The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire
- 1 July 2008
- journal article
- Published by Hindawi Limited in Health & Social Care in the Community
- Vol. 16 (4), 419-428
- https://doi.org/10.1111/j.1365-2524.2007.00753.x
Abstract
Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.This publication has 32 references indexed in Scilit:
- What is important to measure in the last months and weeks of life?: A modified nominal group studyInternational Journal of Nursing Studies, 2006
- Depression Among Caregivers of Stroke SurvivorsStroke, 2005
- Using satisfaction to measure the quality of palliative care: a review of the literatureJournal of Advanced Nursing, 2003
- After-Death Interviews with Surrogates/Bereaved Family Members: Some Issues of ValidityJournal of Pain and Symptom Management, 2001
- ‘You do know he’s had a stroke, don’t you?’ Preparation for family care‐giving – the neglected dimensionJournal of Clinical Nursing, 2000
- A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with, and use of, services received in the year before deathJournal of Epidemiology and Community Health, 1998
- Community care for stroke patients in the last year of life: results of a national retrospective survey of surviving family, friends and officialsHealth & Social Care in the Community, 1998
- Symptom Control, Communication With Health Professionals, and Hospital Care of Stroke Patients in the Last Year of Life as Reported by Surviving Family, Friends, and OfficialsStroke, 1995
- Regional Study of Care for the Dying: methods and sample characteristicsPalliative Medicine, 1995
- A prospective study of acute cerebrovascular disease in the community: the Oxfordshire Community Stroke Project--1981-86. 2. Incidence, case fatality rates and overall outcome at one year of cerebral infarction, primary intracerebral and subarachnoid haemorrhage.Journal of Neurology, Neurosurgery & Psychiatry, 1990