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 / 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.

No / Awareness is growing of the importance of patient centered care (PCC) in diagnostic radiography. PCC is embedded within professional body publications and guidance documents, but there is limited research evidence exploring the perceptions of student radiographers and radiography academics. Methods: This paper reports Stage 1 and Stage 2 of the project from the perspective of radiography academic and student radiographer participants, and compares these to the perspectives of service users, clinical radiographers and radiography managers reported previously. Stage 1 used an online survey tool to gauge participant agreement with a series of attitudinal statements. Stage 2 used situational vignettes to promote discussion and debate about PCC approaches. Results: Response rates to the Stage 1 survey were above the minimum threshold, with 50 responses from student radiographers and 38 responses from radiography academics. Stage 1 participants were asked to participate in Stage 2 on a voluntary basis. As with service users and service deliverers, care communication, event interactions and control over environment were the key influences on PCC. However, students highlighted differences between reported and observed levels of PCC. Conclusion: There is some way to go to embed PCC in diagnostic radiography practice. As impartial observers of radiography practice, student radiographers highlight the difference between service users and service deliverer's perceptions of PCC. Whilst the focus of clinical radiographers remains on efficiency, it is difficult for student radiographers to challenge the accepted norm. Role models are required to promote PCC behaviours and a holistic approach in radiography practice. Implications for practice: A package of educational support and audit tools will be made available to support both service deliverers and student radiographers to deliver PCC

Bakgrund: Enligt svensk lagstiftning har patienten en laglig rätt att vara delaktig i sin vård. Detta betyder också att sjuksköterskan har en skyldighet gentemot patienten att göra hen delaktig. Trots denna rättighet upplever patienter att de ibland inte ges möjlighet till att vara delaktiga. Syfte: Syftet med den här studien är att beskriva patientdelaktighet och sjuksköterskans möjlighet att främja respektive hindra patientens upplevelse av delaktighet. Metod: Studien är en litteraturöversikt vars resultat är baserat på tio vetenskapliga artiklar som publicerats mellan åren 2005-2016. Resultat: Patienten anser att det är viktigt att sjuksköterskan ger möjlighet för patienten att uttrycka sig och tilldelas information om vårdsituationen. Genom detta gavs patienten möjlighet till att vara delaktig. Patienten vill bli sedd och hörd samt ses som en jämlik partner i vården. För detta behövs en etablerad relation mellan sjuksköterska och patient. Konklusion: Studier visar att patienten upplever att det finns hinder för att upprätthålla patientdelaktighet samt att sjuksköterskans förhållningssätt har betydelse för patientens upplevelse av delaktighet. / Background: According to Swedish law, patients have a legal right to be involved in their care. This also means that the nurse has a obligation towards the patient to make her/him involved. Despite this right, patients feels that they are not given the opportunity to be involved in their care. Aim: The aim of this study is to describe patient participation and nurses opportunity to promote and prevent the patient’s experience of participation. Method: The study is a literature review whose results are based on ten scientific articles published between the years 2005-2016. Results: The patient believes it is important that the nurse give the opportunity towards the patient to express themselves and be informed about the care situation. Through this the patient was given the opportunity to be involved. Patients want to be seen and heard, and seen as an equal partner in care. This requires an established relationship between nurse and patient. Conclusion: Studies show that patients find that there are obstacles to maintain patient participation and that the nurse’s approach is relevant to the patient’s experience of participation.

A comprehensive understanding is lacking of the experiences persons with acquired physical disabilities have of changes in their engagement in occupations and of the conditions influencing these experiences Furthermore, little is known about the experiences these people have of the rehabilitation process and whether the rehabilitation services satisfy their needs. Access to such knowledge would significantly add to the ability to design rehabilitation services intended to enhance participation in everyday life. The overall aim of this thesis was, therefore, to illuminate and enhance the understanding of how persons with acquired physical disabilities experienced their rehabilitation process and their possibilities to engage in occupations in everyday life. The thesis is comprised of five studies. The planning of the clients’ rehabilitation at hospital was explored through interviews with the clients (n=57) and the professionals (n=50). Interviews exploring how persons with physical disabilities experienced their rehabilitation process (n=15), their occupational lives in their homes (n=13) and the use of assistive devices (n =17) were analysed qualitatively. Data was also collected from persons with spinal cord injury (n =161) by the Impact on Participation and Autonomy questionnaire. The findings showed that the professionals used different strategies to encourage the clients to participate in the planning of the rehabilitation and that the strategies were based on traditions rather than on the individual clients’ desires to participate. The informants’ experiences reflected three parallel chains of rehabilitation over a period of time, a medical, a psychological and a social one. The influence of the different rehabilitation chains on how the clients’ lives turned out varied over time, and the professionals were predominantly involved in the medical rehabilitation chain. The informants’ experiences showed that their engagement in occupations in the home differed profoundly. Access to social support, which was provided under different conditions, was of decisive importance for their occupational engagement. The findings also showed that changes in the informants’ occupations in the home setting transformed the meaning of the home in general. The meaning of using assistive devices was experienced as manifold and double-edged. The incorporation of or resistance to assistive devices was understood as different approaches to adaptation with the same intention: to achieve desired occupational self-images. The majority of the informants perceived their participation in the life situation as sufficient but more than half reported one or more severe problems with participation. Access to social support in everyday occupations had a greater impact on predicting severe problems with participation than certain traditional health related factors or aspects related to the individual. To conclude, the findings indicate that the rehabilitation services need to be better able to adapt to clients’ desires to participate in the planning of their rehabilitation, and designed to satisfy the various needs the clients experience throughout the rehabilitation process. It was revealed that the societal and social environment, as manifested through social interactions, are of central importance in understanding the consequences of and possibilities to engage in occupations supporting participation in everyday life.

Patient-centred care is the gold standard of health care, yet in practice, problems prevail. The use of the ‘expert patient’ in health professional education is one form of learning patient-centred care. A gap in the literature regarding how the use of ‘expert patient’ in health professional education promotes patient-centred care was acknowledged in current research. With Queen’s University Health Sciences & Affiliated Teaching Hospitals Research Ethics Board approval, a sample of Queen’s University MScOT students participated in a qualitative study with the following research question: “How does the students’ experience of interacting with the ‘expert patient’ (‘XP’) relate to learning regarding client-centred practice (CCP)?” Three objectives were proposed: 1. Describe the OT students’ experience of interacting with the ‘expert patient’, 2. Describe the students’ learning regarding client-centered practice, 3. Identify the conditions particular to the ‘expert patient’ experience that led to learning regarding client-centered practice. In-depth interviews were conducted with the students subsequent to their ‘expert patient’ experience. Analysis revealed three conditions that together provided the foundation for student experiential learning regarding client-centred practice: interaction with particular persons with stable disability known as ‘expert patients’; students’ requirement to evaluate them and thus ‘experience power’; and explicit opportunities for ‘directed reflection and discussion’. Questions were raised for researchers, health care professional educators and health care professionals regarding the potentially transformative nature of engaging in unfamiliar contexts with openness to learning. The thesis allowed insight into the lived experience of OT students learning with ‘expert patients’; the admiration, discomfort, humility and gratefulness they experienced while gaining a sense of the meaning of collaboration, respect for autonomy and recognition of expertise. Implications of the research impact all stakeholders in health professional education. / Thesis (Master, Rehabilitation Science) -- Queen's University, 2013-04-05 00:18:04.617

Bakgrund: Personcentrerad vård är aktuellt i svensk sjukvård. Patientlag 2014:821 stärker kravet på information, delaktighet och samtycke från patienten. Personcentrerad vård leder till ökad patienttillfredsställelse och delaktighet. Sjukvården effektiviseras och vårdkvalitén ökar. Det kan finnas utmaningar i att arbeta personcentrerat på akutvårdsavdelning då dessa patienter kan uppleva hjälplöshet och sårbarhet vid akut sjukdom.   Syfte: Syftet med studien var att kartlägga upplevelsen av personcentrerat vårdklimat hos sjuksköterskor och patienter på akutvårdsavdelning.   Design: Prospektiv tvärsnittsstudie   Metod: Kvantitativ ansats med enkätstudie. Sjuksköterskor och patienter på akutvårdsavdelning tilldelades mätinstrumenten Person-centred Climate Questionnaire staff och patient version.   Resultat: I studien inkluderades 59 sjuksköterskor samt 121 patienter. På den sexgradiga skalan värderar sjuksköterskor personcentrerat vårdklimat lägre (4,16) och patienter högre (4,99) (p<0,001). Manliga patienter värderar personcentrerat vårdklimat högre än kvinnliga patienter (p=0,001). Sjuksköterskor som arbetat länge på avdelningen värderar personcentrerat vårdklimat lägre (rs= -0,26; p=0,05). Sjuksköterskor med högre utbildningsnivå värderar subkategorin säkerhet lägre (rs= -0,27; p=0,04). Vid en längre patientvårdtid värderas personcentrerat vårdklimat lägre (rs= -0,24; p=0,01).   Konklusion: Den viktigaste slutsatsen är generellt positiva resultat gällande personcentrerat vårdklimat på akutvårdsavdelning. Studiens resultat understryker att vården kan utvecklas för att förbättra det personcentrerade vårdklimatet för patienter på akutvårdsavdelning, med särskilt fokus på kvinnliga patienter. / Background: Person-centred care is of current interest in Swedish health care. The Patient Act (2014:821) strengthens the requirement for information, participation and consent of the patient. Person-centred care increases patient satisfaction and participation. It also leads to increased quality of care and is more efficient. Patients on acute care wards may experience helplessness and vulnerability during acute illness and it could be challenging to achieve person-centred care.   Aim: The aim of the study was to survey person-centred climate by nurses’ and patients’ on acute care ward.   Design: Prospective cross-sectional study   Method: Quantitative approach with survey. Nurses and patients was given the instruments Person-centred Climate Questionaire staff and patient version.   Results: The study included 59 nurses and 121 patients. On the six-graded scale nurses value person-centred climate lower (4,16) and patients higher (4,99) (p<0,001). Male patients value person-centred climate higher than female patients (p=0,001). Nurses that worked long time on the ward value person-centred climate lower (rs=-0,26; p=0,05). Nurses with higher education value the subscale Security lower (rs=-0,27; p=0,04). Patients with longer hospital stay value the person-centred climate lower (rs=-0,24; p=0,01).   Conclusion: The main conclusion is generally positive results in terms of person-centred climate on acute care ward. The study’s results underline that there is room for improving healthcare on acute care wards, with particular focus on female patients.

Bakgrund: Patienter tillbringar längre tid på akutmottagningen under 2018 jämfört med året innan. De lämnas ofta ensamma under många timmar i väntan på handläggning eller vårdplats. Kommunikationen och informationen mellan vårdpersonal och patienter är stundtals bristfällig vilket kan påverka patientens upplevelse av vistelsen på akutmottagningen. Syftet med studien var att beskriva patienters upplevelse av kommunikation och information vid ett besök på akutmottagningen. Metoden som användes var en allmän litteraturöversikt av både kvantitativa och kvalitativa artiklar. Sexton artiklar inkluderades. En innehållsanalys gjordes på artiklarnas resultat inklusive identifiering av meningsbärande enheter, kodning och syntetisering av innehållet till kategorier. Resultatet bildade tre huvudkategorier: Upplevelse av organisationen, upplevelse av vårdmiljön och upplevelse av vårdrelationen. Patienterna var i behov av en tydligare information gällande verksamhet och handläggning. Även brister i kommunikationen gällande exempelvis uppdatering av väntetider, undersökningar och provresultat framkom. Patienterna önskade en mer frekvent interaktion med sjukvårdspersonalen och kunde stå ut med väntetiderna bara de fick kontinuerlig information om förseningarna. Slutsats: Patienter kan känna sig övergivna och bortglömda på akutmottagningen. Att arbeta med personcentrerad vård på en akutmottagning är en utmaning även om behovet finns. En förbättrad kommunikation mellan vårdpersonal och patient kan påverka patientens upplevelse av akutsjukvård i en redan sårbar situation. / Background: Patients are spending more time at the emergency department in 2018 compared to the previous year. They are often left alone for many hours while waiting for treatment or care. A lack of communication and information between healthcare professionals and patients might affect the patient's experience of the stay at the emergency department. The aim of the study was to describe patients’ experience of communication and information during a visit at the emergency department. The method used was a general literature review of both quantitative and qualitative articles. Sixteen articles were included. A content analysis was performed, including identifying meaning units, coding and synthesizing the content into categories. Results: Three main categories emerged: Experience of the organization, experience of the care environment and experience of the care relationship. Patients were in need of clearer information about the expected course of events and management. Also lack of communication such as updating of waiting times, examinations and test results were identified. The patients wanted more frequently interactions with the healthcare staff and could endure the waiting times if only they were given information about the delays. Conclusion: Patients might feel abandoned and forgotten at the emergency department. To use a person-centered care at an emergency department is a challenge, even if the need exists. An improved communication between nursing staff and patients might affect the patient's experience of emergency care in an already vulnerable situation.