Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review.

Hdl Handle:
http://hdl.handle.net/10147/207351
Title:
Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review.
Authors:
Foley, Geraldine; Timonen, Virpi; Hardiman, Orla
Affiliation:
Department of Occupational Therapy, National Neuroscience Centre, Beaumont, Hospital , Dublin.
Citation:
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 Diseases
Issue Date:
1-Feb-2012
URI:
http://hdl.handle.net/10147/207351
DOI:
10.3109/17482968.2011.607500
PubMed ID:
21879834
Abstract:
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:
eng
ISSN:
1471-180X (Electronic); 1471-180X (Linking)

Full metadata record

DC FieldValue Language
dc.contributor.authorFoley, Geraldineen_GB
dc.contributor.authorTimonen, Virpien_GB
dc.contributor.authorHardiman, Orlaen_GB
dc.date.accessioned2012-02-01T10:05:28Z-
dc.date.available2012-02-01T10:05:28Z-
dc.date.issued2012-02-01T10:05:28Z-
dc.identifier.citationAmyotroph Lateral Scler. 2012 Jan;13(1):11-24. Epub 2011 Aug 31.en_GB
dc.identifier.issn1471-180X (Electronic)en_GB
dc.identifier.issn1471-180X (Linking)en_GB
dc.identifier.pmid21879834en_GB
dc.identifier.doi10.3109/17482968.2011.607500en_GB
dc.identifier.urihttp://hdl.handle.net/10147/207351-
dc.description.abstractAbstract 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.en_GB
dc.language.isoengen_GB
dc.titlePatients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review.en_GB
dc.contributor.departmentDepartment of Occupational Therapy, National Neuroscience Centre, Beaumont, Hospital , Dublin.en_GB
dc.identifier.journalAmyotrophic lateral sclerosis : official publication of the World Federation of, Neurology Research Group on Motor Neuron Diseasesen_GB
dc.description.provinceLeinster-
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