Engaging Fathers in Pediatric Palliative Care Research. Issue 1 (2nd January 2020)

• Record Type: Journal Article
• Authors: Nicholas, David; Beaune, Laura; Belletrutti, Mark; Blumberg, Jonathan; Ing, Stanley; Rapoport, Adam; Barrera, Maru
• Is Part Of: Journal of social work in end-of-life & palliative care. Volume 16:Issue 1(2020)
• Page Start: 42
• Page End: 56
• Publication Date: 2020-01-02
• Subjects: Paternal caregivers -- pediatrics -- research engagement -- sample recruitment challenges; Social work with the terminally ill -- Periodicals; Social work with older people -- Periodicals; Social Work -- Periodicals; Terminal Care -- psychology -- Periodicals; Palliative Care -- psychology -- Periodicals; 362.175
• DOI: 10.1080/15524256.2019.1703877
• Languages: English
• ISSNs: 1552-4256

Abstract

Abstract: Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.