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. 2025 May 17;11(1):51.
doi: 10.1186/s40900-025-00731-1.

The co-development and pilot evaluation of the Siblings Training, Empowerment, and Advocacy Kit (Siblings TEAKit) to support youth and young adult siblings of individuals with a disability: A participatory action research qualitative study protocol

Linda Nguyen  1   2   3 , Samantha Bellefeuille  4 , Hanae Davis  4 , Jan Willem Gorter  5   6   7   8 , Marjolijn Ketelaar  5   7   8 , Jennifer Zwicker  9   10 , Keiko Shikako  11   12   13
Affiliations

The co-development and pilot evaluation of the Siblings Training, Empowerment, and Advocacy Kit (Siblings TEAKit) to support youth and young adult siblings of individuals with a disability: A participatory action research qualitative study protocol

Linda Nguyen et al. Res Involv Engagem. .

Abstract

Introduction: Siblings can have multiple roles in the lives of each other over time, including the roles of friend, role model, and caregiver at different time points. These roles may be different for siblings of youth with disabilities, and yet, there are limited resources to support siblings in the health, rehabilitation, and education systems. This protocol outlines a study for which the primary aim is to develop and evaluate a toolkit to support youth and young adult siblings to initiate conversations about their roles and responsibilities with their sibling(s) with a disability and family. The secondary aim of the study is to test a framework for and evaluate the process of partnered research with siblings and other family members.

Methods: This qualitative descriptive study will adopt a participatory approach where a Sibling Youth Advisory Council (SibYAC) of young adult siblings of individuals with a disability and/or chronic health condition will be engaged as research partners. The long standing partnership with the SibYAC and our team has informed the need to conduct this study. This study will be conducted in two stages to address our primary aim. First, a co-design workshop will be held with siblings (ages 14 to 25 years old) to develop the content and format of the toolkit. Second, focus groups will be conducted with siblings, parents, and healthcare professionals to provide feedback on the toolkit prototypes. Data will be analyzed using directed content analysis with implementation science frameworks as a guide. Specifically, the Theoretical Domains Framework and COM-B model will be used to identify toolkit elements focused on supporting siblings, and the Consolidated Framework for Implementation Research (CFIR) will provide considerations about settings for where the toolkit could be implemented in the future. The secondary aim is addressed where our partnership with the SibYAC will be evaluated through formative discussions and the Public and Patient Engagement Evaluation Tool.

Discussion: This study protocol advances the methods and rigour in participatory research with young people, including siblings. This study is the first step towards the development of a toolkit to support siblings of persons with disabilities to foster dialogue between families, health and education professionals about their roles. Clear expectations about family roles can promote positive health and wellbeing for siblings and the whole family.

Plain language summary

Siblings can have different roles in the lives of each other, such as a friend, role model, or caregiver. There are few supports for siblings who are youth and young adults of individuals with disabilities in the fields of health, rehabilitation, and education. This manuscript describes the process to creating and testing a toolkit to help youth and young adult siblings with their sibling(s) with a disability and family. In this study, we partnered with siblings as members of our research team who highlighted the importance of conducting this study. This study will be conducted in two parts. First, a workshop will be held with siblings (ages 14 to 25 years old) to discuss information to be included in the toolkit and how the toolkit should look like. Second, we will have conversations with groups of siblings, parents, and healthcare professionals who can provide feedback on the toolkit. We will analyze the data to see what kind of information should be included in the toolkit and how the toolkit can be delivered. We will use tools to study how we can improve our partnership with siblings and researcher. This study is the first step towards creating a toolkit to support siblings of persons with disabilities. The toolkit can guide siblings in having conversations with their families and healthcare professionals about their roles. It is important to have open and clear communication about the roles that siblings and families have, ultimately supporting positive health and wellbeing of siblings and the whole family.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: This study has obtained ethics approval from the McGill University Institutional Ethics Review Board (A03-E12-23B) and the Centre for Interdisciplinary Research in Rehabilitation (MP-50–2023-1839) in Montreal, Quebec, Canada. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
A description of approaches and frameworks applied in this study
Fig. 2
Fig. 2
A diagram to describe the steps in the data analysis process
Fig. 3
Fig. 3
A diagram to describe the iterative process of the evaluations of our partnership throughout the human-centered co-design study phases
Fig. 4
Fig. 4
A diagram to broadly describe the application of approaches and frameworks in participatory action research
See this image and copyright information in PMC

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