Developing a communication support intervention for cancer caregivers in emerging and young adulthood

Project Summary Caregivers in emerging and young adulthood account for nearly half of all caregivers in the United States; however, they are significantly underrepresented in cancer caregiving scholarship. Little is known about their unique psychosocial needs, and there is a dearth of cancer caregiving resources to support them. Emerging

and young adult caregivers (EYACs, ages 18-35) are a particularly vulnerable caregiving population. They experience higher rates of psychological distress than their older counterparts, as well as lasting impacts to their developmental trajectory as a result of their caregiving experience. Caregiving at this age is particularly

challenging when an EYAC must provide care to a parent with cancer, as they must undergo a distressing relational shift = that creates psychological and communication challenges unique to this patient-caregiver dyad. Diagnosed parents are known to withhold information about their cancer from their adult children, which

creates further difficulties for EYACs in communicating and coping with their parents. Open family communication during cancer has been linked to better social, psychological, and physical health outcomes for both caregivers and patients. Thus, there is a significant need for a communication skills intervention directed

at EYACs of their parents with cancer to help them navigate the interpersonal challenges associated with their caregiving role that can lead to distress. The goal of this project is to identify the complex communication needs unique to this age group and adapt an existing caregiver communication skills training intervention

(Healthy Communication Practice, HCP) to meet their age-specific communication needs. The K99 phase of this project will include two aims: 1) identify EYACs’ unmet communication skill needs via online survey, and 2) use the survey findings to adapt the intervention materials and pre-test them in EYAC focus groups. The R00

phase of the project will pilot test the new EYAC-tailored intervention for feasibility and acceptability. The objective of this application will not only create the first communication support intervention specifically designed for EYACs, but it will also equip Dr. Kastrinos with the necessary skills and training to complete the

proposed research and transition to research independence. She will advance her training in four key areas: 1) psychosocial intervention development and adaption in cancer caregiving, 2) advanced mixed-method and quantitative design and analysis, 3) designing and conducting RCTs, and 4) professional skills development.

She will complete both her training and the proposed research with the full support of her mentors (Drs. Allison Applebaum, Smita Banerjee, Yuelin Li), her collaborators (Drs. Carma L. Bylund and Carla L. Fishers) who are the creators of HCP, and her advisory board (Drs. Kathryn Greene and Youngmee Kim). At the end of her R00

phase, Dr. Kastrinos will submit an R01 application to test the efficacy of the new intervention in a fully powered randomized controlled trial. This K99/R00 plan will enable Dr. Kastrinos to achieve her goal of filling a critical research and resource gap for EYACs and launch a research program addressing their needs.