'The overall quality of my life as a sibling is all right, but of course, it could always be better'. Quality of life of siblings of children with intellectual disability: the siblings' perspectives

J Intellect Disabil Res. 2012 Jan;56(1):87-101. doi: 10.1111/j.1365-2788.2011.01393.x. Epub 2011 Mar 3.


Background: The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling.

Method: As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in-depth, phenomenology-based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory.

Results: Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well-being, exchanging experiences, social support and dealing with the outside world.

Conclusions: This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience.

MeSH terms

  • Adolescent
  • Adult
  • Birth Order
  • Caregivers / psychology*
  • Child
  • Cost of Illness*
  • Disabled Children
  • Family Health*
  • Female
  • Health Surveys
  • Humans
  • Intellectual Disability / psychology*
  • Male
  • Middle Aged
  • Psychometrics / instrumentation
  • Psychometrics / methods
  • Quality of Life / psychology*
  • Siblings / psychology*
  • Social Support
  • Surveys and Questionnaires