Palliative care services: views of terminally ill patients

Expectations to and evaluation of a palliative home-care team as seen by patients and carers

“…The participants in both studies were interviewed while home care was ongoing; therefore, the studies cannot be regarded as true expectation studies, as the participants' expectations must have been influenced by what the home-care team offered. Evaluation studies were commoner: five focussed on patients [4,5,56,58,60], ten on carers [7,17,21,29,[45][46][47][48][49]54] and six on patients and carers [24,26,28,30,33,41]. We did not identify any prospective, longitudinal studies focussing on expectations and evaluation of palliative home care.…”

“…Papers regarding evaluation of palliative care have focussed on symptom control [19, 23-26, 64, 65], quality of life [6,19,23,25,59,65], 'quality of death' [25,55], satisfaction with care [19, 23-25, 35, 45, 68], help to carers [22], use of health resources [19,23,28] and participants' experiences with care [4,17,30,32,33,47,57,58,60]. Studies specifically focussing on palliative home care have additionally focussed on place of death [3,18,55,66], reasons for hospitalisation despite palliative home care [5,9,27] and carers' experiences of caring for a patient at home [7,21,29,41,46,48,54,56,61,67].…”

Striving for independence: experiences and needs of service users with life limiting conditions

“…2005:52). There has been a focus on service users’ needs but this has again been largely oriented to evaluating existing services (Raynes et al. 2000, Seymour et al.…”

Perceptions of terminally ill patients and family members regarding home and hospice as places of care at the end of life

“…Terminally ill patients, independent of the place of residence, seem to be concerned to ease the burden of family caregivers (Raynes et al . 2000; Gott et al .…”

“…The scant literature reveals that terminally ill patients are irritated by several aspects of hospital visits and stays (Raynes et al 2000;Addington-Hall & O'Callaghan 2009), value living at home, especially due to the possibility of continuing everyday life together with family and friends (Appelin & Berterö 2004), and at the same time are eager to ease the burden on their family (Raynes et al 2000;Proot et al 2004;Kaldjian et al 2009). Furthermore, terminally ill patients want to be in control of their own life and health care and things related to those they love (Proot et al 2004).…”