Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?

Abstract

A great deal of clinical cancer care is delivered in the home by informal caregivers (e.g. family, friends), who are often untrained. Caregivers' context varies widely, with many providing care despite low levels of resources and high levels of additional demands. Background Changes in health care have shifted much cancer care to the home, with limited data to inform this transition. We studied the characteristics, care tasks, and needs of informal caregivers of cancer patients. Methods Caregivers of seven geographically and institutionally defined cohorts of newly diagnosed colorectal and lung cancer patients completed self-administered questionnaires (n = 677). We combined this information with patient survey and chart abstraction data and focused on caregivers who reported providing, unpaid, at least 50% of the patient's informal cancer care. Results Over half of caregivers (55%) cared for a patient with metastatic disease, severe comorbidity, or undergoing current treatment. Besides assisting with activities of daily living, caregivers provided cancer-specific care such as watching for treatment side effects (68%), helping manage pain, nausea or fatigue (47%), administering medicine (34%), deciding whether to call a doctor (30%), deciding whether medicine was needed (29%), and changing bandages (19%). However, half of caregivers reported not getting training perceived as necessary. In addition, 49% of caregivers worked for pay, 21% reported poor or fair health, and 21% provided unpaid care for other individuals. One in four reported low confidence in the quality of the care they provided. Conclusions Much assistance for cancer patients is delivered in the home by informal caregivers, often without desired training, with a significant minority having limited resources and high additional demands. Future research should explore the potentially high yield of addressing caregiver needs in improving quality of cancer care and both survivors' and caregivers' outcomes.

Support for Caregivers of Cancer Patients: Transition After Active Treatment

“…Caregiver activities, roles, and demands during posttreatment depend on the residual impact and the treatment the patient has received as well as the long-term expectation of survival and outcome of treatment (13,14,(20)(21)(22). From our work, we have found that 60% of 143 patients who were from 2 to 6 weeks posttreatment reported substantial problems (23).…”

“…The need for caregiver involvement following active patient treatment may continue for several years, as patients have residual symptoms, late effects, and disability (13,14,19). Caregiver activities, roles, and demands during posttreatment depend on the residual impact and the treatment the patient has received as well as the long-term expectation of survival and outcome of treatment (13,14,(20)(21)(22).…”

“…When patients move through the care trajectory into the survivorship phase, roles and demands of caregivers change and caregivers assume responsibility to assist with coordination of ongoing care, but, as research shows, care needs remain for a large number of patients (12)(13)(14). Preparing the family member for the transition into survivorship is a vital part of the provider's role.…”

Guía de práctica clínica para la atención psico-oncológica del cuidador primario informal de pacientes con cáncer

“…El algoritmo recomienda la utilización de alguno de los siguientes instrumentos al evaluar sintomatología depresiva: Escala de Depresión del Centro de Estudios Epidemiológicos (CES-D) (>16) (26,27) Inventario de depresión de Beck (BDI) (mínima 0-9, leve 10-16, moderada 17-29 y severa 30-63) (28,29) . Ansiedad: Inventario de ansiedad: rasgo-estado (IDARE): estado (mínima 36-44, leve 45-52, moderada 53-61 y severa 62-79), rasgo (mínima 23-31, leve 32-37, moderada 38-43 y severa 44-68) (30,31) .…”

Assessing Patient-Centered Communication in Cancer Care: Measures for Surveillance of Communication Outcomes

“…7 Poor communication between clinicians and patients and their families can have significant negative consequences, including less patient or family satisfaction with cancer care, 8,9 less trust in physicians, 10 fear of being abandoned, 11,12 poorer pain control, 13 feelings of hopelessness, 14 caregiver burden, 15,16 less commitment to treatment decisions, 17 lower rates of cancer screening, 18 and disparities in cancer care. 19,20 Given the importance of PCC in improving cancer care quality and outcomes, there is a need for systematic assessment of patients' communication experiences when receiving cancer-related health care.…”