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Enhancing the Quality of Life of People with Intellectual Disabilities pp 305–348Cite as

A Comparison of Two Family Quality of Life Measures: An Australian Study

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Part of the book series: Social Indicators Research Series ((SINS,volume 41))

Abstract

Family Quality of Life (FQOL) research partly stemmed from government policies in the 1970s promoting deinstitutionalization, resulting in increasing numbers of families becoming responsible for the primary care and support of their relative with an intellectual disability. Research has indicated that families have not necessarily been prepared for the duration and intensity of this care, leading to added demands on disability services to provide such families with support. Consequently, there has grown a need to evaluate FQOL. This chapter describes two internationally developed FQOL survey measures; the Beach Center Family Quality of Life Scale (Beach Center on Disability, 2003) and the international Family Quality of Life Survey: Main caregivers of people with intellectual disabilities (I. Brown et al., 2006), and discusses their concurrent use within Australia. Both surveys made use of similar FQOL domains associated with Emotional, Material, and Physical Well-Being; Family Relationships; and Disability Services, but there are also some differences throughout the scales. While both surveys resulted in relatively comprehensive FQOL data, some components relevant to FQOL were included in one survey but not the other, such as “Transportation,” “Parenting,” and “Influence of Values.” In addition, while both surveys used the measurement concepts Importance and Satisfaction, the International Survey also measured Opportunities, Initiative, Attainment, and Stability. The evaluation of these two instruments carried out in the present study supports the importance of measuring FQOL using mixed-methods in an interview format where possible, and it also provides suggestions for how these measures could be improved to better identify what makes up a life of quality for these families as well as the support needed to improve the QOL of families who have a member with a intellectual disability.

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Notes

  1. 1.

    For some of the data collected in the present study, The Beach Center Partnership and Family Quality of Life Survey was used, which included a preliminary section on Support and Services (disability-related or otherwise). For the purpose of this chapter, only FQOL data are presented. Results from Partnership and Support Services sections of the survey are relevant for other analyses.

References

  • ABS. (2001, 21 June 2007). Australian Bureau of Statistics 2001 Census QuickStats: Australia. Retrieved 6th May 2008, from http://www.censusdata.abs.gov.au/ABSNavigation/prenav/ViewData?action=402&documentproductno=0&documenttype=Main%20Features&order=1&tabname=Summary&areacode=0&issue=2001&producttype=QuickStats&javascript=true&textversion=false&navmapdisplayed=true&breadcrumb=PLD&&collection=Census&period=2001&producttype=QuickStats&method=Location%20on%20Census%20Night&

  • ABS. (2006, 1 August 2008). Australian Bureau of Statistics 2006 Census QuickStats: Australia. Retrieved 6th May, 2008, from http://www.censusdata.abs.gov.au/ABSNavigation/prenav/ViewData?action=402&documentproductno=0&documenttype=Main%20Features&order=1&tabname=Summary&areacode=0&issue=2006&producttype=QuickStats&javascript=true&textversion=false&navmapdisplayed=true&breadcrumb=LPD&&collection=Census&period=2006&producttype=QuickStats&method=Place%20of%20Usual%20Residence&

  • Aznar, A. S., & Castanon, D. G. (2005). Quality of life from the point of view of Latin American families: A participative research study. Journal of Intellectual Disability Research, 49(10), 784–788.

    Article  Google Scholar 

  • Bailey, D. B., McWilliam, R. A., Darkes, L. A., Hebbeler, K., Simeonsson, R. J., Spiker, D., et al. (1998). Family outcomes in early intervention: A framework for program evaluation and efficacy research. Exceptional Children, 64(3), 313–328.

    Google Scholar 

  • Beach Center on Disability. (2003). The Beach Center Family Quality of Life Scale (Survey). Kansas: Beach Center, The University of Kansas, in partnership with families, service providers, and researchers.

    Google Scholar 

  • Blacher, J. (2001). Transition to adulthood: Mental retardation, families, and culture. American Journal on Mental Retardation, 106(2), 173–188.

    Article  Google Scholar 

  • Brown, I., Anand, S., Fung, W. L. A., Isaacs, B. J., & Baum, N. T. (2003). Family quality of life: Canadian results from an international study. Journal of developmental and physical disabilities, 15(3), 207–230.

    Article  Google Scholar 

  • Brown, I., Brown, R., Cummins, R. A., Felce, D., Mattika, L., Keith, K., et al. (2000). Quality of Life: Its conceptualization, measurement, and application (A Consensus Document). Hastings, Nebraska: International Association for the Scientific Study of Intellectual Disabilities – Special Interest Research Group on Quality of Life (IASSID SIRG-QOL).

    Google Scholar 

  • Brown, I., & Brown, R. I. (2004). Family quality of life as an area of study. In A. P. Turnbull, I. Brown, & H. R. Turnbull (Eds.), Families and People with Mental Retardation and Quality of Life: International perspectives (pp. 3–10). Washington: American Association on Mental Retardation (AAMR).

    Google Scholar 

  • Brown, I., Brown, R. I., Baum, N. T., Isaacs, B. J., Myerscough, T., Neikrug, S., et al. (2006). Family Quality of Life Survey: Main caregivers of people with intellectual disabilities. Toronto, ON, Canada: Surrey Place Centre.

    Google Scholar 

  • Brown, I., Isaacs, B. J., McCormack, B., Baum, N. T., & Renwick, R. (2004). Family quality of life in Canada. In A. P. Turnbull, I. Brown, & H. R. Turnbull (Eds.), Families and People with Mental Retardation and Quality of Life: International perspectives (pp. 183–220). Washington, DC: American Association on Mental Retardation (AAMR).

    Google Scholar 

  • Brown, I., Neikrug, S., & Brown, R. I. (2000). Family Quality of Life Survey, International Family Quality of Life Project: Australia, Canada, Israel.

    Google Scholar 

  • Brown, R. I. (Ed.). (1988). Quality of Life for Handicapped People. New York: Croom Helm.

    Google Scholar 

  • Brown, R. I., & Brown, I. (2006). Family Quality of Life Across Countries – Future Directions. Paper presented at the E-IASSID Conference; Quality of Life Special Interest Research Group (QOL – SIRG), Maastricht, The Netherlands.

    Google Scholar 

  • Brown, R. I., Davey, R., Shearer, J., & Kyrkou, M. (2004). Family quality of life in Australia. In A. P. Turnbull, I. Brown, & H. R. Turnbull (Eds.), Families and People with Mental Retardation and Quality of Life: International Perspectives (pp. 221–260). Washington, DC: American Association on Mental Retardation (AAMR).

    Google Scholar 

  • Browne, G., & Bramston, P. (1996). Quality of life in the families of young people with intellectual disabilities. Australian and New Zealand Journal of Mental Health Nursing, 5(3), 120–130.

    Google Scholar 

  • Cummins, R. A. (1991). The comprehensive quality of life scale – intellectual disability: An initial report. Australia and New Zealand Journal of Developmental Disabilities, 17(2), 259–264.

    Google Scholar 

  • Cummins, R. A. (2003). Normative life satisfaction: Measurement issues and a homeostatic model. Social Indicators Research, 64(2), 225–256.

    Article  Google Scholar 

  • Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706.

    Article  Google Scholar 

  • Cummins, R. A. (2007, May 2007). Australian Centre on Quality of Life. Retrieved February 27, 2008, from http://www.deakin.edu.au/research/acqol/index.htm

  • Cummins, R. A., Eckersley, R., Pallant, J., Van Vugt, J., & Miasjon, R. (2003, November). Developing a national index of subjective wellbeing: the Australian unity wellbeing index. Social Indicators Research, 64(2), 159–190.

    Article  Google Scholar 

  • Davis, K., & Gavidia-Payne, S. (2009). The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34(2), 153–162.

    Article  Google Scholar 

  • Dennis, R. E., Williams, W., Giangreco, M. F., & Cloninger, C. J. (1993). Quality of life as context for planning and evaluation of services for people with disabilities. Exceptional Children, 59(6), 499–512.

    Google Scholar 

  • Devi, S. (2006). E-IASSID Conference; Quality of Life Special Interest Research Group (QOL – SIRG). Discussion about FQOL survey. Maastricht, The Netherlands.

    Google Scholar 

  • Eacott, B. (2002). Family quality of life for families who have a child, or children with an intellectual disability between the ages of twelve and sixteen. Unpublished Masters of Special Education, Flinders University of South Australia, Adelaide.

    Google Scholar 

  • Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research, 49(9), 657–671.

    Article  Google Scholar 

  • Esbensen, A. J., & Benson, B. A. (2006). A prospective analysis of life events, problem behaviours and depression in adults with intellectual disability. Journal of Intellectual Disability Research, 50(4), 248–258.

    Article  Google Scholar 

  • Glidden, L. M., & Jobe, B. M. (2007). Measuring parental daily rewards and worries in the transition to adulthood. American Journal on Mental Retardation, 112(4), 275–288.

    Article  Google Scholar 

  • Goode, D. (Ed.). (1994). Quality of life for persons with disabilities: International perspectives and issues. Cambridge, MA: Brookline Books.

    Google Scholar 

  • Hodapp, R. M., Glidden, L. M., & Kaiser, A. P. (2005). Siblings of persons with disabilities: Toward a research agenda. Mental Retardation, 43(5), 334–338.

    Google Scholar 

  • Hoffman, L., Marquis, J. G., Poston, D. J., Summers, J. A., & Turnbull, A. P. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of marriage and family, 68(4), 1069–1083.

    Article  Google Scholar 

  • Isaacs, B. J., Brown, I., Brown, R. I., Baum, N. T., Myerscough, T., Neikrug, S., et al. (2007). The International Family Quality of Life Project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4(3), 177–185.

    Article  Google Scholar 

  • Jokinen, N. S., & Brown, R. I. (2005). Family quality of life from the perspective of older parents. Journal of Intellectual Disability Research, 49(10), 789–793.

    Article  Google Scholar 

  • Kristine Peters Project Management Pty Ltd. (1998). Review of the Family Support Services System Family Survey Results (Review). Adelaide: Intellectual Disability Services Council (IDSC.

    Google Scholar 

  • Llewellyn, G. (2004, 7 May). Family Support and Services Project. Retrieved February 26, 2008, from http://www3.fhs.usyd.edu.au/fssp/

  • Llewellyn, G., Dunn, P., Fante, M., Turnbull, L., & Grace, R. (1999). Family factors influencing out-of-home placement decisions. Journal of Intellectual Disability Research, 43(3), 219–233.

    Article  Google Scholar 

  • Llewellyn, G., Gething, L., Kendig, H., & Cant, R. (2003). Invisible Carers: Facing an Uncertain Future (Report of a study conducted with funding from the National Health and Medical Research Council, 2000–2002). Sydney: University of Sydney.

    Google Scholar 

  • Llewellyn, G., Thompson, K., Whybrow, S., McConnell, D., Bratel, J., Coles, D., et al. (2003). Supporting Families: Family Well-being and Children with Disabilities (An ARC SPIRT collaborative research project). Sydney: University of Sydney in collaboration with the Spastic Centre of NSW.

    Google Scholar 

  • Mackey, S., & Goddard, L. D. (2006). The experience of health and wellness in mothers of young children with intellectual disabilities. Journal of Intellectual Disabilities, 10(4), 305–315.

    Article  Google Scholar 

  • Mackey, S., & Goddard, L. D. (2007). The Experience of Health and Wellness in Mothers of Children with Intellectual Disabilities and a Health Mentoring Intervention to improve their Health and the Health of their Families. Paper presented at the Global Policy Summit on the Well-being of People with Intellectual Disabilities, Shanghai, China.

    Google Scholar 

  • Mactavish, J. B., & Schleien, S. J. (2004). Re-injecting spontaneity and balance in family life: Parents’ perspectives on recreation in families that include children with developmental disability. Journal of Intellectual Disability Research, 48(2), 123–141.

    Article  Google Scholar 

  • McVilly. (2007a). Beach Center on Disability Summary of International Family Quality of Life Research: Keith McVilly, International Society for Quality of Life Studies (ISQOLS); QOL SIRG. San Diego Conference.

    Google Scholar 

  • McVilly. (2007b). FQOL Australia (subject of email communication). Australia: Rillotta, F.

    Google Scholar 

  • Neikrug, S. M., Judes, J., Roth, D., & Krauss, B. (2004). Family quality of life in Israel. In A. P. Turnbull, I. Brown, & H. R. Turnbull (Eds.), Families and People with Mental Retardation and Quality of Life: International Perspectives. Washington, DC: American Association on Mental Retardation (AAMR).

    Google Scholar 

  • Nuehring, M. L., & Sitlington, P. L. (2003). Transition as a vehicle: Moving from high school to an adult vocational service provider. Journal of Disability Policy Studies, 14(1), 23–35.

    Article  Google Scholar 

  • Owen, L., Gordon, M., Frederico, M., & Cooper, B. (2002). “ Listen To Us” – Supporting Families with Children with Disabilities: Identifying Service Responses that Impact on the Risk of Family Breakdown (Executive Summary of The Family Resilience Project). Victoria: School of Social Work and Social Policy – La Trobe University.

    Google Scholar 

  • Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., et al. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47(4/5), 367–384.

    Article  Google Scholar 

  • Poston, D. (2006). Family Quality of Life: What We Have Learned Five Years Into a New Field of Study. Paper presented at the E-IASSID Conference, Maastricht, The Netherlands.

    Google Scholar 

  • Poston, D., Turnbull, A. P., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41(5), 313–328.

    Article  Google Scholar 

  • Rapanaro, C., Bartu, A., & Lee, A. H. (2008). Perceived benefits and negative impact of challenges encountered in caring for young adults with intellectual disabilities in the transition to adulthood. Journal of Applied Research in Intellectual Disabilities, 21(1), 34–47.

    Google Scholar 

  • Rapley, M. (2003). Quality of Life Research: A critical introduction. London: SAGE Publications.

    Google Scholar 

  • Schalock, R. (2004a). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203–216.

    Article  Google Scholar 

  • Schalock, R. (2004b). Moving from individual to family quality of life as a research topic. In A. P. Turnbull, I. Brown, & H. R. Turnbull (Eds.), Families and People with Mental Retardation and Quality of Life: International perspectives (pp. 11–24). Washington, DC: American Association on Mental Retardation (AAMR).

    Google Scholar 

  • Schalock, R. (2007, 6 December). The development of concepts for new directions and challenges for quality of life. Paper presented at the Quality of Life Special Interest Research Group Round Table, San Diego, USA.

    Google Scholar 

  • Schneider, J., Wedgewood, N., Llewellyn, G., & McConnell, D. (2006). Families challenged by and accommodating to the adolescent years. Journal of Intellectual Disability Research, 50(12), 926–936.

    Article  Google Scholar 

  • Seltzer, M. M., Greenberg, J. S., Krauss, M. W., Gordon, R. M., & Judge, K. (1997). Siblings of adults with mental retardation or mental illness: Effects on lifestyle and psychological well-being. Family Relations, 46(4), 395–405.

    Article  Google Scholar 

  • Seltzer, M. M., & Krauss, M. W. (2001). Quality of life of adults with mental retardation/developmental disabilities who live with family. Mental Retardation and Developmental Disabilities Research Reviews, 7(2), 105–114.

    Article  Google Scholar 

  • Shearer, J. (2000). Aspects of the quality of life of children with a disability who are in inclusive educational settings. Unpublished Master’s Thesis, Flinders University of South Australia, Adelaide.

    Google Scholar 

  • Strohm, K. (2002). Siblings: Brothers and sisters of children with special needs. Adelaide: Wakefield Press.

    Google Scholar 

  • Summers, J. A., Marquis, J., Mannan, H., Turnbull, A. P., Fleming, K., Poston, D., et al. (2007). Relationship of perceived adequacy of services, family-professional partnerships, and family quality of life in early childhood service programmes. International Journal of Disability, Development & Education, 54(3), 319–338.

    Article  Google Scholar 

  • Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J., Hoffman, L., Mannan, H., et al. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49(10), 777–783.

    Article  Google Scholar 

  • Turnbull, A. P., Brown, I., & Turnbull, H. R. (Eds.). (2004). Families and People with Mental Retardation and Quality of Life: International perspectives. Washington, DC: American Association on Mental Retardation (AAMR).

    Google Scholar 

  • Verdugo, M. A., Córdoba, L., & Gómez, J. (2005). Spanish adaptation and validation of the Family Quality of Life Survey. Journal of Intellectual Disability Research, 49(10), 794–798.

    Article  Google Scholar 

  • Wang, M., Summers, J. A., Little, T. D., Turnbull, A. P., Poston, D., & Mannan, H. (2006). Perspectives of fathers and mothers of children in early intervention programmes in assessing family quality of life. Journal of Intellectual Disability Research, 50(12), 977–988.

    Article  Google Scholar 

  • Wang, M., Turnbull, A. P., Summers, J. A., Little, T. D., Poston, D., Mannan, H., et al. (2004). Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years. Research and Practice for Persons with Severe Disabilities, 29(2), 82–94.

    Article  Google Scholar 

  • Williams, B., Sawyer, S. C., & Wahlstrom, C. M. (2005). Marriages, Families & Intimate Relationships: A Practical Introduction. Boston, MA: Pearson.

    Google Scholar 

  • Zuna, N., Beach Center on Disability, & Hu, X. (2007). Beach Center Family Quality of Life Studies: What we know – and what we don’t know (Research Summary). Kansas: The University of Kansas.

    Google Scholar 

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Authors and Affiliations

  1. School of Psychology, The University of Adelaide, Adelaide, SA, Australia

    Fiona Rillotta & Neil Kirby

  2. Flinders University, Adelaide, South Australia, Australia

    Joanne Shearer

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  1. Fiona Rillotta
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Correspondence to Fiona Rillotta .

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  1. , Department of Accounting and Finance, Monash University, PO Box 197, Caulfield East, 3145, Victoria, Australia

    Ralph Kober

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Rillotta, F., Kirby, N., Shearer, J. (2010). A Comparison of Two Family Quality of Life Measures: An Australian Study. In: Kober, R. (eds) Enhancing the Quality of Life of People with Intellectual Disabilities. Social Indicators Research Series, vol 41. Springer, Dordrecht. https://doi.org/10.1007/978-90-481-9650-0_17

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