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Does a Personhood and Citizenship Training Workshop Delivered to Residential Care Home Staff Have the Potential to Affect the We University of East Anglia Does a personhood and citizenship training workshop delivered to residential care home staff have the potential to affect the wellbeing of residents with dementia? Intervention development and feasibility testing of a cluster randomised controlled trial Jason Corner: School of Health Sciences Award: This thesis is submitted for the award of ‘Doctor of Philosophy’ PhD Submission date: 16th July 2020 This copy of the thesis has been supplied on condition that anyone who consults it is understood to recognise that its copyright rests with the author and that use of any information derived therefrom must be in accordance with current UK Copyright Law. In addition, any quotation or extract must include full attribution. Abstract Aim: To test the feasibility of a definitive cluster-randomised controlled trial, comparing the effect of a personhood and citizenship training intervention for care home staff, with training as usual, on the wellbeing of residents with dementia. Background: A third of people with dementia live in residential care, a sector with high staff turnover challenging the continuity of care. Most care homes provide only basic mandatory training. It is important that training interventions are robustly tested, and that outcomes are relevant to care home residents with dementia. Methods: Phase one: The PERSONABLE dementia workshop intervention was informed by four focused discussion groups consisting of residential care home staff (n=12) and family members (n=3). Subsequently, PERSONABLE was piloted with care staff (n=5) and further amendments made to the content and delivery. Phase two: Participants were (i) care home residents with dementia, and (ii) staff working in any role with at least weekly face-to-face contact with residents. Care homes were randomly allocated to (i) PERSONABLE, or (ii) training as usual. PERSONABLE comprised five reflective exercises facilitated by a mental health nurse. The primary outcome (residents) was the mean change from baseline in Dementia Care Mapping™ wellbeing/ill-being score. Secondary outcomes were recorded at the level of care home member of staff. The Personhood in Dementia Questionnaire measures staff attitudes to personhood. A perceived competence visual analogue scale assessed how able staff felt caring for residents who have dementia. Feasibility outcomes captured i) the recruitment and attrition of care homes, residents and staff members, ii) the acceptability of the intervention, iii) the acceptability of the chosen outcome measures. Results: Six care homes were recruited and a total of 40 residents and 118 staff members. Four residents were lost to follow-up. In the PERSONABLE arm 26 staff completed both baseline and follow-up measurements compared to 21 in the training as usual arm. Twenty- nine staff attended PERSONABLE, comprising 20 care workers, seven ancillary staff and two administration staff. Although it is not possible to infer effectiveness from this feasibility study, the direction of effect moved towards slightly more positive wellbeing/ill-being scores for residents allocated to the PERSONABLE arm. Discussion: Engagement of care homes, residents and staff in this trial was encouraging. Simplification of study methods may help retain sufficient staff in a definitive randomised controlled trial aiming to draw inferences about effectiveness. This study found that Dementia Care Mapping™ works effectively as an outcome measure but needs further refinement to accurately capture any possible effect of a training intervention. Acknowledgements I could not have navigated this PhD without the amazing support of my two supervisors Professor Antony Arthur and Bridget Penhale. My supervisors have provided an exceptional amount of guidance, without which the undertaking of this study would not have been possible. I would like to thank my academic peers, notably Sue Jones and Michael Woodward, our daily lunch break supervisions helped me academically but also kept me sane. My NHS manager Juniper West was extremely supportive and provided some excellent insights into the use of Dementia Care Mapping™. I am very grateful to Judith Farmer the second observer who helped me collect Dementia Care Mapping™ data in two participating care homes at follow-up. Importantly, I would like to express thanks to the residents and staff of the care homes, without who, this study would not have been possible. I would also like to thank the many academics both at the UEA and other institutions who have influenced my study, the willingness of people to share knowledge is quite humbling. On a personal level I want to thank my parents, their unwavering support is unquantifiable. My running club, both physically and socially gave me a space away from my PhD, whilst also highlighting the importance of community support. Community support takes many forms and I remain eternally grateful to my many years sober, with the support of the fellowship of Alcoholics Anonymous. And of course thanks to my daughter Georgie, my eternal motivation. 1 Table of Contents Chapter one: Thesis introduction ......................................................................................................... 12 1.1 Thesis structure .................................................................................................................. 12 1.2 The reflection of a community nurse ................................................................................. 13 1.3 Thesis overview .................................................................................................................. 14 Chapter two: Literature review ............................................................................................................ 16 2.1 Literature review structure ................................................................................................. 16 2.1.1 Search strategy: care home interventions, reflective of personhood or citizenship principles, delivered within randomised controlled trials ........................................................... 17 2.2 The resident ........................................................................................................................ 22 2.2.1 The autonomy and selfhood of people with dementia .................................................. 25 2.3 Residential care staff .......................................................................................................... 26 2.3.1 The parameters of the residential care staff role ........................................................... 27 2.4 Residential care homes ....................................................................................................... 28 2.4.1 The physical environment of the residential care home ................................................ 29 2.5 Current training .................................................................................................................. 32 2.5.1 Dementia training interventions in research ................................................................. 35 2.5.2 Quality of controlled studies testing the effect of interventions reflective of person- centred care, personhood or citizenship ..................................................................................... 40 2.6 The context of personhood and citizenship ....................................................................... 53 2.7 Personhood ......................................................................................................................... 56 2.7.1 Defining personhood ...................................................................................................... 56 2.7.2 Personhood and community .......................................................................................... 57 2.7.3 Tom Kitwood and Personhood ....................................................................................... 60 2.7.4 The critical discussion surrounding Kitwood’s ideas and research ................................ 69 2.8 Citizenship........................................................................................................................... 72 2.8.1 Defining citizenship ........................................................................................................ 73 2.8.2 The difference between citizenship and personhood .................................................... 74 2.8.3 Modelling citizenship ..................................................................................................... 77 2.8.4 Challenges to citizenship ................................................................................................ 78 2.8.5 Citizenship in research ................................................................................................... 79 2.9 Research questions ............................................................................................................. 81 2.9.1 Specific feasibility questions .......................................................................................... 81 Chapter three: Development of an intervention ................................................................................. 82 3.1 Introduction ........................................................................................................................ 82 3.2 Focused discussion groups ................................................................................................. 82 3.3 Reflective practice
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