglect/or physical, sexual, or emotional abuse to the
Ministry for Children and Family Development (MCFD). Any disclosure or failure to
report a child in need of protection overrides any promise of confidentiality, and the
information about suspected abuse must be reported by the researcher to MCFD.
3. I give my consent freely and understand that I may end the interview, refuse to
answer questions, and/or withdraw from the research process at any time.
4. I understand and agree that the information I have given to Tammy Pearson during
our interview will be treated in the following manner: a) I will be assigned a false
name to protect my identity, this information will be stored on the UNBC secured
drive and deleted at the end of the research project. b) The interview will be audio
recorded and transcribed; hand-written notes may be taken during the interview. c)
During the study, this non-identifying data will be stored by Tammy Pearson, in a
locked filing cabinet, in her locked professional office at UNBC. Electronic files will
be stored on her professional computer using a secure log-in, password protected, and
anti-virus software. d) The data will be used by Tammy Pearson and her supervisors
for her research dissertation, presentations, and publications regarding this research.

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e) Following completion of the research project, all paper copies will be burned,
audio recordings will be deleted, and electronic files will be deleted from Tammy’s
professional computer. Five years after the study is completed, the stored electronic
copy will also be deleted.
5. I understand that if I have any comments or concerns, I can contact the UNBC Office
of Research at 250-960-6735 or reb@unbc.ca.
To request a brief written summary of the research report relating to your participation and/or
a brief written summary of the study as a whole, please provide your mailing address or email below. Please be informed that these summaries will be provided upon completion of
the study and will only include concise and conclusive reports, not the entire study.
I would like to receive a brief written summary of the research report relating to my
participation
______ (please check or mark X if yes)
I would like to receive a brief written summary of the study as a whole _____ (please check
or mark X if yes)
Name and address (e-mail or mail) to which report will be sent
______________________________________
______________________________________
______________________________________
______________________________________
______________________________________
____________________________ ___________________
Participant’s Signature Date
__________________________ ___________________
Researcher’s Signature Date

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APPENDIX C: MEMBER CHECKING LETTER
Member Checking Letter
Hello Valued Participant,
In April 2015, you participated in my dissertation research by agreeing to be interviewed
about your experience regarding your child’s developmental diagnosis completed by
Northern Health CDBC team. I very much appreciate your participation! I am writing to ask
if you can once again lend your valuable time by taking a few minutes to review the attached
document. This review is referred to as “member checking” and is a valuable contribution to
my research.
The document is a list of primary themes that had been developed from your interview. It is
my attempt at capturing your overall experience. It was written after analyzing your
transcript. I am conducting a check for accuracy. I am asking you to tell me if you can
recognize your general experience in my description (in the attached document). The
following questions may guide you:
Did I capture the essence of your experience?
Do the list of themes reflect your experience accurately? If not, where is it
inaccurate?
Have I missed something in this description that you feel is essential to your
experience?
After reading the attached document, you may follow up with me in two ways:
First,
Second, if circumstances permit, I would also like to schedule a brief meeting with you to
discuss your reactions to reading this summary description. If a meeting is not possible, I am
hoping that a phone consultation can be arranged.
Once again, I greatly appreciate your participation in this research. Without you, this research
would not be possible! I look forward to meeting with you soon.
Best regards,
Tammy Pearson
Phenomenological research aims to establish a renewed contact with original experience.

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APPENDIX D: ETHICS BOARD APPROVAL