京都大学 / 0048 / 新制・論文博士 / 博士(社会健康医学) / 乙第13358号 / 論社医博第15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 小川 修, 教授 松村 由美 / 学位規則第4条第2項該当 / Doctor of Public Health / Kyoto University / DFAM

京都大学 / 新制・課程博士 / 博士(社会健康医学) / 甲第23612号 / 社医博第118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 近藤 尚己, 教授 伊佐 正, 教授 髙橋 良輔 / 学位規則第4条第1項該当 / Doctor of Public Health / Kyoto University / DFAM

My thesis examines patients’ and caregivers’ perspectives on educating healthcare providers(HCPs). Specifically, it examined two research questions: 1) What do patients think about their involvement in the education of HCPs? and 2) What roles do patients want to have in the education of HCPs? It is important for educational leaders and HCPs to understand answers to these questions, from patients’ own perspectives, to make effective changes in current and future health professions education and ultimately, the delivery of patient-centred care. I conducted semi-structured interviews with 27 patients and caregivers for this study. Through conventional content analysis, I identified five themes for what patients think about their involvement in the education of HCPs. Namely, patient involvement in the education of HCPs: (1) is challenging because of power-differentials between themselves and HCPs; (2) requires patient training; (3) needs to start early in HCPs’ education process; (4) can improve patient-HCP partnerships; and (5) requires compensation for patients. I also identified three roles that patients want to have in the education of HCPs. Specifically, they want to: (1) teach HCPs about patients’ expectations, experiences, and perspectives through case studies, storytelling, and research; (2) provide direct feedback to HCPs; and (3) advise on curricula development and admission boards for HCPs. My research adds to the limited research on patients’ and caregivers’ perspectives on their involvement in the education of HCPs, identifies barriers to patient involvement, and provides a foundation that HCPs and educational leaders can use to improve patients’ active involvement in the education of HCPs. Further, it highlights that patients’ voices are important to the education of HCPs. It also illuminates my own perspectives on patient involvement in the education of HCPs, which I share as part of my positionality as a researcher who conducted this study.

Dagens patient står idag inför svåra val av behandlingar och vård. Det är därför viktigt att patienten ges möjlighet att hantera det dagliga livets krav och att sjuksköterskan stödjer och stärker patientens kontroll över sjukdom och behandling. Patientundervisning är av central betydelse och bör integreras i den dagliga omvårdnaden av patienten och dennes anhöriga. Föreliggande studie syftar därför till att studera de faktorer som påverkar sjuksköterskans roll i patientundervisningen och hur Internet kan integreras i undervisningen. Teoretisk ram för arbetet är Hildegard Peplaus terapeutiska interpersonella process. För att besvara frågeställningarna har en litteraturstudie genomförts, vilket har medfört en kritisk granskning och sammanvägning av resultat från tio vetenskapliga artiklar. Resultatet visar på att sjuksköterskan inte alltid har den kunskap som behövs för att bedriva bra patientundervisning och att mer utbildning krävs för att kunna genomföra undervisningen på bästa tänkbara sätt. Med dagens tekniska utveckling kan Internet med sin lättillgängliga information fungera som ett ypperligt hjälpmedel vid patientundervisning. / Todays patients face difficulties in choosing between methods of treatment and care. Therefore it is very important that nurses give the patient an opportunity to handle their daily life and support them in their choises. Patient education is of central importance and should be integrated in the daily care of patients and their relatives. This literature review aims to investigate the factors that influence the nurse role in patient education and in what way Internet can be used. Peplau’s theory of Interpersonal relations underlie this study. The sudy is based on the results of ten scientific publications. The results indicate that nurses not always have enough knowledge to provide good patient education. More education is needed in the nursing education programme. With todays technical evolution Internet can function as an excellent tool in patient education.

Background: Parkinson's disease [PD] is increasing more than any other neurological disease worldwide. PD is a multifactorial neurodegenerative disease with progressive impairment of motor control. Those affected by PD need an individual assessment regarding the care, rehabilitation and aids. Relatives are seen as a resource and carers can spend up to 110 hours a week caring for their relatives with PD. Aim: The aim was to investigate how elderly people with Parkinson's disease experience their care at home and how carers are affected. Method: The study is a literature review where previous knowledge is compiled into an overview. The literature review includes both qualitative and quantitative articles that where searched and selected from the databases Pubmed and Cinahl.  Results: Two major themes emerged: Aging with PS in the ordinary home and the impact of support in everyday life. The participants expressed the value of support, communication and care from health organisations, relatives and other PD-effected people.  Conclusion: The results showed that access to good healthcare and support was a decisive factor to be able to continue to live as normal as possible in the ordinary housing. Most family carers needed support from formal caregivers to cope. Information and education about Parkinson's pathophysiology and emotional support had a major impact to be able to plan the future and to be able to cope with the disease. / Att åldras medför förändringar och nya anpassningar i vardagen både för den äldre och de anhöriga. Att samtidigt drabbas av Parkinsons sjukdom (PS) medför ytterligare utmaningar och många som drabbas av sjukdomen upplever en livskris. Många av de som drabbas av sjukdomen och deras anhöriga har en önskan om att den drabbade ska kunna fortsätta bo kvar i det ordinära boendet och för att detta skall vara möjligt krävs rätt stöd och hjälpmedel för att vardagen skall kunna fungera på ett liknande sätt som tidigare. Denna litteraturöversikt undersöker hur personer som är äldre och har drabbats av PS upplevervården i det ordinära boendet samt hur anhörigvårdarna påverkas. I resultatet framkom vikten av stöd i hemmet för att skapa en fungerande vardag, både socialt och praktiskt. Sjuksköterskan har en avgörande roll för de som vårdas i det ordinära boendet även om de har en anhörigvårdare. Emotionellt stöd, kunskap om sjukdomens patofysiologi, de formella vårdgivarnas kunskaper och anhörigvårdarnas möjlighet till avlastning är viktiga delar som studien kom fram till. PS är en multifaktoriell neurodegenerativ sjukdom med progressiv försämring av motorisk kontroll. Att vara anhörig till en som drabbats av PS kan upplevas frustrerande eftersom den framtida prognosen inte är självklar och framtiden upplevs som oviss. Sjuksköterskan blir därför en bra resurs och informationskälla för medicinska- och patofysiologiska kunskaper hos båda parter. I diskussionen framkom det att vardagen förändrades markant för de som blir involverade i sjukdomen när någon drabbas. Sjukdomen uttrycker sig på olika sätt hos de drabbade och många av de vardagliga aktiviteterna behöver anpassas efter den PS-drabbades enskilda förmåga. Stöd i vardagen och utbildning om sjukdomens patofysiologi var viktiga grundstenar för att få en fungerande vardag. Studiens metod var litteraturöversikt där både kvalitativa- och kvantitativa artiklar har använts. Resultatet består av tio artiklar som analyserats och kodats enligt Friberg (2017). De valda artiklarna till resultatet kom ifrån sju olika länder vilket ökar överförbarheten då det kan leda till internationell kunskap.

Yes / Background: A Personal Health Record (PHR) is an electronic record that individuals use to manage and share their health information, e.g. data from their medical records and data collected by apps. However, engagement with their record can be low if people do not find it beneficial to their health, wellbeing or interactions with health and other services. We have explored the beliefs potential users have about a PHR, how it could be made personally relevant, and barriers to its use. Methods: A qualitative design comprising eight focus groups, each with 6–8 participants. Groups included adults with long-term health conditions, young people, physically active adults, data experts, and members of the voluntary sector. Each group lasted 60–90 min, was audio recorded and transcribed verbatim. We analysed the data using thematic analysis to address the question “What are people’s beliefs about making a Personal Health Record have relevance and impact?” Results: We found four themes. Making it work for me is about how to encourage individuals to actively engage with their PHR. I control my information is about individuals deciding what to share and who to share it with. My concerns is about individuals’ concerns about information security and if and how their information will be acted upon. Potential impact shows the potential benefits of a PHR such as increasing self-efficacy, uptake of health-protective behaviours, and professionals taking a more holistic approach to providing care and facilitating behaviour change. Conclusions: Our research shows the functionality that a PHR requires in order for people to engage with it. Interactive functions and integration with lifestyle and health apps are particularly important. A PHR could increase the effectiveness of behaviour change apps by specifying evidence-based behaviour change techniques that apps should incorporate. A PHR has the potential to increase health-protective behaviours and facilitate a more person-driven health and social care system. It could support patients to take responsibility for self-managing their health and treatment regimens, as well as helping patients to play a more active role when care transfers across boundaries of responsibility. / Leeds Informatics Board

No / Improving cognition is service users' top research priority for life after stroke, and future research should include outcomes that they deem important. Patient perspectives on outcomes are collected using patient-reported outcome measures (PROMs). There is currently no patient-centred PROM specific for cognitive rehabilitation trials. Objective Inform PROM development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post-stroke cognitive problems. Design Qualitative semi-structured interviews in participants' homes. Participants Purposive sample of 16 cognitively impaired stroke survivors at least six months post-stroke. Methods Interviews used a schedule and communication aids developed through patient consultation. Interviews were transcribed verbatim with non-verbal communication recorded using field notes. Data were analysed using a framework approach to find commonalities to shape the focus and content of an outcome measure. Results Participants identified important impacts of their ‘invisible’ cognitive problems, outside of other stroke-related impairments. Cognitive problems exacerbated emotional issues and vice versa. Changes in self-identity and social participation were prominent. Impact was not spoken about in terms of frequency but rather in terms of the negative affect associated with problems; terms like ‘bothered’ and ‘frustration’ were often used. Conclusions The results support the development of a PROM specifically designed to address the impact of cognitive problems. It should: include items addressing a comprehensive range of cognitive skills; ask questions about mood, self-identity and social participation; use accessible wording that respondents understand and endorse; measure impact rather than frequency; and explore perceived impact on carers.

No / Patients have the potential to provide feedback on the safety of their care. Recently, tools have been developed that ask patients to provide feedback on those factors that are known to contribute to safety, therefore providing information that can be used proactively to manage safety in hospitals. The aim of this study was to investigate whether the safety information provided by patients is different from that provided by staff and whether it is related to safety outcomes. Data were collected from 33 hospital wards across 3 acute hospital Trusts in the UK. Staff on these wards were asked to complete the four outcome measures of the Hospital Survey of Patient Safety Culture, while patients were asked to complete the Patient Measure of Safety and the friends and family test. We also collated publicly reported safety outcome data for 'harm-free care' on each ward. This patient safety thermometer measure is used in the UK NHS to record the percentage of patients on a single day of each month on every ward who have received harm-free care (i.e. no pressure ulcers, falls, urinary tract infections and hospital acquired new venous thromboembolisms). These data were used to address questions about the relationship between measures and the extent to which patient and staff perceptions of safety predict safety outcomes. The friends and family test, a single item measure of patient experience was associated with patients' perceptions of safety, but was not associated with safety outcomes. Staff responses to the patient safety culture survey were not significantly correlated with patient responses to the patient measure of safety, but both independently predicted safety outcomes. The regression models showed that staff perceptions (adjusted r(2)=0.39) and patient perceptions (adjusted r(2)=0.30) of safety independently predicted safety outcomes. When entered together both measures accounted for 49% of the variance in safety outcomes (adjusted r(2)=0.49), suggesting that there is overlap but some unique variance is also explained by these two measures. Based on responses to the Patient Measure of Safety it was also possible to identify differences between the acute Hospital Trusts. The findings suggest that although the views of patients and staff predict some overlapping variance in patient safety outcomes, both also offer a unique perspective on patient safety, contributing independently to the prediction of safety outcomes. These findings suggest that feedback from patients about the safety of the care that they receive can be used, in addition to data from staff to drive safety improvements in healthcare. TRIAL REGISTRATION NUMBER: ISRCTN07689702.

No / Introduction There is growing awareness of the importance of patient centered care (PCC) in health care. Within Radiography in the UK, elements of PCC are embedded within professional body publications and guidance documents. However, there is limited research evidence exploring whether perceptions of PCC are equivalent between those delivering (radiographers) and those experiencing (patient) care. This study aimed to address this gap by determining compatibility in perceptions of PCC between those using and those delivering radiography services. This is the first step in developing measurable indicators of PCC in diagnostic radiography. Methods A multi-method two stage approach was undertaken using survey and interview data collection techniques. Ethical approval was granted by University of Derby College of Health & Social Care Ethics committee. This paper reports Stage 1 of the study, the online, cross sectional survey. Participants were asked to indicate their level of agreement to a series of attitudinal statements using a 5-point Likert scale. Statements were paired, but not co-located to increase validity. Participants were invited to provide free text comments to supplement their responses. Stage 2 of the project is reported separately. Results Survey responses were received from all 3 participant subgroups. A minimum response rate of 30 participants per sub-group was set as a target. Response rates varied across subgroups, with only radiography managers failing to meet the expected response threshold. Wide disparity between perceptions of service users and those delivering radiography services on what constitutes high quality PCC was evident. Conclusion It is evident that there is still work required to ensure parity between expectations of service users and deliverers on what constitutes high quality PCC. Implications for practice Further work is required to identify measurable service delivery outcomes that represent PCC within radiographic practice.

No / Introduction There is growing awareness of the importance of patient centred care (PCC) in health care. Within Radiography in the UK, elements of PCC are embedded within professional body publications and guidance documents, but there is limited research evidence exploring whether perceptions of PCC are equivalent between those delivering (radiographers) and those experiencing (patient) care. This study aimed to address this gap by determining compatibility in perceptions of PCC between those using and those delivering radiography services in order to develop measurable indicators of PCC. Methods This project was funded by the College of Radiographers Industry Partnership Scheme. Ethical approval was granted by the University of Derby College of Health & Social Care Ethics committee. This paper reports Stage 2 of the project, which was a series of focus groups and telephone interviews to enable deeper discussion and exploration of PCC. Situational vignettes were used to promote discussion and debate and encourage suggestions for PCC approaches. Audit tools to assess engagement with PCC were developed at individual and organisational level. Results Four focus groups and six telephone interviews were carried out in total. Focus groups were held in a variety of locations to promote attendance. Telephone interviews were used to capture participants who could not attend a focus group in person. Disparity between perceptions of service users and those delivering radiography services on what constitutes high quality PCC was evident. Perceived levels of care and the effectiveness of communication appeared to be the key influences on whether PCC was delivered. Conclusion It is evident from the results of Stage 1 and Stage 2 that we have some way to go before we have parity in how care within diagnostic radiography is perceived, experienced and delivered. Audit tools and an educational toolkit are offered as ways to support increased PCC within diagnostic radiography practice. Implications for practice Several service improvements and audit tools are offered to support the increased delivery of PCC.