Background Increasing numbers of people first facing a cancer diagnosis, and many cancer survivors, are older people with significant co-morbidity. Support for these people is provided mainly by family and friends, most often by spouses, themselves often older people with health problems. Although many people prefer to be looked after and die at home this is achieved only by a minority, with carer breakdown recognised as the primary reason for crisis admissions of the dying to hospital. Understanding the support needs of older carers may help end-of-life-care and dying at home become feasible for more of those who want it.
Aims To explore end-of-life-care giving and support experiences of older people looking after someone with advanced cancer. To identify older carers priority support needs.
Methods A UK community study involving focus groups and interviews with older carers with experience of providing end of life care to someone with cancer. Participants reported their experiences of care giving and carer support. Using a modified ‘nominal group technique’, group participants recorded the most important support they received and the main problems encountered. Priorities for support of older carers generally were reached by consensus. Qualitative and descriptive quantitative data analysis was undertaken.
Results 35 older carers (56–82 years) were recruited. Five were interviewed, 30 attended a group. Findings illustrate the profound and enduring impact of care giving and show that some difficulties are accentuated in old age. While a few participants described positive end-of-life-caring experiences, most found them difficult. The participants' prioritised support needs and factors contributing to the diversity of experiences are presented, including those relating to the care dyad and those external to it, for example the accessibility and co-ordination of support.
Conclusions While our findings are reflected in research about carers of all ages, particular problems and support needs are accentuated in old age.
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