Dissertationen zum Thema „Amputation – Psychologie“

Cette étude porte sur la clinique des demandes d'amputation d'un membre sain ou viable ou d'acquisition d'une paralysie. Nous suivons l'évolution nosographique de la condition et les enjeux diagnostiques et éthiques qu'elle soulève. Dix entretiens auprès de neuf hommes et une femme souhaitant une amputation ou une paralysie ont été effectués. Les témoignages mettent à jour la composante sexuelle de l'apotemnophilie, gravitant autour de la fétichisation d'un membre manquant. Nous analysons la structure du fantasme d'amputation sous-jacent et les transmutations que subit la représentation de la différence des sexes sous ce prisme. Le constat que les membres inférieurs sont majoritairement visés souligne les liens entre désir d'amputation et mobilité, convoquant un versant topique et spatial du processus de séparation, en écho avec les réaménagements psychiques concomitants à l'acquisition de la marche et ses vicissitudes. En surface une démarche de privation, le souhait d'un handicap moteur correspond à une tentative d'«auto-portage». A l'aide du paradigme du ex-voto et de la relique, nous considérons le détachement d'une partie du corps comme réponse à une exigence sacrificielle ; mouvement pris dans un commerce intersubjectif, les parties et les fonctions du corps pouvant servir de «monnaie d'échange». Se dégage ainsi une tentative de négociation de la séparation et de maîtrise de la perte, inscrite sur les lieux du corps propre, opération à caractère (anti)mélancolique. Le caractère enclavé, paradoxal et intraduisible de cette formation constitue en même temps un rempart contre une éclosion psychotique et une modalité de sauvegarde in extremis de l'identité sexuée
The object of this study is the request for voluntary limb amputation or paralysis. We follow the nosographie evolution of the condition, addressing the diagnostic and ethical issues it raises. Nine men and one woman with an amputation or paralysis wish were interviewed. These accounts put forth apotemnophilia's sexual component, gravitating around the fetish of a missing limb. We analyze the structure of the underlying amputation fantasy and the way the representation of the difference between sexes transmutes under this prism. The primary focus on the inferior limbs emphasizes the relationship between amputation desire and mobility, highlighting a spatial dimension of the separation process that echoes the psychic modifications concomitant to the acquisition of walking and its vicissitudes. While manifestly a deprivation move, the wish for a motor handicap corresponds to a maneuver of "self-portage". Based on the ex-voto and the relie paradigms, the detachment of a body part is viewed as a response to a sacrificial demand; a process involved in an intersubjective commerce, with body parts and functions potentially serving as a "bargaining chip". Thus, the detachment of a body part reflects a means to negotiate separation and a mastering of the loss, inscripted on the body itself, a(n) (anti)melancholic process. The enclaved, paradoxical and untranslatable character of this formation constitutes simultaneously a rampart against psychosis and offers in extremis a way of preserving sex and sexual identity

Cette recherche porte sur une expérience particulièrement éprouvante : le traumatisme de l’amputation de membre. Qu’elle soit accidentelle ou médicale, la perte dont témoigne le moignon entraine des conséquences à la fois physiques et psychologiques. Elle s’inscrit dans le champ des recherches sur les liens résilience et culture développées notamment en Amérique du Nord. Pour réaliser cette recherche nous nous sommes appuyés sur une méthodologie qualitative. La recherche a été menée auprès de personnes amputées dans deux univers culturels : Haïti (N=20) et la France (N=12), au moyen de deux méthodes : le photolangage® et l’entretien clinique de recherche. Les résultats, sous forme de 5 études, montrent une nette différence entre les deux populations. Alors que les personnes rencontrées en Haïti mettent beaucoup en avant la spiritualité (les croyances et la pratique religieuses) et le soutien de la famille comme ressources culturelles, en France les personnes ont surtout insisté sur la nécessité d’avoir des services de protection sociale de qualité. Le soutien de la famille est aussi un élément important, mais il est plus marqué en Haïti où l’adaptation des espaces publics et l’intégration des personnes porteuses de handicap restent des défis majeurs. Dans la discussion nous mettons l’accent sur les enjeux du cadre culturel et les facteurs de protection qui contribuent au processus de résilience des personnes amputées de membre. Et puis, pour orienter les résultats de la recherche dans une perspective de soin, nous avons présenté l’esquisse d’un dispositif de soin qui pourra accueillir des personnes ayant été confronté à une expérience traumatique et qui font appel à leurs ressources culturelles pour y mettre du sens.Mots clés : traumatisme – amputation de membre – processus de résilience – ressources culturelles – liens familiaux
This research focuses on a particularly trying experience: the trauma of limb amputation. Whether accidental or medical, the loss evidenced by the stump has both physical and psychological consequences. It is part of the research on the links between resilience and culture developed in North America in particular. To carry out this research, we used a qualitative methodology. The research was carried out with amputees in two cultural universes: Haiti (N=20) and France (N=12), using two methods: photolangage® and the clinical research interview. The results, in the form of 5 studies, show a clear difference between the two populations. Whereas the people we met in Haiti put a lot of emphasis on spirituality (religious beliefs and practice) and family support as cultural resources, in France the people stressed above all the need for quality social welfare services. Family support is also an important element, but more so in Haiti, where the adaptation of public spaces and the integration of people with disabilities remain major challenges. In the discussion, we focus on the challenges of the cultural framework and the protective factors that contribute to the resilience process of limb amputees. And then, to orient the results of the research in a care perspective, we present the outline of a care device that could accommodate people who have been confronted with a traumatic experience and who call on their cultural resources to make sense of it.Key words: trauma - limb amputation - resilience process - cultural resources - family

Le codage de la position et des mouvements des différents segments corporels implique l’intervention coordonnée des systèmes perceptifs visuel et proprioceptif. L’objectif de ce travail de thèse était de caractériser la nature de ces interactions dans le contrôle moteur. Notre démarche, basée sur une investigation par les potentiels évoqués consistait à mesurer l’activité électrique du cortex moteur primaire lors d’une activité visuomotrice. Nous avons pu montrer que la simple vue d’un effecteur (e. G. , main) suffit pour provoquer une planification motrice dans le cortex moteur correspondant, qu’il s’agisse effectivement de l’effecteur ou qu’il s’agisse d’une image reconstituée artificiellement, par le biais d’un miroir reflétant la main opposée, par exemple. Ces résultats attestent de l’influence de la vision sur les processus de planification du mouvement et fournissent une mesure objective des effets de la vision sur le cortex moteur. Dans un second temps, nous avons étudié l’influence du feedback visuel lorsque le membre est absent, avec des patients amputés du membre supérieur. Cette approche nous a permis d’évaluer l’impact de l’expérience perceptive en comparant les données d’amputés traumatiques avec celles de personnes agénésiques, dont l’origine de l’absence du membre est congénitale. Ainsi nous montrons que l’activation motrice corticale peut être générée par un feedback visuel du membre absent seulement si le système moteur est (sujets sans déficit sensorimoteur) ou a été fonctionnel (amputés traumatiques). De plus, nous montrons que cette activité corticale reflète une programmation motrice en cohérence avec le mouvement à effectuer. En effet, les performances motrices dans une tâche de dessin en miroir sont meilleures chez ces sujets lorsqu’ils ont un feedback sagittal de leur main active (i. E. Donnant l’impression de voir leur main absente). Nous proposons que le feedback visuel provoque la réactivation de programmes moteurs existants, en lien avec la main vue et la tâche à réaliser. Ces résultats fournissent une preuve directe de la persistance fonctionnelle des régions dénervées suite à l’amputation traumatique d’un membre.

Ce travail porte sur deux thèmes principaux. Le premier est relatif à la drépanocytose et comprend deux études. La première a examiné les connaissances qu’ont 178 hommes et femmes vivant au Bénin sur la maladie, ses causes, ses effets et sa prise en charge. Ils ont répondu à un questionnaire et, leurs réponses ont été comparées à celles d’un groupe d’expert. Il en est ressorti qu’il existait une méconnaissance globale de la maladie, et plus particulièrement de ses symptômes les plus graves et de son traitement. Les résultats révèlent que plus on a un niveau d’éducation élevé, moins on se fait de fausses idées concernant la maladie. En outre, cette méconnaissance était plus accrue chez les personnes se déclarant porteuses du trait génétique (4.83) ou drépanocytaire (5.19) que chez les personnes ayant déclaré ne pas être porteuses (3.72) ou saines (3.62). La deuxième étude a quant à elle cherché à savoir si les 137 personnes interrogées vivant au Bénin, avaient intégré de façon adéquate les règles de transmission génétique de la maladie, en se basant sur la théorie fonctionnelle de la cognition. L’analyse des données a permis de distinguer trois clusters distincts. Dans le premier groupe (n=46), les personnes jugeaient ainsi le risque de transmission de la maladie plus élevé en présence de l’un ou l’autre des deux parents atteints. Dans le deuxième groupe (n=51), le risque était jugé d’autant plus grand que chacun des parents était lui-même gravement atteint. Dans le troisième groupe (n=40), le risque n’avait été jugé élevé qu’en présence des deux parents atteints. Le deuxième thème a donné lieu à une étude, visant à examiner les motifs pouvant sous-tendre un refus d’amputation chez 224 personnes vivant au Bénin, par l’approche de la théorie du renversement. Les résultats montrent que la peur de la perte de l’identité personnelle, la peur des hôpitaux et du personnel médical, la conviction que la chirurgie était inutile, le manque de confiance dans la compétence et le dévouement des médecins, la peur de la perte de l’estime de l’autre et celle de la perte de la force spirituelle, font partie des facteurs principaux pouvant motiver un refus d’amputation
This thesis focuses on two main themes. The first one is related to sickle cell disease and the second theme is related to limb amputations. For studying the first theme, this research proposes to examine the knowledge of 178 men and women living in Benin, on the disease, its causes, effects and care. They answered a questionnaire and their responses had been compared to those given by an expert group. It had been found that there was an overall lack of awareness on the disease, and especially its most severe symptoms and treatment. The results reveal that the higher level of education they have, the less misconceptions about the disease they have. In addition, this ignorance was increased by people declaring themselves carrying the genetic trait (4.83) or sickle cell (5.19) than those who reported not being carriers (3.72) or healthy (3.62). The second study about the first theme, investigated whether the 137 respondents living in Benin had integrated adequately the rules of inheritance of the disease, based on the functional theory of cognition. Three distinct clusters emerge with data analysis. In the first group (n=46), respondents considered a higher risk of transmission if the one or the other of two parents was/were affected by the disease. In the second group (n=51), the risk was considered even greater as both parents were seriously ill. In the third group (n=40), the risk was considered as high only if both parents were touched. The second theme, Accidents involving physical injury, has motivated a study which aim was to examine the reasons that may underlie a refusal of amputation for 224 people living in Benin, by the approach of the reversal theory. The results show that the fear of losing personal identity, the fear of hospitals and medical staff, the belief that the surgery was unnecessary, a lack of confidence in the competences and dedication of doctors, the fear of losing others esteem and the loss of spiritual strength, are among the main factors motivating a refusal of amputation

Loss of limb through amputation presents a significant, life changing, circumstance for individuals. The prosthetist as the gate keeper to the health-care system and the facilitator of rehabilitation is essential to positive adjustment post-amputation. As yet, however, commonalities and differences in the understandings of each of these parties of the experience of limb loss, prosthesis use and rehabilitation remain unexamined. This comparison provides the focus for this study. Fifteen individuals post amputation and 13 prosthetists were interviewed on their perceptions of limb loss and prosthesis use. Semi structured interviews were conducted, face to face, via telephone or via email. Data were audio-recorded and transcribed as necessary and thereafter analysed using Interpretative Phenomenological Analysis (IPA) in order to gain an understanding of the subjective experiences of individuals with limb loss and of prosthetists of the post-amputation process. Analysis of the data led to identification of four key themes, namely Personal Identity, Social Identity, The Prosthesis and Communication. These themes were relevant for both groups. The meanings that they held for the two groups, however, differed in relation to key elements of the post-amputation experience. Both groups have a shared interest in the process of prosthetic limb fitting and rehabilitation and yet come from very differing perspectives. The fitting and use of a prosthetic device is not a simple, technical process but rather involves a combination of psychological, social and practical components all of which must be recognized in the rehabilitation process. The differing expectations and understandings held by both groups become especially evident in interactions between individuals with limb loss and prosthetists. Communications between members of these groups can provide a central point for addressing differences in their understandings of living with limb loss and might provide a focus for further developments in research and practice.

Adjustment difficulties can be a common problem for people with acquired physical disability. Depression can often be a sign that a person is having difficulties adjusting to and accepting change. One group of people with acquired disability are those who have had a limb amputated due to trauma, cancer, vascular disease or a congenital condition. People who have had an amputation are more likely develop depression than the general population. This study is an investigation into some of the factors (coping strategies, mood, and personality variables) associated with adjustment to amputation. Forty individuals with amputations were asked to complete a set of questionnaires and participate in a short taped interview. Coping strategies were measured using the COPE and personality variables were measured using the Structural Profile Inventory (SPI). Anxiety and depression were measured using the Hospital Anxiety and Depression Scale (HAD). Life satisfaction was measured using the Life Satisfaction Index (A) (LSI). The HAD and LSI were used as indicators of possible adjustment difficulties. Short interviews were also conducted to find out about people's perception of the care that they had received and if these were related to coping strategies. Statistical analysis showed that two coping strategies, positive reinterpretation and growth, and humour, were both associated with higher levels of life satisfaction. Mental disengagement was associated with lower levels of life satisfaction. Personality variables were associated with coping strategies. Two personality variables (Behaviour and Affect) were related to life satisfaction and anxiety. Qualitative analysis of interviews showed that people valued the support of other amputees and wanted services to provide more access to information about the range of artificial limbs available to them. The findings supported the hypothesis that personality is related to the use of particular coping strategies. This could help inform clinical practice, psychological intervention, and physical rehabilitation programmes.

Dissertação de Mestrado em Psicologia Legal
Independentemente da sua gravidade, as deficiências adquiridas alteram o balanço psicodinâmico do sujeito, pois afectam o seu ambiente intrapsíquico, interpessoal, bem como todo o percurso de vida da pessoa. Em contraste com outras doenças físicas, a amputação tem sido menos estudada. O sujeito amputado está muitas vezes ligado a imagens de guerra, devido a aspectos históricos, influentes e decisivos, nomeadamente as graves consequências resultantes da II Guerra Mundial, onde o número de sujeitos com incapacidade adquirida aumentou extraordinariamente. O objectivo do nosso estudo foi avaliar a satisfação e sua relação com a adaptação funcional à prótese em sujeitos com amputações dos membros inferiores, ex-combatentes da Guerra Colonial, e a averiguar a existência de desvantagem social na nossa amostra. Participaram no estudo vinte sujeitos (n=20) com amputação do(s) membro(s) inferior(es). A adaptação à prótese foi avaliada pelo TAPES, instrumento que mede o ajustamento psicossocial, restrição de actividades, e satisfação com a prótese (Parte I), e outros aspectos relacionados com a saúde e capacidades físicas, bem como a experiência de dor no coto e dor fantasma (Farte U). A medida de desvantagem foi-nos fornecida pela utilização do CHART-SF, nos seus diferentes factores: incapacidade física, mobilidade, ocupação, integração social e auto-suficiência económica. Os resultados sugerem correlações com significado estatístico entre: Ajustamento Psicossocial (T) e Ocupação; Satisfação com a Prótese (T) e Mobilidade; Satisfação com a Prótese (T) e Ocupação; Restrição de Actividades (T) e Mobilidade; Ajustamento à Limitação e Independência Funcional; Ajustamento Geral e Mobilidade; Ajustamento Geral e Ocupação; Ajustamento Social e Integração Social; Satisfação Estética e Independência Funcional; Satisfação Estética e Mobilidade; Satisfação com o Peso da Prótese e Independência Funcional; Satisfação Funcional com a Prótese e Mobilidade; Satisfação Funcional com a Prótese e Ocupação; Ajustamento Psicossocial (T) e Satisfação com a Prótese (T); Sugerem ainda correlações negativas com significado estatístico entre Restrições de Actividades (T) e Satisfação com a Prótese (T); entre Restrição de Actividades Funcionais e Integração Social; entre Restrição de Actividades Sociais e Mobilidade; entre Ajustamento Psicossocial (T) e Restrição de Actividades (T). Concluímos com a necessidade de promover uma reabilitação que assente em critérios de natureza fisiológica (indiscutivelmente necessários), mas que valorize também critérios de natureza subjectiva, de forma que se possa considerar a reabilitação como um processo global, em que se possa olhar para o sujeito amputado e valorizar não aquilo que ele perdeu (o membro), mas o que ele ainda pode fazer (as suas capacidades).

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Objetivo: avaliar pessoas com amputações de membros inferiores e descrever as variáveis sociodemográficas e clínicas, além de identificar quais dessas influenciam a qualidade de vida e alterações psíquicas. Métodos: estudo transversal, que incluiu pessoas submetidas a amputações de membros inferiores em todos os níveis e etiologias, sendo excluídas as que apresentaram idade inferior a 14 anos. Foram utilizados os questionários SF-36 e SRQ-20 para avaliar a qualidade de vida e as alterações psíquicas respectivamente em relação a variáveis sociodemográficas e clínicas. Resultados: foram entrevistadas 138 pessoas, com idade média de 62 anos, baixa renda e escolaridade, o SF-36 mostrou que apenas as que não eram casadas apresentaram escores médios de várias dimensões significantemente maiores e a avaliação das condições psíquicas foram influenciadas pelo gênero feminino, não ser casado, não ser independente, tempo de amputação e número de doenças associadas, porém depois da regressão logística, apenas o número de doenças associadas e independência mostraram-se significativas. Conclusões: as alterações na qualidade de vida estiveram associadas à presença de condições mórbidas e ao fato de ter um companheiro; 43% dos pacientes apresentaram doença psíquica, que estiveram associadas com o número de doenças crônicas e o fato de não serem independentes; além disso, foram excluídos do mercado de trabalho, não foram reabilitados.
Objective: To evaluate people with lower limb amputations in community base and describe the demographic and clinical variables, and identify which of these influence the quality of life and psychological disorders. Methods: A cross-sectional study that included people who undergone amputation at all levels and etiologies; were excluded younger than 14 years. Was used the SF-36 and SRQ-20 to assess quality of life and the psychological changes respectively in relation to demographic, social and clinical variables. Results: 138 low income and education people was interviewed; the SF-36 showed that only those who were not married had average scores significantly higher in several dimensions and assessment of psychological conditions were influenced by women, not being married, not independent, time of amputation, and number of associated diseases, but after logistic regression, only the number of associated diseases and independence were significant. Conclusions: changes in quality of life were associated with the presence of morbid conditions and to having a partner, 43% of patients had mental illness that were associated with the number of chronic diseases and that they were not independent and, moreover, ware excluded labor market and ware not being rehabilitated.
TEDE
BV UNIFESP: Teses e dissertações

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior
A amputação é tida como o primeiro procedimento cirúrgico já feito na história da humanidade e repercute de modo diferente nas pessoas que passam por tal procedimento, dependendo do momento histórico e da história de vida de cada uma. A presente pesquisa teve como objetivo compreender a experiência de pessoas que passaram pelo processo de amputação. Na tentativa de compreender a questão norteadora do estudo Como é a experiência de habitar um corpo amputado?, adotou-se o olhar da fenomenologia existencial, ao modo de Heidegger. Participaram da pesquisa seis homens com idade entre 20 e 59 anos, que passaram pelo procedimento cirúrgico para amputação, independente da doença prévia e do fato de já terem utilizado próteses. Como modo de acesso às experiências dos participantes optou-se por narrativas colhidas em Encontros Reflexivos, prática proposta por Heloisa Szymasnski, que se mostrou como possibilidade para troca e elaboração das experiências pelos participantes da pesquisa sobre os diversos modos de habitar um corpo amputado. Também foi utilizado o diário de bordo do pesquisador como registro das impressões, observações e sentimentos ao participar dos Encontros Reflexivos. Como método para análise das narrativas, foi utilizado a Analítica do Sentido de Dulce Critelli, que possibilitou o desvelamento do fenômeno estudado. Os resultados apontaram para a falta de compreensão e despreparo da equipe hospitalar que lida com a cirurgia de amputação no que tange ao cuidado e escuta da pessoa que está passando por tal experiência; revelaram que há um distanciamento das ciências modernas da natureza em questionar o corpo a partir de uma ótica que considere a própria experiência da pessoa que viveu a amputação; revelaram, também, que para os participantes, existir com um corpo amputado é passar por diversas dificuldades, com realce para o modo como experienciam a condição atual e o rompimento com o modo de viver habitual. Nesse sentido, o presente trabalho pretende contribuir para a compreensão da experiência vivida na amputação por parte dos participantes, além de possibilitar reflexões que ajudem nos procedimentos desenvolvidos pela equipe interdisciplinar junto a pessoas que passaram por tal experiência.
Amputation is seen as the first surgical procedure done in human history and resonates differently in people who undergo this procedure, depending on the historical moment and the life story of each. This research aimed to understand the experience of people who underwent the amputation process. In trying to understand the guiding question of the study "How is the experience of inhabiting an amputated body?", was adopted the look of existential phenomenology, to Heidegger mode. The participants were six men aged between 20 and 59 years, who have gone through surgery for amputation, regardless of prior disease and the fact that they have already used prostheses. As a means of access to the experiences of the participants chose to stories collected in "Encounters Reflective" practice proposed by Heloisa Szymasnski, which proved as a possibility for exchange and preparation of participants experiênciaspelos of research on the various ways of inhabiting an amputated body. It was also used the "logbook" of the researcher as a record of impressions, observations and feelings to participate in the "Reflective Encounters". As a method for analysis of the narratives, was used the "Analytic of the Sense" of Dulce Critelli, which allowed the unveiling of the phenomenon studied. The results pointed to the lack of understanding and lack of preparation of the hospital staff that deals with amputation surgery with regard to care and listen to the person who is going through such an experience; was revealed that there is a move away from modern natural science to question the body from a perspective that considers the experience of the person who lived amputation; also revealed that for the participants, exist with an amputated body is going through many difficulties, with emphasis on how experience the current condition and the break with the habitual way of life. In this way, this work aims to contribute to the understanding of the lived experience of amputation by the participants, and enable reflections to help in the procedures developed by the interdisciplinary team together with people who have gone through such an experience.

La douleur chronique est l’un des problèmes les plus complexes auxquels sont confrontées la médecine et les neurosciences. Au fil des siècles, il a été un casse-tête et reste encore un défi pour la recherche étant donné la complexité de sa nature. Parmi la quantité considérable de douleurs chroniques existantes, la douleur du membre fantôme est l’une de plus difficiles à traiter. Les études récentes montrent que les changements corticaux majeurs qui apparaissent après une amputation sont la conséquence de la douleur chronique fantôme. Je soutiens que la cause principale de la douleur fantôme est la non-acceptation de la perte d’une partie du corps, autrement dit, que la douleur mentale provoquée par la transformation de l’image de soi devient une douleur chronique physique, et que c’est l’esprit qui contrôle les réseaux cérébraux : bien qu’il émerge du cerveau, l’esprit arrive à le modifier du fait d’influences exogènes. L’analyse des études que j’ai réalisée pour tester mon hypothèse, m’a permis de constater que la perception douloureuse dépend de diverses influences externes qui sont indépendantes de l'entrée (signal) nociceptive. Je conclus que la plasticité corticale mise en évidence lors de l'expérience douloureuse chronique ne dépend pas seulement de l'action et de l'interaction entre les réseaux neuronaux dynamiques, mais aussi de la communication entre ces réseaux neuronaux (système endogène) et les réseaux environnementaux (système exogène), ces derniers étant capables de moduler la perception de la douleur. Je souligne donc l’importance de la reconnaissance du caractère mental de la douleur chronique et le besoin d’analyser sa dimension émotionnelle afin de la moduler
Chronic pain is one of the most complex problems facing medicine and neuroscience. Over the centuries, it has been a puzzle and remains a research challenge given the complexity of its nature. Among the large number of existing different kinds of chronic pain, phantom limb pain is one of the most difficult to treat. Recent studies show that major cortical changes that appear after amputation are the result of chronic phantom limb pain. I argue that the main cause of phantom limb pain is the non-acceptance of the loss of a part of the body, that is to say, that the mental pain caused by the transformation of the self-image becomes a chronic physical pain. It is the mind that controls the cérébral networks : even if it emerges from the brain, the mind manages to modify it as a consequence of external influences. The analysis of the studies I performed to test my hypothesis, allowed me to confirm that the perception of pain depends on various external influences that are independent of the nociceptive signals. I conclude that the cortical plasticity highlighted during chronic painful experience does not only depend on the action and interaction between dynamic neural networks, but also on the communication between these neural networks (endogenous system) and environmental networks (exogenous system). These latter networks are capable of modulating the perception of pain. I therefore emphasize the importance of recognizing the mental nature of chronic pain and the need to analyze the emotional dimensions which modulate it

Dissertação apresentado ao ISPA-Instituto Universitário para obtenção do grau de Doutor em Psicologia Aplicada: Especialidade Psicologia da Clinica
Background: The experience of becoming physically impaired, especially in lower limb adult amputees and in working-aged patients with vision loss, has deserved little attention by research in general. The weight of some variables associated with these experiences on depressive levels has been stressed by some studies. However, little is known about it. Aims: The current dissertation aimed at filing in the knowledge gap regarding these topics. We intended to explore the experience of acquired physical impairment, focusing on changes in self-identity, in two groups: working-aged adults with vision loss; and adults who suffered a lower limb amputation. In addition, we aimed at exploring a possible connection between the most relevant emerged variables of these experiences and the depressive levels: the self-awareness of impairment; and the selfidentifications with the impairment. Method: Two independent studies were performed, both was cross-sectional and using mixed-methods: study 1 was on the experiences of vision loss of 38 patients at rehabilitation setting (mean age of 42.7; SD=14.5); and study 2 was on the experiences of lower limb amputation in 42 patients (mean age of 61; SD=13.5) followed-up at a general hospital‟s rehabilitation medicine unit. Qualitative data on the experiences of impairment was collected by two semi-structured interviews for each patient. The interviews were performed by an independent and trained psychologist, under the supervision of a senior psychologist and psychotherapist. 80 interviews were conducted in study 1 and 84 interviews in study 2. Depressive levels were assessed using CES-D. The content analysis was performed using the Categorical and Coding analysis proposed by Bardin. Results: Qualitative data from the study 1, on the experiences of vision loss, retrieved seven themes, most of them focused on changes in self-identity. These results supported a new model for the adjustment process to vision loss, based on patients‟ self-awareness of impairment and self-identifications with the impairment. 39.5% (n=15) of patients met CES-D criteria for depression. Higher depressive levels (P<.05) were found in patients who: lost vision for longer; begun their rehabilitation later; were more aware of their impairment; and those who reported an inadequate social support (P<.01). A positive correlation was found between CES-D scores and vision loss evolution (.333; P=.036), and between CES-D scores and rehabilitation time (.335; P=.035). In study 2, eight themes emerged from the interviews. Qualitative results supported a theoretical model for the changes in self-identity related to lower limb loss beyond the body image. 31% (n=13) met CES-D criteria for Depression. Higher depressive levels (p<.05) were found in those who showed: greater self-awareness of impairment; lower identification with the impairment; and worse appraisals towards the prosthesis, social support and well-being. Conclusions: In both studies the changes in self-identity, especially in terms of selfawareness of impairment and self-identifications with the impairment, arose as core milestones of the adjustment process to the impairment. The relationship found between the variables related to the experience of impairment and depressive levels suggests two conclusions: the changes in self-identity caused by the impairment might be one of the important causes for the rising of depressive levels; the increase in depressive levels in these populations might be, at first, the reflex of the adjustment process to the many personal losses and therefore, do not necessarily reveal a bad adaptation to the impairment nor a mental health problem. ---------- RESUMO ----------Enquadramento: A experiência de amputação de membro inferior em adultos, e a experiência de perda irreversível de visão em adultos não idosos, são dois temas que têm tido pouca atenção por parte da investigação científica. O peso desta experiência ao nível da identidade dos sujeitos e a relação dessas variáveis com os níveis de depressividade são temas considerados relevantes, embora ainda pouco estudados. Objectivos: A presente dissertação veio no propósito de produzir alguma evidência acerca dos tópicos referidos. Com estes estudos pretendemos explorar as experiências incapacidade física adquirida e as suas implicações para a identidade dos sujeitos em dois grupos de sujeitos: adultos que tenham sofrido amputação de membro inferior; e adultos não idosos com perda irreversível e severa de visão. Outro dos objectivos destes estudos foi a investigação preliminar de potenciais relações entre variáveis como a autoconsciência de incapacidade e as auto-identificações com a incapacidade e os níveis de depressividade. Método: Para atingir os objectivos do nosso estudo, delineamos duas investigações independentes. Estudo 1: 38 sujeitos com perda irreversível de visão (média de idades de 42.7 anos; desvio padrão de 14.5), todos eles em fase de reabilitação. Estudo 2: 42 sujeitos amputados (média de idades de 61; desvio padrão de 15.6), todos eles em seguimento na consulta de medicina física e de reabilitação num hospital geral. Em ambos os estudos as experiências de incapacidade foram recolhidas através de uma metodologia qualitativa, com recurso a entrevistas semi-estruturadas realizadas individualmente a cada sujeito. Cada entrevista foi realizada por um investigador independente, formado em Psicologia e com experiencia clínica com este tipo de populações. As entrevistas foram supervisionadas por um Psicólogo e Psicoterapeuta Sénior. Os níveis de depressividade foram avaliados usando o CES-D. A análise do conteúdo das entrevistas foi realizada com base no método de codificação categorial não indutivo de Bardin. Resultados: Os resultados qualitativos do estudo 1 (perda de visão) revelaram sete temas, a maior parte dos quais acerca das alterações ao nível da própria identidade. Esses resultados suportaram um modelo compreensivo para o processo de ajustamento à perda de visão, com base na auto-consciência de incapacidade e nas auto-identificações à incapacidade dos sujeitos estudados. As pontuações no CES-D de 39.5% (n=15) dos sujeitos cumpriram os critérios para depressão clínica. Maiores níveis de depressão (P<.05) foram encontrados nos sujeitos que: tinham perdido a visão há mais tempo; começaram a reabilitação mais tardiamente; estavam mais conscientes a sua incapacidade; e percepcionaram um pior suporte social (P<.01). Foi encontrada uma correlação positiva entre as pontuações dos sujeitos no CES-D e duas variáveis: o tempo decorrido entre o primeiro diagnóstico da doença responsável pela perda de visão e o momento em que o sujeito ficou clinicamente com baixa visão ou cego (.333; P=.036); o tempo de reabilitação (.355; P=.035). No estudo 2 emergiram oito temas sobre a experiência de amputação. Esses resultados suportaram também um modelo teórico compreensivo para as alterações na identidade dos sujeitos, decorrentes da situação de amputação. 31% (n=13) dos sujeitos apresentaram pontuações no CES-D que cumpriram os critérios para depressão clínica. Maiores níveis de depressão (P<.05) foram encontrados nos sujeitos que apresentaram: maior auto-consciência de incapacidade; menor identificação à incapacidade; pior relação com a prótese; pior percepção do suporte social; e pior percepção do bem-estar. xii Conclusões: Nos dois estudos a auto-consciência de incapacidade e as autoidentificações com a incapacidade surgiram como duas variáveis chave do processo de ajustamento à incapacidade, demonstrando o potencial efeito transformador destas situações de incapacidade para identidade dos sujeitos. A associação encontrada entre as variáveis relativas à experiência de incapacidade e os níveis de depressividade parece sugerir duas conclusões: as alterações na identidade decorrentes da situação de incapacidade física adquirida poderão ser uma das importantes causas do aumento dos níveis de depressividade; o aumento dos níveis de depressividade poderão ser, num primeiro momento, reflexo do processo de ajustamento às perdas sofridas e não traduzir, necessariamente, uma má adaptação à situação de incapacidade, nem um problema de saúde mental.
Programa Operacional de Potencial Humano, QREN Portugal, 2007-2013

Adjustment to disability is a foundational concept within rehabilitation psychology and constitutes an important public health problem given the adverse outcomes associated with maladjustment. While the disability literature has highlighted depressive elevations in response to functional impairment, resilience and alternative patterns of psychological adjustment have received substantially less empirical inquiry. This dissertation is comprised of three papers, the first two of which are longitudinal studies utilizing distinct samples of individuals with acquired disabilities: a population-sample of physically impaired older adults, and a convenience sample of individuals with newly acquired amputations. The third paper summarizes current data science and statistical findings regarding disability adjustment for patients and their providers. The two longitudinal studies share a common statistical methodology, latent growth mixture modeling (LGMM), allowing for the identification of distinct subgroups (classes) of individuals who share similar symptom profiles over time. LGMM is well-poised to resolve fundamental questions about whether psychological functioning after disability is best described by a population-level archetypal response (i.e., distress and depression that remits over time), or alternatively, whether the data suggest a variety of definable subgroups with distinct psychological trajectories. Results of empirical papers 1 and 2 provide strong empirical evidence that the process of disability adjustment is heterogeneous, with multiple pathways of symptom development and remission. The third paper demonstrates how findings from current rehabilitation science can be utilized to inform psychoeducational materials for practitioners and their patients with recent limb loss. This chapter addresses gaps in dissemination of knowledge by describing various patterns of psychological outcomes encountered by individuals following amputation surgery, as supported by Study 2 and the broader resilience literature.

O objectivo deste estudo foi identificar as estruturas e os constituintes das experiências mais significativas relacionadas com a amputação de um ou mais membros, e compreender as suas dinâmicas. Por experiências entendemos o conjunto das vivências antepredicativas e predicativas. Entendemos a experiência tal como Husserl refere, constituídas pelas vivências explícitas e implícitas aos actos de consciência. Este trabalho foi iniciado com algumas inquietações acerca do papel da psicologia no estudo da experiência e acompanhado por preocupações epistemológicas. Na revisão de literatura foram abordados diferentes modelos teóricos sobre a experiência da amputação. Como procedimento metodológico foram realizadas entrevistas individuais, onde quatro participantes descreveram as suas experiências mais significativas relacionadas com a amputação sofrida. Estas descrições foram depois analisadas de acordo com o método fenomenológico-psicológico desenvolvido por Amedeo Giorgi. Nestes resultados pudemos identificar três estruturas gerais (ou tipos de experiências) e treze constituintes-chave inerentes à experiência de amputação, são eles: Ruptura ou perda irreversível; Mudança nas relações com outros; Confronto e impacto inicial; Suporte recebido em contexto hospitalar; Alterações da consciência; Vivência temporal; Antagonismo psicológico; Questionamento da identidade, Complicações de saúde cumulativas; Descontentamento, frustração e incapacidade para agir; Mudanças nos sentidos para a vida; Solidão existencial; e Incerteza e expectativa. Por fim, verificámos que existem correspondências entre os resultados deste estudo e as perspectivas fenomenológicas de Husserl e dos autores existencialistas abordados, por isso, pudemos apontar também para algumas implicações práticas do método fenomenológico ao contexto de investigação e da psicoterapia, nomeadamente no âmbito da ajuda na amputação, uma vez que nesta área foi evidente a reivindicação de uma abordagem reconciliadora que devolva congruência às experiências relacionadas com mudanças antagónicas, separações, ou rupturas.
ABSTRACT: The aim of this study was identify the structures and constituents of the most significant experiences related with limb amputation and try to understand it´s dynamics. By experiences we mean the sum of the pre-nominal and nominal lived experiences. We conceived the notion of experience as Husserl describes it, explicit and implicit lived experiences in conscious acts. This work was initiated with some issues about the role of psychology in the study of the experience and accompanied by epistemological concerns. Different theoretical models about the amputation experience were approach in the literature review. As methodological procedures there were realized individual interviews with four participants that described his/her most significant experiences related with the suffered amputation. After, those descriptions were analyzed accorded with the phenomenological-psychological method developed by Amedeo Giorgi. In the results we have identified three general structures (or “types” of experiences) and thirteen key-constituents of the amputation experience, namely: Rupture or irreversible loss; Change in relationships with others; Confrontation and the initial impact; Support received in the hospital; Changes in the state of conscience; The experience of time; Psychological antagonism; Questioning of identity; Cumulative health complications; Dissatisfaction, frustration and inability to act; Changes in directions and sense for life; Existential loneliness; and Uncertainty and expectation. We had concluded that there are correspondences between our results and Husserl´s phenomenological perspectives and the existentialist authors discussed in the literature review, we could also point some practical implications about the phenomenological method in research and psychotherapy, particularly in the context of aid in the amputation since in this area was evident the need for a reconcilable approach able to restore consistency in experiences related to antagonistic changes, separations, and breaks (psychological and other kind of “lived breaks”).