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The purpose of this study is to explore care in Ontario, Canada from the perspective of patients. I took on the roles of both a patient and a researcher, exploring the current state of care as a patient who has navigated the health system and as a researcher with background in disability studies and social geography. I use feminist auto/ethnographic methods, including observation and fieldnotes, journaling, memory, and notes in my patient records as data. I also conducted semi-structured in-depth interviews with seven individuals who underwent hip or knee replacement surgery and two family members who provided informal care to individuals post-operatively. I have organized data using three storylines: being patient, negotiating care, and mending fault lines. There are two layers of my analysis: our individual encounters with carers alongside our changing embodiment and the broader care relations of the system, increasingly influenced by neoliberalism. Care is increasingly informalized and commodified as austerity measures cut public financing for care and services are de-listed. Neoliberalism produces poor and precarious working conditions for nurses and personal support workers and this translates into insufficient care for patients and support for families. With care increasingly being shifted to the home and community, individuals and families are taking on more responsibility in terms of caring for family members. / Dissertation / Doctor of Philosophy (PhD) / In this study I explore care in Ontario, Canada both as a patient and as a researcher with background in disability studies and social geography. I observed care and recorded fieldnotes as a patient researcher over thirty-two months and interviewed a total of nine people who underwent hip or knee replacement surgery about their experiences of care pre and post-operatively. Two daughters of participants also took part in interviews. I explore our individual stories of care and how the broader health system helps to shape our encounters with health care workers. Government reductions in funding for care and the de-listing of services translates into poor working conditions for health care workers and insufficient care for patients. The responsibility for care is increasingly being shifted from the state to individuals. My research reveals how patients manage within this fragmented system made up of formal, informal, and private care arrangements.

The biomedical conceptualisation of “depression” as a disease entity stems from biological science rooted in a 17th century paradigm, and is an inappropriately positivist idea which discounts individual agency, disregards social context underscored in the descriptive epidemiology, fails to accommodate inter-subjectivity and process, medicalizes suffering, and serves a managed care model of health administration. A qualitative study using in-depth interviews was undertaken to elicit perspectives from individuals who had lived experience of biomedical (pharmacological) treatment for affective distress and who self-reported having attained satisfactory recovery. Thematic analysis of interview data clustered around three main categories: (1) multifactorial conceptual understandings; (2) context pertinent to the experience of distress and recovery – including a variety of stressors – and (3) trajectories of recovery from acute distress to negotiation of ambivalence toward treatment, enlisting of supports, and reclaiming of agency. Relationships with service providers marked by trust, empathy, and hope were valued as primary difference-makers. / May 2017

Bakgrund: Prostatacancer är den vanligaste cancerformen som drabbar män i Sverige. Sjukdomen skapar olika besvär som påverkar männens dagliga liv. Under sjukdomsförloppet upplever männen att de förlorar sin värdighet. Som sjuksköterska är det viktigt att se till hela patienten och ge en personcentrerad omvårdnad utifrån omvårdnadsdiagnoser. Syfte: Att belysa mäns upplevelse av att leva med prostatacancer. Metod: Litteraturstudie med kvalitativ design. Data hämtades från 12 vetenskapliga artiklar. Resultat: Studien utmynnade i fem kategorier som männen upplevde: informationsbehov, förlorad värdighet, oro för egen dödlighet, upplevelse av olika stöd och anpassning av vardagen. Slutsats: Männens vardag påverkas av sjukdomen prostatacancer och de behöver stöd i olika former. Sjuksköterskan bör möta männen på deras nivå och ge männen en individanpassad omvårdnad. / Background: Prostate cancer is the most common form of cancer that afflicts men in Sweden. The affliction creates different struggles that affect the men’s daily lives. During the progress of the disease the men experience a loss of their dignity. As a nurse it is important to care for the patient as a whole and provide a personal care, related to the nursing diagnosis of the patient. Aim: To shed light on the experiences of the men who are currently living with prostate cancer. Method: A study of literature focusing on qualitative data. Data was gathered from 12 scientific articles. Result: The study led to five categories that the men experienced: The lack of information, loss of dignity, anxiety surrounding own mortality, experience of different support forms and adjustment of the everyday life. Conclusion: The men’s daily lives are affected extensively by the disease prostate cancer and they need different forms of support. The nurse should level with the men in order to provide an individual care.

The landscape of cancer care is evolving and as a result nursing care continues to develop and respond to the changing needs of oncology patients and their families. There is a paucity of qualitative research examining the experience of being an oncology nurse on an inpatient unit. Therefore, a qualitative study using an interpretive phenomenological approach has been undertaken to discover the lived experience of being an oncology nurse. In-depth tape recorded interviews has been conducted with six oncology nurses who worked on two adult inpatient oncology units. Van Manen’s (1990) interpretive phenomenological approach has been used to analyze the data by subjecting the transcripts to an analysis both line by line and as a whole. The overarching theme of the interviews is: Investing to Make a Difference. The themes that reflect this overarching theme are: Caring for the Whole Person, Being an Advocate, Walking a Fine Line, and Feeling Like You are Part of Something Good. Oncology nurses provide care for their patients through a holistic lens that further enhances how they come to know their patients. Over time, relationships with patients and families develop and these nurses share that balancing the emotional aspects of their work is key in being able to continue to invest in their work and in these relationships. Their investment is further evident as oncology nurses continuously update their knowledge, for example, of treatment regimes, medication protocols, and as they champion their patients wishes and needs. As nurses develop their own identities as oncology nurses, they in turn enhance the team with their emerging skill and knowledge. These research findings serve to acknowledge the meaning of oncology nurses’ work and inform the profession’s understanding of what it means to be an oncology nurse.

Background: A wealth of quantitative literature exists exploring the impact of parental alcohol misuse on adult and child offspring. It is often proposed that children of alcoholics are at risk of experiencing a host of negative outcomes, many of which are said to persist into adulthood. Confusing and contradictory results have led researchers to identify a subset of offspring deemed to be resilient. Little remains known about the factors that influence who becomes negatively affected and who becomes resilient, or how these factors are experienced by individuals. The recent up rise of qualitative methodologies also suggest this divide is not clear, with offspring of alcoholics demonstrating a range of functioning. Aim: With this in mind, the current study aims to explore the lived experience of adult children of alcoholics to gather a richer understanding of how these individuals develop into the people they are today. Method: Semi-structured interviews were conducted with six individuals who grew up with at least one alcoholic parent. Interpretative Phenomenological Analysis was used to analyse verbatim transcripts. Results: The analysis produced four master themes. These were: ‘Dealing with the loss of connection to parents’, ‘Feeling hopeless and helpless’, Struggling to stay sane’ and ‘I know who I want to be more than I know who I am’. The master themes and corresponding subordinate themes are discussed in relation to the relevant literature. Clinical implications, methodological considerations and directions for future research are also presented. Conclusions: This study provided insight into the lived experience of being an adult child of an alcoholic. It highlighted the challenges and struggles they faced in childhood and the ways in which they battled to overcome the difficulties they experienced to forge a preferred identity in adulthood. It also emphasised the importance of perceived parental rejection as the pathway to causing distress and the desire to be better than their parents as a pathway to resiliency.

Bakgrund: Tjugo procent av de som vårdar en närstående i Sverige idag är föräldrar som vårdar sina barn i hemmet. Vårdandet är så tidskrävande och omfattande att det innebär stor påfrestning för föräldrarna. Den kontinuerliga kontakten föräldrarna måste ha med sjukvården gör sjuksköterskan betydelsefull. I sjuksköterskans kompetensbeskrivning ingår en stödjande roll till anhöriga. Syfte: Syftet var att belysa föräldrars upplevelse av att vårda sitt allvarligt sjuka barn. Metod: En litteraturöversikt enligt Fribergs (2012) metod gjordes. Översikten är baserad på tolv vetenskapliga artiklar hämtade ur databaserna CINAHL och PubMed. Teman som utkristalliserade sig i artiklarnas resultat delades in i kategorier och subkategorier.  Resultat: Resultatet presenteras i två huvudkategorier med tillhörande subkategorier. Första huvudkategorin “Diagnostillfället” beskriver föräldrarnas känslomässiga upplevelser och sjukvårdens betydelse i samband med diagnostillfället. Andra huvudkategorin “Upplevelser av det konstanta vårdandet” beskriver hur föräldrarna påverkats känslomässigt och socialt, den påverkan vårdarrollen haft på identiteten, svårigheter i kontakten med sjukvården samt det behov av hjälp och stöd som framkom. Diskussion: Resultatet diskuteras med Betty Neumans omvårdnadsteoretiska systemmodell som utgångspunkt. Föräldrarna påverkades på flera plan och sjukvården visade sig ha en betydande roll i detta. Föräldrarna beskrev behov av hjälp och stöd som sjukvården inte tillgodosåg i tillräcklig utsträckning. Sjuksköterskor behöver ha en helhetssyn med fokus på ett individ- och grupperspektiv i både bemötande och utformning av hjälp och stöd. / Background: Twenty procent of people giving care to a relative in Sweden today are parents who care for their severe ill child at home. The care is time-consuming and extensive and becomes a big strain for the parents. The continuous encounters with the health care makes the nurse’s role more significant. The nurse's competence description embrace a supportive attitude towards relatives. Aim: The aim of this study was to describe parents' experience of caring for their severe ill child. Method: A literature review in accordance to Fribergs (2012) method was carried out. The review is based on twelve scientific articles retrieved from the databases CINAHL and PubMed. Themes that emerged in the results of the articles were sorted into categories and subcategories. Results: The results is presented in two main categories with associated subcategories. The first main category "diagnosis" describes parents’ emotional experiences and the significance of the health care system associated with the occasion of the diagnosis. The second main category "experiences of providing constant care" describes how parents are affected emotionally and socially, the impact the caring role had on the identity, difficulties in dealing with the health care system and the need for help and support that were identified. Discussions: The results are discussed using the Neuman systems model as a framework. The parents were affected on several levels and in relation to this the health care system played a significant role. The parents described need of help and support was not fully provided for. To meet these parents in the best way possible, nurses need to have a holistic view with an individual and a group perspective both in approach and design of the health care.