Recommendations to Promote Caregiver Wellbeing: Perspectives from Family Caregivers of Ambulatory Patients with Newly Diagnosed Advanced Cancer (RP415)

• Published in: Journal of pain and symptom management 2022-06, Vol.63 (6), p.1090-1091
• Main Authors: Gray, Tamryn, Do, Khuyen, Lathan, Christopher, Kozyreva, Olga, Merriam, Priscilla, Loeser, Wendy, Winer, Eric, Luskin, Marlise, McCleary, Nadine, Kormushoff, Margaret, Ciampa, Abigail, Leonard, Frances, El-Jawahri, Areej, Tulsky, James
• Format: Article
• Language: English
• Subjects: Access; Ambulatory care; Ambulatory health care; Cancer; Caregivers; Community; Inpatient care; Interviews; Medical diagnosis; Medical prognosis; Newly diagnosed; Oncology; Patients; Relatives; Saturation; Support services; Teams; Tumors; Well being
• ISSN: 0885-3924
• DOI: 10.1016/j.jpainsymman.2022.04.056

Outcomes. 1. Identify the name and role of the family caregivers involved in the oncology patient's care during the ambulatory care visit 2. Assemble a list of community-based and hospital-based resources that offer support for family caregivers to any family caregiver in need Importance. As cancer care has shifted from inpatient to ambulatory settings, family members assume additional caregiving responsibility without the same close attention of an inpatient care team. Family caregivers' needs in the ambulatory setting are often underaddressed, and little is known about what specific support is lacking. Objective(s). To identify the recommendations of family caregivers from diverse racial and ethnic backgrounds for improving their experience of providing care to ambulatory patients with newly diagnosed advanced cancer in community- and academic-based ambulatory settings. Method(s). We conducted semistructured interviews in caregivers of adults with newly diagnosed advanced solid tumors and hematologic malignancies receiving outpatient oncology care (n = 20). Interviews were recorded, transcribed, and analyzed via open, line-by-line, and inductive coding until thematic saturation was reached. Results. Three primary recommendations emerged from these family caregivers. First, they expressed a desire to feel acknowledged by both the clinical care team and people in their community. Therefore, family caregivers recommended that health systems establish routine check-ins to assess and support them throughout the illness trajectory. Second, they asked that clinicians facilitate their positive adaptation to poor prognosis, including how they might face and accept the reality of prognosis and be involved in care decisions. Finally, family caregivers recommended that clinicians share resources and information on who, when, and how to access support in advance of their need for these services. Conclusion(s). Family caregivers offered key recommendations to enhance caregiver wellbeing when caring for patients with advanced cancer in the ambulatory care setting. Institutions should consider routine check-ins to assess caregiver wellbeing and interventions to help caregivers adapt to prognosis and access information about support services. Impact. Family caregiver roles are rapidly evolving due to shifts in cancer care toward ambulatory settings. Increased efforts are needed to promote wellbeing in this unique caregiver population.