Patient reported outcome (PRO) measurement of disability is integral to a patient-centered approach to health care and gauging the biopsychosocial impact of health conditions from the patient's perspective. This thesis investigates disability after proximal humerus, elbow and distal radius fractures; conditions that constitute a major burden in musculoskeletal health care and a substantial impact on health-related quality of life (HrQoL). Disability is defined by the World Health Organisation (WHO) International Classification of Disability, Functioning and Health (ICF) as ‘a multi-dimensional construct involving a dynamic interaction between impairment, activity limitations and participation restrictions, that are influenced by contextual factors'. This international, consensus-based framework acts as a guide for the application of outcome measures in performing scientific research. The WHO ICF also considers other patient perspectives on health and health care systems, including patient experience and patient activation within the contextual factors component. Patient experience encompasses aspects such as satisfaction, expectation management and confidence with care, and is measured using a variety of scales and questionnaires. Patient activation relates to 'the knowledge, skills and confidence a person has in managing their own health and health care'. This concept is quantified using patient activation measures (PAMs). The overarching goal of this thesis is to identify the most influential factors predicting disability after proximal humerus, elbow and distal radius fractures. This work also aimed to define the relationship between disability, experience and activation to inform the development of a patient-centred approach to managing these challenging injuries. The first systematic review highlights the dominance of psychosocial factors in influencing disability associated with a range of upper extremity conditions. Few studies have assessed this relationship in specific trauma populations. The second review underlines the paucity of upper extremity PRO measures incorporating fracture populations in their original development. It also reports the highly variable quality of initial studies introducing these measures. The final review demonstrates the superior measurement properties of computer adaptive tests (CATs), a contemporary form of PRO measurement, over fixed-scale instruments. Few studies apply CATs in trauma and few have been performed outside the U.S. These reviews collectively informed the selection of PRO measures for the experimental studies in this thesis. Firstly, a pilot study establishes a methodology for addressing the key objectives and the feasibility of using a web-based platform for measuring patient outcomes. Strong correlation between PROMIS Physical function CAT, a computer adaptive measure of physical function, and the Quick Disabilities of the Arm, Shoulder and Hand (QuickDASH), a region-specific, fixed scale is observed. The core experiment (n=734) expands upon this work and demonstrates correlations between a range of generic and region-specific measures in an upper extremity trauma population. Disability is shown to correlate with satisfaction, and the strength of this correlation increases over time. Applying PRO measures of disability in populations with shoulder, elbow and wrist fractures show that self-efficacy (i.e. coping ability) within 6 weeks of injury was the strongest predictor of medium-term disability at 6-9 months. In proximal humerus and elbow fractures, kinesiophobia (i.e. fear of movement) within a week of injury was also a strong predictor of disability. The final study concludes that greater patient activation is associated with greater health-related and experiential outcomes. However, psychosocial factors including self-efficacy, superseded activation in predicting disability and satisfaction. This thesis contributes evidence for musculoskeletal health care professionals (HCPs) to consider specific psychosocial factors, such as coping abilities, and patient activation early in the recovery process to improve disability following these injuries.

Recent decades have seen increasing recognition of the importance of patient involvement during patient-professional interactions and promotion of preventative and long term approaches to healthcare for those with long-term conditions. The concepts of 'shared decision making' and 'personalised care planning' have both been advocated by patient groups, policy-makers, professional bodies and academia as best practice. During shared decision making, patients and healthcare professionals work in equal partnership to decide the best course of action. Shared decision making is a central tenet of personalised care planning, as it aims to foster partnerships between patients and healthcare professionals when making decisions, but personalised care planning also describes an overall approach to healthcare that is forward-planning and preventative, rather than episodic and reactive. Despite the breadth of support for such approaches, in reality they are not routinely adopted. Multiple Sclerosis (MS) is a heterogeneous neurodegenerative long term condition, which is unpredictable with limited treatments available. Such uncertainty and complexity position MS as an interesting long term condition to explore decisional and information needs. This doctoral research comprises of three methods stages. Firstly, two systematic reviews assessing the effectiveness of personalised care planning for people with long-term conditions and people with MS were carried out. Secondly, 22 in-depth semi-structured qualitative interviews were carried out with people with MS across the UK to explore experiences of decision making and interactions with healthcare professionals. Purposive sampling was carried out and data saturation determined sample size. A modified grounded theory approach was used and thematic analysis of interview data was carried out. Lastly, a series of structured qualitative interviews were carried out with 6 consultant neurologists. This stage was iterative in that problematic areas identified during analysis of interview data from stage 2 were presented to neurologists in infographic form to further examine issues raised. Framework analysis was carried out on neurologist interview data to examine their interpretations and potential solutions. Although there appears to be some evidence demonstrating that personalised care planning is effective for people with long term conditions, such favourable effects were not demonstrated in the context of MS. Based on the findings from the systematic reviews it is unclear whether personalised care planning is effective for people with MS and there is a clear gap in the literature examining this. Findings from the interview stages suggest there are key areas which are lacking in terms of information and decisional support. Such areas included the type and amount of information around the time of diagnosis, support when choosing disease modifying drugs and discussions about approaches outside mainstream medicine. Findings from neurologist interview data corroborated those from MS interview data, but through examination of issues raised it also highlighted some of the complexities and challenges of involving patients and enacting shared decision making in reality. This research identified key areas that require improvement for people with MS in terms of provision of the information and decisional support. Although in theory personalised care planning and shared decision making are positioned as best practice, in reality it is unclear whether they are effective or appropriate for people with MS. The way in which such approaches are enacted are complex and require careful consideration. Potential barriers and pitfalls identified within this study suggest a lack of clarity in how to respond to challenges and further investigation into how patient involvement is enacted is needed.

Bakgrund: Bröstcancer är den vanligaste cancerformen bland kvinnor globalt sett. År 2016 drabbades 7 500 kvinnor av bröstcancer i Sverige och av dessa avled 1400 kvinnor på grund av sjukdomen. Vidare behandlas 90 % av kvinnorna kirurgiskt och mastektomi, som primär kirurgisk behandling, ökar bland alla åldersgrupper. Ärret som blir kvar på kroppen är en ständig påminnelse om sjukdomen. Syfte: Att beskriva bröstcancerdrabbade kvinnors upplevelser efter genomgången mastektomi. Metod: En kvalitativ litteraturöversikt med induktiv ansats gjordes där 10 kvalitativa artiklar inkluderades. Resultat: Kvinnor upplevde på flera sätt att kroppen förändrades och att deras självbild påverkades. Förändringar i det sociala livet förekom och kvinnor upplevde ett behov av stöd. Vidare uppkom existentiella funderingar hos kvinnorna, som bland annat en förändrad syn på livet. Slutsats: Resultatet kan leda till att vårdpersonal, men också människor i samhället får en ökad kunskap och förståelse för kvinnor som genomgått en mastektomi. Som sjuksköterska är det viktigt att vara öppen för alla kvinnors upplevelser och tillämpa personcentrerad omvårdnad i bemötandet. / Background: Breast cancer is the most common form of cancer among women around the world. In 2016, 7 500 women in Sweden received the diagnosis and of these, 1 400 passed away. Of all women, 90 % is treated surgically, and mastectomy as primary treatment increases among all ages. The scar becomes a constantly reminder of the disease. Aim: To describe the experience of mastectomy as a treatment among women with breast cancer. Method: A qualitative literature review with inductive approach where 10 qualitative articles were included. Results: Women experienced that their bodies changed in many ways. Also, their body image was affected. Changes in their social life occurred and women experienced a need of support. Furtherly, existential questions appeared, such as seeing life in a new perspective. Conclusion: The result can lead to an increased knowledge in the society and health professionals which can lead to a better understanding for the women who had undergone a mastectomy. As a nurse it is important to respect every unique experience and apply person centered care in the treatment.

Bakgrund: Varje år diagnosticeras flera miljoner människor med cancer. Cellerna i kroppen kan mutera och bilda tumörer. En elakartad tumör räknas som en cancertumör. Vid behandling av cancer tar ansvarig läkare ställning till ifall patientens cancersjukdom går att bota eller om behandling ska vara lindrande, det vill säga palliativ. Den palliativa vården ska ske på patientens villkor, utformat utifrån personcentrerad vård. Individen ska respekteras och bemötas som en unik person. Patienten har rätt till självbestämmande, tydlig information, att bevara sin integritet samt att få symtomlindring. Syfte: Syftet är att undersöka hur patienter med en cancersjukdom som vårdas palliativt på slutenvårdsavdelning upplever bemötandet från hälso- och sjukvårdspersonal. Metod: Databaserna CINAHL Complete och Medline with Full Text användes vid informationssökning. Införskaffat material granskades och godkändes av båda författarna. Resultat: Resultatet belyser patienters upplevelser av hälso-sjukvårdspersonalens bemötande. Studien resulterade i två teman. Tema ett: Hälso- och sjukvårdspersonalens förhållningssätt med två underteman: Närvaro och engagemang och förtroende och respekt. Tema två: Kommunikation och information, utan underteman. Diskussion: Resultatet diskuterades utifrån Rosemarie Rizzo Parses teori där begreppen tillit och misstro identifierades. Patienterna upplevde att engagemang, ärlighet och medlidande var viktigt i bemötandet. Upplevelserna diskuterades utifrån Parses teori om Human Becoming och annan litteratur. / Background: Millions of people are yearly diagnosed with a cancer disease. The cells in the body can for different reasons mutate and become tumours. If the tumour is determined as bad it’s considered cancerous. The responsible physician takes a stand if the cancer disease is treatable or if the treatment should be palliative. The palliative care should be shaped from the terms set by the patient. The patient ought to receive care from healthcare staff, where they respect the individual and treat them in a kind manner, so called person centered care. The patient is to be encouraged to have the freedom to control their own life, the right to information, preserve their integrity and receive adequate alleviation of symptoms.   Aim: A literature review over how patients with a cancer disease experience the encounters with healthcare professionals in inpatient palliative wards. Method: The databases CINAHL Complete and MEDLINE with Full text were used for information retrieval. The retrieved information was audited and approved by both authors. Results: The results highlight patient experiences of the professional-patient relation. The study resulted in two themes. The first theme: Healthcare Professional’s approachment with two subtopics: Presence and commitment and trust and respect. The second theme: Communication and information, without subtopics. Discussion: The results were discussed on the basis of Rosemarie Rizzo Parse's theory after the subjects trust and mistrust were identified. Patient experienced that involvement, honesty and benevolence were important. The experiences were discussed based on Parse's theory about Human Becoming and other literature.

As the occurrence of obesity increases amongst young people, so increases the risk of more people suffering from heart failure as early as during middle age. The aim is to describe the life experiences of middle aged persons living with chronic heart failure. The literature study is based on twelve published, qualitative, and scientifically proved articles derived from MedLine and Cinahl using queries representing the subject, as well as from manual searching in ScienceDirect and LIBRIS. These articles have been analyzed from a life world perspective. Four main themes and four sub themes were identified from the articles' results. The main themes are "The social life", "Quality of life", "Body failing", and "the Economical impact of chronic heart failure". These represent the main areas where the patients feel the greatest loss due to their condition. The discussion reveals the importance of informing the patients of the common prevalence of the feelings described in this study. Also, the nurse should function as a coach for self-care with continuous follow-ups. The result of this study will hopefully increase the understanding of the heart diseased patients' life situations. / I takt med att förekomsten av kraftig övervikt ökar bland unga, ökar även risken för att fler personer drabbas av hjärtsvikt redan i medelåldern. Syftet är att utifrån befintlig forskning beskriva medelålders personers upplevelser av hur det är att leva med kronisk hjärtsvikt. Litteraturstudien baseras på 12 publicerade, kvalitativa och vetenskapliga artiklar efter sökning i MedLine och Cinahl med specifika sökord som representerade ämnet. Manuella sökningar utfördes i ScienceDirect och LIBRIS. Artiklarna har analyserats utifrån ett livsvärldsperspektiv. Ur artiklarnas resultat identifierades fyra teman och sex subteman. Huvudteman är ”Det sociala livet”, ”Livskvalitet”, ”Kroppen sviker” och ”Ekonomiska aspekter”. Huvudteman skildrar patienternas upplevdelser av att leva med kronisk hjärtsvikt. I diskussionen framkommer att det är viktigt för en patient med kronisk hjärtsvikt att få bekräftat att upplevda känslor är vanligt förekommande. Vidare bör sjuksköterskan fungera som en vägledare för egenvård med kontinuerliga uppföljningar. Förhoppningen är att resultatet från denna studie ska öka förståelsen för hjärtsjuka patienter inom ramen för hälso- och sjukvård.

Isolated hip fracture following a minor fall is a serious injury, normally requiring urgent surgical treatment and a complex recovery journey. Although commonly associated with the elderly, incidence and impact in adults under 60 years of age may be underestimated. The extensive literature almost exclusively focuses on the elderly, surgical interventions and relatively short-term outcomes. Young adults are also missing from the dominant societal discourse and healthcare policy on fragility hip fracture. They therefore represent a silent sub-subset of the fragility hip fracture population, whose recovery experiences and needs, particularly in the longer term, remain largely unknown. A critical interpretivist approach and The Silences Framework (Serrant-Green, 2011), were used to ‘give voice’ to young adults with isolated hip fracture. Thirty participants, between one and ten years post injury, completed an in-depth, minimally structured interview in which they told their story of recovery. An inductive, thematic analysis was undertaken integrating Braun and Clarke (2006) and the four phase cyclical analysis of The Silences Framework (Serrant-Green, 2011). One cross-cutting theme: Communication emerged, together with four other main themes: Experience of care, Impact on self, Impact on others and Moving forward. 11 The findings indicated wide variation in the quality of care, often influenced by social and professional norms regarding hip fracture patient characteristics such as age and mode of injury. Multi-faceted, often long term, physical, social and psychological impact on participants, their family and wider social networks was also found. This included Post Traumatic Stress Disorder type symptoms and impact on work, finances and relationships. The study highlighted some limitations of the current hip fracture care pathway for supporting the specific recovery needs of young adults. It also identified some limited effectiveness of commonly used patient reported outcome measures for hip fracture in this young client group. Exploring the recovery experiences of this under-represented group confirmed, but also altered the silences initially identified. Furthermore, it uncovered new silences which informed recommendations for future research; healthcare practice and policy. This study offers the first long term exploration of the impact of isolated hip fracture following a minor fall in young adults from their perspective. In doing so, it has also demonstrated the appropriateness of The Silences Framework (Serrant-Green, 2011) for guiding a person-centred, experience-based, acute orthopaedic/rehabilitation study undertaken by a student researcher.

Background: Since the 1980s, Saudi Arabia’s socio economic transformation has led to vast social development. As a result there has been increased adoption of behaviours such as smoking and sedentary life styles, which pose a risk to health. It is anticipated that cancer incidence will double over the next two decades and it is thus vital that high quality of care is provided to meet the growing health care demands. Moreover, it is important that patients are satisfied with their care provision. This thesis begins with a narrative synthesis of the existing literature about patient satisfaction in the Saudi context and beyond. An evaluation of the key concepts for understanding patient satisfaction illuminated the lack of evidence about the assessment of patient satisfaction including specific key domains of the structure and process of care. This evaluation also indicated the need to further investigate the Saudi patient perspectives in oncology hospital setting. The aim of my study was to examine the extent to which clinical effectiveness impacts upon patient satisfaction in oncology ward settings in the Kingdom of Saudi Arabia (KSA). Methods: A sequential explanatory mixed methods design was employed. The Donabedian quality framework (1980) and Patient experience model (Reimann and Strech 2010) were used to assess patient satisfaction with quality of care provided. A quantitative phase was followed by a qualitative phase. In the first phase, the European Organisation for Research and Treatment of Cancer (EORTC) IN-PATSAT32 validated questionnaire was used to collect data from 100 adult oncology inpatients at a Cancer Centre in Riyadh. The second qualitative phase involved semi-structured telephone and face to face interviews with 22 adult oncology inpatients who previously answered the questionnaire. Synthesis occurred at the intersection of quantitative Phase 1 and qualitative Phase 2 data. The qualitative Phase 2 thus further explored the satisfaction scores of quantitative Phase1 to deepen the understanding of patient satisfaction in oncology ward settings in KSA. Findings: The main findings were that patient satisfaction levels are influenced by the clinical effectiveness of doctors and nurses, accessibility to health care and socio-demographic factors. Specifically, the interpersonal aspects of care were deemed core to patient experiences in oncology ward settings in KSA. It emerged that doctor-patient relationships, nurse shortages and language barriers are particular areas where changes could be made to improve care, thereby enhancing patient satisfaction. These findings contribute important new insights into the interpersonal aspects of care in the light of the underlying social and cultural contextual factors that influence patient satisfaction in the KSA. Conclusion: This study has provided new evidence supporting the need for stronger interpersonal relations and a more patient-centred approach in the oncology health system in KSA. In particular, the influential role of cultural issues in influencing patient satisfaction in oncology ward settings was apparent. Evidence provided by this research will make a substantial contribution to policy makers and hospital management teams in the KSA wanting to improve patient satisfaction in oncology wards and in other health care settings.

Bakgrund: Diabetes mellitus typ-2 har en inverkan på människor världen över och antal individer med diabetes beräknas öka. Med sjukdomen ökar risken för flera komplikationer som kan sänka livskvaliteten hos patienten. Genom en hälsosam livsstil och god följsamhet i behandlingen går det att minska risken för komplikationer och försämrat sjukdomsförlopp. Det medför ofta stora förändringar i livsstilen hos patienten. Syfte: Beskriva patienters upplevelser av att leva med diabetes mellitus typ-2. Hur förhåller sig patienten till de komplikationer som är kopplade till diabetes mellitus typ-2? Metod: En litteraturstudie med kvalitativ ansats. Data är insamlad från kvalitativa vetenskapliga artiklar som analyserats systematiskt och kategoriserats för att sammanställas till ett resultat.  Resultat: Tre huvudkategorier identifierades berörande förhållning till diabetes mellitus typ-2, förhållning till komplikationer och livsstilsförändringar. Deltagare upplevde överlag svårigheter med att adaptera till förändringar relaterat till kost, fysisk aktivitet i vardagen, kände oro inför risken att drabbas av komplikationer och hade varierande känslor och inställning angående sjukdomen i helhet. Konklusion: Det framgick att det fanns brister i motivation, kunskap om sjukdomen och följsamheten hos deltagarna och flera kände sig emotionellt påfrestade av sin situation. Det är viktigt för sjuksköterskan att känna till hur personer med diabetes mellitus typ-2 själva har för upplevelser av sin situation för att kunna erbjuda en personcentrerad vård. / Background: Diabetes mellitus type-2 has an impact on people worldwide and an increase in the number of patients is expected to rise rapidly. With the disease, the risk increases for several complications that can lower the patient's quality of life. Through healthy living and good compliance in the treatment, it is possible to reduce the risk of complications and worsened disease course. It often causes major changes in the lifestyle of the patient. Aim: To describe patients' experiences of living with diabetes mellitus type-2. How do patients relate to its associated complications? Method: A literature review with a qualitative approach. Data was collected from qualitative scientific articles that have been systematically analyzed and categorized to be compiled into a result. Result: Three major categories were identified referring to how the patient relates to diabetes mellitus type-2, its complications, and lifestyle changes. The participants experience difficulties with adapting to changes regarding diet and exercise. Concerns regarding complications and how it affected them were raised. How the patient related to diabetes mellitus type-2 varied.   Conclusion: There were deficiencies in motivation, lack of knowledge about the disease and lack of compliance among participants and several felt an emotional stress attributed to their situation. It is important for nurses to understand how patients with diabetes mellitus type-2 perceive their situation to be able to offer person-cantered care.

Bakgrund: Diabetes typ 2 är en allvarlig kronisk sjukdom som uppstår antingen via ärftlighet eller osund livsstil och behandlas med livsstilsförändringar. Sjukdomen ger upphov till kroppsliga symtom och komplikationer som kan orsaka påfrestningar, vilket kan orsaka ett lidande för den som drabbas av sjukdomen.   Syfte: Att beskriva hur patienter med diabetes typ 2 upplever livsstilsförändringar.    Metod: En kvalitativ allmän litteraturöversikt baserat på tio originalartiklar, med hjälp av databaserna Cinahl och Pubmed. Inkluderade artiklar kvalitetsgranskades och enbart hög och medelhög kvalité av artiklar valdes. Samtliga artiklar bearbetades och lästes igenom för att få fram kategorier.   Slutsats: Att ha diabetes typ 2 innebär en behandling med främst livsstilsförändringar och en individanpassad vård som ska vara personcentrerat. Hälso- och sjukvårdspersonal bör bli bättre på att informera patienten med diabetes typ 2 om komplikationer som kan uppstå. Dessa komplikationer kan uppstå på grund av att patienten bland annat inte gör sina livsstilsförändringar, såsom kostförändringar. Om patienten har kunskapen om varför det är bra med livsstilsförändringar kan det motivera dem så de kan jobba för att förebygga komplikationer som kan uppstå i samband med sjukdomen.   Nyckelord: Diabetes Mellitus typ 2, patientupplevelse, livsstilsförändringar, omvårdnad, litteraturöversikt

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