Absolutely fabulous—But are we? Carers’ perspectives on satisfaction with a palliative homecare service

Abstract

People with terminal diagnoses are increasingly encouraged to stay at home for the trajectory of their illness. Consequently, relatives and friends are progressively undertaking the informal carer role more frequently in conjunction with formal palliative care teams. Although there is international literature on the efficacy of and satisfaction with publicly funded palliative homecare, to date, there is scant literature reporting satisfaction with privately funded palliative homecare especially in Australia. Survey and focus group methods were used to explore carers’ levels of satisfaction with a private Australian palliative homecare service and to uncover unmet carer needs. There were 300 (41.7%) responses to the survey. Three focus groups were conducted, separately comprising current carers, past carers and palliative homecare staff. While there was a high level of satisfaction with the service generally, carers identified a lack of knowledge about aspects of the illness and treatment course. A desire to have time with nursing staff independent of the patient, including continued contact after the death of the patient, was also expressed. Themes relating to service delivery concerned lack of continuity of attending nursing staff and a perceived inadequate number of service visits. These findings were similar to results reported in the literature for publicly funded services. Therefore interventions used in the public sector to meet carer needs are likely to be successful if applied in the private sector.