Toward assessing family outcomes of service delivery: validation of a family quality of life survey.

BACKGROUND The concept of family quality of life (QoL) has emerged as an important outcome of service delivery for individuals with disabilities and their families. The present study describes the process of developing a tool to measure family QoL. METHODS AND RESULTS A total of 1197 respondents participated in a national field test. Through factor analysis, the survey was refined in several ways: (1) the preliminary 10-domain structure was reduced to a five-domain structure; (2) a total of 41 items were selected for the revised survey; and (3) wordings were clarified. CONCLUSIONS The implications for future research and practice are discussed.

[1]  A. Turnbull,et al.  Impacts of Poverty on Quality of Life in Families of Children with Disabilities , 2002 .

[2]  C. O'boyle Quality of Life assessment: A paradigm shift in healthcare? , 1997 .

[3]  R. Cummins,et al.  Validity Studies the Comprehensive Quality of Life Scale (Comqol): Instrument Development and Psychometric Evaluation on College Staff and Students , 1994 .

[4]  B. Harry,et al.  Culture in Special Education: Building Reciprocal Family - Professional Relationships , 1999 .

[5]  R. Schalock,et al.  Quality of life: its measurement and use. , 1989, Mental retardation.

[6]  Focus on psychometrics. More on mtmm: The role of confirmatory factor analysis , 1991 .

[7]  Chigee J. Cloninger,et al.  Quality of Life as Context for Planning and Evaluation of Services for People with Disabilities , 1993, Exceptional children.

[8]  J. Gardner,et al.  Personal outcomes as measures of quality. , 1997, Mental Retardation.

[9]  M. Powers,et al.  Quality of life index: development and psychometric properties , 1985, ANS. Advances in nursing science.

[10]  D. Behl,et al.  Family-Level Service Coordination Within Home Visiting Programs , 1996 .

[11]  A. Halpern Quality of Life as a Conceptual Framework for Evaluating Transition Outcomes , 1993 .

[12]  C. Upshur Mothers' and Fathers' Ratings of the Benefits of Early Intervention Services , 1991 .

[13]  D. Felce,et al.  Defining and applying the concept of quality of life. , 1997, Journal of intellectual disability research : JIDR.

[14]  S. Ferketich,et al.  Focus on psychometrics. Aggregating family data. , 1992, Research in nursing & health.

[15]  G. Mahoney,et al.  How Responsive Is Early Intervention to the Priorities and Needs of Families? , 1996 .

[16]  D. Carnine Bridging the Research-to-Practice Gap , 1997 .

[17]  A. Lehman,et al.  A Quality of Life Interview for the chronically mentally ill. , 1988 .

[18]  A. Turnbull,et al.  Family quality of life: a qualitative inquiry. , 2003, Mental retardation.

[19]  D. Carran,et al.  Measuring quality of life and quality of services through personal outcome measures: Implications for public policy , 2001 .

[20]  P. Vadasy,et al.  Measurement Issues in Studies of Efficacy , 1987 .

[21]  Matthew Taylor,et al.  Mothers' and Fathers' Perceptions of Family Functioning in Families Having Children With Disabilities , 1994 .

[22]  C. Royeen,et al.  The Impact of Culture and Socioeconomic Status on Family-Professional Collaboration: Challenges and Solutions , 1994 .

[23]  D. Bailey,et al.  Family Outcomes in Early Intervention: A Framework for Program Evaluation and Efficacy Research , 1998 .

[24]  Barbara J. Friesen,et al.  Participatory Action Research as a Model for Conducting Family Research , 1998 .

[25]  B. O'Connor Challenges of Interagency Collaboration , 1995 .

[26]  L. Fisher,et al.  Alternative strategies for creating "relational" family data. , 1985, Family process.

[27]  Laurie A. Dinnebeil,et al.  A Qualitative Analysis of Parents' and Service Coordinators' Descriptions of Variables That Influence Collaborative Relationships , 1996 .

[28]  Lisbeth J. Vincent Families and Early Intervention: Diversity and Competence. , 1992 .

[29]  T. R. Knapp,et al.  Focus on psychometrics. The multitraitmultimethod approach to construct validity , 1991 .

[30]  M. C. Maguire Treating the Dyad as the Unit of Analysis: A Primer on Three Analytic Approaches , 1999 .

[31]  Lisbeth J. Vincent Families and Early Intervention , 1992 .

[32]  M. Guralnick Mothers' Perceptions of the Benefits and Drawbacks of Early Childhood Mainstreaming , 1994 .

[33]  Trina W. Osher M.A. Outcomes and accountability from a family perspective , 2005, Journal of Behavioral Health Services & Research.

[34]  J. Umbreit,et al.  The Effects of Family-Centered Service Coordination , 1998 .

[35]  C. Hatton Whose quality of life is it anyway? Some problems with the emerging quality of life consensus. , 1998, Mental retardation.

[36]  O. CiaranA. Quality of Life assessment: A paradigm shift in healthcare? , 1997 .

[37]  Stacey J. Hoffman,et al.  Applying the Participatory Action Research Model to the Study of Social Inclusion at Worksites , 1998 .

[38]  Deborah W. Hamby,et al.  Family-Oriented Early Intervention Policies and Practices: Family-Centered or Not? , 1991, Exceptional children.

[39]  D. Bailey,et al.  Family Goals in Infant Intervention: Analysis and Issues , 1990 .

[40]  T. Osher Outcomes and accountability from a family perspective , 1998, The journal of behavioral health services & research.

[41]  T. Lovitt,et al.  The Gap: Research into Practice , 1996 .

[42]  Luanna H. Meyer,et al.  Participatory Research: New Approaches to the Research to Practice Dilemma , 1998 .

[43]  A. Turnbull,et al.  Cross-cultural competency and special education: Perceptions and experiences of Korean parents of children with special needs. , 2001 .

[44]  P. Sample Beginnings: Participatory action research and adults with developmental disabilities , 1996 .

[45]  F. Norris,et al.  Quality of life as the criterion for need assessment and community psychology. , 1983, Journal of community psychology.

[46]  L. Fox,et al.  Parent-Professional Partnership in Behavioral Support: A Case Study of Community-Based Intervention , 1997 .

[47]  D. Ainge A Comparison of Couples' Views on Caring for Their Child with Intellectual Disability. , 1995 .