ABSTRACT
Background/Purpose: Young adults with cancer (YAs), ages 18-39, often feel "stuck": they do not identify with children in pediatric clinics, nor older adults in medical oncology. YAs have unique psychosocial challenges that create significant disruptions. At a stage where peers are the primary social support, YAs express feelings of isolation and yearning for normalcy, especially on the heels of the COVID-19 pandemic. To combat this isolation, social programs are only offered to patients under age 18, leaving a gap in YA support. Without opportunities to connect with others who understand similar experiences, YAs lose essential access to informal peer support that could drastically shape their coping. Method(s): The Young Adult Program at Dana-Farber Cancer Institute planned and implemented two in-person social events to connect the YA community outside of hospital walls. Event 1: Patients with metastatic cancer were invited with one guest to attend an MLB baseball game in a private suite. Event 2: Patients were invited with one guest to attend an outdoor fall Block Party *at a local food hall. Each attendee received a favor bag of items to encourage emotional well-being. Access barriers were lowered by covering costs of food/ beverage, parking, and offering handicap accessibility options. Result(s): Attendance at both events exceeded expectations, with 15 individuals (8 patients, 7 caregivers) at event 1 and 74 individuals (42 patients, 32 caregivers) at event 2. Some YAs decided to attend alone, signifying a strong desire to connect with others outside existing social circles. Inviting caregivers provided the experience of meeting other caregivers and normalized cancer's impact on the family. Post-event comments included: "I never knew there were so many YAs";"We were so happy to meet other wonderful examples of strength! It really comforted us so much.thank you for helping us cope!";"Everyone was so relaxed and happy". Conclusions and Implications: These programmatic events highlight the benefit of social opportunities for YAs and caregivers. Spending time together in-person outside of the medical setting allows YAs to build meaningful connections and reduce loneliness. Future endeavors for YAs ought to acknowledge the gaps for this age group by implementing programs that meet YAs where they are in their life stage and cancer experience.
ABSTRACT
In the past decade, the demand for home-based care has been amplified by the Coronavirus disease 2019 pandemic. Home-based care has significant benefits for patients, their families, and healthcare systems, but it relies on the often-invisible workforce of family and friend caregivers who shoulder essential health care responsibilities, frequently with inadequate training and support. Hematopoietic cell transplantation (HCT), a potentially curative but intensive treatment for many patients with blood disorders, is being increasingly offered in home-based care settings and necessitates the involvement of family caregivers for significant patient care responsibilities. However, guidelines for supporting and preparing HCT caregivers to effectively care for their loved ones at home have not yet been established. Here, informed by the literature and our collective experience as clinicians and researchers who care for diverse patients with hematologic malignancies undergoing HCT, we provide considerations and recommendations to better support and prepare family caregivers in home-based HCT and, by extension, family caregivers supporting patients with other serious illnesses at home. We suggest tangible ways to screen family caregivers for distress and care delivery challenges, educate and train them to prepare for their caregiving role, and create an infrastructure of support for family caregivers within this emerging care delivery model.