Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents.
Method: To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically.
Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future.
Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents' and siblings' views regarding an expected future burden.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.3109/13668250.2021.1892261 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
The association between the COVID-19 pandemic and interpersonal relationships among youth with a child maltreatment history.
Front Child Adolesc Psychiatry
November 2024
Department of Community Health Sciences, Max Rady College of Medicine, University of Manitoba, Winnipeg, MB, Canada.
Introduction: The COVID-19 pandemic had significant impacts on youth health and well-being. Youth with prior inequities, such as those exposed to child maltreatment, may have experienced greater psychosocial challenges and long-term difficulties than their peers, including sustained interpersonal relationships problems. Given the importance of healthy relationships during adolescence and early adulthood, the significant impact the pandemic had on youth, and the potential disproportionate challenges for youth with a child maltreatment history, the purpose of the present study was to better understand changes in relational conflict among youth with and without a child maltreatment history from the perspectives of youth themselves.
View Article and Find Full Text PDFSiblings of adults with intellectual disabilities in Chinese societies: A scoping review.
J Intellect Dev Disabil
September 2024
Living with Disability Research Centre, La Trobe University, Bundoora, Australia.
Adult siblings without disabilities play important roles in relation to their brothers and sisters with intellectual disabilities. This study reviewed knowledge about adult sibling relationships in Chinese societies, where one sibling has intellectual disability. Five English and two Chinese databases were searched for publications published up to 2022.
View Article and Find Full Text PDFDown syndrome or Rett syndrome in the family: Parental reflections on sibling experience.
J Intellect Dev Disabil
March 2024
Telethon Kids Institute, Centre for Child Health Research, The University of Western Australia, Perth, Australia.
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.
Whose voice is it anyway? Adults with intellectual disabilities and future planning: A scoping review of qualitative studies.
J Intellect Dev Disabil
June 2024
College of Nursing and Health Sciences, Flinders University, Adelaide, Australia.
Background: Future planning is a way of supporting people with intellectual disabilities and their families to think about their support needs as both groups age. Adults with intellectual disabilities, family members, and service providers are often involved in planning processes. However, it is unclear whose perspectives dominate in the literature and how these might vary.
View Article and Find Full Text PDFKMT2C Polymorphism in Familial Hypospadias.
Indian J Pediatr
January 2025
Department of Pediatric Surgery, All India Institute of Medical Sciences, New Delhi, 110029, India.
Hypospadias, a common congenital anomaly of male genitalia, shows significant heritability and familial recurrence, particularly in consanguineous families. This study explored the role of KMT2C polymorphisms in a Yemeni family with two affected siblings. Comprehensive analysis identified 475 unique SNPs in KMT2C, with 59 shared between parents, suggesting common ancestry.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!