The purpose of the research was to trial out the development and initial feasibility stages of an evaluation of life story work for people with dementia. The research was carried out between July 2012 and March 2015. People with dementia were involved in several stages of the project: Stage Involvement of people with dementia As advisers As participants Systematic review of the Gave views and talked about n/a existing literature to produce a experiences of life story work narrative synthesis of good which informed the search and practice and theories of change data extraction Qualitative focus groups with Advised on ethical issues 25 people with dementia (and people with dementia, family involved in running focus others) took part in focus carers and professionals who groups with people with groups to explore good practice use life story work dementia Advised on the development of information sheets and consent forms Validated focus group findings Feasibility study to test Advised on the development of 39 people with dementia took processes and information sheets and consent part by completing quality-of-life instruments measures at several time points 10 people gave qualitative feedback about their life story books Findings from the research are reported elsewhere (Gridley et al., 2016). This paper considers the involvement of people with dementia both in an advisory capacity, and as participants in the qualitative study and the feasibility study. Involving people with dementia in research Involving people in research that is about them has become an important principle in health research. Guidance from INVOLVE, an advisory group funded by NIHR that supports active public involvement in health and social care research, advises that: 'It is a core democratic principle that people who are affected by research have a right to have a say in what and how publicly-funded research is undertaken. Public involvement is an intrinsic part of citizenship, public accountability and transparency. In addition, public involvement in research can lead to empowering people who use health and social care services, providing a route to influencing change and improvement in issues which concern people most' INVOLVE (2012, p8) Public involvement in research can both improve the research and also lead to empowerment of those involved. This is particularly important for groups which have
The purpose of the research was to out the development and initial feasibility stages of an evaluation of life story work for people with dementia. The research was carried out between July 2012 and March 2015. People with dementia were involved in several stages of the project: Stage Involvement of people with dementia As advisers As participants Systematic review of the existing literature to produce a narrative synthesis of good practice and theories of change Gave views and talked about experiences of life story work which informed the search and data extraction n/a Qualitative focus groups with people with dementia, family carers and professionals who use life story work Advised on ethical issues involved in running focus groups with people with dementia Advised on the development of information sheets and consent forms Validated focus group findings 25 people with dementia (and others) took part in focus groups to explore good practice Feasibility study to test processes and instruments Advised on the development of information sheets and consent 39 people with dementia took part by completing quality-of-life measures at several time points 10 people gave qualitative feedback about their life story books Findings from the research are reported elsewhere (Gridley et al., 2016). This paper considers the involvement of people with dementia both in an advisory capacity, and as participants in the qualitative study and the feasibility study. Involving people with dementia in research Involving people in research that is about them has become an important principle in health research. Guidance from INVOLVE, an advisory group funded by NIHR that supports active public involvement in health and social care research, advises that: 'It is a core democratic principle that people who are affected by research have a right to have a say in what and how publicly-funded research is undertaken. Public involvement is an intrinsic part of citizenship, public accountability and transparency. In addition, public involvement in research can lead to empowering people who use health and social care services, providing a route to influencing change and improvement in issues which concern people most' INVOLVE (2012, p8) Public involvement in research can both improve the research and also lead to empowerment of those involved. This is particularly important for groups which have trial
Brooks%20et%20al%20Removing%20the%20Gag%20%28ACCEPTED%20-%20pre-print%29.docx