From Qualitative Work to Intervention Development in Pediatric Oncology Palliative Care Research. (May 2013)

• Record Type: Journal Article
• Authors: Akard, Terrah Foster; Gilmer, Mary Jo; Friedman, Debra L.; Given, Barbara; Hendricks-Ferguson, Verna L.; Hinds, Pamela S.
• Is Part Of: Journal of pediatric oncology nursing. Volume 30:Number 3(2013)
• Page Start: 153
• Page End: 160
• Publication Date: 2013-05
• Subjects: pediatric oncology -- pediatric palliative care -- qualitative -- intervention development; Cancer in children -- Periodicals; Pediatric nursing -- Periodicals; 618.92994
• DOI: 10.1177/1043454213487434
• Languages: English
• ISSNs: 1043-4542

Abstract

Qualitative methods can be particularly useful approaches to use with individuals who are experiencing a rare disease and thus who comprise a small sample (such as children with cancer) and are at points in care that few experience (such as end of life). This data-based methods article describes how findings from a qualitative study were used to guide and shape a pediatric oncology palliative care intervention. Qualitative data can lay a strong foundation for subsequent pilot intervention work by facilitating the development of an underlying study conceptualization, providing recruitment feasibility estimates, helping establish clinically meaningful inclusion criteria, establishing staff acceptability of a research intervention, and providing support for face validity of newly developed interventions. These benefits of preliminary qualitative research are described in the context of this study on legacy-making, which involves reports of children (7-12 years of age) living with advanced cancer and of their parent caregivers.