Huntington disease (HD) is a degenerative neurological disease that typically onsets in midlife. It leads to progressively severe impairment in cognitive, behavioral, and motor function and premature death. Persons who test positive for the HD gene expansion know they will develop the disease. Research indicates changes are detectable several years before onset. Thus, HD has a long prodromal period (prHD). While researchers are aware of changes, little is known whether persons with prHD or their companions notice changes, or how they make sense of and cope with them. Leventhal and colleagues developed the Common Sense Model of Illness Representation (CSM) to describe how people make sense of illness. According to the CSM, people notice somatic changes, form illness representations, select coping procedures and evaluate them, and reappraise illness representations in an iterative process. The CSM has been used to explore illness representations in a variety of illnesses, including diagnosed HD. The authors of the model state it is also applicable in anticipated illness but this assertion has not been adequately tested. The purpose of this thesis was to use the CSM to explore and describe illness representations in persons with prHD and their companions. The results of this exploration are presented in three papers. The first paper, presented in Chapter 2, was a preliminary study based on interview data from 8 persons and 7 companions. Results of this analysis indicated persons with prHD and companions noticed and made attributions for changes, suggesting they formed illness representations. However, they were unsure whether some changes were related to HD. Results were considered preliminary because participants were not directly asked to make attributions. Data were also limited to changes in work function and the sample size was small. In the next two papers, 23 couples were interviewed. The purpose of the second paper, presented in Chapter 3, was to explore illness representations in persons with prHD and their companions and evaluate the usefulness of the CSM in anticipated illness using prHD as a model. Results supported preliminary findings: Participants noticed changes, made attributions, used coping strategies and evaluated them. Again, they unsure whether some changes were related to HD. Other elements of the CSM were partially supported by the data. The third paper, presented in Chapter 4, used quantitative and qualitative methods to explore coping in persons with prHD and companions. Participants were asked open-ended questions about how they coped with changes and were also verbally administered the Brief COPE scale. Both quantitative and qualitative data showed participants used active coping, acceptance, planning, and social support. Participants rarely used denial or substance abuse. Persons with prHD used more coping strategies than companions. Three major themes from the qualitative interview were identified: trying to fix it, can't fix it, and not broken yet. Qualitative interviews revealed some coping strategies that the Brief COPE did not measure. Findings from these papers may inform interventions to help people with prHD and companions cope with changes. Persons with prHD and companions might benefit from knowing what changes might be related to HD in order to cope more effectively.

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Yes / Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support. / The IDEAL study is funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’.

Adipositas gilt seit einigen Jahren als eine der häufigsten chronischen Erkrankungen des Kindes- und Jugendalters. Welche Faktoren zu einer erfolgreichen Behandlung der Adipositas im Kindes- und Jugendalter führen, sind jedoch noch immer nicht ausreichend geklärt. Ein wichtiger – bisher jedoch weitgehend unbeachteter – Faktor, welcher möglicherweise wegweisend für den Therapieverlauf sein kann, ist das subjektive Krankheitskonzept der betroffenen Kinder. Das bedeutsamste theoretische Modell, welches den Einfluss der individuellen Krankheitsvorstellungen auf den Regulationsprozess eines Menschen im Umgang mit Erkrankungen beschreibt, ist das Common Sense Model of Illness Representation (CSM) von Howard Leventhal. Ziel der vorliegenden Arbeit war es die subjektiven Krankheitskonzepte adipöser Kinder zu erfassen und ihren Einfluss auf den Regulationsprozess zu analysieren. In einer ersten Untersuchung wurde mittels Daten von 168 adipösen Kindern im Alter von 8 bis 12 Jahren zunächst ein Fragebogen zur Erfassung der subjektiven Krankheitskonzepte entwickelt. Die Ergebnisse weisen darauf hin, dass der Fragebogen als reliabel und valide eingeschätzt werden kann. Mit Hilfe dieses Fragebogens konnte nachgewiesen werden, dass adipöse Kinder Konstrukte über ihre Erkrankung haben, welche in eigenständigen Dimensionen gespeichert werden. Die gefundenen initialen Krankheitskonzepte adipöser Kinder ergeben ein homogenes erwartungskonformes Bild. In einer zweiten Untersuchung wurden anschließend die subjektiven Krankheitskonzepte adipöser Kinder, die Bewältigungsstrategien sowie gesundheits- und krankheitsrelevante Kriteriumsvariablen untersucht. Die Befragungen erfolgten vor Beginn einer stationären Reha (T1), am Ende der Reha (T2) sowie sechs Monate nach Reha-Ende (T3). Von 107 Kindern liegen Daten zu allen drei Messzeitpunkten vor. Es konnte ein Zusammenhang zwischen Krankheitskonzepten, Bewältigungsstrategien und spezifischen Kriteriumsvariablen bei adipösen Kindern nachgewiesen werden. Die Analyse der Wirkzusammenhänge konnte zeigen, dass die kindlichen Krankheitskonzepte – neben den indirekten Einflüssen über die Bewältigungsstrategien – die Kriteriumsvariablen vor allem auch direkt beeinflussen können. Der Einfluss der initialen Krankheitskonzepte adipöser Kinder konnte hierbei sowohl im querschnittlichen als auch im längsschnittlichen Design bestätigt werden. Zudem konnten vielfältige Einflüsse der Veränderung der subjektiven Krankheitskonzepte während der Therapie gefunden werden. Die Veränderungen der Krankheitskonzepte wirken sowohl mittelfristig auf die individuellen Bewältigungsstrategien am Ende der Reha als auch längerfristig auf die adipositasspezifischen Kriteriumsvariablen Gewicht, Ernährung, Bewegung und Lebensqualität. Die Befunde stärken die Relevanz und das Potential der zielgerichteten Modifikation adaptiver bzw. maladaptiver Krankheitskonzepte innerhalb der stationären Therapie der kindlichen Adipositas. Zudem konnte bestätigt werden, dass subjektive Krankheitskonzepte und ihre Veränderung innerhalb der Therapie einen relevanten Beitrag zur Vorhersage des kindlichen Therapieerfolgs über einen längerfristigen Zeitraum leisten können. / Obesity has been considered one of the most common chronic illnesses in children and adolescents for some years. The factors that contribute to a successful treatment of obesity in children and adolescents have however yet to be adequately identified. One important – but so far largely neglected – factor which could be crucial to the therapeutic process is the subjective concept of illness in the children affected. The most significant theoretical model to describe the influence of the individual notions of illness on a person’s regulatory process in dealing with illnesses is the Common Sense Model of Illness Representation (CSM) developed by Howard Leventhal. The aim of this thesis was to record the subjective concepts of illness in obese children and to analyse their influence on the regulatory process. In a first study, a survey was developed to collect data on the subjective concepts of illness in 168 obese children between the ages of 8 and 12 years. The results indicate that the survey can be considered reliable and valid. With the aid of this survey, it could be proven that obese children have constructs of their illness that are stored in independent dimensions. The initial concepts of illness found in obese children give a homogeneous picture that conforms to expectations. A second study analysed the subjective concepts of illness in obese children, as well as coping strategies and health and illness-relevant criterion variables. Surveys were carried out before the start of in-patient rehab (T1), at the end of rehab (T2) and six months after the end of rehab (T3). The data of 107 children is available from all three instances of measurement. It was possible to prove a connection between concepts of illness, coping strategies and specific criterion variables in obese children. An analysis of cause-and-effect relationships was able to demonstrate that – as well as indirectly influencing the coping strategies – the children’s concepts of illness had above all a direct influence on the criterion variables. The influence of the initial concepts of illness in obese children could thus be confirmed both in a cross-sectional and in a longitudinal design. In addition, multiple influences were found of changes to the subjective concepts of illness in the course of therapy. Changes to concepts of illness have both a medium-term effect on individual coping strategies at the end of rehab and a longer-term effect on the obesity-specific criterion variables weight, diet, movement and quality of life. The findings reinforce the relevance and potential of the goal-orientated modification of adaptive or maladaptive concepts of illness within the in-patient treatment of childhood obesity. In addition, it was confirmed that subjective concepts of illness and the changes they undergo during therapy can provide a relevant contribution to predicting the success of a child’s therapy over a longer period of time.

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Diese Untersuchung beschäftigt sich mit der Frage, welche Krankheitskonzepte depressiven Patienten (ICD-10) und ihre Partnern haben und welche Behandlungs-erfahrungen gemacht wurden. Das Ziel der Untersuchung besteht darin, auf der Grundlage einer ressourcenorientierten explorativen Sichtweise die rehabilitativen Möglichkeiten für depressive Patienten und ihre Partner zu erweitern und geschlechtsspezifische Unterschiede einzubeziehen. Die Forschung zur Compliance macht deutlich, dass die Übereinstimmung der Krankheitskonzepte die Behandlungsergebnisse entscheidend verbessern kann. Es wurde den Fragen nachgegangen, worin sich die Attributionen auf Krankheitsursachen bei Patienten und ihren Partnern unterscheiden und welche Auswirkungen sich für das partnerschaftliche Unterstützungsverhalten ergeben. Zudem wurden die motiva-tionalen Schemata auf der Grundlage der Konsistenztheorie (Grawe, 1998; 2004) erhoben, Geschlechtsunterschiede und die Partnerschaftsqualität beachtet. Als Theorien wurden zum Beispiel die Theorie der wahrgenommenen Verantwortlichkeit (Weiner, 1986) und der gelernten Hilflosigkeit (Seligman, 1975; Abramson, Seligman & Teasdale, 1978) und daraus Fragestellungen entwickelt. Diese Arbeit hat sich die Aufgabe gestellt, die persönlichen Besonderheiten der depressiven Patienten und ihrer Partner zu beachten. Die Methodik besteht aus einem semistrukturierten qualitativen Interview sowie standardisierten Fragebögen. Es wurden 46 depressive Patienten und 46 Partner einer Psychiatrie- und Psychotherapiestation untersucht. Es konnten verschiedene Zusammenhänge zwischen der Partnerschaftsqualität, der partnerschaftlichen Unterstützung, den Einstellungen und motivationalen Schemata gefunden werden. Die Ergebnisse zeigen, dass geschlechtsspezifische Unter-schiede bei Patienten und Partnern viel stärker in der Therapie beachtet werden sollten. Es konnte gezeigt werden, dass sich innerhalb der diagnostischen Zuord-nung einer Depression sehr verschiedene individuelle Krankheitskonzepte bei Patienten und bei den Partnern ergeben. Es lassen sich jedoch auch Probleme aufzeigen, die mit einem leitlinienorientierten Vorgehen in der Psychotherapie verbunden sind. Die qualitative Befragung konnte innere Prozesse und Entwicklungen gut sichtbar machen, die quantitative Methodik der Fragebögen bildete Status und überdauernde Motive gut ab. Mögliche Anwendungen und Impli-kationen für die klinische Praxis sowie die Einbeziehung der Partner werden diskutiert. / This study is employed with the questions what kind of illness representations and experiences of examination are generated by depressive patients (ICD-10) and their partners. The goal is existed in finding more possibilities in rehabilitation and therapy for the couples are based on resources and sex differences. The research of compliance comes to the resolution that the agreement in illness representations is able to improve the outcomes of therapy. Therefore, the questions are, which differences in illness representations by patients and partners, expectations, solutions of support by the couples, males and females can be found and what are the consequences for compliance and their relationship. Then, the motivational schemata based on the consistence-theory (Grawe, 1998; 2004) were considered. On basic were included the theories of perceived responsibility (Weiner, 1986) and learned helplessness (Seligman, 1975; Abramson, Seligman & Teasdale, 1978) and then developed individual questions. The method is a mixed design in qualitative (semi-structured interview) and quantitative instruments (tests). Data are used from 92 persons, 46 patients they are in clinical treatment and their partners. There are found that quality of partnership is associated with support, the expectations, attitudes and individual motivational schemata of the persons. Sex differences should be stronger observed in treatment. Turns out, into the notation “depression”, there are different individual illness representations of patients and their partners. The application of guideline-oriented procedures in psychotherapy has been criticized. Qualitative interviews were appropriate to describe processes and developments, quantitative tests were appropriate to expose the status and outlasting motives. Results are presented in terms of their implications for supporting treatment and involving partners into this process.

Submitted by Mariana Dornelles Vargas (marianadv) on 2015-05-29T17:36:45Z No. of bitstreams: 1 percepcao_sobre.pdf: 624117 bytes, checksum: 32c35c4fe3164fc8bd6f5aca246544df (MD5) / Made available in DSpace on 2015-05-29T17:36:45Z (GMT). No. of bitstreams: 1 percepcao_sobre.pdf: 624117 bytes, checksum: 32c35c4fe3164fc8bd6f5aca246544df (MD5) Previous issue date: 2012-05 / Nenhuma / Esta dissertação é composta por dois artigos, o primeiro deles de revisão sistemática da literatura e o segundo um artigo empírico. No estudo 1, buscou-se realizar uma revisão sistemática da literatura internacional sobre percepção da doença e o câncer. Foram encontrados 11 artigos. Os resultados mostraram que os estudos são diversos e o foco das pesquisas é abrangente, relacionando a percepção sobre a doença e o câncer em diversas situações, especialmente na qualidade de vida. No estudo 2, o objetivo foi avaliar e comparar as percepções sobre o câncer do colo do útero em três grupos de mulheres: 1) mulheres com diagnóstico de câncer do colo do útero e em tratamento para a doença; 2) mulheres com lesões precursoras de câncer uterino ou contaminadas pelo HPV; e 3) mulheres sem a doença e sem lesão precursora. Participaram da pesquisa 150 mulheres adultas em atendimento ambulatorial de ginecologia e ambulatório de oncologia em dois hospitais de Porto Alegre (RS). Foram utilizadas como instrumentos a ficha de Dados Sociodemográficos e Clínicos, o Questionário de percepção sobre a doença Revised Illness Perception Questionnaire (IPQ-R) e Revised Illness Perception Questionnaire for Healthy People (IPQ-RH). Os resultados mostraram diferenças na percepção entre os grupos nas dimensões identidade (F=11,654, p<0,001), duração cíclica da doença (F=4,416, p<0,05) e causas da doença (F=15,941; p<0,001), o que mostra que as mulheres saudáveis apresentaram percepções positivas em relação à doença, diferente das mulheres com lesão e com câncer. As percepções entre os três grupos se assemelharam nas seguintes dimensões: duração da doença (aguda/crônica), consequência da doença, controle pessoal e do tratamento, coerência da doença e representações emocionais. / This dissertation consists of two articles, the first one being a systematic review of the literature and the second an empirical study. In study 1, it sought to conduct a systematic review of international literature regarding the perception of the disease and the cancer itself. 11 articles were found. The results showed that the studies are diverse and the focus of research is comprehensive, listing the perception about the disease and the cancer in various situations, especially in terms of quality of life. In study 2, the objective was to evaluate and compare the perceptions about cervical cancer found in three groups of women: 1) women diagnosed with cervical cancer and undergoing treatment for the disease; 2) women with uterine early stage cancer lesions or with HPV infections; and 3) women not having the disease nor the early stage cancer lesions. 150 adult women participated in the study at clinical gynecology and oncology outpatient clinics in two hospitals in Porto Alegre (RS). as instruments, the Demographic and clinical data sheet, the Questionnaire of perception about the disease Revised Illness Perception Questionnaire (IPQ-R) and Revised Illness Perception Questionnaire for Healthy People (IPQ-RH) were used. The results showed differences in perception between the groups in the identity dimensions (F = p < 0.001 11.654,), cyclic duration of disease (F = 4.416, p < 0.05) and causes of disease (F = 15.941, p < 0.001), which shows that healthy women showed positive perceptions in relation to disease, different from women with cancer and lesions. Perceptions among the three groups resembled each other in the following dimensions: length of the disease (acute/chronic), as a result of illness, personal control and consistency of treatment, disease and emotional representations.

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Submitted by Fabricia Fialho Reginato (fabriciar) on 2015-07-08T00:02:10Z No. of bitstreams: 1 CarlaGross.pdf: 1470768 bytes, checksum: 68e5843c4e0bac8fa3dd308f573bb27f (MD5) / Made available in DSpace on 2015-07-08T00:02:11Z (GMT). No. of bitstreams: 1 CarlaGross.pdf: 1470768 bytes, checksum: 68e5843c4e0bac8fa3dd308f573bb27f (MD5) Previous issue date: 2012 / Nenhuma / Esta dissertação é composta por dois artigos, o primeiro é uma revisão sistemática da literatura e o outro é um artigo empírico. O foco de investigação foi a percepção sobre a doença renal crônica, as estratégias de enfrentamento e a adesão em pacientes em hemodiálise. No estudo I, realizou-se uma revisão sistemática da literatura internacional em relação à percepção sobre a doença e a doença renal crônica em pacientes em hemodiálise no período de 2001-2012, nas bases de dados Academic Search Premier e Medline with Full Text. Encontrou-se 17 artigos de delineamento quantitativo, que foram publicados em diferentes revistas da área da saúde e por diferentes profissionais. Os resultados apontam que o conceito de percepção sobre a doença é útil para compreensão do impacto da DRC e do tratamento em HD para a qualidade de vida desses pacientes. A percepção negativa da doença foi relacionada à não-adesão ao tratamento recomendado e tiveram relação com comportamentos de autocuidado, sintomas de depressão, qualidade de vida, mortalidade e sobrevida, e na adesão ao tratamento à Medicina Complementar e Alternativa - CAM, e às percepções negativas na não-adesão ao tratamento desses pacientes. O IPQ-R é o instrumento mais utilizado e útil para avaliar as percepções sobre a doença. Já no estudo 2, o objetivo foi investigar a relação entre as percepções sobre a doença renal crônica, as estratégias de enfrentamento e a adesão ao tratamento em pacientes em HD, e o possível poder preditivo das percepções sobre a doença e do enfrentamento para a adesão ao tratamento em hemodiálise. Participaram do referido estudo 70 pacientes adultos em tratamento hemodialítico na região do Litoral Norte do Rio Grande do Sul. Os instrumentos utilizados foram o questionário de dados sociodemográficos, ficha de dados clínicos e avaliação da adesão, questionário de percepção sobre a doença – Illness Perception Questionnaire (IPQ-R), e o questionário de estratégias de enfrentamento - Coping with Health Injuries and Problems (CHIP). Algumas dimensões da percepção da doença correlacionaram-se positivamente com algumas dimensões do enfrentamento: duração cíclica da doença e as dimensões do enfrentamento paliativo, distração e preocupações emocionais; consequências da doença e enfrentamento das preocupações emocionais; controle do tratamento e enfrentamento paliativo e instrumental; percepção emocional e enfrentamento das preocupações emocionais; e por fim, a dimensão coerência da doença correlacionou-se negativamente com o enfrentamento instrumental. As dimensões de identidade, duração cíclica e consequências da doença correlacionaram-se negativamente com a adesão percebida pelas enfermeiras, enquanto os níveis de potássio também tiveram correlação negativa com a dimensão relativa às consequências da doença. A análise preditiva mostrou que apenas a dimensão referente às consequências foi preditora da adesão percebida pelas enfermeiras (8,6% da sua variância) e dos níveis de potássio (6,7% da variância). Conclui-se que a percepção sobre as consequências da doença é uma dimensão importante de ser avaliada nos pacientes em hemodiálise para prever possíveis problemas de adesão ao tratamento. Entende-se, também, que estes resultados poderão contribuir para um melhor atendimento a esses pacientes. / This dissertation comprises two articles. First one is a systematic literature review, whereas the second is an empyrical article. The investigation focuses on chronic kidney disease perception, coping strategies and adherence in hemodialysis patients. In Study I, a systematic review of international literature on illness perception and chronic kidney disease in hemodialysis patients in the period 2001-2012 was carried out. It was done on the databases Academic Search Premier and Medline with Full Text. 17 articles were found on quantitative delineation, which were published in different health magazines by various professionals. Results indicate that the concept of illness perception is useful to understand the impact of CKD and HD treatment on these patients' quality of life. Negative perception of the disease was associated with non-adherence with the recommended treatment and was related to self care behaviour, depression symptoms, quality of life, mortality and extended survival. Negative perception was also associated with adherence with treatment by Complimentary and Alternative Medicine - CAM, and with the negative perceptions in these patients' non-adherence with the treatment. The IPQ-R is the most used and useful tool to evaluate illness perception. In study 2, the objective was to investigate the relation between chronic kidney disease perception, coping strategies and adherence with treatment in HD patients, and the possible predictive power of illness perception and coping to adherence with hemodialysis treatment. 70 adult patients in hemodialytic treatment on the North Coast of the Brazilian state of Rio Grande do Sul took part in study 2. The instruments used were the sociodemographic data questionnaire, medical chart and adherence evaluation, the Illness Perception Questionnaire (IPQ-R) and the coping strategies questionnaire - Coping with Health Injuries and Problems (CHIP). Some illness perception dimensions were positively correlated to some coping dimensions: cyclic illness duration and palliative coping dimensions, distraction and emotional worry; illness consequences and emotional worry coping; treatment control and instrumental and paliative coping; emotional perception and emotional worry coping; and last, the dimension illness coherence was negatively correlated to instrumental coping. The dimensions identity, cyclic duration and illness consequences were negatively correlated to perceived compliance by nurses, whereas potassium levels also were negatively correlated to the illness consequences dimension. Predictive analysis showed that only the dimension related to the consequences was predictive of the adherence perceived by nurses (8,6% of its variance) and the potassium levels (6,7% of the variance). In conclusion, the perception of the illness consequences is an important dimension to be evaluated in hemodialysis patients in order to predict possible problems on treatment adherence. The results can also contribute for a better approach to these patients.