Title : Identifying dying concerns in dyads of african american parents with advanced cancer (AAPWAC) With dependent children and their co-parent/Significant other: A phenomenological study
Background: Half of the population with cancer who are aged 20 to 54 years old will die from cancer with African Americans being 1.2 times more likely to die (NCI, 2019a; 2021b). Parents with advanced cancer (PWAC) have concerns about their future and their remaining family’s future, which causes suffering. Dying concerns are conscious/unconscious thoughts about death by a person facing a terminal illness or a family member coping with the impending death of a loved one (Arndt et al., 2006; Caparso et al., 2020; Kakuta et al., 2015).
Purpose: Examine recruitment feasibility in PWAC and their co-parents.; and (2) Gain a shared understanding of the perspectives of the PWAC about the dying concerns family life before and after advanced cancer diagnosis and family resources to manage the crisis of advanced cancer for the co-parent following Gadamer’s phenomenology and McCubbin and McCubbin’s Family Resiliency Model.
Methods: Four PWAC were recruited from Karmanos Cancer Center and Comprehensive Breast Care. Participants were diagnosed with advanced cancer, scored less than a 3 on the Eastern Cooperative Oncology Group (ECOG) scale, had at least one dependent child 18 years old or younger, identified a co-parent involved in care of the patient and children, and spoke English. Two semi-structured interviews were conducted, audio- video-recorded, and transcribed. The first interview was summarized and given to the participants for member-checking. Data analysis used the hermeneutic rule. All data was coded and verified between coders until consensus was reached.
Results: Due to unforeseen circumstances and hospital restrictions of COVID- 19, recruitment was challenging. Of 32 potential participants, 11 were approached and 4 consented. Completion of all study procedures for one participant took a little over a month. Completion of both interviews ranged about an hour and a half. Four themes regarding dying concerns emerged. Additional themes emerged which may have mediated the dying concern themes. Participants expressed co-parent concerns of “Uncertainty in End-of-Life Decisions”, “Effectless Communication”, “Parental Skepticism” and “Psychological Well-Being”.
Conclusions: PWAC have concerns for their co-parent in the event they die. Qualitatively understanding dying concerns from family members may improve communication between family members and healthcare providers.