title: Evaluation of advanced home care (AHC). The next-of-kin's experiences.
abstract: This project studied next-of-kin's experiences of advanced home care (AHC) during the palliative care and death of a family member. The aim of the study was to evaluate how next-of-kin experienced information provided, care, symptom relief, and care-giving burden. A self-questionnaire with 24 questions was sent to all next-of-kin (n=82) who had had a family member cared for at home during one year. Seventy-five (91%) responded. Next-of-kin were generally more satisfied with emotional support and care than with information provided. Symptom relief was sufficient in most cases. Next-of-kin's experiences of burden were: 45% felt homebound, 26% felt isolated at home and 51% reported a sleep deficit. Women felt homebound (P<0.01) to a higher degree than men. However, 87% stated that they would choose AHC again, in a similar situation. AHC provided 'quite good' symptom relief and 'good' emotional support to patients and their next-of-kin during the terminal phase leading to death. Information provided needs to be improved and the situation and needs of informal caregivers requires more assessment.
authors.affiliation: Kronparkens sjukhem, Eva Lagerwalls väg 1, SE- 756 43 Uppsala, Sweden. Britta.Roliison@go.uppsala.se
authors.forename: Britta
authors.initials: B
authors.lastname: Rollison
authors.forename: Maria
authors.initials: M
authors.lastname: Carlsson