Scientific Poster
ISOQOL 2025 Poster: Using a Multiple-Case Study Design to Explore the Experiences of Caregivers of Children with Rare Disease: Lessons Learned from a Study in Leukocyte Adhesion Deficiency, Type I (LAD-I)
Dec 17, 2025
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Although rare diseases affect approximately 400 million people globally, the small populations within each disease require researchers to use innovative methods to generate evidence. In this poster presented at the ISOQOL 2025 annual meeting, the authors present a qualitative study that used a multiple-case design to examine the experiences of caregivers for children with severe Leukocyte Adhesion Deficiency, Type I (LAD-I). Through semi-structured interviews and photo elicitation with five families, researchers identified key burdens related to diagnosis, treatment, and daily caregiving in this small population of patients. Thematic analysis revealed both shared and unique challenges, highlighting the value of innovative qualitative methods for rare disease research and the need for improved support and information for affected families.Listen now to Meaghan O’Connor as she provides an overview of the poster and key takeaways.

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