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Co-Designing End-of-Life Care for People With Pre-Existing Severe Mental Illness: Insights From Multiple Stakeholder
Jialiang Cui1, Cong Zheng1, Cheryl Chi-Yan Yeung2
1Department of Social Work, The Chinese University of Hong Kong, Hong Kong SAR, China.
Abstract:
People with severe mental illness (SMI) experience significant health disparities, and their end-of-life care remains underdeveloped. Employing a co-design approach, this study engaged a range of stakeholders in Hong Kong, including people with SMI, their family members and professionals in mental health and palliative care, to identify service gaps, challenges and opportunities for improving end-of-life care for this population. Findings highlighted the suboptimal state of end-of-life care for people with SMI and the underlying challenges at individual, organisational and community levels, including limited knowledge of end-of-life care, low help-seeking motivation, communication difficulties, limited support networks, insufficient on-site medical support for end-of-life care, unclear guidelines for dying-in-place, inadequate collaboration between medical and social sectors, mental health stigma, insufficient legal support and cultural taboo surrounding death. Recommendations were co-developed with participants to inform the design of person-centred, contextually responsive models that promote equitable and dignified end-of-life care for people with SMI.
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