Adult Siblings Consider the Future: Emergent Themes

Davys, Deborah; Mitchell, Duncan; Haigh, Carol

doi:10.1111/jar.12172

Cited by 27 publications

(28 citation statements)

References 38 publications

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“…Adult siblings' worries about the future of their brother or sister with IDD and/or ASD is a prominent theme in the literature, especially in qualitative studies (Davys et al, 2016;Rawson, 2010). Adult siblings express concern about their brother or sister's access to appropriate services, the type of care they might need in the future, and their health (Davys et al, 2016). The current analysis helps to understand the factors that may contribute to concern or pessimism about the future and what it holds for the sibling and their relationship with their brother or sister with ASD.…”

Section: Discussionmentioning

confidence: 99%

Adult Siblings Who Have a Brother or Sister with Autism: Between-Family and Within-Family Variations in Sibling Relationships

Orsmond

Fulford

2018

J Autism Dev Disord

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Prior research on the sibling relationship in the context of autism spectrum disorder (ASD) has included only one sibling per family. We used multi-level modeling to examine aspects of the sibling relationship in 207 adults who have a brother or sister with ASD from 125 families, investigating variability in sibling relationship quality and pessimism within and between families. We found that there was greater variability in aspects of the sibling relationship with the brother or sister with ASD within families than between families. Sibling individual-level factors were associated with positive affect in the sibling relationship, while family-level factors were associated with the sibling's pessimism about their brother or sister's future. The findings illustrate the unique experiences of siblings within families.

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Section: Discussionmentioning

confidence: 99%

Adult Siblings Who Have a Brother or Sister with Autism: Between-Family and Within-Family Variations in Sibling Relationships

Orsmond

Fulford

2018

J Autism Dev Disord

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“…Yet, awareness was abstract and participants in this study were less concerned about future responsibilities. This contrasts with other studies which have found that, for many adult siblings, future involvement is connected with anxieties and questions about the impact on their adult lives (Davys et al ., ; Eisenberg & Baker, ; Harland & Cuskelly, ). It is perhaps the case that the physical distance between siblings is a moderating factor in the anticipation of future need.…”

Section: Discussionmentioning

confidence: 99%

“…Siblings play varying roles and face multiple issues at different life phases; thus, there appears to be a need to understand the changing nature of the relationship across the life course (Burke, ; Davys et al ., ; Greenberg et al ., ). The time around adolescence and young adulthood may be a particularly crucial period for both the individual and their sibling, as it may, arguably, set the scene for the developing relationship as siblings age.…”

Section: Introductionmentioning

confidence: 99%

“…Many families of children with intellectual disabilities report positive experiences, such as a gaining alternative perspectives and increased opportunities for learning (Davys, ; Pelchat et al ., ). However, the support needs of children with intellectual disabilities can place a significant burden upon close family members (Davys et al ., ; Emerson et al ., ).…”

Section: Introductionmentioning

confidence: 99%

“…This appears to be true across cultures (Derivishaliaje & Murati, ; Ying Li, ). Although much of the early research pathologised the sibling experience (Lavigne & Ryan, ; Martino et al ., ), studies employing qualitative, phenomenological designs suggest that having a sibling with an intellectual disability can be a positive or benign influence (Davys et al ., ; Heller & Arnold, ; Rossiter & Sharpe, ).…”

Section: Introductionmentioning

confidence: 99%

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‘It's different, but it's the same’: perspectives of young adults with siblings with intellectual disabilities in residential care

Jacobs¹,

Macmahon²

2016

Brit J Learn Disabil

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Accessible summary• Siblings often play important roles in the lives of people with intellectual disabilities.• This study suggests that young adults who have siblings in residential care can feel isolated in their experience.• Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities.• There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care. AbstractBackground: Siblings often play significant roles in the lives of people with intellectual disabilities. This study aimed to give voice to young adults whose siblings have an intellectual disability and are in residential care. Materials and Methods: Six participants were interviewed, with interpretative phenomenological analysis methodology employed. Results: Emergent themes included family and sibling relationships and concerns for the future. However, ambivalence, in terms of conflicting feelings within participants themselves, was striking. Dissonances within narratives included identifying as 'one family' whilst living apart, experiencing guilt while being supportive of the residential placement, and emphasising the normality of the sibling experience whilst also feeling different and isolated. Conclusion: These findings reflect the particular complexity of sibling relationships when the person with an intellectual disability lives in residential care. There is a need to understand more about the perspectives of siblings, and the influence that residential care may have upon these.

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“Filling in the gap”: A qualitative case study about identity construction of siblings of youth with a neurodisability

Nguyen,

Jack,

Davis

et al. 2024

Journal of Adolescence

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IntroductionIn families of children with a neurodisability, siblings have unique experiences that can shape their identity. There is limited information about the developmental process of how siblings form their identity. This study aims to understand the identity construction of young siblings who have a sibling with a neurodisability.MethodsAs part of a patient‐oriented research program, we engaged with our Sibling Youth Advisory Council in Canada. In this qualitative case study, data from semi‐structured interviews augmented by photo elicitation and graphic elicitation of relational maps were analyzed using reflexive thematic analysis.ResultsNineteen sibling participants (median age = 19 years, range = 14–33 years) reflected on the uniqueness of their role during childhood. During adolescence and emerging adulthood, they became closer with their sibling with a neurodisability and increased communication with their parents about how to care for their sibling with a neurodisability. These experiences influenced how they explored and began to reconcile their sibling identity with their professional and social identities.ConclusionSiblings of youth with a neurodisability discover their unique identity and require support in this developmental process. Future interventions could evaluate how supports for siblings can have an impact on the positive development of their identity.

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Adult Siblings Consider the Future: Emergent Themes

Abstract: The findings highlight that whilst the impact of intellectual disability upon adult siblings is variable, siblings are concerned about the future, and that life stage and circumstance appear to influence care giving.

Cited by 27 publications

References 38 publications

Adult Siblings Who Have a Brother or Sister with Autism: Between-Family and Within-Family Variations in Sibling Relationships

Adult Siblings Who Have a Brother or Sister with Autism: Between-Family and Within-Family Variations in Sibling Relationships

‘It's different, but it's the same’: perspectives of young adults with siblings with intellectual disabilities in residential care

“Filling in the gap”: A qualitative case study about identity construction of siblings of youth with a neurodisability

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