Interesting Reads - Special Issue "Family Communication at the End of Life" | https://t.co/cc55QjGEqE
Equitable Access to Care for People with Life Limiting Conditions
Access to Care for People with Life Limiting Conditions is a study about healthcare access issues for structurally vulnerable people with serious, life limiting conditions. Our aim is to inform the development of equitable health services and policies in order to improve access to care.
In this three year study, we will observe and interview structurally vulnerable people, their support persons and the service providers who care for them to better understand the experience that they have in accessing health care services. We will also interview key stakeholders to better understand how organizational, social and political contexts influence access to quality health care.
What questions are we asking?
There are 5 questions that guide this study:
- What is the sociodemographic profile of structurally vulnerable populations who are at the end-of-life (e.g., age, gender, diagnosis, location of care and death, co-morbidities, relationship to family, housing status, education, income, and marital status)?
- What are the experiences of accessing health care services at the end-of-life from the perspective of structurally vulnerable people, their support persons and the service providers who care for them? What barriers to accessing healthcare services do they encounter?
- What are the social-structural contexts within which the provision of end-of-life care occurs that influence these experiences?
- How does the wider organizational and sociopolitical context shape relations between structurally vulnerable people and their service providers?
- What interventions, health services and policies will best promote access to equitable care at the end-of-life?
Why are we doing this?
People living in poverty, on the streets or without adequate or stable housing, and impacted by mental health issues and/or drug use, experience barriers to accessing health care services. These experiences are exacerbated by the presence of life limiting conditions such as diabetes, cardiovascular disease, COPD, diabetes, cardiovascular disease and cancers.
People are often admitted to hospitals that do not provide them with quality care and as a result they may avoid or delay accessing care. They often access social service agencies (e.g., shelters, soup kitchens, community health clinics, harm reduction facilities) that have limited staffing, scope and funding to provide adequate care to people with complex needs. Many end up dying in places unfit for human habitation (e.g., outdoors, vehicles, etc.), and/or in shelters or transitional housing, either alone or cared for by support, outreach and housing workers.
There have been recommendations to improve the quality of care for structurally vulnerable people but little evidence to inform the development of services. In this study, we seek to pay close attention to the survival skills and resiliency that individuals employ amidst structural challenges, and the ways that workers in social service agencies strive to provide care within organizational and structural constraints.
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. doi: 10.1097/ANS.0000000000000146
Funding for this project has been provided by the Canadian Institutes of Health Research.
Kelli Stajduhar (UVic)
Sheryl Reimer-Kirkham (TWU)
Ryan McNeil (BC centre for Excellende in HIV/ADIS)
Kristen Kvakic (AIDS Vancouver Island)
Grey Showler (Victoria Cool Aid Society)
Danica Gleave (Victoria Cool Aid Society)
Caite Meagher (Victoria Cool Aid Society)
Caelin Rose (Victoria Hospice)
Bruce Wallace (UVic)
Bernie Pauly (UVic)
Naheed Dosani (William Osler Health; St. Michael's Hospital, Toronto, ON)