Adult-Child Caregivers’ Family Communication Experiences after an Older Parent’s Blood Cancer Diagnosis: A Survey Exploring Their Openness, Avoidance, and Social Support

SIMPLE SUMMARY: Adult children in midlife often become their aging parent’s caregiver after a blood cancer diagnosis. Navigating this role reversal during midlife is an additional challenge. Adult children juggle multiple roles (as spouse, parent, and professional). Blood cancer caregiving also involves unpredictable challenges. These challenges can make communicating even more complex. We explored what adult-child caregivers do to enhance their family’s communication and what they struggle with when talking to diagnosed parents. A total of 124 adult-child caregivers participated in an online survey. Results showed that caregivers perceive that family communication is enhanced when they communicate openly and frequently. They use technology to maintain contact, facilitate connectedness, share information, and encourage involvement. Diagnosed parents and their adult children struggle with being open. Yet, when they communicate more openly about cancer with family, they have more support. Interventions could help caregivers take the lead in facilitating openness and support after their parent’s blood cancer diagnosis. ABSTRACT: Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers’ perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support.