Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2011.01434.

x
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volume 55 part 12 pp 1115–1122 december 2011

Family quality of life: adult school children with

intellectual disabilities in Bosnia and Herzegovina jir_1434 1115..1122

E. Svraka,1 S. Loga2 & I. Brown3

1 Faculty of Health Studies, University of Sarajevo, Sarajevo, Bosnia and Herzegovina
2 Academy of Sciences and Arts of Bosnia and Herzegovina, Sarajevo, Bosnia and Herzegovina
3 Faculty of Social Work, University of Toronto, Toronto, Ontario, Canada

Abstract Stability (the degree to which things were seen as

likely to improve or decline) varied slightly across
Aims This study endeavours to provide initial data
domains but the means indicated that things are
on quality of life for families with adult children
expected to stay almost the same or improve
who have intellectual disabilities (ID) in the Canton
slightly.
of Sarajevo.
Conclusions This research provides initial data for
Methods The principal measure used was the
family quality of life in Bosnia and Herzegovina. It
Family Quality of life Survey 2006 – main caregivers
also provides suggestions for improving quality of
of people with intellectual or developmental disabilities.
life for families that have one or more members
The sample consisted of the main caregivers of 35
with ID. The results should also contribute to
families with adult school children with ID who
rejecting stereotypes and promoting inclusion of
attended classes in a specially adapted programme
children with ID as well as the rights of their
in the Center of Vladimir Nazor and in the Voca-
families.
tional Secondary School in Sarajevo. Of the 35 par-
ticipants, 21 were male and 14 female. Students Keywords families, intellectual disability,
with disabilities ranged from 19 to 32 years old international, quality of life
(mean 21.45).
Results Consistent with previous research, the nine
domains measured by the scale were all rated high Introduction
for Importance. Opportunities were considered to
be particularly low for Financial Well-Being and In Bosnia and Herzegovina (B&H), children with
Support from Others. These domains were also disabilities are generally isolated and live in the ano-
rated lowest for Attainment and Satisfaction. Initia- nymity of their family homes, especially in the rural
tive was relatively high across all domains, and areas. There are a number of complex and overlap-
ping reasons for this, including: poverty-stricken
families, regression in infrastructure and social ser-
Correspondence: Dr Ivan Brown, Faculty of Social Work, Univer-
sity of Toronto, 1000 College Street, 246 Bloor Street West,
vices as a result of war in B&H (1992–1995), and
Toronto, Ontario, Canada M5S 1A1 (e-mail: ivan.brown@ an education system that anticipates ‘special
utoronto.ca). schools’ for children with intellectual disabilities

© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd
 Journal of Intellectual Disability Research
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E. Svraka et al. • Family quality of life in Bosnia and Herzegovina
(ID). Children with disabilities often live in families
that lack sufficient financial resources to allow for
transportation to special schools or rehabilitation
settings to access services (EducAid 2005).
Intellectual disability is typically conceptualised in
B&H as the state of arrested or incomplete mental
development, indicated by impairment of abilities
during the development years, such as speech, cog-
nitive, motor and social impairments. Disability can
occur along with, or separate from, other mental or
physical disorders (Borišev 2000). Priority problems
of families that have children with ID in B&H have
been described as (Švraka 2007):
• lack of a register for developmental and intellec-
tual disabilities;
• lack of continuous preventive measures;
• lack of ongoing education for professionals who
work with families that have children with intellec-
tual and development disabilities;
• lack of ongoing training of teachers regarding
inclusion of children with special needs in regular
classroom activities;
• inadequate community support for all ages of
children and adolescents with ID;
• lack of adequate programmes and legislation for
employment and work support; and
• high cost of habilitation–education programmes
for children and adolescents with ID, and insuffi-
cient funding for them.
Young people with moderate and severe ID who
are older than 21 years are not included in any
formal way in education and rehabilitation pro-
grammes, except in scattered and modest activities
sponsored by parents’ associations.
Within this context, it was considered that family
quality of life might provide some preliminary infor-
mation that might shed some light on how B&H
might move forward in developing legislation and
services to support people with disabilities and their
families in better ways. This consideration emerged
after reading – and discussing how to apply – the
initial results from the family quality of life research
that has been emerging from several countries
around the world since 2000 (e.g. Brown et al.
2003; Turnbull et al. 2004; Isaacs et al. 2007;
Werner et al. 2009; Brown 2010), and that is further
explored in the current issue. These studies have
pointed to a number of characteristics of family life
(e.g. family relationships, parenting, values and
© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd
volume 55 part 12 december 2011
beliefs) that appear to be important for families’
overall well-being and are presumed to improve
family life and family living skills, and some areas
that are problematic to families across the world
(e.g. support from services, support from other
people and in some cases family finances). They
also suggest that family quality of life is an impor-
tant indicator of the degree of success of services
and supports to individuals with ID and their fami-
lies. Thus, in keeping with the present needs of
B&H, it was considered that family quality of life
data might provide some evidence that could be
useful as one parameter for evaluating the quality of
rehabilitation services and professionals’ relations to
clients. In order to move in this direction, it was
determined that some initial empirical work in
family quality of life needed to be undertaken. The
aim of the present study, then, was to provide an
initial set of measures of quality of life for families
with adult school children with ID in the Canton of
Sarajevo in B&H.
Method
Participants
The sample consisted of the main caregivers in 35
families that have adult children 18 years and over
with ID who attended classes in a specially adapted
programme in a centre for children with ID, autism
and cerebral palsy (n = 16), and in the Vocational
Secondary School in Sarajevo, B&H (n = 19).
The Canton of Sarajevo is one of 10 cantons in
the Federation of Bosnia and Herzegovina. This
Canton encompasses a geographic area that
includes rural, small town and urban living. Sara-
jevo is its largest urban area, and is made up of four
adjoining municipalities. In this sample, 27 families
lived in a large urban area, six lived in small towns
and for two families there was no data available.
The 35 participants, mostly mothers, reported
their levels of education as: four grades of elemen-
tary school (n = 3), completed elementary school
(n = 4), completed secondary school (n = 14), com-
pleted post-secondary school (n = 3) and no answer
(n = 11). Seven of the families had one parent, 23
had both parents and five had ‘other’ main caregiv-
ers such as guardians.
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E. Svraka et al. • Family quality of life in Bosnia and Herzegovina
Intellectual disability level, as indicated by intelli-
gence testing, was determined, since this method of
categorising people with disability is often used in
B&H policy and practice, as it is in many other
countries. Of the 35 adult children with ID, intelli-
gence testing indicated that 19 had mild intellectual
disability (MID), 14 had moderate intellectual dis-
ability (MOID) and two had severe intellectual
disability (SID). Twenty-one (15 with MID and
six with MOID) were male and 14 (four with
MID, eight with MOID and two with SID) were
female. Sons and daughters with disabilities were
from 19 to 32 years old, with a mean age of
21.46 years.
Regarding diagnosis as reported by the main car-
egivers, 15 sons or daughters had ID of unknown
aetiology, eight had cerebral palsy, four had Down
syndrome, four had epilepsy and another three had
epilepsy as a co-morbidity, two had autism and two
had Prader–Willi syndrome. One had a dual diag-
nosis (ID and mental illness).
Procedures
The principal measure used for family quality of life
in the study was the Family Quality of Life Survey
2006 – main caregivers of people with intellectual or
developmental disabilities (FQOLS-2006; Brown et al.
2006). The first author translated the FQOLS-2006
from the original English into Bosnian, with the
permission of the authors and in accordance with
the procedures set out by them. The translation was
carefully reviewed by professionals who spoke both
Bosnian and English and who worked in ID in
B&H, minor amendments were made to fit with the
original English meaning and with local terminol-
ogy, and it was formatted for use with the study
reported here.
The study began with gaining the support of the
directors, social workers and teachers of two
schools. Teachers were informed of the project by
the directors on their Council of Teachers and, in
turn, the teachers contacted the parents of the stu-
dents in their classes to participate voluntarily in
the project. With the assistance of the researcher,
parents/guardians were first informed about the
purpose of the research and the intended use of the
research data, including publication of results. In
doing so, they were assured of confidentiality and
© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd
volume 55 part 12 december 2011
anonymity. Parents confirmed their agreement by
signed consent.
The data were collected in small parent groups
in their children’s classrooms by completing the
FQOLS-2006. Parents could ask for assistance from
the researcher who was present all the times with
them. For some parent groups, the researcher was
assisted by social workers. Information on intelli-
gence levels was available to the researchers in their
professional capacities. Completing the survey took
from 1 to 2 h. Four mothers were illiterate and, for
these four, the researcher read the survey items and
recorded their responses for them.
Data were collected over an 18-month period,
and entered into the spss data file made available
by the FQOLS-2006 authors. All data analyses were
completed using spss. The Survey hard copies and
the data files were kept in the researcher’s locked
office.
Results and discussion
Level of support, communication level and
intellectual disability type
As mentioned above, ID type in this study was
determined by intelligence testing, a common
practice in B&H. A question that has been asked
in the ID literature for a number of years is
whether this is the best way of categorising people
with ID or if there are other ways. The FQOLS-
2006 does not include any method of recording ID
as determined by intelligence testing, but it does
include two 5-point rating scales for main caregiv-
ers to report the level of support required, and the
communication level of the person with ID. These
rating scales provide additional descriptive infor-
mation on the family members who have ID, but
they also act as a rough guide for assessing the
validity of assigning level of ID as determined by
intelligence testing. The ratings are shown in
Table 1 (n = 32 for level of support and n = 28 for
communication level due to missing data). It
appears, concerning this sample, that levels of
support and communication as reported by main
caregivers do not corroborate intellectual level as
measured by intelligent tests well, especially for
adults with mild ID. This suggests that, although
intelligence test results might be useful for cat-
egorising people with ID for some purposes, other
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E. Svraka et al. • Family quality of life in Bosnia and Herzegovina

Table 1 Level of support, communication level and level of intellectual disability

Level of intellectual disability

Levels of support and communication MID MOID SID Total

Fifth levels
Does not require disability-related support 8 2 0 10
Able to communicate about a wide variety of topics 1 6 0 7
in a meaningful way
Fourth levels
Requires disability-related support for some aspects 0 6 0 6
of life
Able to communicate about some topics in a 0 0 0 0
meaningful way
Third levels
Requires disability-related support for some aspects 1 3 1 5
of life
Able to communicate within a limited range of 4 3 1 8
topics in a meaningful way
Second levels
Requires disability-related support for most, but not 5 2 1 8
all, aspects of life
Able to communicate needs, wants and some ideas 3 3 1 7
in a meaningful way
First levels
Requires disability-related support for almost all 3 0 0 3
aspects of life
Very little meaningful communication 5 1 0 6

MID, mild intellectual disability; MOID, moderate intellectual disability; SID, severe intellectual disability.

categorisation criteria such as level of support and
communication level might also be considered.
Ratings of overall family quality of life
When asked to rated their overall family quality of
life, three said ‘excellent’, eight said ‘very good’, 16
said ‘good’, seven said ‘fair’ and one said ‘poor’.
Furthermore, when asked to rate their overall satis-
faction with their family quality of life, two said
‘very satisfied’, 19 said ‘satisfied’ and 13 said
‘neither satisfied nor dissatisfied’. None reported
being dissatisfied or very dissatisfied.
Measures for the nine domains of family
quality of life
The mean scores and standard deviations of the six
measurement dimensions (Importance,
Opportunities, Initiative, Attainment, Stability and
Satisfaction) for the nine domains of the FQOLS-
2006 are shown in Table 2.
Consistent with previously reported research in
other countries using the FQOLS-2006 (e.g. Brown
et al. 2003; Turnbull et al. 2004; Werner et al.
2009), Importance was rated quite high for all
domains. This reflects the view that the nine
domains are considered by main caregivers to be
essential aspects of family life. However, the mean
Importance score for Support from Others was sur-
prisingly low and the mean score for Influence of
Values was lower than previously reported (e.g.
Brown 2010).
Attainment and Satisfaction are considered in the
FQOLS-2006 to be the two principal outcome mea-
sures (Isaacs et al. 2007). Like previously published
literature (see especially Brown 2010 for ratings of
eight countries), Family Relationships was rated

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E. Svraka et al. • Family quality of life in Bosnia and Herzegovina

Table 2 Mean scores and standard deviations for Importance, Opportunities, Initiative, Attainment, Stability and Satisfaction for nine
domains of family quality of life

Importance Opportunities Initiative Attainment Stability Satisfaction

Domains Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD

Health 4.8 0.72 4.09 1.10 4.17 0.95 4.14 1.12 3.46 0.98 3.66 1.14
Financial Well-Being 4.6 0.88 2.77 1.29 3.77 1.24 3.11 1.39 3.11 0.99 2.85 1.18
Family Relationships 4.6 0.98 4.37 1.03 4.29 1.18 4.36 1.08 3.5 0.75 4.31 0.87
Support from Others 3.63 1.44 3.0 0.39 3.6 0.95 2.89 1.39 3.29 0.83 3.11 1.08
Support from Services 4.51 0.85 4.26 1.04 4.2 0.90 3.86 1.06 3.34 0.80 3.55 1.03
Influence of Values 3.91 1.06 3.71 1.09 3.91 0.79 3.91 0.83 3.43 0.70 3.68 0.84
Careers 4.34 1.03 4.29 0.99 4.31 0.72 4.06 0.77 3.57 0.88 4.0 0.84
Leisure and Recreation 4.51 0.66 4.0 0.87 3.97 0.75 3.74 0.89 3.26 0.62 3.83 0.75
Community Interaction 4.0 1.10 4.18 0.87 4.15 0.74 3.91 0.97 3.35 0.69 4.0 0.64

highest of the nine domains by both these measure-
ment dimensions. Health, Careers and Community
Interaction were also rated quite high. On the other
hand, Financial Well-Being and Support from
Others were rated lowest for Attainment and Satis-
faction.
Opportunities and Initiative, explanatory mea-
sures (see Isaacs et al. 2007), do help to explain the
variation in the Attainment and Satisfaction scores.
Table 2 shows that, in general, initiative is taken
where opportunities are seen to be available, and
Attainment and Satisfaction scores roughly corre-
spond to Opportunities and Initiative scores. For
Financial Well-Being and Support from Others, the
mean scores for Initiative are notably higher than
for Opportunities, perhaps indicating that consider-
able effort is required in these areas in view of
lower opportunities available. In spite of these
efforts, Attainment is rated quite low for these two
domains, and this appears to help explain their low
Satisfaction scores. The other finding of note is that
Attainment and Satisfaction scores for Support
from Services were considerably lower than Oppor-
tunities and Initiative scores. This suggests that,
while services appear to be available, they may not
be the ones that families consider they want or
need.
Stability is a measure of the degree to which
families perceive that the domain of life measured
will get better or get worse in the future. Stability
may best be interpreted on a case-by-case basis,
because a rating of 3 (things are not expected to get
better or worse) may mean for some families that
things are already good and do not need to get
better, but for other families that things are not
good but there is little hope for improvement. Simi-
larly, a low rating for Stability (things are expected
to get worse) might mean that supports are
expected to deteriorate or that supports will remain
good but factors such as aging or increased disabil-
ity might make the situation worse (also see Isaacs
et al. 2007 for a discussion of Stability). The mean
scores across the nine domains ranged from 3.11 to
3.57, suggesting that, on average, the view of change
was relatively consistent across all life domains.
However, as noted, this relative consistency may
have resulted from similar ratings for different
reasons, so caution needs to be exercised when
aggregating Stability data.
Additional explanatory factors within the
nine domains
The FQOLS-2006 collects information on numer-
ous service and demographic variables. Some of
these are helpful to explore because they offer addi-
tional explanation for the main outcome measures.
Health of families
One aspect of family quality of life that has not
been explored in depth to date is the degree to

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E. Svraka et al. • Family quality of life in Bosnia and Herzegovina
which family members with ID have physical or
mental health problems. When asked this question,
the main caregivers responded with ‘yes’ for 14
(73.7%) of those with MID, for 12 (85.7%) of those
with MOID and for two (100%) of those with SID.
This suggests that adults who have more severe dis-
abilities are judged by their caregivers to have more
health problems as well.
Financial well-being
When asked to rate their family income in catego-
ries, eight (22.9%) families rated ‘well above
average’, 13 (37.1%) families rated ‘above average’
and 14 (40.0%) families rated ‘average’. No families
rated themselves below average. This suggests a
degree of financial satisfaction that was not
reflected in the Attainment and Satisfaction scores
reported in Table 1. An explanation might lie in
responses to the question ‘After all the necessary
expenses are paid at the end of each month, does
your household have money left to do with as you
wish?’ Here, only seven (20.0%) main caregivers
answered ‘yes’ while 28 (80.0%) answered ‘no’.
Support from disability-related services
On the surface, the families in this study appeared
to be receiving the kinds of disability-related ser-
vices they wanted: of the 35 main caregivers, 26
(74.3%) answered that there were no disability-
related services that they needed and did not get,
and only seven (20.0%) suggested other services
that they would like to receive. Yet, both Attainment
and Satisfaction were rated relatively low for
disability-related services. Perhaps the explanation
lies in the rating for Stability (with a mean rating of
3.34), which suggests that the families on the whole
did not foresee that things would change for the
better in the future.
Influence of values
The influence of personal, spiritual, religious and
cultural values appears to be very important to how
family quality of life is perceived in some countries
(Turnbull et al. 2004; Brown 2010). For this
sample, Attainment and Satisfaction in the domain
were relatively low. When asked what types of values
were held by the family, main caregiver in 29
© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd
volume 55 part 12 december 2011
(82.9%) families reported personal values, those in
17 (48.6%) families reported spiritual values, those
in 20 (57.1%) families reported religious values
and those in 20 (57.1%) families reported cultural
values. When asked to what degree these values
helped family members accept and cope with dis-
ability, six (17.1%) caregivers said ‘very much’, 15
(42.9%) said ‘quite a bit’, eight (22.9%) said ‘some-
what’ and one (2.9%) said ‘a little’. Five (14.3%)
others checked the box ‘do not have strong per-
sonal, spiritual, religious or cultural values’. Thus,
the lower mean Attainment and Satisfaction scores
may have been influenced by a number of families
that reported not having strong values, or not
finding those values to be helpful in accepting or
coping with disability.
Careers
When asked how about the importance of pursuing
careers that family members want, the main car-
egivers of 19 (54.3%) families reported ‘very impor-
tant’ and an additional 13 (37.1%) reported ‘quite
important’. Only three (8.6%) others responded to
the lesser important categories. It was somewhat
surprising, then, to find that, when asked if any
family member had given up a career or education
to care for the family member with a disability, 14
(40.0%; 13 mothers and one father) replied that
they had. This was all the more surprising in view
of the relatively high Attainment and Satisfaction
scores rated by the main caregivers who were
mostly women. It can be assumed, perhaps, that
those who gave up education or careers to care for
a family member with a disability may have done so
willingly and without a strong degree of regret, or
that those who had given up their careers based
their ratings on their spouses’ careers.
Leisure and recreation
Most families (26 of 35; 74.3%) reported that they
frequently or almost always included the family
member with ID in leisure and recreation activities.
Moreover, 27 (77.1%) main caregivers reported
taking quite of bit or a great deal of initiative in
ensuring that this was the case. Such efforts are
consistent with relatively high scores in Attainment
and Satisfaction for this domain. The Stability
ratings might also help to explain the Satisfaction
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E. Svraka et al. • Family quality of life in Bosnia and Herzegovina
ratings: 28 (80.0%) of the main caregivers saw
family leisure and recreation staying about the
same, while the remaining six who replied (17.1%)
all saw it as improving or greatly improving in the
future.
Community interaction
Of the 35 families, 27 (77.1%) lived in a large urban
centre, and only six (17.1%) lived in smaller towns
or rural areas (for two families there was no
response). The relatively high ratings of Attainment
and Satisfaction for Community Interaction prob-
ably have a great deal to do with the degree to
which the family likes the community in which they
live. When asked this, 28 (80.0%) of the main car-
egivers reported that their families like living in
their present communities, four (11.4%) answered
‘somewhat’ and only one (2.9%) answered ‘no’.
Another factor that might affect the degree of
community interaction is whether or not family
members feel they face discrimination because of
disability. Of the 35 main caregivers in this study,
only four (11.4%) reported feeling discriminated
against, while 27 (77.1%) claimed they did not feel
discriminated against [four (11.4%) did not
respond].
Conclusion
This study provided, for the first time, an initial set
of quality of life measures for families with adult
school children with ID in the Canton of Sarajevo.
Such information may be useful for evaluating the
present and future need for rehabilitation services
of families and individuals with ID in B&H. In par-
ticular, it would be interesting to know the effects
(skill development, ease of burden, life satisfaction,
etc.) on individuals and their families of new reha-
bilitation programmes for young adults who no
longer attend school.
The results reported here for B&H are quite
similar to those found in other countries using the
same measurement instrument (Brown et al. 2003;
Werner et al. 2009; Brown 2010). Like families in
other countries, Importance was rated high for all
domains but Support from Other People had the
lowest Importance ratings of the nine family life
domains. The two main outcome measures, Attain-
© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd
volume 55 part 12 december 2011
ment and Satisfaction, are, like those in other coun-
tries, areas of strength, particularly Health, Family
Relationships and Careers, and like some other
countries Leisure and Influence of Values. These
findings suggest that families in B&H are more
similar to families in other countries than they are
different in their ratings of family quality of life.
Further research is needed to verify and extend
the findings of the present study and to address
its limitations. The quality of life of families with
younger children with disabilities and families with
aging parents should be studied. There was some
suggestion in this study that family quality of life is
more challenging for families that have a member
with more severe disabilities, but this needs to be
further examined. The method of administration
(interview or self-administration) may influence the
ratings, and this was not explored in the present
study. Although the FQOLS-2006 is an extensive
survey, it does not collect comprehensive informa-
tion about individuals or families, and thus it might
best be used in combination with other instru-
ments, especially if the data are being used as a
source of information upon which life decisions are
based. Finally, it is recognised that there was no
comparison group in the present initial study of
family quality of life and that it would be interesting
to contrast ratings of main caregivers of children
with and without ID.
A number of issues arise from this study because
they are ‘missing’ from the description of the study
participants and their environments. Four of the
seemingly most important are: lack of organised
community services for adults after they leave
school; lack of a cantonal, state or federal registra-
tion programme that would improve coordination of
health and social services and link to the European
Register; necessity of conducting continuous educa-
tion for the teaching staff at schools regarding
effective curricula, for parents, and for health pro-
fessionals; and the possibility of developing occupa-
tional and physical therapy programmes for
children, adolescent and adults. The degree to
which improvements such as these might affect
family quality of life also needs to be examined in
future study.
The goals of education and rehabilitation in
B&H, similar to most other countries of the world,
are to work towards community inclusion, accep-
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E. Svraka et al. • Family quality of life in Bosnia and Herzegovina
tance of diversity, optimal physical and mental
health, and personal and social well-being. The
focus on family quality of life is a step towards
understanding how we can move closer to achieving
these goals.
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