Despite the focus on providing care to all family members as a basic principle of pediatric palliative care, remarkably little attention has been paid to fathers when their child is seriously ill and dies. Findings from research team members' previous studies provide the basis for this proposal. The project's overall goal is to develop an empirically grounded and theoretical conceptualization of the experiences of fathers whose child has died following the receipt of end-of-life care for a life-limitingcondition. Specific aims are to 1) describe fathers' understanding of themselves as fathers, men, spouse/partners, and workers/community members in relation to their experiences of having a seriously ill child who died; 2) describe fathers' experiences with their ill child and other family members; 3) describe fathers' experiences with the health care system, particularly health care providers, and explore how the expectations of the health care system influencefathers' experiences; and 4) describe fathers' understanding of their ill child's and other family members' experiences with various health care providers. In addressing each specific aim, we will also examine how i) fathers' experience changed through the transitions from diagnosis to the final phase of the condition, to the time of death, and into bereavement with emphasis on the final phase of the illness; ii) fathers' ways of coping were affected and changed over time, and what factors influencedtheir coping; and iii)fathers' ethnic and cultural background influencedtheir overall experiences. Participants will include up to 70 fathers whose child received care at one of four types of settings or programs that provide pediatric end-of-life care (two children's hospitals, home care program, inpatient hospice) in three US geographic regions. Fathers will include various ethnic groups (Latino, Asian, African American, as well as Caucasian); concerted efforts will be made to include single, divorced, and gay fathers. Up to three semi-structured interviews will be conducted with each father by trained individuals. Translated and transcribed interviews, along with field notes, will be subjected to procedures of grounded theory analysis. Findings will offer insight, enhance understanding, and provide meaningful guidance for future family-level investigations and for clinical care in the area of pediatric end-of-life care.
NIH ExPorter
NIH ExPorter