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A Family Quality of Life Approach for Social Workers:


Lessons from the Field of Intellectual and Developmental Disabilities

Ivan Brown1, Nicole Petrowski1, Meaghan Edwards2, Barry J. Isaacs3, Roy I.


Brown4, Nehama Baum2 and Shirli Werner5

University of Toronto, Canada


The Muki Baum Treatment Centres, Toronto, Canada
3
Surrey Place Centre, Toronto, Canada
4
University of Victoria, Canada
5
The Paul Baerwald School of Social Work and Social Welfare, Hebrew University, Mt.
Scopus
2

Correspondence:
Ivan Brown, PhD
Faculty of Social Work, University of Toronto
246 Bloor Street West
Toronto, Ontario M5A 1A1
Canada
ivan.brown@utoronto.ca

Words:
Characters:
Key words: Family quality of life, developmental disabilities, intellectual disabilities,
domains, concepts, assessment.

A Family Quality of Life Approach for Social Workers:


Lessons from the Field of Intellectual and Developmental Disabilities

Abstract
Family quality of life is an emerging area of study that is receiving strong
interest, both conceptually and empirically, in the field of intellectual and
developmental disabilities. Because this broad concept focuses on improving the
quality of families lives from a family-centered point of view, it should be of
considerable interest to social work theorists and practitioners. The main
caregivers of 64 people with disabilities completed the Family Quality of Life
Survey 2006, a comprehensive tool that features two outcome measures and four
explanatory measures of family quality of life in nine domains. The outcome
measures, Attainment and Satisfaction, were highest in the domains Family
Relationships and Influence of Values, and lowest in the domain Support from
Other People. Overall Attainment and overall Satisfaction are moderately
correlated to single item questions on life satisfaction and perception of quality of
life. Interconnections among some areas of family quality of life are explored and
illustrate that this is a complex, multi-dimensional framework. The discussion
stresses the utility of a family quality of life approach for social work practice.

Introduction
There has been a growing trend recently across the social and health sciences toward
considering the effects of interventions on the quality of life of those affected. The
underlying idea here is that a first consideration in providing and assessing any policy,
service, or specific intervention should be the degree to which it leads to improvement in
peoples lives, and works toward alleviating conditions that contribute to stress, pain, and
feelings of ill-being (Renwick, Brown, & Raphael, 1994). This focus on quality of life as
a first consideration has resulted in a great deal of work in the health and medical
sciences on health-related quality of life and in the social sciences on whole person
quality of life (see Brown & Brown, 2003 for a description of types of quality of life).
Health-related quality of life is suitable for assessing the effects of specific health and
medical interventions. The whole person approach to quality of life, as the name
suggests, concerns the full spectrum of an individuals life and is highly applicable to
supporting individuals and families within their living environments, a broad approach
that includes much of social work practice.
Interest in the whole person approach to family quality of life has surfaced from time
to time in the broader social sciences, but not specifically in the field of social work.
Research reports are sparse, but include: perceived quality of life of black families who
moved into predominantly white neighborhoods (Gettys, 1980); perceived quality of life
of families who adopted special needs children (Sar, 1994); effects of using day care
services for older persons on family quality of life (Gitlin, Reever, Dennis, Mathieu, &
Hauck, 2006); effects of vacations on the quality of life of caregivers (Mactavish,
MacKay, & Iwasaki, 2007); quality of life of single-parent families (Ihinger-Tallman,

1995; Nandi & Harris, 1999); effect on quality of life of changing gender roles for people
who live on farms (Meares, 1997); and quality of life of older family members (Evandrou
& Glaser, 2004; Kutner, Mistretta, & Barnhart, 1999; Lowenstein, 2007; Teno, Mor, &
Ward, 2005).
The field of intellectual and developmental disabilities has been one of the richest
sources of developing the whole person approach to quality of life (I. Brown, 1999; R. I.
Brown, 2006). A great many books, research articles, and measurement tools bear
testimony to this rapid development of ideas in the past 30 years (see Australian Centre
on Quality of Life, 2005 for a current list of available QOL instruments; see also Brown
& Brown, 2003 and Schalock & Verdugo, 2002). A variety of work emerged during this
time that covered QOL concepts, measures, and applications, and these were brought
together by international leaders in the field of intellectual and developmental disabilities
in a Quality of Life Consensus Document, a report to the World Health Organization
(Schalock, Brown et al., 2002). Since that time, there has been a focus on the more
precise meaning of quality of life for practitioners, and on how QOL concepts can be
applied to practice in ways that are more person-centered and lead to higher levels of
self-determination (e.g., Brown & Brown, 2003; Schalock, Gardner, & Bradley, 2007;
Turnbull & Turnbull, 2001; Wehmeyer, 2007).

Relevance of family quality of life


One dynamic and new focus within the field of intellectual and developmental
disabilities that should be highly applicable to social work practice is family quality of
life. Working with families has been a dominant part of social work and related fields in

the developed countries for at least the past century, but concerted effort on considering
how social policy and practice affects families perceptions of their own quality of life
has only emerged in the past eight years. There are two major sources of family quality of
life development within the field of intellectual and developmental disabilities (see also
Aznar & Castanon, 2005): researchers at the Beach Center on Disability at the University
of Kansas (Beach Center on Disability, 2008; Turnbull, Summers, Lee, & Kyzar, 2007),
and an international team of researchers from 19 countries confederated under the project
title International Family Quality of Life Project (see Brown, Anand, Fung, Isaacs, &
Baum, 2003; Brown, Anand, Isaacs, Baum, & Fung, 2003; Brown, MacAdam-Crisp,
Wang, & Iaroci, 2006; Jokinen, 2006; Jokinen & Brown, 2005; and Turnbull, Brown, &
Turnbull, 2004 for research reports; see Isaacs et al., 2007 for a report on the
development of the project). The work of the Beach Center is highlighted in a companion
article (see Wang, this issue), and one application of the work of the International Family
Quality of Life Project is presented here.
The overall purpose of the present study is to report the results of a family quality of
life project carried out in Toronto, Canada, as a way to demonstrate the utility of the
concepts and measures developed by the International Quality of Life Project for social
work researchers and practitioners. More specifically, this study explores the
relationships among two outcome measures and four explanatory measures of family
quality of life for six concepts across nine domains of family quality of life, as perceived
by the main family caregiver.

Method

Participants
Interviews were conducted with the primary caregivers of 64 families that had a
member with ID. Fifty-five (85.9%) of the participants were mothers, four (6.3%) were
fathers, and four (6.3%) reported another relationship (e.g., brother, sister, grandmother)
to the person with an ID. One interview was conducted with both the mother and father
present
Family structure. Forty-six (71.9%) of the 64 families were two-parent families, 17
(26.6%) were single parent families, and one (1.6%) reported an other family type. Six
participants reported having two family members with ID, and one participant reported
having three family members with ID. Thus, the participants from the 64 families
provided data on 72 persons with ID. Of the 50 families for whom data was available, 44
(88.0%) had their family members with ID living at home with them, and six (12.0%)
reported that their family members with ID were not living at home.
Description of family members with ID. Missing age data (n=2) of family members
with an ID resulted in a sample of 70 persons with an ID with available age data. The
mean age of those with ID was 21.67 years (SD=11.40). The age distribution was as
follows: one child (1.4%) under five years, 13 children (18.1%) 5-11 years, 17 youth
(23.6%) 12-17 years, and 39 adults (54.2%) over the age of 18. Of the 72 persons with
ID, 63.9% (N=46) were male. Each main caregiver reported one or more diagnosis for
their family member with ID, and thus it was unclear to what extent these were based on
professional assessment. The most common diagnoses given were ID - cause unknown
(N=40), Autism Spectrum Disorder (N= 44), and Dual Diagnosis (i.e., developmental

disability with concurrent mental health issues; N=31). Participants also reported, on a 5point Likert-type scale, the level of disability-related support needed by their family
member(s) with ID: 2 (2.8%) do not require disability-related support; 11 (15.3%) require
support for only a few aspects of life; 7 (9.7%) require support for some aspects of life;
27 (37.5%) require support for most but not all aspects of life, and 25 (34.7%) require
support for almost all aspects of life. Regarding level of communication, caregivers again
rated their family member(s) with ID on a 5-point scale: 17 (23.6%) communicate about
a wide variety of topics in a meaningful way; 17 communicate basic needs and wants; 15
(20.83%) communicate needs, wants, and some ideas in a meaningful way; 13 (18.06%)
reported communication within a limited range of topics, and 10 (13.89%) indicated their
family member had very little meaningful communication.
Procedure
Participants were recruited between 2006 and 2008 from two community agencies in
Toronto, Canada through convenience sampling methods. Posters were put up in the
lobbies and elevators to briefly describe the purpose of the study and to request volunteer
participants. In addition, researchers in both agencies developed lists of possible
participants (through clinician referrals and administrative databases on current service
clients); a letter was sent directly to people on these lists, followed by a telephone call, to
invite them to volunteer for the study. The one inclusion criterion was that participants
had to be the primary caregiver of a family member with an intellectual or developmental
disability (i.e., ongoing and regular contact with the family member with an ID).

One trained interviewer at each agency completed the FQoLS-2006 (see below) with
participants, either on-site or at another location (e.g., participants workplace, family
home, or one of the agencys satellite offices) at the request of the participant. Written
consent was obtained prior to interviewing participants, and one agency offered $50
compensation to participants for their involvement. Each interview lasted approximately
an hour and a half. Ethical approval for the study was obtained from the University of
Toronto Ethics Review Board.
Measure
The Family Quality of Life Survey (FQoLS-2000) was developed between 1997 and
2000 by an international team of researchers from Australia, Canada, and Israel. This
survey was then tested in research projects carried out in five countries (Australia,
Canada, Israel, South Korea, and Taiwan), and the results of these have been published in
the intellectual disability literature (Brown, Anand, Fung, Isaacs, & Baum, 2003; Brown,
MacAdam-Crisp, Wang, & Iaroci, 2006; Turnbull, Brown, & Turnbull, 2004). Some
limitations in the data collection properties of this survey led to its modification in 2006
(FQoLS-2006; Brown, Brown, et al., 2006). The development and modification of both
surveys is described in detail by Isaacs et al. (2007).
The FQoLS-2006 is a comprehensive instrument that collects both quantitative and
qualitative data about families who have a member with ID. The first section, About
Your Family, gathers descriptive information about the families. Each of the subsequent
nine sections addresses one of the nine family life domains featured in the FQoLS-2006:
health of the family, financial well-being, family relationships, support from other

people, support from disability-related services, influence of values, careers and


preparing for careers, leisure and recreation, and community interaction. Part A of each
of these nine sections gathers additional information specifically related to that domain.
Part B features ratings on 5-point Likert-type scales to provide data for two outcome
measures, Attainment and Satisfaction (e.g., To what degree do members of your family
enjoy good health? and All things considered, how satisfied are you with the
relationships within your family?); and four explanatory measures, Importance,
Opportunities, Initiative, and Stability (e.g., How important to your familys quality of
life is support from intellectual or developmental disability related services? Are there
opportunities for your family members to engage in leisure and recreation activities?
Do members of your family make efforts to develop their education and/or careers?
and In the near future, is it likely that your familys financial situation will ?). A final
short section captures participants global impressions of their familys quality of life and
satisfaction (Overall, how would you describe your familys quality of life? and
Overall, how satisfied are you with your familys quality of life?).
The FQoLS-2006 is designed to be completed by a researcher during a personal
interview with the main caregiver, or it may be self-administered. At the time of
publication, the FQoLS-2006 is being used internationally in eight English-language
projects, and in 10 projects in other languages. It has been translated into Bosnian,
Chinese, Dutch, Farsi, Flemish, German, Hebrew, Italian, Japanese, Slovene, and
Spanish.

Results
9

Main outcome measures. The means and standard deviations for the two outcome
measures, Attainment and Satisfaction, for each of the nine domains and overall (mean of
nine domains), are provided in Table 1. The mean global rating (single item question) of
the single item family quality of life was 3.19 (SD=1.02) and mean global satisfaction
was 3.39 (SD=1.12).

Table 1
Attainment and Satisfaction Means and Standard Deviations for Nine QOL Domains and Overall
Attainment
Domain

Mean

Satisfaction

SD

Mean

SD

Health of the Family

4.00

.93

3.31

1.07

Financial WellBeing

3.19

1.15

3.22

1.18

Family Relationships

4.31

.87

4.08

.86

Support from Other People

2.45

1.17

3.16

1.07

Support from Disability Related Services

3.37

1.35

3.22

1.26

Influence of Values

3.98

.98

3.97

.77

Careers / Preparing for Careers

3.52

1.28

3.39

1.23

Leisure and Recreation

3.68

.90

3.41

1.15

Community Involvement

3.21

.97

3.38

.89

Overall (9 domains)

3.52

.55

3.46

.65

Possible gender differences were explored by conducting independent samples ttests comparing Attainment and Satisfaction scores for male and female family members
reported with ID. No significant differences were found for gender. Four age groups were
10

constructed for family members with ID, 5-11 (N=13), 12-17 (N=16), 18-25 (N=14), and
26+ (N=20), and these were contrasted through separate one-way analyses of variance
(ANOVA) for Attainment and Satisfaction. A main effect was found for Attainment
(F(3,59)= 8.74, p< .01), and post-hoc comparisons revealed that participants with family
members aged 5-11 or adults (those aged 18-25 or over the age of 26) had significantly
higher mean Attainment scores than those with family members aged 12-17. A
significant main effect was also found for Satisfaction (F(3,59)= 9.08, p< .01), with
follow-up tests showing that participants with adult family members (aged 18-25 or over
the age of 26) reported higher levels of mean satisfaction than those with adolescents
(ages 12-17). Similar ANOVAs contrasted Attainment and Satisfaction scores for three
ability levels and three communication levels, but no significant differences were found
here.
To help demonstrate how Attainment and Satisfaction scores can be understood
more fully using variables in Part A of each domain, two examples are provided. First,
Attainment and Satisfaction were rated highest for the Family Relationships domain,
suggesting that family relationships might be a source of quality for families. Correlation
coefficients for Attainment and Satisfaction scores and some of the variables in Part A of
the Family Relationships domain are shown in Table 2. Caregivers who reported that
their family members frequently go places together, enjoy each others company, support
each other in times of trouble, help solve family problems, trust each other, work together
toward family goals, have a sense of belonging together, generally have similar values,
and do things as a family were also likely to perceive a higher sense of attainment and
satisfaction with their family relationships.

11

Table 2
Correlation Coefficients for Family Relationships Variables and Attainment and Satisfaction

Family Relationships Variables

Attainment in
Family Relationships

Satisfaction with
Family Relationships

Mean

Mean

Go places together

.39**

.37**

Enjoy each others company

.45**

.41**

Support each other in trouble

.38**

.34**

Help solve family problems

.35**

.31*

Trust each other

.37**

.34**

Work toward family goals

.40**

.42**

Have a sense of belonging together

.55**

.48**

Have generally similar values

.50**

.39**

* p < .05; ** p < .01

By way of a second example, the domain Support from Other People was rated
lowest for both Attainment and Satisfaction. Again, correlations coefficients for these
scores and scores from some of the variables in Part A are presented in Table 3. People
who received practical and emotional support from relatives, friends and neighbors were,
understandably, likely to have higher Attainment scores and, to a lesser degree, higher
Satisfaction scores. Caregivers who indicated their personal social life outside the family
was less than they would like also reported lower Satisfaction with support from other
people.

12

Table 3
Correlation Coefficients for Support from Other People Variables and Attainment and
Satisfaction

Support from Other People Variables

Attainment in
Support from Others

Satisfaction with
Support from Others

Mean

Mean

Relative help with practical things

.26*

.17**

Relatives give emotional support

.32*

.15

Friends / neighbors help with


practical things

.35**

.29**

Friends / neighbors give emotional


support

.49**

.19

Your personal social life is what you


want

.04

.46**

* p < .05; ** p < .01

Mean Attainment and Satisfaction scores were significantly (p<.01) correlated


within each domain (r values ranged from .45 in the Support from Other People domain
to .78 in Financial Well-Being). The correlations among overall Attainment (mean of 9
domains), overall Satisfaction (mean of 9 domains), the global rating of Family Quality
of Life, and the global rating of Satisfaction are shown in Table 4.

13

Table 4
Correlation Coefficients Among Main Overall and Global Measures
Overall
Satisfaction
Overall Attainment

Global Family
QOL

.79**

Overall Satisfaction

Global Family QOL

Global
Satisfaction

.53**

.65**

.68**

.76**

.76**

Global Satisfaction

** p < .01

Explanatory measures. The four explanatory measures, Importance,


Opportunities, Initiative, and Stability were designed to help interpret and understand
how to apply the two main outcome measures, Attainment and Satisfaction, and overall
quality of life. To begin to understand the relationships among these concepts, correlation
coefficients for overall scores (mean of nine domains) of Importance, Opportunities,
Initiative as well as their relationships with overall Attainment, overall Satisfaction,
Global FQOL and Global Satisfaction are shown in Table 5.

Table 5: Correlation Coefficients for Three Explanatory Measures and Four Outcome Measures
Opportunities

Importance
Opportunities
Initiative

.12

Initiative

Attainment

Satisfaction

.07

.34**

.75**

.77**

.64**

.63**

.53**

.27*

.25

.35**

* p < .05; ** p < .01

14

-.07

Global
Satisfaction

.43**

-.05

Global FQOL

-.07

Within the nine domains, Importance and Initiative were found to be significantly
correlated within all domains except Health of the Family and Financial Well-Being.
Opportunities was positively related to Initiative within all domains except Health of the
Family, Financial Well-Being, and Support from Disability Related Services. Both
Opportunities and Initiative were correlated significantly with Attainment in all nine
domains, and Opportunities was related to Satisfaction in all nine domains. Initiative was
significantly correlated with Satisfaction in six domains, but not for Financial WellBeing, Support from Other People, and Support from Disability Related Services.
The Stability measure is distinct from the other three explanatory measures, but is
useful in understanding each familys perceptions of how changing circumstance affect
their quality of life in the longer term. The stability measure is best understood and used
at the individual family level. For example, one main caregiver perceived that disability
related service would remain about the same over time, and was very dissatisfied with
that level, whereas another main caregiver made the same rating but was very satisfied
with the services she was receiving. In the first instance there appears to be a need to help
the family improve, whereas the second instance illustrates a source of strength and
quality. The same rating can be interpreted as either positive or negative, and thus its
application may vary considerably from one family to another.

Discussion
The purpose of this study was to introduce the concept of family quality of life to
a social work audience by reporting early descriptive analyses on data gathered using the
Family Quality of Life Survey (FQoLS-2006) in two Canadian community agencies. An
15

important focus of the study was to begin to explore the characteristics and relationships
among the six key concepts overall and within the nine domains of family life.
Overall Attainment and Satisfaction were positively correlated but differ
somewhat across the nine domains, suggesting that the two concepts are related but
measure unique perceptions of quality of life. The mean scores for Attainment varied
across the nine domains considerably more than the mean scores for Satisfaction. This
might be explained by the model of subjective well-being homeostasis (Cummins,
Gullone, & Lau, 2003), which asserts that people tend to report moderately positive
levels of well-being on self-report measures unless there is failure to cope with the living
environments they find themselves in. As a group, the main caregivers here may well
have coped with the challenges of disability without being overwhelmed.
One aspect of the study that was of particular interest to the investigators was
whether the overall trends reported by Brown, Anand et al. (2003) using the FQoLS-2000
were reflected in the present study results using the revised FQoLS-2006 (Brown et al.,
2006). The domains Family Relationships and Cultural and Spiritual Beliefs (revised to
Influence of Values in the FQoL-2006) emerged in the 2003 study as the highest scoring
domains, and again these domains were rated highly for both Attainment and Satisfaction
using the FQoL-2006 (see also Poston & Turnbull, 2004). Similarly, Support from Other
People, Support from Disability Related Services, and Community Involvement remained
areas of concern as they had in the 2003 report.
An interesting relationship emerged among overall scores for Attainment and
Satisfaction (mean of nine domains) and the single global ratings of FQOL and

16

Satisfaction. Both overall Attainment and Satisfaction were positively correlated with
global ratings of FQOL and global satisfaction with FQOL, but Attainment and
Satisfaction scores varied across the nine domains. If this finding is replicated by other
studies, it suggests that people do not always rate their life satisfaction the same way
when asked a single question as when they are asked the same question about several
aspects of their lives. It also suggests that people may perceive life satisfaction somewhat
differently than quality of life.
Another point of interest is that the age of family member with ID appears to be
related to caregivers perceptions of Attainment and Satisfaction. Caregivers with
adolescents who have ID rated both Attainment and Satisfaction across life domains
lower than those with either school-aged children or adults. A rather large body of
existing literature indicates that parents of children with developmental delays report
significantly greater negative impact and heightened levels of stress than parents of nondelayed children (Baker, Blacher, Kopp, & Kraemer, 1997; Baker, McIntyre, Blacher,
Crnic, Edlebrock & Low, 2003; McIntyre, Kraemer, Blacher, & Simmerman, 2004).
These lines of research have led to studies that explore how parental stress levels change
across time and at different developmental and transitional periods in delayed childrens
lives. The finding in the current study provides some support for the view that the onset
of adolescence and the transition to young adulthood can be a particularly stressful period
for caregivers (Blacher, 2001; Orr, Cameron, Dobson, & Day, 1993). Practitioners may
wish to consider how support for families can meet the challenges associated with this
age group.

17

The findings of this study help to clarify the utility of the four explanatory
concepts. Opportunities and Initiative appear to explain the main outcome measures in a
fairly straightforward way: if there are opportunities within a life domain and families
show initiative, then they are likely to feel a sense of Attainment, Satisfaction, and
overall Quality of Life. Importance and Stability were not significantly correlated with
overall Attainment, overall Satisfaction, global FQOL, or global Satisfaction, suggesting
that they might best be understood at an individual family level. For instance, a family
who reports high Importance along with high levels of Attainment and Satisfaction is
addressing an area of life that provides quality because it is valued by the person and is
both highly attained and very satisfactory. On the other hand, a family who reports high
Importance along with low levels of Attainment and Satisfaction is indicating an area of
life that is problematic because it is valued but is neither attained nor satisfactory. In a
similar line of thinking, a family that reports low Importance and high Attainment and
Satisfaction represents a case where things may best be left alone because the family does
not place any great value on that specific life domain. Stability appears to function in a
similar manner.
This study was limited in three main ways. First, the sample was not
representative of the ID population in Canada receiving services, as recruitment was
conducted through only two community agencies. However, these agencies are located in
a large and diverse urban area and demographics of the sample represent a wide range of
ethnic, socioeconomic, and family type groups. Requesting participation from families
not currently receiving services from either agency added to the scope of sample
characteristics. Second, the sample may not be fully representative of those receiving

18

services from the participating community agencies, as all participants volunteered to


take part in the study. Finally, the sample size itself is quite small. It does represent,
however, a basis for reporting preliminary descriptive data on the FQoLS-2006 and for
exploring the utility of the concepts and measures.
The early results reported here suggest numerous opportunities for future
research. Quality of life data needs to be collected on a considerably larger sample to
explore the psychometric properties of the FQoL-2006. The study needs to be replicated
using samples from various countries and cultures to determine social and cultural
influences on perceptions of quality of life. More exploration of the effect of age group
on perceived quality of life would contribute to the literature on family coping and child
development, as well as to the broader quality of life literature. This study used main
caregiver report, but future studies might explore ways to capture family quality of life as
perceived by all family members. Finally, future research needs to examine in a more
careful way how family quality of life ratings can be used in assessment and intervention
with a view to improving the quality of life of families. A considerable head start has
been made in this regard in the literature on individual quality of life within the field of
intellectual and developmental disabilities (e.g., Brown & Brown, 2003; Brown,
Schalock, & Brown, in press; Schalock et al., 2007).
Family quality of life is an emerging area of study within the field of intellectual
and developmental disabilities that promises to be of particular interest to the field of
social work. The family quality of life approach represented here is family-centered in
that it relies on the perceptions of family members themselves. It provides a method for
understanding what aspects of life contribute quality to the family, and what aspects of
19

life detract from quality and could be improved. This individual family focus that
emphasizes supporting and enhancing quality is an approach that is needed in some areas
of social work practice.

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