Currently, inpatient respite services are provided to two patient groups--those in the last year of life and those with a chronic life limiting illness. However, on closer analysis, the current model of service delivery, a two-week inpatient stay, may not be best suited to those caring for a relative in the last year of life. Similarly, it might be questioned whether an inpatient hospice is the most suitable setting for those patients needing supportive care, rather than specialist palliative care. The study has raised many issues that need to be considered in the support of carers caring for relatives with a life limiting illness with uncertain trajectories.
Of 72 papers identified, 71 were obtained and 20 were considered to meet the inclusion criteria. One paper could not be traced by library sources, due to incorrect referencing. Of the total of 20, 11 focused on needs of patients or carers; five were surveys of place of death or end-of-life care; and four were reviews of services in specific areas, which included reporting of patient and caregiver needs. The papers identified all originate from the developed world and there were no studies specifically relating to ethnic minorities. Papers Focusing on Patient and Carer Needs Eleven papers specifically examined needs of patients and carers (Table 1). Two of the four papers using survey methods arose from a demonstration project in Montana, U.s.A. (17,18). Sullivan et al. report on the responses to the final open-ended question "What have we not asked you about living with cancer that we should have asked?" (17). The 290 responses revealed a range of themes: coping, knowledge, support, interpersonal relationships, effe~t of treatment, life view, and a range of emotional concerns. The authors do not comment on whether these concerns differ from those of urban dwellers, but do suggest that health professionals consider them in the light of other work
the education programme was successful in raising standards of knowledge, professional development and confidence. Improvement was maintained one year later.
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