“You Want to Shield Your Kids”: Patients’ and Their Adult-Children's Serious Illness Conversations

Context: Timely and transparent serious illness conversations (SIC) between family caregivers and patients facilitate high-quality end-of-life care and patients’ and family caregivers’ mental wellbeing, but frequently do not occur, happen too late, or are incomplete. While social relations and roles shape communication, few studies explore their influence on patient-caregiver SICs. Objectives: Investigate how the parent-child relation and roles shape SICs between cancer patients and their adult-child caregivers (ACC), the largest caregiver population. Methods: Qualitative interviews were conducted with 47 participants: advanced cancer patients (n = 16), their ACCs (n = 23), and bereaved ACCs (n = 8). Interviews were transcribed and analyzed using a theoretical thematic approach. Results: Respondents’ experiences with SICs centered on three key themes: (1) the parent role could hinder SICs in an attempt to protect their ACC while expectations to prepare one's child promoted SICs; (2) adult-children's busy life phase (e.g., marriage, children, career) hampered their prognostic awareness and added emotional weight to parent-child SICs; and (3) the child role dictated expectations for SICs and amplified distress when ACCs felt they were expected to engage in SICs in ways concordant with another role (e.g., patient's spouse or nurse). Conclusion: The fundamental rebalancing of the parent-child relation and roles when an adult-child cares for their parent creates unique challenges for patients and their ACC to discuss and plan for end-of-life. To encourage timely, effective SICs, clinicians and caregiver services in and outside the clinic need awareness and guidance on how goals of care conversations must incorporate family caregivers’ and patients’ familial role expectations.