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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.

Current political rhetoric and some media commentaries suggest there is a yawning gap of understanding between policymakers and the reality of families living in poverty in 21st century Britain. A key reason identified for the disconnect between policymakers and families is the absence of the voices of the families in public discourse. In this paper accounts of the lived experiences of parents in poverty are examined in four UK qualitative studies published in the period 1998-2016. Their accounts highlight how problems of disadvantage can be cumulative, compounding and enduring. The struggle to provide the basics of family life and the role of supportive communities and relationships are explored. The impact on parents of financial stress, the sense of shame and stigma often experienced and the consequences for their physical and mental health are highlighted. Under the government’s austerity policy, there is an increase in poverty even in working families, an increase in homelessness and considerable evidence emerging on the damaging consequences of food and fuel poverty on the health of children and parents. Listening to the lived realities of individual families provides a much greater understanding of family poverty and its causes and consequences, provides a corrective to the critical pejorative rhetoric and lays the foundation for the provision of appropriate government support.

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

This thesis explores how newly arrived students experience conditions for learning and inclusion in their lived transitions within the Swedish school system. The thesis deploys an ethnographic approach combining interviews with participant observation. The data comprise interviews with 22 students at three points in time and three cycles of participant observation over the course of 15 months (in three municipalities of different sizes). Deploying the concept of post-migration ecology, Study I maps the structural conditions that the educational landscape offers newly arrived students after migration to Sweden. The findings point to the emergence of a parallel school system through which the newly arrived students’ individual needs risk being overlooked. Study II uses a sociocultural perspective to compare the pedagogical and social resources offered in introductory and regular classes, concluding that introductory classes are characterised by weak challenges and strong support, whereas the opposite is true for regular classes. From a critical phenomenological perspective, Study III focuses on the individual students’ embodied experiences of being out of line in school (in a Swedish monolingual school setting). Paradoxically, the separate introductory class in this setting apparently offers a sense of inclusion, whereas the regular class is related to student experiences of exclusion. Study IV analyses temporal aspects of the students' lived transition to upper secondary school. Drawing on a phenomenology of blockage, it documents how extended periods in introductory programmes create a disjunction between the students' imagined and lived school careers. In brief, through analyses that encompass organisational and structural conditions, as well as lived experience, this thesis shows that the lived transitions of newly arrived students can be understood as instances of parallel school lives, a discontinued past and a postponed future. / <p>At the time of the doctoral defense, the following paper was unpublished and had a status as follows: Paper 4: Manuscript.</p> / Newly arrived children and learning - a cross-disciplinary study on the learning conditions for newly arrived children in Swedish schools

The purpose of this research was to understand the meaning of caring as narrated, lived, moral experience. Forty-five good nurses experienced in the care of patients in surgical, medical and geriatric wards were interviewed. They described their experience of; caring, caring abilities, the worthwhile of caring, the strength related to caring and narrated situations (n=88) in which they had experienced that their caring had made a difference to the patient. Surgical nurses described care and cure as an integrated whole, medical nurses described care as integrated with the patients' social context and geriatric nurses described care as enhancing the autonomy of patients (I). The nurses' narrated, lived, experiences of caring situations revealed ways of intervening and interacting with the patient including caring actions (II). Eighteen good nurses experienced in the care of cancer patients were also interviewed. Their narrated, lived experiences of morally difficult care situations i.e. situations where it had been hard to know what was the right and good thing to do for the patient (n=60), revealed that relationships with their co-workers were very important for their possibility to act according to their moral reasoning and feelings(III). The situations for the nurses were either disclosed as overwhelming or possible to grasp. When narrating about these situations the nurses used different terms about themselves and their co-workers (One, They, I and We). The nurses viewed the patients either as a task to be accomplished or as a valuable unique person. In the latter situations ethical demands were interpreted, judged and acted upon (IV). Interpretations of these nurses' skills in managing morally difficult care situations disclosed two levels; one group of nurses who described positive paradigm cases, liberating maxims and disclosed open minds, while the other group described negative paradigm cases, restrictive maxims and revealed closed minds. The latter nurses were mostly the nurses who disclosed in Paper III that they used the term "one" about themselves and "they" about their co-workers (V).en patients recently cared for at surgical and medical wards were interviewed(IV). They narrated lived experiences of receiving/not receiving the help they needed or wanted when suffering from pain and anxiety/fear. The patients revealed that the most important thing for them to feel cared for in these situations was to be listened to, taken seriously and trusted, if they were not treated in this way the patients revealed that they felt they were in the hands of somebody who was uncaring. The findings are interpreted within the framework of Paul Tillich's philosophy concerning love, power, justice and courage, thereby showing the tension between these phenomena in the narrated, lived, moral experience. Light is also thrown on the dynamics of openness, vulnerability, fallibility, forgiveness, affirmation as well as powerlessness, meaninglessness, insufficiency, dissociation and exclusion. Reflections are made concerning practical wisdom. / <p>S. 1-60: sammanfattning, s. 61-151: 6 uppsatser</p> / digitalisering@umu

South Africa has adopted the international trend towards inclusive education. The result is an increasing number of learners with barriers to learning accommodated in mainstream schools. Alternative assessment programmes make provision to address the barriers to learning of these learners during formal assessments. Alternative assessment programmes are a good start to afford learners with barriers to learning a fair chance to impart their knowledge. However, the programmes are adult driven and, as the users of these programmes, we need to consider the learners’ views also. Knowledge of their experience will increase understanding of their needs, which in turn will help to refine the programmes and adjust the programmes to these needs. General aim of the study: to explore the lived experience of learners with barriers to learning, who participated in an alternative assessment programme in a mainstream high school in the Western Cape, in a qualitative way, through a phenomenological design. The phenomenological design provided a deeper understanding of the learners’ experience of the alternative assessment programme from the learners’ viewpoint. We held unstructured, individual interviews with the eight participants who consented to participate in the study. As requested, the participants made collages of their experiences of the alternative assessment programme in a group setting, prior to the interviews. Section B presents the findings of this qualitative study and relates the learners’ experience of the alternative assessment programme during test- and formal examination series. The findings highlight the importance of considering the opinions of learners with barriers, participating in an alternative assessment programme. / MSc (Master of Social Work), North-West University, Potchefstroom Campus, 2015

South Africa has adopted the international trend towards inclusive education. The result is an increasing number of learners with barriers to learning accommodated in mainstream schools. Alternative assessment programmes make provision to address the barriers to learning of these learners during formal assessments. Alternative assessment programmes are a good start to afford learners with barriers to learning a fair chance to impart their knowledge. However, the programmes are adult driven and, as the users of these programmes, we need to consider the learners’ views also. Knowledge of their experience will increase understanding of their needs, which in turn will help to refine the programmes and adjust the programmes to these needs. General aim of the study: to explore the lived experience of learners with barriers to learning, who participated in an alternative assessment programme in a mainstream high school in the Western Cape, in a qualitative way, through a phenomenological design. The phenomenological design provided a deeper understanding of the learners’ experience of the alternative assessment programme from the learners’ viewpoint. We held unstructured, individual interviews with the eight participants who consented to participate in the study. As requested, the participants made collages of their experiences of the alternative assessment programme in a group setting, prior to the interviews. Section B presents the findings of this qualitative study and relates the learners’ experience of the alternative assessment programme during test- and formal examination series. The findings highlight the importance of considering the opinions of learners with barriers, participating in an alternative assessment programme. / MSc (Master of Social Work), North-West University, Potchefstroom Campus, 2015

Aim: The overall aim was to create knowledge about what it means to live with bipolar disorder from an existential perspective, both for individuals with the diagnosis and for their close relatives.Method: An existential perspective in this context entails that it is explored and described from a lifeworld perspective of individuals who in various ways experience that which is termed as bipolar disorder. The lifeworld phenomenological approach Reflective Lifeworld Research (RLR) was used in the four empirical studies. Meaning-oriented interviews and analysis were conducted following the leading methodological principles of the chosen scientific approach. A synthesis, based on lifeworld hermeneutic existential philosophy, then presents how it is possible to understand the perspective of individuals with bipolar disorder and their close relatives as a coherent whole.Findings and conclusions: A magnitude and complexity of experiencing, which means that life with bipolar disorder is characterized by extra dimensions, specific tension and contradictions, has been elucidated. Knowledge of the meaning of these aspects enables for the persons with the illness and for their close relatives to understand, to put words to, and to communicate how their life is and what they need, which in turn enhances their ability to influence their lives. It also increases the opportunities for professional caregivers to develop care, both in content and organization, so that it can meet the actual needs of those concerned in an adequate way.Living with bipolar disorder means so much more than the usual description with changes between episodes of depression and mania. The diagnosis “bipolar disorder” thus appears to be an inadequate label that only reflects the more obvious and visible dimensions of the illness, while those that characterize life in its entirety remain hidden.The thesis also shows that the importance of the common everyday life of persons with bipolar disorder and their close relatives should be highlighted as the most important factor in a liveable existence. A change in the view of mental health care is thus needed; a change that is characterized by consensus, collaboration and transparent communication between the person with the illness, their close relatives and mental health care. The common goal should be about meeting actual needs, and to strengthen a profound connectedness in order to make everyday life more liveable. / Disputationen sker den 2012-11-16, Sal Myrdal, Hus K, Växjö, kl. 10:30.

The idea for this paper resulted out of a curiosity for minimalist lifestyle concepts, namely capsule closets and the missing research about this topic as well as the importance of this concept for the society, the environment and the future of the fashion and textile industry. The study describes a phenomenological study in which the researcher explored participants’ lived experiences with capsule closets in order to provide a better understanding of the capsule closet experience. Fixed-interval diaries and semi-structured in-depth interviews with five women were conducted. Using descriptive phenomenological analysis, the researcher identified seven essential themes representing the lived experiences found in participants’ experience with capsule closets: 1) Feeling excited, enthusiastic and determined; 2) Feeling relived and satisfied; 3) Experiencing struggles and challenges; 4) Feelings of guilt and regret; 5) Feeling limited, bored and less creative; 6) Feelings of accomplishment and proudness; 7) Learning experience. These findings both support and contribute to existing literature related to this topic and provide new insights and add new aspects to the knowledge of the capsule closet experience.