Publication year
2017
Citation Title
The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities.
Journal Name
Journal of Applied Research in Intellectual Disabilities
DOI
10.1111/jar.12421
Summary
Individuals with intellectual and developmental disabilities often have significant support needs that may be filled by their siblings. To understand this relationship, this study sought to investigate the types of roles an individual assumes when they have a sibling with either severe intellectual and developmental disabilities or extensive to pervasive support needs. Findings from this study indicated that these individuals may assume at least four out of seven different roles in their lifetime, such as friend and legal representative.
Key Findings
Participants identified having assumed seven distinct roles: caregiver (65%), friend (65%), advocate (62%), legal representative (54%), sibling (52%), leisure planner (34%), and informal service coordinator (19%).
Almost half (48.1%) of the participants assumed at least four or more of the seven roles.
Roles assumed by participants changed over time. Most notably, participants indicated an increase in sibling responsibilities as they transitioned into adulthood due to assuming roles (e.g., legal representative) that their aging parents could no longer fulfill.
Implications for Military Professionals
Attend trainings on intellectual and developmental disabilities to enhance their ability to provide support to Service members who have a sibling with intellectual and developmental disabilities
Facilitate support groups for Service members who have a sibling with intellectual and developmental disabilities
Implications for Program Leaders
Disseminate information on advocacy and legal representation to Service members with a sibling with intellectual and developmental disabilities
Provide classes on ways to maintain effective communication for Service members with a sibling with intellectual and developmental disabilities
Implications for Policy Makers
Promote the development of inclusive leisure activities for Service members and their sibling with intellectual and developmental disabilities
Recommend professional education including information on military culture for civilian professionals who work with Service members caring for a sibling with intellectual and developmental disabilities
Methods
Data were collected via an online survey; the survey was only offered electronically (no paper copies were distributed).
Participants were recruited through partnerships with sibling organizations and organizations supporting individuals with intellectual and developmental disabilities and their families.
To analyze the data, each researcher individually read the first 24 survey results and identified initial themes. Researchers then compared their themes and refined them into codes. These codes were then used to analyze the remaining surveys.
Participants
The study sample included 79 participants with an average age of 40 years. Of this sample, 74.7% of the participants were female, and 74.7% of the participants were older than their sibling.
Participants in the study had at least one sibling with either severe intellectual and developmental disabilities or extensive to pervasive support needs.
The most commonly reported disabilities among the siblings were intellectual disability (55.7%), autism spectrum disorder (29.1%), down syndrome (20.3%), and cerebral palsy (16.5%).
Limitations
Data for this study were only collected through electronic means, this limited the study from reaching participants who did not have access to a computer or internet.
Descriptions of disabilities were assessed by participants' reports instead of official diagnosis which limits the study as participants reports may be inaccurate.
Findings reflect the experiences of participants who were also part of support groups for families of individuals with disabilities at the time of survey completion; hence, findings of the the study may not generalize to all individuals who do not attend such groups.
Avenues for Future Research
Study the impact caregiving an adult sibling with disabilities has on caregivers' health
Include participants with siblings who have intellectual and developmental disabilities that were not involved in support groups
Investigate the relationship between roles and specific types of intellectual and developmental disabilities
Focus
Civilian
Target Population
Population Focus
Abstract
Background: Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD.
Method: Seventy-nine adult siblings from 19 to 72 years of age completed an online survey with open-ended questions about the roles they play in their relationships with their brother or sister.
Results: Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator.
Conclusion: Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles.
Method: Seventy-nine adult siblings from 19 to 72 years of age completed an online survey with open-ended questions about the roles they play in their relationships with their brother or sister.
Results: Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator.
Conclusion: Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles.
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