This thesis examines policy and service delivery issues in the development of health and support for families at risk. The research focuses on families with children less than 7 years of age living in some of the most disadvantaged neighbourhoods of metropolitan Adelaide. The thesis draws on evidence of (a) barriers to service support perceived by these families and (b) their strengths and resources in order to identify and develop arguments related to key issues of policy and service delivery.

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Introduction: Musculoskeletal disorders constitute the greatest cause of sickness absence from work. Despite research and efforts at rehabilitation, sickness absence due to these disorders has not decreased, but has instead increased, particularly in women. Clients’ perceptions of care and rehabilitation, i.e. knowledge generated from a lay perspective, is a neglected area of research. This thesis deals with lay experiences of rehabilitation following sickness absence due to back, neck or shoulder problems, termed musculoskeletal disorders (MSD). Aim: The overall aim was to examine hindering and promoting processes in rehabilitation after sickness absence due to MSD from a lay perspective. Specific aims were to study how lay persons experience rehabilitation agents and rehabilitation activities (paper I), how they describe themselves and their experience in relation to work (paper II), the significance of the private arena regarding return to work (paper III), and how clients who have experienced sickness absence due to MSD perceive contact with rehabilitation agents (paper IV). Method: The study population in the four papers is part of a cohort of persons living in the same municipality and who in 1985 were aged 25-34 years and were sick-listed due to back, neck or shoulder diagnoses for 28 days or  more, n=213. During 1995, 148 persons in the cohort responded to a questionnaire, and in 1997-1998, 20 of these persons were interviewed concerning their experiences with rehabilitation. In papers I, II and III the qualitative method of Grounded Theory was used with a focus on creating an empirically-based theory concerning the area under study. Data collection was strategic and analysis of the tape-recorded interviews was done on a continual basis. How previously sick-listed persons experienced contact with professional rehabilitation agents in t he health care sector and social insurance office was investigated in paper IV. Factor analysis and multiple regression analysis were used to analyse the data in this study. Results: The interview study shed light on lay persons’ experiences with medical, social and work-related measures in rehabilitation, their perceptions of rehabilitation actors and family members in relation to rehabilitation, and their self-presentations. The descriptions of lay persons concerned three arenas, the health care arena, the occupational arena, and the private arena. Dilemmas and difficulties in these arenas were described, such as handling the duty to work, experiencing domestic strain, and the experience of lacking socioemotional support from significant persons during the rehabilitation process. In paper I some ideal types of rehabilitation agents emerged from the interviewees’ descriptions concerning the health care arena, and we called these the routine bureaucrat, the empathic administrator, the distant technician, and the professional mentor. The latter agent was requested and was described as a person who could provide socioemotional support, who had professional competence, and who could function as a unifying link during the rehabilitation process. The results from paper II showed that in their self-presentations, the interviewees expressed having a duty to work and that there were differences in how they handled this sense of duty. The selfpresentations contained descriptions of work as a part of personal identity and could be summarised in the following ideal types: the work manic, the workhorse, the workaholic and the relaxed worker. The latter used a strategy that can be considered to promote rehabilitation in that the individual himself/herself had control over his/her work and worked in accordance with his/her own needs rather than those of others. Paper III focused on the private arena. Different patterns were found in the experiences of men and women. Women related that their responsibility for the home and domestic work seldom left any time for themselves, including any time for rehabilitation. Men more often reported having time for themselves that could be used for leisure activities and rehabilitation. Some of the women said that they lacked socioemotional support from their partner and that they had a great deal of responsibility for housework, which seemed to be a hindrance in returning to work after sickness absence. Furthermore, these women, like most of the men, had little education, which could make finding other work alternatives more difficult. Based on the interviews, a hypothesis was developed regarding domestic strain that is related to the distribution of domestic work, the distribution of responsibility for the home, and the quality of the marital relationship. Paper IV dealt with clients’ perceptions of contact with rehabilitation agents in health care and the social insurance office. Three latent dimensions were found in the respondents’ ratings of these contacts: supportive treatment, distant treatment, and empowering treatment. Sex, disability pension status, mental health and diagnostic group were significantly related to how these dimensionswere rated. Women perceived the treatment from both types of rehabilitation agents as more supportive than men. Contact with the social insurance offices were rated higher by persons with disability pensions than by those who had returned to work. Men rated their contact with rehabilitation agents at social insurance offices high on the dimension of distant treatment. Respondents with mental health problems rated the contact as distant for both types of rehabilitation agents, but contact with health care was also scored low on the supportive dimension. Finally, respondents with neck/shoulder diagnoses rated contact with rehabilitation agents in health care as more empowering than was done by persons with back diagnoses. Conclusions: From a lay perspective rehabilitation following sickness absence due to MSD occured in three arenas, the health care arena, the occupational arena and the private arena, where the quality of relationships both with rehabilitation agents, persons at work and in one’s private life was described as important regarding the rehabilitation process. This thesis also showed that both sex and health were important factors regarding how lay persons’ perceived contacts with rehabilitation agents during the rehabilitation process following sickness absence due to MSD.

Submitted by Gentil Jeorgina (jeorgina@icict.fiocruz.br) on 2013-10-09T16:15:12Z No. of bitstreams: 1 Valéria Hartt.pdf: 1919843 bytes, checksum: 68a6cd38069d53b02f4eb969f570af19 (MD5) / Made available in DSpace on 2013-10-09T16:15:12Z (GMT). No. of bitstreams: 1 Valéria Hartt.pdf: 1919843 bytes, checksum: 68a6cd38069d53b02f4eb969f570af19 (MD5) Previous issue date: 2013 / Fundação Oswaldo Cruz. Instituto de Comunicação e Informação Científica e Tecnológica em Saúde. Rio de Janeiro, RJ, Brasil / Nesse recorte de pesquisa, o conceito de conhecimento leigo é ponto de partida e fio condutor para compreender as práticas de participação e ativismo de uma organização de pacientes de câncer, aqui na experiência da International Myeloma Foundation no Brasil (IMF). É a perspectiva informacional que ancora a meta de identificar os contornos do conhecimento leigo da representação brasileira da IMF para dar relevo aos sentidos de equidade em saúde na atenção oncológica. Os resultados apontam para uma forma de mobilização cidadã capaz de abrigar a produção social do conhecimento científico, mas mostram que a prática de advocacia em saúde ainda precisa avançar no Brasil como reflexo dessa nova forma de construção do conhecimento. / In this research outline, the concept of lay knowledge is a starting point and guideline for understanding the practices of participation and activism of a cancer patients organization, here through the experience of the International Myeloma Foundation (IMF) in Brazil. It is the informational perspective that anchors the goal of identifying the contours of lay knowledge of Brazilian representation of the IMF to emphasize the senses of equity in health in cancer care. The results point to a form of citizen mobilization able to shelter the social production of scientific knowledge, but show that the practice of health advocacy still needs to advance in Brazil as a result of this new form of knowledge construction.

Cette thèse propose d’interroger les conditions locales d’insertion d’un modèle de gestion autonome de la maladie chronique dans le contexte d’émergence du diabète comme problème de santé publique au Burkina Faso. La réflexion prend appui sur un corpus ethnographique qui croise des récits d’expérience de la maladie, l’observation d’activités médicales et de pratiques de soins, ainsi que l’expérience singulière de l’anthropologue impliqué dans la quête thérapeutique de son logeur. Une approche socio-ethnologique d’un village bwa permet de caractériser un espace social alimentaire local et d’identifier les dimensions culturelles et sociales de la santé et de la maladie. Des éclairages historiques et politiques sont convoqués pour penser le rapport des patients au système de soins local. Les savoirs ordinaires sur le diabète sont interrogés dans leurs modalités de construction et leurs finalités pratiques. Les itinéraires thérapeutiques des patients révèlent la perception de risques sociaux liés à une individualisation des comportements alimentaires. Une logique de la “débrouillardise“ permet de “contenir“ le diabète dans un contexte d’incertitudes que majore le coût rédhibitoire des traitements. Les limites actuelles d’une médicalisation du diabète sont analysées en regard de la qualité de vie des patients. Cette approche du contexte laisse penser que l’application locale du projet global d’autonomisation des patients fait émerger de nouveaux enjeux au cœur même de la relation de soins. La thèse ouvre sur une réflexion concernant l’articulation des pratiques locales, du modèle global, et du paradigme du care dans la perspective d’une amélioration du quotidien des patients. / This PhD dissertation proposes to examine local conditions of the insertion of a model of self-management of chronic disease in the context of the emergence of diabetes as a public health problem in Burkina Faso. The reflection is based on an ethnographic corpus that includes stories of illness experience, observation of medical activities and care practices, as well as the singular experience of the anthropologist involved in a therapeutic quest for his host. A socio-anthropological approach of a bwa village (Dédougou area) characterizes the local food social space and identifies the cultural and social dimensions of health and disease. Historical and political insights are invited to think about the relationship between patients and the local health system. The modalities of construction and practical purposes of lay knowledge about diabetes are questioned. Therapeutic itineraries of patients reveal the perception of social risks related to individualized eating behaviors. A logic of "resourcefulness" can "manage" diabetes in a context of uncertainty that increases the prohibitive cost of treatment. The current limits of medicalization of diabetes are analyzed with respect to patients’ quality of life. This contextualisation suggests that the local application of the global project to empower patients produces the emergence of new issues at the heart of care relationship. The thesis opens a reflection on the articulation between local practices, global model, and the paradigm of care, understood in the perspective of improving patients’ lives.