Honoring the voices of bereaved caregivers: A metasynthesis of qualitative research with bereaved caregivers
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
Issue to be addressed 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.
Lorraine Holtslander, (Principal Investigator) Cindy Peternelj-Taylor(Co-Investigator), Meridith Burles (Co-Investigator), Vicky Duncan (Co-Investigator), Shiela Enns (Specialist), Robin Baxter (Research Assistant/MN Student)
Background: Palliative care and the prison setting are diametrically opposed in their objectives. However, a high portion of those who are incarcerated in today’s prisons are aging, becoming infirm, and/or suffering life threatening diseases. Thus, increasingly, palliative care is a required service in the prison setting. This scoping review of relevant literature seeks to explore and synthesize global evidence and knowledge bases that are available.
The overall purpose of this study is to develop and pilot-test a self-administered, theory-based “finding balance” writing intervention for older adults who are bereaved after caregiving for a spouse with cancer.
Often support systems may not be adequate after caregiving ends and the bereaved caregiver may have difficulty in many ways during this time.
Currently, the writing-based intervention is being pilot-tested in the Saskatoon Health Region, with the support of Janet Martens, Bereavement Coordinator, and Meredith Wild, Manager of Palliative Care Services for the Saskatoon Health Region. Older adults are being interviewed in their homes and given the intervention to see if it helps them with their grief and difficulty finding balance. The data collectors are Registered Nurses, Jill Bally and Tammy Gebhardt.
This study received funding from the Saskatchewan Health Research Foundation.
Meridith Burles (Supervisor: Lorraine Holtslander)
College of Nursing
University of Saskatchewan
Dr. Burles is conducting a qualitative study that aims: to understand the ways in which women experience ovarian cancer as a chronic illness, and to describe how women negotiate the uncertainty of ovarian cancer and the future. Dr. Burles is asking women affected by the illness to participate in face-to-face and email interviews that explore the impact of ovarian cancer on their everyday lives. The findings of this study will identify coping strategies employed by women affected by ovarian cancer and areas for improvement in the care and support of this population.
Overview: It is well documented that ovarian cancer can affect women’s lives in many ways. For example, ovarian cancer may have short and long term implications for women’s physical, psychological, and social wellbeing. Additionally, ovarian cancer can introduce uncertainty because this illness has a high rate of recurrence and relatively low survival rate.
However, according to Dr. Meridith Burles, not enough research has focused on women affected by ovarian cancer to find out about their experiences of this illness and its implications for their everyday lives. As such, Dr. Burles is conducting a qualitative study that aims: to understand the ways in which women experience ovarian cancer as a chronic illness, and to describe how women negotiate the uncertainty of ovarian cancer and the future.
In order to find out about women’s experiences, Dr. Burles is asking women affected by the illness to participate in face-to-face and email interviews that explore the impact of ovarian cancer on their everyday lives. The findings of this study will identify coping strategies employed by women affected by ovarian cancer and areas for improvement in the care and support of this population.
Research regarding cancer patients has become increasingly more prevalent, however research regarding the needs of their family caregivers is lacking, even more so, their experience of bereavement after caregiving ends. The purpose of this study was to explore the ways in which bereaved caregivers find balance in their lives following the loss of their spouse with advanced cancer.
Content Validity of a Finding Balance Scale for Bereaved Caregivers: A Mixed Methods Approach (manuscript currently under review)
Dr. Lorraine F Holtslander, Hollie LA Turner, Master’s student, Department of Psychology, Susan C. McMillan, PhD, ARNP, FAAN Distinguished University Health Professor, University of South Florida
Finding balance was described by bereaved caregivers as “walking a fine line between deep grieving and moving on”. The purpose of this study was to develop and evaluate a Finding Balance scale from qualitative research interview data. The thirty items for the original scale were based on quotes from research interviews with older persons who are bereaved family caregivers of palliative cancer patients and guided by the conceptual framework of Stroebe and Shut’s (1999) Dual Process Model of coping with bereavement.
The concept of finding balance in bereavement is unique and requires further development. A team composed of Dr. Wendy Duggleby, Dr. Ulrich Teucher, Dr. Meridith Burles, and Jill Bally, PhD(c) is currently in the process of applying the hybrid model of concept development to further explore this concept, both from the current literature and from field work.