Family quality of life of Australian families with a member with an intellectual/developmental disability

Family quality of life of Australian families with amember with an intellectual/developmental disabilityjir_1462 71..86

F. Rillotta,1 N. Kirby,1 J. Shearer2 & T. Nettelbeck1

1 School of Psychology,The University of Adelaide, Adelaide, South Australia, Australia2 South Australian Public Service, Adelaide, South Australia, Australia

Abstract

Background Family quality of life (FQOL) is arecent concept in intellectual/developmental disabil-ity research. Outcomes for the family are importantto the provision of services because families, ratherthan institutions, are increasingly considered theprimary support unit. This article presents Austra-lian findings using the international Family Qualityof Life Survey: Main Caregivers of People with Intellec-tual or Developmental Disabilities (FQOLS-2006).Method Forty-two South Australian main caregiv-ers of people with an intellectual/developmentaldisability were interviewed using the FQOLS-2006.The FQOL domains assessed were Health of theFamily, FinancialWell-being, Family Relationships,Support from Other People, Support from Disability-Related Services, Influence ofValues, Careers, Leisureand Recreation, and Community Interaction. Domainswere measured in terms of Importance, Opportuni-ties, Attainment, Initiative, Stability and Satisfac-tion. The FQOLS-2006 asked about the family’spractical and emotional Support from Other Peopletogether, whereas the current study separated theconstructs of practical and emotional support.Questions pertaining to FQOL in the past werealso added, in order to gain a broader picture ofpresent FQOL.Results Results indicated that families consideredall the FQOL domains to be important. However,

Health, Family Relationships and FinancialWell-beingwere regarded as slightly more important thanPractical and Emotional Support from Others. Theattainment of Family Relationships, Health,Values,and Leisure and Recreation were rated as quite a bit,but Practical Support from Other People was onlyrated as a little. Families were generally satisfiedwith all FQOL domains, but they were satisfiedwith their Family Relationships and they were neithersatisfied or dissatisfied with their FinancialWell-being.Results also indicated that there was a need todistinguish between the provision of practicaland emotional support from others, because theattainment of emotional support was rated at aslightly higher level than practical support.Conclusions The FQOLS-2006 provided a compre-hensive measure of FQOL, which, with some addi-tional modifications, could be used to better informservice provisions and ultimately enhance thequality of life of people with intellectual/developmental disabilities and their families.

Keywords Australia, caregiver perceptions, familyquality of life, FQOLS-2006, practical andemotional support

Introduction

Although quality of life (QOL) has been researchedwidely in the human services since the early 20thcentury, it is only over the past few decades thatthere has been a growing interest in QOL in thedisability field. QOL encompasses objective and

Correspondence: Dr Fiona Rillotta, Disability and CommunityInclusion, Flinders University, GPO Box 2100, Adelaide, SA 5001,Australia (e-mail: [email protected]).

Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2011.01462.x

volume 56 part 1 pp 71–86 january 201271

© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd

subjective measures concerning life domains such asan individual’s health, financial situation, emotionalstate, vocational pursuits, social involvement, recre-ation, interpersonal relationships, and personalvalues and potential (Brown et al. 2000; Schalocket al. 2002; Schalock 2004a; Verdugo et al. 2005).Core QOL domains in the disability field alsoinclude the availability of and access to supports:both formal, like disability service providers, andinformal, like extended family and friends (Schalock2004b; Summers et al. 2005; I. Brown et al. 2006;R. I. Brown et al. 2006; Isaacs et al. 2007).

The concept of family quality of life (FQOL) hasrecently been recognised as an important extensionof QOL in the field of intellectual/developmentaldisability (e.g. Poston et al. 2003; Turnbull et al.2004; Aznar & Castanon 2005; Jokinen & Brown2005; Hoffman et al. 2006; Isaacs et al. 2007; Davis& Gavidia-Payne 2009; Schippers & Van Boheemen2009). This shift in focus from QOL from the indi-vidual’s perspective to QOL from the family’s per-spective came from an awareness of the increasingnumbers of people with an intellectual disability(ID) who were living at home, with family membersplaying a central role in their support (Poston et al.2003; Brown et al. 2004). Coupled with this, camethe realisation that an individual’s environment,including their family environment, contributes sig-nificantly to their QOL (Brown & Brown 2004).Families are seen as a significant social resource;therefore it is fundamental to gain an understandingof FQOL in order to help sustain family function-ing (Llewellyn et al. 2003; Isaacs et al. 2007;Burton-Smith et al. 2009a; Zuna et al. 2009).

The family-centred domains added to QOLdomains to develop the concept of FQOL include:Parenting (e.g. taking care of every child in thefamily, and helping children to make friends)(Beach Center on Disability 2003; Hoffman et al.2006); and Family Interaction or Family Relationships(e.g. harmony within the family unit – support,trust and companionship) (Beach Center on Dis-ability 2003; I. Brown et al. 2006; Hoffman et al.2006; Isaacs et al. 2007). These domains, along withthe above-mentioned QOL domains, form the basisfor conceptualising, measuring and applying FQOL.Park et al. (2003) defined FQOL as the opportunityfor families to have their needs met, to enjoy lifetogether and to engage in things that they consider

important. Family-centred approaches to servicesupport provisions have the benefit of empoweringfamilies to attain such elements of FQOL (Brown &Brown 2004; Dempsey & Keen 2008). A Canadianstudy (Brown et al. 2003) found that families placedmore emphasis on immediate (internal) family rela-tionships and supports than on extended family(external) supports. Families commonly receivedvery little practical support (e.g. monetary supportor assistance with babysitting or housework) fromrelatives, friends and neighbours; however, therewas more variation in the emotional support (e.g.having someone who listens or ‘a shoulder to cryon’ at times of grief or distress) they received(Brown et al. 2003). Research of this kind has notbeen conducted in Australia and, in fact, there hasbeen relatively little FQOL research in Australia.

Although support services and the health systemsmay be quite similar across Western cultures, thereare some differences in terms of criteria for govern-ment funding and the amounts or types of fundingand support available. For example, in South Aus-tralia people with disabilities and their immediatecarers are entitled to government Disability SupportPension, Mobility Allowance and Carer Allowance(Department of Human Services Centrelink Austra-lia 2010), whereas, in some other nations, and evendifferent states of Australia, the amounts for suchpensions may vary and the government may alsohave implemented individualised funding (Laragy &Ottmann 2011) to support people with disabilities.Therefore, FQOL research is important in order toinvestigate the impact on families of various servicemodels in different countries.

Importantly, research has also been conductedinto the practical benefits of QOL research. Forexample, Schippers & Van Boheemen (2009)emphasised that FQOL measurement has revealedthe increasing importance of partnerships betweenthe individual with a disability, their immediatesocial environments (family and friends), genericsocial services and disability-specific services. As aresult, FQOL research has been applied to facilitatechanges to the legislation associated with thesupport paradigm for ‘vulnerable citizens’ in theNetherlands. Previously, service providers wereresponsible for the total well-being of the individu-als they support, but services are now seen as con-tributors, sharing the responsibility of maintaining

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F. Rillotta et al. • Family quality of life in Australia


QOL with the individuals and others in their lives(Schippers & Van Boheemen 2009). This is oneexample of the practical implications of QOLresearch. By using the systematic components of theFQOL framework proposed by Zuna et al. (2009),it is possible to gain an increased understanding ofthese positive partnerships that contribute to QOL.

From an Australian perspective, FQOL is rel-evant to current disability legislation, policy andpractice. There are over 500 000 people with anintellectual/developmental disability in Australia(approximately 3% of the population) (AustralianInstitute of Health and Welfare 2008). Over recentdecades there has been a wider acceptance ofpeople with disabilities in the community, togetherwith increased pressure on families to care for theirchild or children with a disability at home, ratherthan placing them in institutional settings (Brownet al. 2004). For example, in 1998, the majority ofpeople with an ‘intellectual impairment’ in Australialived with their parents (49%), or in supportedaccommodation (22%) (Australian Bureau of Statis-tics 1998). More recent statistics have indicatedthat, 76% of people with disabilities (all types) livewith family, with about 18% living on their own(Department for Families and Communities 2007).

The Australian Disability Discrimination Act1992 and the Disability Services Act 1986 (Com-monwealth of Australia 2007, 2009) are similar tothose of other developed nations, and were intendedto enhance QOL by ensuring that people with dis-abilities have the same rights as other people toaccess all aspects of society. In Australia this has ledto people with disabilities and their families beinggiven more control over their lives (Brown et al.2004). In particular, people with disabilities nowhave more access to, and participation in, educationand vocational programmes, in less restrictive envi-ronments. At the same time, however, these changeshave, in some cases, significantly affected the wholefamily of the person with a disability. It is thereforeimportant for services to acknowledge associatedpersonal issues of all family members and theircollective impact on FQOL (Brown et al. 2004).

In Australia, as in other countries, there havebeen changes in the structure of families. Forexample, from 1996 to 2006, couple families withchildren decreased; couple families without childrenincreased; and single-parent families also increased

(Australian Bureau of Statistics 2001, 2006). Thismeans that what constitutes or defines ‘family’ isopen to interpretation and changes over time.However, in spite of such diversity, families acrosssocieties are consistently expected to nurture chil-dren, to financially support their members and totransmit cultural and moral values (Australian Insti-tute of Family Studies et al. 2009). The changingnature of families and society makes it important toresearch the FQOL of families that have a memberwith an intellectual/developmental disability inAustralia.

Only a few studies in Australia have exploredparticular aspects of FQOL in the intellectual/developmental disability field (Browne & Bramston1996; Brown et al. 2004; Skok et al. 2006; Burton-Smith et al. 2009a,b; Davis & Gavidia-Payne 2009).The earliest of these studies (Browne & Bramston1996) found that life priorities (i.e. what was con-sidered important) did not differ between familieshaving a member with an ID and families withouta member with an ID. However, families having amember with an ID reported lower levels of satis-faction with QOL than those without, particularlyin the areas of material well-being, health and pro-ductivity (Browne & Bramston 1996). Browne andBramston used the Comprehensive Quality of LifeScale (ComQol-4; Cummins 1993), which exam-ined objective and subjective well-being with respectto importance and satisfaction. It did not, however,investigate other concepts such as the efforts thefamilies made to attain particular aspects of QOL,or the quality of family interaction. Their study wasalso limited in that it used a questionnaire designedto assess individual QOL to assess FQOL. Morerecently, Burton-Smith et al. (2009a) have presentedAustralian results from an international, multi-centre investigation of burden of care, mental healthand life satisfaction. By using the Family NeedsSurvey (Bailey & Simeonsson 1988), they foundthat people caring for a family member with adisability reported levels of well-being and generalhealth that were lower than the norm. However,carers did not consider caregiving as burdensome(Burton-Smith et al. 2009a). Even though familydomains such as Need for Support, Financial Need,and Family Functioning were explored, Burton-Smith et al. assessed the circumstances of theprimary caregiver, rather than considering FQOL




as a whole, and only one item on the survey relatedto disability.

Skok et al. (2006) and Davis & Gavidia-Payne(2009) found that Australian parents of childrenwith an intellectual/developmental disability (schoolage and early childhood respectively) who receivedsignificant social support experienced lower levelsof stress, increased levels of well-being and betterFQOL. These authors therefore suggested thatservice providers needed to adopt a family-centredapproach, including involving the extended familyto ensure that caregivers have adequate social sup-ports in place. Skok et al. (2006) used a batteryof tests examining stress, satisfaction, adaptationand social support, while Davis & Gavidia-Payne(2009) used the Beach Center FQOL Scale (BeachCenter on Disability 2003), which has similarproperties to the Family Quality of Life Survey:Main Caregivers of People with Intellectual or Devel-opmental Disabilities (FQOLS-2006) used in thecurrent study. Similarly, based on results fromdata collected using the FQOLS-2000 (an earlierversion of the survey used in the current study),Brown et al. (2004) proposed that families oftenfelt excluded from society and community/leisure/recreation activities because of restrictions resultingfrom having a member with an intellectual/developmental disability. These authors suggestedthat, if opportunities for friendship networks andsupports were expanded, then community supportsfor families would also grow. Furthermore, asfriendships and supports may change over time,new valued relationships may be made throughinvolvement in the disability sector with peoplewho have had similar experiences (Brown et al.2004). Brown et al. also discussed families’ con-cerns associated with the relationship between thefamily and support staff from disability services.Davis & Gavidia-Payne (2009) also explored thisissue and found that, while family experiences withservice providers were generally quite positive,parents’ perceptions of, and experiences with, ser-vices were significantly related to their satisfactionwith FQOL. These findings suggest that family-centred professional support has a significantinfluence on FQOL.

While FQOL has been accepted as an importantconstruct in disability, questions remain concerningthe extent to which FQOL issues are similar in

different countries and the extent to which existingmeasures of FQOL can be used effectively in differ-ent countries. The aim of the present study wastherefore to investigate the FQOL of Australianfamilies who have a member with an intellectual/developmental disability, using the FQOLS-2006

(I. Brown et al. 2006). This measure of FQOL wasdeveloped with the intention of being appropriatefor use in different countries.

Method

Participants

Of approximately 150 people randomly selectedfrom the South Australian government’s maindisability service provider client database, 42

agreed to participate (response rate = 28%). Eventhough the sample was random, it seems likely thatthose who agreed to participate may have beenthose who had the time, support in the home andinterest in participating. Thus, the results mayunderestimate the family-related difficulties andconsequent FQOL of families that have a child orchildren with a disability. A majority were mothersaged between 25 and 78 years. Family memberswith a disability were aged from 2 to 46 years anda majority had an ID (cause unknown) or autismspectrum disorder. All participating families werefrom metropolitan Adelaide, the capital city ofSouth Australia. However, some families livedfurther from the central business district thanothers, and some were from wealthier suburbsand had higher social economic status than others.These demographic details are shown in the Resultssection (Tables 1,2).

Measure

Face-to-face interviews were conducted using theFQOLS-2006 (I. Brown et al. 2006). Nine domainsof FQOL were assessed (Health of the Family,FinancialWell-being, Family Relationships, Supportfrom Other People, Support from Disability-RelatedServices, Influence ofValues, Careers, Leisure and Rec-reation, and Community Interaction). These domainswere measured using qualitative and quantitative(5-point Likert scale) questions related to the con-cepts of Importance, Opportunities, Attainment,




Initiative, Stability and Satisfaction. A recentConfirmatory Factor Analysis using data from fourcountries suggested that four indicators (Initiative,Opportunity, Attainment and Satisfaction) can reli-ably represent each of the nine FQOL domains(Isaacs et al. 2011). Importance and Stability werefound to have low variance, indicating that theyremain stable (Isaacs et al. 2011). Based on infor-mation provided during the pilot phase of thecurrent study, Practical and Emotional Support fromOther People was divided into two separate measur-able components, rather than dealing with themtogether as specified in the FQOLS-2006. As it wasnot possible to undertake longitudinal analyseswithin the scope of the current research, questionspertaining to FQOL in the past were also added toeach domain [e.g. ‘In the past has your family’slevel of health been any different to what it is now?If yes, please explain when and why (includingbefore child(ren) were born)’] in order to gain aholistic lifespan perspective of FQOL includingan assessment of the impact of developmental/transitional stages of the child with a disability

(see Rillotta et al. 2010). Participants were requiredto sign a consent form and they were provided withan information sheet about the study. With partici-pants’ permission, a voice recorder was used inorder to obtain further information and verbatimstatements.

Table 1 Family characteristics

Gender of respondentMale 4.8% (2)Female 95.2% (40)

Relationship to member with intellectual disabilityMother 88.1% (37)Father 2.4% (1)Grandparent 2.4% (1)Sibling 2.4% (1)Others (foster mother, voluntary carer) 4.8% (2)

Age of respondent in yearsMean 47.2Age range 25–78

Employment status of respondentEmployed (full-time or part-time) 43%Not employed 57%

Family structureOne-parent 31.0% (13)Two-parent 66.7% (28)Other 2.4% (1)

Number of siblings to member with disabilityOne 33.3% (14)Two 21.4% (9)Three 21.4% (9)Four or more 12% (5)

Families with >1 person with a disability 16.7% (7)

Table 2 Characteristics of the person with a disability

GenderMale 64.3% (27)Female 35.7% (15)

Age in yearsMean 17.3Age range 2–46

Type of disabilityIntellectual disability unknown 38.1% (16)Autism 26.2% (11)Down’s syndrome 9.5% (4)Developmental delay 9.5% (4)Cerebral palsy 4.8% (2)Foetal alcohol syndrome 4.8% (2)Rhett syndrome 2.4% (1)Others (cru du ca chat, sensory

processing disorder)4.8% (2)

Additional conditionsBehavioural 76.2% (32)Speech/language 73.8% (31)Mood/expression/anxiety 59.5% (25)Motor control/coordination 59.5% (25)Feeding/eating 50.0% (21)Sensory integration 47.6% (20)Seizures 38.1% (16)Vision 33.3% (14)Gastrointestinal 28.6% (12)Asthma 19.0% (8)Hearing 19.0% (8)Severe psychiatric disturbances 14.3% (6)Heart 4.8% (2)

Level of disability-related support requiredAlmost all aspects of life 9.5% (4)Most but not all aspects of life 23.8% (10)Some aspects of life 23.8% (10)Only a few aspects of life 31.0% (13)Does not require disability-related support 11.9% (5)

Level of CommunicationVery little meaningful communication 9.5% (4)Basic needs and wants 26.2% (11)Needs, wants and some ideas in a

meaningful way21.4% (9)

Within limited range of topics in ameaningful way

33.3% (14)

About a wide variety of topics in ameaningful way

9.5% (4)




Procedure

Ethics approval was obtained from the researchers’university and from the South Australian govern-ment’s main disability service provider. An impor-tant ethical consideration was to ensure the safetyof the researcher while conducting interviews atfamily homes (e.g. having access to cell phone). Theuse of the FQOLS-2006 in Australian was first dis-cussed by two focus groups, each with four profes-sionals working for the government’s main disabilityservice provider, and two regional managers werealso consulted individually. Their first concern wasthe need to use the wording ‘developmental disabil-ity’ for those in early childhood who do not receivethe diagnosis of ID until after 6 years of age inAustralia because of the difficulties associated withaccurately identifying the condition. The currentresearcher provided this feedback to the surveyauthors and similar issues were later recognised byother researchers as well. Consequently, the surveyauthors added the words ‘or developmental’ to thetitle of the FQOLS-2006 and it refers to the familymember as a person with an ‘intellectual or devel-opmental disability’ in the questions throughout.Focus groups also expressed that it was necessaryto divide Practical and Emotional Support from OtherPeople, because they could be attained at differentlevels as explained below, and to add questionsabout FQOL in the past in each domain, to gain alifespan perspective of FQOL, as discussed previ-ously. Study participants were recruited throughthe disability organisation which first posted out aletter. Staff then phoned prospective families torequest permission to forward their phone numberto the first author. Subsequently, the first authorcontacted families directly.

Four pilot interviews were conducted to test themethods of inquiry, to gauge how long interviewswould take and to check for any concerns from par-ticipants. Pilot participants were selected specificallyby two regional managers of the disability serviceprovider. Seven families were approached becausethey were likely to be interested, available and ableto contribute constructive critical feedback on theFQOLS-2006, the FQOL topic and the interview-ing technique. Three of those family membersagreed to participate (response rate = 42.9%).There was also a fourth opportunistic pilot study

participant, from the researcher’s family network,who provided a pilot for self-administered surveys.At the end of the pilot interviews, participants wereasked if they felt comfortable answering the ques-tions, if they felt that the survey was comprehensiveenough (covering all issues relevant to theirFQOL), and if they would like to make any sugges-tions or recommendations. Results from the pilotstudy confirmed issues previously raised by thefocus groups. In particular, the separation of practi-cal and emotional support was confirmed whenthese participants were asked, ‘Would you say theemotional support is different to the practical support?’One participant responded, ‘yeah it is . . . somepeople can handle helping you out if you need to gosomewhere or you need to get something [practicalsupport], and others are probably better for the emo-tional side of things . . . I guess that’s why you’ll ring acertain person for this and then you’ll ring somebodyelse for something else because you know they’re betterat doing that’. No further changes to the FQOL-2006 or to the study methodology were required.Interviews generally took between 1 and 3 h andwere conducted in three regions of metropolitanSouth Australia. A universal spss database was usedfor data analysis, to enable cross-cultural compari-sons with international data. Qualitative data wereanalysed into themes.

Results1

Descriptive data

Table 1 displays the demographic characteristicsof participants (main caregivers of people withintellectual/developmental disabilities), and theirfamily characteristics. Participants were mostlymothers and the majority were aged in their mid tolate 40s. Approximately two-thirds were part of two-parent families. Seven families had more than onemember with an intellectual/developmental disabil-ity and each was engaged in different leisure andrecreation or day options activities and had differentlevels of disability-related support needs and inter-ests, which impacted on overall FQOL in different

1 In order to protect the confidentiality of participants, pseud-onyms have been used to replace actual names in all direct quota-tions when reporting results.




ways. For example, one family had a member withan ID who was at school-leaving age, and was aParalympics athlete, studying through correspon-dence with tutor support, and volunteering. Theother member with an ID in the same family was inher final year of school, and her mother expresseddeep concern about what she could/would do whenshe finished school. The well-being of the familycould depend on the ages of the two members withdisability; however, in this case even though theolder member with a disability was now settled, thefamily had to experience the anxiety and uncer-tainly about what their child would do once theyfinished school two times. In another case a motherexplained, ‘they’re very different; John, he’s more laidback; if you were in a crowd he’d just stand back andwatch, whereas Stephen, he goes in for the kill.’ Thismeant that the family life could have been morestressful because the family spent a considerableamount of time juggling the two different lifestyles.Also, it could have meant that the more intensesupport, time and attention required by onemember with an intellectual/developmental disabil-ity, detracted it from the other member. Generally,this also meant that families with more than onemember with an intellectual/development disabilityreported mildly lower levels of FQOL in mostdomains including health, relationships, communityinvolvement and support, than families who onlyhad one member with a disability; however, asnoted below, the same could be said for any familywhich consisted of siblings of the member with adisability. It is unknown whether family life isimpacted negatively by the fact that there are twomembers with a disability or if there are competingdemands of siblings in general.

Table 2 shows that the majority of familymembers with intellectual/developmental disabilitieswere male and their ages varied from 2 to 46 years,with most in their late teens. The most commondisability type was ID (cause unknown), followedby autism spectrum disorder. ID may be the mostrepresented disability type because the specificcause of many intellectual or cognitive impairmentsis often difficult to diagnose. All family memberswith disabilities had a number of additional condi-tions. A little under half (46%) had five or fewerconditions, and just over half (54%) reported sixor more conditions. The most common reported

condition, for all except 10 people, was behaviouralproblems, followed closely by speech and/or lan-guage difficulties; just over half had mood/expression/anxiety problems and just over half hadgeneral problems with motor control/coordination.The least frequently occurring additional conditionswere severe psychiatric disturbances (e.g. schizo-phrenia), and two people with a disability had heartproblems. According to the Australian Instituteof Health and Welfare (2008), in Australia it iscommon for people with IDs to have secondary dis-abilities and/or conditions, such as psychiatric issuesor communication difficulties. The type of disabilityand support needed – ranging from cognitive oremotional support to assistance with daily livingactivities – can influence stress levels in the familyas well as how families cope with the challengesthat come with having a child with a disability.

It can also be seen in Table 2 that there was awide spread of disability-related support required,with nearly a third requiring support for only a fewaspects of life and nearly a quarter requiring supportfor either some aspects or most, but not all, aspects oflife. The question concerning level of disability-related support from the FQOLS-2006 was idealfor the Australian sample, because in Australiapeople with disabilities are described in terms oftheir support needs and not their disability severitylevel. Furthermore, Table 2 shows that the levelof communication that best described the familymembers with a disability varied; one-third wereable to communicate ‘within a limited range oftopics in a meaningful way’, and just over a quarterwere able to communicate ‘basic needs and wants’.These results indicate that the sample was represen-tative of people with a variety of conditions, supportneeds and communication levels.

Family quality of life measurement dimensionsand domains

Table 3 shows the mean scores and standard devia-tions for each measurement concept in each of theFQOL domains.The reliability of the FQOLS-2006

in terms of Cronbach’s alpha was found to be low tomoderate across the measurement dimensions (i.e.Importance = 0.24, Attainment = 0.69, Opportuni-ties = 0.79, Stability = 0.45, Satisfaction = 0.82, Ini-tiative = 0.48), indicating good internal consistency.




Qualitative explanations and common themes asso-ciated with each of these measurement dimensionsare discussed in terms of the FQOL domains thatwere found to be at the higher and lower ends of thescales.This reporting is designed to provide a morein-depth understanding of the quantitative results.Community Interaction and Leisure and Recreationare not discussed in detail, because on average theywere rated in the mid-range for each measurementdimension. Practical and Emotional Support fromOther People was assessed separately to evaluateany differences between them.

With respect to importance, as shown inTable 3, all domains were considered to be quiteimportant or very important (rated between 4 and 5).Health of the Family and Family Relationships wereclosest to very important; and Practical and EmotionalSupport from Other People was rated between some-what important and quite important (3 to 4). Thehealth of the whole family was seen as important asthe following respondent explained: ‘life’s certainlyeasier if everybody is well, if someone’s sick, then you’relimited to what you can do . . . if someone isn’t well,well you do what you have to do to get by . . .’.

All aspects of family life were thought to beattained by families. Family Relationships andHealth of the Family were enjoyed quite a bit to agreat deal (4 to 5); Practical and Emotional Supportfrom Other People was received a little to some (2 to3); and all other domains were rated as beingattained some to quite a bit (3 to 4).

Families were also generally satisfied with allaspects of family life. For example, Family Relation-ships and Influence ofValues were rated between satis-fied and very satisfied (4 to 5). The following quoteillustrates the influence of values on FQOL:

You never can anticipate what it’s like unless youlive with a person [with a disability] . . . I didn’tunderstand before I had Nicole the depth of theeffects that it can have on your family . . . we’reall God’s children and we’re all equal . . . [but]value judgments can be made incorrectly becauseof just misunderstanding . . . they’ve [people whoare not caring for someone with an ID] only gottheir own experiences to go by . . .

With further respect to satisfaction, the otherdomains were rated between neither satisfied or dis-satisfied to satisfied (3 to 4), with FinancialWell-beingclosest to the neither satisfied or dissatisfied rating of3. Despite the average results indicating satisfactionwith practical and emotional support from others(Table 3), as can be seen in Table 5, a relativelylarge percentage of participants indicated that theywere not satisfied (including neither satisfied ordissatisfied) with practical and emotional supportfrom others. This result should be considered withrespect to possible improvements to this factoraffecting FQOL.

In the concluding section of the FQOLS-2006,participants were asked to rate overall (globally)how satisfied they are with their FQOL using a

Table 3 Family quality of life domains and dimensions

Domains

Dimensions of family quality of life (mean and SD) (possible score range: 1 to 5)

Importance Attainment Satisfaction Opportunities Initiative Stability

Health 4.88 (0.40) 4.08 (0.69) 3.78 (0.82) 3.63 (1.25) 3.87 (1.03) 3.11 (0.83)Financial 4.50 (0.78) 3.05 (1.15) 3.30 (1.02) 2.57 (1.09) 3.39 (1.33) 2.89 (0.66)Relationships 4.85 (0.43) 4.34 (0.63) 4.36 (0.90) 3.72 (0.97) 4.13 (0.84) 3.38 (0.71)Practical support/others 3.49 (1.52) 2.08 (1.28) 3.59 (1.12) 2.68 (1.40) 2.53 (1.48) 3.00 (0.59)Emotional support/others 3.97 (1.18) 2.77 (1.33) 3.75 (1.11) 3.36 (1.10) 3.03 (1.33) 3.03 (0.56)Support/services 4.40 (1.03) 3.17 (1.34) 3.54 (1.07) 3.19 (1.31) 3.66 (1.34) 3.26 (0.66)Values 4.14 (1.11) 3.91 (1.07) 4.17 (0.70) 3.71 (1.03) 3.38 (1.23) 3.11 (0.32)Careers 4.24 (0.96) 3.43 (1.43) 3.94 (0.80) 3.55 (1.12) 3.59 (1.43) 3.45 (0.62)Leisure 4.38 (0.71) 3.47 (0.86) 3.78 (0.86) 3.50 (1.06) 3.77 (0.93) 3.51 (0.72)Community 4.00 (1.14) 3.18 (0.94) 3.71 (0.83) 3.56 (0.99) 3.24 (1.13) 3.21 (0.60)




5-point scale (1 = very dissatisfied to 5 = very satis-fied). Overall satisfaction ratings that were equiva-lent to a rating of satisfied (mean = 3.9, SD = 0.91)were found to be consistent with the mean of thetotal of satisfaction ratings for the individualdomains. Overall satisfaction with FQOL and themean of the combined satisfaction of all domainswere also highly and significantly correlated(r = 0.64, P = 0.000). Overall (global) satisfactionalso correlated with overall attainment (the mean ofthe total attainment scores) in all areas of FQOL(r = 0.46, P = 0.005). Furthermore, the mean of thetotal of satisfaction ratings for all FQOL domainswas significantly related to the mean of the totalattainment scores (r = 0.58, P = 0.000).

Table 3 also shows that, on average, familiesreported that there were a few to some opportuni-ties with respect to FinancialWell-being and PracticalSupport from Other People, whereas there were someto many opportunities in all other life areas.

Participants also considered that they made effort(initiative) in all areas of life to a certain extent.They felt that they made quite a bit to a great deal ofeffort with Family Relationships, a little to some effortwith Practical Support from Other People, and some toquite a bit of effort with all other life areas.

Family Relationships was mostly described asbeing important, and families were generally satis-fied that they attained good family relationships inlight of the effort they put in (e.g. ‘we are indepen-dent but dependent on each other’, ‘I don’t know whatwe would do without each other’ and ‘we look out foreach other and help if anything comes up’). Partici-pants commonly reported that the member with anintellectual/developmental disability was the focalpoint of the family (e.g. ‘if Tania has a bad day itstresses me out and that in then affects everyone else [inthe family]’). Given that the majority of participantswere from two-parent families, the reason for thestrong-bond or ‘close-knit’ family was attributed tothe relationship between the mother and father. Forexample: ‘We help each other . . . If I am doing some-thing my husband will watch the kids . . . We go placestogether, but we have to organise our son [with a dis-ability] – our family revolves around him’.

In addition, an important aspect of family rela-tionships which arose as a common theme in manyinterviews in the current study was the impact ofhaving a sibling with a member with an intellectual/

developmental disability. Table 1 shows that one-third of families consisted of one sibling to themember with an intellectual/developmental disabil-ity; just under a quarter had two siblings; and justunder a quarter had three siblings. Even thoughparticipants generally described their family rela-tionships as good, all families who had siblings ofthe member with an intellectual/developmental dis-ability (37 families; 88%) discussed the impact onsiblings and/or the importance of having time forall children in the family. This included siblingsfeeling that they did not get enough attention fromparents, or it could include being given increasedresponsibility for siblings. For example,

Because Daniel [member with ID] is so demand-ing it makes it difficult to have time . . . Sheree[Sister] doesn’t understand things either . . . Iguess Sheree feels that we don’t love her asmuch . . .

. . . we’ve made an effort to make sure that theother two [brothers] haven’t suffered because ofit [the disability of the family member] . . . Theywere given the opportunity and the responsibilityof discipline for a sibling that would normallynever be granted in a family . . . and theyrespected it . . . They [brothers] love John[member with ID] dearly . . . but they just havehad enough of him.

All elements of family life were generally pre-dicted to stay about the same or improve (stability)in the near future, except FinancialWell-being, whichwas rated as likely to decline or stay about the same(between 2 and 3). Given that FinancialWell-beingwas rated at the lower end of the satisfaction scaleand likely to decline, two examples are providedbelow to illustrate why this may be the case:

[Maintaining financial well-being] all hinges onJackson and Helen [members with disabilities]. . . At the moment we both care and we bothwork; if they end up being too higher needthen . . . one of us might have to take on thewholly and solely caring . . . we don’t want to goback that way, but sometimes you can’t help it.

. . . lack of financial well-being and the struggleto make ends meet and the struggle to deal withthe unexpected . . . is a very significant part of




the stress . . . and you’re not looking at luxuries,you’re just looking at necessities . . . You don’talways have control over what expenses areincurred on various things . . . this quarter it willbe an enormous gas bill, because I’ve been homemore, because I’ve been ill more and so thingslike that are out of my control . . .

Financial situation is linked to careers in thefamily. As can be seen in Table 1, just under halfof the main caregivers were employed either full-time or part-time. Of the mothers who were in theworkforce, over 65% indicated that they valuedwork as their social outlet, or as a break from thefamily. In addition, 65% of working main caregiv-ers were in a disability-related field, including per-sonal carers, support officers or teachers. Of thecaregivers who gave up their career to care for themember with a disability (59%), most (44%) pre-dicted that they would not work again; 28% indi-cated that they might work again, depending onthe progress of the person with a disability; and afurther 28% predicted that they would commenceworking again (when the family member goes toschool, or to vocational activities; or they move toout-of-home accommodation). Therefore, whenparticipants predicted an improvement in theirfamily’s ability to pursue and prepare for careers,they were likely to be referring to their children,because they are finishing school and pursuingadditional study, or are maturing and developingwork skills. This suggests that it may be importantto ask about caregivers’ careers separate to theirchildren’s career prospects.

The following quote represents the impact onthe family of the main caregiver either workingor leaving work to care for the member with adisability. This participant discussed both thebenefits and disadvantages associated withworking or not:

When you’ve got other stuff to cope with duringthe day . . . it’s a lot more pressure actually,working full time and dealing with a familymember with a disability as well, because youdon’t have the time . . . it’s a bigger rush . . .financially it’s probably better because we’re bothworking . . . , but . . . it makes the family a lotbusier, you are working harder . . . Emotionallyit’s better, but physically it’s not . . . You have to

be better at making choices . . . because you can’tdo everything . . . making the balance . . . havingthe outlet is good.

Outliers

It can be seen in Table 3 that the standard devia-tions were generally quite low across all the FQOLdomains and measurement concepts. It is importantto consider variance from the mean in order toassess the capacity of the measure to detect indi-vidual differences and identify families with verylow domain scores. Table 4 shows the domains andthe number of participants who selected at thelower ends of the attainment (i.e. hardly at all), andsatisfaction (i.e. dissatisfied or very dissatisfied) scales.

Table 4 shows that, in spite of the generally highmean scores on the FQOL domains shown inTable 3, there were a significant number of partici-pants who scored at the lower end of some of thedomain scales. In particular, it can be seen that41% said they attained Practical Support from OtherPeople hardly at all and 19% said the same withrespect to Emotional Support from Other People.In terms of satisfaction, 22% were dissatisfied orvery dissatisfied with their FinancialWell-being,14% said the same with respect to Support from

Table 4 Outliers at the lower end of the scale

Measurement concept and familyquality of life domains

Number ofparticipants

Attainment (hardly at all)Practical support from other people 17 (40.5%)Emotional support from other people 8 (19%)Support from services 6 (14.3%)Financial well-being 6 (14.3%)Careers 5 (11.9%)Values 2 (4.8%)Community 2 (4.8%)

Satisfaction (dissatisfied, very dissatisfied)Financial well-being 9 (21.5%)Support from services 6 (14.3%)Practical support from other people 5 (11.9%)Leisure and recreation 4 (9.5%)Health 4 (9.5%)Emotional support from other people 3 (7.1%)Family relationships 2 (4.8%)Community interaction 2 (4.8%)




Disability-Related Services and 12% also said thiswith respect to Practical Support from Other People.

In terms of dissatisfaction with Support fromDisability-Related Services, nearly a quarter of par-ticipants indicated that they did not know whereto go to obtain particular services. For example,

You’re not actually given information like “hereare all the services you need” . . . a lot of it’sword of mouth . . . there needs to be a bit moreinformation . . . When someone’s got a childdiagnosed with a disability automatically theyshould be given all this information that theyneed . . . [and] sent to the right department.

In addition, nearly one-third of participants saidthat they often did not bother with services becauseof waiting lists, or the services just do not helpenough. For example,

I found . . . that these things are available if youuse them all along, but if you suddenly wantsome service and you’ve never used it beforethen . . . you’re on the waiting list and so I don’tlook into that very often, unless it becomes sodesperate.

Practical and emotional support fromother people

As discussed previously, in this Australian study, adifferentiation was made between Practical and Emo-tional Support from Other People, including relatives,friends and neighbours. Generally, it was found thatrelatives and friends were more willing to provideemotional support, such as an encouraging hug oran ear that listens, than practical assistance, such asmoney or help with housework. Table 5 shows thedifferences between the two kinds of support ineach of the measurement concepts. It can be seenthat emotional support was considered to be gener-ally more important and attained more, with moreopportunities and initiative associated with it. Therewas, however, not much difference in rated stabilityand satisfaction with the two types of support. Itshould also be noted from Table 5, as already men-tioned, that 46% of respondents were not satisfied(including neither satisfied or dissatisfied) withpractical support. Thus, there would seem to beconsiderable scope for improvements in practicalsupport from other people.

In commenting on the two types of support,a participant explained, ‘I guess we don’t look tofriends . . . we don’t expect practical things from otherpeople . . . we do things ourselves . . . that’s why we’vesurvived . . . but emotionally, yes, it is important for usto be in contact with other people and not just in thedisability sector’.

Discussion

The current study provides further insight to themeasurement of FQOL, and to the issues affectingAustralian families that have a member with anintellectual/developmental disability. When providedwith the opportunity to make any additional com-ments about their FQOL in the final summarysection of the FQOLS-2006 (‘Overall FamilyQuality of Life’), participants did not raise any newfamily-related issues that had not already been dis-cussed throughout interviews. This suggests that the

Table 5 Breakdown of practical and emotional support from otherpeople ratings

Practical Emotional

ImportanceHardly/a little 27% 14%Somewhat 14% 19%Quite/very 59% 67%

OpportunitiesHardly any/a few 40% 22%Some 34% 36%Many/great many 26% 42%

InitiativeHardly at all/a little 55% 36%Some 14% 28%Quite a bit/a great deal 31% 36%

AttainmentHardly at all/a little 70% 43%Some 11% 26%Quite a bit/a great deal 19% 31%

StabilityGreatly decline/decline 11% 8%Stay about same 75% 78%Improve 14% 14%

SatisfactionVery dissatisfied/dissatisfied 14% 9%Neither satisfied or dissatisfied 32% 33%Satisfied/very satisfied 54% 58%




FQOLS-2006 provided a comprehensive measure ofthe FQOL of Australian families having a memberwith an intellectual/developmental disability. Practi-cally, all domains – Health of the Family, FinancialWell-being, Family Relationships, Support from OtherPeople, Support from Disability-Related Services,Careers, Influence ofValues, Leisure and Recreation,and Community Interaction – were rated of highimportance (i.e. quite important or very important),and qualitative comments confirmed that the ques-tions asked within each domain were relevant to theQOL of the families concerned. The lack of varia-tion in importance across domains, which wasexpected because the FQOLS-2006 was developedto represent aspects of high relevance to FQOL,suggests that it may not be necessary to ask thisquestion, except where there might be a specificreason for doing so [this was also reiterated in thestatistical tests conducted by Isaacs et al. (2011) inthis issue]. Omitting the importance concept wouldhave the benefit of reducing the time required toadminister the questionnaire. The results also sup-ported the only major change made in administer-ing the FQOLS-2006, which was to separate thequestions on Practical and Emotional Support fromOther People.

In terms of satisfaction with aspects of FQOL,the results of the current study are consistent withthose of Burton-Smith et al. (2009a) concerningaspects of life that Australian families value. Burton-Smith et al. found that family carers of people withdisabilities were most satisfied with safety, standardof living, personal relationships and health, whereasthey were less satisfied with community involve-ment, future security and achievement in life. In thecurrent study families were satisfied to very satisfiedwith Family Relationships (personal relationships),and Influence ofValues (standard of living) andneither satisfied or dissatisfied to satisfied with Healthof the Family (health), and Community Interaction(community involvement). However, FinancialWell-being was rated slightly lower, being closest toneither satisfied or dissatisfied in the current study,whereas standard of living, which arguably couldinclude FinancialWell-being, was rated high on satis-faction in Burton-Smith et al.’s study. This mayreflect genuine differences between participants inthe two studies or it may reflect differences in thewording of questions concerned with these related

QOL domains. Support from Disability-RelatedServices and Practical and Emotional Support fromOther People were also assessed in the present study,and both were rated between neither satisfied ordissatisfied and satisfied.

Overall, the results of the current study providefurther evidence of the validity and reliability of theFQOLS-2006 for use in cultures other than theUSA. Findings suggest that all the FQOL domainswere relevant to the Australian families in the studyand they were able to answer questions using all themeasurement concepts (importance, opportunities,attainment, initiative, stability and satisfaction). Thefindings of the present study will be able to contrib-ute to cross-cultural comparisons, evaluating theuniversal properties of the FQOLS-2006. Thepurpose of such future research is to ascertain simi-larities and differences in FQOL across variouscountries and to collaborate on strategies toimprove FQOL. Consistent with previous QOL/FQOL literature (e.g. Schalock et al. 2002; Brownet al. 2004; Summers et al. 2007), there was evi-dence that the various life domains and measure-ment concepts were interlinked. For example,practical Support from Other People was not asattained to the extent of other aspects of FQOL.Qualitative comments suggested that some familiesmade less effort to obtain practical support becausethey did not want to burden other people, in spiteof evidence that families having a member with adisability generally have higher physical and emo-tional demands and therefore need more supportfrom other people (Brown et al. 2003).

The different results obtained from asking aboutpractical and emotional Support from Other Peopleseparately are consistent with the research of Brownet al. (2003) in their Canadian FQOL study. Theyfound that families with a member with an ID gen-erally received very little practical support fromrelatives, friends and neighbours, and there wasmore variance in the emotional support thatfamilies received. A further worthwhile distinctionmight also be made between support from extendedfamily such as grandparents, aunties and uncles andfrom other people such as friends, colleagues orneighbours, as discussed by Brown et al. (2003).Davis & Gavidia-Payne (2009) found that familiesrated the support they received from extendedfamily higher and more likely to impact on various




aspects of FQOL than the support received fromfriends, which was only found to influence emo-tional well-being. In the current study, qualitativecomments accompanying quantitative ratings madeit possible to identify the source of the support thatwas valued by families. For example, main caregiv-ers who were working indicated that they valued thesocial aspects of work, and colleagues providedvaluable support. This is consistent with commentsby Burton-Smith et al. (2009a) that lack of employ-ment opportunities not only impacts on the familyfinancially but also decreases the opportunities forpersonal/social networks of the family members.Consistent with Brown et al. (2003), the value andpriority placed on internal or immediate family, andthe efforts made to uphold strong relationshipswithin the family, suggest that families needed torely on each other rather than other external meansof support for their FQOL to be fulfilled. This isalso consistent with the findings of Llewellyn et al.(2003) that elements external to the family unitwere more likely to be seen as being a burden.

The findings associated with sibling issues in thecurrent study are relevant to a separate area ofresearch associated with the impact of having amember with an ID on siblings (e.g. Strohm 2002;Hodapp et al. 2005; Giallo & Gavidia-Payne 2006;Orsmond & Seltzer 2007; Mulroy et al. 2008).Further analyses of the qualitative data from thecurrent study are warranted. Themes from thequalitative data associated with siblings are inaccordance with previous research. For example,consistent with the work of Brown et al. (2004), inthe current study main caregivers explained thatsiblings presented as feeling second to their siblingwith a disability. In some cases this was associatedwith positive reactions, such as feeling enriched andlearning important lessons but, in a few instances, itwas associated with delinquent or problem behav-iours because they had not received enough atten-tion from their parents. These results suggest thatthis is an important area of FQOL to be assessedand that it deserves separate attention from serviceproviders.

Although mean ratings of satisfaction with FQOLdomains were relatively positive in the present study– suggesting that the majority of participants weremoderately to highly satisfied with FQOL domains– evidence that the FQOLS-2006 is sensitive to

individual differences across families was providedby the fact that some families rated their satisfac-tion with and attainment of some FQOL domains,such as FinancialWell-being and Support fromDisability-Related Services, at the lowest rating levels.This means that mean results should not be takento imply that the services were satisfactory in allcases, and the FQOLS-2006 can be useful forservice providers to identify families with lowFQOL that might require additional support. Thereis also the possibility that FQOL measures could besubject to social desirability responding such thatrespondents might feel obliged to answer in a posi-tive way. Specific concerns for service delivery thatwere expressed by families with higher supportneeds in the current study included sibling issues,families at risk of relationship breakdown, signifi-cant financial concerns and uncertainty aboutwhere to go to obtain services.

There were a number of limitations to thepresent study. It used a sample of primary caregiv-ers from the metropolitan region of one disabilityorganisation in South Australia. However, thisorganisation provided a generic disability supportservice, meaning that the sample was representativeof all intellectual/developmental disability types,rather than being restricted to the clientele oforganisations for specific diagnoses such as autismor Down’s syndrome. Further research is needed toexpand the present assessment of the FQOLS-2006

to organisations with different types of disabilitiesand to rural areas that may have different supportservices (e.g. see, Best et al. 2000; Mackey &Goddard 2006; Raghavendra et al. 2007; Lee &Browne 2008; Eley et al. 2009). In a practical sense,it is important to research various disability typesbecause access to support services may be compli-cated when there are additional disabilities. Forexample, services have previously been reported tolack resources to help families with a member withdual disabilities (Brown et al. 2004). Consequently,as support from disability-related services has beenfound to be important to FQOL, disability type oradditional conditions can have a major impact onthe well-being of the family, but further research isrequired to support these assumptions.

Further research should also endeavour toassess FQOL from multiple perspectives in thefamily, such as fathers, siblings, grandparents and,




importantly, the personal views of the person with adisability (e.g. Brown et al. 2003; Brown & Brown2004; Hoffman et al. 2006; Werner et al. 2009).Finally, more research is needed into the practicalusefulness of the FQOLS-2006 for assessment andservice delivery.

Despite the above limitations, the present studyhas suggested that the FQOLS-2006 has the poten-tial, with some modifications, to provide a reliableand comprehensive assessment of FQOL in an Aus-tralian context. Its capacity to discriminate betweenfamilies with different levels of FQOL in differentdomains and concepts also suggests that it couldbe a useful practical measure for service delivery.Service providers will be able to use the expertopinions expressed from within the family to iden-tify specific areas of need and then assist families toaccess the same places and resources that are avail-able within the wider community. Such research isin its infancy in Australia. Therefore, the currentresults contribute an important step in the shift toproviding appropriate services to support familiesthat have a member with an intellectual/developmental disability. FQOL research plays akey role in ensuring that people with intellectual/developmental disabilities and their families have anopportunity to describe what they need to improvetheir FQOL. Moreover, if the outcomes of theresearch are taken seriously by support serviceproviders, then they will be better placed to imple-ment programmes to support families that havea member with an intellectual/developmentaldisability more effectively.

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Accepted 8 July 2011




Documents

Family quality of life of Australian families with a member with an intellectual/developmental disability