Siblings of individuals with an LD during emerging adulthood LD V1
Research type
Research Study
Full title
How do individuals in emerging adulthood make sense of their role and relationship with their sibling who has a learning disability.
IRAS ID
346381
Contact name
Lee Hogan
Contact email
Sponsor organisation
Bangor University
Duration of Study in the UK
1 years, 1 months, 1 days
Research summary
Research Summary:
Who carried out this research? This study was completed by Phoebe Veness (Née Crook) as part of the Doctorate of Clinical Psychology at Bangor University. The study was supervised by Dr Lee Hogan (Chief Investigator), Dr Alan Dowey and Dr Carmel Harrison. The sponsor for this research was Bangor University.
What public involvement was there in the study? Expert by experience involvement informed the development of the study. Consultation took place with:
• an individual with a learning disability,
• an expert by experience who was also a sibling of an individual with a learning disability,
• and a colleague working within a third sector learning disability organisation.
These individuals provided feedback on the research proposal, participant information sheet, and interview schedule.Where and when did the study take place?
Participants were recruited across the UK through social media groups and third sector organisations supporting individuals with a learning disability and their families. Despite active recruitment of siblings through NHS learning disability services in North Wales, no participants were recruited from NHS learning disability services.Why was the research needed?
Previous research has highlighted the important role siblings may play in the lives of individuals with a learning disability across the lifespan. However, less is known about how siblings themselves experience emerging and young adulthood. Emerging and young adulthood is a period where people often develop independence, identity, and adult roles. This study aimed to better understand how having a sibling with a learning disability may shape experiences during this stage of lifeWhat were the main questions studied?
The study explored:
• how siblings of individuals with a learning disability experience emerging and young adulthood,
• how sibling relationships and family roles change during this period,
• and how participants made sense of identity, relationships, and future responsibilityWho Participated in the study?
Nine adults aged between 21 and 37 years participated in the study. All participants identified as having a sibling with a learning disability. Most participants were female.Method:
Participants completed semi-structured interviews exploring their experiences of being a sibling to an individual with a learning disability during emerging and young adulthood.
Interviews were analysed using Interpretative Phenomenological Analysis (IPA), a qualitative research approach focusing on how individuals make sense of lived experiences.What were the results of the study?
Four main themes were identified:
1. "Adulthood shaped within a changing family system":
Participants described changing family relationships and increased emotional responsibility during adulthood.
2. "Becoming someone in your own right while remaining a sibling":
Participants described balancing independence and personal identity alongside ongoing family connection and responsibility.
3. "Social connections: on a path to finding acceptance from others":
Participants reflected on how sibling experiences shaped friendships, romantic relationships, and feelings of social acceptance.
4. "Living with a future that is never fully one’s own":
Participants described concerns about future caregiving responsibilities, uncertainty, and balancing personal goals with anticipated family responsibilities.
Overall, participants described adulthood not as separation from family, but as balancing independence alongside enduring family connection and responsibility.Implications of the research:
This study contributes to understanding the experiences of siblings of individuals with a learning disability during adulthood, an area that has received relatively limited research attention. The findings highlight the importance of recognising siblings as active members of the family system and may help inform future support services and clinical understanding of sibling experiences and future concerns.Many siblings of individuals with a learning disability (LD) worry about the future of their sibling with LD when their parents are no longer able to care for them and the impact that this may have on their lives (Davys et al., 2011; Davys et al., 2010). Within both the family life cycle and Erikson’s stages of development, the time period of 18-35 years (also referred to as emerging adulthood), is typically a time focused on moving away from the family unit, creating a sense of autonomy and distancing oneself from the family unit. It is unknown whether the typical pattern of emerging adulthood occurs for siblings in LD families and whether there are specific challenges associated with this move into adulthood. Specifically, it is unclear how the relationship with their sibling with LD changes during emerging adulthood. The study aims to explore the roles that siblings take on and the relationship they have with their sibling with LD during the period of emerging adulthood. Understanding the roles and relationships individuals have with their sibling with LD can help services to understand and support siblings to be involved in their sibling with LD’s life in a way that best suits them.
This study will involve 60- to 90-minute interviews, using Microsoft teams, with adults aged between 18-40-years-old about their experiences of being a sibling to an individual with a learning disability. There will be no contact with the individual with a learning disability. There will be a question to establish eligibility (i.e., asking the sibling to confirm that their sibling has a learning disability and that their sibling aged over 18).
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
24/EM/0265
Date of REC Opinion
12 Dec 2024
REC opinion
Further Information Favourable Opinion