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Advance care planning (ACP) supports communication and medical decision-making and is best conceptualized as part of the care planning continuum. Black older adults have lower ACP engagement and poorer quality of care in serious illness. Surrogates are essential to effective ACP but are rarely integrated in care planning. Our objective was to describe readiness, barriers, and facilitators of ACP among seriously ill Black older adults and their surrogates.
Methods
We used an explanatory sequential mixed methods study design. The setting was 2 ambulatory specialty clinics of an academic medical center and 1 community church in Northern California, USA. Participants included older adults and surrogates. Older adults were aged 60+, self-identified as Black, and had received care at 1 of the 2 clinics or were a member of the church congregation. Surrogates were aged 18+ and could potentially make medical decisions for the older adult. The validated ACP engagement survey was used to assess confidence and readiness for ACP. What “matters most” and barriers and facilitators to ACP employed questions from established ACP materials and trials. Semi-structured interviews were conducted after surveys to further explain survey results.
Results
Older adults (N = 30) and surrogates (N = 12) were confident that they could engage in ACP (4.1 and 4.7 out of 5), but many were not ready for these conversations (3.1 and 3.9 out of 5). A framework with 4 themes – illness experience, social connections, interaction with health providers, burden – supports identification of barriers and facilitators to ACP engagement.
Significance of results
We identified barriers and facilitators and present a framework to support ACP engagement. Future research can assess the impact of this framework on communication and decision-making.
Maternity outcomes for women from certain ethnic groups are notably poor, partly owing to their not receiving treatment from services.
Aims
To explore barriers to access among Black and south Asian women with perinatal mental health problems who did not access perinatal mental health services and suggestions for improvements, and to map findings on to the perinatal care pathway.
Method
Semi-structured interviews were conducted in 2020 and 2021 in the UK. Data were analysed using the framework method.
Results
Twenty-three women were interviewed, and various barriers were identified, including limited awareness of services, fear of child removal, stigma and unresponsiveness of perinatal mental health services. Whereas most barriers were related to access, fear of child removal, remote appointments and mask-wearing during COVID-19 affected the whole pathway. Recommendations include service promotion, screening and enhanced cultural understanding.
Conclusions
Women in this study, an underrepresented population in published literature, face societal, cultural, organisational and individual barriers that affect different aspects of the perinatal pathway.
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