Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis.
Linda Nguyen, Hanae Davis, Samantha Bellefeuille and 5 others
PMID 36188805WHAT IT FOUND
Most online resources for siblings of youth with chronic conditions offer general information, not practical healthcare management guidance.
Siblings described learning care skills through trial and error, highlighting a critical gap in resources that support their role in navigating healthcare transitions and future planning.
Key findings
01The vast majority of identified resources provided general information about chronic conditions, with only a small number offering specific strategies for siblings to support healthcare management.
02Siblings reported that they often had to learn how to support their sibling's healthcare on their own because information was not passed down from parents, and they lacked resources for future planning.
03A key theme in sibling blogs and interviews was the development of knowledge and skills for healthcare management, which was described as a process of learning through experience rather than formal instruction.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review only included resources in English, excluding French-language materials which are significant in Canada. The documents were limited to those publicly available on the websites of 31 specific organizations, so resources from community services or other providers may have been missed. The analysis was conducted by a single coder, which limits inter-rater reliability, although triangulation with the advisory council was used to enhance credibility. The findings are based on self-reported experiences in blogs and interviews, which may not represent the full spectrum of sibling experiences.
Declared interests
The authors declared no commercial or financial conflicts of interest. The study was funded by the Canadian Institutes of Health Research, the CHILD-BRIGHT Network, and the Scotiabank Chair in Child Health Research.
The easy way to misread this
Do not assume that the availability of general informational resources means siblings are equipped to support healthcare management. This study shows that practical guidance for siblings is scarce, and their involvement in care is often based on informal learning rather than structured support.