Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review.
Affiliation
Department of Occupational Therapy, National Neuroscience Centre, Beaumont, Hospital , Dublin.Issue Date
2012-02-01T10:05:28Z
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Amyotroph Lateral Scler. 2012 Jan;13(1):11-24. Epub 2011 Aug 31.Journal
Amyotrophic lateral sclerosis : official publication of the World Federation of, Neurology Research Group on Motor Neuron DiseasesDOI
10.3109/17482968.2011.607500PubMed ID
21879834Abstract
Abstract Service providers and service users often have different perspectives on health and social care services. We have undertaken a systematic review of empirical data between 1988 and March 2011 relating to ALS service users' perspectives on health and social care services. Forty-seven texts were extracted and a narrative synthesis conducted. Few studies have explored ALS patients' experiences in relation to their satisfaction with services. Our review showed that ALS patients expect dignified care but they are often dissatisfied with health care services and have unmet expectations of their care. Most studies of decision-making and preferences for care have focused on end-of-life intervention. Various factors influence preferences for care from the service user perspective and people with ALS may adjust their use of services as they negotiate change. In conclusion, further research on the timeliness of services to meet changing needs of service users is required. The service user experience of allied health care services prior to end-of-life care also warrants investigation. Service providers need to support people with ALS as they negotiate feelings of acceptance and independence. Research to identify the key parameters of the ALS patient experience of services is required.Language
engISSN
1471-180X (Electronic)1471-180X (Linking)
ae974a485f413a2113503eed53cd6c53
10.3109/17482968.2011.607500
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