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.

Evaluation of a scheme to enhance palliative cancer care in rural Wales

“…Only a very limited number of GPCFs presented work to external audiences out of county or within the UK during the project. Continued collaboration between GPCFs and the project evaluation team with regard to the dissemination of findings [12,15,16,11] was one way in which this issue was addressed.…”

“…In this paper, we present findings relating to the first four evaluation questions. The findings relating to the views of bereaved carers are presented elsewhere [12].…”

Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for use in economic evaluation

“…For ethical reasons, participants were not recruited within six months of bereavement 56 . It was, however, desirable that the bereavement was not too distant and so the maximum time from bereavement was two years.…”

Caring for Bereaved Family Caregivers: Analyzing the Context of Care

“…Bereaved family caregivers are at high risk for many distressing symptoms related to complex variables, such as age and gender (Brazil, Bedard, & Willison, 2002), social support (Brazil et al, 2003), available resources (Ingleton et al, 2004), and the experience of caregiving (Kris et al, 2006). A difficult caregiving trajectory was associated with poorer recovery in bereavement (Brazil et al, 2003;Gilbar & Ben-Zur, 2002;Kris et al).…”

“…In a survey of 29,292 bereaved family members who had received palliative services through the NHPCO, 18% noted a need for an improvement in the support they were offered, including an increased need for communication with families and overall coordination of care (Connor, Teno, Spence, & Smith, 2005). A survey conducted in the United Kingdom with 407 bereaved family caregivers found that only 20% had the opportunity to talk to someone from health and social services after the death of their loved ones (Ingleton et al, 2004). Organizational case studies of five English hospice bereavement services in the United Kingdom revealed that all offered information, follow-up phone calls, or letters, but none used a formal risk assessment to identify who might benefit from formal bereavement support (Reid et al, 2006).…”