Exploring the spiritual needs and the use of a measure of spiritual wellbeing with people with people from ethnic minority communities

Exploring spiritual needs and the use of a measure of spiritual wellbeing with people from ethnic minority communities living with a terminal illness.
The World Health Organisation (WHO) defines palliative care as "an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness through prevention and relief of suffering" (WHO, 2020). Palliative care aims to encompass the spiritual needs of patients alongside the physical and psychosocial components, with both spirituality and religion highlighted as playing an important role in coping with terminal illness (Austin, Macdonald & MacLeod, 2018). However, despite emerging evidence, spiritual care remains an under-researched dimension of palliative care, and less well-provided. Valid measures and assessments may be useful to support spiritual and religious interventions, including addressing spiritual well-being and concerns for people receiving palliative care, including in research studies (Damberg Nissen et al., 2020).
In the UK, people from minority ethnic backgrounds are under-represented as users of specialist palliative care services (Markham, Islam & Faull, 2014). UK research into unmet needs and disparities in palliative care, including the provision of spiritual care, is limited. The EORTC QLQ-SWB32 measure of spiritual well-being for people receiving palliative care (SWB32) was validated internationally with 451 people in 14 countries, but with low participation rates from minority groups within countries (Vivat et al., 2017).
For this project, the researcher will contact organisations providing care for people with terminal conditions in four different areas of London: North East, North West, East and South East. The project will recruit participants from minority ethnic communities living with terminal illness via these organisations, and will explore the use and suitability of the SWB32 with these participants , utilising semi-structured interviewing to investigate the use of the SWB32 for discussions exploring their spiritual needs and well-being, and ethnographic techniques to explore the wider context and situations in which they are living and receiving care.
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