Honoring the voices of bereaved caregivers: A metasynthesis of qualitative research with bereaved caregivers
Issue to be addressed: What is the experience of bereavement for family caregivers after the death of the patient? Many of Canada’s almost 1 million family caregivers will become bereaved each year, as more than 68% of the 238,000 deaths in Canada in 2009 were due to a chronic disease, such as cancer, heart disease and dementia. Family caregivers, heavily relied upon by the health care system during the disease, are usually left to face bereavement without support, after an often exhausting and difficult caregiving experience. A significant gap exists in end-of-life care policy, supports and services for these bereaved caregivers.
The overall goal and objectives for this metasynthesis were developed in partnership with Sharon Baxter, Executive Director of the Canadian Hospice Palliative Care Association. An international, interdisciplinary team of knowledge users and academic researchers, experienced in metasynthesis research, will complete this project. Team members include an information scientist and internationally recognized experts in research, policy and practice with family caregivers facing end-of-life issues. This project’s team of experts is committed to providing quality palliative care, which includes support into bereavement.
Methodology: In order to identify and describe specific policies and interventions appropriate to support bereaved caregivers, the overall goal of this metasynthesis is to explore the experiences of bereaved family caregivers of persons with terminal illness (dementia, cancer etc.) who received palliative care. The specific objectives are: a) to systematically and comprehensively search and retrieve all completed qualitative studies with bereaved caregivers of persons who received palliative care, b) appraise these studies, c) complete a classification of findings, and d) synthesize the findings.
Following rigorous metasynthesis procedures will provide a fully developed explanation of the experience of bereavement for family caregivers. Since qualitative research has been conducted in the real world, as opposed to a laboratory, it provides the best source of evidence for directing research and clinical practice. The results of the metasynthesis will have immediate application to practice and policy and fill a gap in quality palliative/end-of-life care. This new understanding of the needs and experiences of family caregivers during bereavement will provide the foundation for innovative health research, evidence-informed policy, and clinical practice guidelines to support health care systems and improve their health outcomes. Given the lack of research, clinical supports, and understanding of the needs of bereaved family caregivers, this metasynthesis will result in clinically useful knowledge; translatable into improving end-of-life care outcomes.
This study addresses a major concern of the health care system: how to support the growing population of Canadians providing care to family members by protecting their well-being as they transition from caregiving into bereavement. Family caregivers are vital, and depended on, to provide end of life care; services, policy, and appropriate interventions, developed and refined to meet their needs, are urgently needed to promote their health and ensure positive outcomes. Policy and clinical practice guidelines will result from an extensive plan for knowledge translation, involving national and provincial level knowledge users, and an international level of expertise.
Lorraine Holtslander (Principal Investigator), Wendy Duggleby (Co-investigator), Shelley Peacock (Co-investigator), Peter Hudson (Co-investigator), Vicky Duncan (Co-investigator), Dan Cooper (Co-investigator), Sharon Baxter (Principal Knowledge User). CIHR. 2014-03 to 2015-02
