This thesis considers the provision of person-centred care (PCC) in acute healthcare. In recent years it has been increasingly recognised that healthcare should be delivered in a person-centred manner and that staff should receive training and support in relation to this. There is a growing body of literature investigating the potential benefits of PCC in relation to both patient and service level outcomes. Paper one of this thesis is a systematic review of the literature examining staff training interventions for improving PCC in acute healthcare settings. The findings offer preliminary support for the positive impact of such training interventions on patient and service level outcomes in hospital environments. The research in this area is not of a uniformly high standard and this paper concludes that further research in this area is required. Paper two is an examination of a modified version of Dementia Care Mapping (Care Mapping – Neurorehabilitation: DCM-NR), an observational tool for measuring and improving PCC. Results provide evidence of the feasibility and validity of DCM-NR in a range of Clinical Neuroscience settings. Future research should examine the impact of DCM-NR on person-centred practices over time.The critical reflection paper considers both the systematic review and the empirical study. It aims to consider both the strengths and limitations of the research, challenges encountered, clinical implications and highlights areas for future research.

Background. Paper I: Published guidelines and policies continually promote the importance of increasing service-user involvement in health care services. Q-methodology has become a popular method for revealing the subjective perspectives of patients who use health services, yet there is currently no review considering the potential issues of using Q-methodology with clinical populations. Paper II: Measuring the quality of care for people using neurorehabilitation services is a complex area requiring reliable methods. Dementia Care Mapping (DCM) is used widely in dementia care settings to help improve person-centred care and with appropriate evaluation may be usefully applied to neurorehabilitation settings. Aims. Paper I [literature review] examined studies which used Q-methodology with clinical populations, with a particular emphasis on the potential adaptations required to ensure its reliable use. Paper II [research study] explored the acceptability views of staff and patients for the pilot use of DCM in a neurorehabilitation setting. Paper III attempted to critically appraise these papers, as well as the research process overall. Methods. Paper I reviewed 29 studies, published over a 20-year period, using a narrative synthesis. Paper II conducted DCM on an acute neurorehabilitation ward, and evaluated the acceptability of DCM using Q-methodology with 23 staff and 10 patients on the ward. Results. Paper I identified a number of considerations for the effective application of Q-methodology with clinical populations. Paper II, reporting on the factor analysis, indicated a 'consensus' viewpoint, where all participants indicated positive acceptability for the use of DCM in a neurorehabilitation setting, with additional factors indicating some potential changes to the tool for increasing acceptability in the future. Paper II also indicated the potential for Q-methodology to be useful with a neurorehabilitation in-patient population. Conclusion. Paper I indicated the potential worth of Q-methodology for use with clinical populations. It also indicated guidelines which researchers might consider when using this method with clinical populations in the future. Paper II revealed promising results for the acceptability of DCM in a neurorehabilitation setting, though further research is required to explore this further. It also confirmed the value of Q-methodology with patients within a neurorehabilitation setting, similarly to those in Paper I. Paper III explored the relevance of Papers I and II in adding to the literature independently, but also the unequivocal link regarding the use of Q-methodology with clinical populations.

京都大学 / 0048 / 新制・課程博士 / 博士(社会健康医学) / 甲第22382号 / 社医博第104号 / 新制||社||医11(附属図書館) / 京都大学大学院医学研究科社会健康医学系専攻 / (主査)教授 川上 浩司, 教授 髙橋 良輔, 教授 中山 健夫 / 学位規則第4条第1項該当 / Doctor of Public Health / Kyoto University / DFAM

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Background: Dementia progression is an active subject in Sweden and the world, that makes it more than important for nurses to adjust the work and care to these patients. Nurses have a responsibility, to keep the care personal to the patient’s needs, but also keeping the care patient safe by following related laws. Patients who have dementia or a relative to a patient with dementia describes the importance of the help the nurses bring when they meet each other in different environments. Aim: The aim of this study is to describe nurses’ experiences of caring for patients with dementia. Method: A literature review based of on Friberg, with an analysis of 11 qualitative articles and 2 quantitative articles. Results: The analysis showed 4 subjects, the importance of knowledge, the importance of communication, the importance of person-centered care and lastly the importance of recourses in the care environment. Conclusion: The connections that got made was mainly about how communication needed more experience than what the nurses had. Different methods were used to make sure the care that was given to the patients are safe and person-centered, but also costume made or the patient’s own needs and diagnosis, this was something that the nurses found inadequate. The effects from the workload made obstacles for the nurses while giving care to patients, because of that the necessary recourses needed to be available for the nurses to ease the care work for both patients and their relatives. When nurses had different aspects about the dementia care environment it related to what patients and relatives experienced, both similarities and differences.

Parkinson’s disease (PD) is frequently compounded by neruropsychiatric complications, increasing disability. The combined effect of motor and mental status on care-dependency in PD outpatients is not well characterized. We conducted a cross-sectional study of 1449 PD outpatients. The assessment comprised the Montgomery–Asberg Depression Rating Scale (MADRS) and the diagnostic criteria for dementia. PD severity and treatment complications were rated using Hoehn and Yahr staging and the Unified Parkinson’s Disease Rating Scale (UPDRS) IV. The acknowledged level of care-dependency was documented. Care-dependency was present in 18.3% of all patients. A total of 13.9% had dementia, 18.8% had depression, and 14.3% had both. Regression analyses revealed increasing effects of age, PD duration, and PD severity on care-dependency in all three mental-disorder subgroups with the strongest effects in patients with depression only. Depressed patients with antidepressive treatment still had significantly higher PD severity, higher MADRS and UPDRS-IV scores but were not more likely to be care-dependent than non-depressed patients. Older age, longer duration and increased severity of PD contribute to care-dependency in patients with untreated depression. Treatment of depression is associated with lower rates of care-dependency.

Information Technology (IT) plays a vital role in improving health care systems by enhancing the quality, efficiency, safety, security, collaboration and informing decision making. Dementia, a decline in mental ability which affects memory, concentration and perception, is a key issue in health and social care, given the current context of an aging population. The quality of dementia care is noted as an international area of concern. Dementia Care Mapping (DCM) is a systematic observational framework for assessing and improving dementia care quality. DCM has been used as both a research and practice development tool internationally. However, despite the success of DCM and the annual generation of a huge amount of data on dementia care quality, it lacks a governance framework, based on modern IT solutions for data management, such a framework would provide the organisations using DCM a systematic way of storing, retrieving and comparing data over time, to monitor progress or trends in care quality. Data Governance (DG) refers to the implications of policies and accountabilities to data management in an organisation. The data management procedure includes availability, usability, quality, integrity, and security of the organisation data according to their users and requirements. This novel multidisciplinary study proposes a comprehensive solution for governing the DCM data by introducing a data management framework based on a data warehousing approach. Original contributions have been made through the design and development of a data management framework, describing the DCM international database design and DCM data warehouse architecture. These data repositories will provide the acquisition and storage solutions for DCM data. The designed DCM data warehouse facilitates various analytical applications to be applied for multidimensional analysis. Different queries are applied to demonstrate the DCM data warehouse functionality. A case study is also presented to explain the clustering technique applied to the DCM data. The performance of the DCM data governance framework is demonstrated in this case study related to data clustering results. Results are encouraging and open up discussion for further analysis.

Background: The Public Health Agency of Canada published a strategic document recognising the elements associated with person-centred dementia care, including interactions with stakeholders and research mandates. One essential element identified was advanced therapies, containing non-pharmacological interventions, such as creative arts-based interventions. Objective: This thesis investigates the impact of creative arts-based interventions on individuals with dementia, living in residential care through a scoping review (ScR) and a mixed-methods systematic review (MMSR). Methods: The ScR surveyed the current literature base to identify which creative arts-based interventions improved the personhood, quality of life and well-being of persons with dementia (PwD); five studies were included. The MMSR explored the impact of dance interventions on the symptoms of dementia on persons with Alzheimer’s disease and related dementias, as dance was unrepresented in the ScR; three studies were included. Both reviews were narratively synthesized due to the heterogeneity in the results. Results: Each included study spoke of the impact the creative arts had on the PwD and which element(s) of their health improved. Results also showed that the creative arts were beneficial for the personhood of the PwD (ScR) and for decreasing symptoms while promoting the person (MMSR). Conclusion: We must continue to look past the condition and recognize that creativity, psychosocial needs, and creative arts are all interconnected in promoting the personhood of PwD. Creative arts-based interventions can be designed to promote the individual creativity of the person and showcase their intact abilities.

Background: There is significant concern about nurse burnout in nursing homes. There has been little research to investigate whether training in person-centred care and supervision can reduce nursing home nurses’ burnout. Aims: To adapt training to be suitable for nursing home nurses and evaluate the impact of training and supervision on burnout and related outcomes. Study Design: Focus groups with nursing home nurses were used to inform adaptation of the training. Mixed methods were used to evaluate the impact of training and supervision employing a convergent parallel design, including a Randomised Controlled Trial with quantitative measures (primary outcome measure: the Maslach Burnout Inventory) to assess effectiveness and exploration of subjective experience using qualitative interviews. The findings of the RCT and qualitative interviews were then compared to determine the convergences and divergences. Findings: The training was adapted to include content on leadership and stress management. Hypotheses that the interventions would reduce burnout and impact on other quantitative outcomes were not supported. Qualitative interviews with nursing home nurses about training indicated that the nurses reported reduced burnout, enhanced self-efficacy, reduced isolation, better team working, more informed person centred dementia care and enhanced leadership. Nurses’ views on the impact of supervision included a range of benefits. There was convergence between quantitative measurement and subjective experience indicting significant levels of burnout, but divergence in terms of the impact of training in person-centred care and supervision. Conclusions: My study demonstrates that burnout is a significant issue for nursing home nurses in the UK. There was divergence in my findings in terms of the impact of training in person-centred care and supervision. The hypotheses about training and supervision having positive impact on burn-out were rejected. However, the qualitative findings suggest that nursing home nurses experienced positive benefits from the person-centred training and supervision, in particular on their sense of burnout, their approach to care and leadership skills. Recommendations are made regarding research, training and policy to address burnout in nursing home nurses. / Burdett Charitable Trust of Nursing