Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the U.S. study.

Abstract

4 Background: Informal caregiving for cancer patients can be both demanding and burdensome – physically, emotionally, and financially – for many caregivers. Cancer caregivers play a large role in advocating for and administering care for their recipients. The current study aimed to explore if cancer caregivers differ from non-cancer caregivers with regard to communicating with healthcare providers, and need for information about end-of-life care. Methods: Data were used from the 2015 Caregiving in the U.S. (CGUS) dataset, a nationally-representative online probability-based panel study of unpaid adult caregivers. The analysis compared cancer and non-cancer caregivers to determine similarities and differences in characteristics and experiences, with a focus on unmet needs in communication with healthcare providers and end-of-life decision-making. Statistical significance was determined at the p < 0.05 level. Results: Approximately 7% (2.8 million) of caregiver participants in the CGUS study indicate cancer as the primary reason for providing care. Cancer caregivers report higher burden than non-cancer caregivers (62% vs. 38%) and significantly more hours per week caregiving (32.9 vs. 23.9 hours per week). Significantly more cancer caregivers indicate interacting with key providers, agencies, and professionals on behalf of their care recipients: 82% report communicating with healthcare professionals (vs. 62%), 76% monitor/adjust care (vs. 66%), and 62% report advocating for care recipient (vs. 49%). Finally, almost twice the number of cancer caregivers than non-cancer caregivers (40% vs. 21%) report needing more help/information with making end-of-life decisions. Conclusions: These findings indicate the burdensome and demanding role of cancer caregiving. These caregivers play a substantial role in directing, monitoring, and advocating for survivor care. Yet, many need more information about end-of-life care. This suggests a gap in preparation despite the roles provided, and suggest a need to explore strategies to engage patient-provider-caregiver communication about care, particularly end of life care.

Palliative Care and the Family Caregiver: Trading Mutual Pretense (Empathy) for a Sustained Gaze (Compassion)

“…However, caregivers who report feeling more prepared for the caregiving experience report lower levels of personal strain during cancer care [ 9 , 11 ]. Cancer caregivers experience greater burden than non-cancer caregivers in the U.S., and provide more hours of caregiving per week, and cancer caregivers need significantly more help making end of life decisions than do non-cancer caregivers [ 13 ].…”

A critical literature review of dyadic web‐based interventions to support cancer patients and their caregivers, and directions for future research

“…Increasing numbers of cancer patients require more caregivers who are broadly known as a friend or relative providing unpaid care for a person with a chronic or disabling condition . Compared with the caregivers of noncancer patients, caregivers of patients with cancer spend more time on caregiving (32.9 vs 23.9 hours per week) . A study reported that cancer patient caregivers spend approximately 8.3 hours per day caring for cancer patients with distant metastasis .…”

Support Needs for Bhutanese Family Members Taking Care of Loved Ones Diagnosed with Advanced Illness

“…Although evidence indicates that family members caring for cancer patients have a higher burden, 35 there is less literature on the family support needs for non-cancer conditions. 7 In this study, half of the participants were in the latter group.…”

“…Logistic regression models were performed separately for carers of cancer patients and those of non-cancer patients, as evidence indicates that their support needs vary. 35 Statistical significance was set at α = 0.05.…”