THE IMPLEMENTATION OF A FAMILY EDUCATION PROGRAM
BY THE BRITISH COLUMBIA SCHIZOPHRENIA SOCIETY

by
Heather Jane Dereth Baxter
B.Sc., University of Waterloo, 1976

THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SCIENCE
in
COMMUNITY HEALTH SCIENCE

© Heather Jane Dereth Baxter, 2001
THE UNTVERSriY OF NORTHERN BRITISH COLUMBIA
September, 2001

All rights reserved. This work may not be
reproduced in whole or in part, by photocopy
or other means, without the permission of the author.

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APPROVAL
Name:

Heather Jane Dereth Baxter

Degree:

Master of Science

Thesis Title:

THE IMPLEMENTATION OF A FAMILY EDUCATION
PROGRAM BY THE BRITISH COLUMBIA
SCHIZOPHRENIA SOCIETY

Examining Committee:

Chair: lyr. Leslie King
Regional Chair & Program Co
UNBC

ator - Northwest Region

SupervY^r: Dr. Kenneth Prkachin
Professor, Psychology Program
UNBC

/
Committee Member: Dr. Alex Michalos
Professor Emeritus, Political Science Program
UNBC

Corhrrmtee Member: Dr. Elizabeth Lockhart
Adjunct Professor, Community Health Science Program
UNBC

External Examiner: Dr. Nicole Chovil
Staff, Branch & Community Support Co-Ordinator
BC Schizophrenia Society (Richmond, BC)

Date Approved:

Abstract
The thesis describes the formative, improvement-focused evaluation of the implementation
of the National Alliance for the Mentally HI Familv-to-Familv education program by members of
the British Columbia Schizophrenia Society. Using a case study approach, this thesis analyzes the
Familv-to-Familv education program materials and archives, key informant interviews, and content
of the records of the British Columbia Schizophrenia Society Regional coordinator in northwest
British Columbia. The data collected was used to evaluate the implementation of the Familv-toFamilv education program. From the analysis, actions were recommended to improve the
implementation of the program as follows:
•

to clearly state the goals, philosophy, and outcomes of the Familv-to-Familv education
program in the introductory chapter of the program

• to develop more strategies for educators working in remote areas
• to use the profile developed in this thesis for the recruitment of volunteer family educators
• to use the recommended Implementation Fidelity Index developed in this thesis
• to use the recommended Augmentation Index developed in this thesis
• to thoroughly plan the implementation of all new programs
• to use the Checklist for Program Approval for the British Columbia Schizophrenia Society
Board of Directors and staff, developed in this thesis
•

to ensure that the Familv-to-Familv education program be funded as a core program by the
Northwest Community Services Society

• to develop a “made in Canada” family education program
• to explore the needs of family members of First Nations ancestry
• to create a professional milieu of acceptance of appropriate family involvement in the lives of
individuals with a mental illness by incorporating family involvement into the job descriptions
of community and hospital based mental health employees.

111

TABLE OF CONTENTS

ABSTRACT

11

TABLE OF CONTENTS

111

ITST OF TABLES

VI

LIST OF FIGURES

Vll

ACKNOWLEDGEMENTS

Vlll

Chapter One

Introduction

1

Chapter Two

Mental Health System In British Columbia
Definitions of Mental Illness
The Mental Health System
Role of BCSS in the Mental Health System
Role of Family in the Mental Health System

9
9
11
12
17

Chapter Three

Literature Reviews
Voluntary Organizations and Their Role in
Health Service Delivery
Family Education
Relapse Prevention as an Outcome of Psychoeducation
Other Outcomes of Family Education
Review of Research on Families of Psychiatric Patients
Families not in Contact with Their Relative with a
Mental Illness
Cultural Perspectives in Mental Illness
Factors Affecting Program Implementation in Health
Education Programs
Evaluation of Program Implementation
Implementation Issues

20

Chapter Four

Family-To-Family Education Program
Description of the Familv-to-Familv Education Program
Outcomes of the Familv-to-Familv Education Program
Program Selection and Early Implementation of the
Familv-to-Familv Educ ation Program
Phase I of the Familv-to-Familv Education Program
Phase n of the Familv-to-Familv Education Program

20
23
41
42
43
44
44
46
52
52
70
74
79
81
82
85

IV

Program Management Mechanisms

88

Chapter Five

Methodology
Analysis Plan

92
97

Chapter Six

Implementation
Plan for Implementation of the Familv-to-Familv
Education Program in British Columbia
Facilitators of the Program Implementation in
Northwest BC
Community Outreach Strategy
Pre-Course Family Visit Strategy
Program Content
Barriers to the Program Implementation in Northwest
BC
Systemic Misunderstanding of the Program
Funding Barriers
Volunteer Burnout
Complexity of the Language of the Program
Geographical Isolation and Distances to Travel

98

109
109
111
112
113
114

Chapter Seven

Participants and Non-Participants
Trained Family Educator Participants
The Need for Mentorship
Training more Volunteers
Support Group Facilitator Training
Education Program Participants
Non-Participants

115
115
116
117
117
118
122

Chapter Eight

Analysis
Discussion of Implementation
Augmentation of the Familv-to-Familv Education
Program
Unplanned Effects from the Delivery of the
Program
Gaining Acceptance
Task Specification and Resource Estimation
Project Management Mechanism

125
125

Chapter Nine

Recommendations
General Recommendations
Recommendations to the Familv-to-Familv Program
Developers
Recommendations to the BC Implementors
Recommendations to the Implementors in Northwest
BC

98
105
105
107
108

126
129
131
133
134
136
136
137
144
144

Chapter Ten

Bibliography

Recommendations to the Board of Directors of BCSS
Recommendations to Northwest Community Health
Services Society

145

Conclusions
Future Research
Conclusions

149
150
152

147

156

VI

LIST OF TABLES

Table 2.1:

Brochures, Fact Sheets, and Videos Produced by BCSS

15

Table 3.1:

Literature Review of Family Education and Psychosocial Needs

26, 27

Table 3.2:

Ranking of Symptoms Causing Family Burden as Perceived
by Family Members of Individuals with Bipolar Disorder and
by Professionals

35

Ranking of Symptoms Causing Family Burden as Perceived
by Family Members of Individuals with Schizophrenia and
by Professionals

36

Table 3.4;

Literature Review for Program Implementation

53, 54

Table 4.1:

Education Courses Available for Consumers and/or
Family Members

71

Table 4.2:

Elements in the Nuts and Bolt Chapter

84

Table 4.3:

Familv-to-Familv Education Program Content

86

Table 4.4:

Familv-to-Familv Program Principles of Support

87

Table 8.1:

BCSS Fact Sheets added to the Familv-to-Familv Education
Program

128

Table 3.3:

Vll

LIST OF FIGURES

Services Consumed by and Community and Social Interactions
of Individuals with Mental Illness

10

Figure 3.1:

A Community Development Health Planning Model

48

Figure 6.1;

Time Line for the Implementation of the Familv-to-Familv
Education Program Phases 1, and 2

102-4

Figure 9.1;

Profile of a Voluntary Family Educator

139

Figure 9.2;

Implementation Fidelity Checklist for the Familv-to-Familv
Education Program

142

Augmentation Index for the Familv-to-Familv Education
Program

143

Checklist for Approval of Programs

146

Figure 2.1:

Figure 9.3:

Figure 9.4;

V lll

ACKNOWLEDGMENTS
A grateful acknowledgment is extended to my thesis supervisor, Dr. Ken Prkachin,
who gently guided me through my thesis preparation.
Further appreciation is extended to my thesis committee members Dr. Betsy
Lockhart, Dr., Alex Michalos, and Dr. Nicole Chovil, British Columbia Schizophrenia
Society.
A special acknowledgment is extended to the members, staff, and board of directors
of the British Columbia Schizophrenia Society. Their contributions to this thesis were
invaluable, specially Eileen and Jim Callanan.
Without the strength, determination, and innovation shown by the late Elaine
Preston and Margaret de Lange, this project would have never occurred. Therefore, I
dedicate this thesis to the memory of Elaine Preston and in the honour of Margaret de
Lange.
Acknowledgments are also extended to Joyce Borland, the developer of the
National Alliance for the Mentally El Familv-to-Familv Education Program.
Grateful acknowledgments are also extended to my fellow classmates in the Terrace
cohort and my friends who supported me through graduate school. Heather Hayes and
Stacey Lopsten baby-sat my children on many occasions while attending classes. Thank
you.
Special thanks are extended to my husband, Doug Wilier, children Garion and
Donal Wilier for their support during my tenure as a graduate student. Also, I thank my
late parents, Anna and Tom Baxter, for instilling in me the love of learning, which enabled
me to go to graduate school at this stage in my life.

Chapter 1

Introduction

Serious, disabling psychiatric illnesses pose complex and diverse challenges for the
health care system, health care providers, voluntary health organizations, the individuals
with these illnesses, and their families. One of the more common and most disabling of
these afore-mentioned conditions is schizophrenia, a complex disorder involving
disturbances of thought and language, emotion and behaviour (American Psychiatric
Association, 1994). The lifetime prevalence of schizophrenia is 1% of the population
(Youth’s Greatest Disabler, 1999). Many of the symptoms of schizophrenia can be
controlled with medication, but patients are often left with considerable residual disability,
which requires ongoing support from mental health system, family, and society at large.

As with other health conditions, the problems associated with schizophrenia have
given rise to voluntary organizations whose mandates encompass various aspects of this
disorder, including advocacy and fund raising for the purposes of research and easing the
burden of the disorder. As families are both affected by and play a prominent role in
providing support for the affected individual, the provision of services for families
appropriate to the role of voluntary organization, is an important function for these
organizations.

This thesis deals with the implementation by the British Columbia Schizophrenia
Society (BCSS) of an education program for families of patients with schizophrenia and
other significant psychiatric illnesses. The Familv-to-Familv education program (formerly

called the Journey of Hope) encompasses the philosophy of family empowerment through
self-education by improving knowledge, skills, comprehension, and support (Burland,
1998, undated). The program has three goals. The first goal is to empower families
through self-education (Burland, 1998, undated). The second goal is to prevent traumatic
impact of mental illness in their family from further undermining family members’ stability
and compromising their effectiveness as long term caregivers (Burland, 1998, undated).
The third goal is to promote personal healing and restoration (Burland, 1998, undated).
This thesis follows the introduction and implementation of the Familv-to-Familv education
program in British Columbia over a period stretching from 1993 to June, 1999. The
process of advocacy, adoption, and implementation of this program appeared to provide an
opportunity to explore some of the important forces that affected the adoption of the
program by BCSS.

A specific focus of this thesis is the implementation of the program in northern
British Columbia. Implementation of a program in a geographic locale characterized by
sparse population, great distances between small communities, cultural diversity, and
extreme climatic conditions raises special challenges that may provide insight into ways to
improve the program or affect organizational policy. As the author of the thesis was
responsible for implementation of the program in northwest BC, the opportunity to
undertake a case study of this nature appeared to be providential.

Health care in Canada is provided by a mix of publicly administered and funded,
and non-profit community based voluntary organizations. The delivery of specialized

health care programs by non-profit voluntary agencies is often done in partnership with the
formal or government funded health care system. Usually the specialized service programs
delivered by these voluntary organizations supplement services provided by the formal
health care system through provision of extra services. The focus of the non governmental
organizations is directed towards service delivery to groups affected by a specific disease,
health condition or cluster of conditions.

Volunteer organizations face considerable challenges when implementing programs
in rural and remote areas in Canada. The significance of looking at the experience of
BCSS with the Familv-to-Familv education program is reinforced by the findings of the
Report of the Northern and Rural Task Force, a body set up in 1994 by the BC Ministry of
Health to “determine the health needs of residents of remote and rural communities and
identify creative and feasible ways to address those needs"(1995, p.3). The report outlines
the characteristics often found in rural and remote communities in British Columbia that
affect the delivery of programs in these areas:
•
•
•
•
•
•
•
•
•
•
•

small population centres distributed over large areas
a single resource base with marked vulnerability to changes in the economy
relatively large distances between small communities and larger centres of
population
geography and climate are a strong influence on daily life
there are large and growing aboriginal populations, often actively engaged in
treaty negotiations
predominantly young populations
significantly increasing numbers of elderly residents who are no longer able to
or interested in retiring in southern urban areas
difficulty in gaining access to health, education and social services based in
urban centres
lower [than] average levels of schooling
limited pools of people for leadership positions
a practice of competing with other rural communities for scarce resources - to
the detriment of regional planning (1995, pp. 7-8)

Many voluntary organizations include family members as their primary focus or
part of their focus for education. The BCSS is consistent with this trend in providing
services to family members of individuals with schizophrenia and other related illnesses
(BCSS Minutes of Board Meeting, Jan. 1999). As resources for health care diminish,
families become primary caregivers for people suffering from many specific diseases or
disorders. Schizophrenia appears to be a particularly clear example of this trend. As
primary caregivers, families face the task of providing supervision of medications,
monitoring of the patient’s recovery, physical and psychosocial care, and financial support.
These responsibilities create family needs that have resulted in the development of
education programs that teach families to be part of the treatment team.

Within the field of mental health service provision, education and intervention
provided to families of individuals with mental illness and the individual consumer are
referred to as bio-psycho-social education (van der Leer, 1998). It is the specific nature of
mental illness that contributes to the need for family education. The mentally ill family
member requires a carefully planned, safe social and physical environment that provides a
milieu for the recovery and the management of the individual’s social and physical
impairment caused by brain disorders. Family members need to be knowledgeable about
the illness and how to care for their relative. Due to the social stigma associated with
mental illness, families with mentally ill relatives face great challenges as shown in the
family education literature review section in chapter 3. Included among these challenges
are the following. There is a tendency of society to blame individuals with a mental illness
and their families for the illness. This is referred to as the ‘Blame and Shame’ syndrome

(Youth’s Greatest Disabler, 1999). Families and patients have to overcome the societal
view that mental illness is “...caused by childhood trauma, bad parenting, or poverty or the
result of any action or personal failure by the individual” (Youth’s Greatest Disabler,
1999). Thus, families need support in order to deal with the stigma.

The onset of schizophrenia most frequently occurs between the ages of 16 and 25,
when parents are often ready to let go of their responsibilities to their children. Thus,
parents may feel burdened by the obligation of providing care to a teenager or an adult
(Caldwell-Smith, 1990). Mental illness tends to be episodic in nature and these episodes
create added stress for the families involved (Torrey, 1995). Relatives with mental illness
are either treated on an out-patient basis through a mental health clinic and/or psychiatrist
or released from the hospital still suffering from non-acute but still ‘florid’ symptoms
(Burland, 1998). The family member with mental illness may show arrested development
based on the age of onset of the disease. Therefore, the individual may not follow the
“normal” life path of establishing relationships and entering the work force (Burland,
1998). Often people with mental illness use negative coping strategies to face their illness.
This maladaptive behaviour is often directed against their families and members of the
general public. This in turn causes a backlash against the individual and their families
(Burland, 1998). Diagnosis of mental illness is challenging. Often patients and families
live for extended periods of time without an accurate diagnosis and hence without a
treatment plan (Torrey, 1995). For all these reasons it is apparent that families of
individuals with severe and persistent mental illness need training to contend with the
impact of mental illness on their lives and the affected individual’s life.

The Familv-to-Familv education program was developed to fill the need to assist
families to become better informed about the illness (Burland, undated). It was targeted to
families and friends of individuals with schizophrenia, bipolar disorder, depressive
disorder, panic disorder, and obsessive-compulsive disorder (Burland, 1998). The Familvto-Familv education program has two phases. The first phase is the training of the
volunteer family educators and the delivery of a twelve-session bio-psycho-social
education program (Burland, 1998). The second is a family support group facilitator
training and support group delivery program. This program uses trained volunteers who
are also family members with parallel experience rather than professional health care
workers. These family members can provide experiential knowledge that usually is not
provided by professionals.

This thesis describes the implementation of the Familv-to-Familv education
program by one member and one staff member of the BCSS. In addition, implementation
issues particularly focusing in remote and rural regions are described. The rationale behind
exploring the implementation of the Familv-to-Familv education program is to perform a
formative evaluation of the program implementation, and to explore how innovation in a
non-govemmental health care organization can occur. This evaluation will concentrate on
the facilitators of and barriers to implementation process. This topic was chosen because
the researcher was the Northwest BC Regional Coordinator for the BCSS charged with the
task to implement the Familv-to-Familv education program. Thus, the researcher is an
active participant and bias is an issue which must be addressed.

This case study thesis will first approach the subject by describing the context in
which the implementation of the program took place. It encompassed the following:
•

an overview of the mental health system in British Columbia

•

a literature review of some voluntary organizations that provide family
education and support

• a literature review on the family educational and psycho-social needs
• a literature review on program implementation
• a description of the role of the BCSS in the Mental Health System
• a description of the role of the family in the Mental Health System

In the next section the Familv-to-Familv education program and its implementation
is described. This process of describing the implementation proved to be complex because
of the various levels of policy and decision making that took place within the structure of a
provincial voluntary organization. A significant factor that added to the complexity of
studying the program was the interpersonal relationships of volunteers within the
organization.

After the describing the program and its implementation, this study will evaluate
the implementation of the program in northwest British Columbia by examining:
•

the Familv-to-Familv education program

•

the implementation of the program in British Columbia

•

the characteristics of the facilitators of and barriers to implementation that were
encountered by the Northwest BC Regional BCSS Coordinator

•

the solutions found to overcome the barriers to implementation

•

the characteristics of the participants

•

the characteristics of the non-participants.

Next, this thesis will answer the analysis questions generated from the literature search.
The conclusion will summarize the improvement-focused recommendations targeted to the
program developers, program implementors, British Columbia Schizophrenia Society, and
the Mental Health System in northwest British Columbia.

Chapter 2

Description of the Mental Health System in British Columbia

The Familv-to-Familv education program was implemented by BCSS within the
broader context of province’s overall system of mental health service provision.
Understanding that context is crucial for interpreting many features of the program and its
implementation. Consequently, this chapter describes the provincial mental health system
focusing on the characteristics of mental illness, governmental and non-govemmental
systems that provide services, the roles of BCSS in the mental health system, and the roles
of the family in the mental health system. A systems summary is warranted because the
Familv-to-Fami 1v education program is delivered outside the formal health care system but
within the informal mental health system.

Definition of Mental Illness

Various definitions of mental illness can be found in the literature. In 1993 the
National Advisory Mental Health Committee in the United States defined severe mental
illness “as including disorders such as schizophrenia, schizo-affective disorder, manicdepressive disorder, autism as well as severe forms of other disorders such as major
depression, panic disorder and obsessive compulsive disorder” (cited in Torrey, 1997, p. 4).
The Riverview Hospital Replacement Project: North Project Planning Stage Functional
Program defined severe mental illness as “a clinically significant behavioural or
psychological syndrome or pattern that occurs in an individual and that is typically

Figure 2.1

Services Consumed by, a n d Community and Social Interactions of

Individuals with Mental Illness

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^

10

associated with either a painful symptom or impairment in one or more important areas”
(HPG, 1997, p. A-7). The Mental Illness and Violence Report defined severe mental
illness as “including conditions such as schizophrenia, major depressive illnesses,
substance abuse disorders and personality disorders” (Arboleda-Horez et al., 1996, p.2).
Burland defined mental illness as including disorders such as “schizophrenia,
schizoaffective disorder, bipolar disorder, severe depression, panic disorder, and obsessivecompulsive disorder” (1998, p. NB-1). For this thesis, Borland’s definition of mental
illness is used in order to match the definition used by the Familv-to-Familv education
program. Schizophrenia, schizoaffective disorder, bipolar disorder, severe depression,
panic disorder, and obsessive-compulsive disorder are described in the Diagnostic and
Statistical Manual-IV (American Psychiatric Association, 1994).

The Mental Health Svstem

The Mental Health system is a complex unification of inter-related governmental
and non-govemmental services with which individuals interact. Figure 2.1 is a graphical
representation of the numerous services that affect the health of a person with mental
illness. As can be seen in figure 2.1 that the BCSS and the family (the two subsystems that
are the focus of this thesis) represent a very small portion of the overall system. Both are
emphasized in large bold type. The arrows indicate a possible two-way interaction
between the client and the agency or agencies shown in the boxes.

11

Between the period 1993-1999, the formal Provincial Mental Health System was
comprised of two distinct portions: Adult and Child and Youth services. In 1993, both
systems were funded and managed though the Ministry of Health. Though a process of
health care reform, the funding and delivery system was changed. As of 1999, the
Ministry of Health funded the Adult system^ whereas the Ministry of Children and
Families funded and managed the Child and Youth system. Because British Columbia has
a significant number of individuals with First Nations ancestry, two other governments
may be involved in the delivery of mental health services as shown in figure 2.1. When
First Nations individuals have a mental illness and live on reserves, either First Nations
Governments or Health Canada delivers their mental health services.

Role of BCSS in the Mental Health Svstem

The British Columbia Schizophrenia Society (BCSS) is a community-based, non­
profit voluntary agency that provides a provincial network of peer support for the families
of people with schizophrenia or other serious mental illness. BCSS is affiliated with the
Schizophrenia Society of Canada and other provincial Schizophrenia Societies.

BCSS started in 1980, as a small group of people from Vancouver needing peer
support in the struggle to cope with mental illness in their family (Calder, 1988). Initially
called the BC Friends of Schizophrenics, this organization became a legal society in 1983
and was renamed BCSS. In 1984, BCSS became a registered non-profit organization.

’ Adult Mental Health services are managed and delivered by either Regional Health Boards or Community
Health Services Societies.
12

Over the years it has grown into a formal agency that fills a service niche unmet by the
formal mental health care system.

One role of BCSS in the mental health system is to advocate on behalf of families
for better services for individuals with schizophrenia or other serious mental illness (BCSS,
1997). An example of advocacy was the provincial initiative to influence the BC
government to proclaim Bill 22, the Amendments to the Mental Health Act, which was
passed in 1998, and later proclaimed in 1999.

A second role of BCSS is to provide regionally contracted support for and
empowerment of families of individuals with schizophrenia or other serious mental illness
(BCSS Schedule B Contract, 1995). Support is delivered on a one-to-one basis with the
BCSS coordinator or in a support group.

A third role is to provide regionally contracted community education through the
Partnership Education Program, Puppet Program and other educational programs (BCSS,
1997). The Partnership Education Program is a novel approach to community education
developed by Anne Bowles (Partnership Video, 1988). This education program is geared
to community groups and high school students (Partnership Public Education Program
brochure, undated). The education presentation consists of a panel of guest speakers:
persons with a mental illness; family members; and mental health professionals
(Partnership Public Education Program brochure, undated). The guests are presented as a
team, and each describes their own personal experience with mental illness (Partnership

13

Public Education Program brochure, undated). It is based on a personal story telling model
(Partnership Public Education Program brochure, undated).

The Puppet Partnership Program is geared to Elementary School students;
specifically, grade four/five students (Funding Proposal, 1999). The puppeteers are trained
family members and individuals recovering from a mental illness. This script entitled
“Brother, Where Are You?” is a play about four children. One of the children has a
sibling with symptoms of early psychosis. Using professionally made puppets and a script
from NAMI (Rochester, NY), the play deals with the debunking of stereotypic myths and
the understanding of key words associated with mental illness. In addition, the play
displays how children can deal empathetically with a person who has a family member
with mental illness.

A third BCSS education program the “Kids in Control Support Group Program”,
is an eight-session support group and education program targeted at “children aged eight to
thirteen years who have a parent with a serious mental illness” (Kids in Control Support
Group Program, undated). This program was jointly developed by the Ministry for
Children and Families and BCSS. Staff of BCSS believe that “these children face unique
challenges, and are at risk for social maladjustment and mental illness, they are an
appropriate group for this primary prevention program” (Kids in Control Support Group
Program, undated).

14

Table 2.1

Brochures, Fact Sheets, and Videos Produced by BCSS

Brochures

Medication Update

Youth’s Greatest Disabler Booklet

Get the Facts: Access to New

Youth’s Greatest Disabler Brochure

Medications for Schizophrenia = New

Schizophrenia is a Brain Disease

Hope

Drug, Alcohol, & Schizophrenia A Hazardous

Hospital Discharge Planning & Checklist

Road to Follow

Riverview Lands - The Future

Questions to Ask the Psychiatrist

Schizophrenia How to Manage Common

Schizophrenia in Children

Symptoms: Paranoia, Terror of being

Partnership Public Education Program

Psychotic, Denial of Illness, Stigma, &

Dr. Norma Calder Schizophrenia Foundation

Demoralization

BC Schizophrenia Society Branch Manual

Benefits of Extended Leave

Fact Sheets

Extended Leave, Community Treatment

Getting Satisfactory Results...Some D o’s

Orders, and Continuing Care

and Dont’s

Family Charter of Rights

Stages of Hallucinations

Recommended Reading Lists

Early Intervention

Videos Available for Borrowing

Steps for Working with Delusions

Videos Produced

Get the Facts: The Mental Health Act -

Reaching Out (Physician’s Version)

“The Right to Treatment and Care”

Reaching Out (School Version)

Get the Facts: Guardianship Legislation

One in One Hundred

and the BC Mental Health Act

15

In 1999, BCSS developed a high school cumculum in cooperation with Ministry of
Education and Ministry for Children and Families. The “Reaching Out” education
program is designed for EC ’s grade 11 Career and Personal Planning (CAPP) and is
suitable for grade 10,11, and 12 students. This program “has two fully supported lesson
plans and includes the background information [and videos] needed to teach this subject. It
was designed to be used by teachers who know little or nothing about schizophrenia or
mental illness”(Reaching Out Program ,1999).

BCSS delivers the National Alliance for the Mentally Ill’s (NAMl) Familv-toFamilv education program. In addition, BCSS delivers the BRIDGES education program
to individuals with a mental illness. Both programs are more fully described in Chapter 4.

A fourth role is to disseminate information about schizophrenia or other serious
mental illness (BCSS, 1997). BCSS publishes brochures, fact sheets, issues in treatment.
Mental Health Act, etc., has videos about schizophrenia for sale at a nominal cost recovery
basis (Branch Manual, 1999). A listing of these educational materials provided in Table
2 . 1.

A fifth role is to support research into schizophrenia or other serious mental illness
(BCSS, 1997). BCSS supports research, rehabilitation, and housing initiatives through The
Doctor Norma Calder Schizophrenia Foundation that acts autonomously from BCSS
though affiliated with it (Dr. Norma Calder Schizophrenia Foundation Brochure, undated).
The Calder Foundation complements the work of BCSS and was established in 1993 (Dr.

16

Norma Calder Schizophrenia Foundation Brochure, undated). The Calder Foundation in
cooperation with the Canadian Alliance for Research on Schizophrenia (CAROS) attempts
“to attract the most capable researchers to the field of schizophrenia” (Dr. Norma Calder
Schizophrenia Foundation Brochure, undated). The Calder Foundation provides
significant financial support for the Jack Bell Chair in Schizophrenia Research at the
University of British Columbia held by Dr. Peter Liddle (Dr. Norma Calder Schizophrenia
Foundation Brochure, undated).

BCSS delivers programs at the provincial, regional, and local levels throughout BC.
Programs are developed at the regional and provincial level by regional BCSS
coordinators, provincial office staff, and volunteer members of the BCSS Board of
Directors. Regional BCSS coordinators, according to their own implementation plans,
implement community and/or regionally specific internally generated programs. External
programs are dealt with differently by a more-or-less formal process. Proposals that
require Board of Director approval are submitted to the Executive Committee. The
Executive Committee’s response is forwarded to the full Board of Directors. After
discussion, the board of directors determines whether the proposal is supported or rejected.

Role of the Familv in the Mental Health Svstem

Family members of individuals with a mental illness have a role in the mental
health system. In British Columbia, there is no estimate of the numbers of families
providing a care-giving role of family members with mental illness; however, in the United

17

States, Lamb and Oliphant (1978, cited in Spaniel, et al., 1987) estimate that as many as
66% of deinstitutionalized patients are returned to their families. Giving statistics from the
United States, Goldman said that “of the estimated 375,000 patients with severe mental
illness discharges annually, 250,000 persons suffering from mental illness are returned to
their families” (1982, cited in Spaniol, et al., 1987, p. 77). If Canadian trends resemble
American trends, it can be conservatively estimated that more than 50% of individuals with
mental illness live with their families.

Family members provide a myriad of informal care services to their afflicted
relatives. Families have a role in the diagnosis of mental illness by providing collateral
information. They provide home care, monitor and dispense medications, assist in
financial planning, support, rehabilitation, and relapse prevention for the ill relative.
Where family members provide the above services, paid mental health professionals do
not.

The report. Sharing the Caring, concluded that as caregivers, family members want
involvement in treatment planning, and recognition as “equals in the provision of care to
their relatives with mental illness” (Ministry of Health, 1993, p.9). This report is
discussed in greater detail in chapter 3. Family members often provide these support
services out of love and compassion for relatives with a mental illness. Because family
members provide informal care services, families need support, understanding, training,
and education from the mental health system (Ministry of Health, 1993). As well, families
often require counseling to assist them in their roles as caregivers (Ministry of Health,

18

1993). The report, Sharing the Caring, also concluded, “emotionally and financially,
[families] are often drained by the stresses of having to care and advocate for their loved
ones” (Ministry of Health, 1993, p. 8). Too often family members themselves become
consumers of the mental health system because they are unable to cope with the realities of
having a relative with mental illness.

19

Chapter 3

Literature Reviews

Voluntary Organizations and Their Role in Health Service Delivery

As of January 1997, there were “19,000 volunteer and community service
organizations registered under the [British Columbia] Society Act” (Ministry of Human
Resources, 1999, p.5). An unknown number of these organizations provide disease or
condition specific information and services. In the National Survey of Giving,
Volunteering, and Participating (1998, cited in Ministry of Human Resources, 1999), 32%
of BC residents who were more than 15 years old volunteered their time and skills. They
gave 169 million hours of work, which is an equivalent to 88,000 full-time-equivalent
positions. This volunteer effort in mm is estimated to be equal to 2.7 billion dollars in
wages. From these figures, it can be concluded that the work of volunteers significantly
reduces expenditures in the formalized health care system because volunteers perform
duties that paid service providers do not. Additionally, volunteers often provide services
that could be funded; however, there are insufficient funds in the health care system to
finance these afore-mentioned services.

A review of voluntary organizations that provide disease or condition specific
education and family support was performed because the Familv-to-Familv education
program is delivered by a voluntary non-profit organization. The voluntary organizations
chosen for this literature review were the Alzheimer Society of British Columbia, the
Canadian Diabetes Association (BC Division), the Canadian Cancer Society (BC
Division), the Family Support Institute, and the British Columbia Schizophrenia Society

20

(BCSS). These organizations were chosen because they focus on family education and
support as an integral part of or their entire service delivery pattern and because many of
these organizations use trained volunteers to deliver their programs. The literature review
focused on common service provision patterns using educational materials, voluntary
organization pamphlets, archival information, and administrative reports.

The organizations chosen for this review reflect the differences in organizational
structures that occur in voluntary agencies. Even though, the five organizations are
registered under the Society Act; they are named a society, institute, or association. Two of
the organizations, Canadian Cancer Society and Canadian Diabetic Association, are
national organizations with provincial chapters or divisions, whereas, the BC
Schizophrenia Society and Alzheimer Society of BC are provincial organizations that are
loosely affiliated with national organizations. The Family Support Institute is a provincial
organization only. A Board of Directors governs each organization. Additionally, for all
of these organizations, signing authority is limited to the Board of Directors and the
Executive Director of the provincial organization. In the case of the BCSS, signing
authority for branches incorporated under the Society Act is within the branch structure.

These voluntary organizations in the review commonly provide:
1. Disease specific community education and prevention strategies. (Alzheimer
Society BC, 1994, BCSS, 1994, Canadian Cancer Society, 1996, Canadian
Diabetes Association, undated, Family Support Institute, undated)

21

2. Advocacy. (Alzheimer Society BC, 1994, BCSS, 1994, Canadian Cancer
Society, 1996, Canadian Diabetes Association, undated. Family Support
Institute, undated)
3. Training and/or education for the person suffering from the health concern.
(Alzheimer Society BC, 1994, BCSS, 1994, Canadian Cancer Society, 1996,
Canadian Diabetes Association, undated)
4. Support for the caregivers or family members of the person suffering from the
health condition. (Alzheimer Society BC, 1994, BCSS, 1994, Canadian Cancer
Society, 1996, Canadian Diabetes Association, undated. Family Support
Institute, undated)
5. Advocacy, raise funds for, and assist in establishing priorities for research into
the condition. (Alzheimer Society BC, 1994, BCSS, 1994, Canadian Cancer
Society, 1996, Canadian Diabetes Association, undated)
6. Encouragement in fund raising activities and strategies. (Alzheimer Society BC,
1994, BCSS, 1994, Canadian Cancer Society, 1996, Canadian Diabetes
Association, undated)
7. Encouragement of volunteerism. (Alzheimer Society BC, 1994, BCSS,
undated, Canadian Cancer Society, 1996, Canadian Diabetes Association,
undated. Family Support Institute, undated)
8. Training of volunteers. (Alzheimer Society BC, 1994, BCSS, undated,
Canadian Cancer Society, 1996, Canadian Diabetes Association, undated.
Family Support Institute, undated)

22

As stated in chapter one, most of these organizations include family members as
either their primary focus or part of their focus for education. The following examples
show where the education of families of individuals suffering from a specific disease or
cluster of conditions fits into a society’s program delivery. The Alzheimer Society of
British Columbia (1994) “.... provides information about Alzheimer Disease and related
dementias to:.... people who are providing care to individuals with a dementia.” “The
Canadian Diabetes Association (undated) is Canada’s primary source of authoritative
information for people with diabetes and their families.” The Canadian Cancer Society
mentions supporting cancer patients and their families (Canadian Cancer Society, 1996).
However, specific education programs aimed at family members are not mentioned as a
focus in the literature published by the British Columbia and Yukon Division of Canadian
Cancer Society. The Family Support Institute (1995) “...provides information, training,
and province-wide networking to assist families [of children with special needs].” The
British Columbia Schizophrenia Society (BCSS Constitution, 1994, Minutes of Board of
Directors Meetings, Jan. 16,1999) “.... provides support for families of persons suffering
with schizophrenia or other serious mental illness ”. The above outline shows that each
organization seeks to fill a niche not met by the formal health care system.

Familv Education

The need to base service provision on evidence of need and/or effectiveness is no
less important for the voluntary than for the public health-care sector. Thus, in the delivery
of family education programs there must be supporting evidence demonstrating the

23

educational requirements of families of individuals with mental illness. In addition, it is
important that evidence indicates that family education programs address and meet these
requirements.

The strategy for this section of the literature review was to search for literature
published after 1990 that explored the psychosocial and cultural needs of family members
of individuals with a mental illness. Additionally, this literature review explored some
outcomes of family education and some discussion about research on the field of families
of individuals with a mental illness.

Table 3.1 is a brief summary of some of literature found in the search for
psychosocial needs of family members. In order to be consistent with the definition of
mental illness from chapter 2, an analysis of what mental illness is defined as in the afore­
mentioned papers is necessary. Doombos (1997) and Lundwall (1996) use the undefined
term of mental illness with no further explanation. Greenberg et. al. (1997) referred to
mental illness as serious mental illness. Ascher-Svanum et. al. (1997) use the term mental
illness as patients of the state psychiatric hospitals and/or clients of community mental
health centres. Mueser et. al. (1996) referred to mental illness as schizophrenia and bipolar
disorder. Marsh et. al. (1996) referred to mental illness as schizophrenia, schizoaffective,
bipolar, and major depressive disorder, personality disorder, and others. Solomon and
Draine (1995) referred to mental illness as schizophrenia and major affective disorders.
Solomon (1996) referred to mental illness as schizophrenia and other heterogeneous
diagnosis. Kane (1992) and Wer and Moller (1992) referred to mental illness as

24

schizophrenia. Pickett et. al. (1997) referred to mental illness as schizophrenia, bipolar
disorder, and depression.

Table 3.1 is a summary of the literature examined to determine the psycho-socio­
bio-educational needs of families with a relative with mental illness. This analysis shows
that family members require education about the etiology of mental illness (AscherSvanum, 1997, Doombos, 1997, Pickett et. al., 1997, Mueser et. al., 1996, Solomon, 1996,
Wer, & Moller, 1992). Additionally, they require spiritual and social support (Doombos,
1997, Pickett et. al., 1997, Lundwall, 1996, Marsh et. al., 1996, Solomon & Draine, 1995,
Kane, 1992). Family members want to collaborate with professionals (Greenberg et. al.,
1997, Kane, 1992). In addition, they want appropriate mental health services for their ill
family members and if necessary for themselves (Greenberg et. al., 1997, Pickett et. al.,
1997). Also, family members want additional skills to cope with their situation (Pickett et.
al., 1997, Solomon, 1996). Additionally, they want some positive consequences as a result
of their encounter with mental illness (Marsh et. al., 1996). Finally, family members want
support and connections with other families experiencing mental illness in their family
(Doombos, 1997, Pickett et. al., 1997, Lundwall, 1996, Marsh et. al., 1996, Solomon,
1996, Solomon & Draine, 1995).

Ascher-Svanum et. al. (1997) analyzed the responses of 197 out of 300 family
members of individuals with a mental illness in Indiana. These family members were not
members of Indiana Alliance for the Mentally 111 (lAMT). Representatives from lAMI and
academic and mental health professionals developed the 118-item survey. The survey

25

Table 3.1

Literature Review of Family Educational and Psychosocial Needs

Authors
Variable Studied Outcome
Ascher-Svanum, Educational needs Families want education on: future course of illness; medication
benefits and side effects; crisis management
et. al. (1997)
of families
Families required: facilitative attitudes; spiritual support;
Doombos, (1997) Family coping,
fear, and burden increasing knowledge about mental illness; support groups
Greenberg, et. al., Family distress
Distress reduced by: appropriate mental health services for ill
relative; collaborative relationships with professionals;
(1997)
information; advice from professionals
Kane, (1992)
Family coping
Families need: collaboration with professionals; a social support
system
Lundwall, (1996) Grief
Connecting with other families for social supports
Marsh, et. al.,
Grief and
Families need: social support system; courage; some positive
consequences as a result of their encounter with mental illness
resilience
(1996)
Mueser, et. al.,
(1996)
Pickett, et. al.,
(1997)

Solomon, P.
(1996)

Methodology
Survey
Survey
Interviews
Meta-Analysis Study
Psychoeducation and Support
Survey

Questionnaire
Families need to understand which symptoms cause the most
family burden. The top 8 are: inactivity; delusions; avoiding
people; no insight; talking to oneself; up all night; extreme distress;
labile mood
Program
Improvement focus evaluation. Outcomes: participants improved Multiple surveys of participants,
Evaluation of the understanding of mental illness, increased knowledge of treatment teachers, trainers, developers.
Journey of Hope system, participated in advocacy activities, had improved morale, Statistical analysis of survey
Program
outcomes.
had more social support, ability to differentiate role of family
members. There was little reduction in caregiving burden.
Family education Families need requisite knowledge, skills and resources to provide Literature Review
the primary care for adults with mental illness
Family burden

26

Table 3.1 (continued)
Authors
Solomon &
Draine, (1995)
Wer & Moller,
(1992)

Literature Review of Familv Educational and Psychosocial Needs
Methodology
Variable Studied Outcome
Families need: affective and affirming support; membership in a Interviews, Carver's Coping
Family coping
group that gives family support (National Alliance for the Mentally Scale(1989), Norbeck Social Support
111); a large social network; affirming support from social network; Questionnaire (1983), Pai and Kapur's
Subjective Burden Interview (1981)
the ability to get the desired outcome from oneself
Families were educated about future course of illness; medication Post-test Likert Scale
Program
evaluation of an benefits and side effects; crisis management. There was no formal
assessment of familial needs prior to development of program.
educational
program of
families and their
ill relative

27

most preferred format was either phone consultations or a support group led by a
psychiatrist, a psychologist, or a social worker (Ascher-Svanum et. al., 1997). Family
members also preferred a one to two hour or a half day Saturday workshop at a community
mental health centre or a psychiatric hospital (Ascher-Svanum et. al., 1997). The least
preferred workshop types were ten weekly sessions or an all-day weekday workshop
(Ascher-Svanum et. al., 1997). The least preferred workshop type merits mentioning
because it is the format chosen by Burland to deliver the Familv-to-Familv education
program. The best time for workshops was in the afternoon or evening (Ascher-Svanum
et. al., 1997). Participants wanted the service provided free of charge and preferred travel
time to course to be less than thirty minutes (Ascher-Svanum et. al., 1997). Additionally,
family members felt that their ill relative would benefit from education about and coping
strategies with their illnesses (Ascher-Svanum et. al., 1997). This education could be with
or without other family members (Ascher-Svanum et. al., 1997).

Doombos (1997) studied the problems and coping methods of 108 Michigan
caregivers of young adults with a mental illness by posing two questions. The first
question was, “What are the greatest problems that you encounter as a result of having a
mentally ill family member?” (Doombos, 1997, p. 23). The second question was, “What
are the best ways that you found to cope with these problems?” (Ibid.). The five most
common problems were “caregiver burden, client’s symptoms, negative impact on [the]
family unit, grief,... [and] fear of what will happen to their ill relative when his/her parents
die” (Doombos, 1997, pp. 23-24). Four major coping methods were: assuming facilitative
attitudes; relying on faith; increasing knowledge of illness; [and] attending support groups”

28

(Doombos, 1997, p. 23). This study focused on nursing implications, however, this
researcher believes that these implications are transferable to family educators and program
developers. One implication discussed by the author is that nurses (and educators) must
gear their information giving or teaching to assist family members in coping (Doombos,
1997).

Additionally, nurses (and educators) can also facilitate in ensuring that the

spiritual needs of family members can be met and refer family members to other
appropriate agencies where necessary (Doombos, 1997).

Greenberg et. al. (1997) conducted 778 telephone interviews of family members in
Wisconsin to determine how the provision of mental health services to relatives with
mental illness affected the level of distress experienced by family caregivers. Greenberg et.
al. explored three aspects of mental health services; “the inclusion of family members as
collaborators in the treatment process, information and advice given to family members,
and direct services to clients” (1996, p. 41). The participants were asked by their relative’s
case manager to participate in the survey. The family member survey measured two
dimensions of objective burden; amount of care and frequency of dismptions (Greenberg
et. al., 1996). This survey also measured subjective burden (Greenberg et. al., 1996). The
survey found that family members who had a collaborative relationship with professionals
experienced lower levels of distress than those without a collaborative relationship
(Greenberg et. al., 1996). Additionally, the survey found that information and advice
giving by mental health services to family members also reduced their levels of distress
when compared to those not receiving the aforementioned services (Greenberg et. al.,
1996). Finally, family members experienced low levels of distress when their ill family

29

member received increased levels of mental health services (Greenberg et. al., 1996). It is
noteworthy that individuals with mental illness who lived with other family members
received less mental health services than those who lived independently. Also,
professionals were more likely to collaborate with, and provide information and advice to
family members when their relative with a mental illness was living with them (Greenberg
et. al., 1996).

Kane (1992) analyzed 22 papers on programs designed to educate and support the
coping skills of family members of individuals with schizophrenia. Kane refers to these
programs as psychoeducation (1992). However, since these programs are directed to the
needs of family members, they are now referred to as family education programs
(Solomon, 1998). Kane was interested in programs that promoted provider-family
collaboration (1992). In her review, she stresses the importance of providers understanding
that families provide a social support system and act as an important resource for
individuals with a mental illness (Kane, 1992). She also explores three models of family
intervention. They are single family interventions, multi-family interventions, and short­
term, multi-family structured programs (Kane, 1992). She further discusses in detail the
planning and implementation of short-term, multi-family structured programs (Kane,
1992). Kane (1992) also discusses where, when, and how often to deliver the
aforementioned program. Additionally, Kane (1992) proposed guidelines on how to begin,
conduct, conclude, and evaluate a short-term program. She concluded, “with good
planning, administrative support, and organization, cost-effective family educational

30

programs can be offered that enhance the coping capacities and the support system
functions of families caring for their relatives with schizophrenia” (Kane, 1992, p. 128).

Marsh et. al. (1996) performed a United States-wide open-ended question survey of
131 family members from the membership roles of the National Alliance for the Mentally
HI (NAMI). This survey explored resilience among family members of people with mental
illness. Resilience is defined as “the ability to rebound from adversity and prevail over the
circumstances of our lives” (Marsh et. al., 1996, p. 4). When a family member develops a
mental illness, often, the entire family experiences adversity. The study respondents were
asked to describe the following:
a) any special personal qualities or strengths they had developed as a result
of the mental illness in their family;
b) any special family qualifications or strengths that developed as a result of
the mental illness;
c) their personal contributions inside or outside the family;
d) the contributions of their relative with mental illness inside or outside the
family; and gratifications [a special feeling of satisfaction].
e) any gratifications they had experienced in their role as caregiver or
concerned family member;
f) whether they, their family, or their relative with mental illness
experienced a process of adaptation or recovery; and
g) the factors or resources that promoted positive changes in them, their
family, or their relative” (Marsh et. al., 1996, p.6).

The study found that the dimensions of family resilience included family bonds and
commitments, strengths and resources, growth and development, contributions, and
gratifications (Marsh et. al., 1996). Additionally, they determined that the dimensions of
personal resilience included personal contributions, improved personal qualities, growth
and development, enhanced coping effectiveness, personal gratifications, and better
perspectives and priorities (Marsh et. al., 1996). Consumer resilience was found to have

31

dimensions of positive personal qualities, recovery, contributions to the family,
contributions to other consumers, and contributions to the mental health system and to
society (Marsh et. ah, 1996). Finally, 75% of family members reported positive changes in
themselves, their families, and their relative with a mental illness. This reference was
included in the review because any educational program targeted towards family members
has to acknowledge that family members have personal strengths, which assist them in
coping with subjective and objective burdens that mental illness places on them, their
families, and their relative with a mental illness.

Lundwall (1996) describes a novel family intervention program that combines an
education and a support group format called Fsychoeducational Support Group. The goals
of the program are either relapse prevention of the mentally ill relative or improved family
function depending on the materials used or the desired outcomes. This extensive program
lasts 24 months. The first eight classes about the etiology of mental illness are weekly.
The second ten classes about handling problems, facilitating the ill relative’s rehabilitation,
and giving guidance to find appropriate services are monthly. The last six months of the
program depend on the needs of family member participants. A multi-disciplinary team of
medical, mental health, vocational rehabilitation, and psychosocial rehabilitation
professionals delivers the program. The program leadership slowly transfers from the
professional to the family members over the 24-month period. This program was designed
and proposed by professionals without the consultation of family members. From the
description of the program in the paper, it is difficult to determine whether this program
has ever heen delivered. However, this paper is included in the literature review because

32

the family member’s needs were not assessed, and no planning activities occurred other
than a theoretical presentation of a professional’s perception of a family targeted program.

Mueser et. al. (1996) developed a questionnaire to assess the perceptions of family
members’ burden due to twenty common positive, negative, and manic behaviours
associated with schizophrenia and bipolar disorder. This questionnaire was given to 48
relatives and 39 mental health professionals (Mueser et. al., 1996). The professionals were
included in this study to determine whether professionals had different perceptions of the
family burden than the relatives themselves (Mueser et. al., 1996). The relatives and
professionals were presented with twenty vignettes of behaviours (Mueser et. al., 1996).
The relatives were to rate the frequency of the problem’s occurrence using a 5 point Likert
scale (1 = not at all, 5 = very often) (Mueser et. al., 1996). Similarly, relatives were asked
to rate how much distress this behaviour caused (1 = no distress, 5 = extreme distress)
(Mueser et. al., 1996). The professionals rated the vignettes on their belief on how often
problem behaviours were exhibited by mentally ill relatives and predicted the levels of
distress this behaviour would cause family members (Mueser et. al., 1996). The relatives
of individuals with bipolar disorder were most burdened with manic symptoms and had
greater total burden than families with a relative with schizophrenia (Mueser et. al., 1996).
The lack of insight in their ill relative burdened this group more than any other problem
behaviour (Mueser et. al., 1996). The relatives of individuals with schizophrenia were
burdened by negative symptoms slightly more than positive symptoms (Mueser et. al.,
1996).

The inactivity of their relative with schizophrenia burdened this group more than

any other problem behaviour (Mueser et. al., 1996). The professionals estimated that

33

relatives of an individual with bipolar disorder would have more burden from manic
symptoms which was a similar finding with family members (Mueser et. al., 1996).
However, professionals differed from family members about the behaviour that caused the
most distress; professionals thought that overactivity would cause the most burden (Mueser
et. al., 1996). The professionals estimated that relatives of individuals with schizophrenia
would have burden from positive symptoms, which is a different conclusion than that of
family members (Mueser et. al., 1996). Professionals thought that inactivity was the
behaviour that caused the most burden. This perception of family burden corresponded
with the perception of family members (Mueser et. al., 1996). 11 was noteworthy that
professionals estimated that relatives of individuals with schizophrenia had greater burden
than families of an individual with bipolar disorder (Mueser et. al., 1996). This estimate
was opposite of the family members’ assessment (Mueser et. al., 1996). In conclusion,
this paper shows that there are differing perceptions of family burden by family members
and professionals (Mueser et. al., 1996). In order to clarify the results from this
questionnaire, see tables 3.2 and 3.3. All the symptoms listed are problem behaviours,
however, it should be noted that not all problem behaviours caused family burden in the
population studied by Mueser et. al. (1996). This is the reason behind inclusion of family
members in developing programs targeted towards them. Additionally, this paper
supported my experiential knowledge from working with families of individuals with
either schizophrenia or bipolar disorder; family members of people with bipolar disorder
seemed to experience more burden.

34

Table 3.2
Ranking Symptoms Causing Family Burden as Perceived by Family
Members of Individuals with Bipolar Disorder and by Professionals (adapted from
Mueser et. al., 1996) (Burden rating 1-20, where Greatest Burden = 1, and Least Burden =
20)
SvmDtoms

No Insight
Inactivity
Labile Mood
Delusions
Overactivity
Unpredictable Behaviour
Up all night
Extreme Distress
Avoiding People
Irritability
Noncompliance
Blaming Others
Poor Follow Through
Talking to Self
Inability to Handle Money
Poor Hygiene and Grooming
Aggressiveness
Poor Social Skills
Inability to get a Job
Strange Appearance or
Behaviour

Familv Burden
perceived bv family
members
(bipolar disorder)
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20

Familv Burden
nerceived bv
professionals (bipolar
disorder)
6
13
2
8
1
11
9
16
17
3
5
7
12
18
4
15
10
20
14
19

35

Table 3.3
Ranking Symptoms Causing Family Burden as Perceived by Fam ily
Members of Individuals with Schizophrenia and by Professionals (adapted from
Mueser et. al., 1996) (Burden rating 1-20, where Greatest Burden = 1, and Least Burden ;
20)

SvmDtoms

Inactivity
Delusions
Avoiding People
No Insight
Talking to Self
Up all night
Extreme Distress
Labile Mood
Unpredictable Behaviour
Poor Hygiene and Grooming
Noncompliance
Poor Social Skills
Inability to Handle Money
Irritability
Blaming Others
Poor Follow Through
Inability to get a Job
Strange Appearance or
Behaviour
Overactivity
Aggressiveness

Family Burden
perceived bv familv
members
(schizophrenia)
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18

Familv Burden
perceived bv
professionals
(schizophrenia)
1
3
9
6
8
5
18
17
14
4
2
15
13
7
19
12
16
11

19
20

20
10

36

Solomon and Draine (1995) studied the coping factors of family members of
individuals with a mental illness. Two hundred and twenty-five (225) family members
acting as caregivers of a relative with mental illness, primarily schizophrenia, were
surveyed. Approximately half of the participants never participated in support groups
previously (Solomon, & Draine, 1995). The survey collected demographic data on the
participants, measured their ill relative’s functioning, and measured adaptive coping, social
supports, subjective burden, objective burden, and self-efficacy of family members
(Solomon, & Draine, 1995). Solomon and Draine (1995) found that social support was the
strongest factor in adaptive coping. This social support derived from the ability of family
members to confide in members of their own social network rather than from a support
group (Solomon, & Draine, 1995). After statistical analysis, they found that there were
strong linkages among social support, self-efficacy, and adaptive coping (Solomon, &
Draine, 1995). This paper indicates that family members have existing supports outside
the mental health system and any programs dealing with family’s needs could incorporate
strategies to encourage sharing confidences within these social networks.

Wer and Moller (1992) developed a psychoeducation program directed towards
individuals with schizophrenia, professionals, and family members. They developed the
course during a dynamic process using improvement-focused evaluation from 688
attendees (Wer & Moller, 1992). The program consists of six sessions about the etiology
of schizophrenia, living with hallucinations and delusions, understanding medications, and
compliance and relapse (Wer & Moller, 1992). This program was the basis of the
NurSeminars Recovering from Psychosis: A Wellness Approach program developed by

37

Moller and Murphy (1997) discussed further in chapter 4. This reference is included in the
review because it shows a process of psychoeducation program development based on
family needs as well as the needs of individuals with a mental illness.

Solomon (1998) describes four types of family interventions; psychoeducation;
supportive family counseling; family education; and family support and advocacy groups.
In this thesis, psychoeducation and family education approaches are compared and
discussed because the psychiatric profession very actively promotes psychoeducation
whereas family-based advocacy organizations, such as BCSS and National Alliance for the
Mentally Dl (NAMI), promote family education (Burland, 1998, BCSS, undated).

Solomon (1996, p.1364) stated that,
“the primary goals [of family education] are supportive and didactic rather than
therapeutic [and] interventions are focused on improving family members’ quality
of life by reducing stress and burden and only secondarily on benefiting the ill
relative”.
Most of the current literature about family members of individuals with a mental illness
revolves around family burden, coping, resilience, grief, and distress. Education programs
geared to family education emphasize familial competencies rather than deficits (Dixon &
Lehman, 1995 cited in Solomon, 1996). This means that family education emphasizes that
family members are doing the best they know how to do rather than emphasizing that their
methods for coping are wrong.

In 1992, the Mental Health Division of the BC Ministry of Health in cooperation
with the Provincial Mental Health Family Advisory Committee, set up a family task force

38

to perform a provincial needs assessment of family members of individuals with severe and
persistent mental illness (Ministry of Health, 1993). Family members, service providers,
and staff of BCSS, Mood Disorders of BC, Canadian Mental Health Association, BC
Division, and Alzheimer’s BC were surveyed and/or interviewed about the needs of family
members (Ministry of Health, 1993). The responses were collected, analyzed, and reported
in the Families Sharing the Caring report (Ministry of Health, 1993). In this report the
family task force said, “families want education about mental illness, medications, and
survival skills soon after the onset of the illness” (Ministry of Health, 1993, p. 28). Thus,
when selecting an educational program in BC, these familial requirements need to be
factored into the choice.

More traditional psychoeducation programs include both therapeutic and
educational components (Solomon, 1996). The therapeutic components include learning
about coping and adaptation strategies, and increasing self- efficacy (Solomon, 1996). The
educational components include: relapse prevention strategies; and information about the
etiology of mental illnesses; medications; grieving process; rehabilitation; and mental
health services available (Solomon, 1996). Pyschoeducation programs have limited
acceptance by advocacy groups for families of person with mental illness because of the
association that has arisen between psychoeducation and the concept of expressed emotion.
Solomon operationally defined the concept of expressed emotion as “the family’s degree of
criticism, hostility or rejection, and over-involvement” (1996, p. 1365). Brown et. al.
(1966, cited in Davison & Neale, 1994) originated the concept of expressed emotion as a
determinant in the relapse of patients diagnosed with schizophrenia. The concept of

39

expressed emotion has been shown by Linzen, Dingemans, Nugter, et. al. (1997),
Barrowclough, Tarrier & Johnston (1996), Wuerker (1996), Lefley (1992), Vaughan and
Leff (1976), and others to be significantly and reliably associated with relapse of
individuals with a mental illness.

Often advocacy groups that represent family members feel that the concept of
expressed emotion implies blaming of families for the ill relative’s relapses (Solomon,
1996). The reason behind this misconception is that in the past, families and particularly
mothers were blamed for causing schizophrenia. In 1949, Tietze (cited in Torrey, 1995)
studied 25 mothers of patients of individuals with schizophrenia with no control group.
Since she found the mothers to be hostile and exhibited resentment towards the psychiatrist
for blaming them for causing their children to become schizophrenic, she concluded that
this evidence was conclusive that mothers caused schizophrenia. The concerns expressed
by family members about expressed emotion often deal with the trauma experienced by
mothers being blamed for causing mental illness in their relative. For them, it is described
as being like a roller coaster ride of believing “here we go again, I didn’t cause this illness,
but now, I am being blamed for relapse” (Kimmins, 1997, personal communication). This
misinterpretation of expressed emotion needs to be addressed by advocacy groups that
support family members of individuals with a mental illness.

40

Relapse Prevention as an Outcome of Psvchoeducation

Psychoeducational programs are geared to the patient’s needs rather than the
family’s. It is beyond the scope of this thesis to study the extensive body of literature
looking at family intervention and patient relapse prevention using psychoeducational
techniques. Because psychiatrists consider the use of psychoeducation programs as the
standard for relapse prevention and family involvement with mentally ill relative, it is
important to discuss the gold standard study by McFarlane, Link, Dushay, Marchai &
Crilly (1995). McFarlane et. al.’s (1995) four year experimental study on relapse outcomes
and the provision of psychoeducation in multiple family groups is one of the most
recognized studies in the relapse prevention and family intervention field. McFarlane et.
al. (1995) performed a clinical trial to compare the merits of single-family interventions of
psychoeducation, multifamily interventions of psychoeducation, and multifamily groups
with family dynamic intervention in combination with antipsychotic medication with
respect to the rate of relapse of patients with schizophrenia or schizoaffective disorder.
The Study was conducted in New Jersey using patients and their families randomly
assigned to the treatment protocols. The family members were not selected for high
expressed emotion unlike previous studies. The family-dynamic multifamily group had a
high dropout rate that affected the interpretability of the data. The patient relapse rate was
significantly lower when patients and their family participated in the multi-family
psychoeducation program in combination with the use of antipsychotic medication by the
patient (McFarlane et. al., 1995). This study prompted McFarlane et. al. and others to

41

study the effect of different patient and family intervention strategies in combination with
patient medication on relapse rate of the patients.

Other Outcomes of Family Education

Solomon, Draine, Mannion, and Meisel (1998a) performed an effectiveness trial
using three groups: control (a waiting list), a ten-week group workshop, or individual
consultation. Family members were randomly assigned to one of three groups. The trial
was designed to determine whether family intervention significantly changed help seeking
assistance from community mental health services. There were no significant differences
in help seeking behaviour in the two family interventions and the control groups.

Solomon and Draine (1995) studied subjective burden among 225 family members
of mentally ill adults in a study using a randomized clinical trial of two modes of
psychoeducational intervention. Family members were assigned to group psychoeducation,
individual family consultation, or to a waiting list control group. The program designated
as psychoeducation would nowadays be defined as a family education program. The
family education program consisted of two hours per week for ten weekly sessions. Its
objectives were to teach about mental illness and its treatment, promote the idea that family
members would understand that they were not alone, and provide guidelines for dealing
with their ill family members, other family members, and the mental health system. The
individual family consultation model involved using family members to specify the focus
of their psychoeducation with their consultant. Families could access the service on an as

42

needed basis for up to three months for a minimum of six and a maximum of 15 hours.
Solomon and Draine (1995) found through the use of pre- and post- test of subjective
burden, that, subjective burden was reduced in the psychoeducation and the individual
family consultation model groups, but not in the control group.

Review of Research in the Field of Families of Psychiatric Patients

Rose (1996) reviewed research performed on families of individuals with a mental
illness. She found that although, there is a significant body of literature that characterizes
the nature of family burden, there was a lack of systematic research into interventions that
were efficacious in reducing family burden. Rose found that research on the
aforementioned group tended to be qualitative in nature rather than quantitative (1996).
Thus, there was richness about the contextual environment in which family members of
individuals with a mental illness lived, rather than outcomes of family interventions
(1996). Since this review was prior to most of the systematic and randomized
effectiveness trials looking at specific outcomes performed by Solomon, it might have
provided that impetus for Solomon to perform this research (1998). When performing the
literature review, this researcher noted that Solomon was the only researcher found that
performed effectiveness trials on family education. Thus, researchers need to determine
the efficacy of family education programs delivered in order to determine whether
Solomon’s analysis and results can be duplicated.

43

Families not in Contact with a Relative with a Mental Illness

The needs of families not in contact with their relative with a mental illness are
addressed in this literature review because some participants and non-participants of the
Familv-to-Familv education program are not in contact with their relative with a mental
illness. Wasow (1994) referred to these families as “a missing group in family research”.
She further hypothesizes that:
1. Parents are not missing, but their offspring are. Parents had no choice in
maintaining contact.
2. Parents sever relationships with their ill family member because of ignorance
about mental illness in our society.
3. Some families are chaotic and cannot cope. As a result, individual families
choose to discontinue contact.
4. Some families are limited by economic hardship, geographic separation, and
system failure that can interfere with contact. (Wasow, 1994, p. 720).

Cultural Perspectives in Mental Illness

Different cultures have different perspectives when dealing with mental illness in
the family. Lefley (1998) determined that family members from a Hispanic background
viewed mental illness as emotional problems whereas family members from other cultures
preferred a medical explanation for mental illness. Additionally, Lefley (1998) found that
there were two behaviours exhibited by family members of individuals with a mental
illness: sociocentric and autonomous. Family members exhibiting sociocentric behaviours
were help-accepting whereas family members exhibiting autonomous behaviour indicated
that the acceptance of help infringed on their personal autonomy and perceived that
dependence is a weakness. Lefley (1998) also determined that family members of African-

44

American background had high coping mastery and self-esteem. Therefore, they perceived
that they had a lower burden than other cultural groups.

When working with family members from First Nations groups, Johnson and
Johnson (1998) perceived that it was important to “know about the tribe and its
relationships with other tribes in the area” (p. 89). Cultural differences affect clinical
management, presentation of symptoms, lifetime course of the illness, rehabilitation goals
and methods, kinship obligations and privileges, and traditional healing treatments
(Johnson & Johnson, 1998). Because non-native clinicians were told that certain Indian
communities do not have people with diagnosable mental illness, the Native American
Family Project was sponsored by the Centre for Mental Health Services of the National
Institute for Mental Health in the United States. Unfortunately, the study methodology was
not discussed in this paper. Johnson and Johnson worked with native Americans in the
states of North and South Dakota, New Mexico, Arizona, Utah, Alaska, and Washington.
Because native Americans typically viewed family involvement in the treatment process as
natural, Johnson and Johnson state that there is a need for information giving to family
members (1998). One finding was that the National Alliance for the Mentally Dl’s (NAMJ)
written material was helpful to families; however, single information sessions were rarely
enough. This project also found that family education in groups was an effective
intervention. Furthermore, supported family counseling as developed by Berheim (1982,
cited Johnson & Johnson, 1998) appeared to be appropriate for American Indian families.
Supported family counseling or family consultation is a flexible and collaborative approach

45

to supplying expert advice and information to an individual family member or to the whole
family unit (Berheim, 1982)._

Factors Affecting Program Implementation in Health Education Programs

Any educational program targeted toward any audience must undergo a process of
implementation. Program implementation has characteristics that can be crucial in limiting
or enhancing the effectiveness of the education per se. Implementation can be understood
as a logical process involving certain components or phases. This section reviews
theoretical processes of program planning for the implementation of health education
programs. These theoretical processes will be used for analytical purposes to generate
questions and to guide the data analysis in this study. Additionally, it will be used for a
comparison to the process used by the implementors of the Familv-to-Familv education
program. The strategy used for reviewing the literature on implementation of health
education was to search for evaluations of health education programs, which were often
implemented as national multi-sectorial programs or exhibited key characteristics of
program implementation. Finally some unifying conclusions will drawn at the end of this
literature review.

Dignan and Carr define health education programs as “a package of services or
information that is intended to produce a.... positive impact on health” (1992, p. 5).
Implicit in this definition is the assumption that there is a target group for the health

46

education program. Kiger described five models of health education that often share
common elements:
1.
2.
3.
4.
5.

the information-giving or medical model
the educational model
the propaganda or media model
the enabling or community development model
the political model (1995, p.31)

The information giving or medical model sets up the informant as the expert, who gives
talks, promotes clear messages and assumes that the facts will persuade the target group to
change (Kiger, 1995). The educational model leads the target group to discover, sets up
the group to discuss feelings and challenge facts in order to promote change (Kiger, 1995).
The media model employs attractive packaging of the message to manipulate the target
group to change (Kiger, 1995). The enabling or community development model
encourages the use of individuals’ or organizations’ strengths to change on their own terms
(Kiger, 1995). The political model uses community provocation to mobilize the people in
power to effect societal change (Kiger, 1995).

Dignan and Carr (1992) propose a community development model of health
education and promotion planning as seen in figure 3.1. This model uses a circle as a
graphical representation of the cyclical nature or dynamism of the program planning
process. Dignan and Carr (1992) focus on the continued improvements of programs and
define the process of program planning as a series of interconnected steps: community
analysis; community diagnosis; establishment of program focus; target analysis; program
plan implementation; and program evaluation. Burland (undated) states that the Familv-toFamilv education program uses an empowerment model of self-education which is

47

Figure 3.1

A Community Development Health Planning Model (Dignan & Carr, 1992)

COMMUNITY ANALYSIS
i 'ommiintjy \ naiysis:
•
the (*\iiniiiialiuii «>f Ihe eoniinunity’;» heullh slatus,
srrvicf delivrr) p a ttirn s and the dcterm inatiuii ul Us
strengths, weaknesses, and trends
•
analyses issues o r problem s
Community analysis uses
•
health status data
•
focus groups
•
cominuiiit} meetings
key informant interviews and organizations involved
with t jrgct group
l argeted Assessment identifies the
target group and issue/behaviour to be
modified

Evaluation
• a process of
inquiry into the
perform ance of a
program bused
on standards

TARGETED
ASSESSMENT

PROGRAM PLAN
DEVELOPMENT
EVALUATION

IMPLEMENTATION

Implementation is putting the plan into action.
gaining acceptance
spccilleation of tasks and estimate resource needs
after reviewing the plan
develop specitic plans for program activities
establish a mechanism for program management
put plans into action

Program Plan
Development involve^:
•
rerriiitincnl of a
planning group
•
developing of health
and educational goal
•
develop objectives for
goals
■ explore constraints
and resources
•
sdi ntily ami select
methods and activities
•
plan for
implementation
•
plan for evaluation
•
write the planning
document

48

comparable to Kiger’s enabling or community development model and Dignan and Carr’s
community development model. However, the Familv-to-Familv education program is
actually an information giving and skills building program as will be discussed in chapter
4.

Implementation is putting the plan into action. As shown in figure 3.1,
implementation has five phases (Dignan & Carr, 1992):
1.
2.
3.
4.
5.

Gain acceptance for the program
Specify tasks and estimate resource needs
Develop specific plans for program activities
Establish a mechanism for program management
Put plans into action (p. 122)

Because the implementation of a new program involves change, gaining acceptance
is challenging. Change can be resisted by individuals in the target group and the provider
group (Dignan & Carr, 1992). In the target population, acceptance involves both passive
support and active participation in the program. These reactions may be different. A new
program can be supported by the target group and still have low numbers of actual
participants. Dignan and Carr (1992) contend that the best method to ensure participation
is to have sufficient involvement of the target population and the community at large.
Resistance to change by provider and funding organizations should be over come by
planning functions performed by the management structure of these organizations.
However, local autonomy can play either a positive or a negative role in acceptance of a
new program.

49

In the second phase of program implementation, program tasks are specified from
reviewing the plan in detail and the required resources are estimated. Three main tasks are
accomplished by reviewing the plan. Determination of the products of the program assists
in clarifying the program’s goals and steps to achieve these goals is the first task (Dignan &
Carr, 1992). The second task is the preparation of a detailed list of program activities
(Dignan & Carr, 1992). Determination of the interrelationship between these activities is
the third task (Dignan & Carr, 1992). The estimation of resource requirements is an
important step in program implementation because without appropriate resources the
program cannot be delivered. Estimation of resources includes: staffing requirements;
supply and equipment needs; space requirements; media and marketing requirements;
education style; and sufficient budget for the resources required (Dignan & Carr, 1992).
After estimating resources, a review of the plan may be required if sufficient budget is not
available. Alternatively, further firm negotiation for adequate budget to cover the plan
may be essential (Dignan & Carr, 1992).

The third phase of implementation is developing plans for program activities. This
includes developing a marketing campaign and a direct education portion (Dignan & Carr,
1992). Product, promotion, place, and price are the four components of marketing (Patton,
1980). When implementing a program, one has to decide how to introduce the program.
In addition, implementors need examine the status of the program and the sponsor with
respect to the target population.

50

Establishing a system for program management is the fourth task in
implementation. Three basic indicators are time, cost, and performance (Dignan & Carr,
1992). Time is easy to control by using a series of estimated times for completion of
phases of the program for comparison purposes. When these milestones are reached early
or late, changes can be made to the plan. Another indicator is cost (Dignan & Carr, 1992).
Budget utilization can be an indicator of adherence to the implementation of the program
as planned. Performance indicators for program management are difficult to develop
(Dignan & Carr, 1992).

Indicators need to be developed that can evaluate outcomes

(Dignan & Carr, 1992). For example, the question of whether the program outcomes
matches its goals could be answered. Indicators need to be developed that determine
whether the target population is the population participating in the program (Dignan &
Carr, 1992). Additionally, from whom one collects performance indicators is important
(Dignan & Carr, 1992).

The fifth and final phase is putting plans into action. A check should be conducted
to ensure that the target population remains unchanged (Dignan & Carr, 1992). Dignan
and Carr (1992) suggest that implementors check the target population’s readiness to
change, any changes in tasks, resource requirements and resources available, review the
plans for introduction, and review management plans.

51

Evaluation of Program Implementation

Fitzgerald and Illback (1993) stated that “the primary purpose of implementation
evaluation is to determine the extent to which the program is operating as planned” (p.41).
In their discussion of principles and procedures for the evaluation of program
implementation, they included questions about the following:
1. How are nursing care staff engaged in intervention activities and to what
extent?
2. In what ways are program participants involved in the intervention program?
3. Are appropriate methods and material being used in the intervention program by
nursing staff?
4. What intended and unintended side effects do nurses, patients, and their
families, and others perceive?
5. Is there a discrepancy between what was planned and what was actually
delivered? (Fitzgerald & Illback, 1993, p. 42)
These principles can be included in the analysis of the implementation of the Familv-toFamilv education program.

Implementation Issues

As a result of the reviewing the literature. Table 3.4 summarizes the
implementation issues raised in the literature.

Fidelity is defined as “conformity with prescribed elements [of the program] and
the absence of non-prescribed elements” (p. 670, McGrew, Bond, Dietzer, & Salyers,
1994). Fidelity is also referred to as adherence to the program (Pentz & Trebow, 1991).
This researcher grouped the use of contracts to ensure program fidelity and program

52

Table 3.4

Literature Review for Program Implementation

Authors

Kirby, Garfink, Starck,
Russo, & Bachman,
(1991)

im plém entation Issue
University Hospital Nurse Internal and external factors that affect acceptance
Extender Program,
and implementation: leadership, financial, union,
training and preparation, licensing, and legal issues
Boston University
Medical Centre, Mass.

Proqram

Training, learning strategies, parent participation,
Contente, Kell, Keiiley, Changing the Course,
American Cancer Society time, support from administrators, integration into
& Corcoran, (1992)
in Elementary Schools in core programs. Quantitative m easurem ent of fidelity
Northeast United States of implementation & degree of augmentation &
qualitative m easurem ent using teachers' perception
Biegel & Song, (1995)

Studied program knowledge, referral sources, and
Caregiver Support
Program, Midwest United facilitators and barriers to participation in Caucasian
States
and African-American communities using variables
found in literature review

Jerrel & Ridgeiey,
(1999)

Dual Diagnosis Program, Quantitative m easurem ent of fidelity of program
implementation shows significant differences in
South Carolina
program outcom es.

Raizman,
Montgomery,
Osganian, Ebzery,
Evans, Nicklas, Zive,
Hann, Snyder & Clesi,
(1994)

Child & Adolescent Trial
for Cardiovascular
Health (CATCH), US
National Program

A ssessm ent of exposure using forms for attendance,
visits, promotion, participation. A ssessm ent of
implementation fidelity using a checklist.

Baker, C. G., (1977)

National Cancer
Research Strategy, US.
Implementation Issues in
Drug Prevention
Research, US

Discussion of advantages and disadvantages of the
use of contracts to ensure fidelity of implementation.

Pentz & Trebow,
(1991)

Rohland, B. M„ (1998) Medicaid Managed
Mental Health Care in
Iowa

Measured acceptance of program and adherence to
using program materials. M easured fidelity using selfreport and others to determine on-task and off-task
behaviour.
Emphasizes need for clear, concise, and
comprehensive implementation plans. Most
problems encountered were due to insufficient plans.

McMillan, Tittle, and
Hill, (1993)

"1 Can Cope" Educational Studied referral patterns and facilitators of referrals.
Program, American
Found that primary physicians were least likely to
Cancer Society
refer. Facilitators were handouts/brochures, flyers,
personal contact, & nurse/social worker referrals.

Jarrett, M. H., (1996)

A Parent-to-Parent
Support Program in a
Neonatal Intensive Care
Unit in Washington, DC

Studied the volunteer training program using
pretest/posttest design. Used confidential screening
tool with input from volunteer coordinator for selecting
peers. Studied referrals using brochures & from
charge nurse. Em phasized quick response time.

53

Table 3.4

Literature Review for Program Implementation (continued)

Authors

Proqram

Imolementatfon Issues

Cassady, Orth, Guyer, Injury Prevention
Programs by State
& Groggin, (1997)
Health Agencies, US

Failures due to ambiguous policy directives, lack of
support by agencies/participants, unconvincing
program, inadequate monitoring, insufficient
organizational capacity, systemic problems.
S u ccesses occurred through problem solving
strategies.

Bierman, K. L , (1997)

Program for the
Prevention of Conduct
Problems in Rural
Communities in Penn,
US.

D iscusses the characteristics of rural communities
and their impact on implementation. Characteristics
include regionalism, geographic dispersion,
complicated entry system s, closed social system,
difficult to recruit families from outside community.

Shorten, S. M., (1984)

Improving the Study of
Health Program
Implementation

Quantify implementation wherever possible.
Reduce delay in implementation. N ecessary to
have a clear plan to increase external validity.

Vinokur, Price, &
Gaplan, (1991)

Employment Program for Compared participants and non-participants. Asked
Unemployed Persons in the question about who needs the intervention most.
Michigan, US.
Found that non-participants had rate of re­
employment & greater confidence in skills despite
lower and lower socio-economic & educational
levels.

54

augmentation as elements associated with program fidelity. Augmentation is the addition
to or improvement of the existing materials (Pentz & Trebow, 1991). Augmentation is
often referred to as re-invention (Pentz & Trebow, 1991).

Acceptance is the degree to which the program is acknowledged by the system in
which it is delivered (Biegel & Song, 1995, McMillan, Tittle, & Hill, 1993, Kirby, Garfink,
Starck, Russo, & Bachman, 1991).

Additionally, program acceptance is multi-factorial

and includes referral patterns and methods, exposure of the program, screening of
volunteers, participants and non-participants, and community linkages. Biegel and Song
(1995) discuss three elements of acceptance; knowledge of the program; accessibility; and
intent to utilize services. Knowledge involves the services by the target population, and
the potential service providers who refer the target group to the program. Additionally,
knowledge involves the purpose of the program. Accessibility involves affordability,
availability, and location of the program. There are four factors that affect the intent to
utilize services: attractiveness to target group; personal contact; personal attitudes to
seeking help; and cultural factors (Biegel & Song, 1995).

McMillan, Tittle, and Hill

(1993) also include the time of the day as a factor that facilitates accessibility. They found
that evening hours were most suitable for delivering programs. However, the timing was
based on the needs of the program deliverers rather than the needs of the participants.
Exposure is the number of hours in the program and the number of teachers available to
delivers the program (Pentz & Trebow, 1999).

55

Facilitators of and barriers to program implementation are characteristics of the
program that assist and impede program success (Biegel & Song, 1995). If a service is to
used, the target group should have knowledge of the program, the service must be
affordable, available, and reachable, and the target group should intend to use the service
(Biegel & Song, 1995). One of the most important facilitators to implementation is
program planning (Posavac & Carey, 1997).

Another barrier to or facilitator of program

implementation is the characteristics of raral communities, which will be discussed fully
later in this chapter (Bierman, 1997, Ministry of Health, 1995).

Contento, Kell, Keiiley, and Corcoran (1992) studied the implementation of the
Changing the Course education program developed by the American Cancer Society “to
provide students with knowledge, motivations, and behavioural skills to adopt healthpromoting and cancer risk-reducing eating behaviours” in northeastern United States (p.
411). “The behavioural goals of this program are to eat a wide variety of vegetables and
fruits, especially those high in vitamins A and C, to eat more high-fiber foods, and to eat
less fat and fewer fatty foods” (Contento et. al., 1992, p. 411). The target populations were
lower elementary grade and upper elementary grade school children. The sixteen lesson
plans for lower elementary grade children and fifteen lessons plans for upper elementary
school grade children were taught by the classroom teachers (Contento et. al., 1992).
Quantification of fidelity to the lesson plans was demonstrated through the use of a Fidelity
Index developed by Contento et. al. (1992) to determine how closely the teacher adhered to
the written material. They started with a score of 16 for lower elementary curriculum and
15 for the upper elementary curriculum. One point was subtracted for each class not

56

taught, 0.5 point was deducted for each class where an activity or relevant content was
omitted, and 0.25 was deducted for each class taught in which the teacher altered
instruction or procedure in a manner judged to lessen the value of the curriculum (Contento
et. al., 1992).

Additionally, Contento et. al. (1992) developed a quantitative measure for
augmentation called an Augmentation Index. “Starting with 0, 1 point was added for each
class in which the teacher added relevant content or activity, and 0.5 for each class in
which the teacher altered instructions or procedures in a manner deemed to enhance the
value of the curricula” (p. 413, Contento et. al., 1992).

As a result of this evaluation, all the educators completed the curriculum between
90-94% of the time according to the fidelity index. The educators augmented the program
on average of two activities within the fifteen or sixteen lessons (Contento et. al., 1992).
Thus, the program was implemented as planned as shown in the high fidelity scores.
Additionally, the material met the needs of the target group as perceived by the educators
as shown by the low augmentation scores.

The issues of fidelity to Borland’s plan and augmentation of the material relate to
the implementation of the Familv-to-Familv education program as well as the Changing the
Course program because both programs are implemented in multiple centres where
adhering to a plan cannot be closely controlled. Thus, the use of a fidelity index can assist
in reminding educators to adhere to the program philosophy and program goals. Similarly,

57

the use of augmentation index encourages the supplementation of the program in a manner
that encourages reflection upon the suitability of the materials utilized.

Shorten (1984) presented seven suggestions for improving the study of health
program implementation. Shortell (1984) identified the first area of interest as the neglect
of program implementation process research. He thought that the emphasis on program
outcome, as a result of delivering a program, was a detriment to examining how
implementation can affect program outcomes. The second area identified was the reasons
for failure of programs to achieve their objectives through theory failure and/or
implementation failure (Shortell, 1984). Every program has an underlying theory and
assumptions behind it. Additionally, the theory is operationalized in a plan that shows how
the program should work. The third area is the quantitative study of program
implementation (Shortell, 1984). Shortell (1984) advised that quantitative measures such
as calculations of delays in the implementation timetable, deviations from projected client
numbers, turnover rates, meeting attendance, dropout rates, session attendance, rate of
project management forms, and so on should be used as evaluation tools. Quantitative
measures can be supplemented with naturalistic observations of implementations, and
open-ended questions (Shortell, 1984). The fourth area of interest is triangulation
(Shortell, 1984). This “refers to the use of multiple methods - of data collection, measures,
research designs, and even theories” (Shortell, 1984, p. 120). The fifth area of interest was
the planned variation in program implementation (Shortell, 1984). Programs that are
effective at one point in time and in one setting are not necessarily effective at a different
time and place, thus external validity was an issue (Shortell, 1984). The sixth area of

58

interest is the development of closer ties to organization theory and behaviour (Shortell,
1984). The implementation of programs affects the macro or institutional level,
intermediate level of work groups and supervisors, and the individual level (Shortell,
1984). The seventh area of interest is the need for longitudinal studies of program
implementation (Shortell, 1984). ShortelFs (1984) discussion of program implementation
evaluation is a reminder about the need for a careful plan and a careful analysis for the
generation of the recommendations for the evaluation of the Familv-to-Familv education
program.

Jerrel and Ridgeiey (1999) measured the robustness of program implementation of
three types of treatment on the outcomes of a dual diagnosis program. The three types of
treatment; behavioral skills training, a 12-step recovery model, and intensive case
management were delivered to 132 clients who had a diagnosis of severe mental illness
with a co-morbid condition of substance abuse (Jerrel & Ridgeiey, 1999). The programs
were either robustly or loosely implemented (Jerrel & Ridgeiey, 1999).

Clients who

received the robustly implemented behaviour skills, and case management interventions
had significantly higher psychosocial functioning at a lower cost when compared to clients
who received the less robustly implemented programs (Jerrel & Ridgeiey, 1999).

Pentz and Trebow (1991) reviewed the methods evaluating the quality of
implementation of drug abuse programs. These methods of evaluating drug abuse
programs are generalizable to the evaluation of health education programs such as the
Familv-to-Familv education program. This paper defines program adherence, exposure.

59

and reinvention (Pentz & Trebow, 1991). They discussed three types of retrospective
qualitative measurements to assess the fidelity of program implementation; self-report;
other reports; and behavioural observation (Pentz & Trebow, 1991). Additionally, they
discussed the parameters of influence being the person, their situation, and environment
(Pentz & Trebow, 1991).

Raizman, Montgomery, Osganian, Ebzery, et. al. (1994) performed a process
evaluation of the Eat Smart School Nutrition program. The goals of the school lunch
program were providing nutritious, reasonably priced lunches, contributing to a better
understanding of good nutrition, and fostering good habits (Raizman et. al., 1994).
Raizman et. al. (1994) developed measures for the evaluation of program implementation.
Program management forms were developed to assess fidelity to the protocol using
Training Attendance Forms, Visit Summary Form, Promotional Activities Form, School
Meal Participation Worksheet, Menu/Recipe Collection Forms, and Guideline Checklists
Forms (Raizman et. al., 1994). Even though the forms were developed to assess program
implementation in a nutrition program, the use of forms as standard methodology for
assessing program implementation is generalizable across programs.

Another method to ensure the fidelity of program implementation is the use of
contracts. Baker (1977) discusses the advantages of using contracts in the implementation
of cancer research programs. In a contract, the goals, objectives, and priorities of the
program are set (Baker, 1977). Additionally, a well-written contract will show clearly
delineated guidelines for program implementation, monitoring, and evaluation (Baker,

60

1977). The utilization of contracts can facilitate close and quick control over the program
and can allow for program shifts as quickly as new information is integrated into the
program (Baker, 1977). Baker (1977) also discusses the disadvantages of using contracts.
There can be a shortage of capable program officers (Baker, 1977). Additionally, the
regulation established in contracts may be over-elaborate and sometimes not well accepted
(Baker, 1977). Furthermore, the use of contracts can create problems in the running of
organizations that either generate the contracts or sign them (Baker, 1977). This paper is
useful in the evaluation of the Familv-to-Familv education program because Burland uses
contracts with state or provincial coordinators to assist in adhering to the program.

Rohland (1998) comments about the problems that were encountered when
introducing a Medicaid funded, contracted-out mental health program in Iowa. The goal of
the program was to provide all mental health services, including evaluation, treatment
planning, targeted case management, medication management, and substance abuse
programs for person with a diagnosis of mental illness, on a fee-for-service basis for a
period of two years commencing on March 1, 1995 (Rohland, 1998). Rohland (1998)
found that most problems encountered were due to the lack of a comprehensive plan. She
determined that standards of quality and performance indicators were not specified and the
contractor developed their own which encouraged conflict between the contractors and the
contractée (Rohland, 1998). In addition, there was no plan developed during the
contractual development process for patients from rural and remote areas (Rohland, 1998).
Another problem encountered was that there was no plan for the safe discharge of children
into the community (Rohland, 1998). Additionally, patients were denied authorization for

61

acute health care services when medically required (Rohland, 1998). Within one year,
these issues were solved by clearly setting performance standards and expectations and
improving the plan. This reference is useful in the evaluation of the Familv-to-Familv
education program because expectations of both the process of program implementation
and the outcomes of this program need to clearly delineated in contracts with program
deliverers.

Kirby, Garfink, Stark, Russo, and Bachman studied the University Hospital Nurse
Extender Model which was developed “to enhance patient care despite a declining supply
of nurses and increasing demand to reduce health care costs” (1991, p. 22). They
found that internal and external systemic factors influenced acceptance of the Nurse
Extender Model (Kirby et. al., 1991). Union opposition, insufficient training and
preparation of nurses, financial constraints, and changes in nursing leadership during the
program trial were internal factors that negatively impacted program implementation
(Kirby et. al., 1991). Confusion between the label of Patient Care Technician (PCT) given
the personnel who delivered the Nurse Extender Model and an already existing Registered
Care Technologists (RCT) impeded external acceptance (Kirby et. al., 1991). Additionally,
the nurses’ union did not accept the transfer of care giving activities from registered nurses
to unlicensed caregivers (Kirby et. al., 1991). Kirby et. al. (1991) found that an ongoing
process of implementation, evaluation, reinvention and re-implementation of the program
assisted in solving implementation issues. This program evaluation also found that
professional acceptance of the program was integral to program implementation, which is
relevant to implementation of the Familv-to-Familv education program.

62

Yingling and Trocino (1997) discussed five strategies to integrate patients and
family education into patient care design of non-insulin-dependent diabetics and their
families. These five strategies were integral in establishing acceptance of patient care
program (Yingling & Trocino, 1997). The first strategy was building a plan for patient and
family education (Yingling & Trocino, 1997). The second strategy was establishing a
mission “to improve the health and quality of life” of non-insulin-dependent diabetics and
their families (Yingling & Trocino, 1997, p. 248). The third strategy was building
involvement of professionals, diabetics, and their families (Yingling & Trocino, 1997).
The fourth strategy was to establish collaboration among professionals with differing
expertise and the target population to identify educational needs and to provide a learning
environment that strengthens self-management and self-efficacy (Yingling & Trocino,
1997). The fifth strategy was to build accountability into the patient and family education
process (Yingling & Trocino, 1997). Often, this strategy involves changing the work
culture of professionals to value patient and family education (Yinghng & Trocino, 1997).
Yingling and Trocino (1997) suggested that this could be achieved through changing job
descriptions to include patients and family members as team members in patient care
strategies. This final strategy is an integral characteristic of acceptance of the Familv-toFamilv education program into the formalized mental health system.

Cassady, Orth, Guyer, and Groggin (1997) measured the implementation of injury
prevention programs in 44 out of 50 states of the United States. No specific programs were
evaluated using the mail out questionnaire and telephone interviews. However, “the

63

responding programs included injury prevention or control, maternal and child health,
health promotion and education, emergency medical services, epidemiology units,
environmental health, disability prevention, chronic disease, and health departments”
(Cassady et. al., 1997, p. 96). They assessed the index of implementation success by
exploring five major factors of legislative activities, injury surveillance activities,
monitoring and evaluation, community involvement in the development, planning, and
delivery, and institutionalization or permanence of the injury prevention and control
programs (Cassady et. al., 1997). They found that some reasons for failure or the minimal
success of programs were ambiguous policy directives, lack of a constituency of supportive
agencies, unconvincing program rationale, inadequate monitoring or oversight practices,
and sufficient capacity for implementation of programs (Cassady et. al., 1997).
Additionally, they found that program success was dependent upon solving the problems
that were identified as reasons for failure of programs (Cassady et. al., 1997). This review
of injury prevention programs is generalizable to the Familv-to-Familv education program
because the evaluation of the Familv-to-Familv education program includes similar
challenges as those faced by evaluators of multi-sectorial injury prevention programs.
These challenges include policy development, a constituency of support for the program,
monitoring practices, organizational capacity for delivering a multi-sectorial program, and
the rationale behind the program.

Referral patterns and methods affect the acceptance of programs. Biegel and Song
(1995) studied referral patterns to a support group for families of individuals with a mental
illness. There were 198 lower social class family caregivers of individuals with severe

64

mental disability. From the above sample of caregivers, there were 94 Caucasian and 104
African-American caregivers (Biegel & Song, 1995). Using referral patterns, Biegel and
Song (1995) assessed support group referral facilitators and barriers. They found that
referrals to support groups were most common from human services and mental health
agencies and by personal physicians (Biegel & Song, 1995). Thus, professional referrals
facilitated support group attendance. The major obstacles were lack of time, transportation
difficulties, lack of need, lack of accessibility, and concern for confidentiality (Biegel &
Song, 1995). Additionally, this survey determined that 40% of people who did not attend
support groups had never heard about support groups (Biegel & Song, 1995). Since not all
caregivers were not in contact with mental health professionals, some other approaches
need to be taken (Biegel & Song, 1995). These approaches included use of news media,
and develop partnerships with clergy (Biegel & Song, 1995). The accessibility issues could
be solved by delivering programs in the neighborhood of the participants, and provide
transportation to and from the groups (Biegel & Song, 1995). The factors raised by Biegel
and Song (1995) are generalizable to the Familv-to-Familv program because accessibility
was an important factor in delivering the afore-mentioned program.

McMillan et. al. evaluated the nationally implemented, and sponsored by the
American Cancer Society, I Can Cope education program which provides resources that
help people “to cope with the diagnosis of cancer and it attendant problems” (1993, p.
455). The program delivered information about “cancer, coping with daily health
problems, expressing feelings, learning to like yourself, living with your limitations, and
resources that can help” (McMillan et. al., 1993, p.455). As part of the evaluation of the

65

implementation strategy, they surveyed referral patterns to a program by healthcare
professionals (McMillan et. al., 1993). The referral sources were physicians, nurses, and
social workers (McMillan et. al., 1993). It was noteworthy that primary physicians were
least likely to refer because they forgot, and they had little knowledge about the program
(McMillan et. al., 1993). Additionally, some physicians felt the program did not meet their
patient’s need, however these unmet needs were not delineated (McMillan et. al., 1993).
The examination of referral patterns is generalizable, as an integral part of evaluating
program acceptance as part of implementation, thus, this paper is a useful tool to
investigate strategies for evaluating the Familv-to-Familv education program.

Vinokur, Price, and Caplan (1991) studied the implementation, from field
experiments, of an intervention program for unemployed persons. The goal of this
program was “to promote reemployment in high-quality jobs and to prevent poor mental
health and loss of motivation to seek reemployment among those who continued to
unemployed” (Vinokur et. al., 1991, p. 548). Participants and non-participants in the above
program had different demographics (Vinokur et. al., 1991). Generally, the participant
group was more highly educated, older, suffered less economic hardships, had less
confidence in skills, and lower proportions of people re-employed whereas the non­
participant group was younger, less educated, suffered more economic hardship, had
greater confidence in skills, and greater proportions of people were re-employed (Vinokur
et. al., 1991). From the data presented, it may be that non-participants self-select to opt out
of the program because they really do not need it (Vinokur et. al., 1991). The results from
this evaluation of the participants and non-participants are generalizable to the participants

66

and non-participants of the Familv-to-Familv education program because the analysis the
characteristics of participants and non-participants overlap in both programs.

Jarrett (1996) evaluated the program implementation of the Parent Partners
Program, a parent-to-parent support program, in a neonatal intensive care unit in
Washington, DC. The goals of this program are:
1. to provide informal support for families experiencing a premature birth, a
critically ill newborn, or a newborn loss
2. to give parents the support and confidence they need to feel that they are part of
the intensive care or special care nursery team
3. to provide information to families about hospital and community resources for
their infant and family
4. to assist families in the transition from the hospital to home (Jarrett, 1996, p.
142^

The support was provided by trained family volunteers who were screened using a
confidential screening tool with contributions from a volunteer coordinator (Jarrett, 1996).
Volunteers were trained using a four-session program (Jarrett, 1996). The effectiveness of
volunteer training was assessed using pretest and posttests to ascertain how well trainees
knew factual information from each of four training sessions (Jarrett, 1996). The trainees
learned factual information with 89% to 95% accuracy (Jarrett, 1996). Jarrett (1996)
found that the success of the program was predicated on the recruitment of volunteers,
which mirrors the importance of volunteer educator recruitment for delivering the Familvto-Familv education program.

Bierman (1997) evaluated the delivery of the Fast Track Program in rural
Pennsylvania. The Fast Track Program was developed

67

“to evaluate the feasibility and effectiveness of a comprehensive, multicomponent
prevention program targeting children at risk for conduct disorder in four
demographically diverse sites: mral Pennsylvania; Seattle, WA; Durham, NC; and
Nashville, TN” (Bierman, 1997, p. 494).

At each site, children were randomly assigned to the intervention or the control groups
(Bierman, 1997). The six year prevention program was followed by comparing the
outcomes of the control and intervention group (Bierman, 1997). The intervention group
of children were given an adapted version of Promoting Alternative Thinking Strategies
(PATH) curriculum (Bierman, 1997). The PATH program “focuses on skills in four
domains related to school success:
a)
b)
c)
d)

prosocial behaviour and friendship skills
emotional understanding and self-control
communication and conflict resolution skills and
problem solving skills” (Bierman, 1997, p 495)

Her evaluation focus was the factors of rural communities that played a role in the
implementation of and outcomes from the PATH program (Bierman, 1997). She found
that geographic dispersion and isolation of rural communities affected implementation of
programs because entry into these communities was challenging, due to the time necessary
for understanding of and establishing contact with community members and agencies
(Bierman, 1997). Additionally, due to the stability and isolation of rural communities, she
found entry into the community challenging (Bierman, 1997). Additionally, Bierman
(1997) postulated that rural communities tended to emphasize traditional parenting and
educational practices, behavior, traditions, and a belief in self-sufficiency. Bierman (1997)
thought that rural culture rather than the content of the intervention affected the process of
implementing. Thus, establishing positive, collaborative relationships with professionals.

68

agencies, families and children has to take precedence over the content during the initiation
phase of program delivery (Bierman, 1997). However, she also found that once a program
is established, “the small, stable, and more insular community structures of rural areas can
facilitate a long term commitment to and ownership of a prevention program that may be
difficult to attain in the large and fluid school and community structures in the cities”
(Bierman, 1997, p. 512). The information from this paper is directly generalizable to the
delivery of the Tamilv to-Familv education program in northwest BC. Since northwest BC
consists of small rural and remote communities, implementors of the Family-to-Family
program will probably encounter similar barriers to program introduction.

From the review of factors affecting the implementation of health education and
other programs, one can conclude that program implementation is a complex process. This
process is based on a multitude of factors including the theories upon which the program is
based, community and individual acceptance of programs, a comprehensive and dynamic
implementation plan for program fidelity and augmentation, and the allocation of adequate
resources to the program.

69

Chapter 4

The Familv-to-Familv Education Program

In 1993, the BCSS embarked on a process of implementing family education as a
service to its stakeholders. That process resulted in the implementation of the Familv-toFamilv education program. This chapter will provide a description of this program, after
describing some of the alternatives available. Additionally, this section briefly describes
the program goals and philosophy of other family education and family-ill relative
psychoeducation programs available for selection during the same time frame that
implementors in BC decided to deliver the Familv-to-Familv education program. The next
section describes the goals, philosophy, and history of the development of the Familv-toFamilv education program. In addition, the results of an outcome evaluation of the
program performed by Pickett, Cook and Laris (1997) will be discussed. The program
selection and early implementation process is then described. Next, the two phases of the
Familv-to-Familv education program are described more fully. Finally, the program
management system is described.

Family education programs targeted towards mental illness available in 1993 are
shown in table 4.1. Where possible, the philosophy of each program will be briefly
discussed.

Alexander’s (1991) Understanding and Coping with Schizophrenia 14 Principles
for the Relatives was a guide to coping, caring and surviving for relatives of people with
schizophrenia. The guide was based on the experiential knowledge of family members. It

70

Table 4.1 Education C ourses Available for Consum ers and/or Family
Members
(C ohen, M. H., Urn, 0 ., & Irwin, D. A., 1998,
Scadding, S , & P e a rs o n , C., 1998, A lexander, K.,
1991, a d a p te d from Torrey, E. P., 1995, p. 351-352)
Orientation
A u th o r
Program Name
A lexander, K., 1991 U nderstan d in q a n d copinq with Family
sch izo p h ren ia 14 orincioles for
th e relatives
A m ensen, 0 .
How to Survive a n d Thrive with Family
a M entally III R elative
C o n su m e rs with
P atien t an d Family Education
B isbee, 0 .
family
Family
Borland, J.
Fam ily-to-Fam ily Education
P rogram
University of British C olum bia
Family
C ohen, M. H., Lim,
Family E ducation a n d S u p p o rt
0 ., & Irwin, D. A.,
G roup
1998
M aryland Familv E ducation
Family
Hatfield, A.
Program
Family
LeG acy, S.
Supportive Familv Training
C oping Skills for Fam ilies
Family
M ental H ealth
Training an d E ducation C e n te r
A ssociation of
S o u th e a ste rn PA
Moller, M.
C o n su m e rs with
N urS em inars
family
C o n su m e rs
O regon AMI
B ridges: P e o p le Helping
P eople
G uelph W ellington Dufferin
Family
S cadding, S, &
P e a rso n , C., 1998
Familv E ducation G ro u p s
UCLA

UCLA Skills Training M odules

?

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was a tool for the empowerment of family members to take control of their lives through
self-care and education. A modified version of this program is delivered in partnership
with BCSS coordinators and hospital social workers in some health regions BC.

The Bridges: People Helping People education program is an acronym for Building
Recovery of Individual Dreams and Goals through Education and Support (BRIDGES
[Brochure], undated). This program, developed by the Tennessee Alliance for the Mentally
111, is directed towards individuals recovering from a mental illness. It is based on the
belief that individuals with a mental illness can and do recover. Furthermore, these
individuals can achieve a new valued sense of self and purpose in accepting and
overcoming the challenges of a disability that affects every aspect of their lives: physical,
intellectual, emotional, and spiritual. The program consists of two phases: education and
peer support. It was fashioned after the Familv-to-Familv education program as designed
by Burland (1993). The education phase is fourteen weeks long and educates consumers
about the etiology and treatment of mental illness, learning about feelings and how to
manage these feelings (BRIDGES [Brochure], undated). The support phase was developed
to provide opportunities to learn and practice coping skills using trained volunteer peers of
people with a mental illness (BRIDGES [Brochure], undated). This program is delivered
by consumers of the mental health system in some regions of BC.

The NurSeminars Recovering from Psvchosis: A Wellness Approach A 3-R’s
Recovery Phase Course for Clients. Families, and Providers education program was
expanded by Moller and Murphy (1997) from a program developed earlier by Wer and

72

Moller (1992). The philosophy of this program is that “wellness education and
empowerment are the keys to understanding and managing psychiatric disorders” (Moller
& Murphy, 1997, p. iv). The course was developed to educate individuals with
schizophrenia, major depression and bipolar disorder, their family members, and providers
using the most current information regarding the etiology and treatment of these diseases.
Additionally, the program was designed “to promote personal and family self-awareness”
(Moller & Murphy, 1997, p. iv). The program developers felt that mental disorders,
particularly psychoses, affect the entire family. Thus, individuals with the disorder and
their family are invited to attend together. The developers believed that, “the more
knowledge everyone in a family assimilates at the same time, the more solid the family unit
will become. Therefore, individuals with mental and psychotic disorders and their families
are taught simultaneously” (Moller & Murphy, 1997, p. iv). The developers also believed,
“that families and individuals diagnosed with mental and psychotic disorders serve as
teachers” (Moller & Murphy, 1997, p. iv). Additionally, the developers felt that they grew
and developed both personally and professionally because they learned from program
participants.

Family education groups, developed by Scadding and McQuinn in 1995, were
initiated by the Guelph Community Mental Health Centre to be delivered in the GuelphWellington-Dufferin region of Ontario. A registered nurse and a registered social worker
taught this twelve-week family education program. The course content includes: etiology
and treatment; Mental Health Act; crisis management; housing; advocacy; and peer support

73

(The Glorious Aftermath of the Family Education Groups Caregiver Initiatives in Guelph
Wellington Dufferin, Ontario-1995-1999, 1999).

The University of British Columbia Family Education and Support Group has been
delivered for ten years. This program is an integral part of the Schizophrenia Day Program
at the University of British Columbia Hospital. The goal of the day program is “to enable
individuals to develop purposeful and meaningful activities, roles and relationships while
decreasing their rate of relapse” (UBC Day Program Brochure, 1995). This nine-session
program focuses on educating family members about the etiology and treatment of
schizophrenia. Additionally, family members are educated about the family and caregiver
experience in the context of relapse prevention, realistic goal setting, and the creation of a
low stress environment for their relative with a mental illness. This program also educates
family members about crisis management and community resources (Helping Overcome
Psychosis Early Website, February 13, 2001,
http://liddlelab.psychiatry.ubc.ca/hope/topic/content/srdp_description.html). From the
above information, it can be concluded that this program is a psychoeducational program
focusing on the patient.

Description of the Familv-to Familv Education Program

The Familv-to Familv education program was designed by Joyce Burland (1998,
1993). In its most recent version, it consists of a twelve-week sequence of classes,
delivered by trained, volunteer family educators (see Table 4.3). The first edition of the

74

program did not clearly outline program philosophy and goals. This lack of clarity affected
the acceptance and understanding of the program. However, the second edition described
the program more thoroughly. In 1993, Burland initially targeted the program to family
members of adults with schizophrenia, bipolar disorder, and severe depression. However,
in the second edition, the target group was expanded to include family members of adults
with panic disorder, and obsessive-compulsive disorder (OCD), as well as schizophrenia,
bipolar disorder, and severe depression (Burland, 1998).

The Trauma-and-Recovery Model of family education is the theoretical basis of the
Familv-to-Familv education program (Burland, 1998). Lindemann (1944, cited in Burland,
1998) proposed the trauma-and-recovery model as a secondary intervention framework.
Lindemann (ibid.) found that people normally exhibit severe distress to trauma.
Additionally, he found that people adjust to crisis in stages. In the trauma-and-recovery
model, the keys to planning appropriate interventions are knowing what a person is
experiencing and then determining what interventions they require at each stage of crisis
adaptation. This approach assists individuals in overcoming adversity. Individuals
overcome trauma through psychic healing that involves “establishment of safety,
remembrance and mourning, and reconnection with ordinary life’ (Burland, 1998, p.37).
The focus of the Familv-to-Familv education program is to place the trauma of having a
family member diagnosed with mental illness into a “fuller life perspective and even
achieve the final psychic victory over misfortune” (Burland, 1998, p.37). Thus, Burland
(1998) planned the program to assist family members heal from trauma in a safe
environment with other family members experiencing and recovering from similar traumas.

75

Burland (undated) performed a needs assessment by interviewing over a hundred
family members of patients with a mental illness about their perceived needs. Families
identified two principal areas of need: practical information and skills, and understanding
their personal trauma as a result of coping with a relative with a mental illness (Burland,
undated). From this analysis, the program philosophy of family empowerment through
self-education improving knowledge, skills, comprehension, and support was developed.
Thus, Burland (undated) chose an empowerment model of self-education. The principles
for helping families come through trauma were outlined as follows:
•
•
•
•
•

the focus is on the family member, not the ill person.
families are encouraged to regain the primacy of their own lives
[the crux of self care is in] expressing anger and grief
teaching empathy is the means of gaining acceptance of loss
family members can help each other “let go” (Burland, 1998, p. NB-15)

In the second edition of the program, Burland (1998, p. NB-10) stated that the
“purpose of this course is to guide family members to emotional understanding”. The first
program goal is empowerment and self-help for families of the individuals with mental
illness (Burland, undated). Burland fulfilled this empowerment goal through the inclusion
of ways to become an effective advocate, through its built-in assumptions that family
members can be effective and capable teachers, and by having family members design and
implement the family education program. The self-help goal is a recurring theme
throughout each class. For example, educators are directed to say, “you can only help
yourself or you can only change yourself, you can’t change others”.

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The second goal of the program is to prevent the traumatic impact of mental illness
in their family from further undermining family members’ own stability and compromising
their effectiveness as long term caregivers (Burland, undated). When Burland assessed the
needs of family members, she asked questions about, “What have you lost in all of this that
was most precious to you? and Tell us what you have had to come to terms with that was
hardest for you?” (undated, p. 21). Family members’ answers included words like
“shattering, devastating, horrendous, agony, and desperation”(Burland, 1998a, p. 36).
Burland referred to these words as the “language of family pain” (1998a, p. 36). Burland
decided to “use a trauma model of recovery as a constant emotional guide and touch-stone”
(Burland, undated, p. 21). Burland interpreted this model as a method for normalizing
family members’ individual reactions to the traumatic event of having a family member
diagnosed with a severe mental illness. This method included the reassurance that there
was nothing pathological about their normal reactions to the aforementioned events.

The third goal of the program is personal healing and restoration (Burland,
undated). The empowerment model of self-education helps validate individuals’
experiences, which are believed to assist in personal healing. Family members found that
through self-disclosure discussions of their experiences with others encountering similar or
parallel situations often validated these experiences. Some individual family members
believed that if their peers felt similarly then it was okay to feel this way, thus self-healing
occurred. Often family members felt that their personal guilt was reduced after taking the
education program, thus the program promoted personal restoration. For example, Burland
(undated, p. 22) stated that, “the most characteristic comment on the evaluation is the

77

family members’ sense of liberation of negative feelings of guilt and entrapment and their
newly found confidence in themselves and life’s possibilities”.

Burland (undated) developed two phases of the program. The first phase is a
program in which volunteer family educators are trained, through the use of a manual in the
delivery of a twelve-class education program. This phase involves advertising and
marketing of the program, screening of potential participants, delivery, monitoring, and
evaluation of the program. The second phase is a manual-based training program for
support group facilitators to deliver monthly support groups. Both phase I and phase H
must be implemented.

Outcomes of the Familv-to-Familv Education Program

The expected outcomes of the entire program are not clearly described in the
program materials. However, an evaluation of the program performed by Pickett, Cook
and Laris (1997) summarized the program outcomes.

In 1996, at a Familv-to-Familv education training session in Chicago, Illinois,
Pickett et. al. (1997) assessed the attendees’ participation in the program using face-to-face
interviews, and group tests. This group used the modified version of the client satisfaction
scale (Attikisson et. al.., 1978 cited in Pickett et. al.., 1997) to assess satisfaction with the
education course. They also used the Joumev of Hope evaluations provided by Joyce
Burland. The support group program was assessed by a further modification of the client

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satisfaction scale (Attikisson et. al.., 1978 cited in Pickett et. al.., 1997) and the Maton
support group assessment scale (Maton, 1988 cited in Pickett et. al.., 1997). The Maton
questionnaire uses five sub-scales to assess the dimensions of support groups. The sub­
scales are: “support received by group members, support provided by group members,
friendships, role differentiation, and overall satisfaction with the group” (Maton, 1988 cited
in Pickett et. al.., 1997, p. 6). This group also used the Thresholds Family Burden Scale
(Cook, Lefley, Pickett & Cohler, 1994 cited in Pickett et. al.., 1997) to assess the burden of
family members of individuals with a mental illness. Pickett et. al. (1997, p.11) used
hierarchical regression analysis to “determine whether respondent and relative
characteristics, and levels of satisfaction with the Joumev of Hope program were predictive
of improved respondent outcomes, as well as whether improved outcomes were predictive
of outcomes in another [participant]”. Pickett et. al. found that the
“education course students were primarily female, white, parents, several of whom
had other family members who had taken the course, and had heard about the
course through AMI [the Alliance for the Mentally 111], a family member or friend,
or from reading about the course from newspaper”. (1997, p. 15)
Pickett et. al. also found that the
“characteristics of the relatives with a mental illness were mostly male (62%), had
an average age of 35 years old, with an average age of onset of 22 years old, and
with an average length of illness of 12 years. Most were unmarried (79%) and 43%
lived with the participant in the Joumev of Hope education program. Forty percent
of the relatives had had a primary diagnosis of schizophrenia; 27% bipolar disorder;
16% major depression; 10% schizo-affective disorder; 4% other diagnosis such as
personality disorder or obsessive-compulsive disorder and 3% of the relatives’
diagnosis were unknown to the education course student”. (1997, p. 15)
Using the Thresholds Family Burden Scale, Pickett et. al. (1997) found that caregiving
burden was not significantly reduced by participation in the Joumev of Hope education
program. Furthermore using the other scales mentioned above, Pickett et. al. (1997) found

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that participants had an improved understanding of mental illness, an increased
understanding of the treatment system and advocacy activities, improved morale, and more
friends. Additionally, Pickett et. al. (1997) found that the more the participants
participated in differing phases of the program, the greater degree of improved morale.

Overall, in their evaluation of the Familv-to-Familv education program Pickett et.
al. concluded that the outcomes were:
•
•
•
•
•
•
•

increased understanding of the etiology, course, and treatment of mental illness
improved relationships with the ill relative
increased awareness of sources of assistance and support
increased morale and self-care
decreased feelings of stigma, isolation, and guilt
greater ability to engage in advocacy
better communication with service providers (1997, p. 5)

Program Selection and Earlv Implementation of the
Familv-to-Familv Education Program in British Columbia

The volunteer implementors of the Familv-to-Familv education program were
Elaine Preston and Margaret deLange. Elaine Preston was the mother of five sons; one
was diagnosed with schizophrenia in the 1970’s. She dedicated the latter stages of her life
(she died in 1998) to a greater understanding of the needs of those with a mental illness and
their families. Margaret deLange is the mother of two sons, one has a mental illness that
has been diagnosed as schizophrenia. As a former BCSS regional coordinator in the Fraser
Valley/North Shore/Sunshine Coast, she has dedicated her life to her family and the
education and support of families of individuals with a mental illness and their afflicted

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relatives. Preston and deLange selected the program based on hearing a presentation at the
1993 International Association of Psychosocial Rehabilitation Symposium (lAPSRS)
(Preston, 1998, personal communication). Preston felt that through her personal
experience and knowledge of other BCSS members’ experiences, family members needed
this program. Her rationalization of this selection was based on the knowledge that Joyce
Burland, the originator of the program, was a family member of individuals with mental
illness. Burland’s personal experiential knowledge validated the program for Preston.
Preston was also attracted to the program because family members taught the course to
other family members. This empowerment of family members of individuals with mental
illness meshed with the role of BCSS in the mental health system in BC.

There was no needs assessment performed by the implementors in BC. Through
their personal experiences and their knowledge of other families’ experience with having a
relative with a mental illness, both deLange and Preston appreciated that families needed
information about the mental illness and they had an understanding of the feelings of
family members. The primary motivation was to help other families to cope with mental
illness in their family. Preston said:
“I’m glad that I didn’t listen to the people who were against it. This is the one thing
in my life that I really felt that I don’t care what they think. 1 am going ahead with
it. WE NEED IT. I knew what it did for me the first time I taught this; the first
time actually I took my training. I said I have made so many mistakes but it’s okay
now I can rectify those mistakes. It’s what I need and if I need it, so does
everybody else. It’s just everything that I thought it would be and more” (1998,
personal communication).

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The original name of the program, Joumev of Hope, meshed with the BCSS
message of hope for alleviating the suffering caused by schizophrenia and other related
disorders. Preston felt that “hope was the light at the end of a tunnel for family members of
individuals with mental illness” (1998, personal communication).

Phase I of the Familv-to-Familv Education Program

This section provides general information about phase I of the Familv-to-Fami 1v
education program as it began to be implemented in BC. The first phase of training of
volunteer educators involved a three-day intensive training session by the provincial
coordinators of the program. The training was done in co-leader pairs for each venue.
After learning the philosophical basis of the program, the participants practiced delivering
some of the workshops in the curriculum and teaching the material. The provincial
program coordinators offered tips and constructive advice on improving the teaching styles
of the educators. A comprehensive manual was provided for each family educator. The
motto of this program was “it’s all in the iFamilv-to-Familv Education Manual] book”
(Preston, 1996, personal communication).

The program trainers also provided samples of funding proposals because the
provincial budget for the Familv-to-Familv education program only covered the training of
the volunteer family educators and support group facilitators. The delivery of the local
Familv-to-Fami 1v education programs had to be locally funded through the health
authorities responsible for administering Consumer and Family Initiatives Funds. These

82

health authorities were in turn funded by the BC Ministry of Health. In northwest BC,
these funding proposals included: rental of the venue, coffee break supplies, charts,
photocopying, miscellaneous supplies, end of class celebration, and travel,
accommodation, and meals when the program was delivered in Smithers or Prince Rupert.

The second portion of the first phase was the delivery of the program by the co­
leader pairs. The program manual was organized in a sequential, task flow manner. The
first chapter, “Nuts and Bolts”, described the basic elements of the program (see table 4.2).

The marketing and advertising phase was important for gaining acceptance as an
integral part for the successful delivery of the family education program. To attract
family members, the program needed to be marketed in the community in which it was
delivered. Community outreach or marketing encompassed many of the strategies that the
program suggests (Burland, 1993). Any advertising for the program had to encourage the
target group to participate. Therefore, community organizations, religious organizations
and places of employment were targeted for poster advertising. Also, the community
activities section of local newspapers provided free advertising for voluntary organizations.

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Table 4.2

Elements in the Nuts and Bolt Chapter (Burland, 1998)

-the length of the course

-participants who qualify

-group size

-choosing a site

-mixing relative groups

-mixing “old timer” and “new comers”

-how to deal with drop-outs

-how to deal with late-comers

-working out leadership roles

-role of the support person

-job description of the resource person

-course video

-the pre-course family visit

-course description

-teaching skills

-principles of family support

-group process skills
-connecting education classes to support groups
-educator attributes that assist in delivering family education
-principles of helping families come through trauma
-how to deal with someone wishing to take the course who has a mental illness
themselves

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Local cable television companies provided free messages on their community calendar
channels. The advertising strategy also encouraged professionals to accept the program,
and refer family members to the program. Therefore, promotional material geared to
professionals was needed to elaborate how the program can facilitate the delivery of their
services. For example, emphasizing that family intervention reduces relapse rates in
individuals with mental illness assisted in marketing the program to physicians.

The content of the twelve-week program is shown in table 4.3. Burland (1998,
undated) developed the content based on the needs assessment and the trauma-andrecovery model..

Phase n of the Familv-to-Familv Education Program

This section provides general information about phase II of the Familv-to-Familv
education program as it began to be implemented in BC. The second program phase
involved the training of support program facilitators as co-leader pairs and addressed the
delivery of support groups to graduates of the first phase. The training program entailed:
an introduction, program overview, role of the facilitator, communication skills, facilitation
skills, common group problems, problem solving, support group exercises, support group
logistics, how to introduce Familv-to-Familv support groups to existing support groups,
and the facilitator as a person (Mayeux correspondence, July 24,1996).

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Table 4.3

Familv-to-Familv Education Proaram Content
(Burland, 1998, p.1.26)_

C iass Number

C lass Content

1

Introduction to Family E d ucation

2

S y m p to m s of S ch izo p h ren ia, M ajor D ep ressio n ,
Bipolar D isorder; G etting th ro u g h critical p erio d s

3

S u b ty p e s of D ep ressio n a n d B ipolar D isorder; P an ic
D isorder a n d OCD; Telling our sto rie s

4

B asics a b o u t brain biology a n d th e c a u s e s of brain
d iso rd ers

5

Problem solving w orkshop

6

M edication review

7

Em pathy; Inside m ental illness

8

C om m unication skills w orkshop

9

S elf-care

10

R ehabilitation; Making c h o ic e s for recovery

11

Fighting stigm a; A dvocacy

12

Evaluation, certification, an d celeb ratio n

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Table 4.4 Familv-to-Familv Proqram Principles of Support
(B urland, 1998b, p. 10)

Number Principles
1

W e will s e e th e individual first, not th e illness.

2

W e recognize m ental illn e sse s a re brain d iso rd ers.

3

W e aim for b e tte r coping skills.

4

W e find stren g th in sh arin g e x p erien c e s.

5

W e reject stigm a in o u rse lv es a n d o th ers.

6

W e w on’t ju d g e a n y o n e ’s pain a s le ss th a n o u r ow n.

7

W e forgive o u rse lv es a n d reject guilt.

8

W e e m b ra c e hum our a s healthy.

9

W e a c c e p t w e c an n o t resolve all problem s.

10

W e e x p ec t a b e tte r future in a realistic way.

11

W e will n ev er give up hope!

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This second phase reinforced the principles delivered in the education program.
The Family-to-Family principles of support are shown in Table 4.4. These principles in
tandem with standard meeting format guidelines and a family-to-family approach
contributed to a successful support group program (Mayeux, undated). Using a structured
format to keep the support meeting on track is fundamental to having meaningful group
discussions that helped the family member participants. This phase of the program re­
emphasized the skills learned in the education phase and the value of experiential
knowledge in providing peer support.

Program Management Mechanisms

Burland established a program management mechanism. When first introducing
the program to a new venue, Burland used contracts to ensure fidelity to the program
(Journey of Hope Contract, 1994). Once the contract to follow the program was signed, it
was expected that the program deliverers would follow the program management
mechanism described in the “course forms” section of the program manual (Burland, 1998,
1993).

The first program management form is the Class Sign-up Sheet for use in classes 1
through 3. All attendees sign the form with their name and contact phone numbers
(Burland, 1998). The form also includes the location of the class and the name of the
affiliated organization. This form will be sent “to the state or provincial program director
after class 3” (Burland, 1998, p. CF-3).

The second program management form is the Class Composition Report. This
form includes information about the course location, the course start date, and the names
and contact numbers of the teachers. The co-educators include the names of all attendees
(even those who have dropped out), the relationship to their ill family member, and their
relative’s diagnosis (Burland, 1998, p. CP-6). If a person dropped out, the co-educators
were instructed to place a “D” beside their name. A copy of the form was made and the
original was to be sent to the provincial program director after class 3. In BC, this
information was sent to Preston until her death, then it was sent to deLange until 1999.
Starting in 1999, the material was sent to the BCSS provincial office.

The third form to be delivered to the program directors is the Final Census Form.
This form includes information about the course location, the course finish date, and the
names and contact numbers of the teachers. The attendees fill in their name, address,
phone number, their willingness to join NAMI or BCSS, continue to be members of NAMI
or BCSS, and availability to volunteer.

The family co-educators fill-in the Final Census: Class 12 form for delivery to the
program directors (Burland, 1998, p. CF-9). This form elicits information about the course
location, and contact teacher. It requests information about the total number of people who
started the course, and the total number who finished the course. It wanted to know if the
dropouts were visited before the course, and whether the dropouts were drop-ins. The form
requests the names of the dropouts and the reasons for dropping out. Also, it includes the

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number of evaluations that were not collected. These forms also included reminders for
the educators to collect and include the class evaluations, final class list, and both teacher
evaluations.

The fifth form to be included is the NAMI Familv-to-Familv Program Course
Evaluation form. This form includes “a family information portion with the date, course
location, information about the caregiver, and information about the relative of most direct
concern to you who has a mental illness” (Burland, 1998, p. E .l). The second part of the
evaluation form is devoted to program evaluation. This section consists of three short
answer survey questions and three questions about content and presentation. The first part
asks for your “overall impression of the NAMI Familv-to-Familv education course. How
do you feel you have benefited from taking the course?” (Burland, 1998, p. E.2). The
second part asks about possible improvements and “how the course has enriched your
experience” (Burland, 1998, p. E.2). The third part asks for comments about the teachingsupport team leading the class. For the next question, participants were asked to rate the
course and presentation on a scale from one to five where one was poor, and five was
excellent. The first area assessed was about diagnostic, research, and medical information
found in classes 2, 3, 4, and 6. The second area assessed was problem solving and
communication techniques found in classes 5, and 8. The third area assessed was learning
about feelings, self-care and empathy found in classes 1, 7, and 9. The fourth area assessed
was learning about rehabilitation, recovery and advocacy in classes 10 and 11. The sixth
and seventh areas assessed were whether the course content and presentation met the
participant’s expectations. Expectations were scored on a scale from one to five where one

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was equivalent to “did not meet my expectations” and five was equivalent to “exceeded my
expectations” (Borland, 1998, p. E.3). The final question in the evaluation is, “as a result
of taking the course, do you feel more confident and more comfortable dealing with your
family member who has a mental illness?” (Burland, 1998, p. E.3). The participants were
instracted to check one of the following: not at all; somewhat; a good deal; or a great deal.

The final program management form is the Teacher Evaluation form. This form
elicits information about the course location, teacher’s name and date of evaluation. The
family educators were asked four questions in an open-ended question format. The first
question is, “give us your overall impression of how the course was received by your class”
(Burland, 1998, p. CF-11). The second is, “tell us how the teaching experience affected
you” (Burland, 1998, p. CF-11). The third question is, “would you be willing to teach the
course again next year?” (Burland, 1998, p. CF-11). The final question is, “tell us of any
ideas, suggestions, comments, etc., you might have about the course or the training, now
that you have taught the course” (Burland, 1998, p. CF-12).

The use of these forms enabled the program directors to monitor and evaluate the
program. The improvement-focused evaluations were used to revise the program based on
the comments of participants and educators for the second edition of the education
program.

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Chapter 5

Methodology

A case study method was chosen as the method for conducting a formative
evaluation of the implementation of the Familv-to-Familv education program. Creswell
(1998) supported the use of this qualitative approach as an appropriate choice for
evaluation research. He noted,
“a case study is an exploration of a bounded system...over times through detailed,
in-depth data collection involving multiple sources of information rich in context.
This bounded system is bounded by time and place and it is the case being studied a program.... Multiple sources of information include observations, interviews,
audio-visual materials, and documents and reports. The context of the case
involves situating the case within its setting, which may be a physical setting or the
social, historical, and/or economic setting for the case.” (Creswell, 1998, p. 61)
Posavac & Carey (1997) described an improvement-focused model in which the evaluator
notes discrepancies between what is planned, projected, or needed, and what was observed,
then makes recommendations for improvement. They further stated that there needs to be
clear explanation of “what is not occurring as expected” (Posavac & Carey, 1997, p. 27).

In this study the question of interest was how the Familv-to-Familv education
program came to be implemented, rather than program outcomes. If outcomes were to be
evaluated, this researcher would have assessed outcomes using pre-test and post-test
standardized tests (from the literature) of knowledge about the disease etiology and
treatment, burden scales, cross-sectional analysis of ill relative’s relapse rates, and usage of
mental health services.

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The methods employed in this thesis to build a complete picture of the
implementation of the program included:
1. A review of archival reports, brochures, and administrative reports to describe
voluntary organizations and BCSS
2. A review of the academic and self-report literature of the educational needs of
family members of people with mental illness
3. A review of the literature on program implementation
4. A review of government documents to describe British Columbia and
Northwest British Columbia and to provide an overview of the mental health
system
5. A analysis of the interviews of key informants on the selection and
implementation of the Familv-to-Familv education program
6. A review of the correspondence about and funding proposals for the Familv-toFamilv education program
7. A review of both editions of the Familv-to-Familv education program itself
8. Experiential knowledge arising from the role as regional coordinator of the
Familv-to-Familv education program
9. Observational data and reports from the Familv-to-Familv education program.

The key informants selected for the interviewing process included the volunteer
program implementors, Elaine Preston and Margaret de Lange. They were selected
because they had the knowledge of their plans for implementing the Familv-to-Familv
education program. Furthermore, this knowledge was not available in the program

93

archives. The taped interview with Elaine Preston was conducted over the telephone on
April 10, 1998. Both the interviewer and interviewee were in their own homes. The taped
interview with Margaret deLange was conducted using a face-to-face interview on June 19,
1998 at a conference in Kelowna, EC. Both interviews were transcribed and analyzed.
Other key informants were four members of the Board of Directors of BCSS in 1994.
Selected members were asked about the board discussions about the presentation by Elaine
Preston and Margaret deLange in 1994.

The key informant interviews involved the use of the following open-ended
statements or questions:
1. Tell me about how you decided to choose the program.
2. What was it about the program that made you feel that it was what you wanted?
3. What did you know about the people who developed the material?
4. Did you look at other programs?
5. Tell me about the decision to try the program.
6. What happened when you brought the program to the BCSS board?
7. Did you try to get funding?
8. Tell me about your plan to implement the program.
9. Did you perform a provincial needs assessment?
10. When you started did anybody look through the literature showing that there
was a role for family education?
11. How was the pilot received?
12. Tell me about your personal experience with mental illness.

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13.

Is there anything that you would have done differently as you reflect back?

During the interview process, the interviewer asked other questions when necessary to
clarify statements made by the key informants. The interview process provided
information about the education phase (phase 1) of the program but no information on the
implementation of support group phase (phase 2).

The collection of information was impeded by the death of one of the key
informants, Elaine Preston. This resulted in the need to collect correspondence to other
regions, other BCSS coordinators, and BCSS members throughout the province in order to
complete the picture of the implementation of phase 1. This death also affected the ability
of this researcher to collect archival information about the implementation of the Familvto-Familv education program in British Columbia. Previous to Preston’s death the transfer
of archival information to this author was free flowing, whereas after her death, the
archival information released was controlled. This control resulted in recall bias that this
author could not control. However, it is important that this bias be acknowledged.

The author of this thesis used her own personal experience and records as a source
of information and had an insider relationship with the implementors and BCSS. The
researcher was responsible for the implementation for the Familv-to-Familv education
program in northwest BC. Therefore, bias in the collection and interpretation of the data
could be problematic. The foremost type of bias of which to be aware in this study was
recall bias (Hennekens, et. al., 1987). Recall bias occurs when events are self-reported in a
non-comparable manner (Hennekens, et. al., 1987). The records of this author were not

95

comparable because she was the only person responsible for the implementation of the
Familv-to-Familv education program in northwest BC. In some cases, the author was able
to confirm information by debriefing volunteer family educators, specifically, Eileen
Callanan from Terrace. Another area of bias which needs to be discussed is the objectivity
of the researcher when she is an active participant in the implementation and evaluation
process. This author tried to objective when self-evaluating her implementation of the
Familv-to-Familv education program in northwest BC. The process was already started
before her employment in 1995, thus she had no control over the early implementation
events. It took almost a year to write and implement a more effective plan for
implementation, hased on community consultation, in northwest BC. In addition, because
this case study involved active participation, it was impossible to blind the author in order
to maintain an absence of bias in analysis and objectivity. The selection of topics to be
evaluate was biased because the selection was based on her experiences as a participant
rather an outside observer. It is feasible that another author may have selected different
topics to be analyzed. A second source of selection bias occurred through the selection of
the key informants. Other key informants could have been selected. Some potential key
informants were not selected because they were new employees, new board members,
and/or the researcher felt that the data collected from other key informants was reproduced
dependably.

Another type of bias of which to be aware was interviewer bias when collecting
information. Since the researcher was aware of the potential for recall and interviewer bias
prior to conducting the research, the key informant interviews were designed to solicit

96

similar information from the volunteer implementors. This author used the same questions
for both key informants. When analyzing these interviews, the reliability of most of the
data used was strengthened because they were confirmed by both key informants.

Analvsis Plan

The analysis plan included sequentially outlining the implementation events using
the key informant interviews, Familv-to-Familv Education program correspondence, and
reports, followed by the examination of the facilitators of and barriers to implementation of
the program.

Information about the participants was analyzed using the data collected

from the program evaluations. Information about the non-participants was collected from
the personal experiences of the researcher and one teacher, Eileen Callanan. At the end of
this section, specific recommendations targeted to improve the procedures for the
implementation of the Familv-to-Familv education program will be suggested. Also,
improvement focused recommendations will be directed to the program developers,
program implementors, BCSS, and Mental Health System in northwest British Columbia.

97

Chapter 6

Implementation

This chapter expands more fully on the implementation of the Familv-to-Familv
education program in BC and northwest BC, based on the methods outlined in the previous
chapter. Additionally, this chapter analyses some of the barriers and facilitators to
implementation. This analysis will enable the generation of focus-improvement
recommendations.

Plan for Implementation of the Familv-to-Familv Education Program in British Columbia

Initially, there was no comprehensive written plan for the implementation of the
Familv-to-Familv education program. However, the implementors of the program had a
strategy for the delivery of the program. From the key informant interviews, Preston and
deLange (1998) knew that they needed the following:
• financing for the program
• to pilot the program
• family support for the program
• BCSS support for the program at the branch and provincial level
• professional support for the program
• a method for delivering the program

throughout BC.

Figure 6.1 presents a temporal analysis of the implementation of the Familv-to-Familv
education program. This time line is a result of the analysis of key informant interviews
with Elaine Preston and Marg deLange, and correspondence, and archival information from

98

the Familv-to-Familv education program. This time line reflects the accurate name of the
program at the time of each step in implementation. Critical points that influenced the
direction of the implementation will be discussed in temporal order.

The lack of endorsement by the BCSS board of directors in 1994 greatly influenced
the implementation. When asked, some board members told the researcher that they did
not understand what the program’s expected outcomes were and felt that BCSS did not
have sufficient resources to fund the program. Other board members felt that there was no
plan and they felt that there was nothing to endorse. Because this program focused on
schizophrenia and other mental illnesses, this broadened focus was unacceptable to some
board members of BCSS. Unfortunately, this rejection was misinterpreted as a personality
conflict by Elaine Preston. The board members who voted to approve the plan had existing
trust relationships with the volunteer implementors and this trust relationship positively
affected their level of understanding the program.

As a result of the vote to reject the endorsement of the program, the members of the
unincorporated Langley Branch of BCSS were motivated by Preston with the support of
deLange to use the resources of the afore-mentioned branch. The Langley branch raised
the funds to purchase the rights to the program using funds raised through a casino gaming
license (Preston, 1998). In August 1994, Preston signed a contract with the Louisiana
branch of National Alliance for the Mentally 111 (NAMI) to deliver the program (NAME
Contract, 1994). The Louisiana branch of National Alliance for the Mentally 111 (NAMI)
acted as the official agent for Joyce Burland, the originator of the program.

99

In January, 1995, the pilot delivery of the program in Langley and Maple Ridge was
well received by family members (deLange, Preston, 1998). The pilot was considered a
success because the participants told the implementors in the evaluations that it met their
needs and that the program should be delivered everywhere in BC. The implementors
communicated the results of the evaluations to the staff of the Adult Mental Health
Division, BC Ministry of Health and other professionals. The evaluation results spread
through informal communication channels (ibid.).

In spring 1995, professional support from the Provincial Adult Mental Health
Division influenced the Canadian Mental Health Association, BC Division (CMHA) to
fund the program from the provincial mental health education fund administered by
CMHA and now administered through the provincial office of BCSS (Preston, 1998).

After deLange and Preston were trained to train other volunteer family educators in
May, 1995, they proceeded to recruit family educators from branches and the membership
of BCSS (Correspondence, 1995). Arrangements were made to deliver training sessions in
various health regions with deLange and Preston (Personal communication, 1998). In
1996, Preston and deLange were trained to deliver training of volunteer family support
group facilitators (Correspondence, 1996). Thus, support group facilitator training begins
in the fall of 1996 (Preston, 1998).

100

As the success of the program grew, greater numbers of family members and
professionals accepted the program. The successful pilot drove the training of educators
for the education program and training for the support group facilitators. The program
expanded and was delivered in most areas in BC. The family members from these health
regions in BC found that the program met their educational requirements as shown by the
Familv-to-Familv program evaluations. Due to the program’s success and influence from
the grassroots of the organization, the BCSS board of directors unanimously approved
Joumev of Hone education program as an official BCSS program in June 1997 (Minutes
BCSS Board Meeting, June 1997). Additionally, the board of directors appointed Elaine
Preston to be the volunteer provincial coordinator (Minutes BCSS Board Meeting, June
1997).

The Joumev of Hope education program name changed in the Fall of 1997 to the
Familv-to-Familv education program due to legal issues in the United States (NAMI
Correspondence, 1997). The Journey of Hope education program continues as an eightweek program offered through Health Maintenance Organizations instead of NAMI
(NAMI Correspondence, 1997, Journey of Hope Correspondence, 1997). Preston and
deLange decided to deliver the NAMI Familv-to-Familv education program due to their
own personal commitment to the twelve week program designed by Joyce Burland
(deLange 1998, Preston, 1998).

101

Figure 6.1

Time Line for the Implementation of the Familv-to-Familv Education

Program Phases 1, and 2
Elaine Preston heard
presentation on the Journey of
Hope at Summer 1993
lAPSRS in N ew Orleans

Elaine told Marg deLange about
Borrowed a copy o f the Journey
o f Hope Family Education
Teacher’s Manual from Oregon
AMI, Fall 1993

Elaine & Marg felt the program
was worthwhile and should be
delivered in BC

Elaine & Marg made a
presentation to the BCSS
Board of Directors with a
request for approval and
funding. The board turned
down the request. January
1994.
Langley Branch o f BCSS decided
to try to fund the program using a
casino license for the funds.
Spring 1994. Elaine was Branch
President at the time and Marg is
the BCSS coordinator for that
region.

Sufficient funds are raised to
purchase rights to the program

Elaine Preston signs the contract to
deliver the Journey o f Hope
program in BC on August 29, 1994.

Elaine & Marg are trained by
Joyce Burland to be Family
Educators. January 1995 in
Mission, BC

102

Figure 6.1

Time Line for the Implementation of the Familv-to-Familv Education

Program Phases 1, and 2 (continued)

Elaine & Marg delivered the Journey of
Hope in Langley and Maple Ridge
starting February 1995. PILOT

Elaine & Marg trained to train the Family
Educators, May 1995 in St. Louis, MO.
Apply for and receive funding from the
Provincial Education Fund administered by
CMHA, BC Division. Support from Ministry
of Health, Mental Health Services Division,
Staff Members, Arnold Skulmoski and Anne
Bowles.

Letters sent to branches about the Journey
of Hope program. Asked for funding and
volunteer educators.

Trained family educators at Camp Luther in
lower mainland of BC. Interested
volunteers came to lower mainland to be
trained in Fall 1995. Expenses were
covered by Provincial Education Fund and
donations from branches.

Delivery o f the program expands into
other areas o f the lower mainland.

Training o f family educators starts in the
Thompson, Kootenays, Northern Interior,
Caribou, Northwest, and Peace-Liard in
1995 & 1996.

Training o f family educators in Terrace
in June 1996
Journey o f Hope Program delivered in
Journey o f Hope delivered in:
September 1997, January 1998, January
1999.
Kitimat, starting in September 1997.
Prince Rupert, starting in September
1997.
Smithers, starting in March 1999.

1996.

\
103

Figure 6.1

Time Line for the Implementation of the Familv-to-Familv Education

Program Phases 1, and 2 (continued)

Elaine & Marg trained as Support
Group Trainers in Illinois, 1996
Journey o f Hope Program
Evaluation at University of Illinois
at Chicago.

Support Group Facilitator training
starts in BC in Fall 1996.

June 1997 BCSS Board of
Directors approves Journey o f
Hope as a BCSS program with
Elaine Preston, as the volunteer
Provincial Coordinator

Journey o f Hope Education
Program renamed as the NAMI
Familv-to-Familv Education
Program in 1997 due to legal
issues with Journey o f Hope
copyright in the United States.

C stays with the NAMI Familvito-Familv Education Program.

Family-to-Family Program Second
Edition was released in November
1998.

journey of Hope Program
continues in the CS us un eightweek education program in
January 1998,

104

As part of the implementation strategy for the Familv-to-Familv education program,
letters and information packages were sent to the branch presidents of BCSS. In Terrace,
the branch president received this information and the branch decided to run the training
program in 1996. Fourteen volunteer family educators were recruited and trained in June
1996. In Kitimat and Terrace, the family educators delivered the Familv-to-Familv
education program commencing in September 1996. There was no plan for the
implementation of the program in northwest BC at that time. However, in 1997, a plan
was developed by the northwest regional BCSS coordinator to implement the program. As
of May 1999, the program has been delivered five times in Terrace, two times in Kitimat,
and one time in Prince Rupert, and Smithers.

Facilitators of the Program Implementation in Northwest British Columbia
Communitv Outreach Strategv

The community outreach strategies and the elements in the “Nuts and Bolts”
chapter of the manual facilitated the delivery of the Familv-to-Familv education program
(Burland, 1998,1993). Commencing in 1996, family educators in Terrace, this researcher,
and a Northwest Community College Mental Health Worker practicum student charged
with the task of assisting the delivery of the program in Kitimat implemented the suggested
community outreach strategies. The practicum student was working under the supervision
of the BCSS coordinator for a three-month placement.

The community outreach strategy utilized the community development planning
model described in chapter 3 (Dignan & Carr, 1992). The BCSS coordinator designed and
105

carried out a specific community awareness campaign that strategically targeted specific
professional groups. This campaign was designed to demonstrate to professionals how the
program could make their work easier. For example, when the letter was targeted to the
social worker at the hospital whose role it is to inform families about a specific mental
illness and plan for discharge from the hospital, the letter explained that the program
teaches family members about the etiology, and treatment of mental illness and gives the
family members a discharge checklist to assist the social worker. The social worker from
Mills Memorial Hospital stated, “it makes my job easier when I work with graduates of this
program” (Braid, 1999, personal communication).

The “Nuts and Bolts” chapter, outlined in Table 4.2, empowered the educators with
some skills to effectively deliver the classes (Burland, 1998, 1993). Family educators selfreported in evaluations and in debriefing conversations with this researcher. They reported
that the tips in handling the differing roles of family members were important for
developing empathy for parents, siblings, children, and/or friends (Burland, 1998, 1993).
Additionally, the educators reported that the section on mixing “old timers” and
“newcomers” proved invaluable when trying to encourage newcomers to be hopeful about
recovery against the backdrop of old-timers whose relative with a mental illness had been
treated with older and less effective strategies and typical anti-psychotic medication with
many side effects. The educators further reported that this section assisted them to
accentuate the differences between then and now and encouraged a hopeful attitude. In the
second edition of the program, the section on group process skills assisted the educator’s
understanding of the delivery of the program (Burland, 1998). In 1999, the checklist on the

106

attributes of a family educator (shown in Figure 9.1), developed by a volunteer family
educator and the BCSS regional coordinator was helpful when the Terrace group recruited
new trainees. In retrospect, such a checklist would have assisted the BCSS coordinator in
the initial family educator recruitment drive.

Pre-course Familv Visit Strategy

Burland (1993, 1998) designed a pre-course visit by the family educators to the
potential program participants. For the delivery of the program in northwest BC, the pre­
course family visit was the most effective facilitator of the program. The staff of the
psychiatric ward at Mills Memorial Hospital in Terrace sent some potential participants to
the program without referring these participants to the educators for a pre-course visit. As
a result, seven drop-ins occurred. The course drop-ins were friends of a young individual
newly diagnosed with schizophrenia, a professional and his/her family, a patient in the unit,
and his/her spouse. This serendipitous occurrence gave the family educator and this
researcher an opportunity to make comparisons between participants with a pre-course visit
and the ones without the visit. The participants with a pre-course visit established a level
of safety and comfort with the educators and understood the reasons behind the course,
whereas, the drop-ins had no relationship with the educators and appeared to feel
threatened. The drop-ins tended to be argumentative in the class. They argued with the
educators about the diagnosis of mental illness, treatment strategies, and the use of
medications. The BCSS coordinator and one of the family educators intervened and made
visits to the drop-ins in order to clarify what the program was designed to deliver. After

107

these interventions, the drop-ins decided that they would receive their support and
education on a one-on-one basis delivered by family volunteers or the BCSS coordinator.
Additionally, since the program targets friends and family members of individuals with a
mental illness, the family educators considered the participation of the patient, the
professional, and his/her family inconsistent with the program’s orientation. After this
occurrence, the BCSS coordinator met with hospital staff and discussed with them about
making appropriate referrals to the Familv-to-Familv education program. It is noteworthy
that the pre-course visit would have made the drop-ins feel more comfortable and would
have given them the opportunity to determine whether the program was appropriate for
them.

In addition, the family educators in one northwest community did not perform the
pre-course visit resulting in a dropout rate of 50% (Final Class Census Forms).

Program Content

In northwest BC, another facilitator of the program was the content of the education
program itself. This content reflected the needs of family members from the pre-dominant
culture in the region. This content and the word-of-mouth reports of the content enabled
the educators to attract family members to the program.

108

Barriers to Program Implementation in Northwest British Columbia

Systemic Misunderstanding of the Program

In northwest BC, the greatest barrier to the implementation was the lack of
understanding of the program’s philosophy, goals, and expected outcomes. It became
apparent that this lack of understanding was systemic and included family members, the
BCSS coordinator, professionals, and consumers. Initially, there were no referrals from
professionals, and it was very difficult to recruit program participants. The initial
recmitment was mostly due to the personal relationships with volunteer family educators
and the BCSS coordinator. Additionally, because the program materials did not clearly
explain the program, the coordinator found it difficult to put together a funding proposal
and an information package. The promotion of this new, American program in northwest
BC would have been easier if there had been supporting documentation from the program
developers. A single page describing the program’s philosophy, goals, and expected
outcomes would have been more effective in assisting the volunteer educators to gain
acceptance of and local funding for the program. This documentation would be targeted at
professionals who would refer family members to the program. This researcher found that
psychiatrists, doctors, psychiatric nurses, social workers, and other professionals needed to
be persuaded to make referrals. The use of published reports and self-report literature
would be a solution to this identified barrier. Additionally, an explanation of the expected
outcomes would increase accountability by setting a standard by which health authorities
could measure performance.

109

Another potential facilitator for the understanding of the program in northwest BC
would be a written report of the success of the pilot programs in Langley and Maple Ridge.
The BCSS coordinator could have taken the written results of the pilot to mental health
service providers. Unfortunately, this author received no information about piloting the
program until she started the process to research this thesis topic.

Some consumers felt very angry about an education program targeted towards
family members when there is no comprehensive education program targeted towards
consumers of the mental health system in northwest BC. This anger was directed towards
the individual family members, the BCSS coordinator, and some family educators. The
anger directed towards family members by their relative with a mental illness caused
family members to refrain from participating in the program. To alleviate, some of these
bad feelings, the BCSS coordinator organized a conference in November 1998. One of the
speakers was the volunteer BC coordinator of the BRIDGES program who discussed this
program and Schizophrenia Anonymous (Conference [Brochure], 1998).

Funding Barriers

Another barrier to the delivery of the Familv-to-Familv education program was the
discrepancies in the Mental Health Division, BC Ministry of Health’s implementation of
the Consumer and Family Involvement Fund in different communities in the northwest
region. In Terrace and Kitimat, the fund was implemented as a Consumer and Family

110

Involvement Fund (CFEF) whereas in Prince Rupert and Smithers it was implemented as a
Consumer Involvement Fund (GIF). In 1997, the BCSS coordinator applied for funds from
the Prince Rupert Consumer and Family Involvement Fund for the delivery of the Familvto-Familv education program in that community. The request was denied by way of a
phone call because there was no Consumer and Family Involvement fund, only a Consumer
Involvement fund. At this point, the BCSS coordinator was confused. Staff from the
Mental Services Division clarified the situation as described in the next paragraph. Funds
were obtained from an alternate source and the program was delivered in Prince Rupert.
The BCSS coordinator informed the acting director of Mental Health Services for the
Northwest Community Health Services Society (NWCHSS) about this discrepancy and the
contract for Prince Rupert was amended to reflect family involvement commencing in the
1998-1999 fiscal year. In 1999, the BCSS coordinator faced similar problems when
applying for funds to deliver the Familv-to-Familv education program in Smithers. Again,
the BCSS coordinator had to inform the acting director Mental Health Services for
NWCHSS that the approval process was delayed due to the lack of clarity about family
involvement funding. The Consumer and Family Involvement Funds contract was
amended to reflect family involvement commencing in the 1999-2000 fiscal year.

The Consumer and Family Involvement Funds were included in 1992 BC Ministry
of Health Mental Health Plan (Skulmoski, 1998, personal communication). The language
of the consumer and family involvement in the 1992 plan is nebulous about the Consumer
and Family Involvement Fund. The 1992 plan clearly states that “$3.4 million is allotted to
new Consumer [and] Family Initiatives” (Ministry of Health, Mental Health Services

111

Division Orientation Program Package, 1992, p. 2). However, it also states that “Mental
Health Services will increase the number of Mental Health programs and services managed
directly by consumers (to 10% of all Mental Health program)” (Ministry of Health, 1992,
p. 2). This ambiguity resulted in differing interpretations for the implementation of the
same fund. In some communities and regions in BC, the fund was set up as a Consumer
and Family Initiatives fund (in Terrace, Kitimat, South Fraser, Prince George, Okanagan,
Thompson, Kootenays, and others) and in others the fund was set up as a Consumer
Initiatives fund (in Prince Rupert and Smithers). This incongruency demonstrated the need
for standards in the provision and funding of Mental Health Services.

Volunteer Burnout

Another barrier to implementation was volunteer burnout. Three volunteer
educators of fourteen quit teaching the program because they felt that they could no longer
volunteer. One discontinued teaching because her/his relatives with a mental illness had a
relapse. Another volunteer ceased teaching because s/he found it difficult to teach the
course in balance with her/his family responsibilities. The third volunteer to burnout found
that the pre-course visits and advertising campaign were too difficult to manage and
maintain her/his business interests. The BCSS coordinator developed some strategies to
reduce volunteer burnout. One strategy to reduce burnout was to ensure that workload of
volunteer tasks was shared. It became apparent that the BCSS coordinator needed to meet
with the volunteer family educators and ensure that the tasks were shared in an acceptable
manner. As the program in the northwest evolved, the BCSS coordinator had to cover

112

more and more of the administrative tasks including the preparation of funding proposals
and administration of funds. To assist with the administrative workload, the BCSS
coordinator used Mental Health Worker Program students from Northwest Community
College until the program was canceled in 1996^ . Students from Kitimat and Hazelton did
their practicum placements with the regional BCSS coordinator. Using community
development techniques, some of their duties involved locating and engaging family
members of people with a mental illness. Additionally, with supervision, one of the
students did the budget preparation, community advertising, and pre-course interviews for
the initial delivery of Familv-to-Familv education program. Thus, these students
drastically reduced the workload and volunteer burnout of family educators by recruiting
participants, doing home visits, and doing administrative work (Northwest BCSS
Coordinator Files, 1996-1997).

Complexity of the Language of the Program

An additional barrier to implementation of the Familv-to-Familv education program
was the complexity of its language. Family members have voiced differing opinions about
the language complexity. One said, “I need to know and understand the way that doctors
talk”(Program evaluation, 1996). Others voiced the opinion that the language was
intimidating, both in the course and when spoken by doctors. The first edition of the
program had no explanation of the terminology used in the program. A family educator

^ In 1996, Northwest Community College announced plans to discontinue the Mental Health Worker
Program. Thus, the last cohort to start the program commenced in September, 1996. This class graduated in
June, 1998 (Cheryl Brown, Personal Communication, 2001). Thus, the last practicum placement with the
BCSS coordinator was in the fall o f 1997.

113

from Terrace developed a glossary of terms during the delivery of the Familv-to-Familv
education program for the first time. This glossary facilitated the
learning of participants by giving them a tool to understand the material in the program.
The glossary was forwarded to the provincial coordinators of the Familv-to-Familv
education program in January 1997. The evaluation of the program by Pickett et al (1997)
recommended that a glossary of terms with the appropriate pronunciations would enable
the learning by the participants. Burland (1998) developed a glossary for the second
edition of the Familv-to-Familv education program (Burland, 1998). In northwest BC, the
family educators now use both the program’s glossary and the locally developed glossary
because the locally developed glossary defined words not found in the Familv-to-Familv
education glossary.

Geographical Isolation and Distances to Travel

Another barrier to implementation was the “relatively large distances between the
small communities” in the northwest region (Report of the Northern and Rural Health Task
Force, 1995, p. 7). The BCSS coordinator was charged with implementing the Familv-toFamilv education program in a region where the complexity of each community was
difficult to understand from outside the individual communities. Because the BCSS
regional coordinator lives in Terrace, she had a better insight into the dynamics of the
community of Terrace than other communities. The relatively large distances between
these communities tend to isolate them making it difficult for an outsider from Terrace to
develop trust relationships with the consumers, family members, and professionals.

114

Chapter 7

Participants and Non-Participants

This chapter deals with the characteristics of participants of the Familv-to-Familv
education program. This analysis relates to the question of whether the program reaches
the target population and whether the program meets the needs of the multi-cultural crosssection of the target group. In addition, this chapter examines some of reasons given to a
family educator, and the researcher for not participating in the program.

Trained Familv Educator Participants

In June 1996, fourteen volunteer family educators were trained in Terrace. These
educators came from Terrace, Kitimat, Hazelton, Prince Rupert, New Aiyansh, and
Greenville. Seven of the trainees had First Nations ancestry, six are from the predominant
culture, and one person originated from outside of Canada. Of these fourteen-trained
educators, only six female trainees from the predominant culture delivered the program.
These trainees taught the course from one to seven times each. It was noteworthy that no
trained family educators from a First Nations background chose to deliver the program due
to different needs.

Recruitment of trainees and participants was a challenge in northwest BC. There
was a “limited pool of people for leadership positions” (Report of the Northern and Rural
Health Task Force, 1995, p. 8). This affected the recruitment of volunteer family educators
for the program due to limited number of people willing to take a leadership role.

115

Additionally, because less than half of the trainees delivered the program, recruitment was
problematic and needed to be examined. Some issues were raised by the trained volunteer
family educators which prevented them from delivering of the program. The high literacy
level of the course materials influenced trainees with lower literacy skills to discontinue
their participation in the delivery of the program. Recruitment was also initiated before the
BCSS coordinator had any in depth knowledge of the program because no materials about
the program had been forwarded to the coordinator by the program implementors (see
chapter 6). The initial recruitment strategy involved a quick process with assistance from
mental health staff in Terrace and Kitimat, and psychologists from Hazelton and New
Aiyansh. No referrals for training were given by Mental Health staff in Smithers and
Prince Rupert. The lack of information about the program philosophy, goals, and expected
outcomes limited the ability of the coordinator to recruit appropriate potential trainees. A
sample profile of a family educator could be used as a guide for volunteers and staff
charged with the task of recruiting volunteer family educators. There still are trained
volunteer family educators with First Nations ancestry in this region who could be
delivering the program.

The Need for Mentorship

In the First Nations community, the trained volunteers chose not to deliver the
program. This occurred because the volunteers wanted more support by having the BCSS
coordinator provide a mentorship role. Unfortunately, due to high travel costs estimated to
be $1680.00 per community for three communities, the BCSS coordinator could not

116

comply with this request. With adequate resources, this request for true mentorship could
have met the needs of one group of First Nations family educators in their community.
This vignette demonstrates the need for an alternative training and delivery strategy to
accommodate differing cultural needs.

Training More Volunteers

In January 1999, the need to train more volunteer family educators in Terrace was
identified. In the northwest with its remote and rural characteristics the number of new
volunteer family educators, who require training at any one time is small, usually one or
two people. This does not justify the cost of flying a trainer in from the lower mainland.
To access the out of town training sessions is problematic as it interferes with work
schedules and usually involves trainees taking off work without pay. This is unacceptable
for volunteers. Thus, there has been no additional family education training in northwest
BC as of June, 1999.

Support Group Facilitator Training

Another issue is that this researcher as the BCSS coordinator had received no
written information from the provincial Familv-to-Familv education program coordinators
about phase It of the program during the time period studied in this thesis. Therefore, the
coordinator has no information to entice family members to take the training. Another gap
is in the information about the support group program in the education phase. A strong

117

linkage between the support group phase and the education program is vital for
participation of family members, but there has been no clear concise information of the
support program philosophy, goals, and expected outcomes. This lack of information
contributed to the reticence of the BCSS coordinator in initiating the training and
implementing this phase of the program. Another factor considered by this researcher is
that most of the graduates of the Family-to-Family education program do not use the
current infrastructure of monthly family support groups. Therefore, the question arises
whether or not family members will participate in the Family-to-Family support program.
Of the 59 participants who have received the program thus far, only one person expressed
the need for continued support.

Education Program Participants

In order to evaluate the implementation of the Family-to-Family education program,
it is necessary to determine who participated in the program. These data were
reconstructed by the BCSS coordinator with assistance from family educators because she
was unable to collect data from the Provincial Coordinator due to her death. As of the end
of spring, 1999, there had been 59 participants in the northwest region, 12 from Kitimat, 4
from Prince Rupert, 3 from Smithers, and 40 from Terrace. All the attendees live in the
major population centres with less than 20,000 inhabitants (Statistics Canada, 1991 cited in
Regional Health and Management Plan for the Northwest Regional Health Board, 1996).
Of the participants, 64.4% (38 out of 59) were female. The participants’ ages ranged from
11 to 75 years. Most participants (84.7%, 50 out of 59) were between thirty and sixty years

118

old. When examining the cultural background of the participants, the following data were
generated:
Predominant culture

72.9%

43 out of 59

Portuguese

8.5%

5 out of 59

Italian

5T%

3 out of 59

Chinese

T4%

2 out of 59

East Indian

T4%

2 out of 59

First Nation

T7%

1 out of 59

French Canadian

T7%

1 out of 59

German

T7%

1 out of 59

Unknown

T7%

1 out of 59

Most participants have high school equivalency or better education levels (93.2%,
55 out of 59). These data are not usually collected by the Familv-to-Familv program
course evaluation; however, it was felt by the educators in the northwest region that these
data were noteworthy and should be collected because according to Statistics Canada
(1991), 42.1% of the population had less than grade nine education. Most participants
were married (84.7%, 50 out of 59). Of the 59 participants, 26 (44.1%) lived with their
relative with a mental illness, 26 (44.1%) were in contact with their relative with a mental
illness, 5 (8.5%) were not in contact with their relative with a mental illness, and 2 (3.4%)
of the relatives with a mental illness committed suicide. In summary, the participants were
predominantly married females of predominant culture with more than high school
education and they lived with or had contact with their relative with a mental illness. The

119

Journey of Hope Evaluation Report (Pickett et al., 1997) had the typical participant profile
as being female (79%), white (92%), married (75%), ranging from age 20-94 years with an
average income between $40,001 and $50,000, and 98% with high school or more
education. In northwest BC, the participant profile was similar. However, there was no
collection of income data. From my personal observation, most participants had middle
class socio-economic status.

Most of the participants in the education program (44 out of 59, 74.6%) knew the
family educators before they took the course. In Terrace, 36 out of 40 (90%) of the
participants knew the family educators before the course, I out of 40 (2.5%) was referred
by mental health, and 3 out of 40 (7.5%) knew about the course from community
advertisements. It is noteworthy that four of the participants from Terrace who fit into the
“knew the educators” category, also, were referred to BCSS by the one of the two
psychiatrists residing and practicing in the northwest region. In Kitimat, 6 out of 12 (50%)
knew the family educators, 5 out of 12 (41.7%) were referred by mental health, and I out
of 12 (8.3%) knew about the course from community advertisements. In Smithers, 2 out of
3 (66.7%) knew the family educators, and 1 out of 3 (33.3%) heard about the course
through a friend. In Prince Rupert, 4 out of 4 (100%) were referred by mental health. As
of June 1999, there are six clients waiting for the program in Prince Rupert and one client
waiting for the program in Kitimat.

In northwestern BC, these 59 participants had 56 relatives with a mental illness or
undergoing the diagnosis of a mental illness and 3 had friends with a mental illness. Most

120

(32 out of 56, 57.1%) of the relatives with a mental illness or undergoing the diagnosis of a
mental illness were male. Of these relatives, the following data were collected about their
diagnosis:
Schizophrenia

46.4%

26 out of 56

Bipolar Disorder

30.4%

17 out of 56

Depression

16U%

9 out of 56

Unknown diagnosis

7T4%

4 out of 56

Schizoaffective Disorder

L8%

1 out of 56

These relatives with mental illness are analyzed according to the relationship to the
participant:
Males

Females

Son

31.7%

9/60

Daughter

&39&

5/60

Brother

13.3%

8/60

Sister

&39&

5/60

Husband

11.7%

7/60

Wife

10.0%

6/60

Father

L7%

1/60

Mother

6.7%

4/60

Friend

L7%

1/60

Friend

3.3%

2/60

Other relative

0%

0/60

Other relative 3.3%

2/60

In interpreting the data, it is noteworthy that the number of relatives with mental illness is
different than the numbers analyzed according to relationship because often one or more
family members with different familial relationships are represented in the data. For
example, in one family a sister and a father of an individual with a mental illness attended
the program, therefore, the relationships are represented as a son and a brother for one
person. In summary, the profile of the relative with a mental illness is male with either

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schizophrenia or bipolar disorder. Because no data about the ages of the relative a mental
illness, length of illness, number of hospital stays, and exact living arrangements was
collected, no comparisons can be made to the Journey of Hope Evaluation Report (Pickett
et al., 1997).

Non-Participants

In northwest BC, people from First Nations backgrounds rarely participated in the
program. People with a First Nations ancestry comprise about 20% of the total population
in this region. However, only one person of First Nation ancestry participated in the
program. When one compares the population data for and the participation of people from
First Nations background, it becomes apparent that this program did not satisfy their needs.
Evidently, the issue warrants further exploration. A needs assessment of family members
with First Nations ancestry should be performed to determine this portion of the
community’s educational needs. Additionally, the non-participation in the program by
individuals with First Nations’ ancestry shows a lack of acceptance for unexplored reasons.

Another group of non-participants were family members with less than high school
graduation level of education. According to Statistics Canada (1991 cited in Regional
Health and Management Plan for the Northwest Regional Health Board, 1996), 42.1% of
the population in northwest BC, had less than grade nine education, and family members
are represented in this group. Five clients, who fit into this category, refrained from taking

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the course for various reasons collected by the family educators and the BCSS coordinator.
Their reasons were:
•

takes too much time

® too long
«

I want you to come to my house for one-on-one visits

•

I can’t read

It is noteworthy that one program participant was functionally illiterate and still was
comfortable in participating in the program due to the reassurance and acceptance given by
the family educators and the other participants in the program.

The following data were collected by the BCSS coordinator and the family
educators about the non-participants. Two non-participants had conflicts with work
schedules. This group was encouraged to come when they could and make up missed
classes in subsequent sessions. Four non-participants and dropouts did not like the
program’s emphasis of dealing with family members’ feelings of grief. This group wanted
information and nothing else. One non-participant was philosophically opposed to
experiential or peer support activities. This individual communicated that professionals
were the experts and that peer support providers contributed inaccurate information. Also,
this person felt that other family members did not have the skills to deliver a program and
that other family members were “whiny”. One non-participant did not accept the
philosophy of self-care. A final group of non-participants self-reported to the BCSS
coordinator that they had personality conflicts with a particular trained family educator.
This conflict affected the delivery of the program in one northwest community.

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Another issue that merits further exploration is that it is possible that some family
members feel accepting that their family member has a mental illness. It is possible that
these family members are not traumatized, they have the information that they need to
cope, and their needs are being met in another manner. As found by Vinokur, Price, and
Caplan (1991), it is possible that non-participants self-select to defer from participating in
the program because they really do not need it

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Chapter 8

Analysis

This chapter discusses the analysis of elements of program implementation not
discussed in previous chapters.

Discussion of Implementation

Only phase 1 of the Familv-to-Familv education program has been implemented
and delivered in northwest BC. The delivery of this phase is based on recmitment of
family members of individuals with a mental illness. From the experience of this
researcher, recruitment is dependent on self-referral by individual family members. Phase
2 of the program, the support group phase, should be implemented in northwest BC,
however due to the barriers discussed in the previous chapter it cannot be implemented.

Additionally one should ask if there is no formal plan then can a program be
implemented? The Familv-to-Familv education program is delivered and thus is
implemented because a set of tasks was put into action that brought forth the program.
However, planning can improve effective implementation and delivery of programs. As
shown in figure 3.1, planning is integral in the implementation of programs by identifying
the target group, assessing the needs of the target group, by developing goals and
objectives, exploring constraints and resources, identifying and selecting methods and
activities, planning the implementation, and planning the evaluation. Because the program
was purchased from the NAMI, the tasks of target group selection, assessment of needs.

125

identifying methods and activities, implementation plan (in the United States), and a post­
test evaluation plan were already completed (Borland, 1998,1993, undated). However, the
purchase of a program does not preclude the need for exploring the constraints and
resources that affect the delivery of the program in BC. Because of differences in health
care delivery, geography, climate, and other factors, there was a need to develop an
implementation plan for BC. The absence of plan caused a reactive rather than a pro-active
approach when attempting to solve barriers to the implementation. Using a pro-active
approach includes exploration of the potential barriers of and facilitators to program
implementation. Furthermore, a pro-active approach can make use of brainstorming
strategies to determine potential barriers and to create possible solutions before the barriers
become a problem. Additionally, the process of writing the planning document enables the
planners and implementors to review and reflect upon the implementation of the program.

Augmentation of the Familv-to-Familv Education Program

Because the Familv-to-Familv education program was developed in the United
States, some of the data given in the program were not appropriate. When American data
about housing, prevalence rates, health management organizations, etc. were presented in
the program, the educators in northwest BC replaced the American information with
relevant Canadian data provided by BCSS. This deviates from the program developed by
Burland. Preston was given permission from Borland to supplement material if the
supplements were supplied on a different coloured paper (Preston, 1998). The regional

126

BCSS coordinator and a family educator from Terrace also provided supplemental
information such as BCSS Facts sheets as shown in table 8.1.

The BCSS coordinator also added the Individual Rehabilitation Service Plan and
the Rehabilitation Services Planning Tool from the Mental Health Division, Guidelines for
Rehabilitation Services (1996). Preston and deLange (Personal Communication, 1998)
included information about the Canadian Mental Health Association, BC division, the
Mood Disorders Association of BC and how laws are enacted in BC. One of the family
educators from Terrace added information about Changeways, a rehabilitation program for
people recovering from depression and other mood disorders (Paterson, 1997, Paterson,
McLean, Alden & Koch, 1996) and the McCorkell Court decision (BCSS Friends, 1993)^.
Additionally, the same family educator added a sample of a stigma fighting letter and a
sample of an advocacy letter directed towards a member of parliament. The BCSS
coordinator added examples of monitoring advocacy, which she performed on the
implementation of the provincial mental health plan in northwest BC.

^ The Community Legal Assistance Society (CLAS) put forward the case o f Mr. McCorkell who suffered
from bipolar disorder to test the constitutional validity o f involuntary committal and detention under the
provisions of the BC Mental Health Act. CLAS challenged the act on the basis o f the criteria being too vague
and the scheme for involimtary detention was not in accordance with fundamental justice. CLAS lost the
challenge on both accounts. The decision found that dangerousness and/or protection are valid criteria for
detention under the Mental Health Act. In addition, the decision found that the standards for committal strike
a reasonable balance between the rights o f an individual to be free from restraint by the state and society’s
obligation to help and protect the mentally ill. This decision named the McCorkell decision was seen by
members o f the BCSS to provide the legal support for the right for treatment and to be sane over the rights of
the individual to refuse treatment. In the 1998 Mental Health Act (Ministry o f Health, 1999) which was
declared as o f November 15,1999, the committal criteria were changed partially as a result o f the McCorkell
decision.

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Table 8.1 BCSS Fact S h eets added to the Familv-toFamilv Education Proqram
S chizophrenia

N euroleptic M alignant
S y n d ro m e

S ta g e s of H allucinations

S te p s for W orking with
D elusions

How to M anage C om m on
Sym ptom s

B enefits of E x ten d ed L eave

G etting S atisfactory
R esu lts....S o m e D o's an d
D on'ts

T h e M ental H ealth - T h e Right
to T rea tm e n t a n d C a re

Books available from B C S S

V ideos available from B C S S

Zyprexa F act S h e e t

H ospital D isch arg e P lanning
a n d C hecklist

14 Principles for Family
M em bers

R e le a se Form for a D octor to
sign th a t a relative with m ental
illness no lo n g er req u ires
tre a tm e n t u n d e r th e M ental
H ealth Act

Crisis Fact S h e e t

Family S u p p o rt P ro g ram in
N orthw est BC

128

Augmentation of the Familv-to-Familv program has been performed in other
regions of BC. In order to track augmentation and ensure that all program participants in
BC receive the same degree of program modification, an augmentation tool could be
developed as Contento et al did (1992). The augmentation tool does not necessarily need
to be quantitative (Contento et al, 1992); however, it should be qualitative showing the
materials used to augment the program.

Unplanned Effects from the Deliverv of the Program

There were some unplanned effects as a result of the delivery of the Familv-toFamilv education program. The northwest regional BCSS coordinator used the results of
brainstorming of issues from class eleven as a tool to inform Community Health Council
members, directors of the Northwest Community Health Services Society, and service
providers ahout issues with which family members of individuals with a
mental illness were concerned. Commonly, these issues involved improvement of services
directed towards the relative with a mental illness rather than the family member. The
regional coordinator used the issues generated by fifty-nine family members from nine
classes delivered in the northwest region as the results from de facto focus groups. There
were many common themes about improving housing, educational opportunities, and
suitable work opportunities for people with a mental illness, liaison with Royal Canadian

Class 11 is the advocacy class. In this class, participants learn about the types o f advocacy and how to
effectively advocate on their own behalf or on behalf of their family members with a mental illness.
Particpants brainstorm their problems, then turn the problems into systemic needs. After the need is
identified, participants propose implementation steps for each solution (Burland, 1998).

129

Mounted Police (RCMP), using continuing treatment orders, insufficient services for youth
when they first start to manifest symptoms, and appropriate rehabilitation assessments and
services for the person with a mental illness. The only services that families wanted were
respect and understanding from professionals, input into diagnosis and treatment planning,
respite, and increased community awareness about mental illness.

When the Familv-to-Familv education program was introduced to BC, the program
had a broader focus than that of BCSS. BCSS focused on its mission of “alleviating the
suffering caused by schizophrenia”(BCSS Constitution, 1994). Familv-to-Familv focused
on family education of family members of individuals with schizophrenia, bipolar disorder,
severe depression, obsessive-compulsive disorder, and/or anxiety disorder (Burland, 1998).
This discrepancy caused considerable philosophical disturbance within BCSS. It
influenced the BCSS board of directors to direct a board committee with staff support to
survey the branches to determine whether the grassroots of BCSS wanted to change the
focus of BCSS (Focus Survey Responses, 1998). Out of the 38 branches, 29 branches
responded to the survey (Focus Survey Responses, 1998). The results were that thirteen
branches wanted to expand the focus of BCSS, twelve branches wanted to maintain the
status quo, and four branches were undecided (Focus Survey Responses, 1998). As a result
of this survey and discussion, the board of directors passed a motion to expand the purpose
of BCSS by adding the words “or other serious mental illness” (Minutes of Board of
Directors Meeting, Jan. 16, 1999) to its mission.

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Gaining Acceptance

Gaining acceptance for Family-to-Family was challenging. Burland included
samples of letters and posters in the program (1998,1993). The BCSS coordinator
modified these examples for northwest BC. The initial adyertisement for introducing the
Family-to-Family education program in northwest BC was for “family members of people
with seyere mental illness to learn the skills to cope” (Adyertising poster designed by
Baxter, 1996). This adyertising campaign using humour has been used consistently
throughout northwest BC with positiye comments from participants. Another adyertising
strategy is the use of word of mouth about the program by the family educators. This has
been the most effectiye strategy for attracting participants because family educators, as
preyiously discussed in section 7, recruited most participants. Another strategy for
introducing the program to mental health workers was by compiling and writing clear and
concise information about the program as discussed in section 6.

Another strategy is to market the program as a tool to reduce the workload of
professionals. With no referrals from general practitioners, clergy, and community based
organizations in northwest BC, there is no apparent need to target these groups with letters.
In the past letters were sent to the aboye target groups with no result, thus, altematiye
approaches need to be deyeloped. Another approach to introduce the program is to deliyer
oral presentations to the local and regional meetings of physicians, clergy, and community
organizations.

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Most participants accepted the program. If the provincial dropout rate is examined,
only 109 out of 707 (15.4%) registrants failed to complete the program (Fast Facts,
Preston, 1998). In northwest BC, only 15 out of 74 (20%) registrants dropped out. The
low dropout rate demonstrates acceptance of the program by participants. The dropouts
rates for northwest were skewed because one group of family educators did not perform the
pre-course family visit which resulted in a high dropout rate of 50%. This caused the
dropout rate for the region to increase to 20% (15 out of 74) from 15.6% (10 out of 64).
This 15.6% dropout rate is equivalent to the provincial dropout rate of 15.4%.

The acceptance of the Familv-to-Familv education program by general practitioners
was minimal in northwest BC. The evidence for the previous statement is the lack of
referrals by general practitioners to the program^. Physicians should be surveyed to
determine the reasons behind the lack of referrals.

Most mental health service providers in northwest BC accepted the program as
shown through numerous referrals to the BCSS coordinator for the Familv-to-Familv
education program. In one northwest community, there were no referrals by either the
child/youth or adult mental health teams despite face-to-face meetings between these
professionals and the BCSS coordinator. From the lack of referrals, this researcher
concluded that the mental health professionals in this community exhibited a lack of

^In the fall of 1999, a family volunteer went to talk to all the nurses who work with general
practitioners in Terrace. Even though, the nurses were fascinated by the program, there
was no change in the referral patterns.
132

acceptance of the program. One of the two psychiatrists in the region accepts, refers to,
and endorses the program.

Acceptance by psychiatrists was evident in 1998 the Canadian Psychiatric
Association (CPA) when Elaine Preston was awarded the CPA Special Recognition Award
for Leadership and Dedicated Contribution to the Promotion of Mental Illness Awareness
(Friends, 1999, p.3).

As stated previously in section 6, staff from the Mental Health Division, Ministry
of Health supported the program after seeing the evaluation results from the pilot programs
in Maple Ridge and Langley. Thus, government accepted the program. As the program
spread throughout the province, BCSS members and participants influenced the BCSS
board to accept it as an official BCSS program. Once this occurred, it became apparent
that the provincial office of BCSS needed a staff member to coordinate the program
provincially. Additionally, BCSS needed to sign a contract with Joyce Burland regarding
the delivery of Familv-to-Familv education program in BC^.

Task Specification and Resource Estimation

Burland (1998,1993) designed specifications of tasks and estimation of resources.
All tasks are clearly set out. The physical and personnel resource needs were completely

®After a long period of negotiation, the contract was signed in 2000. In June 2000,
Burland trained 16 trainers to train the volunteer educators.

133

estimated. However, the monetary resources were not delineated. There were reasons for
this. When establishing a continent wide program, the funds required to deliver the
program in each locale vary widely. Thus, it has to be the responsibility of the local and
regional program deliverers to estimate costs according to the parameters within which the
program is delivered. However, the inclusion of sample budgets and funding requests by
the BC implementors was important for estimation of resource needs. Additionally, the
lack of regionalized funding for family education and initiatives consumed a lot of the time
and energy of the northwest regional BCSS coordinator.

Burland (1993, 1998) designed the development of the program activities as
outlined in section 4. The implementation activities for the program in BC were designed
by Preston and deLange as described in section 6. Because these activities in BC were not
initially formalized in a written form, it was difficult to determine what the specific plans
were.

Program Management Mechanism

Burland established a program management mechanism. She used contracts to
assist in ensuring fidelity to the philosophy and delivery of the programs similarly to
Rohland (1998) and Baker (1977). This researcher found the manual to be confusing about
the program’s philosophy and goals. Additionally, Burland used class sign-up sheets, class
composition reports after week 3, final class lists, final census forms, participant
evaluations, and educators' evaluations to the provincial or state program directors. Preston

134

(1998) stated that she had permission from Burland to augment the program if the
supplements were copied onto blue paper to distinguish them from the designed Familv-toFamilv program. However, no mechanism to track this augmentation was implemented.

135

Chapter 9

Recommendations

This section pulls together the implementation issues raised by the analysis
performed in the previous sections on implementation, participants and non-participants,
and analysis. A set of recommendations based on improving the implementation and
delivery of the Familv-to-Familv education program is proposed. These recommendations
are directed to the program developers, implementors, Board of Directors of BCSS, and the
staff and board members of the Northwest Community Flealth Services Society.

General Recommendations

Programming alternatives that are culturally sensitive to ethnic groups can be
developed. These alternatives that affect family members in BC should be developed here
in consultation with the appropriate cultural groups. For example, when developing
program alternatives that provide additional supports for families of First Nations ancestry,
they should be involved. According to Johnson and Johnson (1998), native Americans
value family involvement in treatment process as natural. Thus, when individuals from a
First Nations ancestry develops a mental illness, it is reasonable to expect that their family
members would become involved. Johnson and Johnson (1998) also concluded that family
members of First Nation’s ancestry required information about the mental illness with
which their ill relative was diagnosed. The question about the lack of participation by
individuals from a First Nations ancestry in the Familv-to-Familv education program could
be explored through a needs assessment specifically targeted towards this group of family

136

members. Because families from a First Nations ancestry participated at a low rate of 1/59
(1.7%) as compared to the estimated First Nations population of 20% (Northwest Regional
Health Board, 1996), alternative strategies for marketing and delivering programs could be
explored.

Another aspect that should be explored is the status of BCSS in the First Nations
community. Perhaps, the low participation rate in the Familv-to-Familv education program
is due to insufficient exposure of BCSS in First Nations communities.

Recommendations for the Familv-to-Familv Program Developers

To promote and facilitate further and clearer understanding of the Familv-to-Familv
program, the first recommendation is to include clear statements of the philosophy, goals,
and expected outcomes (or objectives) in the teaching manual. This researcher in her role
as the BCSS coordinator in northwest BC and the volunteer educators found the
application process for funds from the Consumer and Family Involvement Fund of
Northwest Community Health Services Society (NWCHSS) or other funding sources to be
impeded by the aforementioned barrier. This researcher found the information in other
publications. Afterwards, she used clear statements of goals and outcomes of the Familvto-Familv education program in all subsequent funding applications. Clear statements of
the philosophy, goals, and objectives could assist funding agencies in determining whether
the program meets their funding criteria. In addition, clear statements of the philosophy.

137

goals and objectives of the program could assist the educators in promoting the program to
professionals.

The second recommendation is the development of alternative strategies for
educators working in remote areas. The current strategies for training educators and
facilitators in groups of fifteen volunteers were incompatible with the characteristic of
remote and rural communities having a limited pool of people for leadership (Ministry of
Health, 1995). Thus, an alternative approach needs to be developed. Mentorship may
work in some cases, but not in others. Flexibility with distinct guidelines is important to
maintain quality service delivery. For example, one suggestion is that a family educator
trained to train more volunteer educators could visit remote communities and train a very
small pool of educators in a shortened version of the complete training program. Although,
there are drawbacks to this method; such as, the lack of forming a cohesive group of family
educators for mutual aid and support, there is still merit to this suggestion. It merits
consideration because of the nature of small, remote communities in northwestern BC.
With a small pool of volunteers, potential family educators could be left untrained because
they are unable to travel to larger regional centres training in larger groups.

The third recommendation is the establishment of more distinct and stronger
linkages between the education phase and the support group phase in the education phase.
For example, whenever the program discusses self-care, the linkages with peer support
groups could be further explained and clarified. Kurtz (1997) shows that support groups
have five helping mechanisms: giving support, imparting information, conveying a sense

138

Figure 9.1

Profile of A Voluntary Family Educator

1. Family member of someone with a serious or persistent brain disorder such as
schizophrenia, major depression, bipolar depression, anxiety and panic disorder, and
obsessive-compulsive disorder.
2. Do not need a teaching background.
3. Do need a good command of the language in which the program is given.
4. Comfortable with both oral and written word.
5.

Be willing to participate in the training program.

6.

Be willing to return to your community and deliver two 12-week sessions. All sessions
are done with two volunteer educators.

7.

Need to have time to organize and prepare classes.

8.

Be willing to learn new skills and then share this knowledge with other family
members.

139

of belonging, communicating experiential knowledge, and teaching coping methods.
These helping mechanisms could be communicated in class 10, the rehabilitation section of
the program. For example, a section in the program about the purpose and value of support
groups could be beneficial in motivating interest the support group component of the
Familv-to-Familv education program.

A fourth recommendation is to generate a profile of the ideal family educator with
respect to abilities such as fluency in the language in which the course is given, time to
dedicate to the program, and other characteristics as shown in figure 9.1. A family
educator from Terrace and the researcher generated this profile.

Initially, when this researcher recruited volunteers as family educators, she was not
sure about the role family educators played in the Familv-to-Familv education program.
Other than knowing that the educators had to have a relative with a mental illness, she was
uncertain who would be a suitable candidate to recruit as a family educator. If a tool
similar to the one depicted in figure 9.1 was included in the initial information package, it
could be used as a checklist to assist in determining the suitability of the volunteer to
become a family educator. Another program that used a volunteer screening tool was the
Parent Partners Program, a parent-to-parent support program in a neonatal intensive care
unit (Jarrett, 1996).

A fifth recommendation is to develop a quantitative fidelity checklist for
implementation of the program as seen in figure 9.2. This quantification of the fidelity of

140

the implementation of Familv-to-Familv is similar to the Fidelity Index developed by
Contente et al (1992). Because volunteer educators with minimal direction implemented
the Family-to-Family education program in various communities, this researcher found that
there was variation in the fidelity to the implementation plan as directed by Burland (1998,
1993). Fidelity to the plan could be tracked using program management mechanisms.
Thus, this researcher recommends the use of a fidelity index. This fidelity index could be a
simple checklist, however, this researcher prefers to quantify the fidelity index for the
purposes of enhancing the recognition of the need for the pre-course visit. This pre-course
visit is important in establishing acceptance of the program by its participants.
Additionally, this visit helps establish a level of comfort between the family educator and
the participant before the first class. Also, this researcher chose to include the project
management and evaluation forms as part of the fidelity index.

A sixth recommendation is to use an augmentation index that was developed to
determine the extent to which the program was improved. This index, shown in figure 9.3,
was developed similar to the Augmentation Index developed by Contento et al (1992).
Because the Familv-to-Familv education program was developed in the United States, a
family educator from Terrace and this researcher supplemented the program as discussed in
chapter 8. Most of the information added to the program was material about Canadian
and/or BC data and programs. From conversations with Preston and deLange (1998),
many other family educators augmented the program materials. This researcher feels that
the augmentation of the Familv-to-Familv education program should be systematic. The
use of the proposed augmentation index in figure 9.3 with the inclusion of a quantitative

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Figure 9.2

Implementation Fidelity Checklist for the Family-to-Family

Education Program
ITEM

POINTS

Advertising(score 1 point for ads distributed to each agency
to a maximum of 12):
1.1

Ads for
1.1.1

TV, Radio, and Newspaper

1.2

Ads for clinicians, doctors

1.3

Word of mouth (score 1 point per referral)

Pre-course visit or equivalent(score 12 points for visits for
all participants and deduct 1 point for each participant with
no contact before the classes commence)
Classes (score 1 point for each class given according to
manual to a maximum of 12)
Program Management (score 1 point per report)
4.1

Class sign-up list (class one)

4.2

Class list (class three)

4.3

Final Class List (class 12)

4.4

Final Census Forms (class 12)

4.5

Participant Evaluation (class 12,1 point per
completed evaluation)

4.6

Co-teacher evaluations (1 point per completed
teacher evaluation)

Total Points

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Figure 9.3

Augmentation Index for the Familv-to-Familv Education Program

Add 1 point for added information that makes a perceived improvement to the program.
Add 0.5 point for added information that makes a slight improvement to the program.
Deduct 1 point for added information that makes no improvement to the program.
Do not use this information the next time that the course is offered.
Add the name of the material added to the program in space provided. Use as many sheets
as necessary.
No.
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20

Material Added

Points

Total Points

143

reflection about the quality of the information supplemented could be useful. This strategy
of quantifying augmentation could assist in making educators reflect upon the necessity of
including the supplemental information as in Contento et al (1992).

Recommendations to the BC Implementors

The major recommendation is to use a written plan for the implementation of any
program. This plan should include the philosophy, goals and expected outcomes, target
group, needs assessment, budgets, the implementation timetable, and evaluation plan.
Also, any future proposals presented to the BCSS Board of Directors should meet the
criteria and the checklist developed in figure 9.4.

Recommendations to the Implementors from Northwest BC

The first recommendation is to assess the need for implementation of the support
group phase of the Familv-to-Familv education program in northwest BC. As stated
previously, information about the support group training is the key element for further
implementation in the northwest region.

The second recommendation is to negotiate with the staff of Adult Mental Health,
Northwest Community Health Services Society to transfer funding of the Familv-to-Familv
education program to the BCSS regional contract from the present Consumer and Family
Initiatives contract. This would enable the BCSS coordinator to efficiently fund the

144

program and decrease the burnout of family volunteers. Additionally, this transfer of
funding for the Family-to-Family education program would free up time spent generating
funding proposals for other contracted activities.

Recommendations to the Board of Directors of BCSS

The first recommendation for the Board of Directors was to name a provincial
Familv-to-Famil v education program coordinator. After the death of Elaine Preston, the
coordination of the program has not had the attention that it needs. Because the delivery of
Familv-to-Familv has become a major thrust of BCSS service delivery patterns, this
appointment was a priority that was met in late 1998 by the appointment of Dr. Nicole
Chovil. However, it took a further two years to finalize a contract between BCSS and
Joyce Burland. Prior to the appointment of Dr. Chovil, it was a challenge to obtain
statistical information about the Familv-to-Familv program.

A second recommendation is to use the checklist shown in figure 9.4. This
checklist was designed to enable the board of directors to make quality decisions about the
approval of future programs. The checklist should assist staff and others in making
proposals to the BCSS Board of Directors. The decision making process is facilitated by
collecting all available information. For example, in January 1994, when the Board of
Directors of BCSS decided to withhold support of the Familv-to-Familv education
program, it was primarily due the lack of information about the program. The Board
needed to know where the program fit into the mental health system, what the expected

145

Figure 9.4

I

Checklist for Approval of Programs

Does the proposal match the mission statement of BCSS? “Alleviate the suffering caused
by schizophrenia or other related disorders”

Yes

No

2

Does the proposal match the philosophy of BCSS?

Yes

No

3

Does the proposal outline the program objectives?

Yes

No

4

Do the objectives fit with the objectives of BCSS?

Yes

No

5

Is the target group identified?

Yes

No

6

Was there a needs assessment performed?

Yes

No

7

How was the need assessed?

8

Is there an implementation plan?

Yes

No
9

Does the plan include a time table?

Yes

No

10

Does the plan include implementation tasks?

Yes

No

11

Is there an evaluation plan?

Yes

No

12

Is the evaluation plan designed to offer the program again if it is successful?
Yes

13

No

Is the evaluation plan designed to alter the program to make it moreuseful to participants?
Yes
No

14

Is the evaluation plan designed to drop the program if it fails to meet the needs?
Yes

No

15

Is there a proposed budget?

Yes No

16

Is the budget sufficient to cover projected costs?

Yes No

17

What group, agency, government, etceteras will fund the program?__________________

18

What literature supports this program? (attach list)______________________________

19

Has there been a literature review on this topic?

Yes

No

20

Is there professional support for this proposal? (attach letters)

Yes

No

146

outcomes were, and whether the grassroots members of BCSS would accept the program.
At that time, in 1994, this information was unavailable to them. In June 1997, when the
Board voted to approve the Familv-to-Familv education program as an official BCSS
program, this information was available as discussed in chapter 6.

The third recommendation is to decide whether the Board of Directors of BCSS
wants to direct staff to secure funding for the development of culturally appropriate
programs directed at individuals of First Nation’s ancestry.

The fourth recommendation is to develop a Canadian program with the
Schizophrenia Society of Canada and all of its affiliates. Currently, there is a proposal by
BCSS to initiate this recommendation. This national program could integrate the Canadian
programs delivered in Guelph, UBC, and other centres.

Recommendations to the Northwest Communitv Health Services Societv

The first recommendation is establish standards for mental health program delivery
in northwest BC. The mental health staff from this society have recently set standards for
the Consumer and Family Involvement Fund and has established that family self-help
programs are to be financed through the fund in each community. This recommendation of
setting the standards became a basic practice due to the responsiveness of the acting mental
health directors to the needs of family members. However, it must be

147

stressed that the recommended method for funding the Familv-to-Familv education
program, as a core program for family members in northwest BC, is to incorporate the
program funding into the regional BCSS contract.

The second recommendation is to promote a service delivery system that promotes
a milieu of professional acceptance of appropriate family involvement in the lives of
individuals with a mental illness and the need for family self-help education. This milieu
should include community and hospital based mental health programs delivered in
northwest BC. The acceptance of family involvement in patient care strategies could be
incorporated into all job descriptions of service providers employed or contracted by
NWCHSS. Yingling and Trocino (1997) suggested this strategy as a method of ensuring
the value of patient and family education in delivering programs to non-insulin-dependent
patients with diabetes. Additionally, referrals of family members to the Familv-to-Familv
education program (where available) by mental health professionals could be written into
their job descriptions.

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Chapter 10

Conclusions

One major consequence that this researcher knows now that she did not know at the
beginning of this research process was the influence that the lack of a clear understanding
of the Familv-to-Familv education program philosophy, goals, and expected outcomes
played in the non-endorsement by the Board of Directors of BCSS in 1994. Imprecise and
nebulous statements about the program made it difficult to make incisive decisions about
accepting the Familv-to-Familv education program as an official BCSS program.
Furthermore, this lack of clarity contributed to the problems of implementing the program
in northwest BC.

The lack of a comprehensive plan for the implementation of the Familv-to-Familv
education program in BC limited the evaluation of the program. With no plan, it was
difficult to determine whether the program was implemented. In BC, there was no
implementation timetable, and no needs assessment to analyze.

Linking the evaluation of the implementation of the F amilv-to-Familv education
program to the Report of the Northern and Rural Task Force (1995), this researcher found
that the characteristics of rural communities affected its implementation. The isolation of
small communities affected the ability of the BCSS coordinator to implement the Familvto-Familv education program in communities outside her home community. It takes a long
period of time and a great deal of effort to develop relationships in communities outside
her own. Additionally, the geography and climate added to the isolation of the small

149

communities in northwest BC. Furthermore, the low numbers of community volunteers in
the pool seriously affected the ability of the BCSS coordinator to recruit volunteers as
family educators.

The effect of the innovation created by Elaine Preston and Margaret deLange on
BCSS was noteworthy. As a result of the implementation of Familv-to-Familv, BCSS had
to face the challenge of examining the expanding of its focus. Because Familv-to-Familv
was targeted to family members of individuals with schizophrenia, schizoaffective
disorder, bipolar disorder, severe depression, panic disorder, or obsessive-compulsive
disorder, its focus was broader than the schizophrenia focus of BCSS. A report was
generated and the board decided to widen its purpose to include “or other related disorders”
in January 1999. Furthermore, this innovation initiated further empowerment of family
members through its self-help activities in BC. The expansion of the purpose of BCSS and
the acceptance of the Familv-to-Familv education program by the members and Board of
Directors of BCSS demonstrates how individuals through perseverance and their
commitment to a cause can effectively initiate and make changes in organizations.
Additionally, BCSS was able to accept changes in program delivery strategies when the
grassroots of the organization wanted changes made.

Future Research

In order to link the Familv-to-Familv education program to psycho-education
programs delivered by the psychiatric profession, either a prospective or retrospective

150

intervention study on the relapse rates of the relative with a mental illness after the
participation of their family member in the Familv-to-Familv education program should be
performed. It is proposed that the relapse rates in the above cohort be compared to the
relapse rates of the relative with a mental illness where the family members have not
participated in any family education or psycho-educational programs. It is of additional
interest that Solomon (1995) looked at a prospective experimental effectiveness trial of
family intervention using family burden as measurement tool. Another measurement of
family education program effectiveness could be the systematic use of mental health
services by family members.

A systematic analysis of other methods of program delivery to rural populations
could be examined. One question that should be explored is - whether the use of
technology such as teleconferencing would be effective or is the face-to-face lecture style
absolutely necessary.

A study about non-participants and their reasons for not participating in the
program would be of interest. As discussed in chapter 7, one group not participating in the
program is family members of First Nations ancestry and their needs should be explored
further.

Another area of interest that should be studied is the lack of referrals by some
professionals and most physicians. The reasons should be determined and strategies to
overcome this barrier should be developed.

151

Conclusions

This thesis evaluated the process of the implementation of the National Alliance for
the Mentally Ill’s Family-to-Family education program in British Columbia by members
and staff of the BC Schizophrenia Society. The study used a case study approach
examining archival material, such as correspondence, minutes of meetings, contracts,
debriefing notes of the author, etc., and analyzing key informant interviews and the
program materials. From this analysis, the process of implementation was determined.
The researcher chose to study three facilitators that she discovered though her experiences
with implementing the program in northwest BC. They were community outreach strategy,
pre-course family visit strategy, and the program content. In addition, this researcher
discovered a number of barriers to implementation of the program in northwest BC. Five
barriers were chosen for study: systemic misunderstanding of the program, funding,
volunteer burnout, complexity of the language of the program, and geographical isolation
and distance to travel.

As a result of studying the implementation of the Familv-to-Familv education
program, six topics related to program implementation theory were discussed. This
researcher analyzed the data collected about the participants and non-participants to
determine whether the program reached the target population. Generally, the program
reached the target population with two exceptions: family members from a First Nations
background; and family members with less than high school education. Next, the absolute
requirement for program planning with a written plan was discussed. Because this

152

program was United States based, augmentation of the program was necessary to add
Canadian information. Because different educators added different information, it was
determined that it was necessary to track and standardize this augmentation. Next, this
author looked at the unplanned effects of the program. This author used the issues raised
in the Class 11 for presentations of family member generated issues to the health
authorities for the purpose of assisting in the improvement of the mental health system.
Additionally, the author discussed how the acceptance progressed both provincially and in
northwest BC. Most mental health professionals accepted the program. Physicians from
the northwest region and mental health professionals in one community demonstrated a
lack of acceptance by making no referrals to the program. Then this thesis examined the
mechanisms of program management. The mechanisms proposed by Burland were
reasonable. However, this author recommended two other program management tools: a
fidelity index; and an augmentation index.

In the final chapters of the thesis, this researcher made a general recommendation
about studying the needs of family members from a First Nations ancestry and how this
segment of society perceives BCSS. This researcher recommended that the program
developers include clear statements of the program philosophy, goals, and expected
outcomes in the first chapter of the teaching manual. In addition, more outreach strategies
for remote areas need to be developed. This researcher also recommended using the
volunteer educator profile, the fidelity index, and the augmentation index developed as
result of the evaluation research process. Furthermore, it was recommended that the
support group phase be linked to the education phase throughout in each class.

153

To the implementors of the program in BC and in northwest BC, this author
recommended that written plans be generated for program delivery. In northwest BC, the
author recommended that the need for be support group training be assessed. In addition,
recommendations were made to transfer the funding for the Familv-to-Familv education
program to the regional BCSS contract.

To the Board of Directors of BCSS, this author recommended to appoint a
provincial coordinator of the program and to use the checklist for the approval of programs.
This checklist was developed as a result of the analysis of the initial presentation to the
Board and subsequent lack of support for the proposal. In addition, a recommendation was
made to the BCSS Board of Directors to decide whether they want to pursue funding to
develop programs directed towards family members of First Nations ancestry. The final
recommendation was to develop a Canadian program in partnership with the Schizophrenia
Society of Canada and its provincial affiliates.

The final recommendations were directed to the Northwest Community Health
Services Society that delivers adult mental health services in northwest BC. The first
recommendation is to develop mental health program delivery standards. The second
recommendation is to promote a service delivery milieu that encourages professionals'
acceptance of the role that families have in the lives of individuals with a mental illness by
incorporating this acceptance in all job descriptions.

154

Finally, this thesis made some generic conclusions and suggestions for future
research. The author concluded that program delivery should be planned. In addition, the
barriers between small communities were difficult to overcome. Finally, this author
concluded that strong and committed individuals could overcome many barriers in the
formal and informal mental health care delivery system. For future research, this author
recommends that research should link family education to reducing relapse rates, further
study of the non-participants, and study of the referrals to the program by general
practitioners.

155

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