Scoping review reveals key concerns of family caregivers, suggesting improvements for guideline development.
Guideline developers should address issues that matter to individuals with RGNDs and their families/caregivers during Evidence-to-Decision processes, such as family-level impact and identity-related considerations. Further research is needed to capture perspectives of individuals with ID, which are underrepresented compared to family/caregivers.
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Haneveld et al. (2026) studied this question.
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