Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving

Abstract

Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers, their tasks, psychosocial needs and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and by consequence, their caregivers, warrant increased attention to the roles and demands of caregiving. This paper reviews current evidence presented in a two-day meeting to examine the state of the science of informal cancer caregiving convened by the National Cancer Institute and National Institute for Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This paper offers recommendations for moving science forward in four areas: (1) improve estimation of the prevalence and burden of informal cancer caregiving; (2) advance development of interventions designed to improve outcomes in cancer patients, caregivers, and patient-caregiver dyads; (3) generate and test strategies to integrate caregivers into formal healthcare settings; and (4) promote use of technology to support informal cancer caregivers.

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review (Preprint)

“…These findings meet the "Research Recommendations for Improving the Assessment of the Prevalence and Burden of Informal Cancer Caregiving" [86], emphasizing the need to direct attention towards the most vulnerable caregivers of cancer patients, such as those socially isolated, living in rural areas, or with low socioeconomic status. Social isolation and low appraisal of caregiving, along with depression, financial stress, and lack of choice in being a caregiver, are important risk factors of caregiver strain, affecting their burden perception [87,88].…”

An evidence-based stress management intervention for allogeneic hematopoietic stem cell transplant caregivers: development, feasibility and acceptability

“…Stress management Caregivers of cancer patients experience distinct challenges and greater burden than non-cancer caregivers [1] as well as adverse health consequences [2,3]. However, limited research has focused on psychosocial interventions for cancer caregivers [4]. Caregivers of patients receiving allogeneic hematopoietic stem cell transplants (Allo-HSCT) are a particularly distressed group [5,6].…”

Anxiety and Depressive Symptoms Among Two Seriously Medically Ill Populations and Their Family Caregivers: A Comparison and Clinical Implications

“…Findings support the priority of studying psychiatric distress among patients with ANI and their family caregivers and translating findings into empirically-based supportive interventions for these distressed populations, as has been a research priority in the psychosocial oncology field [19, 20]. …”

“…Caregivers’ anxiety and depressive symptoms interfere with their ability to provide high-quality care to the patient [14], and are also associated with their own risk for disease development [15, 16] and mortality [17]. As a result, early assessment and management of caregivers’ distress has also become a clinical priority, yet remains rare in practice [18, 19]. …”

“…Extensive literature documents psychiatric distress among both patients with cancer and increasingly their family caregivers, which has provided the evidence necessary to implement psychosocial screening, referral, and intervention into care standards for patients [20–22] and research priorities among caregivers [19]. Psychosocial screening programs and supportive interventions integrated into oncology care are seen as critical to achieving patient- and family-centered care [23], and have shown to improve outcomes ranging from patient-provider communication [24] to prolonged survival and quality of life among patients at end of life [25].…”