Survey of speech and language therapy provision for people with Parkinson's disease in the United Kingdom: Patients' and carers' perspectives

Miller, Nick, Noble, Emma, Jones, Diana, Deane, Katherine ORCID: https://orcid.org/0000-0002-0805-2708 and Gibb, Catherine (2011) Survey of speech and language therapy provision for people with Parkinson's disease in the United Kingdom: Patients' and carers' perspectives. International Journal of Language and Communication Disorders, 46 (2). pp. 179-188. ISSN 1368-2822

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Abstract

Background: Communication and swallowing changes are prominent in Parkinson's disease, but there remains a lack of information regarding the experiences and expectations of people with Parkinson's disease in respect of speech-language therapy (SLT) services. Aims: To conduct a survey of people with Parkinson's disease and their carers in the United Kingdom to elicit their views concerning communication and swallowing changes in Parkinson's disease and the support they envisage in helping with these changes. Methods & Procedures: A national survey utilizing a questionnaire developed for the project, accessible by people with Parkinson's disease in web-based, e-mail or paper forms. Outcomes & Results: A total of 168 people with Parkinson's disease (median = 7 years since diagnosis, range = 0.5-30) and 47 carers who provided their impression of the experience of the PwPD responded. Of these 215, 92 (43%) had no contact with SLT services. In general those who had seen an SLT found it a positive experience. Pointers for improvement centred around timing, intensity, duration and access to SLT as well as issues around transfer and maintenance of gains outside of clinic and (lack of) attention to psychosocial dimensions. Availability of ongoing support as the situation evolved and access to SLT when it was needed were two prominent features desired of a responsive service. Conclusions & Implications: Responses suggest that when SLT is available it offers positive support, but respondents felt (re)access when and where SLT is needed could improve, as well as what aspects of swallowing and communication were addressed in assessment and therapy. We reflect on possible recommendations to address the challenges for SLT services in considering organization and content of provision.

Item Type: Article
Faculty \ School: Faculty of Medicine and Health Sciences > School of Nursing and Midwifery (former - to 2011)
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Community and Family Health (former - to 2017)
Faculty of Medicine and Health Sciences > Research Groups > Health in Later Life (former - to 2017)
Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Depositing User: Rhiannon Harvey
Date Deposited: 11 Apr 2011 11:59
Last Modified: 09 Apr 2024 09:30
URI: https://ueaeprints.uea.ac.uk/id/eprint/28799
DOI: 10.3109/13682822.2010.484850

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