Research project
Title: A qualitative study to explore positive and negative aspects of long-term care settings as experienced by residents with dementia, their family and statutory carers.
Project timescale: From 01 February, 2001 to 01 April, 2003
(Added to website on: 21 June, 2002 - Date last updated: 20 April, 2007)
Source of funding:
Alzheimer's Society
Aims: To identify whether or not the experiences and opinions of the three groups vary between the different settings included in the study. To make new information available on the areas of agreement and disagreement between the three groups and identfiy factors which promote or hinder positive partnerships between paid staff, family members and people with dementia in long term care.
Research designs used:
Study of views/experiences
Methods used to collect data:
Interviews
Research project description: The research topic was identified by applicant steming directly from own experiences of caring for husband - a GP who developed Alzheimer's 15 years ago in his 50's - now in long term care. Semi-structured interviews with family members, paid staff and people with dementia in 10 different care settings: residential, specialist nursing and generic as in NHS, local authority and private sectors in inner London and suburban Essex. N=68. Interviews taped, transcribed, analysed, first by hand, then entered on NUD*ist database to assist in indexing data under themes.
Stages at which the public were involved:
Analysing the research
Writing about the research eg
publications, newsletters
Prioritising topic areas
Disseminating research
Planning the research
Managing the research
Designing the research instruments
(eg questionnaires, patient information sheets)
Undertaking the research
Description of public involvement in research stages: As member of QRD consumer network involved at all stages of research - this project is the first where Alzheimer's Society has actually funded a carer to carry out a study as main applicant. As funding has to go through an academic institution, the project is teamed up with Dr Livingston, Consultant Psychiatrist at UCL.
Training and support provided for either members of the public or researchers involved in the project:
Examples of ways the public have made a difference to the research project: Alzheimer's Society consumer network reviewed initial applications and made suggestions. Three consumers were on Awards Panel and the 2 QRD consumers on Steering Committee advised on protocol, interview guide and with ideas for dissemination. Since completion the consumer applicant, Shirley Nurock, has been very active disseminating findings all over the UK. 3 Major conferences on Dementia 2 seminars organised by NHS Trusts Alzheimer's Society Annual General Meeting 2003 workshops 2 Alzheimer's Society branch Annual General Meetings 2 Public Meetings organised by carers forums Consumers in NHS Research Conference 2002 This is the sort of activity clinicians, researchers and academics are usually unwilling to undertake, but coming from the 'involved consumer' seems to make more of an impact.
Evaluating the impact of public involvement in the research:
Details of publications or reports resulting from the research: A qualitative study of the experiences of long-term care for residents with dementia, their relatives and staff (2005). Train, G.H., Nurock, S.A., Manela, M., Kitchen, G., Livingston, G.A. in Ageing & Mental Health. March 2005. 9(2): 119-128. Routledge. A qualitative study of the views of residents with dementia, their relatives and staff about work practice in long-term care settings. Train, G., Nurock, S., Kitchen, G., Manela, M., and Livingstone, G. in International Psychogeriatrics (2005), 17:2, 237-251. (updated 22/08/05) Further articles are planned for journals in dementia, social care, nursing, health and the Alzheimer's Society Newsletter.
Was/is your project user controlled: Not Known
For further information on the project, please contact:
Mrs Shirley Nurock
Applicant and Assistant Researcher
s_nurock@hotmail.com
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