The general aim of this dissertation is to describe and analyse how public old-age care in Sweden has developed and changed during the last century. The study applies a provider perspective on how care has been planned and professionally carried out. A broader social policy perspective, studying old-age care at central/national as well as local/municipal level, is also developed. A special focus is directed at the large local variation in care and services for the elderly. The empirical base is comprised of official documents and other public sources, survey data from interviews with elderly recipients of public old-age care, and official statistics on publicly financed and controlled old-age care and services. Study I addresses the development of old-age care in Sweden during the twentieth century by studying an important occupation in this field – the supervisors and their professional roles, tasks and working conditions. Throughout, the roles of supervisors have followed the prevailing official policy on the proper way to provide care for elderly people in Sweden; from poor relief at the beginning of the 1900s, via a generous level of services in the 1960s and 1970s, to today’s restricted and economy-controlled mode of operation. Study II describes and compares two main forms of public old-age care in Sweden today, home help services and institutional care. The care-load found in home-based care was comparable to and sometimes even larger than in service-homes and other institutions, indicating that large care needs among elderly people in Sweden today can be met in their homes as well as in institutional settings. Studies III and IV analyse the local variation in public old-age care in Sweden. During the last decades there has been an overall decline in home help services. The coverage of home help for elderly people shows large differences between municipalities throughout this period, and the relative variation has increased. The local disparity seems to depend more on historical factors, e.g., previous coverage rates, than on the present municipal situation in levels of need or local economy and politics. In an introductory part the four papers are linked together by an outline of the demographic situation and the social policy model for old-age care in Sweden. Trends that have been apparent over time, e.g. professionalisation and market orientation, are traced and discussed. Conflicts between prevailing ideologies are analysed, in regards to for instance home-based and institution-based care, social and medical culture, and local and central levels of decision-making. ’Welfare municipality’, ‘path dependency’, and ‘decentralisation’ are suggested as a conceptual framework for describing the large and increasing local variations in old-age care. Finally, implications of the four studies with regard to old-age care policy and further research are discussed. / <p>Härtill 4 uppsatser</p>

MPH / Department of Public Health / See the attached abstract below

Stigma is broadly considered as an important obstacle in HIV prevention and treatment. In Mozambique, more PLWHIV have access to treatment than ever. ART increased their QoL and created a new context for stigma production. This cross-sectional study conducted in Northern Mozambique explored a possible association between stigma and QoL. The Berger Stigma Scale and WHOQOL-BREF were used to measure levels of HIV-related stigma and perceived QoL in two groups of PLWHIV receiving ARV, with participation in a HBC programme as the independent variable. The study uncovered a weak to moderate negative correlation between stigma and QoL scores. Statistically significant differences were discovered between the groups’ scores on the Berger Stigma Scale and a higher perceived QoL for PLWHIV in the HBC group on three WHOQOL-BREF subscales and on the overall score. The scores on the social relationships subscale indicated lower perceived QoL for PLWHIV in the HBC group. / Sociology / M.A. (Social Behaviour Studies in HIV/AIDS)

The purpose of this study was to determine how pain in PLHIV on community home based care programme was managed using the Roy adaptation model (RAM) as the theoretical framework. This study used a descriptive mixed method research design which allowed for the research topic to be investigated and described in terms of both narrative qualitative accounts and descriptive statistics. A sequential exploratory approach was adopted in which qualitative data collection was conducted in the initial phase followed by quantitative data collection. Ten qualitative interviews, guided by the components of the RAM were conducted in the initial phase and a structured interview schedule (questionnaire) partially based on the result of the qualitative phase and (which was also structured in accordance with the RAM) was administered to 120 respondents who met the inclusion criteria of being on CHBC. Convenience sampling was used to select study participants and respondents in both phases of the study. Peripheral neuropathy was the most common pain syndrome experienced by patients. More females suffered numbness/tingling sensation of toes, followed by chest pains than their male counterparts. Pain experienced was moderate to severe which was not treated effectively. The study findings could assist health care providers, policy makers and researchers to invest into improving pain management for PLHIV, strengthen education of patients and their primary caregivers on the causes of pain and modalities to employ for pain relief and implement palliative care guidelines for PLHIV. / Health Studies / D. Litt. et Phil. (Health Studies)

According to the Ministry of Health (1996:26), the most common chronic/terminal illnesses were cardiovascular disorders, diabetes, cancer, mental disorders, HIV/AIDS, tuberculosis and asthma. Long term treatment and care and the growing incidence of these conditions necessitated the introduction of home-based care (HBC). Consequently, family care givers play a major role in the provision of care to chronically/terminally ill patients and professional health care providers adopt a supervisory role. This study examined the quality of home care services provided in Botswana. The availability and accessibility of home-based care services and resources have a direct bearing on the quality of home-based care delivery system. The researcher used systems theory was used as the conceptual framework for this study. The study aimed to • determine the accessibility and availability of home-based care services in Molepolole East • investigate what the perspectives and experiences of family care givers, patients and professional health care providers of Botswana home-based care are • determine the roles of professionals health care providers, patients, and family care givers and their relationships in the context of home- based care • identify the needs of chronically/terminally ill patents and family care givers • determine the type of support given to family care givers and patients by professional health care providers and make recommendations for the improvement of home-based care • develop a model to prepare family care givers The research design combined quantitative and qualitative research methods. A sample of convenience was used to obtain information from patients' family care givers and professional health care providers. Interviews and questionnaires were used. A proposed care giving preparedness model is presented to meet needs of the family care givers. The study found that family care givers needs are neither known nor catered for by the professional health care provider. The family care givers were not adequately prepared before adopting the care-giving role. It is recommended that • The proposed preparedness care giving training model is considered for training of patients and family care givers before discharge and during HBC. • Increase patients and family care givers decision-making / Health Studies / D.Litt. et Phil. (Health Studies)

The purpose of this study was to determine how pain in PLHIV on community home based care programme was managed using the Roy adaptation model (RAM) as the theoretical framework. This study used a descriptive mixed method research design which allowed for the research topic to be investigated and described in terms of both narrative qualitative accounts and descriptive statistics. A sequential exploratory approach was adopted in which qualitative data collection was conducted in the initial phase followed by quantitative data collection. Ten qualitative interviews, guided by the components of the RAM were conducted in the initial phase and a structured interview schedule (questionnaire) partially based on the result of the qualitative phase and (which was also structured in accordance with the RAM) was administered to 120 respondents who met the inclusion criteria of being on CHBC. Convenience sampling was used to select study participants and respondents in both phases of the study. Peripheral neuropathy was the most common pain syndrome experienced by patients. More females suffered numbness/tingling sensation of toes, followed by chest pains than their male counterparts. Pain experienced was moderate to severe which was not treated effectively. The study findings could assist health care providers, policy makers and researchers to invest into improving pain management for PLHIV, strengthen education of patients and their primary caregivers on the causes of pain and modalities to employ for pain relief and implement palliative care guidelines for PLHIV. / Health Studies / D. Litt. et Phil. (Health Studies)

Stigma is broadly considered as an important obstacle in HIV prevention and treatment. In Mozambique, more PLWHIV have access to treatment than ever. ART increased their QoL and created a new context for stigma production. This cross-sectional study conducted in Northern Mozambique explored a possible association between stigma and QoL. The Berger Stigma Scale and WHOQOL-BREF were used to measure levels of HIV-related stigma and perceived QoL in two groups of PLWHIV receiving ARV, with participation in a HBC programme as the independent variable. The study uncovered a weak to moderate negative correlation between stigma and QoL scores. Statistically significant differences were discovered between the groups’ scores on the Berger Stigma Scale and a higher perceived QoL for PLWHIV in the HBC group on three WHOQOL-BREF subscales and on the overall score. The scores on the social relationships subscale indicated lower perceived QoL for PLWHIV in the HBC group. / Sociology / M.A. (Social Behaviour Studies in HIV/AIDS)

MPM / Oliver Tambo Institute of Governance and Policy Studies / See the attached abstract below

According to the Ministry of Health (1996:26), the most common chronic/terminal illnesses were cardiovascular disorders, diabetes, cancer, mental disorders, HIV/AIDS, tuberculosis and asthma. Long term treatment and care and the growing incidence of these conditions necessitated the introduction of home-based care (HBC). Consequently, family care givers play a major role in the provision of care to chronically/terminally ill patients and professional health care providers adopt a supervisory role. This study examined the quality of home care services provided in Botswana. The availability and accessibility of home-based care services and resources have a direct bearing on the quality of home-based care delivery system. The researcher used systems theory was used as the conceptual framework for this study. The study aimed to • determine the accessibility and availability of home-based care services in Molepolole East • investigate what the perspectives and experiences of family care givers, patients and professional health care providers of Botswana home-based care are • determine the roles of professionals health care providers, patients, and family care givers and their relationships in the context of home- based care • identify the needs of chronically/terminally ill patents and family care givers • determine the type of support given to family care givers and patients by professional health care providers and make recommendations for the improvement of home-based care • develop a model to prepare family care givers The research design combined quantitative and qualitative research methods. A sample of convenience was used to obtain information from patients' family care givers and professional health care providers. Interviews and questionnaires were used. A proposed care giving preparedness model is presented to meet needs of the family care givers. The study found that family care givers needs are neither known nor catered for by the professional health care provider. The family care givers were not adequately prepared before adopting the care-giving role. It is recommended that • The proposed preparedness care giving training model is considered for training of patients and family care givers before discharge and during HBC. • Increase patients and family care givers decision-making / Health Studies / D.Litt. et Phil. (Health Studies)

La pratique infirmière en soins palliatifs en fin de vie à domicile fait l’objet de critiques lorsqu’elle est circonscrite à des paramètres biomédicaux, comme la gestion des douleurs et des symptômes de fin de vie. Cet accent maintiendrait parfois la pratique infirmière en porte-à-faux avec les volontés réelles des personnes soignées, ce qui limiterait leur possibilité de vivre pleinement leur vie dans la période du mourir. Partant de l’idée que la discipline et la pratique infirmière visent la santé des personnes, quelle que soit la période de leur vie, le but de cette thèse est de concevoir des mécanismes actionnables pour une pratique infirmière pour la santé en soins palliatifs en fin de vie à domicile, afin que les personnes soignées vivent la vie qu’elles valorisent dans la période du mourir. Une démarche itérative comportant un volet théorique et un volet empirique est présentée, en cohérence avec les principes de l’épistémologie du constructivisme projectif et une conception systémique de la pratique infirmière. Le volet théorique de la thèse prend appui sur l’approche par les capabilités d’Amartya Sen. Les capabilités des individus représentent l’ensemble des libertés qu’ils possèdent réellement pour vivre la vie qu’ils ont raison de valoriser. À partir d’idées de Sen, nous proposons une modélisation de l’agir complexe de la pratique infirmière comme processus de conversion de ressources vers des capabilités pour la santé. Le volet empirique de la thèse est fondé sur cette proposition théorique. La question de recherche suivante est posée : Comment la pratique infirmière pour la santé en soins palliatifs en fin de vie à domicile peut être conçue comme un processus de conversion vers des capabilités pour la santé? La recherche empirique suit les paramètres d’un devis qualitatif descriptif interprétatif combinant une approche narrative et une méthode d’analyse par questionnement analytique. Une première partie des résultats empiriques présente trois récits coconstruits auprès d’infirmières œuvrant en soins palliatifs en fin de vie à domicile et un quatrième récit assemble les réflexions de l’étudiant-chercheur issues de sa pratique clinique et de recherche. La deuxième partie des résultats empiriques présente quatre mécanismes de la pratique infirmière pouvant participer à la création de capabilités pour que les personnes soignées vivent la vie qu’elles valorisent dans la période du mourir : 1) naviguer entre la vie valorisée par l’Autre et des normes, 2) concevoir l’Autre à la fois capable et vulnérable; 3) engager la réflexivité sur soi, et 4) agir par la présence créative. Ces résultats suggèrent une conception de la pratique infirmière en soins palliatifs en fin de vie à domicile comprise sous l’angle d’une praxis qui appelle à la réflexivité, la réciprocité et la créativité des infirmières pour s’engager dans la relation au mourant. Pour la discipline infirmière, l’approche par les capabilités permet de comprendre comment la pratique infirmière peut s’engager concrètement vers la vie valorisée par les personnes soignées, jusqu’à leur mort. / Home-based palliative care nursing has been critiqued for its focus on biomedical parameters, such as pain or end-of-life symptom management, which tend to maintain nursing practice at odds with patient aspirations, thus limiting their ability to live life to the fullest until death. Based on the premise that the aim of nursing discipline and practice is health throughout all stages of life, the purpose of this thesis is to theorize actionable mechanisms of health-oriented nursing practice in home-based palliative care so that dying people can live the life they value until death. An iterative methodology combining theoretical and empirical work was conducted, in coherence with a pragmatic constructivist epistemology and a systemic model of nursing practice. The theoretical component of this thesis is based on Amartya Sen's capability approach. Capabilities are defined by Sen as the set of effective freedoms people possess to live the life they have reason to value. Based on Sen's ideas, we propose that nursing practice can be conceptualized as the conversion process of resources into health capabilities. The empirical component of this thesis proceeds from the above proposition with the following research question: How can health-oriented nursing practice in home-based palliative care be conceptualized as a conversion process towards health capabilities? A descriptive-interpretive qualitative design, combining narrative inquiry and analytical questioning produced two sets of empirical results. The first presents three stories co-constructed with nurses practicing home-based palliative care; whilst a fourth story recounts the author’s emerging reflections in relation to his own clinical and research practice. The second set of empirical findings presents four nursing practice mechanisms that tend to create capabilities of dying people as they live the life they value until death: 1) navigating between a life valued and norms, 2) seeing a dying person as both capable and vulnerable; 3) reflexively engaging with one’s practice, and 4) being creatively present. These findings suggest that home-based palliative care nursing can be understood as a praxis that engages reflexivity, reciprocity, and creativity in relation to the dying person. For the discipline of nursing, a capability lens reveals how nursing practice can engage with the lives valued by dying people, until their death.