7.9.1 The residential care of persons with Parkinson’s Disease: A systematic review (317)

Lucy Ziegler, Research Fellow, Department of Health Studies, University of Bradford, Bradford, United Kingdom Co authors: Gerry Armitage & Rob Newell

Abstract:

Background:

Many of those who suffer from Parkinson’s disease (PD) will have received considerable support from their close relatives. However, the progression of PD will often demand some form of residential care. There is little knowledge about the level and nature of input from informal carers, even though their potential contribution could be significant.

Objectives:

Confirm the needs of persons with PD in residential care, and their informal carers’ perspectives on this care to establish whether their input could be beneficial. Determine whether the specialised needs of person’s with PD are addressed in residential care.

Methods:

A systematic review of 13 electronic databases was undertaken using a carefully structured search strategy. Hand searching of relevant journals and of grey literature was also undertaken. The extent to which each paper fulfilled the inclusion and exclusion criteria were determined by two independent reviewers. A quality grade was assigned to each paper included in the review, and then independently verified by a third reviewer.

Results:

Of the 157 studies retrieved 48 papers were subjected to detailed review, data extraction and quality grading. 26 papers successfully fulfilled the inclusion criteria and were included in the review.

Conclusions:

The complexity of PD presents particular demands for informal carers but gives them considerable expertise which is likely to be helpful to formal carers if the person with PD is admitted to residential care. Exploratory, descriptive research is necessary to establish the conceptual foundations of informal carers’ perspectives and how these compare to the provision of residential care.

Biography:

Lucy Ziegler is a Research Fellow at the University of Bradford. She has an interest in the psycho-social consequences and causes of chronic disease and research methods. Her current work involves a project funded by the Parkinson's Disease Society to undertake interviews with relatives of people with Parkinson's Disease living in residential care and a project funded by Macmillan Cancer research to explore the value of an expert patient in supporting and advising head and neck cancer patients both before during and after treatment. Employment 2006 – Present Research Fellow (Grade 8) School of Health Studies, University of Bradford 2003 - 2006 Part time Lecturer and Academic Supervisor 2002 – 2003 Research Officer School of Health Studies, University of Bradford 2001 – 2002 Senior Systematic Reviewer Huddersfield and Calderdale NHS Trust, Huddersfield 2000-2001 Senior Systematic Reviewers Researcher Centre for Evidence-based Healthcare, University of Huddersfield.