O Idoso Prestador Informal de Cuidados:
Estudo sobre a experiência masculina do cuidar
Oscar Manuel Soares Ribeiro
Dissertação de Doutoramento em Ciências Biomédicas
Oscar Manuel Soares Ribeiro
O Idoso Prestador Informal de Cuidados:
Estudo sobre a experiência masculina do cuidar
Dissertação de Candidatura ao grau de Doutor em Ciências Biomédicas submetida ao Instituto de Ciências Biomédicas de Abel Salazar da Universidade do Porto.
Orientador - Doutora Maria Constança Leite de Freitas Paúl Reis Torgal, Professora Catedrática do Instituto de Ciências Biomédicas de Abel Salazar da Universidade do Porto.
Co-orientador - Doutora Maria Conceição Oliveira Carvalho Nogueira, Professora Auxiliar do Instituto de Educação e Psicologia da Universidade do Minho.
Júri
Presidente do Conselho Directivo do Instituto de Ciências Biomédicas de Abel Salazar da Universidade do Porto (por delegação reitoral).
Doutora Kate Davidson, Senior Lecturer of the Depart. of Sociology, University of Surrey, UK. President of the British Society of Gerontology. Doutora Margarida Maria Batista Mendes Pedroso de Lima, Professora Associada da Faculdade de Psicologia e de Ciências da Educação da Universidade de Coimbra.
Doutora Maria Conceição O. Carvalho Nogueira, Professora Auxiliar do Instituto de Educação e Psicologia da Universidade do Minho.
Doutora Maria Constança Leite de Freitas Paúl Reis Torgal, Professora Catedrática do Instituto de Ciências Biomédicas Abel Salazar da Universidade do Porto.
Doutor Júlio G. Ferreira Machado Vaz, Professor Auxiliar do Instituto de Ciências Biomédicas Abel Salazar da Universidade do Porto.
Doutora Paula Maria Figueiredo Pinto de Freitas, Professora Auxiliar do Instituto de Ciências Biomédicas Abel Salazar, Universidade do Porto.
A elaboração da presente dissertação foi apoiada pela Fundação para a Ciência e a Tecnologia (FCT), através de uma Bolsa de Doutoramento com a referência SFRH/BD/8812/2002.
Agradecimentos
Às várias pessoas e instituições que tornaram este projecto possível, nomeadamente aos homens idosos que conheci, cujas vivências perscrutei, e a quem se deve, na sua essência, esta dissertação.
Às minhas orientadoras, Prof. Dra. Constança Paúl e Prof. Dra. Conceição Nogueira, com quem partilho inestimáveis laços de amizade e admiração: pela clareza de posicionamentos teóricos e empíricos, pela probidade científica, pela disponibilidade pessoal e profissional, pelo desafio constante e por me darem múltiplos incentivos de há alguns uns anos a esta parte.
Ao Prof. Dr. Ignacio Martín e ao Prof. Dr. António Fonseca, que me desafiaram e desafiam continuamente no universo académico e dos quais retiro modelos, diferentes e complementares, de actuação profissional.
A toda a equipa de profissionais do Serviço de Psicogeriatria do Hospital Magalhães Lemos, com quem tive o grande prazer e privilégio de trabalhar antes e durante parte deste projecto e que me ensinaram, com amizade, bastante do que hoje sei sobre Psicogeriatria. Um obrigado particular à Dra. Filomena Santos, à Dra. Teresa Alves, à Enf. Margarida Sotto Mayor, ao Dr. João Freitas, à Dra. Margarida Sobral, à Dra. Teresa Salgado, à Dra. Sara Mariano, à Enf. Isabel Varandas, ao Dr. Leuschner e à sempre atenciosa Mafalda.
Às pessoas que preenche(ra)m a minha vida. À Ana, pela presença do seu viver num primeiro momento da tese. À Mafalda, pela partilha de vários momentos decisivos deste percurso. À Sara Melo, preciosa amiga e colega, a quem uma grande parte das discussões e problematizações desta tese se devem. À Vânia, pelos fortes laços que nos unem e pela sua presença constante. Aos amigos que comigo partilharam momentos decisivos nas várias fases deste percurso: Ilda, Marlene, Liliana, António, Diogo, Sara Sousa, Ricardo, Rita, Ana, Zé Nuno, Patrícia, Pedro, Marianela e Isabel. Àqueles outros, amigos e colegas, que, fazendo parte da minha biografia, deram o seu contributo (in)directo.
Resumo
O Idoso Prestador Informal de Cuidados: estudo sobre a experiência masculina do cuidar
Centrando-se numa intersecção entre a Gerontologia e os Estudos de Género, a presente dissertação tem como finalidade central o estudo da experiência masculina do cuidar. A investigação que nela consta tomou essa experiência como objecto de análise e, debruçando-se primordialmente sobre as dimensões psicológicas que a ela estão subjacentes, parte de uma interrogação genérica acerca do significado, desafios psicossociais e repercussões desta experiência não normativa (porque tradicionalmente associada ao universo feminino) num grupo específico de homens idosos, maridos, presentemente cuidadores das suas cônjuges dependentes. Assumindo a prestação informal de cuidados como uma temática não só pouco estudada na perspectiva do homem idoso, como pouco centrada nas questões de masculinidade, a presente dissertação mais do que reflectir sobre a experiência do cuidar nos cânones mais convencionais, procura fazê-lo numa perspectiva de género, enfatizando, assim, a construção social da(s) masculinidade(s) naquele papel específico e destacar, adicionalmente, a importância de introduzir nos discursos contemporâneos sobre o homem idoso as conceptualizações sobre o género performativo. Ao considerar estes objectivos, procura, na sua parte teórica, expor uma reflexão acerca das várias dimensões intrínsecas à prestação informal de cuidados e ao binómio masculinidade(s)-envelhecimento(s), e apresentar uma revisão exaustiva da literatura acerca da prestação informal de cuidados por homens idosos a adultos e/ou idosos dependentes. No seu contributo empírico, apresenta um estudo qualitativo, ajustado a uma temática emergente no contexto português, realizado com 53 maridos idosos, cuidadores das suas esposas com doenças crónicas (27 com demência e 26 com dependência funcional). Baseando-se nas suas descrições acerca da experiência (transição, dificuldades, processos adaptativos, integração do papel nas suas vidas, repercussões e questões de género), os principais resultados revelaram, além de uma similitude global da experiência nos dois subgrupos considerados e da presença de um profundo envolvimento com as responsabilidades do cuidar motivado por valores pessoais e votos maritais, a centralidade quer do constructo “significado” para a compreensão e integração da experiência nesta etapa de vida, quer dos esforços pessoais para tornar flexível, elástica, e ajustada, mas presente, uma noção tradicional de masculinidade desprovida de guiões de actuação explícitos àquele período das suas vidas e às suas circunstâncias (idoso, homem, cuidador). Do esforço de síntese teórica e do contributo empírico apresentados, emanam várias reflexões e implicações para a investigação e para a prática, nomeadamente no que se refere à necessidade de novas apreciações acerca das capacidades dos maridos idosos para cuidar (e de envelhecer, enquanto homens, naquele papel), e à necessidade de desenvolver uma apreciação fundamentada do homem idoso enquanto prestador informal de cuidados: das suas potencialidades para fazê-lo, das suas motivações e envolvimento deliberado, dos impactos psicossociais e de saúde, e do aporte de várias contribuições positivas da experiência (privada e pública) às suas vidas.
Abstract
Older men as informal carers: a study on the masculine experience
Positioned in a field that expresses a confluence between Gerontology and Gender Studies, the present doctoral thesis has the main purpose of studying the masculine caregiving experience. The research project on which it is based mostly considers the psychological dimensions inherent to that experience and focuses on the meaning, psychosocial challenges and consequences of such a non
normative role (as intrinsically associated to a feminine figure) in a particular group of elderly men
who are the primary carers of their ill spouses. As a specific subgroup, there is still a lack of research that focuses on elderly men’s experience as carers, and more specifically on the importance of issues related to late-life masculinity within that role. Therefore, the present thesis dissertation aims to provide a reflection on the caregiving experience when assumed by elderly men within a gender perspective that emphasizes the social construction of masculinities in that particular role; furthermore, it aims to highlight the importance of bringing gender related issues, namely gender as a performance, to the contemporary scientific discourses upon older men. Considering these main goals, several dimensions that configure informal caregiving, as well as several issues related to late-life masculinities are subject to a theoretical revision. An exhaustive literature review on older men as primary informal carers is also presented. The empirical part describes a qualitative study which considers the experience of 53 Portuguese husbands aged 65 and over who are caring for their spouses suffering from chronic diseases (27 with dementia and 26 with physical impairment). Based on descriptions of their current caregiving situations (transition to the role, difficulties, adaptation, consequences and gender issues), main findings revealed a global resemble of the caregiving experience for both subgroups considered, and that these men were highly committed with a broad scope of caregiving responsibilities, which were mostly anchored in their wish to sustain a meaningful relationship through the fulfilment of marital vows and altruistic values. The “meaning” construct, as a dimension that expresses the making sense, order or coherence out of an experience within one’s existence, was found to be fundamental in understanding the older husband’s experience of caring at that specific point of their lives. Findings also revealed the presence of several negotiations with the dominant masculine ideology in order to maintain a sense of masculinity and legitimate their presence in a role that, being unexpected, is continuously referred to as feminine. This was accomplished mostly through several efforts in redefining their sense of masculinity, making it more flexible, elastic and inclusive. From both the theoretical review and the empirical study, several implications for service provision and future research are derived, namely those regarding the need for new appreciations of the older husband's capacities for care and aging within such role. The author emphasises the need for having a sustained view of older men as competent, involved and motivated caregivers, that though having several intense psychosocial and health burdens, also derive important positive aspects to their lives from their caregiving circumstances (private and public).
Résumé
L’Homme Agée Donneur de Soins: étude sur l'expérience masculine de soigner
En se centrant dans une interface entre la Gérontologie et les Études de Genre, la présente dissertation a comme finalité centrale l'étude de l'expérience masculine de soigner. La recherche dont les résultats y sont synthétisés a pris cette expérience comme objet d'analyse et, se penchant primordialement sur les dimensions psychologiques à elle sous-jacentes, part d'une interrogation générique sur la signification, défis psychosociaux et répercussions de cette expérience non
normative (vu qu’elle est traditionnellement associée à l'univers féminin) pour un groupe spécifique
d'hommes âgés, de maris, actuellement en train de soigner leurs conjointes dépendantes. En assumant la prestation de soins par des hommes âgés comme une thématique non seulement peu étudiée comme peu centrée sur les questions de masculinité, la présente dissertation plus que réfléchir sur l'expérience de soigner dans les canons plus classiques, a cherché à le faire dans une perspective de genre, soulignant, ainsi, la construction sociale des masculinités dans ce rôle spécifique et, d'autre part, elle a cherché à détacher l'importance d'introduire dans les discours contemporains sur l'homme âgé les conceptualisations sur le genre “performative”. En considérant ces objectifs, cette dissertation cherche à exposer une réflexion sur les plusieurs dimensions inhérentes à la prestation non officielle de soins aussi bien qu’au binôme masculinité(s) – vieillissement(s) et à présenter une révision exhaustive de la littérature concernant la prestation de soins par des hommes à adultes et/ou à personnes âgées dépendantes. Dans sa contribution empirique, elle présente une étude qualitative, ajustée à une thématique émergente dans le contexte portugais, réalisée avec 53 maris âgés en train de soigner leurs femmes qui ont des maladies chroniques (27 avec démence et 26 sans démence). En se basant sur leurs descriptions concernant l'expérience (transition, difficultés, processus adaptatifs, intégration du rôle dans leurs vies, répercussions et questions de genre), les principaux résultats ont révélé, outre une similitude globale de l'expérience dans les deux sous-groupes considérés et la présence d'un profond engagement avec les responsabilités du soin motivé par des valeurs personnelles et des votes maritaux, la centralité soit de la "signification" pour la compréhension et l'intégration de l'expérience dans cette étape de la vie, soit des efforts personnels pour rendre flexible, élastique, et ajusté une notion traditionnelle de masculinité dépourvue de guides d'action explicites pour cette période de leurs vies et pour leurs circonstances (personne âgée, homme, donneur de soins). De l'effort de synthèse théorique et de la contribution empirique présentés, émanent plusieurs réflexions et implications pour la recherche et pour la pratique, notamment en ce qui concerne la nécessité de nouvelles appréciations concernant les capacités des maris âgés pour soigner (et de vieillir, tant qu'hommes, dans ce rôle), et à la nécessité de développer une appréciation fondée de l'homme âgé comme donneur de soins: de ses potentialités pour le faire, de ses motivations et engagement délibéré, des impacts psychosociaux et de santé et de l'apport de plusieurs contributions positives de l'expérience (publique et privée) à sa vie.
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