TBM TBM page 145 of 155 Reducing informal caregiver burden in cancer: evidence-based programs in practice Margaret L. Longacre, 1,2 Allison J. Applebaum, 3 Joanne S. Buzaglo, 2 Melissa F. Miller, 2 Mitch Golant, 2 Julia H. Rowland, 4 Barbara Given, 5 Bonnie Dockham, 6 Laurel Northouse 7 Abstract Caring for people with cancer can be a burdensome and emotionally straining experience. Without adequate psy- chosocial support, distressed caregivers are at risk for psy- chiatric and medical morbidity, which can adversely afect patient outcomes. Although there is a tremendous need to provide efective and timely supportive care services for cancer caregivers, few community or clinically based services exist and the needs of these essential caregivers are pro- foundly 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 efcacy in prior randomized clinical trials and implemented in community settings by agency staf; (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 dis- tress 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 prac- titioners 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 caregiv- ers, 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 efective implementation of each of the described initiatives. Keywords Cancer caregiving, Distress screening, Evidenced-based programing, Psychosocial interventions, Quality of life INTRODUCTION Cancer caregiving is pervasive and increasingly under- stood as an intensive, burdensome, and emotionally draining experience [1–4]. A growing proportion of Americans will serve as caregivers in coming decades due to an increasing prevalence of cancer (from popu- lation growth and longevity) [5]. Approximately 2.8 million or 7% of all informal caregivers in the USA pro- vide care due to a primary diagnosis of cancer, and this is likely an underestimate as many provide cancer care secondary to another condition [3]. In addition, more than 1.6 million Americans are expected to receive a new cancer diagnosis in 2017 [6]. Cancer caregivers perform diverse roles and tasks. They are often part of a patient’s health care team as they advocate, communicate, and contribute to decisions about treatment [1, 3], and perform many nursing-related tasks often with little preparation [3, 7 , 8]. Caregivers frequently report high emotional stress and many experience poor mental health outcomes [2, 3, 9–11]. Poor emotional responses among caregivers create secondary effects on pa- tient and caregiver outcomes, such as decreased caregiver health [2], depressed patient mood [12], and poorer informal care quality [13]. Having unmet needs is a strong predictor of poorer mental health among caregivers [14], while receipt of interventions that provide information and support have bene- fits for caregivers and care-recipients alike. Three meta-analyses [10, 15, 16] assessing psychoeduca- tional interventions for caregivers alone or for pa- tient–caregiver dyads (i.e., pairs) indicate a number of positive effects. Psychoeducational interventions can improve caregivers’ physical [10] and mental well-being [10, 15, 16], reduce caregiver burden, and improve caregivers’ coping skills, self-efficacy, and aspects of their quality of life [10]. In addition, interventions directed to caregivers and/or dyads can also improve patients’ physical health outcomes [15, 16]. Yet, few existing interventions have been Implications Practice: Describing evidence-based programs and tools for cancer caregivers will inform prac- titioners considering how best to support cancer caregivers now and in the future. Policy: Cost-effective programs and tools that are accessible are needed to address the multiple concerns of a large number of caregivers. Research: Research efforts going forward to address the supportive needs of cancer caregiv- ers must be collaborative within and across organizations. 1 Department of Public Health, Arcadia University, Glenside, PA 19038, USA 2 Research and Training Institute, Cancer Support Community, Philadelphia, PA 19131, USA 3 Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY 10022, USA 4 Ofce of Cancer Survivorship, National Cancer Institute, Rockville, MD 20850, USA 5 College of Nursing, Michigan State University, East Lansing, MI 48824, USA 6 Cancer Support Community Greater Ann Arbor, Ann Arbor, MI 48105, USA 7 School of Nursing, University of Michigan, Ann Arbor, MI 49109, USA CASE STUDY © Society of Behavioral Medicine 2018. All rights reserved. For permissions, please e-mail: journals. permissions@oup.com Correspondence to: ML Longacre, longacrm@arcadia.edu Cite this as: TBM 2018;8:145–155 doi: 10.1093/tbm/ibx028 Downloaded from https://academic.oup.com/tbm/article/8/2/145/4827737 by guest on 16 February 2023