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

Ann P. Turnbull, Jean Ann Summers, Suk Hyang Lee, Kathleen Kyzar

Research output: Contribution to journalReview articlepeer-review

80 Scopus citations


The 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.

Original languageEnglish
Pages (from-to)346-356
Number of pages11
JournalMental Retardation and Developmental Disabilities Research Reviews
Issue number4
StatePublished - 2007


  • Autism
  • Developmental disabilities
  • Family adaptation
  • Family functioning
  • Family quality of life
  • Family support
  • Family well-being
  • Intellectual disability
  • Mental retardation
  • Parenting capabilities


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