The lived experiences of the Sikh population of South East England when caring for a dying relative at home.
BACKGROUND
Few ethnic minorities access specialist palliative care (SPC) services when caring for a dying relative at home.


OBJECTIVE
This project aimed to explore and understand the experiences of the Sikh population of south east England when caring for a dying relative at home without support from SPC.


METHODS
Six semi-structured interviews were conducted with carers in Punjabi or English and the transcripts were analysed using interpretative phenomenology.


RESULTS
Five super-ordinate themes were identified: factors leading to the caring role, emotional effects of caring on the carer, impact of caring on the wider family, influence of health-care services, and religious and cultural influence. The most common emergent theme was lack of support from health professionals, which emerged from a lack of awareness of services. A sense of duty and hard work was apparent throughout, and appeared to sustain the family. There seemed to be a sense of duty to care for the relative at home. Financial concerns were expressed frequently. The decision to adopt the caring role appeared to be made by the entire family. The Sikh faith seemed to give strength to carers. There appeared to be heightened awareness of what other community members think of carers' actions.


CONCLUSIONS
There is a need for health professionals to reach out to this population to increase awareness of and trust in the services that are available to support care at the end of life. However, an unwillingness to accept assistance may persist in some cases.
Advanced Nurse Practitioner, Home Care Team and Day Therapy Unit, Ellenor Lions Hospices, Cold Harbour Road, Gravesend DA11 7HQ, England.
Margaret Mary
MM
Cowan
D000328:Adult; D000368:Aged; D001293:Attitude to Death / Q000208:ethnology*; D017028:Caregivers / Q000941:ethics* / Q000523:psychology*; D003466:Cultural Characteristics; D004739:England / Q000453:epidemiology; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007194:India / Q000208:ethnology; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D028681:Moral Obligations; D010166:Palliative Care / Q000941:ethics* / Q000458:organization & administration / Q000523:psychology*; D036301:Qualitative Research; D012068:Religion and Medicine