BEACH CENTER FAMILY QUALITY OF LIFE SCALE The Beach Center Family Quality of Life Scale (hereafter referred

to as FQOL Scale) assesses families perceptions of their satisfaction with different aspects of family quality of life The focus of our ori!inal de"elopment of the FQOL Scale was on families of children with disa#ilities a!es #irth throu!h $% &e are currently studyin! its application to families of children without disa#ilities and families of adults with disa#ilities General Description The FQOL Scale contains fi"e su#scales' Family (nteraction) *arentin!) +motional &ell, #ein!) *hysical - .aterial &ell,#ein!) and /isa#ility,0elated Support This scale is desi!ned to #e used as a research tool Some e1amples of potential uses of the scale include'

2s a pre, and post,test to measure the effecti"eness of an inter"ention 2s an outcome measure for pro!rams or ser"ices 2s a measure of a dependent or independent "aria#le

The FQOL Scale is not to #e used to determine or deny eli!i#ility for ser"ices nor is it a clinical measure for dia!nostic purposes How It Was Developed The initial framewor3 for scale de"elopment resulted from e1tensi"e literature re"iews) focus !roups) and indi"idual inter"iews with family mem#ers of children with disa#ilities) indi"iduals with disa#ilities) ser"ice pro"iders) and administrators of ser"ice a!encies These representati"es were as3ed to descri#e thin!s that were 4important for families to ha"e a !ood life to!ether 5 The research team then analy6ed the transcripts to put to!ether all comments in similar !roups or cate!ories These) in turn) were !rouped in ten domains of family quality of life' Family Interaction, Parenting, Daily Life, Financial Well-Being, Emotional WellBeing, Social Well-Being, Health, Physical Environment, Advocacy, and Prod ctivity! (see a detailed description of this sta!e of de"elopment in *oston) Turn#ull) *ar3) .annan) .arquis) 7 &an!) $889) :e1t) we de"eloped a pilot "ersion of the FQOL Scale containin! %%$ items) which was administered to a sample of %%;< indi"iduals from =>; families 2n e1ploratory factor analysis produced a >,factor solution' Family Interaction, Parenting, "eneral #eso rces, Health and Safety, and S $$ort for Persons %ith Disa&ilities (see details in *ar3 et al ) $889) Further "alidation of the factor structure of the FQOL Scale occurred in two rounds of study in"ol"in! a total of =?? families The final FQOL Scale was refined throu!h

confirmatory factor analyses into $> items that assess > domains' Family Interaction, Parenting, Emotional Well-&eing, Physical'(aterial Well-&eing, and Disa&ility-#elated S $$ort Psychometric Properties For a detailed description of the psychometric e"aluation of the FQOL Scale) see @offman) .arquis) *oston) Summers) and Turn#ull) $88A @ere is a #rief summary of the findin!s reported in that article' #elia&ility) Cron#achs alpha for the FQOL su#scales on (mportance ratin!s was ;= and on Satisfaction ratin!s was ?? Test,retest relia#ility was e1amined in #oth importance and satisfaction responses for each of the FQOL su#scales 2ll correlations were si!nificant at the 8% le"el or #eyond (df from >; to A9) For importance) the correlations #etween time points were >= for Family (nteraction) AA for *arentin!) <8 for +motional &ell,#ein!) =$ for *hysical .aterial &ell,#ein!) and << for /isa#ility,0elated Support For satisfaction) the correlations #etween time points were <> for Family (nteraction) <% for *arentin!) <A for +motional &ell,#ein!) << for *hysical .aterial &ell,#ein!) and A8 for /isa#ility,0elated Support

*alidity) Both item,le"el o"erall FQOL structure (a second,order factor of FQOL) measured #y > factors) which were in turn measured #y their items as o#ser"ed "aria#les) and su#scale,le"el FQOL structure (a first,order factor of FQOL) measured #y the > su#scale item means as o#ser"ed "aria#les) were e1amined The item,le"el o"erall FQOL importance model had accepta#le fit) B ($<8) C A%< $?) p D 88%) CF( C ?<) 0.S+2 C 8< The su#scale,le"el FQOL model had e1cellent fit) B(>) C 9 =%) pC A9) CF( C % 88) 0.S+2 C 88 The con"er!ent "alidity was tested #etween the FQOL su#scales and rele"ant e1istin! measures The Family 2*E20 (Smil3stein) 2shworth) 7 .ontano) %;?$)) a >,item measure of family functionin!) was si!nificantly correlated with the satisfaction mean for the Family (nteraction FQOL su#scale) r (?<) C A?) p D 88% The Family 0esource Scale (/unst 7 Leet) %;?<)) a 98,item measure of family resources) was si!nificantly correlated with the > items on the *hysical-.aterial &ell,Bein! domain) r C A8) p D 88%) n C A8

Family Quality of Life Scale - Scorin ! Items

The FQOL Scale uses satisfaction as the primary response format The anchors of the items rated on satisfaction are rated on a >,point scale) where % C very dissatisfied) 9 C neither satisfied nor dissatisfied) and > C very satisfied Items There are $> items in the final FQOL scale Below are the items 3eyed to each of the first su#,scales domains' Family (nteraction'

.y family enFoys spendin! time to!ether .y family mem#ers tal3 openly with each other .y family sol"es pro#lems to!ether .y family mem#ers support each other to accomplish !oals .y family mem#ers show that they lo"e and care for each other .y family is a#le to handle lifeGs ups and downs

*arentin!'

Family mem#ers help the children learn to #e independent Family mem#ers help the children with schoolwor3 and acti"ities Family mem#ers teach the children how to !et alon! with others 2dults in my family teach the children to ma3e !ood decisions 2dults in my family 3now other people in the childrenGs li"es (i e friends) teachers) 2dults in my family ha"e time to ta3e care of the indi"idual needs of e"ery child

+motional &ell,#ein!'

.y family has the support we need to relie"e stress .y family mem#ers ha"e friends or others who pro"ide support .y family mem#ers ha"e some time to pursue their own interests .y family has outside help a"aila#le to us to ta3e care of special needs of all family mem#ers

*hysical - .aterial &ell,#ein!'

.y family mem#ers ha"e transportation to !et to the places they need to #e .y family !ets dental care when needed .y family !ets medical care when needed .y family has a way to ta3e care of our e1penses .y family feels safe at home) wor3) school) and in our nei!h#orhood

/isa#ility,0elated Support

.y family mem#er with special needs has support to ma3e pro!ress at school or wor3place .y family mem#er with special needs has support to ma3e pro!ress at home .y family mem#er with special needs has support to ma3e friends .y family has a !ood relationship with the ser"ice pro"iders who wor3 with our family mem#er with a disa#ility

The FQOL Scale is a"aila#le free of char!e To order) email #eachH3u edu Cited 0eferences *oston) / ) Turn#ull) 2 ) *ar3) I ) .annan) @ ) .arquis) I ) 7 &an!) . ($889) Family quality of life outcomes' 2 qualitati"e inquiry launchin! a lon!,term research pro!ram (ental #etardation, +,(>)) 9%9,9$? *ar3) I ) @offman) L ) .arquis) I ) Turn#ull) 2 * ) *oston) / ) .annan) @ ) &an!) . ) 7 :elson) L ($889) Toward assessin! family outcomes of ser"ice deli"ery' Jalidation of a family quality of life sur"ey -o rnal of Intellect al Disa&ility #esearch, +.(=->)) 9A<,9?= @offman) L ) .arquis) I E ) *oston) / I ) Summers) I 2 ) 7 Turn#ull) 2 ($88A) 2ssessin! family outcomes' *sychometric e"aluation of the family quality of life scale -o rnal of (arriage and Family, /0) %8A;,%8?9 2dditional 0eferences Summers) I 2 ) .arquis) I ) .annan) @ ) Turn#ull) 2 * ) Flemin!) K ) *oston) / I ) &an!) . ) 7 Kup6c3) K (su#mitted) 0elationship of percei"ed adequacy of ser"ices) family,professional partnerships) and family quality of life in early childhood ser"ice pro!rams International -o rnal of Develo$ment, Disa&ility, and Ed cation! Summers) I 2 ) *oston) / I ) Turn#ull) 2 * ) .arquis) I ) @offman) L ) .annan) @ ) 7 &an!) @ ($88>) Conceptuali6in! and measurin! family quality of life -o rnal of Intellect al Disa&ility #esearch, +1(%8)) <<<,<?9 Turn#ull) 2 * ($88=) *residents address $88=' 4&earin! two hats5' .orphed perspecti"es on family quality of life (ental #etardation, +2(>)) 9?9,9;; &an!) . ) .annan) @ ) *oston) I ) Turn#ull) 2 * ) 7 Summers) I 2 ($88=) *arents perceptions of ad"ocacy acti"ities and their impact on family quality of life #esearch 3 Practice for Persons %ith Severe Disa&ilities, 21($)) %==,%>>

&an!) . ) Summers) I 2 ) Little) T ) Turn#ull) 2 ) *oston) / ) 7 .annan) @ ($88A) *erspecti"es of fathers and mothers of children in early inter"ention pro!rammes in assessin! family quality of life -o rnal of Intellect al Disa&ility #esearch, 45(%$)) ;<<,;?? &an!) . Turn#ull) 2 * ) Summers) I 2 ) Little) T / ) *oston) / I ) .annan) @ ) 7 Turn#ull) 0 ($88=) Se"erity of disa#ility and income as predictors of parents satisfaction with their family quality of life durin! early childhood years #esearch 3 Practice for Persons %ith Severe Disa&ilities, 21($)) ?$,;=

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