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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

Tinneke Moyson (UGent) and Herbert Roeyers (UGent)
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Abstract
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.
Keywords
IMPACT, PARENTS, GROUP INTERVENTION, PSYCHOLOGICAL ADJUSTMENT, DOWN-SYNDROME, CHRONIC ILLNESS, CHILDHOOD, KNOWLEDGE, DISORDER, AUTISM, disability, family, quality of life, siblings, support

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MLA
Moyson, Tinneke, and Herbert Roeyers. “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.” JOURNAL OF INTELLECTUAL DISABILITY RESEARCH 56.1 (2012): 87–101. Print.
APA
Moyson, T., & Roeyers, H. (2012). 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. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 56(1), 87–101.
Chicago author-date
Moyson, Tinneke, and Herbert Roeyers. 2012. “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.” Journal of Intellectual Disability Research 56 (1): 87–101.
Chicago author-date (all authors)
Moyson, Tinneke, and Herbert Roeyers. 2012. “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.” Journal of Intellectual Disability Research 56 (1): 87–101.
Vancouver
1.
Moyson T, Roeyers H. 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. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH. 2012;56(1):87–101.
IEEE
[1]
T. Moyson and H. Roeyers, “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,” JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, vol. 56, no. 1, pp. 87–101, 2012.
@article{2055925,
  abstract     = {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.},
  author       = {Moyson, Tinneke and Roeyers, Herbert},
  issn         = {0964-2633},
  journal      = {JOURNAL OF INTELLECTUAL DISABILITY RESEARCH},
  keywords     = {IMPACT,PARENTS,GROUP INTERVENTION,PSYCHOLOGICAL ADJUSTMENT,DOWN-SYNDROME,CHRONIC ILLNESS,CHILDHOOD,KNOWLEDGE,DISORDER,AUTISM,disability,family,quality of life,siblings,support},
  language     = {eng},
  number       = {1},
  pages        = {87--101},
  title        = {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},
  url          = {http://dx.doi.org/10.1111/j.1365-2788.2011.01393.x},
  volume       = {56},
  year         = {2012},
}

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