Background/Purpose: 4.6 million Americans serve as unpaid caregivers for someone with cancer. The burden of caregiving poses challenges to one’s physical, psychological, financial and spiritual health. Our project aimed to explore caregiver needs and provide comprehensive information and practical guidance to enhance coping during and after treatment. Methods: We conducted targeted interviews with 50 caregivers of patients with high risk cancers (brain, head and neck, lung, gastrointestinal, gynecologic, breast and hematologic cancers) to prioritize and discuss their most pressing concerns. Caregiver quality of life and well-being was assessed using validated tools that were measured at baseline and 6 months later. A Caregiver Resource Manual was developed with a list of tangible resources and provided to all families. Supportive interventions included counseling, palliative care, referral to nutrition and support groups.

Results: The interviewed caregivers included spouses, children, friends and parents. At baseline, 55% of patients had stage IV disease. Within 6-months, 38% of patients expired or progressed, 59% stayed in remission or remained stable on treatment. At baseline, 65% of caregivers reported moderate/high distress, 39% scored moderately/high in feeling their life was imposed upon, and 58% scored moderately/high in difficulty meeting their own medical needs. After intervention, moderate/high scores improved by 25% in distress, 18% in feeling life was imposed upon and 12% in attending to medical needs. The well-being survey found an 8% increase in all aspects assessed.Conclusion: Our project recognized patients and caregivers as one unit of care with information and support needed for both. The interventions improved caregiver stress and overall well-being. We found a gap in adequately preparing families for progressive nature of disease highlighting the need for proactive palliative care in the future.

Citation Format: Joyce Marie Koerber, Magdolna Solti. Breaking the silent struggles: Development of a cancer caregiver support program [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS9-44.