Reducing informal caregiver burden in cancer: evidence-based programs in practice

• Published in: Translational behavioral medicine 2018-03, Vol.8 (2), p.145-155
• Main Authors: Longacre, Margaret L, Applebaum, Allison J, Buzaglo, Joanne S, Miller, Melissa F, Golant, Mitch, Rowland, Julia H, Given, Barbara, Dockham, Bonnie, Northouse, Laurel
• Format: Article
• Language: English
• Subjects: Cancer; Editor's Choice
• ISSN: 1869-6716; 1613-9860
• DOI: 10.1093/tbm/ibx028

Evidence-based programs or tools described here represent unique approaches to supporting caregivers, and together allow for a greater likelihood of meeting needs across contexts. Caring for people with cancer can be a burdensome and emotionally straining experience. Without adequate psychosocial support, distressed caregivers are at risk for psychiatric and medical morbidity, which can adversely affect patient outcomes. Although there is a tremendous need to provide effective and timely supportive care services for cancer caregivers, few community or clinically based services exist and the needs of these essential caregivers are profoundly underserved. This article describes three existing evidence-based programs and tools that address the needs of family caregivers of cancer patients: (a) the FOCUS Program, tested for efficacy in prior randomized clinical trials and implemented in community settings by agency staff; (b) the Program for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center (MSKCC), which addresses the needs of caregivers in a large health care system; and (c) CancerSupportSource ® -Caregiver, an online platform for distress screening and referral developed by the Cancer Support Community to assess and address caregivers’ needs. We also describe next steps related to broader dissemination for practitioners considering how best to support cancer caregivers now and in the future. Although each evidence-based program or tool represents a unique approach to supporting caregivers, together these approaches allow for a greater likelihood of meeting caregiver needs across a variety of contexts. Collaboration within and across organizations allowed for the development and effective implementation of each of the described initiatives.