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.

Bakgrund: Demenssjukdom förväntas öka i framtiden vilket kan komma att påverkaröntgenkliniker samt avdelningar som möter patientkategorin. Det finns svårigheter att undersöka patienter med demenssjukdom på grund av beteendeförändringar, agitation samt röntgensjuksköterskans korta möte. Det är därför av vikt att sammanställa den forskning som finns inom ämnet idag. Syfte: Att beskriva röntgensjuksköterskors, röntgensjuksköterskestudenters samt sjuksköterskors erfarenheter av att vårda patienter med demenssjukdom. Metod:En litteraturstudie vars resultat är uppbyggt på åtta kvalitativa studier. Databaserna som användes vid artikelsökning var Cinahl, Pubmed och Scopus. Analysen har varit inspirerad av Fribergs metod. Resultat:Tre huvudkategorier och nio underkategorier skapades efter analys av samtliga studier. Huvudkategorierna omfattar: Uppfatta orsaker till olämplig vård för personer med demenssjukdom, erfara svåra utmaningar vid behandling av patienter med demenssjukdom och uppleva faktorer som påverkar personcentrerad vård av patienter med demenssjukdom. Konklusion:Det korta vårdmötet begränsar möjligheten för vårdare att ge patienter med demenssjukdom god vård, vilket indikerar behovet av att avsätta mer tid till patienter med demenssjukdom. Kunskapsbrist har visats vara ett återkommande problem vid vård av demenssjukdom och ökad utbildning kan vara en adekvat åtgärd. Nyckelord: Radiografi, personcentrerad vård, beteendemässiga utmaningar, individuell erfarenhet / Background: Dementia will increase in the future which can affect radiology clinics and hospital departments caring for patients with dementia. There are difficulties examining patients with dementia due to behavioral changes, agitation and the limited time radiology nurses spend with patients. Therefore it is important to summarize current research on the subject. Aim: Describe the experiences of diagnostic radiology nurses, students in radiology nursing programs and general nurses when caring for patients with dementia Method:A literature review of eight qualitative studies using Cinahl, Pubmed and Scopus databases to discover articles. The analysis was inspired by Friberg’s method. Results:Three main categories and nine subcategories were identified after analysis. The main categories were; caregiver perceived reasons for inappropriate care of patients with dementia, difficult challenges experienced while treating patients with dementia, and perceived elements that affect personalized patient-centered care for those with dementia. Conclusion:The limited time allocated to attend to patients, limits the ability of caregivers to provide good care. This indicates a need to devote additional time for patients with dementia. A lack of knowledge was identified in dementia care, where increased education can be an adequate measure. Keywords: Radiography, patient-centred care, behavioural challenges encountered, individual experiences

Bakgrund: På ECMO-centrum behandlas patienterna med hjälp av hjärt-lungmaskin. De har ofta multiorgansvikt vilket ställer höga krav på sjuksköterskorna då de ansvarar för patienternas totala omvårdnadsbehov. I och med flytten till NKS förändrades vård- och arbetsmiljön då man gått från öppen vårdmiljö till enskilda vårdrum. Syftet med studien är att beskriva ECMO-sjuksköterskors uppfattningar om hur vård- och arbetsmiljö har påverkats efter flytten till NKS. Metod: Arbetet genomfördes med en kvalitativ metod, med induktiv ansats. För att besvara studiens syfte valde författarna att använda sig av fokusgruppsintervjuer med sjuksköterskor anställda vid ECMO-centrum. Två intervjutillfällen genomfördes under november 2017. Intervjuerna transkriberades ordagrant av båda författarna och analyserades med en kvalitativ innehållsanalys. Resultat: I den nya vård och arbetsmiljön uppfattade sjuksköterskorna att lokalernas utformning utgjorde ett hinder för att bedriva god och säker omvårdnad. Att arbeta i enskilda vårdrum har lett till ökat ensamarbete och möjlighet till rast och kunskapsutbytet har försämrats. En sorg och frustration finns över att inte ha fått ha möjligheten att påverka vård och arbetsmiljö. Slutsats: Vikten av att känna delaktighet och möjligheten att kunna påverka är en förutsättning för att skapa en bra vård- och arbetsmiljö. / Background: At the ECMO Centre patients are treated with a heart-lung machine. Often they suffer from multiple organ failure which places high demands on the nurses as they are responsible for the total nursing care of these patients. With the move to the Nya Karolinska Solna (NKS) the working environment has changed so that all patients are treated in single- patientrooms. The aim of this study is to describe the ECMO nurses perception of how the nursing care and working environment has been affected by the move to NKS. Method: The study was conducted using a qualitative method, with an inductive approach. Focus group interviews were held with nurses employed at the ECMO Centre with the aim of reaching answers in regards to the purpose of the study. Two rounds of interviews were completed in November 2017. The interviews were transcribed word for word by both authors and analysed with a qualitative content analysis. Result: In the new care and working environment, nurses perceived that the design of the premises was a barrier to pursuing good and safe care. Working in single bedrooms has led to increased loneliness and the possibility of taking a break and the exchange of knowledge has deteriorated. There is a sadness and frustration that they didn’t have an opportunity to affect the health and work environment. Conclusion: The importance of feeling participation and the ability to influence is a prerequisite for creating a good health and work environment.

The Patient-Centred Assessment of Symptoms and Activities (P-CASA) is a new idiographic, open-ended assessment that examines each individual patient’s symptoms within the context of his or her daily life. P-CASA asks patients for their most important activities, what interferes with these activities, and any coping strategies. This thesis presents the rationale and design of P-CASA and its first validation study. Sixty patients at the Pain and Symptom Management/Palliative Care Clinic of the BC Cancer Agency (Vancouver Island Centre) completed P-CASA and the Edmonton Symptom Assessment System (ESAS), which is the current nomothetic assessment at the Clinic. The results demonstrated that P-CASA was not redundant with ESAS because it assessed (a) information about patients’ activities and coping strategies, which the ESAS does not; (b) all relevant cancer-related symptoms (not just pain or a fixed list); (c) co-occurring symptoms; (d) more specific details and different priorities about symptoms than in their ESAS. / Graduate

Patient-centred care has become an important model for health-care delivery, especially in cancer care. The implementation of this model includes patient-centred communication between the clinician and his or her patient. However, most research on patient-centred communication focuses on the clinicians’ initiative: what clinicians should do and what information they should seek to elicit from patients. It is equally important to recognize what each individual patient can contribute about his or her unique perspective on the disease, its treatment, and the effects on what is important to this patient. This thesis reports the development of a system for analyzing over 1500 utterances made by patients in eight video-recorded oncology consultations at the British Columbia Cancer Agency, Vancouver Island Centre. The analysis distinguishes between biomedical information that the patient can provide and patient-centred information, which contributes the individual patient’s unique perspective on any aspect of his or her illness or treatment. The resulting analysis system includes detailed operational definitions with examples, a decision tree, and .eaf files in ELAN software for viewing and for recording decisions. Two psychometric tests demonstrated that the system is replicable: high inter-analyst reliability (90% agreement between independent analysts) on a random sample of the data set and cross-validation to the remainder of the data set. A supplemental idiographic analysis of each consultation illustrates the important role that patient-centred information played in these consultations. This system could be an important tool for teaching clinicians to recognize the individual information that patients can provide and its relevance to their care. / Graduate / 0992 / 0451 / 0350 / shealing@uvic.ca

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: Bedside-överrapportering är avsedd för att möjliggöra patienternas delaktighet och vara ett personcentrerat tillvägagångssätt där patienternas expertinformation tillvaratas. I tidigare forskning beskriver sjuksköterskorna patienterna som en oanvänd resurs i överrapporteringar (icke bedside). Dessutom erfar sjuksköterskorna tidsbrist och att rapporter var ofullständiga. Patienterna uppskattade i sin tur bedside-överrapportering eftersom de upplever en större kontroll och delaktighet. Dock erfars en utmaning kring känslig information och konfidentialitetsfrågor. Problem: Sjuksköterskorna har en central roll i att möjliggöra patienternas delaktighet och deras erfarenheter anses kunna bidra till en bättre förståelse för utmaningar och möjligheter i bedside-överrapportering. Syfte: Att skapa en kartläggning av sjuksköterskornas erfarenheter av bedside-överrapportering. Metod: Allmän litteraturöversikt för att skapa en översiktlig bild grundad i en analys av 10 artiklar. Resultat: Sjuksköterskorna erfor att patienterna blev mer delaktiga vid bedside-överrapportering och att personcentrerad vård främjades eftersom patienterna hamnade i fokus. Sjuksköterskorna beskrev även utmaningar i bedside-överrapporteringar i huruvida konfidentilitet och integritet röjdes samt avbrott och tidsbrist. Trots detta sågs även förbättringar som att överrapporteringarna erfors bli mer korrekt och komplett och kommunikationen ansågs förbättrad. Utöver detta upplevde sjuksköterskorna sig mer nöjda. Slutsats: Sjuksköterskorna uttryckte en förbättring i patientdelaktighet, personcentrering, kommunikation och rapportering. Dock fanns hinder i patientdelaktighet och problem gällande tidsaspekten och konfidentialitetsfrågor. / Background: Bedside handoff is a person-centred approach that aims to enable patient-participation and ensure the patients’ expert information is utilised. In earlier research nurses describe patients to be an unused resource. Furthermore, nurses find that lack of time and incomplete reports are problems in patient handoffs. Patients appreciate bedside handoffs because they feel more involved and in control. However, there is a perceived challenge concerning sensitive information and confidentiality issues. Problem: Nurses have a crucial role in enabling patient participation and their experiences are considered to help form a greater understanding of the challenges and possibilities relating to bedside handoffs. Purpose: To create an overview of nurses’ experiences of bedside handoff. Method: General literature review to create an overview founded in the analysis of 10 articles. Results: Nurses experienced that patients became more involved with bedside handoffs and that person-centred care was promoted because patients became the focus. Nurses also described challenges with bedside handoff in whether confidentiality and integrity were jeopardised. Moreover, challenges such as interruptions and lack of time were found. Despite this, improvements were also seen such as a more accurate and complete report, and improvements in communication. In addition, nurses felt more satisfied using bedside handoff. Conclusion: Nurses experienced an improvement in patient-participation, person-centred care, communication and in the report itself. However, there were barriers to patient-participation, time limits and confidentiality issues.

Magister Scientiae (Nutrition Management) - MSc(NM) / Introduction: The provision of quality nutrition care services is needed to address the national burden of diseases, and to reduce under- and overnutrition in South Africa. Globally, there is a lack of information and data about the perceptions, experience of, and satisfaction with the quality of nutrition care services, both from patients and dietitians. Patients and dietitians are in the best position to provide useful information pertaining to their perception and experience of nutrition care service delivery. The aim of this study was to determine the perceptions of patients and dietitians on the quality of nutrition care service delivery in the Klipfontein/Mitchells Plain Sub-Structure (KMPSS). Methodology: This cross-sectional descriptive study design employed a mixed method approach. All patients consulted by the dietitians on the dates of data collection were conveniently sampled (n=120) across three Primary Health Care facilities in KMPSS (Hanover Park Community Health Centre (CHC), Mitchells Plain CHC and Heideveld Community Day Centre (CDC)) for participation in the quantitative component of the study. An interview-administered survey was used to gather information about patients’ perceptions and experiences of nutrition care services. For the qualitative component, an all-inclusive sample of the four dietitians’ employed in KMPSS participated in a Focus Group Discussion (FGD). The FGD included open-endAnalysis: The Statistical Package for Social Sciences (SPSS) software was used to generate descriptive statistics for the quantitative data. Thematic analysis was used for the transcriptions of the FGD audio-recordings. The themes and sub-themes was identified through summaries and key findings on the perceptions of the quality of nutrition care service delivery through views and opinions.ed questions developed by the researcher to explore the perceptions of the dietitians on the quality of nutrition care service delivery. Results: The quantitative results found that participants strongly agreed with positive statements regarding the dietitians’ interpersonal skills, manner in which they presented themselves, and communicating health information. Nearly 80% of the participants perceived dietitians as being well presented, courteous, friendly, and polite, created a comfortable environment and were always on time for their appointments. Eighty percent (80%) of the participants were also satisfied with the nutrition care services provided by the dietitians in KMPSS. The qualitative findings revealed that the dietitians’ had both negative and positive perceptions of the nutrition care service delivered within KMPSS. The dietitians’ expressed the need to improve the quality of nutrition care through management making and availability of necessary resources. This would enhance their work performance, communication and leadership skills. Conclusion: The key results and findings of this study concur with other research that has been done within the dietetics profession. There is a need to promote quality nutrition care in dietetics by utilizing perceptions and experiences of patients and dietitians. It is imperative for continuous quality improvement initiatives in nutrition care to improve patient health outcomes in South Africa.

Bakgrund Våld mot kvinnor i nära relationer är ett stort globalt och nationellt samhällsproblem där kvinnor oftare utsätts för grövre våld än män. Våld i nära relationer kan bestå av psykiskt, sexuellt, fysiskt, ekonomiskt, digitalt och materiellt våld. Kvinnors fysiska och psykosociala hälsa påverkas negativt. Som sjuksköterska behöver man vara väl förberedd på hur man bemöter kvinnor som drabbats av våld och stödja till att främja hälsa i mötet med drabbade kvinnor. Syfte Syftet med litteraturöversikten var att beskriva sjuksköterskors upplevelser av att möta kvinnor som drabbats av våld i nära relationer. Metod Litteraturöversikten grundar sig på tio utvalda vetenskapliga originalartiklar av både kvalitativ och kvantitativ metod. Datainsamlingen genomfördes i Cinahl Complete, PubMed samt PsycInfo. Resultat Litteraturöversikten ledde fram till tre teman. Det första temat var Brister i organisation och kompetens med tillhörande underteman Tidsbrist, Kunskapsbrist samt Behov av utbildning gällande våld i nära relationer. Tema två speglar Att våga ställa frågan om våld med underteman Relationsskapande, Att fråga om våld som en rutinåtgärd och Underlättande faktorer. Tema tre berör Emotionella aspekter av att möta kvinnor utsatta för våld med underteman Svårigheten att hålla den professionella rollen och Att ställa den svåra frågan. Sammanfattning Resultatet i litteraturöversikten visar att sjuksköterskans kompetens i mötet med kvinnor som utsatts för våld var bristfällig. Det fanns en kunskapsbrist i omvårdnaden och otydliga rutiner på organisationsnivå. I vårdmötet var relationen och dialogen gällande frågan om våld central och därmed var tiden och platsen för samtalet viktig att ta hänsyn till. För att sjuksköterskan i sin profession skall kunna utföra adekvat omvårdnad så behövs det tydliga instruktioner och riktlinjer samt fortlöpande utbildning. Sjuksköterskor påverkas emotionellt i mötet med drabbade kvinnor och omvårdnaden har godare förutsättningar att bli bättre om de har en bredare kompetens gällande när/hur/var de ska ställa frågan om våld. / Background Violence against women in intimate relationships is a major global and national social problem, where women are more often exposed to more severe violence than men. Violence in close relationships can consist of pschological, sexual, physical, financial, digital and material violence. Women`s physical and psychosocial health is negatively affected. As a nurse, you need to be well prepared on how to deal with women affected by violence and support to promote health in the meeting with affected women. Aim The aim of the literature review was to describe how nurses' experiences of encounter women who have suffered violence in close relationships. Method The literature review is based on ten selected original scientific articles and the chosen articles are both qualitative and quantitative method. The data collection is carried out in Cinahl Complete, PubMed and PsycInfo. Results The literature review led to three themes. The first theme was Deficiencies in organization and competence with associated sub-themes Lack of time, Lack of knowledge and Need for training regarding violence in close relationships. The results indicate that further education about violence is needed, as well as guidelines to deal with ignorance and unclear routines. Theme two reflects Dare to ask the question about violence with the sub-themes Relationship building, Asking about violence asa routine measure and Facilitating factors. Theme three concerns Emotional aspects of meeting women exposed to violence with the sub-themes The difficulty of maintaining the professional role and Asking the difficult question. Summary The result in the literature review shows that nurse's competence in meeting with women who have been subjected to violence in close relationships was deficient. There was a lack of knowledge in nursing and unclear routines at organizational level. In the care meeting, the relationship and the dialogue regarding the issue of violence were central, and thus the time and place of the conversation were important to take into account. In order for the nurse in her profession to be able to perform adequate care, clear instructions and guidelines as well as ongoing training are needed. Nurses are emotionally affected in the meeting with affected women and nursing has better conditions to improve if they have a broader competence regarding when/how/where to ask questions about violence.