RESUMO
OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.
Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Canadá , Cuidados Paliativos/métodos , CuidadoresRESUMO
We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem.
Assuntos
Filhos Adultos , Cuidadores , Efeitos Psicossociais da Doença , Autoimagem , Cônjuges , Filhos Adultos/psicologia , Filhos Adultos/estatística & dados numéricos , Colúmbia Britânica/epidemiologia , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Feminino , Nível de Saúde , Humanos , Entrevistas como Assunto , Masculino , Qualidade de Vida , Cônjuges/psicologia , Cônjuges/estatística & dados numéricosRESUMO
Despite the focus on burden of caregiving in gerontological research, studies have shown that few caregivers are overly burdened. This article compares predictors of role-specific burden and two quality-of-life measures among caregivers experiencing heavy care demands to assess role-impact on each. The study included 92 community-based caregivers on Vancouver Island. Predictors included primary stressors, personal resources, and socio-demographic factors. Demands of caregiving emerged as the most significant correlate of role-specific burden and was important for overall well-being indirectly, through burden. Resilience was an important correlate of all three outcomes. Over the year of the study, caregivers improved in all three outcomes examined, but we were unsuccessful in predicting that change. Findings suggest caregivers can both be burdened and simultaneously experience good or high well-being, pointing to the importance of not generalizing from studies restricted only to caregiver burden in making recommendations about these people's overall lives.