Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities

Wiley - Tập 13 Số 4 - Trang 346-356 - 2007
Ann P. Turnbull1, Jean Ann Summers2, Jimin Lee2, Kathleen Kyzar2
1Beach Center on Disability, University of Kansas, Lawrence, KA 66045, USA.
2Beach Center on Disability, University of Kansas, Lawrence, Kansas

Tóm tắt

AbstractThe purpose of this review is to (a) document the current status of conceptualizing and measuring family outcomes related to having a member with an intellectual disability and (b) determine the extent to which family research focuses on internal family characteristics as contrasted to external family support. The reviewers collected 28 articles using the terms well‐being, adaptation, family functioning, or family quality of life in the title. Results of our analyses are presented as a comparison between well‐being, adaptation, and family functioning articles in one group and family quality of life articles in a second group. Both groups lacked explicit conceptual definitions, theory, and random/representative samples. The articles placed an undue emphasis on maternal participation, and tended to report a single family member score as representative of the whole family. Two major differences between the groups was a tendency for family quality of life studies to be grounded in conceptual frameworks and focus on new instrument development. Recommendations for future research directions are included. © 2007 Wiley‐Liss, Inc. MRDD Research Reviews 2007;13:346–356.

Từ khóa


Tài liệu tham khảo

Abidin RR, 1990, Parenting stress index

10.2307/352429

10.1177/1043659606291550

10.1111/j.1365-2788.2005.00752.x

10.1177/105381510602800401

10.1177/001440299806400302

10.2511/rpsd.30.4.194

Bronfenbrenner U, 1979, The ecology of human development: experiments by nature and design, 10.4159/9780674028845

10.1111/j.1741-1130.2006.00085.x

10.1023/A:1024931022773

10.1177/027112140002000404

10.1111/j.1468-3148.2006.00318.x

10.1111/j.1365-2788.2006.00913.x

10.1111/j.1365-2788.2006.00900.x

10.1111/j.1741-1130.2006.00084.x

Essex EL, 1999, Differences in coping effectiveness and well‐being among aging mothers and fathers of adults with mental retardation, Am J Mental Retard, 104, 545, 10.1352/0895-8017(1999)104<0545:DICEAW>2.0.CO;2

10.1111/j.1365-2788.2006.00929.x

10.1352/0895-8017(2006)111[48:MDAEEC]2.0.CO;2

10.1352/0895-8017(2002)107<0116:PPIFOC>2.0.CO;2

10.1352/0047-6765(1998)036<0457:MPOLNT>2.0.CO;2

10.1111/j.1365-2788.2006.00904.x

10.1111/j.1741-3737.2006.00314.x

10.1111/j.1365-2788.2006.00906.x

Krauss MW, 1997, The effectiveness of early intervention, 611

10.1111/j.1365-2788.2006.00907.x

Luckasson R, 1992, Mental retardation: definition, classification, and systems of supports

Lustig DC, 1999, Adaptation in families with adult children with mental retardation: impact of family strengths and appraisal, Education Train Mental Retard Develop Disabil, 34, 260

10.1352/0895-8017(2006)111[250:HCOAWM]2.0.CO;2

McCubbin MA, 1993, Families, health and illness: perspectives of coping and intervention, 21

McCubbin HI, 1996, Family assessment: resiliency, coping and adaptation—inventories for research and practice, 455

McCubbin HL, 1983, Social stress and the family: advances and development in family stress theory and research, 7

McCubbin HI, 1983, FILE: family inventory file events and changes

10.1177/027112149801800404

10.1111/j.1365-2788.2006.00930.x

10.1046/j.1365-2788.2003.00497.x

10.1126/science.146.3642.347

10.1352/0047-6765(2003)41<313:FQOLAQ>2.0.CO;2

10.1177/014662167700100306

Raghavan C, 1999, The adaptive project of parenting: south Asian families with children with developmental delays, Education Train Mental Retard Develop Disabil, 34, 281

10.1177/105381519902200207

Santelli B, 2001, The evolution of an unlikely partnership between researcher and culturally diverse families: lessons learned, TASH Newslett, 21

10.1352/0047-6765(2002)040<0457:CMAAOQ>2.0.CO;2

10.1111/j.1741-1130.2004.04028.x

10.4135/9781412990110

Singer GHS, 1996, Redefining family support: Innovations in public‐private partnerships, 3

10.1080/10349120701488848

10.1177/001440290507100204

10.1177/027112149901900308

10.2511/rpsd.23.3.178

Turnbull AP, 1993, Cognitive coping, families, and disability

Turnbull AP, Family supports and services in early intervention: a bold vision, J Early Intervention

Turnbull HR, 2006, The individuals with disabilities education act as amended in 2004

10.1606/1044-3894.87

10.1177/107484070000600305

10.1111/j.1365-2788.2005.00754.x

10.1111/j.1365-2788.2006.00932.x

10.2511/rpsd.29.2.82

10.1207/s15566935eed1104_8

10.1097/00004703-199902000-00002