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Abstract(s)
Os pais que acompanham os filhos com doença crónica complexa até à sua morte experienciam uma situação singular, com vulnerabilidades e vivida de forma individual, com necessidades específicas e enorme sofrimento. Este estudo teve como objetivo compreender a experiência vivida de pais que acompanharam os seus filhos com doença crónica complexa até à sua morte, num contexto de cuidados paliativos pediátricos, procurando responder à questão de investigação "Qual a experiência vivida de pais que acompanharam os filhos com doença crónica complexa até á sua morte, num contexto de cuidados paliativos pediátricos?" Optou-se por uma metodologia qualitativa, numa perspetiva fenomenológica descritiva em que os participantes foram selecionados de forma intencional, com o apoio de uma equipa intra-hospitalar de cuidados paliativos pediátricos, tendo em conta os critérios de inclusão e exclusão previamente estabelecidos. Foram realizadas entrevistas fenomenológicas, para colheita de dados. O processo de análise dos dados foi conduzido através das etapas processuais do método de van Kaam modificado por Moustakas que permitiu desocultar e descrever o fenómeno em estudo. A compreensão da estrutura essencial do fenómeno revela-se numa descrição composta que envolve três temas essenciais: "Enfrentando o prenúncio da doença"; "(Com)Vivendo com um filho doente" e "Recomeçando sem nunca esquecer: viver com um filho ausente". Através do presente estudo, os enfermeiros poderão aceder à experiência vivida destas mães, podendo melhorar a sua intervenção ao longo do processo de doença dos filhos, assim como no seu processo de luto. Dos dados resultam contributos para a prática clínica, investigação e ensino dos cuidados paliativos na área da Saúde Infantil e Pediátrica.
Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities and lived individually, with specific needs and enormous suffering. The aim of this study was to understand the lived experience of parents who accompanied their children with a complex chronic illness until their death in a paediatric palliative care setting, in an attempt to answer the research question ‘What is the lived experience of parents who accompanied their children with a complex chronic illness until their death in a paediatric palliative care setting?’. We opted for a qualitative methodology, from a descriptive phenomenological perspective, in which the participants were selected intentionally, with the support of an in-hospital paediatric palliative care team, taking into account the previously established inclusion and exclusion criteria. Phenomenological interviews were carried out to collect data. The process of analysing the data was carried out using the procedural stages of the van Kaam method modified by Moustakas, which made it possible to uncover and describe the phenomenon under study. The process of analysing the data was carried out using the procedural stages of the van Kaam method modified by Moustakas, which made it possible to uncover and describe the phenomenon under study. An understanding of the essential structure of the phenomenon is revealed in a composite description involving three essential themes: ‘Facing the harbinger of illness’; ‘Living (together) with a sick child’; and ‘Starting again without ever forgetting: living with an absent child’. Through this study, nurses will be able to access the lived experience of these mothers and improve their intervention throughout the process of their child's illness, as well as in their bereavement process. The data will contribute to clinical practice, research and the teaching of palliative care in the area of child and paediatric health.
Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities and lived individually, with specific needs and enormous suffering. The aim of this study was to understand the lived experience of parents who accompanied their children with a complex chronic illness until their death in a paediatric palliative care setting, in an attempt to answer the research question ‘What is the lived experience of parents who accompanied their children with a complex chronic illness until their death in a paediatric palliative care setting?’. We opted for a qualitative methodology, from a descriptive phenomenological perspective, in which the participants were selected intentionally, with the support of an in-hospital paediatric palliative care team, taking into account the previously established inclusion and exclusion criteria. Phenomenological interviews were carried out to collect data. The process of analysing the data was carried out using the procedural stages of the van Kaam method modified by Moustakas, which made it possible to uncover and describe the phenomenon under study. The process of analysing the data was carried out using the procedural stages of the van Kaam method modified by Moustakas, which made it possible to uncover and describe the phenomenon under study. An understanding of the essential structure of the phenomenon is revealed in a composite description involving three essential themes: ‘Facing the harbinger of illness’; ‘Living (together) with a sick child’; and ‘Starting again without ever forgetting: living with an absent child’. Through this study, nurses will be able to access the lived experience of these mothers and improve their intervention throughout the process of their child's illness, as well as in their bereavement process. The data will contribute to clinical practice, research and the teaching of palliative care in the area of child and paediatric health.
Description
Keywords
Pais Crianças Cuidados Paliativos Fenomenologia Enfermagem Parents Children Palliative Care Phenomenology Nursing