The SibKit 2.0, a tool created by siblings, for siblings
Keywords:
Sibling caregivers, Lived experience, Sibling experience, Young caregivers, Co-design, Family engagementAbstract
Introduction: Siblings of children and youth with disabilities are frequently overlooked in pediatric or mental health research. They are often excluded from conversations about their siblings’ care and therefore experience a lack of mental health supports. This paper aims to describe the co-design and development of SibKit 2.0, a booklet built on SibKit ABI, designed to support siblings of children and youth with disabilities. Methods: The SibKit 2.0 was co-designed by Holland Bloorview’s sibling support team, health professionals, and families, including parents and 7 young siblings (ages 7-18). Participants reviewed the original Sibkit ABI and provided recommendations on content, format and design. Feedback was compiled and incorporated into the resource. Findings: Including young siblings as co-designers of the SibKit 2.0 empowered this underrepresented group and improved its content, visual design, and accessibility. Families, clinicians, and community partners provided positive feedback highlighting the value and importance of this resource. To date, over 500 families have accessed the SibKits online. Discussion: Including siblings in the co-design process for SibKit 2.0 provides them with a relevant resource they can use on their own or with a trusted adult, opening the floor for tough conversations and guiding them through future planning. Conclusion: Engaging siblings as co-designers enables the creation of a meaningful resource that reflects their realistic needs. It is important to utilize co-design strategies while developing resources, especially for underrepresented populations.
Keywords: Sibling caregivers, Lived experience, Young caregivers, Co-design, Mental health, Family-centred care.
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