Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis

Nguyen, Linda; Davis, Hanae; Bellefeuille, Samantha; Havens, Jessica; Jack, Susan M.; Rezze, Briano Di; Ketelaar, Marjolijn; Gorter, Jan Willem

doi:10.3389/fresc.2021.724589

Cited by 6 publications

(10 citation statements)

References 54 publications

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“…Despite the need for discussions about future planning with the whole family, a previous review of the grey literature about resources for siblings to support with healthcare management identified no resources to facilitate family conversations for future planning . Members of the SibYAC described the valuable role that they have to their sibling with a disability, and there should be conversations with parents, service providers and professionals about these roles (Bellefeuille et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

“…A review and analysis of online resources found that siblings shared in blogs and interviews about the roles and responsibilities that they have to their sibling with a neurodisability, such as providing support and attending therapy appointments (Nguyen et al, 2021). Siblings also shared information about the emotions they experience when they assume many of these roles, including feelings of frustration, guilt and stress, as well as love and care for their sibling with a neurodisability (Nguyen et al, 2021). While siblings have shared brief descriptions of their roles, details are needed about the types of roles that siblings have to their sibling with a neurodisability during the transition to adulthood.…”

Section: Introductionmentioning

confidence: 99%

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Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood

Nguyen,

Jack,

Davis

et al. 2024

Child

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BackgroundDuring the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision‐making process of how siblings chose these roles.MethodsIn this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40 years old, had a sibling between 14 to 21 years with a childhood‐onset neurodisability and spoke English. Semi‐structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision‐making process associated with these roles. Our team partnered with siblings with lived experience in all study phases.ResultsNineteen participants (median age = 19 years, range = 14 to 33 years) from 16 unique families were interviewed. Six unique roles were described: friend, role model/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four‐phase decision‐making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings.ConclusionsSiblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood

Nguyen,

Jack,

Davis

et al. 2024

Child

Self Cite

View full text Add to dashboard Cite

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“…In our review of online resources [ 149 ], siblings identified in blogs and interviews about the importance of first acquire knowledge about the NDD of their sibling before they could learn specific skills. In addition to knowledge, the siblings also learned about coping skills to address the challenges that they experienced in their sibling relationship.…”

Section: Discussionmentioning

confidence: 99%

“…The siblings participating in programs may wish to access additional resources for their learning. For example, a review of sibling resources was recently synthesized across children’s hospitals, organizations, and treatment centers in Canada that could be shared with siblings [ 149 ]. Existing programs could consider how to expand the content of their programs with resources that the siblings may refer to.…”

Section: Discussionmentioning

confidence: 99%

Programs to Prepare Siblings for Future Roles to Support Their Brother or Sister with a Neurodevelopmental Disability: a Scoping Review

Nguyen

Bootsma²,

Rezze³

et al. 2023

Curr Dev Disord Rep

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Purpose of Review To identify and map the characteristics and outcomes of programs designed to prepare siblings for their future roles with their sibling with a neurodevelopmental disability. Recent Findings Existing programs to support siblings of individuals with a neurodevelopmental disability often focus on providing information about neurodevelopmental disabilities, creating a community for siblings to connect with each other, and connecting siblings to resources and services to support them in their roles. Some programs are offered to the whole family with specific sessions for siblings. While these program descriptions are provided in the literature, there is limited understanding about the impacts and outcomes of these programs on siblings of an individual with a neurodevelopmental disability. Summary Fifty-eight articles (published between 1975 and 2020, with > 50% published since 2010) met the inclusion criteria, representing 54 sibling programs from 11 countries. Extracted data represented 1033 (553 females) sibling participants, between 4 and 67 years old. Twenty-seven programs focused on the outcome of knowledge acquisition for the siblings and thirty-one programs focused on the outcome of empowerment for the siblings to teach skills to their sibling with a neurodevelopmental disability. While there is an increasing number of programs for siblings of individuals with a neurodevelopmental disability in the past decade, there is a lack of siblings as co-developers or facilitators. Future research should consider the various roles that siblings can have in programs to address their needs.

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“… 32 This is particularly relevant when examining the roles and responsibilities of siblings and the changes in family dynamics that may have occurred as a result of the COVID-19 pandemic. 31 , 33 , 34 The goals of this study were to explore the experience of living through the COVID-19 pandemic for youth with chronic pain, as well as siblings and parents of youth with chronic pain across Canada, and describe this experience using the theoretical foundation of the family adjustment and adaptation response model 35 to develop a substantive account.…”

Section: Introductionmentioning

confidence: 99%

“We survived the pandemic together”: The impact of the COVID-19 pandemic on Canadian families living with chronic pain

Killackey

Soltani

Noel

et al. 2023

Canadian Journal of Pain

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Introduction Pediatric chronic pain is a significant problem in Canada, affecting one in five youth. This study describes the impact of the pandemic on the experiences of Canadian families living with chronic pain through interviews with youth living with chronic pain, parents, and siblings. Methods Employing a qualitative descriptive design, in-depth semistructured interviews were completed with Canadian youth living with pain, as well as parents and siblings. Participants were not required to be related. Interviews were analyzed using a reflexive thematic analysis approach. Results Forty-four interviews were completed with 14 parents, 19 youth with chronic pain, and 11 siblings from across the country. Three key themes were developed: (1) absorbing and shifting: the toll of the pandemic on the family system (e.g., loss of coping mechanisms, shifting roles to respond to the pandemic), (2) social ambiguity and abandonment (e.g., social sacrifice and abandonment by the health care system), and (3) building community resilience: familial adaptation to the pandemic (e.g., family cohesion, confidence, and self-management). Discussion/Conclusions Youth, parents, and siblings reported that the pandemic impacted coping strategies across the family system. These results outline the challenges youth experienced managing their pain and overall health throughout the pandemic and the resilience built within families during this time. Going forward, it would be relevant to examine how racialized and structurally marginalized youth with chronic pain and their families experienced the pandemic. Future research should examine how unexpected benefits of the pandemic (e.g., increased confidence and self-management) may be sustained into the future.

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Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis

Cited by 6 publications

References 54 publications

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood

Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood

Programs to Prepare Siblings for Future Roles to Support Their Brother or Sister with a Neurodevelopmental Disability: a Scoping Review

“We survived the pandemic together”: The impact of the COVID-19 pandemic on Canadian families living with chronic pain

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