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

INTRODUCTION: In 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. METHODS: As 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. RESULTS: Nineteen 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. CONCLUSION: Siblings 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.

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

BACKGROUND: During 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. METHODS: In 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. RESULTS: Nineteen 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. CONCLUSIONS: Siblings 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.

Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation.

BACKGROUND: Connections between individuals and organizations can impact knowledge translation (KT). This finding has led to growing interest in the study of social networks as drivers of KT. Social networks are formed by the patterns of relationships or connections generated through interactions. These connections can be studied using social network analysis (SNA) methodologies. The relatively small yet diverse community in the field of child development and rehabilitation (CD&R) in Canada offers an ideal case study for applying SNA. The purposes of this work are to (1) quantify and map the structure of Canadian CD&R KT networks among four groups: families, health care providers, KT support personnel, and researchers; (2) explore participant perspectives of the network structure and of KT barriers and facilitators within it; and (3) generate recommendations to improve KT capacity within and between groups. Aligning with the principles of integrated KT, we have assembled a national team whose members contribute throughout the research and KT process, with representation from the four participant groups. METHODS: A sequential, explanatory mixed-method study, within the bounds of a national case study in the field of CD&R. Objective 1: A national SNA survey of family members with advocacy/partnership experience, health care providers, KT support personnel, and researchers, paired with an anonymous survey for family member without partnership experience, will gather data to describe the KT networks within and between groups and identify barriers and facilitators of network connections. Objective 2: Purposive sampling from Phase 1 will identify semi-structured interview participants with whom to examine conventional and network-driven KT barriers, facilitators, and mitigating strategies. Objective 3: Intervention mapping and a Delphi process will generate recommendations for network and conventional interventions to strengthen the network and facilitate KT. DISCUSSION: This study will integrate network and KT theory in mapping the structure of the CD&R KT network, enhance our understanding of conventional and network-focused KT barriers and facilitators, and provide recommendations to strengthen KT networks. Recommendations can be applied and tested within the field of CD&R to improve KT, with the aim of ensuring children achieve the best health outcomes possible through timely access to effective healthcare.

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

Background: As children and adolescents with a chronic health condition (CHC) age and transition to adulthood, many will increasingly assume responsibilities for the management of their healthcare. For individuals with CHCs, family members including siblings often provide significant and varied supports. There are a range of resources in Canada to support siblings of individuals with a CHC, but these resources are not synthesized and the extent to which they relate to healthcare management remains unclear. Purpose: The purpose of this document review was to identify, describe, and synthesize the types of resources currently available to provide general information and healthcare management information about how siblings can provide support to individuals with CHCs in Canada. Methods: Print and electronic resources were systematically identified and retrieved from the websites of organizations, treatment centers, and children's hospitals that are part of Children's Healthcare Canada. Each unique resource was treated as a text document. Documents that met the following inclusion criteria were included: addressed the topic of siblings of individuals with a CHC and written in English. Data were extracted from included documents and qualitative conventional content analysis was conducted. Throughout the process of this review, we partnered with a Sibling Youth Advisory Council. Results: The systematic search yielded 1,628 non-duplicate documents, of which 163 documents met the inclusion criteria. Of the total of 163 documents, they were delivered in the following formats: 17 (10%) general informational products (e.g., booklets, videos) about a CHC and sibling relationships, 39 about support programs and workshops (24%), 34 news articles (21%) that described the roles of siblings, and 6 (3%) healthcare management informational products (e.g., toolkit, tipsheets), 31 blogs (19%) and 39 interviews (24%) with parents and siblings. In the blogs and interviews, siblings and parents described how siblings developed knowledge and skills for healthcare management, as well as their role and identity over time. Significance: This study identified that there are limited resources available about healthcare management for siblings of CHC in Canada. Resources are needed to facilitate conversations in the family about the role of siblings with healthcare management of their sibling with a CHC.