title: Carer satisfaction with end-of-life care in Powys, Wales: a cross-sectional survey.
abstract: A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.
authors.affiliation: School of Nursing and Midwifery, University of Sheffield, UK. m.c.ingleton@sheffield.ac.uk
authors.forename: Christine
authors.initials: C
authors.lastname: Ingleton
authors.forename: Jana
authors.initials: J
authors.lastname: Morgan
authors.forename: Philippa
authors.initials: P
authors.lastname: Hughes
authors.forename: Bill
authors.initials: B
authors.lastname: Noble
authors.forename: Anne
authors.initials: A
authors.lastname: Evans
authors.forename: David
authors.initials: D
authors.lastname: Clark
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003258:Consumer Behavior / Q000706:statistics & numerical data*; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000451:nursing; D019035:Rural Health Services; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*; D014852:Wales