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

This constructive design research dissertation aims to understand how design can be used as part of a composite research approach to generate knowledge about how complex phenomena are composed through their interactions and relationships with various actors, both human and non-human. It has done this by investigating a single phenomenon, the patient experience of radiotherapy. Through the purposeful selection and application of methods, theories, and existing research from design, nursing, and STS, this thesis utilizes a mixed-method approach comprised of qualitative, quantitative methods, and design experimentation, across multiple research sites and patient populations, in three research projects – PERT, DUMBO, and POIS – to generate rich and layered knowledge of the patient experience. Experience prototypes are used to challenge, through intervention or provocation, the relationships between the various radiotherapy actors identified through the empirical methods. Together, the research generated in PERT, DUMBO, and POIS construct a map of the networked, interdependent actors which shape the patient’s emotional experience of radiotherapy: the staff, technology, information, environment, and institutions. It also calls attention to the problematic relationship between radiotherapy patients and the technologies used to treat them, which can lead to anxiety, worry, and fear. This thesis offers contributions related to both improving patient experience and designing for complex social issues. First, this research suggests that individuals, other than primary users, need to be acknowledged in the design of medical technologies. It proposes calling attention to patients by naming them as interactors in their relationships with the aforementioned technologies, removing them from the role of implicated actor. Second, this thesis problematizes treating the actors within a network as independent entities, which medical research and user-centered design often does, and calls for a new type of design practice which attends to these networked relationships. Third, this thesis suggests two ways in which design research practice should be shifted methodologically if it wants to engage with and design for complex social issues like patient experience; widening the researcher’s perspective on the issue through the use of a composite methodology, and having the researcher maintain this scope by remaining closely connected to their research context. The implications of this work concern how design research, design education, and design practice might shift their approaches to fully acknowledge and attend to the complexity of systems like healthcare.

Bakgrund: Människans sårbarhet är särskilt utsatt då man drabbats av en sjukdom som kan kräva intensivvård, där det handlar om att överleva. Kommunikation är ett av de mest grundläggande mänskliga verktyg som vi använder oss av, dessutom handlar kommunikationen om mer än endast den verbala kommunikationen. Syftet med kommunikationen är att lära känna patienten och utforska och tillgodose dennes behov. Syfte: Syftet med studien var att beskriva kommunikationens betydelse för patientens upplevda sårbarhet, när denna vårdas vaken i respirator på intensivvårdsavdelning. Metod: Litteraturstudie där 15 kvalitativa artiklar granskades. Resultat: Tre teman framkom. Sårbarhet orsakad av beroendet av vårdpersonal och brist på kontroll i intensivvårdsmiljö, anhörigas betydelse för att lindra sårbarheten och kommunikationens betydelse för patientens upplevda sårbarhet.  Slutsats: Trots tidigare teoretiker, etiska koder, värdegrunder, lagar och forskning om korrekt bemötande prioriteras inte bemötandet med patienten och är ett fortsatt problem. Det finns ett samband mellan att vistas i en intensivvårdsmiljö, bristen på återhämtning, förlorad sekretess och symtom som ångest, stress, panik och rädsla. Minst forskning verkar göras på den patientgrupp som är allra mest sårbar, patienter som vårdas i ett land, där de inte behärskar språket eller har det aktuella språket som modersmål.  När patienten känner sig trygg förbättras kommunikationen och sårbarheten lindras. / Background: A humans vulnerability is particularly exposed when dealing with an illness in need of intensive care, when the focus is to survive. Communication is one of the most essential human tools that we can use in interaction with others. Communication is more than just a verbal way of expressing oneself. The aim with the communication is to get to know the patient and explore his or her needs to be able to fulfill them. Aim: the purpose with this study was to describe the importance of communication for a patients feeling of vulnerability, when cared for in ICU and awake on a respirator. Method: Literature study, where 15 qualitative articles was reviewed. Results: three themes developed. The vulnerability caused by dependence on medical staff and lack of control in the critical care environment, next of kins importance to minimize the patients vulnerability and the importance of communication for the patient's perceived vulnerability. Conclusion: although earlier theorist, ethical codes, values, laws and research, about the correct treatment exist, are the meeting with the patient often not prioritized and therefore remain a concern. There is a clear connection between the ICU environment, lack of recovery, loss of dignity, and symptoms as anxiety, stress, panic and fear. It seems that the least research is done on the patient groups that are the most vulnerable, patients receiving care in a country where they do not speak the language or have that language as their mother tongue.  The communication improves and vulnerability eases when the patient feel safe.

Sammanfattning Bakgrund: Att leva med bipolär sjukdom är besvärligt för många. Sjukdomen ger upphov till allvarliga förändringar i känsloläget. Medicinering är en viktig del i behandlingen av bipolär sjukdom men när detta ger upphov till allvarliga biverkningar som viktökning kan det leda till lidande hos denna patientgrupp. Syftet med studien var att beskriva hur patienter med bipolär sjukdom upplever mediciners biverkningar i samband med viktuppgång och deras erfarenheter av att hantera det samt upplevelser av stödet och deras förväntningar på sjukvården inom aktuellt området. Metod: En kvalitativ och deskriptiv design användes.  Undersökningsgruppen bestod av fem kvinnliga och en manlig patient från ett sjukhus i Mellansverige. Huvudresultatet visade att deltagarna upplevde en stark påverkan på välbefinnande och hälsa av medicinbiverkningar i form av viktökning. Genomgående led deltagarna av biverkningar som påverkade både det fysiska och psykiska måendet. Samtliga deltagare hade gått igenom svåra kamper för att hantera viktökning och det krävdes mycket av deras egna krafter. Vidare betonade de att de inte blivit sedda av sjukvården och deras viktproblem inte tagits på allvar. Deltagarna upplevde starka känslor och lidanden av medicinbiverkningar och viktökning och det framkom förväntningar på att få stöd och information samt kontinuerlig vård för att kunna känna sig trygg i behandlingen och få uppleva en bättre livskvalitet. Slutsatsen visar att personer med bipolär sjukdom lider mycket av viktökning i samband med medicinbiverkningar. Det belyser att viktproblem är svårhanterbart och förbisett av sjukvården, vilket gör att livskvalitén blir svår att bevara. Att problem tas på allvar och att få information samt stöd inom det aktuella området ansågs vara nödvändigt för att kunna lindra vårdlidande Nyckelord: Bipolär sjukdom, Medicin biverkningar, Patientupplevelse, Stöd, Viktökning. / Abstract. Background: Living with bipolar disorder is difficult for many. The disease causes severe changes in emotional state. Medication is an important component in the treatment of bipolar disorder, but when this gives rise to serious side effects such as weight gain, it can lead to suffering of this population. The purpose of the study was to describe how bipolar patients experienced the medication's side effects associated with weight gain and their experience of dealing with it and the experiences of support as well as their expectations of health care within the current range. Method: A qualitative and descriptive design was used. The study group consisted of five women and one male patient from a hospital in central Sweden. The main result showed that participants experienced a great impact on the wellbeing and health of medication side effects such as weight gain. Through the participants suffered from the side effects that affected both the physical and mental health. All participants had gone through difficult struggles to manage weight gain and it took a lot of their own powers. Furthermore, they stressed that they had not been seen by the healthcare and their weight problems were not taken seriously. The participants experienced strong feelings and suffering from the medication side effects and weight gain, and there were expectations of getting support and information as well as continuous care to be able to feel safe in the treatment and experience and to have a better quality of life. The conclusion shows that people with bipolar disorder suffer a lot of the weight gain associated with medication side effects. It highlights that weight problems are difficult to manage and overlooked by the healthcare, making the quality of life of the patient difficult to maintain. That the problems are taken seriously and to get information and support in the area concerned was considered necessary in order to alleviate the suffering of care. Keywords: Bipolar disorder, Medicine side effects, Patient experience, Support, Weight gain.

Syfte: Syftet var att belysa vårdrelationens betydelse i samband med vård av patienter med Anorexia Nervosa. Metod: En systematisk litteraturstudie utfördes. Artikelsökningen som var relevant för syftet gjordes i databaserna Cinahl och PubMed. Tio kvalitativa artiklar identifierades. Dessa kvalitetsgranskades och en manifest innehållsanalys utfördes. Resultat: Resultat som framkom i studien var att vårdrelationen var av stor vikt och att patienterna ansåg att stöd från sjuksköterskorna var hjälpsamt. Svårigheter i vårdrelationen kunde uppstå när patienterna motsatte sig vård. Patienterna upplevde blandade känslor i vårdrelationen. Kommunikationen och vårdrelationen är av stor vikt för upplevelsen av välbefinnande och för fortsatt behandling. Det kategorier som framkom i analysen var: Vårdrelation, Känslomässiga upplevelser och Kommunikation. Slutsatser: Det finns bristande kunskap om vårdrelationens betydelse. En stark terapeutisk relation är av stor vikt för att förhindra att återfall uppkommer och för att kunna bygga en tillit för varandra. Kommunikationssvårigheter uppkommer då patienterna inte är villiga att ta emot behandlingens mål. Detta kan leda till att sjuksköterskan upplevs icke-hjälpsam. Trots patienternas ibland negativa känslomässiga upplevelser ska sjuksköterskorna alltid behandla patienterna med värdighet, respekt och vänlighet. Kommunikationen mellan båda parter är viktig för att få en helhetsbild av patientens situation. Nyckelord: Anorexia Nervosa, Patientupplevelse och Sjuksköterskans-patientens relation. / Objective: The aim was to illuminate the health care relationship in relation to patient care with Anorexia Nervosa. Methods: A systematic literature review was conducted. Articles relevant to the aim of the study was sought in the databases Cinahl and PubMed. Ten qualitative articles were identified. A quality valuation and a manifest content analysis was conducted. Results: The results in this the study showed that the care relationship is of great importance and the patient considered that support from nurses was helpful. The categories found in the analysis were: Care relations, Emotional experiences and Communication. Difficulties in the care relationship could arise when patients opposed care. The patients also experiences mixed feelings in the care relationship. However, communication and care relationshipa are of great importance for the perception of well-being and for continued treatment. Conclusions: There is insufficient knowledge of the importance of the care relationship in treating Anorexia Nervosa. A strong terapeutic relationship is of great importance to prevent relapses from occurring and to build trust in each other. Despite the patient’s fluctuating emotional experiences, nurses should treat patients with dignity, respect and kindness. Communication between both parties is important in order to get an overall picture of the patient’s situation for optimal care and treatment. Keywords: Anorexia Nervosa, Patient experience and nurse-patient relations.

Bakgrund: Psykisk ohälsa blir globalt allt vanligare. Förutom de besvär som tillståndet för med sig tvingas de drabbade även utstå diskriminering, stigma och negativa attityder från omgivningen. Många med en psykiatrisk diagnos upplever därför ett bristfälligt bemötande även från sjukvården. Samsjuklighet och en sämre fysisk hälsa är dessutom vanligare hos denna patientgrupp.  Syfte: Syftet med denna litteraturöversikt är att undersöka hur patienter med psykisk ohälsa upplever den somatiska vården. Metod: En litteraturöversikt där tolv vetenskapliga artiklar av kvalitativ och kvantitativ design hämtades från databaserna CINAHL Complete och PsykINFO. Artiklarna analyserades sedan enligt Friberg (2012).                  Resultat: Tre huvudteman identifierades; Negativa upplevelser, miljöns betydelse samt positiva upplevelser. Under temat negativa upplevelser bildades även tre underteman: Upplevelse av diskriminering, att inte bli tagen på allvar och upplevelse av hinder. Diskussion: Travelbee’s omvårdnadsteori om den mellanmänskliga relationen använts som teoretisk referensram och resultatet diskuteras utifrån hennes teori. Kunskap och hur denna bör användas diskuteras med fokus på kommunikationen, samt hur färdigheter inom detta kan påverka stigma. Betydelsen av kontinuitet och miljö tas även upp. / Background: Mental illness is becoming globally more common. In addition to the inconveniences that the illness brings with it, the affected are also forced to deal with discrimination, stigma and negative attitudes from their surroundings. Many people with a psychiatric diagnosis therefore experience inadequate healthcare treatment. In addition co-morbidity and poorer physical health are also more common in this population. Aim: Examine how patients with mental illness experience somatic care. Method: A literature review was conducted consisting of both qualitative and quantitative research designs, which were derived from the databases CINAHL complete and PsykINFO . The journal articles where analysed using Friberg’s (2012) method and where then color-coded to get an overview. Results: Three main themes were identified: negative experiences, importance of the environment and as well positive experiences. Three sub-themes were also created under negative experiences; Perception of discrimination, not being taken seriously and perceived obstacles. Discussion: Travelbee’s interpersonal relationships nursing theory is used as the theoretical framework with the results discussed based on the theory. Knowledge and how it should be used is discussed with focus on communication, and how communication skills can influence stigma. The importance of continuity and the environment will also be discussed.

Thesis advisor: Dorothy Jones / The importance of the nurse-patient relationship to the overall well- being of the person has been explored extensively by nurses. What is largely missing from this knowledge developed to date is the patient's perspective. The purpose of this study was to develop a reliable and valid measure of patients' perceptions of feeling known by their nurses during an acute, surgical, hospital admission. The development of the PPFKN Scale was guided by Newman's theoretical framework of Health as Expanding Consciousness (1994) and data from a qualitative descriptive study conducted in 2003 (Somerville). The current investigation focused on the development and psychometric testing of the PPFKN Scale. The four themes that emerged from the earlier qualitative study were used to guide the development of the 85-item scale. This scale was exposed to a panel of nurse experts to establish inter-rater agreement and content validity, item understandability and readability. The revised scale was piloted with five participants who had experienced an inpatient, surgical admission to determine content validity, item readability and understandability. The revised 77-item scale was then administered to 327 surgical inpatients across seven general care units at a large academic urban medical center. A sample size of 296 completed surveys was analyzed. A four-component solution was devised using Principal Components Analysis with Varimax rotation. This four-component solution accounted for 63.3% variance, with a total scale Cronbach's alpha coefficient of 0.99. A component loading cut-off was set at 0.3 and items not loading at this value on the expected component were dropped. This process resulted in a reliable and valid 48 item PPFKN Scale with four components and a total scale Cronbach's alpha coefficient of 0.98. / Thesis (PhD) — Boston College, 2009. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Bakgrund: Patienter med hematologisk sjukdom erhöll en tunnellerad central venkateter i lokal anestesi inför behandling. Det är vanligt att patienter som är vakna under operation upplever oro. Syfte: Syftet med studien var att undersöka hur patienter med hematologisk sjukdom upplever att få en tunnelerad CVK i lokalanestesi samt hur de anser att upplevelsen kan förbättras. Metod: Studien har en deskriptiv design med kvalitativ metod. Semistrukturerade intervjuer genomfördes med 10 patienter där en intervjuguide med öppna frågor användes. Intervjuerna analyserades med hjälp av systematisk textkondensering enligt Malterud. Resultat: Gemensamt för samtliga patienter i studien var att CVK-ingreppet överlag var en positiv upplevelse. Patienterna beskrev att kontinuerlig information och ett gott omhändertagande på operation bidrog till en positiv upplevelse av att få en tunnelerad CVK. I resultatet framkom fyra teman; 1- mental styrka hjälpte patienterna att känna sig redo, 2- att vara utsatt i en miljö där smärta och obehag förekom, 3- omhändertaget av professionell och erfaren personal bidrog till en lugn stämning, 4- tidigare erfarenheter och information minskade oro och gav patienterna ökad trygghet. Slutsats: Studien visar att det finns potential att göra upplevelsen av att få en tunnelerad CVK bättre med enkla medel. Förbättringen kan ske genom tydligare information, varmare temperatur inne på operationssalen och genom att anestesisjuksköterskan stödjer patienten vid oro. Informationen och vården behöver således bli mer personcentrerad och vårdpersonal behöver öva för att bli bättre på att ge denna vård. / Background: Prior to treatment, patients with haematological disease receives a tunnelled central venous catheter in local anesthesia. It is common for patients who are awake during surgery to experience anxiety. Aim: The aim of this study was to describe how patients suffering from hematological diseases experience tunelled central venous cathetrization in local anesthesia and how their experience could be improved. Design: Semistructured interviews using an interview guide with open-ended questions where performed with 10 patients. Data were analysed with systematic text condensation according to Malterud. Result: The included patients had an overall positive experience from recieving a tunelled central venous catheter. The patients described how continuous information and good care improved their experience of recieving a tunelled central venous catheter. Four themes were identified in the result; 1- having mental a strenght made the patients feel relieved and prepared, 2- being exposed to an environment where pain and discomfort were present, 3- being taken care of by experienced professionals contributed to a calm atmosphere, 4- previous experiences and information reduced anxiety and promoted an increased feeling of safety Conclusion: The present study shows the potential to make patients experiences better by simple means, for example by giving more distinct information, raising the temperature in the operating room and by the nurse anesthetist acting more supportive when patients feel anxiety. The information and nursing care need to be more personalized and professionals need to practice in order to improve.