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Endometrios är en kronisk sjukdom som drabbar en av tio kvinnor världen över. Vanliga symptom är menstruationssmärta, samlagssmärta och en nedsatt fertilitet. Diagnosen endometrios ställs oftast i samband med en titthålsoperation och kan i många fall dröja upp till flera år. Tidigare forskning på området har funnit att individer som lever med endometrios kan uppleva en minskad livskvalité, komplikationer med sociala relationer samt emotionella besvär. Syftet med föreliggande studie var att studera kvinnors upplevelse av endometrios. Åtta kvinnor intervjuades, samtliga bosatta i Stockholmsområdet. Resultatet visar på flera olika psykologiska aspekter som sjukdomen för med sig. En minskad livskvalité, komplikationer med sociala relationer och en nedsatt arbetsförmåga är aspekter som påverkas av de upplevda symptomen. En nedsatt fertilitet kan vidare skapa en reducering av individens självkänsla. Slutsatsen är att en tidigare diagnos och ökad forskning skulle kunna bidra till underlättande av endometriosdrabbades vardag och därmed förbättra deras livskvalité.

Aims: Unmet needs have mainly been investigated with formal and informal adult caregivers and ill individuals within psycho-oncology; findings indicate unmet needs are associated with negative affective state and caregiver burden. Research relating to adolescent children’s experiences of unmet needs during parental illness has, in the main, been based upon parental reports or professional opinion, yet research suggests that parental reports can downplay the effects and it is important to ask the adolescent child for their opinion. Adolescence is a transitional time in development; this may make the illness experience and subsequent needs vary from those of formal and informal adult caregivers. This thesis pragmatically investigates adolescent children’s firsthand accounts of unmet psychosocial and supportive care needs when they have a parent with a non-communicable disease. Methods: Systematic Review: To inform the direction of the thesis and capture all relevant published literature, a comparative systematic review was carried on adolescent’s experiences of unmet needs when they have a parent with a NCD, cancer or psychological problem. The review was conducted using standardized procedures and guidance from the Cochrane collaboration. Interpretative Phenomenological Analysis: Qualitative methodology was used to investigate seven adolescent’s experiences of unmet psychosocial and supportive care needs in relation to having a parent with a NCD. Participants were recruited through institutions of further and higher education. Quantitative Research: Pearson’s correlation and multiple regressions were used to test associations between unmet needs, depression, stress, anxiety and quality of life, and to determine the applicability of the revised version of the Offspring Cancer Needs Inventory (OCNI) for individuals who have a parent with a NCD. One hundred and seven adolescent children completed the revised version of the OCNI, the DASS-21 (depression, anxiety, and stress) and AC-QoL (Adult carers’ quality of life) scales. Findings: Systematic Review: In the review 1479 papers were considered. Seven met the inclusion criteria, of these five papers related to cancer, one to chronic illness and one to psychological problems. Results suggest that adolescents had informational, supportive and recreational needs, and did not want to worry parents by asking them questions. The lack of hits and the disparity between illness groups is problematic in making comparisons and drawing definitive conclusions. Interpretative Phenomenological Analysis: Four interdependent themes emerged from the data, two relating to interpersonal needs (Information Needs and Support Needs), and two relating to intrapersonal needs (Need for 4 Acknowledgement and Need to be Them-Self), each had their own number of sub-themes. Adolescent’s had a variety of needs that could be partially met through honest and accurate information, interpersonal support and acknowledgment of their caring role within the family. The interdependence of the needs indicated that the fulfilment of one need has the potential of meeting other needs. Unmet needs were comparable to those of adolescent children who have a parent with cancer; as such it was deemed that the new version of the OCNI would be suitable for use with individuals who had a parent with a NCD. Quantitative Research: Ninety-Three percent of adolescents reported at least one unmet need. Analysis suggests that the unmet needs variables were co-dependent and correlated with depression, stress, anxiety, and quality of life. Certain unmet need variables predicted stress, anxiety, depression, and quality of life. Conclusion: The findings of this thesis indicate that adolescent children who have a parent with a NCD have a variety of unmet needs, and that these are associated with affective state and well-being. It is suggested that counselling psychologists are well placed to provide psychological and needs based interventions based upon the findings within this thesis. More research is required in this area to determine cause and effect; owing to counselling psychologists working with the lifespan they would be well placed to further the knowledge in this area.

Chronic illness affects nearly half of all American adults, yet this experience is often regarded as socially normative for older adults. In this study, I examined chronic illness onset early in the life course and its effects on mastery, a person’s self-perception as capable of coping with and managing life’s circumstances, and depressive symptoms as informed by the life course perspective and the stress process model. Using multilevel modeling of American Changing Lives Survey (ACLS) data, I examined the following questions: What is the relationship between early onset chronic illness and mastery? Second, what is the relationship between early onset chronic illness and depressive symptoms? Does mastery mediate the relationship between early onset chronic illness and depressive symptoms? Is early onset chronic illness (24-35) more strongly associated with decreased mastery and increased depressive symptoms than illness onset at the more socially normative life stages of mid-life (36-64) and late-life (65 years and older)? Lastly, does mastery mediate or moderate the relationship between timing of illness onset and depressive symptoms? Through this study, I aim to contribute to sociological knowledge of whether and how chronic illness impacts mastery and depression among young adults. I argue that ill-timed chronic illness impacts young adults’ sense of control over their lives, which has enduring psychological and social consequences. Findings support that healthy and chronically ill young adults do not significantly differ on mastery, but ill young adults report significantly higher depressive symptoms than healthy same age peers. Mastery moderates the effects of timing of illness onset on depressive symptoms with older adults reaping greater benefit from mastery against depressive symptoms than young adults with early onset illness. These findings suggest that early onset chronic illness positions people at greater risk for poor mental health outcomes and that the chronic illness experience and its effects are not uniform across the life course. Consequently, work in this area must consider age as an important context in which the life event of chronic illness onset occurs.

Aim: The overall aim was to generate deepened knowledge and understanding about families’ experiences of living as a family with chronic illness. The four studies aimed to: illuminate the meaning of living as a family in the midst of chronic illness (I), illuminate illness beliefs in those families (II), illuminate the meaning of place for family well-being (III) and describe the experiences of encounters with health care in families living with chronic illness (IV). Methods: All studies had qualitative designs and a Family Systems Nursing perspective. Data was collected through family interviews with families where an adult family member had lived with chronic illness for more than two years. The used analyses were phenomenological hermeneutic (I,III), hermeneutic (II) and content analysis (IV). Results: Living as a family with chronic illness was a continuously ongoing process where families co-created a context for living with illness and alternative ways for everyday life (I). Core and secondary beliefs within and across families about illness, family, and health care were revealed and showed for how families responded to and managed situations due to illness (II). Further, the meaning of place for family well-being was described as “a shared respite”, i.e. a place for relief, reflection and re-creation. It seemed to be important for families to be in secure places to enhance well-being (III). Living with chronic illness also includes frequent encounters with health care professionals and having an accompanying member constituted a great power. It helped families to get opportunities to collaborate, and receiving confirmation in the encounters (IV). Conclusions: Living as a family with chronic illness is a continuously ongoing process where family members constitute support for each other. Families have a common desire to handle challenges and changes due to illness and to co-create new patterns for everyday living. Therefore, if nurses adopt a Family Nursing Perspective and involve families in health care, families’ strengths and resources can be facilitated. Then, family well-being can be strengthened.

Chronic obstructive pulmonary disease (COPD) has a severe impact on quality of life (QOL). Using the Health Promotion Model as a guide, a cross-sectional, correlational design was used to describe relationships among individual characteristics and experiences (age, gender, race, severity of illness, resilience), behavior-specific cognitions and affect (self-efficacy, barriers, social support), behavioral outcomes (health promoting lifestyle), and QOL in this patient population. One hundred and twenty participants were recruited from three clinics at Virginia Commonwealth University Health System. In addition to a demographic survey, participants completed a 151-item questionnaire incorporating measures resilience, severity of illness, self-efficacy, and barriers to a health-promoting lifestyle, social support, lifestyle, and QOL. Spirometric evaluation of lung function and the 6-minute walking test were also completed. Structural equation modeling was used to determine the effect of nine independent variables on QOL.Participants were white (51.2%), female (63.6%), and approximately 60.5 years old. Severity of illness, characterized by symptoms and functional capacity, suggested they were not severely ill (mean = 3.18, S.D.= 2.69). They were somewhat resilient (mean = 136.01, S.D.= 23.01), had adequate social support (mean = 68.10, S.D.= 19.95), were uncertain about their competency (self-efficacy) to manage their health (mean = 24.91, S.D.= 4.92), sometimes experienced barriers (mean = 33.33, S.D.= 9.02), and sometimes included attributes of a healthy lifestyle in their lives (mean = 123.93, S.D.= 25.22). Their QOL was fair to poor (mean = 6.10, S.D.= 2.39).A series of analyses using structural equation modeling was conducted. The first model that was tested did not fit the data χ2(df = 13)= 67.989,p = 0.000, GFI = 0.895, CFI = 0.781, RMSEA = 0.189). Next, modification indices were use to reexamine for fit. Using the recommended modifications, a good fit model was obtained χ2(df = 9)=5.016, p = 0.833, GFI = 0.992, CFI = 1.0, RMSEA = 0.0); however, non-significant paths were present. An alternative model was tested and fit the data very well χ2(df=18)= 10.011, p = 0.932, GFI = 0.981, CFI = 1.0, RMSEA = 0.0). The independent variables explained about 45.1% of the variance in health-promoting lifestyle. All the variables explained 45.3% of variance in QOL. The most significant predictor of a healthy lifestyle was social support (0.383) and the most significant predictor of QOL was self-efficacy (0.364). The findings confirmed the utility of the HPM.

Organisation’s adaptation to owner’s chronic illness is an important theme for all businesses, but it is especially valuable for small family businesses as well as entrepreneurial couples due to their strong interrelation between family and business. So far family business research has not looked into family businesses’ process of adapting to the disruption caused by the occurence of owner’s severe chronic illness. The purpose of this thesis was to look at what impact an owner’s severe chronic illness has on the organisation’s adaptation. To fulfil the purpose, this study combines family science, and family business research and theories in an interdisciplinary manner, applying family science theory to family business research. Our approach is directed by the Double ABCX Model of Family Stress and the FAAR Model to explore the adaptation process of family businesses and to identify demands and resources connected to the disruption. This multiple case study, utilising semi-structured interviews, observations and secondary data was conducted in a Finnish and German context. The collected qualitative data is presented as narrative case summaries, and analysed by applying in- and cross-case analysis. The findings add to the theoretical understanding of the adaptation process by identifying preconditions, which affect organisations’ adaptation process. Moreover, we identified demands that a chronic illness causes for both the business and the family as well as resources that are used to respond to the new demands. A model illustrating the adaptation process and its dimensions is presented. The findings of the study do not only serve family businesses coping with a chronic illness but provide more implications for businesses in general. Organisations can use the study’s findings to prepare and make their business fit for disruptions of different nature. In addition, organisations in the particular situation researched can benefit by better understanding how they could further improve to stay resilient for possible future disruptions.

Atualmente os profissionais de saúde se confrontam com o cuidar de pacientes com talassemia maior que chegaram à fase adulta, devido ao avanço do conhecimento sobre a doença e dos efeitos das terapêuticas, principalmente da transfusão sangüínea e dos quelantes. A literatura médica destaca a problemática da irregularidade da adesão ao tratamento, pelo paciente, principalmente o da quelação, fundamental para a sua sobrevivência. No presente estudo, a análise dos sentidos dados pelos talassêmicos adultos à sua experiência com o regime terapêutico é o objetivo, desenvolvido pela antropologia médica e método qualitativo. Foi realizado com usuários do Hemocentro de Ribeirão Preto do Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto - USP. Para a coleta de dados foi empregado o relato oral, por entrevistas semi-estruturadas, obtendo-se narrativas sobre a experiência. Participaram do estudo onze adultos jovens, seis do sexo masculino, com idades entre 22 a 32 anos, com níveis educacionais e profissões distintas. As entrevistas foram transcritas e organizadas em textos individuais. Seguimos as etapas da análise temática indutiva para a análise dos dados. Os resultados são discutidos em dois núcleos temáticos: \"O início da doença e do tratamento\" e \"A vida do portador de talassemia com o tratamento\". No primeiro, são descritas as lembranças do início do tratamento. As narrativas demonstram que eles estão bem informados sobre a doença e tratamentos, e que tiveram contato com a morte de familiares com a talassemia. Subjetivamente eles destacam a sua identidade de diferença por terem o traço da doença. No segundo tema, descrevemos o longo itinerário terapêutico vivenciado; o reconhecimento da importância da adesão ao tratamento; as mudanças e adequações dos quelantes usados; a convivência com o estigma social pelas alterações corporais, reações da transfusão e do quelante; as dificuldades em manterem suas funções sociais; os episódios de irregularidade do seguimento terapêutico e suas justificativas. Pelos temas apreendemos que os adultos jovens com talassemia maior sob o regime terapêutico estão resignados com a sua condição, que a doença e tratamentos não os excluem da vida cotidiana, mas estão no centro das suas relações sociais. Para reduzirem o peso do sofrimento e do estigma, eles empregam a estratégia de normalização, elaborada no grupo social. Esta possibilita terem a sensação de ordem da vida, de controle da doença e do tratamento. Assim, as interrupções no tratamento ocorrem pela necessidade de normalização do corpo e da vida, mas que traz conseqüências graves para a sobrevivência. Ao final da discussão, fazemos uma reflexão sobre o conceito médico de adesão confrontado com o de concordância, e suas implicações para o contexto de cuidado com o talassêmico adulto. / Currently health professionals are faced with assisting patients with thalassemia major who reached adulthood, due to the advance of knowledge about the disease and the effects of therapies, especially the blood transfusion and chelation. The literature highlights the problem of irregular treatment adhesion by patients, especially the chelation, essential to their survival. In this study, the analysis of the sense given by thalassemic adults to their experience with the drug regimen is the goal, developed by medical anthropology and qualitative method. It was conducted with patients at the Blood Center of Ribeirão Preto, Hospital das Clínicas da Faculdade de Medicina de Ribeirao Preto - USP. To collect the data it was used oral report, by semi-structured interviews, obtaining narratives about the experience. Eleven young adults, six males, aged 22-32 years, with different educational levels and occupations attended the study. The interviews were transcribed and organized in individual texts. We followed the steps of inductive thematic analysis to analyze the data. The results are discussed in two themes: \"The onset of disease and treatment\" and \"The life of thalassemic patients with treatment.\" In the first one we describe the memories of the beginning of treatment. The narratives show that they are well informed about the disease and treatments, and had contact with the death of a family member with thalassemia. Subjectively they highlight the difference of their identity by having the disease trait. In the second theme, we describe the long-lived therapeutic itinerary; the recognition of the importance of adhering to the treatment; changes and adaptations of the chelating agents used; the social stigma of living with the body changes; adverse effects of transfusion and chelation; the difficulties in maintaining their social functions; episodes of irregularity in following therapeutic treatment and its justifications. Through the themes we could observe that young adults with thalassemia major under the therapeutic regimen are resigned to their condition, that the disease and treatment do not exclude them from everyday life, but are in the center of their social relations. To reduce the suffering and stigma, they employ the normalization strategy, elaborated in the social group. This enables them to have a sense of order in life, of disease and treatment control. Thus, disruptions in treatment occur by the need for normalization of body and life, but that brings severe consequences for survival. At the end of the discussion, we reflect on the medical concept of adhesion confronting with the agreement and its implications for the care context with the thalassemic adult.

Le présent travail a pour objet une description croisée de la maladie chronique en prenant l'exemple du diabète de type 2. Ce dernier est d'abord saisi par des approches médicales en lien avec l'épidémiologie, la santé publique, le politique et l'économique nommés ici « univers médicaux ». Ces univers médicaux sont l'apanage d'une idéologie néolibérale qui pense l'individu comme rationnel. Il est ensuite appréhendé par les « univers du malade » à partir de témoignages de personnes diabétiques, reflets de la « vraie vie » avec la maladie dans sa dimension sociale. Le diabète de type 2, emblème de la maladie chronique, est une maladie de civilisation, du mode vie, qui atteint les individus dans des dimensions multiples, notamment l'univers du quotidien, comme la sphère domestique ou l'alimentation. Vivre avec la maladie chronique est une épreuve ordinaire qui conjugue autocontrôle et réflexivité, et qui lie malades et soignants de façon répétée et prolongée, mettant en question les rôles de chacun tels que les a définis Parsons dans sa théorie fonctionnaliste. Pour les malades, ces interactions sont autant d'inscriptions dans le social ; elles montrent en quoi le travail de santé est une inscription sociale importante, particulièrement pendant la période de la retraite. Cette confrontation de deux univers permet de mieux comprendre la maladie chronique, décrite comme le visage contemporain de la maladie. Le malade chronique peut être vu comme une figure avancée de l'individu contemporain. Ce travail ouvre des perspectives pour penser une logique du soin, faisant écho aux théories du care. / The aim of this study is to describe chronic illness using the example of type 2 diabetes. Firstly, diabetes is comprehended by a medical approach in connection with epidemiology, public health, politics and economy, here referred to as « medical worlds ». These medical worlds belong to the neoliberal ideology which defines the individual as rational. Then, diabetes is perceived by testimonies given by diabetic people, reflecting « real life » with the illness in its social dimension, here referred to as « patient worlds ». Type 2 diabetes, emblem of a chronic condition, is a disease of civilization, of a way of life, which affects individuals in multiple dimensions of their every day life, such as the domestic sphere and food habits. Living with a chronic condition is a common hardship which associates auto control and reflexivity, and which puts in contact patients and medical actors in a repetitive and prolonged manner. This questions the roles of each as defined in Parsons's functionalist theory. For the patients, these interactions are part of the social world; they show how care working is an important concern, particularly during the retirement period. The confrontation of these two worlds help to understand chronic illness, described as the contemporary face of illness. The chronically ill individual allows to make the hypothesis that he is an advanced figure of the contemporary individual. This work outlines a care logic, which is close to care theories.

Este estudo teve como objetivo identificar as representações sociais de profissionais de saúde da área de diabetes mellitus sobre aspectos emocionais de pacientes adultos com diabetes mellitus. Trata-se de uma pesquisa descritiva, exploratória, de abordagem qualitativa, cujo referencial teórico adotado foi a teoria das representações sociais. Participaram do estudo 11 profissionais de saúde, de nível superior, sendo cinco enfermeiras, três psicólogos, uma médica, um educador físico e uma nutricionista, oriundos de instituições públicas e consultórios particulares. A coleta de dados ocorreu no período de março de 2012 a maio de 2012. Para tanto, utilizaram-se um formulário: contendo os dados sociodemográficos dos profissionais de saúde e um roteiro de entrevista semiestruturada, com a seguinte questão norteadora: Quais os significados que você, como profissional de saúde, atribui aos aspectos emocionais relacionados ao diabetes mellitus? Os dados foram submetidos à técnica de análise de conteúdo, utilizando-se o software ATLAS.ti - versão 6.2.27, que possibilitou identificar seis categorias: O paciente deve ser considerado em seus aspectos emocionais e comportamentais; Os aspectos emocionais do paciente suscitam uma atitude refratária ao tratamento; A contenção dos impulsos emocionais por parte do paciente favorece o controle da doença; O profissional não dá conta de lidar com os aspectos emocionais do paciente mobilizados pelo tratamento; O profissional reconhece a importância de compreender os aspectos emocionais do paciente em relação ao tratamento, vislumbrando potencialidades do paciente para incorporar as mudanças; Os aspectos emocionais do paciente, relacionados ao tratamento, têm altos e baixos, avanços e recuos. Os resultados mostraram que, nas representações que os profissionais elaboram sobre os aspectos emocionais, os pacientes com diabetes são representados como revoltados, rebeldes e relutantes, aqueles que \"dão rasteira\" nos profissionais e cumprem apenas parte do tratamento. Os depoimentos sugerem que os profissionais de saúde ainda estão pouco capacitados para o cuidado com o paciente com diabetes quanto aos aspectos emocionais mobilizados pelo tratamento. Apesar de o \"caminho do medo\" ser visto como complicado, também é considerado como aquele que leva à obtenção da mudança de hábitos que podem favorecer o bom controle metabólico. As representações dos profissionais também levam em consideração a possibilidade de desenvolver o potencial do paciente para incorporar possíveis mudanças de comportamento em seus aspectos emocionais, o que pode gerar benefícios para o controle da doença. Por fim, os depoimentos configuram uma representação social dos pacientes com diabetes como apresentando altos e baixos, recuos e avanços, no decorrer do tratamento. Conclui-se que as representações sociais dos profissionais de saúde não se limitam a apontar os aspectos emocionais intrínsecos ao paciente que constituem barreiras ao seguimento do plano terapêutico, mas também remetem à importância da relação estabelecida entre profissional de saúde e paciente. Salientam a dificuldade do profissional em entrar em contato com os aspectos emocionais do paciente, em decorrência das repercussões afetivas que estes mobilizam no próprio profissional. Isso mostra a necessidade de investir na qualificação dos profissionais na atenção em diabetes. / This study was aimed at identifying the social representations of health professionals working with diabetes mellitus about emotional aspects of adult diabetes mellitus patients. A descriptive and exploratory study was undertaken with a qualitative approach. Social Representations theory was adopted as the theoretical framework. The study participants were 11 health professionals with a higher education degree, including five nurses, three psychologists, one physician, one physical educator and one nutritionist, working at public institutions and private clinics. Data were collected between March and May 2012. Therefore, a form was used with the health professionals\' sociodemographic data, as well as a semistructured interview script, based on the following guiding questions: What meanings do you, as a health professional, attribute to the emotional aspects related to diabetes mellitus? The data were processed with the help of the content analysis technique, using the software ATLAS.ti - version 6.2.27, which permitted the identification of six categories: Patients should be considered in their emotional and behavioral aspects; Patients\' emotional aspects arouse a refractory attitude towards treatment; Patients\' containment of emotional impulses favors disease control: Professionals are unable to cope with the patients\' emotional aspects mobilized by the treatment; Professionals acknowledge the importance of understanding patients\' emotional aspects with regard to the treatment, envisaging their potential to incorporate changes; Patients\' emotional aspects related to the treatment come with ups and downs, advances and relapses. The results showed that, in the representations the professionals elaborate about the emotional aspects, diabetes patients are represented as revolted, rebellious and reluctant, patients who attempt to deceive the professionals and only comply with part of the treatment. The testimonies suggest that the health professionals still lack training for care delivery to diabetes patients regarding the emotional aspects the treatment mobilizes. Although the \"route of fear\" is considered complicated, it is also considered as the course that leads to the achievement of changed habits that can favor good metabolic control. The professionals\' representations also take into account the possibility of developing the patients\' potential to incorporate possible behavioral changes in their emotional aspects, which can entail benefits to control the disease. Finally, the testimonies reveal a social representation of diabetes patients as experiencing ups and downs, relapses and advances during the treatment. It is concluded that the health professionals\' social representations are not limited to the indication of intrinsic emotional aspects that represent barriers for compliance with the therapeutic plan, but also relate to the importance of the relation established between health professionals and patients. They highlight the professionals\' difficulty to get in touch with the patients\' emotional aspects, due to the affective repercussions these cause in the former. This reveals the need to invest in health professionals\' qualification for diabetes care.