Canada's Compassionate Care Benefit: Is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

Abstract

BackgroundAn increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model.MethodsAs part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework.ResultsInformal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants.ConclusionsThis study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden.

Burden among partner caregivers of patients diagnosed with localized prostate cancer within 1 year after diagnosis: an economic perspective

“…Public health response has been intended to address known aspects of caregiver burden in other countries [34]. We hope that, given the suggestion of excess time borne by caregivers relative to patients, the results of our study will make researchers, clinicians, and policy makers more aware of the burden that cancer treatment places on patients' families and motivate them to consider additional support to those patients and caregivers in need in the USA.…”

Family caregivers’ perceptions of an Irish palliative day-care unit: A qualitative descriptive study

“…Over the past two decades therapeutic options for patients with active disease have shifted to outpatient facilities and patients survive longer, which has led to an expansion of the caregiver role and the development of palliative day centres [1]. The World Health Organization (2002) position paper on palliative care emphasizes that family members should be supported during the caring process.…”

“…An emphasis on home care for patients with advanced disease has meant that family caregivers' are taking on greater responsibilities [3]. The role of the caregiver has become an essential and expansive one, incorporating many tasks of care which can vary from assisting with activities of daily living, medication management and administration, provision of nutritional support, physical care, emotional support, providing transport to appointments and household management [1]. Thereby care giving for this group can be difficult and caregivers' can become vulnerable and prone to exhaustion, fatigue, anxiety, sleeplessness, weight loss, burnout, social isolation and general deterioration in health [4,5].…”

“…With a shift in services to outpatient facilities caregiver roles are expanding [1]. While caring for a loved is rewarding it can also be stressful and exhausting [16,17] with feelings of grief and loss associated with impending death [18,19].…”

“…The nurse in palliative day-care empowers family caregivers' [23], establishes an engaged relationship [1,23], provides information, knowledge and skills [23,24], affirms self-worth [23], and provides reassurance and hope [1,25]. Effective communication utilising verbal and non-verbal skills, personal attributes and knowledge is necessary when supporting caregivers' [4,26].…”