A fibromialgia é uma patologia crônica, de causa desconhecida. É caracterizada por dor, distúrbios do sono e fadiga. Também se observa a presença de distúrbios psicossomáticos como depressão, fobia, síndrome do pânico e ansiedade, aumentando ainda mais a complexidade dos sintomas da doença, além de conduzir a prejuízos na qualidade de vida e capacidade funcional do indivíduo acometido. O tratamento da patologia é difícil, devido à incompleta compreensão da doença e a presença de sintomas muitas vezes atípicos e amplamente diversificados. Diversas modalidades terapêuticas têm sido utilizadas, com diferentes graus de eficácia, incluindo fisioterapia, massagem, acupuntura, exercícios aquáticos, aeróbicos e de fortalecimento, além de terapias cognitivo-comportamentais. Este estudo objetiva avaliar os efeitos de um programa de exercícios respiratórios aquáticos na qualidade de vida, capacidade funcional, dor, dispnéia, ansiedade e qualidade do sono de mulheres com fibromialgia. Foram selecionadas 40 mulheres com idades entre 20 e 60 anos, randomizadas em dois grupos de 20 pacientes: exercícios respiratórios aquáticos (EX) e controle (CT). O grupo EX realizou exercícios durante uma hora, quatro vezes por semana, durante quatro semanas. O programa foi elaborado para seguir uma seqüência incluindo: I) aquecimento (5 minutos); II) exercícios respiratórios, constituídos de cinco padrões respiratórios diferentes e realizados concomitantemente a movimentos de tronco e membros (45 minutos); III) relaxamento (10 minutos). Ambos os grupos realizaram ainda atividades recreacionais, sedentárias, uma hora por semana, uma vez por semana, durante quatro semanas. Foram aplicados questionários antes e depois das intervenções para avaliar a qualidade de vida e capacidade funcional (\"Medical Outcome Study 36 - Item Short Form\" - SF-36, \"Fibromyalgia Impact Questionnaire\" - FIQ), ansiedade (\"Hamilton Anxiety Scale\" - HAS) e qualidade do sono (\"Pittsburg Sleep Quality Index\" - PSQI). O número de pontos dolorosos e dor (VAS - escala visual analógica) também foram avaliados. Na avaliação inicial não foram encontradas diferenças significativas entre os grupos no número de pontos dolorosos, dor e escores de todos os questionários aplicados. Após as intervenções, o grupo EX, comparado com o grupo CT, apresentou melhora dos escores do questionário SF-36 (aspectos físicos p=0,001, dor p=0,001, vitalidade p=0,009, aspectos sociais p=0,001, aspectos emocionais p=0,001), FIQ (escore total p=0,049, faltas ao trabalho p=0,036, fadiga p=0,013, cansaço matinal p=0,007), dor (VAS p=0,029), dispnéia (VAS p=0,004), ansiedade (HAS p=0,005) e qualidade do sono (PSQI p=0,004). Conclui-se que um programa de exercícios respiratórios aquáticos melhora a qualidade de vida, capacidade funcional, dor, dispnéia, ansiedade e qualidade do sono em pacientes com fibromialgia, podendo se tornar uma medida terapêutica relevante no tratamento destes pacientes. / Fibromyalgia syndrome is a chronic rheumatic condition with unknown etiology and unclear pathogenesis. It is characterized by pain, sleep disturbances and fatigue. Psychological symptoms are also observed, including mood disturbance, anxiety, depression, phobia and panic syndrome, contributing to the complex disease symptomatology, as well as to the reduced quality of life and impaired functional capacity observed in these patients. Due to an incomplete understanding of the disease mechanisms, in addition to multiple, non visible symptoms typical of FMS, a patient\'s treatment is a challenging task. Widely varied therapeutic approaches ranging from physical therapy, massage, acupuncture, aerobic and strengthening exercises to cognitive-behavioral therapies have been applied with variable efficacy. This study assessed the effects of aquatic respiratory exercise-based program in the quality of life, functional capacity, pain, dyspnea, anxiety and quality of sleep in patients with fibromyalgia syndrome. Forty women, aged between 20 and 60, were randomly assigned into 2 groups of 20 patients: aquatic respiratory exercise-based program (EX) and control group (CT). EX group performed the exercise program, for 1-hour, 4 times a week, for 4 weeks, which included: I) warm-up; II) respiratory exercises, consisting of 5 different breathing patterns, along with upper, lowers limbs and trunk movements (45min); III) relaxation exercises. Both groups were included in supervised-recreational activities, for 1-hour, once a week, for 4 weeks. Questionnaires were applied before and after intervention to assess quality of life and functional capacity (Medical Outcome Study 36-Item Short Form - SF-36, Fibromyalgia Impact Questionnaire - FIQ), anxiety (Hamilton Anxiety Scale - HAS) and quality of sleep (Pittsburg Sleep Quality Index - PSQI). Number of tender points and pain (VAS - visual analogue scale) were also evaluated. At baseline there was no difference between groups, including number of tender points, pain and questionnaire responses. After intervention, EX group, compared with CT group, showed improvement in SF-36 scores (physical functioning p=.001, bodily pain p=.001, vitality p=.009, social functioning p=.001, emotional role p=.001), in FIQ (total score p=.049, work missed p=.036, fatigue p=.013, morning tiredness p=.007) plus in VAS-pain (p=.029), VAS-dyspnea (p=.004), anxiety (HAS p=.005), and quality of sleep (PSQI p=.004). Short-term aquatic respiratory exercisebased program improved quality of life, functional capacity, pain, dyspnea, anxiety and quality of sleep in patients with fibromyalgia and may be a relevant addition to the treatment of these patients.

A fibromialgia é uma patologia crônica, de causa desconhecida. É caracterizada por dor, distúrbios do sono e fadiga. Também se observa a presença de distúrbios psicossomáticos como depressão, fobia, síndrome do pânico e ansiedade, aumentando ainda mais a complexidade dos sintomas da doença, além de conduzir a prejuízos na qualidade de vida e capacidade funcional do indivíduo acometido. O tratamento da patologia é difícil, devido à incompleta compreensão da doença e a presença de sintomas muitas vezes atípicos e amplamente diversificados. Diversas modalidades terapêuticas têm sido utilizadas, com diferentes graus de eficácia, incluindo fisioterapia, massagem, acupuntura, exercícios aquáticos, aeróbicos e de fortalecimento, além de terapias cognitivo-comportamentais. Este estudo objetiva avaliar os efeitos de um programa de exercícios respiratórios aquáticos na qualidade de vida, capacidade funcional, dor, dispnéia, ansiedade e qualidade do sono de mulheres com fibromialgia. Foram selecionadas 40 mulheres com idades entre 20 e 60 anos, randomizadas em dois grupos de 20 pacientes: exercícios respiratórios aquáticos (EX) e controle (CT). O grupo EX realizou exercícios durante uma hora, quatro vezes por semana, durante quatro semanas. O programa foi elaborado para seguir uma seqüência incluindo: I) aquecimento (5 minutos); II) exercícios respiratórios, constituídos de cinco padrões respiratórios diferentes e realizados concomitantemente a movimentos de tronco e membros (45 minutos); III) relaxamento (10 minutos). Ambos os grupos realizaram ainda atividades recreacionais, sedentárias, uma hora por semana, uma vez por semana, durante quatro semanas. Foram aplicados questionários antes e depois das intervenções para avaliar a qualidade de vida e capacidade funcional (\"Medical Outcome Study 36 - Item Short Form\" - SF-36, \"Fibromyalgia Impact Questionnaire\" - FIQ), ansiedade (\"Hamilton Anxiety Scale\" - HAS) e qualidade do sono (\"Pittsburg Sleep Quality Index\" - PSQI). O número de pontos dolorosos e dor (VAS - escala visual analógica) também foram avaliados. Na avaliação inicial não foram encontradas diferenças significativas entre os grupos no número de pontos dolorosos, dor e escores de todos os questionários aplicados. Após as intervenções, o grupo EX, comparado com o grupo CT, apresentou melhora dos escores do questionário SF-36 (aspectos físicos p=0,001, dor p=0,001, vitalidade p=0,009, aspectos sociais p=0,001, aspectos emocionais p=0,001), FIQ (escore total p=0,049, faltas ao trabalho p=0,036, fadiga p=0,013, cansaço matinal p=0,007), dor (VAS p=0,029), dispnéia (VAS p=0,004), ansiedade (HAS p=0,005) e qualidade do sono (PSQI p=0,004). Conclui-se que um programa de exercícios respiratórios aquáticos melhora a qualidade de vida, capacidade funcional, dor, dispnéia, ansiedade e qualidade do sono em pacientes com fibromialgia, podendo se tornar uma medida terapêutica relevante no tratamento destes pacientes. / Fibromyalgia syndrome is a chronic rheumatic condition with unknown etiology and unclear pathogenesis. It is characterized by pain, sleep disturbances and fatigue. Psychological symptoms are also observed, including mood disturbance, anxiety, depression, phobia and panic syndrome, contributing to the complex disease symptomatology, as well as to the reduced quality of life and impaired functional capacity observed in these patients. Due to an incomplete understanding of the disease mechanisms, in addition to multiple, non visible symptoms typical of FMS, a patient\'s treatment is a challenging task. Widely varied therapeutic approaches ranging from physical therapy, massage, acupuncture, aerobic and strengthening exercises to cognitive-behavioral therapies have been applied with variable efficacy. This study assessed the effects of aquatic respiratory exercise-based program in the quality of life, functional capacity, pain, dyspnea, anxiety and quality of sleep in patients with fibromyalgia syndrome. Forty women, aged between 20 and 60, were randomly assigned into 2 groups of 20 patients: aquatic respiratory exercise-based program (EX) and control group (CT). EX group performed the exercise program, for 1-hour, 4 times a week, for 4 weeks, which included: I) warm-up; II) respiratory exercises, consisting of 5 different breathing patterns, along with upper, lowers limbs and trunk movements (45min); III) relaxation exercises. Both groups were included in supervised-recreational activities, for 1-hour, once a week, for 4 weeks. Questionnaires were applied before and after intervention to assess quality of life and functional capacity (Medical Outcome Study 36-Item Short Form - SF-36, Fibromyalgia Impact Questionnaire - FIQ), anxiety (Hamilton Anxiety Scale - HAS) and quality of sleep (Pittsburg Sleep Quality Index - PSQI). Number of tender points and pain (VAS - visual analogue scale) were also evaluated. At baseline there was no difference between groups, including number of tender points, pain and questionnaire responses. After intervention, EX group, compared with CT group, showed improvement in SF-36 scores (physical functioning p=.001, bodily pain p=.001, vitality p=.009, social functioning p=.001, emotional role p=.001), in FIQ (total score p=.049, work missed p=.036, fatigue p=.013, morning tiredness p=.007) plus in VAS-pain (p=.029), VAS-dyspnea (p=.004), anxiety (HAS p=.005), and quality of sleep (PSQI p=.004). Short-term aquatic respiratory exercisebased program improved quality of life, functional capacity, pain, dyspnea, anxiety and quality of sleep in patients with fibromyalgia and may be a relevant addition to the treatment of these patients.

Compte tenu des risques non-négligeables liés à la prise en charge des personnes souffrant de maladie d'Alzheimer sur la santé globale et le bien-être des aidants informels, l'OMS recommande fortement la mise en place d'interventions à leur égard. Bien que les programmes en ligne représentent un outil prometteur pour ces aidants surchargés, peu de recherches ont été menées sur leur conception et leur efficacité. Le but de cette thèse de doctorat était de contribuer à la connaissance et la compréhension des processus du développement et d'évaluation de ces interventions. Pour cela, quarante-neuf participants (12 professionnels de la santé, 6 aidants et 31 personnes âgées) ont participé au processus itératif de conception du programme Diapason centrée sur l'utilisateur. La dernière version a été évaluée dans un essai clinique randomisé, basé sur des méthodes de recherche mixtes. Quarante-neuf aidants informels de personnes atteintes de maladie d'Alzheimer ont été randomisés soit dans le groupe expérimental (n = 25) ou soit dans le groupe de contrôle (n = 24). Bien que les résultats portant sur l'efficacité du programme ne soient pas concluants, les personnes du groupe expérimental ont significativement augmenté leurs niveaux de connaissance de la maladie (p = 0,008 d' = 0,79). Par ailleurs, l'analyse qualitative a montré que les enfants des patients avaient donné un avis plus favorable que les épouses sur l'utilité du programme. Les résultats de ces travaux offrent des perspectives prometteuses pour ce type d'interventions, en particulier quand elles sont personnalisables et centrées sur les besoins des aidants. Ce travail permet de mieux appréhender les spécificités méthodologiques liées au développement et à l'évaluation des interventions des aidants. / Given the important consequences of caregiving on the overall health and wellbeing of informal caregivers, the WHO strongly recommends interventions for them. Although Internet-based programs represent a promising tool for overburdened caregivers, little research has been conducted about their design and efficacy. The purpose of this PhD dissertation was to contribute to the knowledge and understanding of the development, evaluation, and implementation process of these programs. For this purpose, we involved forty-nine participants (12 healthcare professionals, 6 caregivers, and 31 healthy older-adults) in the iterative user-centered design process for the development of the Diapason program. The latest version of this program was evaluated in a randomized clinical trial, based on mixed methods research. Forty-nine informal caregivers of persons with Alzheimer's disease were randomly assigned to the experimental (n=25) or control group (n=24). Although the results were non conclusive about the program's efficacy, the experimental group significantly improved their knowledge of the disease (p=0.008 d=0.79). Furthermore the qualitative analysis showed that children of patients were more positive than female spouses caregivers about the usefulness of the program. The findings of this research offer promising perspectives for this kind of interventions, particularly when individualized and centered on the needs of caregivers. This work allows for the understanding and analysis of specific methodological features to develop and evaluate caregivers' interventions.

Pain during sexual intercourse, now classified under the single term of genito-pelvic pain/penetration disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), would affect up to 34% of young women and 45% of older women. Provoked vestibulodynia, a chronic pain elicited via pressure to the vulvar vestibule or attempted vaginal penetration, is the most common form of pain during intercourse. Controlled studies have shown that provoked vestibulodynia has multiple deleterious physical, psychological, sexual and relational impacts and thus greatly affects women’s quality of life, as well as their partners’. Provoked vestibulodynia occurs in the very intimate context of sexual intercourse. In that context, women’s self-concept could be negatively affected. Moreover, research among couples with provoked vestibulodynia has demonstrated the role of interpersonal factors in the modulation of women’s pain and associated consequences for both partners. Considering the documented efficacy of cognitive-behavioural therapy for chronic pain, including provoked vestibulodynia, and the importance of the relational context for this condition, a new cognitive-behavioural couple therapy has been developed by our team. It is the first treatment to take into account the interpersonal context of provoked vestibulodynia. Furthermore, we lack empirical evidence on mediators of change of cognitive-behavioural therapy for provoked vestibulodynia and on positive psychological factors that could foster better adjustment for women and their partners. The objective of this thesis was to use a dyadic perspective to examine the role of self-compassion in the adjustment of couples coping with provoked vestibulodynia, as well as the roles of both partners’ pain self-efficacy and pain catastrophizing as mediators of change in cognitive-behavioural couple therapy. The first study examined the associations between self-compassion of women with provoked vestibulodynia and their partners and their depression, anxiety, sexual distress and relational satisfaction as well as women’s pain intensity during intercourse. Forty-eight couples with provoked vestibulodynia completed self-report questionnaires. For both women and their partners, higher levels of self-compassion were associated with their own lower anxiety and depression. When partners reported higher levels of self-compassion, they were more satisfied with their relationship, and both partners and women reported lower sexual distress. No significant association was found for pain during intercourse. The second article examined pain self-efficacy and catastrophizing as mediators of therapeutic change regarding pain, sexual distress and sexual function in cognitive-behavioural couple therapy for provoked vestibulodynia. Because cognitive-behavioural couple therapy did not improve significantly more pain self-efficacy relative to lidocaine treatment, this variable was not included in subsequent mediation models. In women with provoked vestibulodynia, greater decreases in pain catastrophizing in cognitive-behavioural couple therapy, as compared to the lidocaine control condition, mediated reductions in pain intensity and sexual distress as well as improvement of sexual function. In partners, greater decreases in pain catastrophizing in cognitive-behavioural couple therapy, as compared to the lidocaine control condition, mediated reductions in sexual distress and improvement of sexual function. Partners’ pain catastrophizing reductions also mediated women’s decrease in sexual distress. Implications of results, as well as theoretical, methodological and clinical contributions of the thesis are discussed. / Les problèmes de douleur durant les relations sexuelles, maintenant désignés par le terme « douleur génito-pelvienne » dans le Manuel diagnostique et statistique des troubles mentaux (DSM-5), toucheraient jusqu’à 34% des jeunes femmes et 45% des femmes plus âgées. La cause la plus fréquente de douleur génito-pelvienne serait la vestibulodynie provoquée (VP). Les études contrôlées indiquent que la VP a des conséquences négatives multiples, physiques, psychologiques, sexuelles et relationnelles, et hypothèque donc grandement la qualité de vie des femmes qui en souffrent, ainsi que celle de leurs partenaires. Une particularité de ce problème de douleur chronique est le contexte dans lequel il survient, soit celui des relations intimes. Dans ce contexte, l'image que les femmes souffrant de VP ont d'elles-mêmes en tant que partenaires sexuelles serait affectée. De plus, la recherche a démontré l’influence des facteurs interpersonnels sur l’intensité de la douleur et les conséquences psychologiques et sexuelles associées. Considérant l’efficacité documentée des thérapies cognitivo-comportementales (TCC) pour la douleur chronique, incluant la VP et l’importance du contexte relationnel de cette problématique, une nouvelle TCC de gestion de la douleur a été développée pour les couples. Ce traitement vient combler une lacune importante du domaine puisqu’aucun autre traitement à ce jour ne tient compte de l’influence des facteurs interpersonnels. Par ailleurs, le manque de connaissance des mécanismes de changement sous-tendant l’efficacité des traitements psychologiques pour la VP ainsi que le peu d’études sur les facteurs psychologiques qui joueraient un rôle protecteur chez les femmes souffrant de VP sont d’autres limites du domaine. Afin de pallier ces lacunes, l’objectif de la thèse était d’examiner dans une perspective dyadique le rôle de l’auto-compassion dans l’ajustement de couples faisant face à la VP, de même que le rôle du catastrophisme et l’auto-efficacité comme médiateurs de changement dans le cadre d’un essai clinique randomisé évaluant l’efficacité de la thérapie cognitive-comportementale de couple (TCCC). Le premier article de la thèse visait à examiner les liens entre l’auto-compassion et l’ajustement psychologique et sexuel des femmes souffrant de VP et de leurs partenaires. Quarante-huit couples ont complété des questionnaires auto-rapportés. Les analyses ont montré que plus d’auto-compassion chez les femmes souffrant de VP était associée à moins de symptômes dépressifs et anxieux chez celles-ci. Plus d’auto-compassion chez les partenaires était aussi associée à moins de symptômes dépressifs et anxieux de même que plus de satisfaction relationnelle chez ceux-ci. De plus, des niveaux plus élevés d’auto-compassion chez les partenaires étaient aussi associés à moins de détresse sexuelle pour eux et pour l’autre membre du couple, soit la femme souffrant de VP. Aucune association avec l’intensité de la douleur n’était significative. Dans le deuxième article de la thèse, l’auto-efficacité et le catastrophisme ont été examinés en tant que médiateurs de changement thérapeutique au cours de la TCCC, comparée à un traitement médical, la lidocaïne topique. Puisque la TCCC n’améliorait pas l’auto-efficacité significativement plus que le traitement de lidocaïne, cette variable n’a pas été incluse dans les modèles de médiation. La TCCC, en comparaison avec le groupe contrôle de lidocaïne, diminuait significativement la douleur, la détresse sexuelle et la fonction sexuelle des femmes via la plus grande diminution de leurs propres niveaux de catastrophisme, en comparaison au groupe contrôle de lidocaïne. La plus grande diminution du catastrophisme chez les partenaires, en comparaison au groupe contrôle, expliquait également les améliorations quant à leur propre détresse et fonction sexuelle. Enfin, la plus grande diminution du catastrophisme chez les partenaires expliquait la diminution de la détresse sexuelle des femmes dans le groupe TCCC, en comparaison au groupe contrôle. Les implications de ces résultats et les contributions théoriques, cliniques et méthodologiques de la thèse sont discutées.