"Just too busy living in the moment and surviving": barriers to accessing health care for structurally vulnerable populations at end-of-life.

BACKGROUND: Despite access to quality care at the end-of-life (EOL) being considered a human right, it is not equitable, with many facing significant barriers. Most research examines access to EOL care for homogenous 'normative' populations, and as a result, the experiences of those with differing social positioning remain unheard. For example, populations experiencing structural vulnerability, who are situated along the lower rungs of social hierarchies of power (e.g., poor, homeless) will have unique EOL care needs and face unique barriers when accessing care. However, little research examines these barriers for people experiencing life-limiting illnesses and structural vulnerabilities. The purpose of this study was to identify barriers to accessing care among structurally vulnerable people at EOL. METHODS: Ethnography informed by the critical theoretical perspectives of equity and social justice was employed. This research drew on 30 months of ethnographic data collection (i.e., observations, interviews) with structurally vulnerable people, their support persons, and service providers. Three hundred hours of observation were conducted in homes, shelters, transitional housing units, community-based service centres, on the street, and at health care appointments. The constant comparative method was used with data collection and analysis occurring concurrently. RESULTS: Five significant barriers to accessing care at EOL were identified, namely: (1) The survival imperative; (2) The normalization of dying; (3) The problem of identification; (4) Professional risk and safety management; and (5) The cracks of a 'silo-ed' care system. Together, findings unveil inequities in accessing care at EOL and emphasize how those who do not fit the 'normative' palliative-patient population type, for whom palliative care programs and policies are currently built, face significant access barriers. CONCLUSIONS: Findings contribute a nuanced understanding of the needs of and barriers experienced by those who are both structurally vulnerable and facing a life-limiting illness. Such insights make visible gaps in service provision and provide information for service providers, and policy decision-makers alike, on ways to enhance the equitable provision of EOL care for all populations.

Meaning-making and managing difficult feelings: providing front-line end-of-life care.

Managing grief and difficult emotions related to end-of-life (EOL) care is an often under-recognized part of the work of resident care aides (RCAs). In this interpretive analysis we explore the shared and socially constructed ideas that 11 RCAs in 1 Canadian city employ to make sense of death and the provision of EOL care. RCAs spoke of personal challenges involved in witnessing death and experiencing loss, as well as helplessness and frustration when they could not provide quality EOL care. RCAs invoked "consoling refrains" to manage grief, including "such is life," "they are better off," and "they had a full life." To manage guilt and moral distress, RCAs reminded themselves "I did my best" and "I experience rewards." Though these ideas help RCAs, some may need to be reframed through coaching and mentorship, to prevent unintended negative effects on care or the reproduction of ageist beliefs more broadly.

Thyroid cancer: patients' experiences of receiving iodine-131 therapy.

PURPOSE/OBJECTIVES: To enhance understanding of the experiences and educational needs of patients receiving iodine-131 (131I) therapy for the treatment of thyroid cancer. DESIGN: Qualitative design using interpretive description. SETTING: A 24-bed oncology/acute-care medical unit in a large tertiary hospital in western Canada. SAMPLE: 5 men and 22 women (18-80 years of age) who have received 131I therapy in the past two years. METHODS: Unstructured focus group and telephone interviews and field notes. Interviews were tape-recorded, transcribed verbatim, and subjected to thematic analysis. FINDINGS: Researchers elicited four major themes from the analysis: (a) recognizing the totality of the cancer experience, (b) being isolated, (c) recognizing the totality of the treatment experience, and (d) understanding barriers to treatment. CONCLUSIONS: Healthcare providers require a better understanding of thyroid disease and the treatment and side effects of 131I therapy. Furthermore, educational programs are required to adequately prepare nurses and patients for future care. IMPLICATIONS FOR NURSING PRACTICE: A need exists to improve the care and education provided to patients receiving 131I therapy. In particular, recognition of the totality of the cancer experience and the need for both staff and patient education were illustrated. If nurses are to provide comprehensive cancer care, both psychosocial and physical needs must be addressed and fulfilling these needs requires a collaborative approach among patients, nurses, and other healthcare professionals.

Home away from home: essential elements in developing housing options for people living with HIV/AIDS.

There is a paucity of data to enlighten our understanding regarding the need for a respite care/supported living home for people living with HIV/AIDS (PLWHIV/AIDS) and to identify the essential elements required to initiate this endeavor. Participatory action research was used in this study as the process by which the study was conducted. Focus group and in-depth interviews with 78 individuals were completed and subjected to qualitative thematic analysis. The findings suggest that a paucity of choices exist for PLWHIV/AIDS when they can no longer live independently in their own homes. Principles for developing HIV/AIDS housing programs are recommended, highlighting the need for active involvement of PLWHIV/AIDS in the program planning process. It is only with this collaboration and participation that the housing and healthcare needs of PLWHIV/AIDS can be adequately addressed.

Palliative care at home: reflections on HIV/AIDS family caregiving experiences.

This study explored the day-to-day experiences of family members providing care at home for their dying loved one with HIV/AIDS. In-depth interviews with seven caregivers were analyzed using grounded theory qualitative methods. A conceptualization of the family caregiving experience portrays HIV/AIDS caregiving as an intense, emotional, and powerful experience filled with pride and enrichment, and conversely, with anger and disillusionment. Findings reflected a significant need for interventions designed to provide direct and effective support for family members caring for a loved one with HIV/AIDS.

Loss and bereavement: HIV/AIDS family caregiving experiences.

The purpose of this grounded theory study was to describe the experience of HIV/AIDS family caregiving in the palliative phase. Seven in-depth interviews were conducted and analyzed using the constant comparative method. The analysis resulted in a conceptualization of HIV/AIDS family caregiving. This paper describes the "personal work" of caregivers, including reconciling that a loved one would die, making life-and-death decisions, and letting go. The nature of support received to attend to this work is highlighted, with attention to its influences on HIV/AIDS caregiver bereavement. The findings of this study provide some insights into the HIV/AIDS family caregiver experience and reveal a significant need for interventions designed to support caregivers in establishing the mechanisms required for bereavement resolution. The need for the creation of supportive networks for HIV/AIDS caregivers cannot be overstated. Further research is required to help clarify and expand on how social support might have an effect on HIV/AIDS family caregiver bereavement. With this knowledge, health-care providers will be better prepared to anticipate difficulties faced by caregivers, plan appropriate interventions to address these difficulties, prevent future problems, and plan care based on theory and research.