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

Communication between the patient and healthcare professional is pivotal in enabling effective self-care management to occur (Street et al., 2009) which in turn leads to improved health outcomes (Kravitz et al., 1993). However, there is little published data exploring the most effective tools for evaluating whether these communication skills occur and what particular attributes enhance the process (Goodchild, Skinner & Parkin, 2005; Heisler et al., 2003; Parkin & Skinner, 2003). This study aims to identify patient-centred communication skills occurring in consultations and to explore their link with a tool-recording agreement on reported decisions made. Quantitative analysis was conducted on 86 dietetic consultations across four outpatient diabetes services. Audio recordings from 20 of these were qualitatively analysed. Greater agreement on reported decisions correlated significantly with level of empathy demonstrated (t = .283, p = .0005). In consultations featuring agreement, dietitians expressed more empathy (p = .02), used more active listening skills, asked significantly more exploratory questions on self-care practices (U = 18.5, p = .007), provided significantly more supportive/collaborative information-giving exchanges (U = 11, p = .003) and were more likely to set an agreed agenda at the start of consultations. In contrast, consultations featuring disagreement had low levels of empathy, fewer active-listening skills and exploratory questions, significantly greater numbers of persuasive information-giving exchanges (U = 17, p = .007) and more recommending exchanges. Generally, agendas were not set. In conclusion, recording patient/healthcare professional agreement on reported decisions made during a consultation is a simple tool that can indicate the presence of patient-centred communication skills. Active-listening skills allow expressions of empathy that facilitate patient involvement and interactive dialogue. The measure of agreement should be used frequently as a marker of effective dietetic consultations and to provide further data on the relationship between patient-centred communication and implementation of behaviour change for improved health outcomes.

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.

Cognitive difficulties can persist for months and years after stroke and adversely impact confidence, mood and functional recovery. Stroke survivors, carers and healthcare professionals collectively agree that improving cognition is the number one research priority for life after stroke. Future research should include measurements of outcome that service users deem important. Patient reported outcome measures (PROMs) are a means of gaining patient perspectives that can be standardised for use in a trial. PROMs should be developed with service users to incorporate their priorities but people with cognitive difficulties are often systematically excluded from the development and use of PROMs. Study 1 used qualitative interviews (N=16) to explore stroke survivor perspectives on the important and measureable impacts of persisting cognitive problems. The results of this study generated requirements for a PROM that related to conceptual underpinning and face validity of a measurement tool. Study 2 was a systematic review of existing PROMs related to cognition. 20 Identified PROMs were critically appraised against the requirements generated in the qualitative study. No existing PROMs were identified that met all of the qualitative study review criteria. The next stage described in chapter 3, was to develop a new PROM that: utilised the strengths of existing tools; met qualitative study requirements; and was refined through consultation with different stakeholders, prioritising feedback of stroke survivors with cognitive difficulties. The result of this work was the Patient Reported Evaluation of Cognitive State (PRECiS) scale. Study 3 was a psychometric study with stroke survivors (N=164) to test PRECiS in a large sample. Quantitative and qualitative data were collected on acceptability, feasibility and other psychometric properties of validity and reliability. PRECiS demonstrated good acceptability to stroke survivors and performed well psychometrically. Future validation work required for PRECiS is described in discussion chapter 4. Subject to further validation work, PRECiS may be particularly useful for pragmatic trials of cognitive rehabilitation after stroke.

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.

Bakgrund En kartläggning av stigma med stigmas underliggande betydelser såsom diskriminering, exklusion, makt underläge, etikettering, stereotypisering och fördomar, och hur dessa har en inverkan på personer med beroende när det uppsöker vården. Med en teoretisk utgångspunkt i personcentrerad vård, där mötet mellan patienter och hälso- och sjukvårdspersonal är i fokus. Syfte Att belysa upplevelser av stigma för patienter med substansberoende i mötet med hälso- och sjukvården utifrån ett patientperspektiv. Metod En icke-systematisk litteraturstudie, bestående av 17 peer-reviewed artiklar med ett urval av kvalitativa, kvantitativa och mixad metod, funna i CINAHL och PubMed. Kvalitetsgranskade efter Sophiahemmet Högskolas bedömningsunderlag för vetenskaplig klassificering samt kvalitet avseende studier med kvantitativ och kvalitativ metodansats. Resultat Patienternas utsagor om tydliga fall då de upplevt stigma, diskriminering, bristande eller utebliven behandling på grund av sitt missbruk, i olika vård och omsorgs sammanhang. Med data och utsagor om bra och dåliga möten, samt förslag på förbättring för hur ett möte kan gå till för att minska stigma. Följder som blir av ett förväntat eller upplevt stigmatiserat bemötande, där utebliven vård, uppföljning och ovilja till rehabilitering är allvarliga biverkningar. Slutsats Det finns en stor misstro mellan personal och patienter, från bådas håll. Patienterna upplever att de inte får den vård och omsorg de har rätt till och enbart bli bemötta som problem. Det uppkommer brister i behandling då patienter inte får den abstinens eller smärtlindring de anser sig behöva. Denna bristande behandling leder till att många patienter ger sig av från sjukhusen utan att fullfölja sin behandling. / Background Mapping of stigma with stigma's underlying meanings such as discrimination, exclusion, power disadvantage, labelling, stereotyping and prejudice, and how these have an impact on people with addiction when they seek care. With a theoretical starting point in person-centred care, where the meeting between patients and health care personnel is in focus. Aim To describe experiences of stigma in patients with substance addiction in the encounter with healthcare from a patient perspective. Method A non-systematic literature review, consisting of 17 peer-reviewed articles with a selection of qualitative, quantitative, and mixed methods, found in CINAHL and PubMed. Quality reviewed according to Sophiahemmet University's assessment tool for scientific classification and quality regarding studies with a quantitative and qualitative method approach. Results The patients' statements about clear cases when they experienced stigma, discrimination, lack of or non-existent treatment due to their addiction, in various care and medical care contexts. With data and statements about good and bad meetings, as well as suggestions for improvement for how a meeting can be done to reduce stigma. Consequences of an expected or perceived stigmatized treatment, where failure to provide care, follow-up, and reluctance to rehabilitate are serious side effects. Conclusions There is a great deal of mistrust between staff and patients, from both sides. The patients feel that they do not receive the care and concern they are entitled to and are only treated as a problem. Deficiencies in treatment arise when patients do not get the abstinence or pain relief, they think they need. This lack of treatment leads to many patients leaving the hospital without completing their treatment.

Parents of children with autism shoulder substantial responsibility for navigating intervention to address autism-related concerns, and face conditions of high uncertainty and stress to do so. There is a lack of holistic research explaining how parents cope and respond to the complexity and obstacles that characterize their situation as they navigate multiple forms of intervention across multiple systems of care. The purpose of this qualitative study was to develop a social psychological explanation in the form of a substantive theory of how Ontario parents of children with autism navigate intervention under complex informational conditions. I used grounded theory methods, a constructivist approach and symbolic interactionist analytic framework for this research. The findings are primarily based on 45 in-depth (90-minute) interviews with 32 mothers from different urban and rural Ontario regions (fathers participated in 3 cases), and 9 professionals with expertise supporting parents. Documents were also analyzed. The central process of navigating intervention, labeled making your own way, consists of adjusting to the need to navigate intervention, in which parents construct the meanings that prepare and motivate them for taking action to navigate intervention. Adjusting consists of 4 interdependent sub-processes that together explain parents’ action: defining concerns, informing the self, seeing what is involved, and emotionally adapting. I portray the central process according to three overlapping heuristic stages: beginning the autism journey, handling transitions, and easing off. Many parents develop a strong sense of urgency to which they can respond by going into high gear, expending substantial personal resources sometimes at unsustainable rates in the pursuit of intervention. The findings have implications for supporting parents to improve outcomes including parent stress. The central process of making your own way is generically transferrable to other healthcare consumer populations. Other conceptual elements have theoretical relevance for consumer-centered areas of health research. / Thesis / Doctor of Philosophy (PhD) / Parents of children with autism shoulder significant responsibility for navigating many varying services and treatments (intervention) to address autism-related concerns, and experience great uncertainty and stress as they do so. There is a lack of research explaining how these parents respond to the complexity and obstacles they encounter as they navigate intervention. Using qualitative research methods, I interviewed 32 urban and rural Ontario parents (mostly mothers) and 9 professionals with expertise supporting parents to understand in detail how parents respond to their situation by making their own way to intervention. The resulting analytic findings have implications for improving support for parents of children with autism to reduce stress in their lives and improve other outcomes. The theory developed is also relevant for understanding how other healthcare consumer populations navigate intervention, and contributes to general knowledge in different consumer-centered areas of health research.