TY - JOUR
T1 - Down syndrome or Rett syndrome in the family
T2 - Parental reflections on sibling experience
AU - Gray, Caitlin
AU - Leonard, Helen
AU - Wong, Kingsley
AU - Reed, Sally
AU - Schmidt, Kate
AU - Skoss, Rachel
AU - Li, Jianghong
AU - Salt, Alison
AU - Bourke, Jenny
AU - Glasson, Emma J.
N1 - Publisher Copyright:
© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
PY - 2024
Y1 - 2024
N2 - Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability. Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability of parental time. Qualitative responses were analysed using thematic analysis. Results: Positive personality traits, an optimistic outlook, enhanced skills, and rich relationships were strong and consistent parental perceptions for siblings in both disability groups. Parents of children with Rett syndrome were more likely to rank themselves lower on time availability, and to report sibling difficulties with social engagement and family holidays. Conclusions: Parental responses appeared to be influenced by disability type, and reflective of child capabilities. Perceptions of sibling experience should be supplemented by data collected directly from siblings to fully understand their unique perspective, and the ways in which their experiences could be enhanced.
AB - Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability. Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability of parental time. Qualitative responses were analysed using thematic analysis. Results: Positive personality traits, an optimistic outlook, enhanced skills, and rich relationships were strong and consistent parental perceptions for siblings in both disability groups. Parents of children with Rett syndrome were more likely to rank themselves lower on time availability, and to report sibling difficulties with social engagement and family holidays. Conclusions: Parental responses appeared to be influenced by disability type, and reflective of child capabilities. Perceptions of sibling experience should be supplemented by data collected directly from siblings to fully understand their unique perspective, and the ways in which their experiences could be enhanced.
KW - Down syndrome
KW - family
KW - intellectual disability
KW - parental reflections
KW - Rett syndrome
KW - siblings
UR - http://www.scopus.com/inward/record.url?scp=85165137258&partnerID=8YFLogxK
U2 - 10.3109/13668250.2023.2225353
DO - 10.3109/13668250.2023.2225353
M3 - Article
C2 - 39815931
AN - SCOPUS:85165137258
SN - 1366-8250
VL - 49
SP - 11
EP - 24
JO - Journal of Intellectual and Developmental Disability
JF - Journal of Intellectual and Developmental Disability
IS - 1
ER -