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Attribute Development Using Continuous Stakeholder Engagemement to Prioritize Treatment Decisions: A Framework for Patient-Centered Research
UMB Dataset

UID: 39

Author(s): Susan dosReis*, Wendy Castillo Camelo, Melissa M. Ross, Marcy Fitz-Randolph, Angela Vaughn-Lee, Beverly Butler * Corresponding Author
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 of Study
Subject Domain
Population Age
Adult (19 years to 64 years)
Child (2 years to 12 years)
Adolescent (13 years to 18 years)
Subject Gender
Access Instructions
Please contact Dr. Susan dosReis
Associated Publications
Data Type
Software Used
Nvivo 10
SAS 9.3
Study Type