UMB Data Catalog
A project of the Health Sciences and Human Services Library-
Attribute Development Using Continuous Stakeholder Engagemement to Prioritize Treatment Decisions: A Framework for Patient-Centered Research
UMB Dataset- Authors
- Susan dosReisWendy Castillo CameloMelissa M. RossMarcy Fitz-Randolph2 more author(s)...
- Description
This study investigated a systematic process for using qualitative data to identify attributes and levels most important to caregivers in making health care treatment decisions. Grounded theory methodology was selected for its suitability in assessing an individual’s response to a specific experience. Stakeholder advisors worked with academic researchers in all phases of the project. A total of 48 caregivers were recruited from community support groups from across Maryland. Criteria for selection were a) responsibility for a child 26 years or younger, b) who had an intellectual, emotional, or social developmental disability and, c) with a concomitant mental health condition. 6 caregivers participated in in–depth interviews while the remaining 42 were distributed among 6 focus groups. This dataset includes family demographics, child characteristics (e.g. school grade level, diagnoses, treatment, behavioral problems, etc.), interview transcripts, focus group data, and attribute descriptions and levels.
- Subject
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CaregiversComorbidityDecision MakingDevelopmental Disabilities
- Geographic Coverage
- Maryland