Siblings of people with intellectual and developmental disabilities: a systematic review on their quality of life perceptions in the context of a family

被引:21
作者
Muries-Cantan, O. [1 ]
Schippers, A. [2 ]
Gine, C. [1 ]
Blom-Yoo, H. [3 ]
机构
[1] Ramon Llull Univ, Blanquerna Fac Psychol Educ & Sports Sci, Cister 34, Barcelona 08022, Spain
[2] Univ Humanist Studies, Eth Care, Utrecht, Netherlands
[3] Family Qual Life Disabil Studies Nederland, De Meern, Netherlands
关键词
siblings; quality of life; family quality of life; intellectual and developmental disability; systematic review; ADULT SIBLINGS; ADOLESCENT SIBLINGS; AUTISM; CHILDREN; EXPERIENCES; PERSPECTIVES; BROTHER; OUTCOMES; INDIVIDUALS; SISTERS;
D O I
10.1080/20473869.2022.2036919
中图分类号
G76 [特殊教育];
学科分类号
040109 ;
摘要
Background: Within Family Quality of Life (FQoL) research, perceptions of siblings of people with intellectual and developmental disabilities (IDD) in the setting of a family are limited studied. The aim of this systematic review is to find relevant information about quality of life perceptions of siblings of people with IDD. Two main questions guided this review: (1) what are the siblings' perceptions on quality of life in the context of their family? (2) what needs and challenges do siblings have regarding their quality of life as siblings of individuals with IDD? Methods: A systematic search was conducted using Scopus, PsycInfo, ERIC and Web of Science databases, involving keywords and combinations such as Intellectual and Developmental Disabilities, Family Quality of Life and siblings. Results: We identified a total of 44 articles. Analysis showed siblings' diverse perceptions of quality of life and their multiple experiences, needs, desires and concerns. Conclusions: Results contribute to knowledge about the quality of life and well-being of siblings of all ages. Suggestions for support, interventions and future research are given, such as the necessity of educating local communities regarding siblings' needs, the study of siblings' experiences in different cultural contexts or the importance of conducting research with clear theoretical frameworks and focused on the multiple components that might be influencing siblings' quality of life.
引用
收藏
页码:797 / 810
页数:14
相关论文
共 83 条
[1]  
[Anonymous], 2013, 10 QUEST HELP YOU MA
[2]  
[Anonymous], 2006, Family quality of life survey: Main caregivers of people with intellectual or developmental disabilities
[3]   Support Needs of Siblings of People with Developmental Disabilities [J].
Arnold, Catherine K. ;
Heller, Tamar ;
Kramer, John .
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, 2012, 50 (05) :373-382
[4]   Personalisation, family relationships and autism: Conceptualising the role of adult siblings [J].
Atkin, Karl ;
Tozer, Rosemary .
JOURNAL OF SOCIAL WORK, 2014, 14 (03) :225-242
[5]  
Atlas.ti Scientific Software Development GmbH, 2002, ATLASTI
[6]   Creating a Different Kind of Normal: parent and child perspectives on sibling relationships when one child in the family has autism spectrum disorder [J].
Bachraz, Vijetta ;
Grace, Rebekah .
CONTEMPORARY ISSUES IN EARLY CHILDHOOD, 2009, 10 (04) :317-330
[7]  
Benderix Ylva, 2007, J Pediatr Nurs, V22, P410, DOI 10.1016/j.pedn.2007.08.013
[8]   Sibling Roles in the Lives of Older Group Home Residents with Intellectual Disability: Working with Staff to Safeguard Wellbeing [J].
Bigby, Christine ;
Webber, Ruth ;
Bowers, Barbara .
AUSTRALIAN SOCIAL WORK, 2015, 68 (04) :453-468
[9]   Families and intellectual disability [J].
Blacher, J ;
Neece, CL ;
Paczkowski, E .
CURRENT OPINION IN PSYCHIATRY, 2005, 18 (05) :507-513
[10]   Rethinking FQoL: The Dynamic Interplay Between Individual and Family Quality of Life [J].
Boelsma, Femke ;
Caubo-Damen, Irene ;
Schippers, Alice ;
Dane, Menco ;
Abma, Tineke A. .
JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, 2017, 14 (01) :31-38