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Acompanhamento do adulto jovem em fim de vida : experiência vivida do cônjuge
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Este estudo procurou responder à questão de investigação “Qual a experiência vivida do acompanhamento do cônjuge do adulto jovem em fim de vida?”. Teve como objetivo compreender a experiência vivida do acompanhamento do cônjuge do adulto jovem em fim de vida. Para o efeito enveredou-se por uma metodologia qualitativa, de desenho fenomenológico-hermenêutico, orientado pelas premissas conceptuais de Heidegger e Gadamer.
Com o apoio da equipa de cuidados paliativos da instituição onde decorreu a colheita de dados (Instituição hospitalar especializada em oncologia da região centro-sul do país), selecionaram-se potenciais participantes (amostragem intencional). Posteriormente chegou-se aos participantes deste estudo, 7 cônjuges de adultos jovens em fim de vida, a quem se realizou entrevistas fenomenológicas, cujas narrativas foram analisadas segundo a perspetiva Gadameriana, orientada por Fleming, Gaidys & Robb (2003) e Smythe (2019).
O fenómeno acompanhamento do adulto jovem em fim de vida desvelou-se ao longo de oito temas comuns aos participantes: “Acompanhar como compromisso humano”, “Antecipar a perda”, “Estabelecer limites”, “Navegar sob a sombra da morte pelos serviços de saúde”, “Afastar a sombra da morte infundindo vida”, “Estar com”, “Encetar passo a passo o caminho desconhecido, procurando reerguer-se e coconstruir-se”, “A subjetividade e paradoxalidade do tempo vivido”.
Esta experiência vivida revela-se, para estes cônjuges, como a mais desafiadora, até ao momento, dado se confrontarem inopinadamente com a ameaça de morte extemporânea numa fase de vida em que o futuro assumia preponderância. Perante a ameaça emerge o compromisso para com o outro, que os impele a estar e ser presentes, demonstrando-se diligentes no cuidado e proteção do companheiro, procurando não somente proporcionar mais tempo de vida, mas também uma vida com sentido. Não obstante, esta é uma experiência buliçosa, pautada por múltiplas perdas, geradora de sofrimento que deixa marcas na existência do cônjuge que se manifestavam até momento das entrevistas e condicionavam o modo como perspetivava o presente e o futuro.
Este estudo deu voz a estes cônjuges e tornou visível a singularidade da experiência humana de acompanhamento. Esta experiência vivida desvela necessidades e especificidades singulares que podem constituir-se como fonte de conhecimento para profissionais de saúde e especialmente para os enfermeiros que nele encontrem sentido.
This study aimed to answer the research question "What is the lived experience of accompaniment of the young adult's spouse at the end of life?" It aimed to understand the lived experience of accompanying the young adult's spouse at the end of life. To this end, a qualitative methodology of phenomenological hermeneutic design was used, guided by the conceptual premises of Heidegger and Gadamer. With the support of the palliative care team of the institution where data were collected (a hospital institution specialised in oncology in the centre-south region of the country), potential participants were selected (purposive sample). Subsequently, we reached the participants of this study, 7 spouses of young adults at the end of life, to whom phenomenological interviews were conducted, whose narratives were analysed according to the Gadamerian perspective, guided by Fleming, Gaidys & Robb (2003) and Smythe (2019). The phenomenon of accompanying the young adult at the end of life was unveiled along eight themes common to the participants: "Accompanying as a human commitment", "Anticipating the loss", "Setting boundaries", "Navigating under the shadow of death by health services", "Driving away the shadow of death by infusing life", "Being with", "Embarking step by step on the unknown path searching to re-emerge and co-construct oneself"; "The subjectivity and paradoxical of lived time". This lived experience proved to be the most challenging for these spouses, until the moment, as they were suddenly faced with the threat of extemporaneous death in a phase of life in which the future took on predominance. Faced with the threat, a commitment to the other emerges, which urges them to be present, showing diligence in caring for and protecting their partner, seeking not only to provide more time to live, but also a meaningful life. Nevertheless, this is a turbulent experience, marked by multiple losses, generating suffering that leaves marks in the spouse's existence that were manifested until the interviews and conditioned the way in which they envisioned the present and the future. This study gave voice to these spouses and made visible the uniqueness of the human experience of accompaniment. This lived experience reveals unique needs and specificities that may become a source of knowledge for health professionals and especially for nurses who find meaning in it.
This study aimed to answer the research question "What is the lived experience of accompaniment of the young adult's spouse at the end of life?" It aimed to understand the lived experience of accompanying the young adult's spouse at the end of life. To this end, a qualitative methodology of phenomenological hermeneutic design was used, guided by the conceptual premises of Heidegger and Gadamer. With the support of the palliative care team of the institution where data were collected (a hospital institution specialised in oncology in the centre-south region of the country), potential participants were selected (purposive sample). Subsequently, we reached the participants of this study, 7 spouses of young adults at the end of life, to whom phenomenological interviews were conducted, whose narratives were analysed according to the Gadamerian perspective, guided by Fleming, Gaidys & Robb (2003) and Smythe (2019). The phenomenon of accompanying the young adult at the end of life was unveiled along eight themes common to the participants: "Accompanying as a human commitment", "Anticipating the loss", "Setting boundaries", "Navigating under the shadow of death by health services", "Driving away the shadow of death by infusing life", "Being with", "Embarking step by step on the unknown path searching to re-emerge and co-construct oneself"; "The subjectivity and paradoxical of lived time". This lived experience proved to be the most challenging for these spouses, until the moment, as they were suddenly faced with the threat of extemporaneous death in a phase of life in which the future took on predominance. Faced with the threat, a commitment to the other emerges, which urges them to be present, showing diligence in caring for and protecting their partner, seeking not only to provide more time to live, but also a meaningful life. Nevertheless, this is a turbulent experience, marked by multiple losses, generating suffering that leaves marks in the spouse's existence that were manifested until the interviews and conditioned the way in which they envisioned the present and the future. This study gave voice to these spouses and made visible the uniqueness of the human experience of accompaniment. This lived experience reveals unique needs and specificities that may become a source of knowledge for health professionals and especially for nurses who find meaning in it.
Descrição
Palavras-chave
Experiência Vivida Acompanhamento Cônjuge Adulto Jovem Fim de Vida Enfermagem Fenomenologia-hermenêutica Lived Experience Accompaniment Spouse Young Adult End of Life Nursing Phenomenology-Hermeneutics