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Individuals in the final stages of life are often cared for by informal caregivers whose interpretation of the patient’s signs, symptoms and treatment needs and options may be incongruent with that of healthcare providers (Docherty et al., 2008). Nurses need to fully understand the scope of this disparity. The purpose of this study was to determine how Black caregivers interpreted signs, symptoms, and treatments for symptom relief during the last months of their loved one’s life. The effect on caregiver decision making was explored. This project is a secondary analysis of preexisting qualitative data. Transcripts from 5 focus groups encompassed 53 participants. All participants were Black and informal caregivers or decision makers for a loved one at their loved one’s end of life. Eighty-seven percent of caregivers were female, and a majority had a high school education. The mean age was 66. Transcripts were coded for themes independently by two researchers. To allow for the most open interpretation, no a priori set of codes was utilized. 3 main categories of signs, 4 main categories of symptoms, 4 themes of the interpretation of signs and symptoms, 4 main categories of treatments and interventions, 5 themes of the interpretation of treatments, and 3 themes describing the effect of signs, symptoms, and treatments on decision making were identified. Case examples of the caregiver interpretation process are included. Health care providers need to provide time, clear and simplified language, and additional explanation in communication. Further research combining health literacy measures and qualitative data on interpretations should be conducted.

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Importance – The homeless face higher rates of morbidity and mortality than the general population, and have lower rates of end-of-life care planning. An effective and sustainable intervention, to provide living wills and durable power of attorney, is required to protect the autonomy of a vulnerable population. Objective – To determine if medical student-led 1:1 counseling is as effective as social worker-led counseling as reported in the literature, determined by rate of advanced directive completion. Design – A focus groups and educational sessions on EOL care and ADs were conducted at 2 shelters, after which participants were offered the opportunity to sign up for a 1:1 counseling session with a medical student volunteer. Rates of sign-ups and completion were recorded. Setting – 2 North Philadelphia homeless shelters, requiring either an Axis I or current substance abuse diagnosis for residence. Participants – A convenience sample of 20 homeless men were approached; 10 enrolled in the study. Interventions – Educational sessions, focus groups, and 1:1 AD completion counseling sessions Main Outcomes – Interest in and completion of an advanced directive. Results – 9 participants signed up to complete ADs after an informational session. At the conclusion of the study, 8 of them (88.8%) completed ADs. 40% of the total participants completed an AD. Conclusions – Similar rates of advanced directive completion were achieved with the student-led intervention compared to a previous intervention in the literature. Further study with a larger sample including homeless women should be conducted to provide a generalized conclusion. / Urban Bioethics

This study focuses on understanding the experiences of bereaved South Asian family caregivers living in Canada. Findings suggest that South Asian caregivers face several challenges and that there is a need for a more culturally sensitive palliative approach to care. / The South Asian population faces several challenges when receiving palliative care, including language barriers, unawareness of resources, and poor cultural awareness among health care providers (HCP). However, little is known about the needs of South Asian family caregivers in Canada. The purpose of this study is to understand the experience of bereaved South Asian informal caregivers, who cared for a family member in their last year of life. An interpretive descriptive design was used. Eleven participants were recruited by referral through a community hospice and a community health centre. Participants were South Asian informal caregivers and at least two months bereaved. Audio-recorded one-on-one interviews were conducted followed by a thematic analysis of the transcripts. Five themes were identified to describe the experience of bereaved South Asian informal caregivers: transforming perceptions of life and death, the influence of culture on the experience; the challenges of being a caregiver; coping with the challenges of care-giving; and getting support. Caregivers expressed feeling a sense of duty to their family members and were reluctant to utilize long-term care homes or hospices. The perceived hierarchy of HCP roles also affected their experience. In reflecting on their experiences, caregivers had a deeper appreciation for life and were more willing to talk about death and dying. The experience of South Asian family caregivers is complex with several underlying cultural influences. This study has important implications in improving the delivery of culturally sensitive palliative care and developing supports that address the challenges experienced by caregivers in the South Asian community. / Thesis / Master of Science (MSc) / The South Asian community faces many challenges when receiving palliative care, including language barriers and health care providers (HCP) who do not understand the South Asian culture. However, little is known about the needs and experiences of South Asian family caregivers. In this study, South Asian caregivers of family members who recently died described their experience of being a family caregiver. Caregivers had a strong sense of duty to their family members and were against moving their family members into long-term care homes or hospices. Their understanding and views of HCPs’ roles affected their experiences. Caregivers also had more appreciation for life and wanted to talk about their wishes for their own death with their family members. The findings of this study can help improve the delivery of palliative care for the South Asian community and can help HCPs better support their South Asian patients and families.