Coding Tree for Qualitative Study on Healthcare Transition in Rare Renal Disorders

28 in-depth interviews with 11 adolescents and young adults and 17 parents living with rare renal disorders form the basis of this qualitative dataset. The data was collected and analyzed by Melissa Kinch using reflexive thematic analysis, resulting in five key themes about the healthcare transition experience. The dataset was last updated in June 2026 and is shared under a CC-BY-4.0 license.

Use Cases

• Analyzing patient and parent perspectives on healthcare transition based on the five identified themes (e.g., complex nature of disorders, preparing to move on).
• Developing frameworks for holistic transition support based on the emphasis on educational transitions, peer connection, and psychological support mentioned in the findings.
• Informing policy and intervention design for rare disease care based on the call for individualized, collaborative approaches highlighted in the study.

Strengths

• Includes perspectives from two distinct stakeholder groups: 11 adolescents/young adults and 17 parents.
• Analysis followed a structured qualitative methodology (reflexive thematic analysis) and reported according to the COREQ checklist.
• Patient and public contribution was incorporated via input from a rare-disease advisory group.

Limitations

• The dataset is very small at 21.5 KB, indicating limited scope and scale.
• Column-level documentation is absent; field semantics must be inferred after download.
• Row count is unknown, which may limit suitability assessment for quantitative tasks.

Provenance

Source

Melissa Kinch via figshare.

Collection Method

Qualitative descriptive study using 28 in-depth interviews.

Freshness

Last updated 2026-06-03 17:54:33; freshness should be verified.