A Thesis submitted to The University of Arizona College of Medicine - Phoenix in partial fulfillment of the requirements for the Degree of Doctor of Medicine. / Research Question: Will trained volunteers significantly affect patient experience compared to educational fliers or no intervention? Background: Patient experience continues to be an important issue with our nation’s healthcare system especially with the adoption of Value Based Purchasing for hospital reimbursement. With the use of Honor Health Scottsdale’s large number of volunteers, we hoped to design and develop a program that will improve experience for patients presenting to a community based Emergency Department. Objective: To evaluate the impact of Emergency Department Volunteers on the patient experience.

There are in excess of one million people across the UK people living with atrial fibrillation (AF), a long term condition that can lead to stroke and other complications, costing the NHS over £2,200 million per year. However little is known about the experience of living with AF and what patients' perceptions are of the support they receive from health professionals. In order to ensure that patients have the best possible experience of care, healthcare professionals need to have an understanding of how patients view their condition and the type of support they would like to receive from the professionals involved in their care. Although there has been a significant amount of work investigating social support for people with health conditions, there has been little work exploring support provided by healthcare professionals, defined in this study as professional support. This study aimed to investigate and assess the professional support needs of people with AF to develop knowledge and understanding in this field. A theoretical framework for professional support was developed based on the tri-dimensional model of social support and was used to direct the research. Using an exploratory sequential design, a two phase mixed methods study was undertaken. Initially, qualitative interviews were undertaken with patients recruited from outpatient arrhythmia clinics at one National Health Service (NHS) hospital and identified from the perspective of the patient how, when and where healthcare professionals did/did not provide support. Key components of emotional, informational and tangible professional support were identified from thematic analysis of the interview data and used to inform the development of a quantitative questionnaire. Physical activity, exercise and the impact of AF on activity levels were identified by participants as important and so were also included. The quantitative online questionnaire was completed by patient members of the Atrial Fibrillation Association (AFA). To examine relationships between variables, statistical analyses were performed using Fisher's exact test and indicated that people with AF had a range of emotional, informational and tangible professional support needs. Different subgroups of people with AF had different professional support needs: People with more severe symptoms needed more emotional support as well as more tangible support and people with paroxysmal AF needed more informational support. People undergoing ablation as treatment for their AF had specific informational and emotional needs for support. AF played a significant part in the lives of people with AF by modifying activities of daily living and shaping physical activity behaviour and choice of activities. People with AF therefore needed professional support in maintaining and/or increasing their levels of activity. Considering the specificity of professional support, GPs, cardiologists and arrhythmia nurse specialists were identified as most supportive, with GPs and cardiologists also considered as the least helpful at providing support, indicating a variation in professional support. The findings from this study contribute to the limited body of knowledge describing the experience of living with AF and provide healthcare professionals with a unique understanding of how best to provide professional support. The tri-dimensional model provides detailed knowledge of the components of informational, emotional and tangible support that people with AF would like to receive from the healthcare professionals involved in their care. The findings indicate there are differing support needs for different subsets of people with AF demonstrating a need for individualised professional support. The theoretical framework for professional support used in this study provides a model that could be used in future research studies to identify the types of professional support required by patients and to identify subgroups of patients who may require additional professional support. By accurately identifying the needs of patients, this will ensure that healthcare professionals are able to deliver effective patient centred services, leading to an improved patient experience and the delivery of high quality patient care.

Patient feedback about practitioners’ and practices’ care is commonly used in UK general practice, sometimes by practitioner choice but often embedded in quality assurance and quality improvement programmes. Significant resources in NHS Scotland are spent gathering and reporting on patients’ reported experiences of care using a national GP patient experience survey – Better Together. There is however limited reference in current health policies to strong evidence demonstrating that this is an effective strategy to stimulate improvements in practice and patients’ experiences of care. This research study used realist review of existing literature to understand the impact of patient feedback at practice and practitioner level on patients’ experiences of general practice care, and realist evaluation of three general practices to understand how patient feedback is viewed and used for quality improvement in everyday general practice. Findings from the realist review indicate that there is little or no evidence that practice or practitioner level patient feedback leads to improvements in patients’ experiences of general practice care. The realist evaluation demonstrated great variance in how practice teams gather and respond to patient feedback and significant concerns about the validity of the Better Together survey. Variance in the strategies used to gather feedback and responses to it were predominantly influenced by collective staff beliefs about the quality of service they provided, their estimates of patients’ views of the service and their perceptions of patients’ preferences for providing feedback. While GPs mostly perceived that patients would be likely to tell someone in the practice when dissatisfied, interviews with patients indicated they had little understanding of how they could give feedback and an overall preference for doing this anonymously. One practice team was seen to initiate significant changes aimed at improving patients’ experiences but their ability to demonstrate improvements in experience were limited by changes in their workforce, conflicting externally set targets and methodological limitations of current patient experience measures. Further research is needed to understand how the findings from this study apply to general practice across Scotland and how practices can be best supported to use patient feedback to improve services.

Aim: The aim of this study was to describe the nurse’s work at an emergency department trough a perspective of caring. Method: A literature review has been made of twelve studies published between the years of 2002 – 2012. The focus of all the studies was on Swedish emergency departments.   Results: The researchers found four themes that they choose to use as a way of describing the nurses work in the emergency room as detailed as possible. These themes were: ‘The emergency room’, ‘the nurse’s job assignments at an emergency department’, ‘the patient’s experiences’ and ‘lifeworld and communication’. This study shows that it is problematic for the nurses to give a caring nursing. The emergency department is more focused on medicine than caring, as there are certain parameters to follow as a nurse at an emergency department.  Lack of time and manpower has been a consistent factor in this study to explain the inability to give good caring at the emergency department. Conclusion: High workload leads to short time with each patient. This leads to a lack of patient care in the emergency room. In the short meetings with patients, important information could get lost and this could lead to inferior nursing. This study shows that some nurses developed strategies to make a fast and correct assessment of the patient. Other nurses developed strategies to make the patients feel more comfortable. Examples were to make eye contact, touch the patient in a comforting way and take the time to really listen to the patient during the short time they had with each patient.

Background: Due to the growing number of individuals suffering from dementia, many will require acute hospital care as other indirectly related conditions appear throughout the course of the disorder. Significant concerns have been raised about the provision of quality care. Understanding their experiences is essential. Method: Semi-structured interviews were conducted with caregivers and people with dementia after acute hospitalization. Data was analyzed using qualitative content analysis. Results: Twenty-nine participants experienced hospitalization and commented primarily on the negative experience. Despite the importance of caregiver involvement, and evidence of caregiver burden, they commented they were rarely included in care plans and lacked support. Continuity of care was said to be affected by absent communication amongst health care team members. The acute hospital process and environment was perceived as not supportive of dementia person-centred care principles, with reports of poor staff knowledge and recognition of the disorder. Conclusion: Reports of acute care hospital experiences of people with dementia and their caregivers provide insights for potential gaps in care delivery.

BAKGRUND: Mer än var tionde kvinna drabbas av bröstcancer under sin livstid, vilken är den vanligaste cancertyp som drabbar flest kvinnor. Trots den höga incidensen har antalet friskförklarade ökat de senaste åren. Kvinnor med bröstcancer får en förändrad självbild efter diagnos och behandling, vilket generellt skapar specifika omvårdnadsbehov. Det är viktigt att hantera dessa konsekvenser av bröstcancer, då de är starkt sammankopplade med livskvaliteten. Detta medför ett ökat behov av holistisk omvårdnad med fokus på livskvalitet.  SYFTE: Att belysa sjuksköterskans stödjande roll i omvårdnaden av patienter med bröstcancer. METOD: Undersökningen genomfördes som en litteraturöversikt och utgår från artiklar baserade på kvalitativa studier. RESULTAT: Bröstcancerpatienter i olika stadier, från diagnos till efter avslutad behandling, uttrycker att sjuksköterskan varit en viktig resurs genom hela vårdprocessen. Framför allt betonas hantering av information, stöd och kompetenta sjuksköterskor. Sjuksköterskan har förmedlat emotionellt stöd, hjälpt till att navigera i systemet som omger vårdprocessen, varit kompetent, varit kunnig inom cancervård samt har förmedlat information.  SLUTSATS: Litteraturstudien visar att sjuksköterskor i de flesta fall möter bröstcancerpatienter i deras behov av stöd, information, kliniska färdigheter samt kunskap om hur systemet i hälso- och sjukvården fungerar. Det framkommer att de flesta patienter och närstående är nöjda med vården och att de har känt förtroende för sjuksköterskan. För att ett salutogent hälsoperspektiv ska kunna råda behöver de här patienterna inte bara hjälp med den fysiska vården relaterad till bröstcancer utan detta förutsätter vård i ett holistiskt perspektiv. / BACKGROUND: More than one in ten women get diagnosed with breast cancer during their lifetime. Breast cancer is currently the most common type of cancer amongst women. Despite the high incidence the number of women who are declared healthy in recent years, increase. Women with breast cancer experience an altered self-image after diagnosis and treatment which generally creates specific nursing-needs. It is important to handle these impacts of breast cancer since they are strongly connected with life quality. This increases the need of holistic nursing with a quality of life focus. PURPOSE: To highlight the nurse´s supportive role in the care of patients with breast cancer. METHOD: The survey was conducted as a literature review and based on qualitative studies. RESULT: Breast cancer patients at various stages, from diagnosis to after completed treatment express that the nurse has been an important resource throughout the care process. In particular, they emphasize managing information, being supportive and is knowledgeable. The nurse has conveyed emotional support, helped to navigate in the system surrounding the care process, owned skills and knowledge in cancer care and that supplied information. CONSLUSION: The literature review show that nurses in the majority of cases meet patients in their needs for support, information, clinical skills and knowledge of how the system of health care functions. It appears that most patients and their relatives are satisfied with the care and they have trusted the nurses. To be able to provide care with a salutogenic perspective in interest, the patients not only need physical care, they need care with a holistic perspective.

This study examines people’s experiences of being a patient on an acute psychiatric inpatient ward in Scotland. Within the existing research base few studies focus on the patient’s experience of acute psychiatric inpatient care, and none of these is set in Scotland. Those that do, indicate that the patient experience of acute psychiatric inpatient care is often negative. The theoretical perspective of this study conceptualises experience as represented in narrative form, thus the data take the form of narratives. Thirteen participants were recruited through the acute ward. Each participant participated in two unstructured interviews focussed on gathering narratives of their experience. Data analysis was holistic, guided by Gee’s (1991) socio-linguistic theories. This holistic analysis culminated in the presentation of each participant’s narrative in poetic form. From the holistic analysis I identified three themes - help, safety and power - that were evident in the analyses of all participants’ interviews. The theme of help represents participants’ expectations that they will receive help on the ward, and their experiences of trying to get this help. Safety represents participants’ expectations pertaining to the ward’s function in keeping them safe, their experience of threat and strategies to keep safe. The theme of power represents participants’ experiences of power relations within the acute ward. I conclude that participants’ experiences of being a patient on the ward are characterised by feelings of frustration, concerns about safety, and the perceived need to focus on self-presentation as they attempt to reach their desired goal of discharge.

Background: Diabetes is a chronic metabolic disease and an increasing public health problem. Treatment of type 1 diabetes requires daily insulin injections. Young people living with diabetes may feel that they do not fit in among others of the same age. Aim: Illustrate young people's experiences of living with diabetes type 1. Method: This study was a qualitative literature-based study with an inductive approach. The result was based on 10 qualitative scientific articles. Result: The analysis resulted in three main themes and seven subthemes. The main themes were: To live in a process of adaptation, A buffet of challenges and How the social surroundings impact the life. Conclusion: The results showed that young people who lived with type 1 diabetes felt that they had to adapt their lives to the disease. For young people it was also important to become independent in their illness. It was obvious that living with type 1 diabetes was an experience of both physical and mental challenge, and the people in the studies expressed a desire to be normal and to be able to compare themselves with others. The social surroundings had a clear impact in many ways, though the support from the environment was perceived as valuable. / Diabetes typ 1 är en ständigt ökande folksjukdom som ofta drabbar unga människor. Diabetes typ 1 är en kronisk ämnesomsättningssjukdom som ställer krav på den unga individen och skapar utmaningar i vardagen. Unga som lever med diabetes påverkas av sin omgivning och är i behov av stöd på olika sätt. Diabetes innebär att individen ständigt har förhöjda blodsockernivåer, till följd av brist på insulin. Unga människor lever i en turbulent period av livet, och att leva med en kronisk sjukdom kan förhindra en utveckling av den egna identiteten. Egenvården upplevs som en viktig del på vägen mot självständighet hos de unga, och sjuksköterskan har en central del i att hjälpa den unga individen att främja hälsa. Syftet är att belysa unga människors upplevelse av att leva med diabetes typ 1. Tio kvalitativa vetenskapliga artiklar har använts som material i resultatet. Resultatet visar att sjukdomen kräver en anpassning av livet. Det är en dragkamp om ansvaret för sjukdomen mellan de unga och deras föräldrar, då självständighet anses viktigt av unga människor för att uppnå frihet, vilket relateras till begreppen livsvärld och hälsa. De unga upplevde både känslomässiga och praktiska utmaningar i livet med diabetes, vilket diskuteras i relation till livskvalitet. En önskan om att få vara normal och kunna jämföra sig med andra i samma ålder finns, eftersom det är en betydande del i de ungas sökande efter en egen identitet. De unga anser att omgivningen påverkar dem på olika sätt, stödet från vänner och familj upplevs som betydelsefullt.

Background: Each year, thousands of patients around the world receive a new heart through heart transplant surgery. This is a lifesaving action and is most common among people with a heart disease that has led to a severe and non-treatable heart failure, for instance cardiomyopathy. But the process of receiving a new heart comes with challenges and the patients can experience emotional and physical difficulties. Aim: The aim of this study was to illuminate adult patients' experiences after heart transplantation. Method: A literature-based study was conducted and fourteen scientific qualitative articles were analyzed with a qualitative approach. Results: After analyzing the results, three main themes emerged; "To receive someone else's heart", "Learning how to live" and "To experience difficult emotions". Each main theme had three significant subthemes. The findings showed that a diversity of experiences arose among the patients after undergoing heart transplant surgery. They experienced gratitude, faith, concern, existential thoughts and sadness. They expressed support and the pursuit of gaining control in daily life as meaningful and essential. But they also had to handle limitations in their lives concerning the medical treatment, the continuous follow-ups and the diet restrictions. Conclusion: As a nurse it is fundamental to see the heart transplant patient as a unity and a unique person. Thus it is important to notice the patients' psychological difficulties that can arise after heart transplantation and not only observe the physical problems. Communicate with the patients in a motivating and caring way and try to understand their individual experiences of the situation in order to promote their health. In that way we can lay a valuable foundation for nursing.

Titel: Erfarenheter av stigmatisering i hälso- och sjukvården bland personer som drabbats av HIV - En litteraturstudie. Bakgrund: HIV (Humant Immunbrist Virus) har länge varit förknippat med stigmatisering eftersom okunskap och osäkerhet fortfarande förekommer beträffande smittvägar och smittbarhet.                                                                                                           Syfte: Syftet med studien var att belysa erfarenheter av stigmatisering i hälso- och sjukvården bland personer som drabbats av HIV. Metod: En litteraturstudie genomfördes med tio stycken kvalitativa artiklar från åtta olika länder. Artiklarna granskades, analyserades och sammanställdes.                                                                                                               Resultat: I resultatet presenteras två kategorier och fem underkategorier. Kategorierna är: Att bli bemött med bristande vård handlingar och upplevelser av integritetskränkning. Underkategorierna är: Överdrivna säkerhetsåtgärder, ignorant bemötande, bristande sekretess, kränkande kroppsspråk och kränkande verbal kommunikation. Konklusion: Bristande kunskap om HIV kan internationellt ses som en bidragande faktor till att patienter än idag upplever varierande stigmatiserade bemötande från vårdpersonal. För att motverka stigmatiseringen krävs forskning som kan generera kunskap om hur vårdpersonal kan ge ett bättre bemötande och att denna kunskap sprids till vårdpersonal. Nyckelord: HIV, stigmatisering, patientupplevelse, diskriminering. / Title: Experiences of stigma in health care among people affected by HIV- A literature review Background: HIV (Human Immunodeficiency Virus) has been associated with stigmatization for a long time because of ignorance and uncertainty still exists regarding the transmission routes and infectivity. Aim: The aim for the study was to highlight experiences of stigma in health care among people affected by HIV. Method: A literature study was conducted with ten qualitative articles from eight different countries. The articles were examined, analyzed and compiled. Results: The result generated two categories and five subcategories. The categories are: To be treated with a lack of care actions and experiences of integrity violation. The sub-categories are: excessive security measures, ignorant attitudes, lack of secrecy, offensive body language and abusive verbal communication.                                                                   Conclusion: Lack of knowledge about HIV can be seen internationally seen as a contributing factor to the patients still experiencing varying stigmatized treatment by health professionals. To counteract the stigma requires research that can generate knowledge on how health professionals can provide better treatment and that this information is disseminated to the medical staff. Keywords: HIV, stigmatization, patient-experience, discrimination.