PRIMARY CARE STRATEGIES FOR SUPPORTING PARENTS OF CHILDREN WITH
SUSPECTED AUTISM SPECTRUM DISORDER
by
Mariam Salih
BScN, Langara College, 2009

PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SCIENCE
IN
NURSING – FAMILY NURSE PRACTITIONER

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
August 2018
© Mariam Salih, 2018

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Abstract
ASD is a complex neurobiological disorder requiring early childhood intervention to mitigate
effects on overall quality of life. Without early intervention, individuals and families are
impacted socially, emotionally and economically. In BC, wait lists for a formal assessment and
diagnosis are longer than a year. Parents of children with suspected ASD are often left in an
anticipatory waiting phase once ASD is suspected. They require guidance on learning what ASD
is, developing knowledge about treatment approaches, and determining what resources and
supportive measures are available to them. The mainstay approach to assessment is initially via a
primary care provider. As such, the primary care provider (PCP) is the first source of guidance
when concerns about a child are raised, and is responsible for referring the child for diagnosis,
and providing parents direction on where to obtain interventional therapies. However, there is
limited guidance on how to support parents during the anticipatory period of time between
suspicion of symptoms and diagnosis. The aim of this project is to explore strategies that enable
PCPs when caring for parents of children with suspected ASD. An integrative literature review
was conducted, which included ten carefully selected articles. Two major themes were identified,
which focused on concepts of knowledge and communication. Knowledge linked to the PCP
included the need for up-to-date developmental, clinical, communication understanding and tacit
knowledge. Communication is essential during waiting and early diagnosis, and in aspects of
PCP availability, multidisciplinary collaboration and supportive decision-making. These key
aspects help to prepare families to flourish in their recreation of family life. Attention to parent
health and wellbeing is critical, as is the need to discuss difficult topics such as emotional stress
and service limitations. Patient and family centred care (PFCC) is reported as a health care model
that illuminates the importance of respect, rapport and trust, while affording accord, equity and
collaboration. Using the PFCC model as a polestar, the PCP can navigate care focusing on cocreating longer term relationships between primary care, parents, interventions teams and early
education partners.
Keywords: autism spectrum disorder, parent-PCP relationship, primary care

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Table of Contents
Abstract ........................................................................................................................................... ii
List of Tables & Figures..................................................................................................................iv
Glossary of Terms ............................................................................................................................ v
Acknowledgements ....................................................................................................................... vii
Introduction ...................................................................................................................................... 1
CHAPTER ONE: BACKGROUND ................................................................................................ 5
Epidemiology and Prevalence ...................................................................................................... 5
Autism Spectrum Disorder: Pathophysiology and Diagnostic Criteria ....................................... 6
ASD Medical Management .......................................................................................................... 9
Factors Contributing to Late Diagnosis and/or Intervention ...................................................... 11
The Health Impact of ASD on the Family ................................................................................. 13
The PCP Role in Early Childhood Development and Promoting Early ASD Identification ..... 15
The PCP Role in Early Referral and Following an ASD Diagnosis .......................................... 17
Exploring the Gaps in the PCP Role .......................................................................................... 18
Patient and Family Centered Care .............................................................................................. 19
CHAPTER TWO: METHODS ...................................................................................................... 23
Inclusion and Exclusion Criteria ................................................................................................ 24
Preliminary and Secondary Search ............................................................................................ 26
Grey Literature and Supporting Literature ................................................................................. 28
Data Analysis ............................................................................................................................. 28
CHAPTER THREE: FINDINGS ................................................................................................... 30
Primary Care Provider Knowledge ............................................................................................ 31
Communication .......................................................................................................................... 45
CHAPTER FOUR: DISCUSSION, IMPLICATIONS FOR PRACTICE, AND
RECOMMENDATIONS ............................................................................................................... 55
Personal and Professional Attributes.......................................................................................... 57
Organizational and Parent Attributes ......................................................................................... 62
Recommendations ...................................................................................................................... 68
Limitations and Recommendations for Future Research ........................................................... 73
Conclusion ...................................................................................................................................... 75
References ...................................................................................................................................... 77
APPENDIX A: MODIFIED CHECKLIST FOR AUTISM IN TODDLERS, REVISED ............ 85
APPENDIX B: CONCEPT MAP .................................................................................................. 86
APPENDIX C: LITERATURE SEARCH BOOLEAN COMBINATIONS ................................. 87
APPENDIX D: CRITICAL APPRAISAL SKILLS PROGRAMME CHECKLISTS .................. 88
APPENDIX E: LITERATURE MATRIX ..................................................................................... 89

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List of Tables & Figures
Table 1:

Primary Care Provide Causes for Delay

19

Table 2:

Inclusion/Exclusion Criteria

25

Table 3:

Search Terms: Major Concepts, Mesh Terms and Subject Headings

26

Table 4:

Patient Family Centred Care Model

56

Table 5:

Primary Care Provider Recommendations for Practice

70

Figure 1:

Search Flow Diagram

27

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Glossary of Terms
Autism Spectrum Disorder: a neurodevelopmental disorder, defined as “persistent deficits in
social communication and social interactions across multiple contexts” (American Psychiatric
Association [APA], 2013a, p. 31)
Comorbidity: The co-occurrence of one or more diseases or disorders, concomitant or coinciding
with a primary disease or disorder (Kessler, 1995)
Complementary Alternative Medicine: Health care practices and interventions that exist outside
of conventional medicine (Zollman & Vickers, 1999)
Education: A formal process of learning experiences, designed to acquire knowledge (MerriamWebster Online, n.d.).
Evidence-Based Practice: The conscientious, explicit and judicious use of current best evidence
in making decisions about the care of the individual patient, integrating individual clinical
expertise with the best available external clinical evidence from systematic research (Sackett,
1997)
Medical home: Defined as a philosophy of primary care that is patient centred, comprehensive,
team-based, coordinated, accessible, and focused on quality and safety (Patient Centred Primary
Care Collaborative, n.d., paragraph 1).
Primary Care Provider: The health care provider who operates at all levels of care, including
prevention, pre-symptomatic detection of disease, early diagnosis, diagnosis of established
disease, management of disease, management of disease complications, rehabilitation, palliative
care and counselling (WHO, 2004)
Primary Care: first-contact care with a health care professional where the majority of non-acute
health problems are treated. It is the principal point of continuing care and/or referral to specialist
treatment (WHO, 2004).
Quality of Life: “An individual's perception of their position in life in the context of the culture
and value systems in which they live and in relation to their goals, expectations, standards and
concerns. It is a broad ranging concept affected in a complex way by the person's physical health,
psychological state, personal beliefs, social relationships and their relationship to salient features
of their environment.” (WHO, n.d.-d)
Red flags: A concept of a warning symptom or clinical finding indicating the presence of a more
extensive disease or disorder (Segen, 2002).
Self Efficacy: An individual’s belief in their ability to perform a specific presenting or future task
or skill (Bandura, 1977).
Screening: Targeted testing to identify individuals with specific infection, disease, disorder or
health condition (WHO, n.d.-c).
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Public Health Surveillance: Systematic, continuous data collection, analysis and interpretation to
measure trends or outcomes in a population that requires further investigation or intervention if
warranted (WHO, n.d.-b).

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Acknowledgements
I would like to express my gratitude to my supervisors Dr. Caroline Sanders and Lauren Irving
for believing in my scholarship, and tirelessly providing me with support and advice throughout
this project. Thank you so much.
Thank you to my friends and family, who gave me much love and support throughout this
program, witnessing my brightest and darkest moments.
Finally, thank you to my parents. Your trials and tribulations throughout life gave me perspective
into the unmet needs of parents of children with autism. Your resilience and strength inspired me
to support families facing similar challenges within my own professional practice. More
importantly, thank you for inspiring me to face my own challenges with the same strength and
resilience that I see in you. I am forever grateful.

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Introduction
Autism spectrum disorder (ASD) is a lifelong complex neurodevelopmental disorder that results
in a spectrum of developmental (dis)abilities (Weill, Zavody & Sounders, 2018). Caring for a
child with ASD in the family setting is recognised as challenging and burdensome, resulting in
caregiver vulnerability and stress (van Tongerloo et al., 2015). In Canada, the economic impact
of caring for children with ASD over their lifetime is as high as $5 million CAD, with an average
cost of approximately $75,000 CAD annually per child (Dudley & Emery, 2014; Lyall et al.,
2006). Indirect costs can be attributed to decreased parental productivity and increased care needs
(CDC, 2016).
Evidence-informed practice significantly improves the child’s long-term developmental
outcomes, and enhances the quality of life for children with ASD and their families (Weill,
Zavody & Sounders, 2018). Early recognition of symptoms and referral for ASD assessment can
promote early diagnosis, which is important for parents and their child with ASD in accessing
appropriate resources and management interventions (Zwaigenbaum et al., 2015). Without early
intervention, individuals frequently struggle with social acceptance, and are impacted
emotionally and economically (Khowaja, Hazzard & Robins, 2015). Intervention itself includes a
range of treatments, comprising of family education and behaviour intervention (CDC, 2016).
However, as a result of various initial presentations, engagement, and service provision factors,
children can experience a delay in receiving a diagnosis of ASD. Therefore, when ASD is
suspected in young children, aged between 18-36 months, early referral for focused assessment
and evaluation is considered best practice.
Within the context of primary care management of a child with suspected or diagnosed
ASD, primary care providers (PCPs) play a pivotal role in care. As such, PCPs need to have
knowledge of ASD, and the accompanying skills to sufficiently support the child and their family
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(van Tongerloo et al., 2015). Knowledge of developmental surveillance, ASD red flags and
screening tools increase earlier referral and diagnosis, improving the heavy costs attributed to
later intervention (Ip et al., 2015). PCPs seeking educational opportunities on ASD enhance the
patient care experience by becoming a supportive source of information to parents, and improve
timely access to early intervention (Carbone, Behl & Azor, 2010; Garg et al., 2014).
In addition to increasing PCP knowledge, studies report that there is a need for
collaboration between PCPs, parents, and the multidisciplinary team to effectively provide early
intervention, assistance, and practical guidance for managing children with ASD (Carbone, Behl,
Azor, & Murphy, 2009; van Tongerloo et al., 2015). Parents often report that PCPs do not elicit
their presenting concerns about their child with suspected ASD, which can result in parent-PCP
communication challenges (Bloch & Gardner, 2007; Mulligan et al., 2015). Barriers to
establishing parent-PCP collaboration are further compounded in settings where populations
experience low socio-demographic variables, such as poor maternal education (Fountain, King &
Bearman, 2011). Challenges establishing partnerships at the parent-PCP level result in
relationships that lack trust or respect (Khowaja et al., 2015).
Current literature, including clinical practice standards and pathways, support the
importance of establishing and maintaining strong parent-PCP relationships via establishing good
communication, partnership, and ongoing involvement to address ASD management (Dua, 2003;
National Institute for Health and Care Excellence [NICE], 2017). However, ASD studies with
younger children often focus on assessment, with little investigation in to focused evidenceinformed strategies that promote relationships, establish, sustain, and reconcile communication in
the partnership to foster ongoing engagement (Fewster & Gurayah, 2018; van Tongerloo et al.,
2015; Weill, Zavodny & Souders, 2018). Of note, over the last few decades numerous models
have been adopted that can help to foster professional-parent partnerships; for example, the
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expert model, the transplant model, the consumer model (Cunningham & Davis, 1985), the social
systems model (Appleton & Minchom, 1991) and patient and family centred care (PFCC) model
(Bellin et al., 2011). Such models provide conceptual frameworks through which professionals
can view, understand, and enhance their interaction with parents. Within the last eight years, a
patient and family centred approach to care (PFCC) has being proffered as an ideal model of
service delivery in children with ASD (Carbone, Behl & Azor, 2010). However, there are barriers
to understanding how this model informs and guides practice i.e. how PCPs assess younger
children in primary care with either suspected ASD or a new diagnosis (Carbone, Behl & Azor,
2010). Furthermore, such models are often viewed through the lens of a professional perspective,
which can result in uncertainty about how accurately models explain, describe, or represent
parent’s perspectives. This project therefore seeks, in part, to understand how these models of
care may facilitate the PCP role when working with young children aged 18-36 months with
suspected ASD and their families in primary care settings.
While the interest in this capstone project was initially based upon personal experience,
discussions with staff during clinical experiences consolidated thinking around the need for
evidence-informed guidance in various areas linked to young children and ASD. Reflecting on
these dialogues warranted further consideration for children aged 18 to 36 months with suspected
ASD, specifically focusing on how PCPs approach difficult topics, engage parents, and support
ongoing collaboration when concerns are raised. Public health nurses (PHNs) and PCPs provided
anecdotal evidence of their experiences working with parents of young children suspected to have
or with a new ASD diagnosis. These providers identified challenges when conveying concerns on
child development, and were concerned if parents understood the intervention information
provided, or if parents followed up on their appointments with specialists. Health providers
voiced unfamiliarity on the availability of local social supports, and reported that once a child had
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been referred for an ASD assessment they often did not receive follow-up from the referring
provider. Such conversations supported the decision to focus on the issues identified within this
review. Therefore, the question that this review aims to answer is as follows: “What are primary
care strategies for supporting the parent(s) of children aged 18-36 months with suspected ASD?”

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CHAPTER ONE: BACKGROUND
The following chapter provides a background understanding of this project’s review question:
“What are primary care strategies for supporting the parent(s) of children aged 18-36 months
with suspected ASD?” This chapter will first examine the epidemiology and prevalence of ASD,
and its pathophysiology and diagnostic criteria. The medical management for the condition,
factors contributing to late diagnosis/interventions, followed by an exploration of the health
impacts on the child and family will also be considered. Because the focus of this review is
during a specific time in the diagnostic process of ASD, the timeline of symptom recognition,
referral, assessment, diagnosis and intervention will be explained, along with an account of the
PCP’s role throughout the process, highlighting their role in early childhood development, ASD
identification, referral, and parent support pre-and-post diagnosis. Finally, benefits of a health
care model will be considered as an enhancing factor in communication and care between family
and PCP.
Epidemiology and Prevalence
The prevalence and distribution of ASD is estimated to be at least 1.5% in developed
countries (Baxter et al., 2015). Males are diagnosed at a higher rate than females, with four males
diagnosed to every one female; of note, females diagnosed with ASD are likely to demonstrate
more severe traits of ASD (Statistics Canada, 2015; Lyall et al., 2017). Prevalence of ASD
diagnosis has been increasing over the last few decades, with a reported increase of 1:150
children in 2000 to 1:66 in 2015 (Centers for Disease Control and Prevention [CDC], 2016). This
increased prevalence may be the result of various factors, such as changes to the diagnostic
criteria and increased societal awareness of ASD resulting in earlier presentation for assessment
and screening in primary care (Wright, 2017). Suggested biological and social factors of delayed

5

parenthood and viable premature births may also contribute to its increasing societal prevalence,
which is further discussed in the next section (Wright, 2017).
There is a significant cost impact for families of children with ASD and the overall
economy. These costs can be directly related to intervention, estimating up to $40,000-$75,000
CAD per child, or indirectly related to decreased parental productivity in the work force, and
increased care needs (Lilly et al., 2006). As children age out of government funding and higher
needs for caregiving are required, the costs to the family also increase. The caretaking costs for
individuals over the age of 14 severely impacted with ASD can be upwards of $150,000 CAD a
year, or “$5.5 million [CAD] above the costs of a neurotypical individual” over a lifetime
(Dudley & Emery, 2014, p.1). It is difficult to determine if the cost of care is affected by a
delayed ASD diagnosis (Horlin, Falkmer, Parsons, Albrecht & Falker, 2014). However, it is
suggested “a delay in diagnosis could indirectly increase costs by neglecting symptoms that may
respond to more immediate intervention” (Horlin et al., 2014, p.8). Therefore each additional
reported symptom of ASD results in a higher cost of care to the family and economy (Dudley &
Emery, 2014; Horlin et al., 2014). To better understand the pathophysiology of ASD, the
following section will examine the diagnostic criteria of ASD and its impact on child
development.
Autism Spectrum Disorder: Pathophysiology and Diagnostic Criteria
The pathophysiology behind ASD is complex, since there is no known cause and a wide
variation in clinical presentation (Chaste, 2012). While various theories aim to explain and drive
ASD pathophysiology research, this continues to be a developing area of study (Yenkoyan,
Grigoryan, Fereshetyan & Yepremyan, 2017). There are more than 20 factors that may be linked
with increased ASD risk (Lyall et al., 2017). Fully appreciating how these factors influence ASD

6

pathophysiology is beyond the scope of this review, but key issues are briefly outlined below.
ASD is associated with a strong genetic component, as well as epigenetic and environmental
factors (Chaste, 2012). Genetically, ASD is caused not by an isolated gene, but by a combination
of multiple genetic variants (Chaste, 2012). Given the sharing of genes across siblings, brothers
or sisters of children with ASD are more likely to demonstrate ASD traits (Statistics Canada,
2015). A child born prematurely or having a father of older paternal age correlates with an
increased risk for having ASD (Wright, 2017). Possible maternal factors that may affect risk of
ASD include short inter-pregnancy intervals, and maternal hospitalization with infection during
pregnancy (Lyall et al., 2017). Additionally, prenatal exposures to illicit substances, anti-epileptic
medication such as valproate, or environmental toxins found in air pollution have also
demonstrated increased risk of ASD or autistic traits (Karst & Vaughan Van Hecke, 2012; Lyall
et al., 2017).
The American Psychiatric Association (APA, 2013b) describes ASD as a
neurodevelopmental disorder that results in a spectrum of (dis)abilities for the child. The onset of
symptoms is commonly seen in early childhood, typically before 3 years of age, with more recent
studies suggesting symptoms can emerge from 6-18 months of age (Szatmari et al., 2016). ASD
is defined as “persistent deficits in social communication and social interactions across multiple
contexts” (APA, 2013a, p. 31). In 2013, the Diagnostic and Statistical Manual of Mental
Disorders’ (DSM-5) standard of diagnosis for ASD was updated and became an umbrella term to
include four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative
disorder, and pervasive developmental disorder (APA, 2013a). The changes aimed to simplify the
diagnosis process, while also retaining its sensitivity (APA, 2013). The DSM-5 definition for
ASD is the standard used in Canada, and is comprised of three criteria:
1) Social-emotional deficits in social, emotional or conversation interactions
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2) Non-verbal communication behaviour deficits that are used in social interaction
3) Difficulty understanding, developing, and maintaining relationships
In addition to the three criteria, the criteria for diagnosis determines the severity levels of
two other domains; these levels of severity reflect the level of support required to manage the
limitations in an individual’s life. Domains include:
1) The level of severity of restricted, repetitive patterns of behaviour, demonstrated by
preoccupation with parts of objects, rigid routines and rituals, and repetitive motor
mannerisms, and
2) The level of severity of social communication impairments, demonstrating an
inability to develop relationships with peers at the appropriate developmental level.
Once demonstration of the three criteria and specified severity is established, the
diagnosis may be accompanied by intellectual or language impairments and associated
neurodevelopmental or medical conditions.
Along with the formal diagnosis and its level of severity, children with ASD can also
experience co-morbid medical conditions and systemic difficulties linked to sensory
impairments, gastrointestinal problems, sleep difficulties, and immunity problems (Lyall et al.,
2017). Challenges with attention, anxiety, and depression can further affect sleep patterns, which
in turn exacerbate attention capacity (APA, 2013b). The next section will discuss ASD
intervention and medical management of its comorbidities, followed by a discussion of factors
that may lead to delayed intervention, and its health impacts on the family.

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ASD Medical Management
The goal of interventions and treatments are to maximize the child’s quality of life,
improve family function and independence, and minimize the core features of ASD (Earles &
Currie, 2011). Depending on a child’s needs, intervention can include a single form of therapy, or
a combination of multiple treatments. Generally, most interventions aim to address the
impairments defined within the DSM-5, including social-emotional abilities, communication, and
relationship skills (APA, 2013a). Using speech-language pathology and occupational therapy,
communication interventions often focus on the nuance of language and interpretation,
expression, or where possible, finding ways for the non-verbal child to effectively communicate
(APA, 2013a). Behavioural interventional approaches also focus on developing body movement,
exploring ways in which to promote attention capacity, and managing expressive outbursts
(Earles & Currie, 2011). Social aspects of management build on drawing the physical, speech and
language, and behavioral therapies together to help the child to build friendships and community
(Earles & Currie, 2011). Complementary alternative medicine (CAM) such as music activities,
arts or pet-based therapies are incorporated into treatment approaches (Earles & Currie, 2011;
Hennel et al., 2011). Finally, cognitive skills are enhanced with tailored approaches to learning
based on assessment of the child’s learning capacity and capability (Earles & Currie, 2011). In
supporting the child through various interventions, social and behavioural issues linked to
physical wellbeing can be addressed; for example, aggression, self-injury, eating, sleeping, and
toileting (Earles & Currie, 2011).
Children receiving intensive intervention during the early stages of childhood i.e. before
the age of five, demonstrate better outcomes of treatment. Benefits include improved cognitive,
language and adaptive behaviour (Elder, Kreider, Brasher & Ansell, 2017). Such improvements
have a positive impact on the child’s adaptive functioning in their daily living skills and social
9

behaviours (Elder et al., 2017). In contrast, later intervention correlates with decreased
functioning and quality of life as children enter adulthood (Gardiner, 2014).
Children with ASD often need additional medical treatments aimed at managing
associated physiological symptoms i.e. gastrointestinal (GI), sleep, and seizure (Earles & Currie,
2011). For children with ASD the combination of altered muscle tone, motor difficulties, sensory
challenges, hyposensitivity to rectal sensations, and food selectivity commonly result in GI
disturbances (Weill et al., 2018). Constipation can be a cumulative factor in changes to
behaviour, toilet training, pain, and food intake, therefore it warrants early management. This
brings additional burdens for parents, since the child with ASD may be reluctant to take
medications or experience food and fluid aversions (Memari, Ziaee, Mirfazeli & Kordi, 2012).
Disordered sleeping patterns and epilepsy are other possible comorbidities associated with ASD
(Accardo & Malow, 2014). Current medical opinion offers that the association between ASD
sleep and seizure activity relates to atypical neurodevelopment (Accardo & Malow, 2014).
Insomnia, which is commonly seen in children with ASD, can have consequences on a child’s
learning, mood and behaviour, while also “lower[ing] the threshold for seizure in persons with
epilepsy” (Accardo & Malow, 2014, p. 203). In addition to the child’s sleep deprivation, parents
often experience a lack of sleep as a result of needing to supervise their non-sleeping child
(Accardo & Malow, 2014).
Holistic management of the child with ASD is complex. Treatments, both medically and
behaviourally, have the capacity to enhance the child’s long-term outcome and their families’
quality of life. Access to services can be costly and limited with issues linked to rurality (O’Neill,
Koehn, George & Shepard, 2016). In British Columbia (BC), government funding for
interventional services is approved after a child receives an ASD diagnosis (Ministry of Children
and Family Development [MCFD], 2017). However, funding for treatment decreases
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dramatically after the age of six. Before six years old, families are provided $22,000 CAD a year
for intervention services, therapies, and parent respite. Funding goes towards a variety of
services, depending on the child’s individualized care plan and family decision-making. Services
can include caregivers, therapists, specialty programs, or equipment. After the age of six, and
until the age of 18, funding is reduced to $6,000 a year. This funding cutback occurs when the
child enters the education system, which becomes the expected primary source of interventional
services. Children diagnosed at a later age therefore risk losing the funding that is imperative to
early interventional treatment and therapy. The next section will discuss factors contributing to
later diagnosis.
Factors Contributing to Late Diagnosis and/or Intervention
As a result of the complexities and length of time from first identifying concerns to
diagnosing a child with suspected ASD, Canadian children typically receive a diagnose around
the age of four (Zwaigenbaum et al., 2015). The current position behind understanding why there
is variation behind delayed diagnosis is multifactorial (Mandell, Novak & Zubritsky, 2005; Roux
et al., 2016; Siklos & Kern, 2007). For example, missed opportunities may be caused by gender
expectation and distribution. With a higher prevalence of ASD in boys, symptoms in females are
often not recognized, resulting in a delayed or even missed diagnosis (Siklos & Kern, 2007). In
first time parents, children may receive a later diagnosis due to ‘new parents’ being unfamiliar
with expected developmental milestones, remaining hopeful that their child will ‘grow out’ of the
behaviours that they are witnessing, or not yet trusting their intuition (Bickel, Bridgemohan,
Sideridis & Huntington, 2015; von Tongerloo et al., 2015).
Access to services can also be a confounding factor in timely diagnosis, since children

11

living in rural areas1 may receive a diagnosis up to 0.4 years later than their urban counterparts,
due to decreased resources or limited professional expertise in observing and identifying children
with suspected ASD (Mandell, Novak & Zubritsky, 2005; Roux et al., 2016). A lower
socioeconomic status is also noted in children who receive a later diagnosis than their more
affluent counterparts (Fountain, King & Bearman, 2011; Mandell, Noval & Zubritsky, 2005).
Current ASD research may contribute to variation in evidence-based practice, and
generate delays in ASD diagnosis. Most studies looking to identify at-risk children are
retrospective (Zwaigenbaum et al., 2009). Retrospective studies include observing home videos
of children diagnosed with ASD, and listening to parent historic reporting of their observations
and experiences prior to their child’s diagnosis (Zwaigenbaum et al., 2009). Retrospective studies
provide a limited source of information, because of the potential inaccuracies from poor recall,
misclassification of information, or biased selection of information (Sauerland, Lefering &
Neugebauer, 2002). More recent research focusing on earlier identification of ASD in younger
children is prospective, and includes surveillance of developmental delays, and closer monitoring
of children with ASD siblings (Zwaigenbaum et al., 2009). At the time of this review,
prospective research remains limited; therefore both retrospective and prospective studies
continue to be used to guide clinician practice in early childhood ASD recognition. The ongoing
gaps in research and its limitations are therefore reflected in the gaps in primary care that lead to
delays in attaining earlier diagnosis and intervention.

1

Rural communities can be defined as small populations spread over large distances (Smalley & Warren, 2012).
Rural populations face challenges of geographical barriers and limited human resources, creating a barrier accessing
primary care (Smalley & Warren, 2012)

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The Health Impact of ASD on the Family
The impact of ASD affects both the child and their parents. ‘Parents’ is used to
encompass all terms that describe the person(s) raising a child with ASD. Related terms include
mother, father, family, or caregiver. Compared to caring for children other developmental
disabilities such as Down Syndrome or Cerebral Palsy, parents of a child with ASD report lower
quality of life scores (Gardiner, 2014). Brown, MacAdam, Crisp, Wang and Iarocci (2006) report
that less than 50% of parents with children with ASD reported satisfaction with key aspects of
quality of life linked to their careers, leisure time, and community engagement (as cited in
Gardiner, 2014, p.21).
Parents first describe overwhelming negative emotional experiences beginning as soon as
they sense something ‘different’ about their child (Bloch & Gardner, 2007). Parents describe
confusion, fear and grief during and after the ASD diagnostic process (Bloch & Gardner, 2007;
Mulligan et al., 2011). Physically and emotionally for parents the high demands of having a child
with ASD can result in general physical and mental fatigue (Karst & Vaughan Van Hecke, 2012).
Such a combination of factors results in parents of ASD children experiencing increased marital
strain and increased rates of short- or longer-term clinical depression as compared to parents of
children with any other developmental disability (Blackledge & Hayes, 2006; Gardiner, 2014;
Karst & Vaughan Van Hecke, 2012). The impact of ASD on children and their parents can be
further complicated by its associated comorbidities, such as obesity, anxiety disorders, sleep
disorders, and Attention-Deficit Hyperactive Disorder (ADHD) (Memari, Ziaee, Mirfazeli &
Kordi, 2012). In addition, any ongoing lifestyle presence of harmful factors such as substance
abuse, linked to higher risks of having a child with ASD, may continue to negatively impact the
physical and mental health of parents (Karst & Vaughan Van Hecke, 2012).

13

A key aspect of parental stress is linked to limited access to services as described by
Gardiner (2014), reporting that families of children with ASD have both unmet service referral
needs and unmet family support requirements. The financial burden associated with intervention
cost is also exacerbated by the time parents have to take to attend appointments, distance to
travel, and need for transport, which can result in loss of earnings (Cidav, Marcus & Mandell,
2012). For marginalized populations such as children and their families living in rural
communities, care is compounded by poor accessibility to necessary resources, which includes
rugged geographical landscapes affecting commutes to appointments, long distances, and
unavailable human resources (Mandell, Novak & Zubritsky, 2005). The risk of health care
isolation is also increased in families from different cultures, single parents, teen parents, low
parent education, or parental depression, who may be unaware or underexposed to available
resources (BC Ministry of Healthy Living and Sport, 2009).
Initially, many parents report low confidence in their knowledge of childhood
development and cite the PCP as their primary source of information (Hennel et al., 2016).
Conversely, some parents report that as they navigate the challenges of seeking a diagnosis or
following a new ASD diagnosis, they feel dismissed or unsupported emotionally by their PCP,
which contributes to their burnout (Bloch & Gardner, 2007; Gardiner, 2014). Following
diagnosis, parents feel dissuaded when faced with either limited intervention resources within
their community, or when primary care providers are unable to help them navigate and access
timely treatment interventions (Mulligan et al., 2011).
As parents become experts in the care of their child, they report feeling that their
capabilities go unrecognized by PCPs, which results in parents no longer seeking their PCP
support, even during times of need (Carbone et al., 2010). Children with ASD are therefore less
likely than other children with medical conditions to have a medical home (Brachlow, Ness,
14

McPheeters & Gurney, 2007). The medical home and robust relationships with health care
providers are associated with better access to specialty services, improved patient outcomes and
satisfaction, and decreased cost of care (Brachlow, Ness, McPheeters & Gurney, 2007).
Therefore, a strained or fragile relationship between parents and health care providers can impact
the overall health outcomes of the child, particularly if their care requires access to specialists, or
specialty services. To better understand impacts on the parent-PCP relationship, the following
sections will describe the PCP role during early childhood development and during ASD
identification, referral and diagnosis.
The PCP Role in Early Childhood Development and Promoting Early ASD Identification
Early childhood is described as the first five years of a child’s life and is valuable in
children’s cognitive and social skill development (WHO, n.d.-a). Many determinants influence a
child’s early development such as: environmental factors including housing, socioeconomic
status, family education/literacy; biological factors such as gender, prenatal health, and nutrition;
interpersonal relationships including social networks, parent styles, peer-to-peer interactions; and
early childhood experiences including parent-responsiveness, trauma, and participation in
physical and cognitive learning activities (Weins, 2014). Considering the value of early
childhood the early recognition of ASD signs provides better opportunities to influence the
child’s neurodevelopment, and minimizing ASD’s limiting impairments in social-emotional
interaction, communication, and relationships. PCPs are therefore influential in early childhood
development, as they have a role in general developmental surveillance, screening for ASD red
flags, and completing regular health checks for all children under their care.
Both the Canadian Paediatric Society (CPS) and the BC Government guidelines
recommend an enhanced assessment to identify concerns or promote positive health behaviours

15

that may enhance childhood development, and to look for specific milestones at 12, 18 and 24
months (Williams, Clinton & CPS, 2011; MCFD, 2017). The suggested visit at 18-months
includes a health supervision guide such as the Rourke Baby Record, a developmental
surveillance tool, screening for parental morbidities, promotion of early literacy activities, and
information on community-based early childhood resources (Williams, Clinton & CPS, 2011). In
Canada, children also expectantly encounter a health care provider or PCP at 18-months for
scheduled immunizations (Williams, Clinton & CPS, 2011). However, children may not routinely
see a PCP again until scheduled immunizations prior to beginning kindergarten at age five, which
are often completed by public health nurses (PHNs) (Williams, Clinton & CPS, 2011). Within
this gap, there is risk for missed opportunity in identifying or addressing developmental concerns.
The onus is therefore often left on the parents to proactively call and book appointments for their
children should they have concerns. However, the complexity of noting ASD signs remains
difficult in the early years, and although symptoms can be recognised as early as 18 months, only
20% of children are identified before the age of 3 years (Guthrie, Swineford, Nottke & Wetherby,
2013). Therefore, current approaches to routine PCP ‘development checks’ are complex and
varied, dependent on human resources and developmental knowledge of health care providers
and parents.
Identifying young children in primary care, that either presents or are referred i.e. from
public health nurse with suspected ASD, requires the PCP to be adept in a range of skills. The
PCP needs to be competent in completing scheduled and timely developmental check-ups,
reviewing antenatal and family history, eliciting, listening to, and appreciating parental concerns,
and visually assessing the child in the clinic setting (Weill et al., 2018).
More recently, The Canadian Task Force on Preventive Services does not recommend
universal screening for ASD (CTFPS, 2016); however, if ASD is suspected, focused screening is
16

advised. The PCP must be able to access and apply ASD-specific screening tools with skills,
capacity, and confidence. There are numerous ASD screening tools; for example, the Modified
Checklist for Autism in Toddlers, Revised (M-CHAT-R) (see Appendix A) is an efficient and
evidence-based tool, commonly used in Canada that can be completed by both parent and PCP
(Weill et al., 2018). Examining the sensitivity and specificity of such tools and knowing when to
most effectively apply these in primary care practice is outside the scope of this paper. However,
the PCP must have awareness and up-to-date training on how to use such tools to ensure that
comprehensive surveillance and screening is completed in a timely manner, avoid jumping to
conclusions, and link clinical impression with intuition and parent history (Anagnostou et al.,
2014).
The PCP Role in Early Referral and Following an ASD Diagnosis
Once ASD is suspected, attaining a diagnosis follows a certain assessment protocol. The
PCP’s primary role is to facilitate the referral process, often to a pediatrician or a specialist
multidisciplinary team. Once the PCP initiates a referral process, as well as an audiology
evaluation, they are expected to provide parent direction towards early intervention (Earles &
Currie, 2011). If the PCP has concerns that include global or neurological delays, appropriate
referrals are made to the necessary specialists (neurology, etc.) (Earles & Currie, 2011). Once
referral is received, a specialized multidisciplinary team completes a formal diagnosis for ASD.
The assessment includes a formal psychological assessment, speech-language-communication
assessment, and a medical evaluation (Dua, 2003). The multidisciplinary team may include a
paediatrician, clinical psychologist, child psychiatrist, and speech-language pathologist and/or
occupational therapist (Dua, 2003). Additional assessments may also include a comprehensive
family assessment (Dua, 2003).

17

With the recent simplification via DSM-5 ASD diagnostic criteria, there has been a
growing body of research dedicated to improving early diagnostic process and assessment policy
(Penner, Anagnostou, Andoni & Ungar, 2018). However, the process still remains timeconsuming and complex. In BC, the wait time for a formal assessment and diagnosis following
PCP referral is over 55 weeks, often leaving parents in a “grey zone” of waiting and uncertainty
(Provincial Health Services Authority [PHSA], 2018).
Following diagnosis, the CPS and BC guidelines recommend that the PCP provide
parents with ASD information, help parents to network with their provider/peer community, and
facilitate links between the education system, financial assistance, and diagnostic/treatment
resources. The CPS further recommends PCPs become advocates for change by campaigning for
improved early childhood resources in their community by using standard guidelines and fee
codes in their province for the 18-month enhanced visit (Penner, Anagnostou & Ungar, 2018)
promoting the well child visit to colleagues, and supporting research and pilot programs
(Williams, Clinton & CPS, 2011). Finally, it is recommended the PCP collaborate with
disciplines in the health and educational sectors to provide coordinated, comprehensive care for
the child with ASD (Carbone, Behl & Azor, 2010). The following section aims to highlight the
current PCP gaps and system challenges in light of the recommendations outlined by the
Canadian Pediatric Society (Williams, Clinton & CPS, 2011).
Exploring the Gaps in the PCP Role
Despite guidelines being in place, there continues to be delay in obtaining ASD diagnosis
for younger children in both urban and rural settings (Penner, Anagnostou & Ungar, 2018). The
rationale for delays, difficulties, and barriers to care are complex and are highlighted in Table 1.

18

Table 1
PCP causes for delay
• PCPs not feeling confident in voicing concerns about a child suspected of ASD to
parents, which results in delayed referral (Unigwe et al., 2017).
• High healthcare environment contact can result in difficulties in the relationship
between PCP and parent (Bultas, Johnson & Reinhold, 2015).
• PCPs reporting feelings of discomfort and unfamiliarity with the complexity of referral
process (Anagnostou et al., 2014, Figure 1).
• Hesitancy to refer due to the long waitlists, which result in cumulative delay; in BC, the
waitlist for evaluation is up to 54 weeks (PHSA, July 2018).
• Anxiety linked to understanding how to support young children and their parents during
the ‘waiting phase’ for assessment and diagnosis. (Unigwe et al., 2017)
• Limited community resources, uncertainty linked to the quality of local, provincial and
wider support networks (Unigwe et al., 2017).
• Other organizational factors (Penner, Anagnostou & Ungar, 2018).

In summary, available guidelines clearly describe the PCP role in surveillance, screening,
and referral (Dua 2003; MCFD, 2017; CTFPS, 2016; Penner, Anagnostou & Ungar, 2018);
however, the difficulty for the PCP lies in how to support young children and their families while
awaiting diagnosis, and during the initial phase of a new diagnosis, when parents are still
inexperienced, and the risk of delayed assessment and intervention is high. There remains little
information, vague instruction, and contradictory advice for the PCP in this role (Mulligan et al.,
2012). Considering the emotional turmoil that parents face during this time period, it is
imperative that PCPs have a better understanding of their role and strategies that may support
parents during this time period. Therefore, establishing a healthy relationship with parents early
in the process of ASD diagnosis can positively benefit the child’s future care and quality of life
(Carbone et al., 2010).
Patient and Family Centered Care
A knowledge gap of how primary care providers can support the parents of children
awaiting a diagnosis of ASD exists. How the PCP establishes a partnership with parents at this

19

time of uncertainty can significantly impact future parent empowerment. An example of a health
care model which can help to build a collaborative partnership between healthcare providers and
parents of younger children with ASD is patient and family centred-care (PFCC) (Christon et al.,
2015). PFCC2 is described as a model of health care service delivery, grounded in a collaborative
partnership between the family, patient, and provider (Arango, 2011). It is based on respect for
family, and uses open, honest communication (Pelzang, 2010). The overarching objectives
behind PFCC are to co-create a foundation of understanding, reciprocity, and engagement in all
aspects of planning and providing safe informed care with children and their families. This
collaborative model values respecting the strengths and abilities that each member brings to the
relationship and encourages active participation in timely information sharing between the
provider and family, to promote informed decision-making (Arango, 2011). For the purpose of
this review, the principles of PFCC are adapted by Pelzang’s (2010) model and are described in
further detail in Table 4 (pg. 55).
Antecedents of PFCC include the willingness to be involved in client care from both the
family and the provider (Hutchfield, 1999). In addition, PFCC requires adequate time to provide
quality care; for example, creating time within an appointment for the provider to explain health
conditions, and to listen effectively to family concerns (Hutchfield, 1999). Providing care
through a PFCC lens offers positive outcomes for families with children suspected of ASD
(Hutchfield, 1999). As previously noted, obtaining a diagnosis of ASD for a child is a very
stressful experience (Bloch & Gardner, 2007; Hennel et al., 2016; Mulligan et al., 2012). Use of a
PFCC model can help to address stressors by exploring and demonstrating empathy, and enabling
communication in support of parents and their younger children. Parents of children with ASD
2

For the context of this paper Patient and family centred care will be used to offer clarity. While discussion in the
literature focuses on the merits of PFCC, FCC and CCC (child centred care), a detailed review of the theoretical
positioning is outside the scope of this paper.

20

experience caregiver burnout, struggling with the decision-making and coordination involved in
their child’s care (Bloch & Gardner, 2007). At times, many parents describe frustration with
complex health care systems, limited resource availability and location of services, and
inconsistent information delivery (Carbone et al., 2010). The systematic approach that PFCC
provides can address these challenges by building and sustaining stronger parent-PCP alliances,
which enhance parent empowerment (Zajicek-Farber et al., 2015). The stresses that parents
experience decreases as “family centered services improve resilience of families of children with
autism” (Carbone et al., 2010, p.). Parents decision-making and decision-taking behaviours
linked to intervention choice for their child can help to reduce stress. The PCP has a role in
supporting parental decision-making by providing timely, transparent information to parents
(Zajicek-Farber et al., 2015). However, for a PFCC approach to be successful it is important that
both the parent and provider have a basic understanding of their respective roles in care (Pelzang,
2010). By aligning the perspectives of the PCP and parents, PFCC can increase the efficacy of
professional time, improve family’s overall satisfaction with care provided to their child, and can
improve family functioning by strengthening protective factors (Zajicek-Farber et al., 2015).
Despite the benefits of patient centred models for PCP use with younger children
suspected of ASD, there remains limited evidence of the translation of knowledge to practice.
Regardless of model or framework, PCP strategies such as shared-decision making, supporting
consistent approaches to management, and removing barriers to care, must be considered further
in order to deliver quality care with younger children suspected with ASD. The PCP needs to
have knowledge, skills, and be adept in their clinical judgement. When parents are in an
anticipatory stage following identification of suspected ASD and newly confirmed diagnosis,
PCPs are ideally positioned to support and guide these parents, while establishing rapport,
affirming respect and dignity, and facilitating collaborative care for the child and family. As a
21

result of reviewing the general literature linked to the challenges linked to understanding the PCP
role in early childhood ASD, the following question was formulated within the context of this
literature review: “What are primary care strategies for supporting the parent(s) of children aged
18-36 months with suspected ASD?” The following chapter will discuss the literature search
methods used to explore this question. The following methods chapter will examine in detail the
approach adopted to explore the topic area in greater depth.

22

CHAPTER TWO: METHODS
This chapter will discuss the literature search strategies used to select the final articles
chosen for analysis. The purpose of this integrative review was to examine the primary care
provider role (PCP) in supporting parents with young children suspected of ASD. The question
that was formulated in order to answer this question was “What are primary care strategies for
supporting the parent(s) of children aged 18-36 months with suspected ASD?” In order to explore
this topic area, a review of the current literature was warranted. Since various methodological
approaches have been used to explore these phenomena, an integrative literature review
methodology was chosen, as this approach synthesizes literature from various research
methodologies (Whittemore & Knafl, 2005). Study methods may include quantitative, qualitative
and mixed methods (Whittemore & Knafl, 2005). The purpose of an integrative review is to
provide a more comprehensive examination of the “phenomenon of concern”, as it includes a
variety of perspectives, concepts, theories and evidence that can more accurately portray the
complexity of an issue (Whittemore & Knafl, 2005, p.547). Multiple approaches have been
developed to guide the process of an integrative review, however the framework provided by
Whittemore and Knafl (2005) is used to guide this review. Preceding chapters in this review have
outlined the complexity of issues faced by both primary care providers and parents when ASD is
suspected or newly diagnosed in a young child resulting in a focused question. This chapter will
provide a comprehensive explanation of the methodology used in the literature search stage to
acquire the articles for data analysis. As described by Whittemore and Knafl (2005), the literature
search stage is led by a comprehensive examination of the themes that exist within the research
question. The subsequent chapters will then address the next stages of the integrative review.
“Chapter 3: Findings” will detail a data analysis of the chosen articles; “Chapter 4: Discussion”
will provide an overall presentation of the data analysis, and “Chapter 5: Recommendations” will
23

provide detailed recommendations for practice, based on themes and discussion acquired with the
data and its analysis.
Inclusion and Exclusion Criteria
Inclusion and exclusion criteria were created to provide a focused literature search. These
criteria were created to include publications related to themes within the review question, such as
targeted population age and health care setting, while excluding publications that were unlikely to
provide relevant information related to this review’s question. Sources from a 12-year period i.e.
published from 2005 to 2017, were included for review. These dates were chosen to keep content
relevant, while also capturing a sufficient breadth of material; moreover, increased interest in
ASD research in the early 2000s is demonstrated in the increased quantity of research
publications available after 2005 (Interagency Autism Coordinating Committee, 2012). Sources
needed to be written in English, from America, Western Europe, and Australia. The rationale for
English as the dominant language is that populations in these countries share similar health care
culture and social demographics with Canada. All study populations with children between the
ages of 18 to 36 months were included, as these ages reflect when ASD is earliest and most
commonly suspected. Studies completed in acute or specialized care settings were excluded, as
findings within these settings were less likely to apply to the primary care provider. Studies that
focused on screening tools, school-related issues, ASD comorbidities or medical care were also
excluded, as their studies were too broad for the scope of this review. Table 2 summarizes the
inclusion and exclusion criteria of the literature search.

24

Table 2
Inclusion and Exclusion Criteria
Inclusion Criteria
Exclusion Criteria
Written after 2005
Written before 2005

Rationale
Keeps content relevant

In English or translated to
English
From North America, western
Europe or Australia

In other languages

Able to understand

From other countries

Countries with similar health
care culture

Published in academic
journals, peer reviewed or
dissertations

Editorials, opinion pieces,
unpublished, magazines

Sources are of evidence based
research
Variety of evidence based
research; covers multiple
aspects of research topic

Inclusive of systematic
reviews, integrative/literature
reviews, quantitative and
qualitative
Relevant abstract and title

Irrelevant abstract and title

Topic relevance

Age: 18-36 months

Age: less than 18 months,
older than 36 months

Recognition, assessment,
referral and diagnosis typically
happen around age of 2; very
limited evidence available on
younger than 18months

Primary care setting

Acute care setting

Focus is in primary care

Nurse practitioners, family
physicians, primary care
paediatricians

Acute care providers;
educators/teachers, speech
therapy, nurses

Health care focus: Any PCP
practice is relevant to the FNP
role

Autism Spectrum Disorder,
Asperger’s

Cerebral palsy, FAS

May change based on research
availability?

Studies focused on role in
referral, screening, diagnosis,
red flags, suspected ASD,
early management

Methods of treatment
(screening tools), comorbidities (insomnia, GI
issues, ADHD), medical care
for ASD children, schoolrelated issues

Focus is on suspicion,
recognition, assessment and
referral

25

Preliminary and Secondary Search
A preliminary search was conducted in September 2017 to provide a better understanding
of the key words and ideas within the research question. Using a concept map, relevant ideas and
terms were developed into keywords (see Appendix B). Keywords were then used within the
selected search engines (see Appendix C). Final subject headings were chosen based on
suggested MeSH terms that represented the themes of the research question. These databases
organize sources based on these subject headings, subheadings and publication types; therefore,
using these terms was more likely to generate a higher yield of relevant literature. The terms were
searched in each database in a series of combinations using the Boolean operators “AND” and
“OR”. A summary of the key word search terms and Boolean combinations used are summarized
in Table 3 and Appendix C, respectively.
Table 3
Search Terms: Major Concepts, Mesh Terms and Subject Headings
Autism
Provider or
Parent
Primary Care
Setting
Strategies
Autism
Primary care
Parent
Screening
Spectrum
Disorder
Nurse
Caregiver
Surveillance
practitioner
Autism
Family
Referral
Family
Autistic
physician
Diagnosis
Disorder
Pediatrician
Intervention

Databases
PsycInfo
Medline
CINAHL

Professionalfamily relations
Electronic databases selected from the University of Northern British Columbia library
included: CINAHL, Medline, and PsycInfo. These databases were chosen because they were
most likely to have content related to primary care, health care, and developmental health. The
preliminary search from these databases yielded 240 results. The results were then hand26

searched. Five articles were chosen after applying inclusion and exclusion criteria and based on
relevancy to the research question.
Following the preliminary search, eight additional search terms were added, to focus on
the relationship between the parent and provider (see Appendix C for all search terms and
combinations). Search terms related to screening and surveillance was removed. Following the
same strategy detailed in the preliminary search, the databases yielded 454 results. After applying
inclusion and exclusion criteria and hand-searching titles and abstracts for relevancy, another five
articles were chosen for analysis. Figure 1 illustrates the full search in a flow diagram. References
of the final ten articles were also examined. Three additional articles fulfilled the criteria review;
however, after more detailed review, these three articles were excluded from final analysis and
were used for providing supporting background information only. Therefore a total of ten articles
were included for this review.
Figure 1.
Search Results

27

Grey Literature and Supporting Literature
Cochrane, Clearinghouse, and Joanna Briggs electronic databases were searched within
the same timeframe between November and December 2017, using only the search term “autism
spectrum disorder”. From these databases, only two guidelines were found that related to the
population or themes of the research question (Canadian Task Force on Preventive Services
[CTFPS], 2016; National Institute for Health and Care Excellence [NICE], 2017). Although these
guidelines are used as supportive literature, they were not included in the total findings, as their
information was too vague to apply to the primary care role. Additional grey literature and
supportive literature were collected through a variety of databases including Google Scholar, and
the Autism Community Training (ACT) Database. Finally, thesis completed by graduate students
were found in the Open Access Theses and Dissertations (OATD) database, and were used as
supporting references.
Data Analysis
After the review, the final sample included five (50%) qualitative studies, four (40%)
quantitative studies and one (10%) mixed-methods survey. The articles were read and analyzed
using a systematic tool, Critical Appraisal Skills Programme (see Appendix D) (February 2018).
This tool, when applied, supports the reviewer to summarize each study, measure study quality
and bias, consider overall relevance to the question, and identify recommended implications for
practice. Although several studies contained bias in their method of study (i.e. parent interviews),
all article data contributed equally to analysis, as personal experiences still provided applicable
implications to PCP practice. Once the articles were measured for their quality and relevance,
data extraction from the publications were added to a literature matrix (see Appendix E).
Categories within the literature matrix included author and title, study design and summary, key

28

recommendations and implications to practice, and study gaps/limitations. Within
recommendations and implications, definitions, antecedents, consequences and facilitators of
parent-PCP relationships were considered. Once the matrix was completed, related terms in the
matrix were extracted and grouped into common themes. For example, terms such as listening,
approaching difficult topics, and emotional support were concepts grouped under the overarching
theme of “communication”. These themes were then reviewed with each primary source to
ensure congruency. Throughout the data analysis, the Patient Family Centred Care (PFCC) model
was identified as a conceptual framework that provided a logical structure for the themes to relate
to one another, while also specifying concepts that addressed this review’s question. A
conceptual framework is “a structure of what has been learned to best explain the natural
progression of a phenomenon that is being studied” (Grant & Osanloo, 2014, pg. 17). The themes
were organized within the PFCC framework to better understand the relationships between the
connected concepts. These themes will be explored within the PFCC framework in the following
Chapter; Findings. The themes, and their implications on future practice, will be further explored
in relation to each other through epistemological and ontological worldview perspectives in the
final Chapter; Discussion (Grant & Osanloo, 2014).

29

CHAPTER THREE: FINDINGS
This integrative review examines the primary care provider role in supporting parents
with young children suspected of ASD, using the formulated question: “What are primary care
strategies for supporting the parent(s) of children aged 18-36 months with suspected ASD?” The
previous chapter outlined the search process and data analysis used to answer this question. Once
a search and review of the literature was completed, the common themes of the chosen studies
were examined at a latent level (i.e. identifying underlying patterns, ideas, and assumptions
(Braun & Clarke, 2006). This chapter will report the findings from the analysis of the themes and
subthemes, including an examination of the underlying ideas, assumptions and concepts of each
theme identified.
Ten articles fulfilled the criteria from the literature search to answer the research question.
Appendix E provides a literature matrix that details the methodology, sample size, quality, key
findings, gaps and limitations of each article. The literature eligible after review, synthesis and
analysis included five (50%) qualitative studies (Bloch and Gardner, 2007; Carbone, Behl,
Murphy and Azor, 2010; Hennel et al., 2016; Mulligan et al., 2012; Rhoades, Scarpa and Salley,
2007), four (40%) quantitative studies (Barbaro and Dissanayake, 2010; Carbone, Norlin and
Young, 2016; Feinberg et al., 2016; Monteiro et al., 2015) and one (10%) mixed-methods study
(Garg et al., 2014). All of the qualitative studies retrospectively interviewed parents on their
experiences with primary care providers (PCPs) during their child’s ASD diagnosis. The
quantitative studies explored the benefits of additional ASD training for PCPs, as well as
surveillance and routine monitoring for children suspected of ASD. The mixed-methods survey
explored education for PCPs on ASD identification. Three studies were conducted in Australia
(Barbaro and Dissanayake, 2010; Garg et al., 2014; Hennel et al., 2016), one study was
conducted in Canada (Monteiro et al., 2015), and six studies were conducted in the USA (Bloch
30

and Gardner, 2007; Carbone, Behl, Murphy and Azor, 2010; Carbone, Norlin and Young, 2016;
Feinberg et al., 2016; Mulligan et al., 2012; Rhoades, Scarpa and Salley, 2007).
As a result of following the thematic analysis approach outlined in Chapter two, two
overarching themes were identified from the literature, and will be reported in this chapter (Braun
& Clarke, 2006). The overarching themes and supporting subthemes are as follows:
a) Primary Care Provider Knowledge – three subthemes within this theme include
acquiring information, personal factors, and team/model of care factors; at times, these subthemes
may appear to overlap, however each subtheme brings a key element to supporting the
complexity and significance of PCP knowledge as an overarching theme.
and
b) Communication – the concept communication is very broad; however, specific aspects
surrounding communication were identified in the literature. Therefore, features of the theme are
focused into four subthemes, including: Information sharing, listening, repeated interactions, and
approaching difficult subjects.
Primary Care Provider Knowledge
To provide an overview of the theme PCP knowledge, there were various complexities
and patterns that emerged on analysing the literature. Increasing PCP knowledge was the
dominant focus across all studies as linked to various aspects of knowledge acquisition or
enhancement. In the first subtheme, acquiring information, Bloch and Gardner (2007) and
Carbone et al. (2010) identify the need for general early childhood development knowledge,
through empirical training and education, in order to improve timely access to ASD diagnosis.
Both Bloch & Gardner (2007) and Carbone et al., (2010) recognise the value of time needed for
the PCP to learn about ASD presentation and management. However, for the PCP, time can be

31

limited, as a result of health care demands, yet it must be factored in organizationally when
caring for children with suspected ASD to inform efficient, effective decision-making. In the
second subtheme, personal factors, multiple studies identified personal factors of the PCP that
contributed to increasing knowledge about ASD and its management. Personal factors include the
PCP’s willingness to learn and participate, and the impacts of their perceived self-efficacy on the
child’s continuity of care and the parents’ perceptions of care (Carbone et al., 2010; Carbone
Norlin & Young, 2016; Garg et al., 2014; Monteiro et al., 2015). In the final subtheme,
team/model of care factors, Barbaro and Dissanayake (2010) and Feinberg et al. (2016) identify
the value of increasing knowledge across the multidisciplinary team, within a health care model
that provides focused training and better role clarity.
Acquiring information. Bloch and Gardner’s (2007) exploratory survey primarily
explored the parent burden experience. Their findings drew attention to the role PCP education
had in facilitating parental caregiving capacity. Six mothers, recruited through purposive
sampling, were informally interviewed and audiotaped, which was then analyzed with
comparative analysis and triangulation. The authors found that parents believed that PCPs needed
a general knowledge base about ASD in order to proactively guide clinical encounters and gather
appropriate information resulting in timely referral and diagnosis (Bloch & Gardner, 2007).
Parents reported that PCPs were not likely to have a comprehensive understanding of ASD
deficits, and that “most of the practitioners gave advice that demonstrated little comprehension of
the real problems faced by parents of a child with ASD” (Bloch & Gardner, 2007, p. 14). In
addition to a PCP knowledge deficit of problems that parents may face, parents also pointed out
that short appointment times limited the PCP’s ability to acquire an in-depth understanding of the
child, as well as missed opportunities to explain or teach child development check ups to parents.
Such patterns of time limiting behaviours resulted in parents feeling rebuffed, as one mother
32

stated “Healthcare practitioners have limited contact time with the child. They don’t understand
the subtleties of why things are difficult.” (Bloch & Gardner, 2007, p.13). This study provided an
important opportunity to advance understanding of the impact PCP education has on facilitating
and encouraging parent’s engagement in consultations. The PCP is required to have a basic
knowledge of ASD as well as detailed knowledge of normal developmental stages. Being able to
draw these two aspects together in short appointment times can help parents to articulate
developmental concerns about their child (Bloch & Gardner, 2007). PCP opportunities to attend
quality training that promotes enhanced learning about ASD can result in heightened
observational skills. Such skills can then be translated to clinical practice so that the PCP can
make better use of the limited timeframe available during appointments spent with a child
suspected of ASD (Bloch & Gardner, 2007).
Carbone, Behl, Azor and Murphy’s (2010) used two separate focus groups to interview
five parents and nine primary care providers to elicit their perspectives of how medical home
setting are environments which can identify the unmet needs of a child with ASD. This
qualitative study used an exploratory analysis. Similar to Bloch and Gardner (2007), this study
highlighted that gaps in PCP knowledge impacted on ASD care. By missing opportunities to
explore developmental concerns, indicate a need for service, or enhance parental knowledge, the
PCP limited parent-PCP relational opportunities. In addition, Carbone et al. (2010) identified the
responsibility of the PCP to have both insight and an understanding of how these factors
influenced outcomes for the child and family. Furthermore, PCPs have a duty to parents to help
them navigate access to local community services and resources available to the child and
caregivers. Considering the study in a little more detail, Carbone et al. (2010) used purposive
sampling to recruit five parents with children ranging from ages 2 to 14 from a school specialized
in ASD. In parallel, the study team recruited nine providers from primary care clinics throughout
33

a metropolitan area in Utah. Although the providers in this study were paediatricians, their
experiences can still be reflected in family PCP experiences3. Across both author-facilitated
focus groups, participants were asked to answer open-ended questions concerning the role of the
medical home in ASD care (Carbone et al., 2010). The small population and retrospective nature
of the study provides limitations in applicability and bias, however their findings corroborate
with other studies in similar population groups, and the information remains relevant to this
review’s topic of interest regarding provider and parent relationships.
Parents and providers both described the importance of the provider’s general ASD
knowledge and ability to discuss caregiver stress and complementary alternative medicine
(CAM) treatments (Carbone et al., 2010). Some parents reflected on their experiences with their
providers reporting that provider knowledge of child development, surveillance, and ASD
screening tools, was foundational when setting up initial interactions with them. Such patterns of
behaviour from the PCP, as an information resource and partner in their child’s care, influenced
how these parents perceived and trusted the information their PCP shared. These initial
interactions reflected a deeper and sustainable level of parent trust in their provider, an integral
aspect for providing future support and care (Carbone et al., 2010).
However, throughout the interviews with parents and providers both groups recognized
provider knowledge gaps; for example, the providers identified their lack of awareness in
evidence-based and complementary-alternative medicine (CAM) intervention options (Carbone
et al., 2010). The study demonstrated when providers failed to develop a clear and comprehensive
knowledge base, this resulted in a delay in ASD assessment, screening and diagnosis. As such,
delays left caregivers frustrated and disempowered, leading to a loss of trust and confidence for
3

Pediatricians working within a medical care home context draw similarities to PCP settings within Canada,
specifically within rural and primary care settings. Therefore while geographically different, the model of care used
in this study has resonance within a PCP context and BC practice.

34

some parents in their provider. This was evidenced when caregivers reported switching providers,
or expressed feelings of “lowered expectations” of their providers (Carbone et al., 2010, p.320).
Such assumptions made by parents are difficult for providers to recognize and also recover from,
since the risk in provider swapping does not eliminate the difficulties parents are likely to
experience. There is no guarantee that new providers would have a greater knowledge unless they
identify as having received additional education and training. As viewed through a wider lens, the
need for providers to both access training and embed knowledge is critical if they are to promote
provider-parent collaboration and communicate information well in ASD care with families.
In addition to the biomedical aspects of ASD, Carbone et al. (2010) identified providers
needed to have an understanding of the social and political atmosphere in the community; this
included recognition of allied health care providers, community resources or lack thereof, and
specialists (Carbone et al, 2010). In their study, providers had little to no communication with the
wider interdisciplinary team supporting children with ASD. Although not explicitly reported in
the findings of this study, their limited knowledge of community resources highlighted an
absence of an effective model of care as a result of a lack of information. Effectively applied
models of care encourage the collaboration of multiple disciplines, recognizing the strengths of
community partnerships, and how working together can improve services when gaps in care are
identified. For example, all of the providers reported attempting to connect parents with
community services, yet a lack of community information resulted in providers struggling with
care coordination (Carbone et al., 2010). The PCPs interviewed by Carbone et al.’s (2010)
described challenges obtaining community resource information, possibly linked to time,
concluding that the parents were often more knowledgeable about ASD services than providers
themselves. For example, one provider clearly reported “most families know more than I know
about the resources in the state” (Carbone et al., 2010, p.320). The providers described their lack
35

of knowledge about community resources as a barrier in supporting children with ASD and their
parents (Carbone et al., 2010). Such barriers can also result in a challenge to the confidence of
providers. The historical power differential between health providers and care recipients has
relied on providers to be the gateway to specialist referral as well as the knowledge broker
(Forrest, 2003). This is significantly challenged when parents have a deeper knowledge than
health care providers, and can challenge the partnership dynamic; however, it can also motivate
PCPs to seek and acquire information proactively to enhance their skills when working with this
patient population.
Providers were not without ‘good ideas’ about how to address their information deficits.
An example was to propose the development of a local web-based resource to improve provider
information and knowledge. However, the providers did not offer who would create this resource,
or how it could be kept current which poses as a barrier to its development and sustainability long
term (Carbone et al., 2010). The suggestions offered by the providers highlighted their
reservations linked to investing time in learning more about this population, likely linked to
personal factors, which is considered in the next subtheme. Additionally, these findings
demonstrate a lack of leadership in creating resources, which may be a pattern of behaviour noted
across many organizations, when time and cost are limited.
A significant strength of this study is in its parallel interviews with providers and parents
(Carbone et al., 2010). The providers reported multiple knowledge gaps about ASD. When
contrasted with the parents’ experiences, it highlighted how the knowledge gaps affected not only
the child’s unmet needs, but also the parent perceptions in provider’s competence. Although both
Bloch and Gardner (2007) and Carbone et al. (2010) explore themes of educational needs for
PCPs, both of the studies remain limited in that they do not discuss at what point in a PCP’s
career the training might occur, or how PCPs could remain informed of current ASD
36

nomenclature. When considering other implications, their findings propose that an absence of
leadership in creating or acquiring resources on ASD affects PCPs and other health care
providers, who may also find such resource availability beneficial in their own practice.
Personal factors. Personal attributes of the PCP can impact their knowledge base, and
their ability to share information with parents. Garg et al.’s (2014) study support PCP education
that extends beyond general knowledge of ASD features. In their mixed-methods study, the
authors explored subjective and objective knowledge of PCPs (n=152) in New South Wales,
Australia. The study employed a true/false survey on ASD, as well as narrative reporting to
measure the relevance, perceptions and self-perceived educational needs for PCPs linked to ASD
(Garg et al., 2014). Although a true/false survey provides low sensitivity and specificity, the
information collected remains valuable, since it originated from the perspective of PCPs (Garg et
al., 2014). The population for the survey was acquired on a voluntary basis, and while it received
an overall low response rate in relation to the numbers of possible providers, over 100
participants warrants inclusion of the data in this review. Of note, female PCPs and PCPs with an
interest in mental and or child health were more likely to respond to the survey (Garg et al.,
2014). When comparing the results of the population demographics and accuracy of the true/false
survey, knowledge of ASD was inversely related with the PCPs age and number of years in
practice and was enhanced by personal involvement with children with ASD or awareness of
community resources (Garg et al., 2014).
According to Garg et al., (2014), specialty resource and community resource awareness
improved provider confidence and the overall ASD referral process. PCPs identified their
educational needs included understanding their role within the multidisciplinary team, as well as
knowledge of available community resources, reporting that increased awareness of community
resources was “positively associated with self-perceived competence in developmental disorders”
37

(Garg et al., 2014, p.7). Across the data, a pattern emerged that demonstrated PCP self-interest
and motivation as key facets that drove information seeking behaviours. For example, PCPs often
drew on personal experiences, and identified key needs: “[I] need to know at a very basic level,
recognition and referral pathways locally” (Garg et al., 2014, p.6). As such, Garg et al.’s (2014)
study is a good example of the importance of self-awareness of knowledge gaps. PCPs have a
responsibility in line with professional standards to be able to recognise their limitations and
examine how to meet continuing education needs. Education is not solely focused on clinical
aspects of care but must consider an appreciation of how to navigate community pathways and
local nuisances to improve patient access. Working in teams is an important way in which PCPs
can facilitate shared learning, and enhance their skill set while challenging thinking, which in
turn helps providers recognise their knowledge gaps (Garg et al., 2014).
Garg et al.’s (2014) study also identified the settings and situations where by PCPs obtain
their ASD training and information. PCPs reported varying sources of knowledge, including
personal interactions with ASD patients, specialists and allied HCPs; self-directed reading on
ASD; paediatric specific educational programs; and local community intervention programs and
websites (Garg et al., 2014). This study’s findings provide a new perspective when considering
PCP knowledge; namely, Garg et al.’s (2014) findings “tak[e] into account GPs own beliefs,
relevance and interest in these disorders” (Garg et al., 2014, p.7). It is evident in the findings that
“an increased ‘interest and concern’ of practitioner accounted for a large proportion of variance
in their ability to identify psychiatric illness” (Garg et al., 2014, p.7) which reiterates the need for
the PCP to be self-directed and responsible in attaining, and subsequently maintaining, an ASD
skill set. The PCP role in ASD care is therefore, in part, self-driven, and includes the personal
facets as well as the need to find both time and resource to attend ASD training (Garg et al.,
2014). Similarly to Carbone et al.’s (2010) study, experience matters, since this increases
38

confidence and provides opportunity for PCPs to learn from prior experiences through reflection.
However, this also helps the PCP recognise their limitations, which is a critical aspect of
reflection; for example, in Carbone et al.’s (2010) study, a provider states that “I can’t see one
autistic kid for hour and a half – I don’t have enough patience” (p. 319). These remarks highlight
that providers, even when willing, may not have the personal capacity to engage at the levels
required, and therefore must know when, and how, to seek help in order to provide quality care.
Results from the survey by Garg et al. (2014) also demonstrated that part of the PCP’s
knowledge was inversely related to length of time and history of experience in clinical practice.
The idea that longevity in a practice setting and local population needs can enhance skills when
managing commonly seen health conditions is not new (Benner, 1982). When clinical
experiences are uncommon in practice, there is a risk in losing the knowledge and skillset
required to identify atypical behaviours or concerns brought forward by parents (Garg et al.,
2014). Such findings are of note, since for PCPs to be able to become and remain knowledgeable
about early childhood ASD, how this happens in clinical practices must be considered,
particularly where populations of children are low, or where PCP burnout risk is present.
Carbone, Norlin and Young’s (2016) intervention study demonstrates the benefits of PCP
education on enhancing PCP self-efficacy which in turn enhances the PCP’s capacity and
capability, i.e. their knowledge and performance in ASD screening, referral, and early
management. Self-efficacy is described as one’s belief in their skills or ability to carry out
specific tasks (Bandura, 1977). In their cohort study, n=43 PCPs from across 26 practices, spread
across the Utah state, initially reported low levels of self-efficacy in their ability to provide
adequate care for individuals with ASD (Carbone, Norlin & Young, 2016). The authors found
that both in-person and three to six month webinar training provided to PCPs by a paediatricianuniversity partnership initiative increased the frequency of screening, and also improved PCP
39

perceived self-efficacy in delivering ASD care (Carbone, Norlin & Young, 2016). The authors
measured the PCPs self-efficacy through pre and post-surveys of perceived knowledge on ASD.
Carbone et al.’s (2010) findings demonstrated that improved self-efficacy fostered PCPs selfreported ability to address developmental and behavioural concerns in children presenting with
suspected ASD. This pattern of improved self-efficacy influenced other significant areas, such as:
appropriate referrals, parent guidance, and support in primary care settings during ASD
treatment. While Carbone, Norlin and Young (2016) were not able to determine if the detection
of ASD improved via universal screening approaches, this has relevance in Canadian clinical
practice. Since the Canadian Task Force on Preventive Services (CTFPS, 2016) does not
recommend that health care providers provide universal screening for ASD at any age, the key,
for PCPs, is to identify those at risk earlier, and to complete appropriate ASD screening. The
long-term benefits for ASD training and education illuminates that investment in education,
coupled with motivation to learn, has a lasting impact on knowledge retention and recall. As
demonstrated in Carbone, Norlin and Young’s (2016) study, these factors impacted the care the
PCPs provided, i.e. their practice and education on ASD continued to provide increased rates of
screening.
Two further studies highlighted how the PCP’s self-perceived confidence or self-efficacy
in their knowledge on ASD influenced decision-making and enhanced communication capability
(Carbone et al., 2010; Garg et al., 2014). While Garg et al. (2014) found that self-perceived
confidence correlated with better knowledge of ASD, Carbone et al. (2010) found that the low or
diminished confidence internalized by the PCP influenced their behaviours. PCPs did not prompt
questions that may help them to recognise red flags in consultations with parents (Carbone et al.,
2010). Comparing these findings demonstrates how the impact of low confidence levels, even

40

with good knowledge level, results in children with ASD experiencing delayed diagnosis and
access to treatment.
Re-framing this through a positive lens to demonstrate how knowledge improved
confidence and outcome, Monteiro et al. (2015) present a retrospective chart review that suggests
the positive effects of PCP ASD knowledge. Their study aimed to determine if children received
ASD intervention prior to a diagnosis (Monteiro et al., 2015). The children were all under the age
of five, with a mean age of 44 months at the time of diagnosis (Monteiro et al., 2015). Out of
n=561 children referred to the clinic, 64% received an ASD diagnosis, and all except 5 patients
received a diagnosis involving a behavioural or developmental delay including ASD (Monteiro et
al., 2015). Interestingly, 89% of patients were already receiving behavioural intervention prior to
a diagnosis; this contradicted previous evidence suggesting delayed intervention as a
consequence of delayed diagnosis, and highlighted that formal diagnosis is not necessary to
initiate intervention. Due to the retrospective aspect of the study, it was difficult to determine
why or how these children were able to receive early intervention (Monteiro et al., 2015).
Speculating from the study characteristics, it is feasible that the written information
provided in the study empowered parents and improved PCP confidence to start or find early
intervention opportunities (Monteiro et al., 2015). Monteiro et al.’s (2015) findings suggest that
PCPs who are more informed about ASD are “less hesitant to ... refer to early intervention and
therapeutic services while their patients are awaiting diagnostic evaluation” (p. 17). Although the
findings of this study are limited due to its retrospective nature, surrounding literature supports
the authors’ findings that PCP knowledge improves confidence in referral, and facilitates parents
to seek out interventions while awaiting diagnosis (Carbone, Norlin & Young, 2016; Garg et al.,
2014; Mulligan et al., 2012).

41

Team and model of care factors. Barbaro and Dissanayake (2010) provide the only
prospective study from the literature search. Their study provided ASD training using a
developmental surveillance approach focusing on social and communication behaviours at ages
8, 12, and 24 months, to n=241 public health nurses (PHNs). These nurses were already familiar
with expected childhood developmental stages since they often undertook general developmental
surveillance with children in their clinics (Barbaro & Dissanayake, 2010). Training on early
developmental milestones related to ASD was delivered and then applied to their routine
surveillance, screening and assessment charting. Children could be directly referred to a
specialized Social Attention and Communication team for comprehensive ASD assessment by
the PHN if a child was deemed at-risk, with atypical signs of development after 12 months of age
(Barbaro & Dissanayake, 2010). Compared to the average number of children with ASD to the
general population, more children were referred and diagnosed with ASD, demonstrating
improved rates of identification and referral as a result of education on early identification signs
of ASD (Barbaro & Dissanayake, 2010). The authors of the study followed up on the sample
population in 2017 and reported that the children referred at an early age either retained an ASD
diagnosis, or continued to demonstrate delays in social and communication abilities (Barbaro &
Dissanayake, 2017).
The true sensitivity and specificity of the tool used in the study could not be calculated
because the entire cohort was not followed, however it was estimated as 84% and 99%,
respectively (Barbaro & Dissanayake, 2010). Although this study specifically focused on the
validity of a prospective tool in screening for children with ASD, it brings forth questions
regarding its overall value in consideration of time, cost and education requirements for
implementation, as well as its relevance to the PCP role when identifying younger children with
suspected ASD. Findings of the study demonstrate that the focused education on early age
42

development appeared to enhance knowledge in PHNs over the course of the study. Based on
these results, the enhanced knowledge acquired through the added time, cost and education on
early child development, surveillance tools and screening can assist the PCP role when
identifying younger children with suspected ASD (Barbaro & Dissanayake, 2010).
Of note, the referral process in many countries, including Canada, is medically directed,
which means via a PCP. In Barbaro and Dissanayake’s (2010) study, nurses were able to directly
refer children for an ASD assessment. Within BC, only a PCP or specialist (i.e. pediatrician) can
refer a child for an ASD assessment (PHSA, 2018). Therefore, within the BC health care system,
it would be necessary to have interprofessional collaboration between PCPs and PHNs visits. In
light of the findings, the education to enhance knowledge across and between those working in
primary care settings (PCP and PHN) is key to strengthening knowledge and opening dialogue
between such partners, should they be working in teams, which results in timely referral for
younger children with ASD.
Feinberg et al.’s (2016) pilot randomized control trial (RCT) examined if “family
navigation” (FN) could improve timeliness to ASD diagnosis (p. 913). Through a sample of 39
families, Feinberg et al.’s (2016) pilot RCT compared families (n=20) who received FN with a
control group receiving usual care (n=19). Participants in the study were chosen based on criteria
that increased likelihood of an assessment delay which included the following factors; living
below the poverty line, coming from a racial or ethnic minority group, and/or having mothers less
than 24 years old (Feinberg et al., 2016). The study demonstrated that nineteen out of twenty
families provided with FN received an assessment within a year, versus the control group where
eleven out of nineteen families received an assessment within the same timeframe (Feinberg et
al., 2016).

43

Patient, or family, navigation (FN) is a health care model based on principles of costeffective patient-centred care (Freeman, 2013). Its core function is to have a navigator, other than
the provider, with a defined role to eliminate barriers to care for the child and family (Freeman,
2013). In Feinberg et al.’s (2016) study, the navigator role included working with the family of a
child referred for an ASD assessment, by providing explanations of the referral, assessment
process, and documentation requirements, as well as ensuring family understanding for the
reason for referral and assessment. These goals were achieved over an average of four
appointments between the navigator and family leading up to the child’s ASD assessment
(Feinberg et al., 2016). The navigators in the study were bilingual, and received training on
“navigation competencies, completing an online course...on Autism Spectrum Disorder, and
observing three ASD diagnostic assessment” (p. 913). One of the principles of family navigation
is that the navigator is an individual other than the PCP (Freeman 2013). However, in situations
where there is no additional navigational support, additional PCP training on ASD and the
referral process may be a cost-effective option to enable the PCP within their existing portfolio to
support family navigation, from the time of referral to the assessment. Feinberg et al.’s (2016)
findings support the positive impact of additional training for the PCP and the multidisciplinary
team. Their study highlights the benefits of additional training when it is provided through a
specific model of care, which results in the delivery of focused information and clear role
identification. Therefore, when the PCP seeks knowledge, it is advantageous to acquire training
through a focused model of care.

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Communication
Communication is the second overarching theme that emerged from the analysis of data.
Effective communication is one of the core principles of patient-family centred care (PFCC), and
is cited as vital to resilience, education and successful management of ASD (Carbone et al.,
2010). Respect, dignity and effective communication within the PFCC model provides support
for the child, and for parents, who are typically the primary care coordinators for their children. A
key aspect in their ability to provide effective care coordination is dependent on being able to
both form and sustain trusting relationships with the PCP (Carbone, Norlin & Young, 2016).
Parents identify the need to be seen, by their PCP, as partners in the decision-making
aspects of their child’s care (Carbone et al., 2010). As such, PCP knowledge deficits linked to
ASD can be barriers to forming trusting relationships, resulting in communication breakdown
and a perceived lack of parent support, whereby parents disengage, leading to suboptimal health
outcomes for the child with ASD (Carbone et al., 2010).
This theme explores four subthemes that were identified in the literature as influential in
the parent-PCP communication dyad: The first subtheme exploring PCP strategies when working
with children with suspected ASD is information sharing. Parents of children with ASD
eventually become experts in the management of their children’s ASD needs (Carbone et al.,
2010; Mulligan et al., 2012). Parents therefore require significant levels of ASD quality and
evidence-informed information (Mulligan et al., 2012). In the second subtheme, multiple authors
highlight listening as an essential factor in effective communication, and identify the risk and
difficulties created by the PCP when parents believe their concerns or expertise are rebuffed or
dismissed (Bloch & Gardner, 2007; Carbone et al., 2010; Hennel et al., 2015; Mulligan et al.,
2012). Studies by Mulligan et al. (2012) and Rhoades, Scarpa and Salley (2007) identify the
importance of repeated interactions in establishing rapport with parents, the space in which
45

professional familiarity builds collaboration. Finally, the findings from Mulligan et al. (2012) and
Bloch and Gardner (2007) consider the significance of the PCP approaching difficult topics to
establishing trust and a sense of hope in the parent.
Information sharing. In addition to PCP confidence in their knowledge of ASD and
local resources, sharing information of services or peer support groups may influence how PCPs
guide parents towards earlier ASD intervention opportunities. In Monteiro et al.’s (2015) study,
once a referral was sent and the child was placed on the assessment waiting list, the specialist
assessment team mailed parents with written information encouraging parents to initiate early
ASD therapy. Additionally, parents were provided with information on funding sources, and had
access to a social worker while they waited. With this information, parents were able to initiate
intervention and start the process of seeking financial support, as care of a child with ASD is
known to be costly (Monteiro et al., 2015). These findings highlight the diversity needed for
PCPs to actively promote communication strategies. For example, using different forms of
information sharing such as written and verbal information enhanced communications. The twoway nature of information should not be neglected. Often, once a referral is in ‘situ’, the PCP can
be left waiting to hear from the specialist service. PCPs will therefore act as the focal point to
reach out for updates and receive specialist service communications. The PCP then has the
responsibility of disseminating this information to the parents, answering any new questions or
concerns (Monteiro et al., 2015).
Rhoades, Scarpa and Salley (2007) completed an online retrospective, author-designed
survey to determine the experiences of parent interactions with their providers around the time of
their child’s ASD diagnosis. The study presented three hypotheses: Respondents would report
having received a diagnosis for their child between 3-4 years old; the majority of respondents
would report receiving little to no information about ASD from a diagnosing professional, and
46

that respondents would report using sources of information on ASD other than their PCP
(Rhoades, Scarpa & Salley, 2007). The participants (n=146) were asked, specifically in the
second section of the survey, if they received information at the time of diagnosis on a variety of
topics including; available ASD resources, general ASD information, referrals to ASD
specialists, or support groups (Rhoades, Scarpa & Salley, 2007). Within their findings, most of
the parents (82%) received information on ASD from their PCP at the time of diagnosis
(Rhoades, Scarpa & Salley, 2007). However, only 20% of parents described receiving most of
their ASD information from a healthcare professional versus other sources (Rhoades, Scarpa &
Salley, 2007). Parents reported that the majority of information was obtained from media sources
(including the Internet and books), conferences/workshops, and other parents (Rhoades, Scarpa &
Salley, 2007).
The authors identified that “although the majority of physicians are giving parents
information about ASD, this avenue of support [could] be significantly strengthened.” (Rhoades,
Scarpa & Salley, 2007, p.7). While there was no provider that had a “lack of knowledge” (p. 7)
on ASD treatment, subsequent explanations and follow-up dialogues related to the information
provided to parents was weak, leaving the authors questioning the rationale for provider
hesitancy in explaining information to parents (Rhoades, Scarpa & Salley, 2007). In addition,
Rhoades, Scarpa and Salley (2007) highlighted that some parents felt overwhelmed by the
volume of information available, and looked to their PCPs as a trusted resource to help them
filter information, suggesting that PCPs were “in a perfect role to guide families toward
information with empirical support” (p.8). The voluntary nature of an online survey distributed
via a support group network in America within this study provided a biased viewpoint (i.e. selfselected participants), however, the findings align with themes found in other studies, i.e. the
need for the PCP to strengthen parent understanding (Hennel et al, 2015; Mulligan, 2012). To
47

summarize, the study identifies that the PCP needs to be ‘ASD’ knowledgeable in order to
appraise what is both quality and safe ASD information. The PCP must then provide and use this
information to meaningfully support parents promoting their understanding of what ASD means
for their child.
In addition, Hennel et al.’s (2015) retrospectively surveyed n= 404 parents through a
postal mail survey about their experiences when their child received an ASD diagnosis. This
study also included the perspectives of paediatricians (n=43), enquiring as to the type and utility
of the information they provided to the parents during the process of reaching an ASD diagnosis.
Through a national research network in Australia, the authors designed a questionnaire and
surveyed both the families and pediatricians between 2010-2012 with key questions focusing
towards both participant groups on their perceptions of information received or provided at the
time of diagnosis. Overall, Hennel et al. (2015) identified that parents perceived that they did not
receive enough information at the time of diagnosis. Specifically, parents focused on a lack of
information linked to the following: ASD prognosis, allied HCP support, educational support,
parent support groups, early intervention and complementary alternative treatment (CAM).
Hennel et al.’s (2015) results revealed that parents expressed greater satisfaction with the
information provided at time of diagnosis when a support person was present. In contrast to
Rhoades, Scarpa and Salley’s (2007) parent reported findings, paediatricians in Hennel et al.’s
(2015) study perceived that they did provide adequate information on ASD topics at the time of
the child’s diagnosis. These findings suggest that information may be lost in translation during
these emotional experiences (Hennel et al., 2015). The findings from Hennel et al. (2015) and
Rhoades, Scarpa and Salley (2007) highlight that providers with additional training in the area of
ASD (i.e. developmental pediatricians) were more likely to provide additional ASD information
to parents. When parents were able to easily access useful information delivered by providers,
48

they were satisfied, and expressed feeling supported; this is reassuring, since only 18% of
providers failed to provide additional information following diagnosis (Rhoades, Scarpa and
Salley, 2007). It can be concluded therefore that failure to attend to parents ASD-informational
needs has a lasting impact on the parent-PCP relationship. Limited PCP provision of information,
and their hesitancy, remains with parents many years after diagnosis, and is internalized by
parents through questioning PCP knowledge of ASD in early childhood, and hence their
confidence to engage in meaningful future care provision.
Mulligan et al. (2012) provide the final study contributing to the information-sharing
theme. In their phenomenological narrative study, Mulligan et al. (2012) used parent interviews
to explore ten parent experiences of their child’s ASD diagnosis. Their study resonates with
Hennel et al.’s (2015) findings in describing the abandonment that parents felt as a result of PCP
limited knowledge, fearfulness, or low confidence levels which limited supportive management
of ASD following diagnosis (Mulligan et al., 2012). Parents in the study described searching for
information prior to a diagnosis from the Internet or friends and feeling overwhelmed with
information after a diagnosis. After receiving a diagnosis for their child, parents also described
feeling powerless and frustrated with resource limitations, describing “long waiting lists, rigid
admission criteria, and limited resources, amid little professional guidance and continuity across
service providers” (Mulligan et al., 2012, p. 321). Drawing from the findings the significance of
PCP attitude was linked to transparency when discussing new information (Mulligan et al.,
2012). There is need to be cognizant that in order for the PCP to be able to do this they have to be
knowledgeable, confident and competent in the areas of care of ASD in younger children. If
PCPs are to support parental autonomy and raise awareness of ASD choice, they must be
respectful, and inclusive in decision-making with parents. PCPs also need a sound knowledge
base and confidence to act in engaging ways that foster and champion parental empowerment.
49

Parental empowerment was defined within the study as a “process of gaining personal power and
control” within the health care setting (Mulligan et al., 2012) and something to be supported
when working with parents. When sharing information with the intent of empowering parents,
the PCP needs to be prepared to discuss topics including: diagnostic criteria, prognosis, system
care, next steps in intervention, and the parent role (Mulligan et al., 2012).
Listening. Three studies demonstrated parental frustration at feeling dismissed for raising
their initial concerns about their child’s behaviours with a PCP (Bloch & Gardner, 2007; Carbone
et al., 2010; Mulligan et al., 2012). In Bloch & Gardner’s (2007) explorative interviews with
caregivers, they described frustration when their PCP did not have compassion for the challenges
they faced. The ability of the PCP to listen with empathy was highly valued (Bloch & Gardner,
2007). Carbone et al. (2010) recognized the impact listening had on caregivers as a ‘protective
factor’, since it allowed parents to express frustrations and stressors in a safe space. Of note,
parents desired simple questions that sought out how they were coping and how the family as a
whole was doing (Carbone et al., 2010). Conversely, providers in the study commented on their
“lack of skill” in alleviating parent stress, recognizing their failure in providing support (Carbone
et al., 2010, p. 321). Both perspectives demonstrate that parents expect emotional support from
their providers, although providers may not know how to initiate these conversations, thus
creating barriers to communication.
Parents from Carbone et al.’s (2010) study described how they viewed themselves as the
primary care coordinators in their child’s care, and as such, expected recognition from their
providers. The providers in the study corroborated with this perspective, describing parents as
better experts than themselves on ASD and local resources. However, the authors noted that
“early negative experiences [with providers] strongly influenced [future] interactions” (Carbone
et al., 2010, p.320). This sentiment demonstrates that when parents feel dismissed or their
50

expertise is not recognized, parents will change providers, or alternatively avoid seeking out
support (Carbone et al., 2010).
Parents also described losing confidence in their own expertise when the PCP dismissed
their opinion or concerns, serving as a barrier to a family-centred care approach (Carbone et al.,
2010). Trust was further impeded when parents brought forward information they acquired from
other sources and were met with a negative response from their provider (Carbone et al., 2010).
For example, Carbone et al. (2010) discussed how parents experienced negative responses from
their provider when discussing CAM, creating a barrier to consultation and provider input.
Providers in the study had mixed feelings about the scientific integrity of CAM, although
younger providers seemed more open to discussing it (Carbone et al., 2010). Conversely, Hennel
et al. (2016) stated that up to 95% of parents use CAM with their children. These reports
demonstrate the need to establish respect between the PCP and parent, and that a lack of PCP
sensitivity to parent-perspectives creates a significant divide in their relationship.
The final study by Carbone, Norlin and Young (2016) that contributes to the listening
subtheme highlights a positive perspective on listening. In Carbone, Norlin and Young’s (2016)
study, the authors specifically included parents in practice teams as part of the learning
collaborative, proposing “parents are considered essential team members because they assist
practices in creating family-centred changes” (p.2). The study demographic included both urban
(60%) and rural (40%) practices (n=26), with over 80% of the provider cohort having been in
practice for more than five years, and more than a third caring for children with ASD for over a
decade. During this time, providers had had the opportunity to reflect, refine, and reflexively
apply their ASD knowledge, as well as their communication skills, i.e. listening. Although not
stated in the study, Carbone, Norlin and Young (2016) have dual roles as providers of care for
children with ASD and their families within their own clinical practices. While likely informed
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by their clinical knowledge, their research methodology may be open to bias, since they hoped to
demonstrate the positive impact on the relationship between PCPs and parents. However, the
practice teams in their study were not their clinical partners, and the learning collaborative
approach used retrospective chart audit to see changes in provider screening and support for
toddlers with ASD.
Examining the patterns across these studies (Bloch & Gardner, 2007; Carbone et al.,
2010; Carbone, Norlin and Young, 2016; Hennel et al., 2016; Mulligan et al., 2012) there is
evidence that when providers listen to their patients, and use reflexivity, they influence parentPCP interaction, and act as role models to other providers and stakeholders. Through active
attentive listening, the PCP’s ability to hear parent concerns influences their ability to advocate
for children with ASD in the community, and even champion for new services. Furthermore,
PCPs can incorporate what they learn about the patient experience into new research initiatives,
influencing future clinical practice. Listening to parents therefore improves the parent-PCP
relationship, and also influences the PCP’s ability to effect system-wide practices within primary
care.
Repeated interactions. The parents in Mulligan et al.’s (2012) study describe how a
significant part of the ASD referral and diagnosis process is emotional. Parents therefore require
time to come to terms with the diagnosis (Mulligan et al., 2012). Their findings highlight the
need for extended time during appointments, timely follow-up appointments for parents to
receive thorough information, as well as time for parents to ask questions (Mulligan et al., 2012).
In support of these factors, Hennel et al.’s (2016) study compared parent and provider
perspectives on the amount of time to discuss a new diagnosis and found that only half of the
providers felt they had enough time to provide adequate information to parents. Rhoades, Scarpa
and Salley’s (2007) online survey further highlights the gap in repeated interactions in parent52

PCP relationship by identifying that only 18% of parents sought out follow-up information from
their PCP. For PCPs, the discordance indicates the need to share small sections of information at
a time during appointments, preferably with a support person present; repeating information in
both written and verbal methods and taking the time to check in on the parent’s understanding
(Hennel et al., 2015; Mulligan, 2012; Rhoades, Scarpa & Salley, 2007). Providing information
with such techniques allows parents to fully understand the information they are receiving,
thereby empowering their decision-making abilities, and increasing likelihood of respectful,
productive dialogue between parent and PCP.
Approaching difficult topics. Compassionate listening to a parent’s concerns extends to
communicating to parents during times of distress (Mulligan et al., 2012). Several studies
describe the importance of considering what, how and when to deliver professional and welldelivered information, along with opportunities to ask questions on a regular basis (Bloch &
Gardner, 2007; Carbone et al., 2010; Hennel et al., 2016; Mulligan et al., 2012). This open-door
form of communication opens up dialogue, and empowers parents (Mulligan et al., 2012).
Mulligan et al. (2012) discuss how initial concerns are brought up by the PCP or other
health care providers, but are dismissed in an attempt to decrease parent worry. Bloch and
Gardner (2007) further add to the concept of ‘difficult conversations’, detailing how caregivers
describe providers as afraid to “upset” caregivers by suggesting their child has ASD. Although
for some parents, the suggestion posed by the PCP that the child may have ASD can be a
welcome relief, allaying their own doubts and confusion. The PCP is therefore able to validate
their concerns that something is not “quite right” with their child (Mulligan et al., 2012).
When considering communication during and after diagnosis, Mulligan et al. (2012)
examine how communicating difficult information is most appreciated when coming from a place
of hope. Within parent interviews, parents describe a need for information that is transparent and
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honest, while also offering a sense of hope and compassion (Bloch & Gardner, 2007; Carbone et
al., 2010; Hennel et al., 2016; Mulligan et al., 2012). Parents further describe feeling
overwhelmed with information during the time of referral and diagnosis (Carbone et al., 2010;
Hennel et al., 2016; Mulligan et al., 2012). Therefore, once a diagnosis has occurred,
conversations around stress and coping become invaluable to the parent (Bloch & Gardner, 2007;
Mulligan, et al., 2012). Conversely, several studies demonstrate how a lack of transparency or
skill in navigating these conversations can be destructive in parent-PCP rapport (Bloch &
Gardner, 2007; Carbone et al., 2010; Hennel et al., 2016; Mulligan et al., 2012).
Finally, Hennel et al. (2016) also explore the topic of satisfaction of information provided
at the time of diagnosis and afterwards, comparing parent and pediatrician perspectives on the
adequacy of meeting these expectations. Their study demonstrated that although many parents
were satisfied with information provided at the time of delivery, most information was received
from allied health care providers after the diagnosis (Hennel et al., 2016). This suggests that the
PCP may not be the primary source of support, but can still support the parents emotionally
through honest, transparent communication and providing information to services such as parent
support groups or social workers (Hennel et al., 2016).
To summarize this chapter, both the overarching themes and subthemes share elements
linked to knowledge and communication. The aim in trying to fragment the primary care
providers role in order to answer the question “What are primary care strategies for supporting
the parent(s) of children aged 18-36 months with suspected ASD?” was challenging. However,
core themes that draw together elements linked to practice complexities are discussed in Chapter
Four.

54

CHAPTER FOUR: DISCUSSION, IMPLICATIONS FOR PRACTICE, AND
RECOMMENDATIONS
This review sought to answer the question, “What are primary care strategies for supporting the
parent(s) of children aged 18-36 months with suspected ASD?” The previous chapters in this
review identified ASD in children as a complex, multifaceted condition that affects the child and
their family. This final chapter considers these findings and how they relate to a patient and
family centred care (PFCC) model and its use within primary care settings. Furthermore, this
chapter proposes several recommendations for practice, which build upon the analysis conducted
in prior chapters. Through thematic analysis, the previous chapter identified two overarching
themes with subsequent subthemes; Primary Care Provider (PCP) Knowledge and
Communication were identified as the key themes that influence PCP strategies to support
parents of children with suspected ASD.
PCP Knowledge encompassed subthemes of acquiring information, personal factors that
influence the PCP’s ability to acquire knowledge, and team factors that influence knowledge.
Findings demonstrated that this theme and its subthemes significantly influence the PCP’s
functional ability to provide competent, comprehensive care.
The second theme Communication, within the context of primary care strategies, included
listening to, information sharing, broaching challenging subjects, and continuing interactions
with parents and family after the initial suspicion of ASD until the initial diagnosis.
Communication, and its subthemes’ significance to the PCP role, is demonstrated through the use
of openness, honesty, and compassionate communication when establishing relationships with
parents, thus strengthening the parent-PCP partnership and collaborative decision-making
process.

55

To help organize the two themes for further discussion, this paper adopted the use of the
PFCC model. Both the PFCC model and its principles were identified in several of the studies
and supporting literature, and reflect the values and themes portrayed in this review. A PFCC
model developed by Pelzang (2010) was adapted to organize this chapter and frame the
discussion of further details and findings. Table 4 outlines the structural components of the
specific PFCC model originally created by Pelzang (2010), which provides a visual interpretation
of where the themes and subthemes of this review fit into an already existing framework for
patient-centred care. It should be noted that several terms described in the original model differ
from terms used in the findings, however, many of these concepts are related or overlap.
Table 4
Patient and Family Centred Care Model (Adapted from Pelzang, 2010)
Project Key Findings
PFCC Model Factors
Outcomes Strong PCP-parent
Parent Satisfaction
alliance
Involvement
Parent empowerment
Improved health
Improved ParentWell-being
functioning
Therapeutic culture
Timeliness/efficacy
Process Collaborative
Engagement, shared decision making
partnership
Work with patient beliefs and values
Work with family
Sympathetic presence
values with dignity and Providing for all needs
respect
Open, honest,
compassionate
communication
Foundational
Organizational
PCP attributes
Structure of
attributes
PFCC Acquiring Information Competence
Time
Skill diversity
Communication Communication Supportive
skills
organization
Shared power &
Personal Factors Commitment
decision making
Innovation/creativity
Team Factors Interpersonal
Team relationships
skills
Role clarity

Patient
attributes
Perception
Participation
Perspective of
care
Cooperation
Culture

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Looking at the adapted model, PFCC is visualized as a hierarchy, with a foundational
‘structure’ to create the optimal patient-centred environment (Pelzang, 2010). This ‘foundation’ is
divided into three components, or pillars: Personal professional attributes, Organizational
attributes, and Parent attributes. These pillars create the foundation required for the PFCC
process and its intended outcomes.
The themes and subthemes from this review primarily fall under the first pillar, ‘Personal
and professional attributes.’ However, each structural component has a nexus affect on the other.
PCP attributes influence organizational and parent attributes, and vice versa. This is evident in
several of the subthemes from this review, which identified organizational or parent attributes
that influenced or were influenced by the PCP role. This chapter discusses these themes and
subthemes, using the three foundational structural components of PFCC to organize and better
understand how each theme and pillar may influence the other. Following a discussion, this
chapter will present recommendations for practice, the limitations of this integrative review, and
future directions in research.
Personal and Professional Attributes
‘Personal and professional attributes’ is the first pillar in the PFCC foundational
framework and is the most relevant pillar to the findings of this review. Personal professional
attributes are special characteristics that the PCP must embody in order to create an environment
conducive to patient-centred care. Personal professional attributes are divided into three factors,
including PCP commitment, PCP competence, and PCP communication skills. The themes and
subthemes from this review align with these three factors. Commitment, competence, and

57

communication skills align, respectively, with the subthemes from PCP Knowledge – personal
factors and acquiring information, and the overarching theme Communication.
Commitment. In this review, PCP willingness was identified as essential to providing
quality care (Carbone et al., 2010; Garg et al., 2014). ‘Willingness’ aligns with the PFCC concept
of ‘commitment’, which motivates the PCP to provide care for the patient, engage in shared
decision-making, and develop working relationships based on mutual respect and shared values
(Pelzang, 2010).
Factors that contribute to PCP commitment to learning about ASD and providing better
care for this population include a personal interest or involvement with children with ASD,
mental health, or related conditions (Garg et al., 2014). This willingness and commitment to
provide optimal care also serves as a motivator for the PCP to seek out training, and address their
personal gaps in knowledge. PCPs may have a vested interest in training if they frequently see
patients with ASD in their own practice, or if concerns regarding gaps in care are often identified
in the clinical practice setting. Focusing strategies on the PCPs with a personal interest, whose
commitment and willingness to learn make them receptive to innovation, creates PCPs that are
agents of change in the ASD domain. Strategies should focus on learning across a range of
diverse platforms, including alternative approaches to care, new research, and innovations aimed
at effective delivery of care. Successful learning strategies can provide direction for committed
PCPs, resulting in individuals becoming champions in ASD care, encouraging leadership and
influencing future practice (see: Recommendations).
Demonstrating commitment to optimal care is the PCP’s internal constituent required to
meet both PFCC attributes as well as regulatory body standards of duty to provide care.
Professional standards that determine the expected level of provider performance typically
include professional responsibility as part of its mandate. For example, the regulatory body for
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NPs, the British Columbia College of Nursing Professionals (BCCNP), states that they are
“accountable and take responsibility for [their] own nursing actions and professional conduct” in
clinical practice, education, administration and research, in order to “promote provision of safe,
appropriate and ethical care” and “develop policies, practices and education consistent with
standards of the profession” (BCCNP, 2018, p.8). Therefore, the concept of commitment relates
to the PCP’s expected professional duty and responsibility to provide competent patient care.
Competence. The studies in this review demonstrate that PCP competence correlates to
their acquired knowledge, and perceived self-efficacy (Carbone, Norlin & Young, 2016; Garg et
al., 2014; Monteiro et al., 2015).
PFCC uses the term ‘competence’ to indicate the PCP's ability to provide entry-level care.
Similarly, professional regulatory bodies such as the BCCNP define “competence” as the ability
to apply acquired knowledge, skill and judgment with the appropriate indication, to make
context-appropriate decisions (BCCNP, 2018). Although competence cannot be measured, a
PCP’s ‘competence’ is determined by a series of measurable indicators, or ‘competencies’,
which are based on the individual’s knowledge, skills and abilities. These ‘competencies’ can be
used to determine the PCP’s entry-level capability to practice, and once acquired, are maintained
through continuing professional development (BCCNP, 2018).
For the PCP, acquiring knowledge serves to maintain competence and continue
professional development, for the purpose of supporting patients and their families. Studies
suggest that delayed ASD referrals may be related to PCP uncertainty or lack of familiarity with
the topic (Carbone, Norlin & Young, 2010; Garg et al., 2014; Hennel et al., 2016; Monteiro et al.,
2015). This review therefore suggests that PCPs need to be aware of their own gaps in
knowledge, and must be able to both seek and apply knowledge to practice in order to care for
individuals with ASD and their families. Knowledge acquisition involves the ability to
59

disseminate, implement and retain information on ASD, and is demonstrated by the use of
evidence-informed protocols, examining individual understanding, and determining the utility of
each aspect into practice.
Throughout the literature, providers gain knowledge of ASD from both experience and
education (Bloch & Gardner, 2007; Feinberg et al. 2016, Garg et al., 2014). Education involves a
variety of opportunities, including research, training, community involvement and clinical
practice. Examples of educational opportunities from the studies include training on general early
childhood development, ASD red flags, and reaching out into the community to learn about
available services (Bloch & Gardner, 2007; Mulligan et al., 2014). The PCP must be cognizant of
atypical development (i.e. be skilled in using ASD screening tools), understand the family
experience, and be able to facilitate parent decision-making. The knowledge that PCPs acquire
during their training, as well as through observation in clinical practice, must then be
contextualized in order to translate evidence and experience to practice. This synthesis of
knowledge, experience, and context must occur to create higher levels of change at meso and
macro levels.
Studies also identified that self-efficacy contributes to PCP competence (Bloch &
Gardner, 2007; Carbone et al., 2010; Garg et al., 2014; Monteiro et al., 2015). A comprehensive
understanding of self-efficacy is beyond the scope of this review; however, one theory of “selfefficacy” is defined as a person’s belief in their ability to perform a presenting or future task or
skill (Bandura, 1977). This review suggests that low self-efficacy as perceived by the PCP can be
used as a prompt to consider gaps in knowledge, and motivate the PCP to seek ways to address
their learning needs. Several of the studies demonstrated that low self-efficacy and confidence,
despite adequate knowledge, negatively influenced competent care (Carbone et al., 2010;
Carbone, Norlin & Young, 2016; Monteiro et al., 2015). Although self-efficacy is not a
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measurable indicator of competence, it can be used to recognize personal level of comfort in
providing care for children of ASD. Therefore, as self-regulating professions in BC, the PCP
must have the ability to rate self-efficacy in skills demonstrates the ability to reflect on practice
and competence in care, and to seek professional development.
Several barriers are highlighted to maintaining professional development. Firstly,
acquiring additional training is time consuming, and costly (See: Time and Timeliness) (Carbone
et al., 2010). Secondly, additional training on ASD can be exceptionally broad (Garg et al.,
2014). For example, training can vary from learning about community service availability and the
political atmosphere, to general ASD pathophysiology. These barriers may prevent or intimidate
the PCP from seeking new information, or investing individual time or resources. In light of these
barriers, Lindsay et al. (2016) suggests that PCPs “benefit by a more specific ‘fit’ between
personal learning needs and the activities pursued to address these needs” (p.43).
Recommendations for the PCP therefore include the creation of individually determined learning
strategies based on each PCP's learning needs, and seeking out focused avenues of knowledge,
through personal experience, journal articles, workshops, or traditional classroom settings that are
ASD-focused.
Communication skills. Communication skills are the third component of personal
professional attributes in the adapted PFCC model. ‘Communication’ is a complex concept,
linked to relationships and role clarity with members of the multidisciplinary team and the
family, and its impact is highlighted further in Organizational and Parent Attributes.
Communication skills are an important requirement to building trust, and facilitating
reciprocal family engagement. Considering a PFCC approach, the PCP’s communication skills
empower the family to make informed decisions (Pelzang, 2010). The ability to communicate
and share information encourages talking about positive and negative experiences in order to
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change, improve, and develop practices and policies (Pelzang, 2010). Several studies focusing on
communication demonstrated the value of the nature of language, active and compassionate
listening, and the PCP’s ability to approach difficult topics (Bloch & Gardner, 2007; Carbone et
al., 2010; Mulligan et al., 2014).
Risks of poor communication skills include the inability to articulate initial concerns
when ASD is suspected, the loss of information relevant to referral or intervention, and
exacerbation of parent confusion and isolation. Reflecting on the studies that did not explicitly
use a PFCC model also support this review’s conclusions in that the value and impact of good
communication, identifying the need to share information from a place of hope, and using
varying forms of communication such as combined verbal and written information, all enhance
care.
Consistent and transparent communication is a key aspect that demonstrates principles of
dignity and mutual respect between patient and provider. PCPs who attend to their information
sharing and communication styles ensure that families feel heard and empowered during clinical
consultations. Communication therefore enhances the overall health care experience for the
family, which is critical in developing and sustaining the parent-PCP relationship.
Organizational and Parent Attributes
This section considers aspects of the second and third pillars necessary for the
implementation of successful PFCC; namely, the PCP’s role and influence on Organizational
Attributes and Parent Attributes. Two specific organizational components are discussed in the
context of this review’s findings: the multidisciplinary team and timeliness. The multidisciplinary
team fits into the subtheme of ‘team/organizational factors’ from this review’s theme Knowledge.
Factors from both overarching themes relate to the concept of timeliness and parent attributes.

62

The multidisciplinary team. Studies in this review found that quality care for children
with ASD and their families involves a multidisciplinary approach (Barbaro & Dissanayake,
2010; Carbone, Norlin & Young, 2016; Garg et al., 2014). When the multidisciplinary team is
able to collaborate effectively, the perspective and strength of multiple disciplines can promote
optimal care for family support and ASD intervention (Barbaro & Dissanayake, 2010; Feinberg
et al., 2016). This review suggests that effective multidisciplinary team functionality is dependent
on role clarity, a team approach to understanding collaboration, and advocacy of resource
availability. As such, PCPs must be flexible and adaptable, possessing skills that allow them to
navigate the multidisciplinary team and local community resources.
This review identifies clear role identification as a necessary tenet within the
multidisciplinary team supporting families in a PFCC model (Pelzang, 2010). Despite these
findings, PCPs and other health care professionals may still not understand how to identify or
express their roles in daily practice. Risks of role confusion include miscommunication, and
missed opportunities to provide optimal care. For example, PCPs who do not understand their
role in the multidisciplinary team may not understand their role in referral for ASD assessment,
leading to delays in care. The PCP role should therefore be considered alongside other
professions in order to optimize care. Clear role boundaries and shared responsibilities must be
navigated within the team in order to optimize care for the young patient suspected of ASD.
Despite the reported benefits of role clarity, parents and PCPs alike reported that PCPs
have limited exposure and understanding of their role in collaborating with other professions,
including educators, speech language pathology, or subspecialists (Carbone et al., 2010).
Collaboration may prove challenging if other disciplines are not available as a local resource, or
if disciplines are working in isolation. PCPs in Carbone et al.’s (2010) study demonstrate that
they are often at the limit of personal capacity and unable to take on more responsibility within
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their workload. With the PCP having to direct clinical practice time and delegation of tasks,
finding time to collaborate with other disciplines proves challenging if no formal informationsharing system has been set in place. Furthermore, each discipline is likely to have their own
‘philosophy’ of care, and there may be tensions that could impact care to the child and family.
These tensions and gaps in care therefore need to be acknowledged and addressed in thoughtful
ways.
Other risks to working in isolation include family expectations that the PCP will provide
many services, while also being a source of the latest information on ASD. However, the PCP
loses collateral information on children that other disciplines have opportunity to observe more
frequently. For example, it is often public health nurses (PHNs) or early childhood educators who
identify children who may have ASD. These barriers result in missed opportunities for the child
and family in respect to access, education, and early intervention. Moreover, families do not
receive the full scope and complementary services that a multidisciplinary team can provide. If
the PCP can follow up and delegate tasks to someone who is competent and confident in ASD,
they need to be clear about which tasks they are holding on to. Multidisciplinary team patterns of
working allow the parents to form connections with those they feel more comfortable with. While
this may or may not be the PCP, the PCP continues to have a role in supporting the families, as
they are often still the first health care professional that parents seek out, and therefore serve as
gatekeepers, system navigators, and a source of emotional support.
In conclusion, the PCP must actively and meaningfully engage in forming and sustaining
professional relationships with other key providers through innovative and dynamic approaches
to overcome disconnects between the multidisciplinary team (e.g. speech and language
pathologists, early childhood educators). Like many providers, the PCP’s time is limited;
therefore, creative approaches to connecting with providers may be necessary when resources are
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scarce, or services are not co-located in the same geography. Effective multidisciplinary teams
have the potential to liberate the talents for all partners, each having the opportunity to learn from
a different discipline, thereby sharing knowledge and learning new skills in supporting families
during the latent stage while awaiting a diagnosis. Partial onus to improve the multidisciplinary
team approaches depends on the health care authority or governmental ability to perceive and act
upon gaps in service. The PCP must therefore demonstrate leadership skills and advocate for
their patients to health authorities and higher levels of government to increase awareness of
service gaps (Pelzang, 2010). Finally, approaches that maximize technology, as well as formal
information- sharing networks are ways in which PCPs can stay connected to others and aware of
timeliness.
Time and timeliness. In addition to the multidisciplinary team, time is a valuable
resource required within Organizational Attributes for successful PFCC implementation. PCP
skills and competence can affect outcomes in time management. The foundational attributes of
PFCC encourage effective time spent between provider and family, thus providing an upstream
approach to time management. However, the ability to successfully apply PFCC principles
requires initial time spent determining patient issues, adopting strategic leadership, and
incorporating patient-PCP collaboration.
According to PFCC principles, PCPs require adequate knowledge of patients, clinical
skills to care for patients, and proficient communication and relational skills. With time, the
dynamic between the provider and the family changes, therefore helping relationships grow.
Time is therefore also considered in relation to the skill of being with the patient and gaining
rapport, applying knowledge, and developing an interest in the research. Ongoing PCP time for
learning and skill application is significant. Inadequate time can create a barrier to PFCC

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implementation, and ultimately to the development of meaningful relationships with parents and
families, with the risk of patient disengagement.
In this review, factors within the two overarching themes are associated with the concept
of timeliness, and are often linked to the perception of satisfactory or unsatisfactory family care.
First, acquiring knowledge was often dependent on time (Carbone et al., 2010). PCPs reported
they did not have enough time to seek out specific information on ASD, and found appointment
times too short to sufficiently assess a child or listen to parent concerns. Inadequate time impeded
the PCP’s ability to share comprehensive information with parents about ASD during and after
diagnosis. Moreover, time was imperative to achieving the benefits associated with repeated
interactions between parents and PCPs (Mulligan et al., 2012; Rhoades, Scarpa & Salley, 2007).
Secondly, following an ASD diagnosis, finding time for quality care was also difficult in the
studied clinical settings (Hennel et al., 2016; Rhoades, Scarpa & Salley, 2007), suggesting that
many PCPs face clinical cultures that expect brief visits and high patient visit numbers. Such
organizational barriers to time availability can be dependent on the biomedical model, which
encourages short amounts of time spent with patients, and not enough time to reflect on listening,
information sharing or shared decision-making. The findings in this review illuminate that PCPs
involved in the care of children with ASD face challenges similar to many PCPs attempting to
implement PFCC into general primary care, “often report[ing] that they know what to do
clinically, but system related issues such as time constraints or access to community referral
resources of diagnostic testing create barriers to applying their clinical knowledge” (Lindsay et
al., 2016, p.39). This suggests that PCPs involved in the care of populations with ASD must have
time allocated to both learning, as well as to implementation and evaluation of practice changes.
One approach that has been favoured for improved timeliness is the creation of a registry
of children with possible ASD in order to improve follow-up and monitoring (Carbone, Norlin &
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Young, 2016). Such an organizational strategy could identify children with suspected ASD, and
in turn prompt the PCP to prepare for these visits, follow up in a timely manner, and consider
longer appointments when necessary. It could also ensure that future interactions address child
development and prioritize conversations on child development with parents, therefore improving
efficiency and effectiveness within each appointment. Further recommendations for acquiring
quality time to implement effective PFCC include PCP advocacy for professional cultural shifts
away from a limited disease-focused, biomedical model, to a model that allows the PCP to spend
more time in quality patient interactions. The PCP can also advocate for continuing professional
development in avenues outside of the typical understanding of disease and its management such
as other necessary structural components supporting PFCC; these may include interprofessional
collaboration, supportive administration, and scheduling.
The parent role. The findings in this review identify that clear role identification is
necessary in the parent-PCP relationship. Oftentimes, families and providers will assume roles,
rather than openly and explicitly discussing them. These assumptions can potentially lead to
misunderstandings in communication, relationships, and patient care.
Within this integrative review’s findings, parents reported feeling alone, overwhelmed
and unaware of whom to turn to for help while waiting for or after receiving an ASD diagnosis
(Carbone et al., 2010; Hennel et al., 2016; Mulligan et al., 2012). These feelings of isolation may,
in part, demonstrate lack of communication from their initial contact with the PCP regarding role
expectations in their child’s ongoing care. Eventually, parents often learn to adopt the care
coordinator role for their child and become experts in their own field. The initial emotional
turmoil associated with role confusion can be lessened with the use of a health care model such as
PFCC since clear role identification is an integral part of its structural organization. In addition to
openly discussing and clarifying these roles and expectations in a child’s care, the PCP also has a
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duty to recognize and respect the role that the parent plays in their child’s care. Consequences of
a PCP’s dismissal of parent knowledge or overlooking parent expertise in their child’s behaviour
and management can result in low parent regard for the PCP’s competence, feelings of distress or
lack of buy-in, or avoidance of future interactions with the PCP (Carbone et al., 2010; Hennel et
al., 2016; Rhoades, Scarpa & Salley, 2007). According to the findings of this review and the
PFCC model, active participation and recognition of PCP and parent roles is necessary and
integral to negotiating patient care and collaborative decision-making.
Recommendations
This final section will summarize the recommendations for PCP practice based on the
findings and discussion of this review. There is a significant knowledge deficit in regards to ASD
among providers in health care. The complex nature of ASD, and recent changes to its diagnostic
criteria, create challenges in understanding the needs of these children. Specifically, this review
provides recommendations for PCP practice during the waiting period of time that occurs
between recognizing ASD symptoms in a young child, to their formal assessment and diagnosis.
Interventional support strategies for these children often focus on educational and
behavioural needs, and less so on the supportive role of the PCP. It is important to understand
that families of children with suspected and newly diagnosed ASD have distinct needs that
require support from many different systems of care, including educational systems, allied health
and primary care. Results from this review support the need for complex systemic changes to
address their needs. The recommendations presented here therefore seek to address issues from
front-line delivery to system-wide restructuring. Based on the focus of this review, the strategies
recommended here are tailored to the PCP role. These recommendations were developed from
the findings of studies that explored the experiences of other health care professionals such as

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nurses, social workers, and medical specialists and therefore can be applied to any person caring
for families of children with suspected ASD. Furthermore, although most of the studies in this
review observed populations in urban demographics, it is possible to utilize these
recommendations in rural or other settings, albeit likely with some modification, depending on
human and other resource availability. Table 5 provides a summary of this review’s
recommendations; following the table, these recommendations are briefly summarized.

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Table 5
Primary Care Provider Strategy Recommendations
Theme One: Knowledge
Recommendations
Level of Change
Strategies
Additional Training
Micro
• Create individually determined learning
plan, where possible negotiating managerial
support.
• Explore becoming a practice champion,
developing updates and sharing new practice
standards and policy.
• Take courses/seek information on ASD,
general development, referral process and
ASD management
Meso
• Seek information on local community
services, interventions, and referral
pathways, create recommendations to share
with other local PCPs
• Propose ways in which to address
information and knowledge deficits within
local teams by exploring collaborations with
research teams.
• Seek information on local support groups
and advocacy groups
• Appraise existing resources that local
populations are utilizing within a systematic
approach, and share this with networks, peer
support groups and families
Personal Factors
Micro/Meso
• Demonstrate willingness to engage in
parent-PCP relationship
• Be willing to engage in communication
development
Restructuring team and
Macro
• Advocate for and adopt a health care model
health care models
that is patient and family centred embed
within clinic, community, or health authority
• Seek support and information-input from
allied health professionals, educational
professionals, and local member of the
legislative assembly
• Seek out community services i.e. schools,
childcare programs, OT/SLP, rec centres to
gain knowledge in availability and utility
• Engage with other allies in health authorities
and local government to improve local
services and resource availability
Theme Two: Communication
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Recommendations
Information Sharing

Level of Change
Micro/Meso

•
•
•

•

Approaching difficult
topics

Micro/Meso

•

•

Listening

Micro

•
•
•

•

Macro

•

Strategies
Provide verbal and written information at
appointments
Plan for follow-up following referral or new
diagnosis to assess family well-being
Once referred, encourage family to bring
support person to appointments and
assessments for better information retention
Discuss scheduling with
administration/MOA to set up longer
appointment times or repeated interactions
for developmental assessments
Discuss difficult topics from a place of hope;
normalize concerns, fears, and introduce
available resources of support
Create surveillance list within primary care
clinic for children with suspected ASD and
to initiate/follow-up on concerns or
conversations about child’s development,
using existing technology i.e. electronic
medical records
Develop therapeutic relationship
Listen to and validate parent concerns
Listen to complementary alternative
medicine (CAM) ideas, encourage
empowerment on how to choose CAM and
how to do research for informed decisionmaking
Find a champion for CAM-related therapies,
ask to work in partnership with them to
explore how to advocate for this with
families
Listening to parent/team concerns on
resource availability or challenges accessing
services; advocate for policy and procedure
changes within health authorities or within
current government standards

Additional training and personal factors. Create an individualized learning plan and be
willing to seek out information on ASD. PCPs that have a personal interest and willingness to
learn more about ASD can take on a role as leaders for change. Seeking sources of information
can include personal experiences, research journals, workshops, and courses.
71

Parent-PCP relationships. Develop positive parent-PCP relationships. Enter relationship
with positive regard of parents as experts in their child’s behaviours and issues. Take time to
listen to parent initial concerns and during waiting period pending diagnosis, and validate and
normalize the stress of the referral and diagnosis process. Encourage conversations to promote
informed parent decision-making, and provide opportunity for additional appointments to allow
for follow-up questions and concerns. Additionally, use parent expertise to evaluate resource
needs within the community.
Multidisciplinary team relationships and organizational changes. Develop
relationships with local services and allies. Developing these relationships can inform parents of
existing service availability and limitations. These relationships can encourage earlier PCP
referrals regarding concerns about a child from health and non-health care providers more
quickly. Seeking out community stakeholders can also lead to collaboration development and
lobbying opportunities for community resources.
Within the clinic setting, recommendations include administrative changes to accomodate
for parents of children with suspected ASD. Barbaro and Dissanayake (2009) and Carbone,
Norlin and Young (2016) utilized a registry for identifying at-risk children to ensure proper
follow up, evaluation and if deemed necessary referral for ASD diagnosis. Registries can also
improve time management, as next appointments can be made longer to focus specifically on
developmental milestones. Registries can encourage repeated interactions with families, and
providing parents with information on development at these appointments can also provide
opportunity for PCPs to initiate conversations around child development early, improving the
ability to approach difficult topics if the child is not meeting expected milestones.

72

Limitations and Recommendations for Future Research
Several limitations and biases in this project potentially influence the use of the literature
in the clinical setting and context of this review’s question, and will be discussed in this section.
Personal limitations. The author of this review completed this project with limited
primary care experience. This may have provided a more objective perspective on determining
effective PCP strategies; however, factors may have been interpreted differently or missed due to
limited exposure to this type of setting.
Study limitations. A major limitation of the findings is in the limited number of locally
based studies relevant to the topic. Most studies were completed by USA and Australian
researchers, which affects the ability to directly explain or provide strategies for PCPs in BC.
Several of the studies were based on small, homogenous population sizes, affecting the
applicability to the general population. Additionally, several of the studies were retrospective or
exploratory in nature. This may have led to a biased interpretation of situations, which would
have been based on personal memories, and cannot be used in isolation to determine traits for the
general population, or all families of children with suspected ASD. Additionally, parents of
children with ASD in these interviews were chosen in a voluntary manner, and it is possible that
this population have certain qualities or perspectives on PCPs and the health care system that do
not reflect the views of the wider population. The interviews done in several of the studies were
often parent-focused, and did not provide PCP insight into factors. These studies may not have
considered situations where PCPs may initiate concerns, but are dismissed by parents. It is
therefore difficult to assess which scenario may be more common, or how to assist these parents
when PCPs find themselves in these situations.

73

Future directions in research. In consideration of the limitations of this review, several
recommendations for future directions in research are proposed. Future directions for research
include:
•

Repeating studies on larger population sizes with wider demographics

•

Encouragement of Canadian research initiatives on these populations

•

Developing research that is focused on the PCP experience when ASD is suspected

•

Developing research methodology that explores the efficacy of PFCC for children with
suspected ASD and their families within a framework of patient-oriented research

•

Determining prospective studies of more specific strategies and educational interventions
that appropriately address parent issues during the waiting period of their child’s ASD
diagnosis

74

Conclusion
This integrative review sought to answer the question: “What are primary care strategies for
supporting the parent(s) of children aged 18-36 months with suspected ASD?” An integrative
review using Whittemore and Knafl’s (2005) methodological rigour identified ten studies. Two
overarching themes were highlighted. Knowledge on ASD and communication were the key
themes identified in supporting parents and children.
This study provides insight for PCPs on the service provision challenges and facilitators
that parents experience when their child is suspected of ASD and awaiting diagnosis. Parents
often experience feelings of fear, isolation and frustration during this waiting period of time.
These feelings continue after diagnosis as parents are overwhelmed by new information and
service limitations, and poor communication with their PCP can influence future care for their
child. PCPs that engage with parents of children with suspected or newly diagnosed ASD form
collaborative, positive, and long-lasting relationships that can positively influence the child’s
access to services and care.
In consideration of the many demands of daily clinical practice, the PCP is not expected
to be an expert or primary care coordinator in ASD management. However, this review calls
upon PCPs with vested interests in this population to be alert to the experiences of parents during
the anticipatory waiting period of their child’s suspected ASD diagnosis, and to serve as a source
of emotional and educational support. As parents become the experts in their child’s care, the
PCP can act as a translator of information for parents following diagnosis, and provide navigation
for community resources. Furthermore, the PCP can maintain connection between fellow
multidisciplinary team members, act as advocate for system-wide and organizational changes,
and finally promote the provision of equitable PFCC practices. These strategies improve the
parent-PCP relationship, and may eventually influence the improvement of early referral,
75

diagnosis or intervention for ASD, in effect improving the quality of life for children with ASD
and their families.

76

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Constantino, J., Dawson, G., Dobkins, K., Fein, D., Iverson, J., Klin, A., Landa, R.,
Messinger, D., Ozonoff, S., Sigman, M., Stone, W., Tager-Flusberg, H., … Yirmiya, N.
(2009). Clinical assessment and management of toddlers with suspected autism spectrum
disorder: insights from studies of high-risk infants. Pediatrics, 123(5), 1383-91.

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APPENDIX A: MODIFIED CHECKLIST FOR AUTISM IN TODDLERS, REVISED

85

APPENDIX B: CONCEPT MAP

86

APPENDIX C: LITERATURE SEARCH BOOLEAN COMBINATIONS
Search Combinations
Search #1: November 24, 2017
(Primary Care OR family physician OR nurse practitioner)
AND
Autism Spectrum Disorders
AND
(Screening or Surveillance)
= 240 results ==> used 5 articles - (Barbaro, Carbone & N, Garg, Monteiro, Rhoades)
Search #2: December 26, 2017
(Primary care OR family physician OR nurse practitioner OR paediatrician OR professionalfamily relations)
AND
Autism Spectrum Disorders
AND
(Referral OR Diagnosis OR Intervention)
AND
(Parent or family or caregiver)
= 454 results ==> used 5 articles (Carbone &B, Bloch, Hennel, Feinberg, Mulligan)
Other engines searched December 8, 2017:
Cochrane: 28 = 0
Clearinghouse: 2 guidelines; Canada Task Force and NICE = 0 used (neither really discuss
parent/PCP relationship or strategies)
Joanna Briggs: 0
Grey Literature searched December 8, 2017:
BC Guidelines
Support websites:
Autism Information Services BC
Autism Society of BC
Autism Support Network
BC Autism Assessment Network (BCAAN)
Children and teens with special needs
Family Support Institute
Pacific Autism Family Center
Provincial Outreach Program for Autism and Related Disorders --> for schools
SET BC -> for schools
American Academy of Pediatrics and Canadian Pediatric Society
Patient education & Counselling Journal

87

APPENDIX D: CRITICAL APPRAISAL SKILLS PROGRAMME CHECKLISTS
Cohort Study
Section A: Are the results of the study
valid?
1. Did the study address a clearly focused
issue?
2. Was the cohort recruited in an acceptable
way?
Is it worth continuing?
3. Was the exposure accurately measured to
minimize bias?
4. Was the outcome accurately measured to
minimize bias?
5. a) Have the authors identified all important
confounding factors?
b) Have they taken account of the confounding
factors in the design and/or analysis?
6. a) Was the follow up of subjects complete
enough?
b) Was the follow up of subjects complete
enough?
Section B: What are the results?
7. What are the results of the study?
8. How precise are the results?
9. Do you believe the results?
Section C: Will the results help locally?
10. Can the results be applied to the local
population?
11. Do the results of this study fit with other
available evidence?
12. What are the implications of this study for
practice?

Randomized Control Trial
Section A: Are the results of the study
valid?
1. Did the study address a clearly focused
issue?
2. Was assignment of patients to
treatments randomized?
3. Were all of the patients who entered the
trial properly accounted for at its
conclusion?
Is it worth continuing?
4. Were patients, health workers and study
personnel ‘blind’ to treatment?
5. Were the groups similar at the start of
the trial?
6. Aside from the experimental
intervention, were the groups treated
equally?
Section B: What are the results?
7. How large was the treatment effect?
8. How precise was the estimate of the
treatment effect?
Section C: Will the results help locally?
9. Can the results be applied to the local
population, or in your context?
10. Were all clinically important outcomes
considered?
11. Are the benefits worth the harms and
costs?

Qualitative Study
Section A: Are the results of the
study valid?
1. Was there a clear statement of the
aims of the research?
2. Is a qualitative methodology
appropriate?
Is it worth continuing?
3. Was the research design appropriate
to address the aims of the research?
4. Was the recruitment strategy
appropriate to the aims of the research?
5. Was the data collected in a way that
addressed the research issue?
6. Has the relationship between the
research and participants been
adequately considered?
Section B: What are the results?
7. Have ethical issues been taken into
consideration?
8. Was the data analysis sufficiently
rigorous?
9. Is there a clear statement of
findings?
Section C: Will the results help
locally?
10. How valuable is the research?

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APPENDIX E: LITERATURE MATRIX
Author, Year, Country, Title
(Barbaro & Dissanayake, 2009)

Study Design and Summary
Prospective cohort study

Victoria, Australia

Nurses with previous
knowledge of developmental
milestones trained in ASD and
at well-child visits put at-risk
kids into closer surveillance

Prospective identification of
autism spectrum disorders in
infancy and toddlerhood using
developmental surveillance: The
social attention and
communication study.
(Bloch & Gardner, 2007)

Key Recommendations & Implications for PCP Role
Additional training on ASD using a health care model for
providers across multidisciplinary team with previous
child development knowledge effective in improved
surveillance

Limitations
Public health nurses were
participants in study; consider
feasibility on PCP practice

Repeated surveillance increased accuracy of identifying
ASD at 18 or 24 months

Australia-based healthcare
system, potentially different
variables than Canada

Participants: 22,168 children,
241 nurses
Exploratory descriptive
qualitative study

Registry effective for closer monitoring children who have
missing or atypical developmental milestones
Parents feel dismissed regarding initial concerns regarding
their child’s symptoms

Homogenous, small sample
size

Looks at burdens caregivers of
new ASD dx face and how
NPs/PCPs can help

Parents feel emotional distress when not heard and when
feeling PCP unaware of the challenges they face with ASD
within family

Participants: 6 mothers of
children with ASD

Parents feel there is not enough time during appointments
to properly assess their child or listen to all concerns

USA
Accessing a diagnosis for a child
with an autism spectrum disorder:
the burden is on the caregiver

Retrospective study, may
result in recall bias
Older article, greater than 10
years old
US-based healthcare system,
potentially different variables
than Canada

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Author, Year, Country, Title
(Carbone, Behl, Azor & Murphy,
2010)
Salt Lake City, Utah
The medical home for children
with autism spectrum disorders:
parent and pediatrician
perspectives

Study Design and Summary
Qualitative focus group
Looks at gaps perceived by
both parents and physicians of
children with ASD in a
metropolitan population
Participants: 5 parents, 9
pediatricians

Key Recommendations & Implications for PCP Role
Parents want PCPs to have knowledge on red flags,
specialist referrals, medications, and be open to
complementary alternative medicine discussions
For parents, early negative experiences...strongly
influenced future interactions; parents will change
providers based on initial experiences regarding their
child’s diagnosis
Parents wish providers conversation around stress and
coping, often experiencing financial strain and information
overload

Limitations
Retrospective study, may
result in recall bias
Small sample size,
homogenous group from
specialized ASD school
US-based healthcare system,
potentially different variables
than Canada

Parents likely to seek out informal parent-parent support
rather than PCP support
Parents are not aware of what a medical home can offer.
Pediatricians found it beneficial to have an in-office care
coordinator, or some form of a health care model
improving multidisciplinary collaboration and
coordination
(Carbone, Norlin & Young,
2016)

Quantitative: quasiexperimental (cohort)

Utah, USA

Strategies implemented with
aim to increase screening for
ASD and providing care for
children with ASD in rural
and urban multidisciplinary
clinic settings

Improving early identification
and ongoing care of children with
autism spectrum disorder

Participants: 20 pediatric and
6 family practice teams: at
least 1 physician, nurse/MOA,
office manager & parent of
child with ASD

Learning collaborative strategies over 3-6 months
increased PCP knowledge of ASD needs and associated
conditions

Strategies may fall short if
community resources are
unavailable

Creation of a registry of patients requiring follow up
evaluation streamlined scheduling/appt set up specifically
for children with special needs

Doesn’t describe what the
role of each participant is?

Such learning strategies with the multidisciplinary team
effective in team collaboration and community service
connection
Educational opportunity improved use of screening tools
as well as perceived PCP self-efficacy even up to 4 years
later

Post-surveys only include
physicians
US-based healthcare system,
potentially different variables
than Canada

90

Author, Year, Country, Title
(Feinberg et al., 2016)

Study Design and Summary
Quantitative: Randomized
control trial

USA
Reducing disparities in timely
autism diagnosis through family
navigation: Results from a
randomized pilot trial

Feasibility of family
navigation (FN) to improve
timely diagnosis of ASD in
low-income families from
racial-ehnic minority groups
Participants: 39 children
suspected of ASD

Key Recommendations & Implications for PCP Role
Children within family navigation (FN) program more
likely than children who receive routine clinic care to
complete an ASD diagnostic assessment

Limitations
FN strategies not clearly
detailed

FN addressed structural and family barriers that impeded
timely diagnosis

FN may not be a feasible role
expectation of the PCP or if
resources are limited

FN focused on the needs of the family, including a broader
scope of addressing navigating the medical system,
community and educational barriers

US-based healthcare system,
potentially different variables
than Canada

FN explored understanding of ASD, identifies barriers &
community resources, and completing necessary
documentation
FN required the addition of other multidisciplinary team
members, however addressed issues of role clarity within a
focused model of care

(Garg, Lillystone, Dossetor,
Kefford & Chong, 2014)
New South Wales, Australia
An exploratory survey for
understanding perceptions,
knowledge and educational needs
of general practitioners regarding
autistic disorders in New South
Wales (NSW), Australia

Mixed methods Study
Survey for understanding
perceptions, knowledge and
educational needs of general
practitioners regarding autistic
disorders
Participants: 1185 GPs; 734
urban, 237 regional, 214
rural/remote

There was more response from female GPs, Australian
medical graduates and those with an interest in mental
and/or child health.
Variability was noted in how GPs perceived their
competence and knowledge of autistic disorders.

Low specificity/sensitivity in
a true/false survey
Australia-based healthcare
system, potentially different
variables than Canada

Self-directed learning was considered paramount in
obtaining ASD knowledge
Knowledge was inversely related to the number of years in
practice and enhanced by personal involvement with
children of these disorders and awareness of community
resources.
GP concerns include lack of role and pathway clarity, long
wait times, and lack of adequate services in rural areas

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Author, Year, Country, Title
(Hennel et al., 2016)

Study Design and Summary
Descriptive/Cross-Sectional
Study

Key Recommendations & Implications for PCP Role
Pediatricians do not feel they have enough time to provide
information on ASD at time of diagnosis

Limitations
Retrospective study, may
result in recall bias

Parent-PCP surveys
comparing
experience/preference/importa
nce of diagnosis delivery,
information at delivery and
information after delivery

Parents often don’t remember information provided at time
of diagnosis; particularly information on the education
system, support groups, funding or allied health
professionals

Australia-based healthcare
system, potentially different
variables than Canada

Australia
Diagnosing autism:
Contemporaneous surveys of
parent needs and paediatric
practice: Parent needs at autism
diagnosis

Participants: 404 families,
43 pediatricians

Internet resources are highly accessed by families at the
time of and after diagnosis
Parents find allied health providers more helpful in
providing information on ASD
Majority of families use CAM therapy with their child, yet
do not receive information on this at time of diagnosis
Parents had a better experience receiving information at
the time of diagnosis with a support person present or with
written & spoken information

(Monteiro et al., 2015)

Retrospective cohort
study/Chart review

USA
Early intervention before autism
diagnosis in children referred to a
regional autism clinic

Determining the prevalence of
receipt of early intervention
and therapeutic services in
children before their ASD
diagnostic evaluations.
Participants: 561 children

PCPs who are informed about ASD are more confident in
referring children for early intervention and therapeutic
services while awaiting diagnosis – formal diagnosis is
therefore not necessary to initiate intervention
Supporting appointments with written information may
empower parents to start early intervention

US-based healthcare system,
potentially different variables
than Canada
Higher than average sociodemographics among patient
participants, potential for bias
Causes for early intervention
suggested but no obvious
correlation; challenging to
repeat study findings

92

Author, Year, Country, Title
(Mulligan, MacCulloch, Good &
Nicholas, 2012)
Ontario, Canada
Transparency, hope, and
empowerment: A model for
partnering with parents of a child
with autism spectrum disorder at
diagnosis and beyond

Study Design and Summary
Phenomenological study
Experiences of parents
experiencing ASD diagnosis
of their child, with a
protocol/clinical guidelines for
providers to support them
throughout the experience
(what to share, how to share,
when to share)
Participants: 10 parents (8
mothers, 2 fathers)

Key Recommendations & Implications for PCP Role
Parents experience a number of emotions from the time of
initial concern up to and following diagnosis. These
include:
- Fear and helplessness prior to diagnosis
- Relief with diagnosis, especially if given prognosis
through a hopeful lens
- Feeling overwhelmed with information, desiring followup for questions after initial conversation
- Frustration with lack of resources, waitlists, and
dismissal of their own expertise

Limitations
SW perspective (not PCP)Retrospective study, may
result in recall bias
Other participant bias:
Parents in survey had preexisting knowledge or high
levels of education

Parents require information on ASD through biomedical
and sociopolitical spheres, inclduing: Service availability,
their role in their child’s care, timeliness of intervention,
and available funding
Parents benefit from written and spoken information as
well as repeated interactions to allow for follow-up
questions and continuing dialogue into their child’s care

(Rhoades, Scarpa & Salley, 2007)

Descriptive/Cross-Sectional

Virginia, USA

Online survey of parents
observing age of diagnosis,
information received at
diagnosis, and sources that
parents use to seek ASD
information

The importance of physician
knowledge of autism spectrum
disorder: Results of a parent
survey

Participants: 146 parents of
children with ASD

Most parents say they receive information on ASD or
resources at time of diagnosis, however most turn to media
(internet, books, videos), conference/workshops or other
parents for primary sources of information

US-based healthcare system,
potentially different variables
than Canada

Often resources are very limited, leaving little for PCPs to
refer to – however identification is better than nothing, and
the PCP can act as a lobbying advocate

Convenience sample: Selfselecting for online survey,
possibility that populations
accessing website have
similar biases

PCPs have the knowledge needed to guide parents on
understanding the abundance of information on ASD and
can support parents to choose interventions that are
evidence-based or empirically supported

No information on level of
training of professionals.

93