Archived projects

iPANEL was a group of nurse researchers, practitioners, and administrators who shared a common goal of advancing the further integration of a palliative approach into the healthcare system. Our program of research was strongly practice-oriented, meant to inform, and be informed by clinical practice. iPanel website.

Research objective

The main objectives of the study were to: 

1. Provide a detailed contextual description of the experiences of homeless and barely housed individuals in accessing health care services at the end-of-life in Victoria, BC; 
2. Identify barriers and facilitators to promoting quality palliative care for this population; 
3. Review promising programs and practices; and 
4. Develop recommendations for improving access to end-of-life care for structurally vulnerable people.

Study description

For most Canadians, good palliative care is still not a given, despite its many proven benefits that add up to a longer, more comfortable time before death. Access to the services involved, from medical to social to psychological, is uneven across the country and is not universally funded.

Our participants belonged to a vulnerable segment of Canadian society – those in poverty, homeless or barely housed, disabled, racialized, mentally ill, using illicit drugs. To capture this group clearly and without attaching blame or promoting stigma, we have come to describe them as a population who are “structurally vulnerable.” We wanted to find out who these individuals were, how they lived and died, and what we could do to alleviate suffering and loneliness at the end of their lives.

This study was ethnographic, a kind of research that describes humans in their various cultures. For two years, over 300 hours of observations were conducted with 25 homeless and vulnerably housed people, their support persons (e.g., people they choose to act as family), and service providers. A total of 147 interviews were conducted with these groups as well as key informants including managers, medical directors, executive directors, and policy makers. Interviews with representatives of organizations supporting people at end-of-life across Canada, in the United States, and the United Kingdom supplemented our data as well as community knowledge exchange forums to share preliminary findings, gain feedback, and identify any potential data gaps.

Publications:  

• Too Little, Too Late: How we fail vulnerable Canadians as they die and what to do about it
• Stajduhar, K.I., Giesbrecht, M., Mollison, A., Dosani, N., & McNeil, R. (2020). Caregiving at the margins: An ethnographic exploration of ‘family’ caregivers’ experiences providing care for structurally vulnerable populations at the end-of-life. Palliative Medicine, 1-8.  
• Stajduhar, K., Mollison, A., Giesbrecht, M., McNeil, R., Pauly, B., Reimer-Kirkham, S., Dosani, N., Wallace, B., Showler, G., Meagher, C., Kvakic, K., Gleave, D., Teal, T., Rose, C., Showler, C., & Rounds, K. (2019). “Just too busy living in the moment and surviving”: Barriers to accessing health care for structurally vulnerable populations at end-of-life. BMC Palliative Care, 18(11).  
• Giesbrecht, M., Stajduhar, K., Mollison, A., Pauly, B., Reimer-Kirkham, S., McNeil, R., Wallace, B., Dosani, N., & Rose, C. (2018). Hospitals, clinics, and palliative care units: Place-based experiences of formal healthcare settings by people experiencing structural vulnerability at the end-of-life. Health and Place, 53(September), 43-51.  
• Stajduhar, K.I., Mollison, A., Gleave, D., & Hwang, S.W. (2017). Editorial: When cancer hits the streets. Current Oncology, 24(3), 1-2.  
• Reimer-Kirkham, S., Stajduhar, K., Pauly, B., Giesbrecht, M., Mollison, A., McNeil, R., & Wallace, B. (2016). Death is a social justice issue: Perspectives on equity-informed palliative care. Advances in Nursing Science, 39(4), 293-307.  

Most people who are seriously ill prefer to receive care at home. Whether or not this is possible often depends on the support of family or friends. These caregivers inevitably provide the majority of care that the ill person receives and are therefore an indispensable part of enabling people to remain at home during times of serious illness.

Study description

Providing care can be both challenging and rewarding. Given their important contribution, we designed a study that documented and observed the quality of life of caregivers who were providing care to a seriously ill friend or loved one. We then assessed family caregivers’ emotional and physical well-being during their time as a caregiver using the “Carer Support Needs Assessment Tool or CSNAT”. We asked caregivers about the support they received, as well as their satisfaction with healthcare provided. These questions helped us to understand family caregivers’ well-being as it related to the healthcare team.

In parallel Home Care Nurses (HCN) were recruited and trained to use the CSNAT Approach with the family caregivers of their clients. Even though FCG support needs are recognized as high priority, many factors hinder adequate assessment: HCNs, pressed for time, tend to focus on the patient; consideration of FCG needs is often informal and unrecorded; and FCGs may be reluctant to discuss their own needs. In addition, existing tools to address FCG needs are generally too time consuming for routine practice.

Family caregivers were invited to participate in the study shortly after their loved ones were enrolled in a palliative care program. Our researchers worked with the caregivers to complete a questionnaire each month (or every other month) while they were providing care until the time of their loved ones passing or the end of the data collection period.

At the end of the study we analyzed this longitudinal data to review our study findings. While conducting this study and working with the home care nurses it became obvious that more evidence is needed around the context and process of service delivery in the home care sector. This led to an internal report to the health authority leadership team and the CIHR grant submission “Tackling the Home Care Challenge”. This study adds to the body of evidence around nursing practice and family caregiver quality of life and supports while caring for a dying loved one at home.

Research objective

To (1) assess whether a brief questionnaire, used routinely by HCNs, can improve FCG quality of life and identify any specific facilitators and barriers to its use in practice; and (2) to assess any changes in caregivers’ quality of life as it was impacted by the support they received from their communities and the healthcare system while they cared for their seriously ill friend or family member. 

Funding

Funding for this project has been provided by Canadian Frailty Network (CFN) and the Canadian Cancer Society Research Institute (CCSRI).

Co-principal investigators

• Kelli Stajduhar (UVic)
• Richard Sawatzky (TWU)

 Research objectives

1. Described what factors home care nurses (HCNs) took into account when making decisions about the need for and amount of home care nursing services at the end of life.
2. Determined the social contexts within which HCNs worked that influenced their decision making.
3. Explored how relationships between HCNs and family caregivers (FCGs) shaped access to care.
4. Explored how wider organizational and sociopolitical contexts shaped relations between FCGs and HCNs and, therefore, access to care.
5. Explored how knowledge gained from this study could be translated for use in clinical practice and health policy. 

Study description

One of the important social changes of the last quarter century has been a shift in the setting for health care delivery away from institutions. With the population aging, the number of Canadians diagnosed with terminal illness growing, and almost 90 percent of Canadians reporting that they prefer to spend their final days at home, current government policy is pressing for more and better care of the terminally ill in the community. Yet, access to palliative care in the home remains problematic.

Two key components needed to effectively support the patient dying at home are the availability of a FCG and access to home care nursing. The FCG and the HCN work together to assume major responsibility for the coordination and/or delivery of care. HCNs play a pivotal role in making decisions about the allocation of home care nursing services to patients and FCGs and, therefore, to their access to care.

We know very little about the range of factors (micro and macro) that HCNs must take into account when making decisions about the need for and amount of home care nursing services at the end of life and how these decisions are shaped by broader social contexts. Moreover, few studies have critically examined relationships between HCNs and FCGs as mediators of access to health care for dying patients. This information is critical if we are to develop health services that will improve access to care and, therefore, enhance the provision of palliative care to dying patients and their FCGs.

This research sought to extend our understanding of the factors that HCNs took into account when making decisions about the need for and amount of home care nursing services at the end of life, and to examine how the relationships between HCNs and FCGs shaped access to home nursing care. Our ultimate aim was to develop guidelines to inform and support nurses’ decision making and the development of health services and policies in order to improve access to care for patients and FCGs in palliative care.

Funding

Funding for this project was provided by the Canadian Institutes of Health Research.

Principal investigator

Kelli Stajduhar

Research objectives

The primary objective of this study was to evaluate the Compassionate Care Benefit (CCB) from a family caregiver (FCG) perspective.

Study description

Confirmed by a growing body of research, family units are assuming the majority of costs and responsibilities associated with end-of-life caregiving. Such responsibilities are often more considerable than what family caregivers can manage, resulting in compromised emotional, mental, social, financial and physical health.

In an attempt to alleviate some of these costs, numerous governments in the developed world have initiated financial compensation programs for FCGs providing palliative and end-of-life care. The types of compensation offered ranges from the provision of direct or indirect cash benefits, through to labour policies which enable employee caregivers to take a work leave while providing job security.

Canada’s Compassionate Care Benefit was initiated by the federal government in January 2004 and provides eligible workers 6 weeks of employment insurance (EI) benefits for those who take time off work to care for a gravely ill or dying family member at home. At the same time, employers are compelled, via an amended Canadian Labour Code, to grant such leaves and protect the jobs of employees who take them. 

Using tested semi-structured interview schedules, FCGs experiences/perceptions of the CCB were captured via in-depth telephone interviews and were analyzed using a thematic approach.

Three categories of FCGs were recruited in 5 provinces representative of Canada’s regional diversity (Quebec, Ontario, Newfoundland, British Columbia and Manitoba): successful applicants, unsuccessful applicants and non-applicants (i.e. retired, self-employed, unemployed). Interviews were conducted to determine:

1. to what extent were FCGs satisfied with the CCB,
2. perceived strengths of the CCB,
3. recommendations for improving the CCB,
4. FCGs satisfaction with their employer’s response to the leave, and
5. the logistical elements of applying for and/or receiving the CCB.

We accessed FCGs from a wide variety of disease populations, including those providing palliative and end of life care for relatives with cancer, Alzheimer’s disease and end-stage cardiopulmonary disease, in order to capture the diversity of caregiving experiences

While managing a catalogue, or "watching brief," of Canadian policy documents, grey literature, and media reports from a variety of sources specific to the CCB over the funding period, the FCGs’ data was also augmented with focus group discussions with relevant employers and human resource professionals in each province to determine the impact of the leave on FCGs’ workplaces. Further, telephone key-informant interviews were conducted with front-line palliative care practitioners to determine when and how the CCB is described and recommended to FCGs.

Final report

The final report is now available. The report is available in both English and French.

Funding

Funding for this project was provided by the Canadian Institutes of Health Research.

Principal investigators

• Allison Williams (McMaster)
• Valerie Crooks (SFU)

Research objectives

Specific objectives in working with clinical nurse educators and nursing unit team leaders included:

1. Exploring their values, beliefs, assumptions and practices around care of the dying in order to sensitize them to the challenges and opportunities that arise in caring for the dying and their families;
2. Envisioning a transformed practice that would enable them to facilitate excellence in care of the dying with the front-line staff with whom they work; and
3. Developing knowledge translation (KT) strategies for care improvement that are relevant, sustainable, and take into account the realities of their current health care practice environments.

Project summary

The focus of this research was to affect end-of-life (EOL) care by enlisting the existing expertise and knowledge capacity of clinical nurse educators and nursing unit team leaders and to engage with them in a participatory action research (PAR) process to examine and to develop new KT strategies. The intent was to collaboratively engage in a reflexive, critical assessment of current EOL care and KT strategies; to formulate an action plan to challenge and overcome limitations and constraints of current thinking and practice in EOL care; and to develop new ideas, strategies, practices and institutional arrangements for KT.

Funding

Funding for this project was provided by the Canadian Institutes for Health Research.

Principal investigators

• Kelli Stajduhar
• Gweneth Doane (UVic)

Research objectives

1. Describe what family caregivers actually mean when they say that they are coping well or not well.
2. Explore factors that influence why some family caregivers cope with palliative/end-of-life caregiving better than others.
3. Determine the relationship between these factors and family caregiver outcomes of quality-of-life and depression.
4. Determine which family caregivers are at risk of negative outcomes.
5. Determine the family caregivers who, in demanding situations, nevertheless cope well and are not at risk of negative outcomes.
6. Determine what coping strategies are used by family caregivers who manage well.
7. Explore how knowledge gained from this study can be translated for use in clinical practice, policy and education.

Study description

More than 67,000 Canadians die each year from cancer and that number is expected to increase due to the aging of the population. Family caregivers play a vital role in providing palliative and end-of-life care. This is particularly evident in the recent trend of caring for patients with advanced cancer who are dying at home.

Research suggests the burdens associated with caregiving often exceed family caregivers' capacity to cope. While a large body of research exists on the burdens of caregiving, little attention has been given to the positive aspects of the caregiving experience and on those factors that facilitate positive family caregiver coping. There has, furthermore, been a surprising lack of focus on the characteristics of family caregivers of cancer patients who cope well.

This research sought to balance the overwhelming emphasis on family caregiver burden and stress, to examine factors that influence positive coping in end-of-life cancer care. By studying family caregivers who cope well and contrasting them with those who are having difficulties coping, we learned more about how to help those family caregivers who require more support and may be in need of future health services as a result of caregiving.

Such knowledge could provide the basis for the development of prevention and health promotion interventions, inform the development of health policies directed at supporting family caregivers, and prevent the potential social and economic costs associated with family caregiver burnout.

Download the Final Report.

Funding

Funding for this project was provided by the Canadian Cancer Society through the National Cancer Institute of Canada.

Principal investigator

• Kelli Stajduhar

Research objective

The primary purpose of this study was to increase our understanding of high quality care provided at end of life within different inpatient health care settings.

Research questions

1. To what extent were family members satisfied with the quality of care received at the end of life?
2. Did satisfaction with care differ between inpatient care settings?
3. Were there specific components of care that can be identified in each care setting where improvements can be made and, if so, what were they?
4. In relation to the organizational culture of each care setting, what were the organizational barriers/facilitators that influenced the ability to provide quality end of life care?

Study description

The quality of care provided to the dying and their family members has become an important health and social policy issue in Canada and in British Columbia (BC). In 2000, a Canadian senate subcommittee report described obtaining high quality care at the end of life as the "luck of the draw" rather than as a basic service provided. In 2002, the BC Ministry of Health Services echoed these national concerns in a discussion paper, suggesting a greater need for research focused on enhancing care quality.

In 2005 a senate progress report suggested that the health care system was “still not there” concerning the provision of quality end of life care.

A shift in the setting for health care delivery into the home and away from institutions has been a major policy direction for national and provincial governments. Despite such directions, more than 70% of Canadians, and almost 80% of BC residents, spend their final days and die in inpatient care settings. This trend is likely to continue as the population ages and more people are diagnosed with cancer and other end-stage medical diseases.

A Canadian survey demonstrated that patients and their family members were dissatisfied with the quality of end of life care provided in inpatient care settings. A study in BC showed that dissatisfaction with acute hospital care was one of the primary reasons why family members opt to provide end of life care at home, even when they are unprepared or reluctant to do so, or when care becomes overly burdensome for them.

While we are interested in improving end of life care for both patients and families, we also recognize assessments of quality of death and dying are optimally done once the experience is complete. As such, the perceptions of bereaved family members were the focus of this research.

Funding

Funding for this project was provided by the Michael Smith Foundation for Health Research.

Principal investigator

• Kelli Stajduhar

Study description

The purpose of our international research group was to plan and to conduct international, collaborative research studies in the field of palliative family caregiving in order to develop evidence to improve the outcomes and quality of life for family caregivers (FCGs) who are looking after people with life-threatening illnesses. 

Family caregivers represent the backbone of our health and social care system, with estimates suggesting they provide 75%-85% of all care. It is well established that caregiving places considerable physical, psychosocial and financial burdens on FCGs and that these burdens can endanger caregivers’ health and social well-being.

Demographic trends and social changes suggest that the availability of FCGs over the next 30 years is likely to decline. Thus, keeping those available FCGs in the “unpaid” workforce ought to be a priority for all developed nations considering the substantial contributions that FCGs make to the economy. For the FCGs who are available to provide care and who wish to do so, support systems and interventions must be in place to enable FCGs to provide care without endangering their own health.

Researchers at the international symposium on supportive, palliative and end of life care held in Birmingham, England in 2006 identified family caregiving as one of the top international research priorities. However, advancement of knowledge in the area of palliative caregiving has been hindered by a lack of research attention and capacity in the area.

Despite research relating to interventions for patients and their FCGs, there is remarkably little evidence for the effectiveness of interventions that would inform policy and practice. We have a clear vision and serious commitment to working together to better the health and quality of life of FCGs affected by serious life-threatening illnesses.

This team sought to develop an international program of research in palliative caregiving that will capture the complexity of caregiving roles and the differing levels and types of support; highlight the expressed needs of caregivers and gaps in assistance and support; identify interventions aimed at enhancing the knowledge, skills and/or support of FCGs; and present policy suggestions and strategies to ease their burden of caring by providing opportunities for FCGs to maintain their own health as well.

Funding

Funding for this project was provided by the Social Sciences and Humanities Research Council of Canada.

Principal investigator

• Kelly Stajduhar

Research questions

1. How was the abstract principle of “family empowerment” interpreted, enacted and experienced by home care nurses in specific strategies and practices within their organizational contexts? 
2. How were empowerment practices experienced by family caregivers? For instance, did all families react well to empowerment, and did they perceive benefits from this approach?
3. How did patients’ expectations (e.g. role preferences) and related behaviours impact family care giver’s experiences of empowerment?
4. How did these experiences and practices differ between palliative and more general chronic illness care contexts?
5. What were the most effective ways that knowledge gained from this study can be translated for use in clinical practice and health policy?

Project description

A foundational tenet of home care is patient and family empowerment. Increasingly, empowerment is emphasized in health services policy and practice, valued for promoting physical and mental health, enhancing quality of care, and respecting autonomy. It is also motivated by economic concerns of governments seeking to contain service delivery costs.

Implicit in the move to empowerment models of care is an assumption that all individuals desire active involvement in all aspects of care provision and decision-making. However, previous research in acute and long-term care suggests not everyone desires active involvement. This remains to be confirmed in research in home care and palliative care contexts.

This qualitative study examined the interpretation and practice of family empowerment in home care nursing interactions. Using an ethnographic approach this study also observed how empowerment philosophies were enacted in the practice by home care nurses in interactions with families.

Funding

Funding for this project was provided by the Canadian Institutes for Health Research.

Principal investigator

• Kelli Stajduhar