RESUMO
Introduction: The objective of this paper was to describe the vision of death from the perspective of families of children who experienced palliative care, and team members working in one unit, and to explore the roles of healthcare clowns in working with life and death. The major research of which this paper is part was a requirement of one healthcare clown organization, that since 2008 works as members of the palliative care unit in a public hospital in Chile. Description: Using a qualitative methodology, and an emergent and descriptive design, 26 people, including mothers and team members of one palliative care unit, participated in in-depth interviews and discussion groups separately. Data analysis was performed using grounded theory and critical discourse analysis techniques. Results: The roles played by healthcare clowns in palliative care were accompanying, mediating between team members and families, facilitating to process death, provision of humane care using socioemotional competences, promotion of social relationships, and being complementary therapy. Conclusion: The six roles of healthcare clowns identified by this research have implications for public policies and actions in palliative care. There is also a need to expand this type of work to other public health services in Chile.
RESUMO
Objetivo: El objetivo de esta investigación es comprender las percepciones de las familias acerca de los efectos de clowns de hospital en la calidad de vida de niños y familias en una unidad de cuidados paliativos pediátricos oncológicos de un hospital público chileno. Método: Bajo un diseño de tipo cualitativo, emergente, transversal y estrictas consideraciones éticas, utilizamos la técnica de entrevistas en profundidad y grupo de discusión. 16 madres que pasaron por la experiencia de cuidados paliativos con sus hijos fueron entrevistadas usando un guion en base a 6 dimensiones de calidad de vida: percepción sobre actividad física y salud, estado psicológico, autoestima, familia, amistades y escuela. Además, se efectuó un grupo de discusión con las madres para consolidar lo social de los temas del análisis de las entrevistas. Las transcripciones y los documentos se analizaron primero por separado y luego se realizó un proceso de triangulación de datos. Un paradigma interpretativista guía el análisis a través de las técnicas teoría fundamentada y análisis del discurso. Resultados: Los discursos de las participantes revelan que la presencia de clowns produce efectos psicológicos en la regulación emocional, además de ser un mecanismo para sobrellevar tanto los periodos de cuidados paliativos como los de después del fallecimiento al establecer vínculos familiares con los clowns. Asimismo, tanto los clowns como el espacio que estos ocupan en el hospital inciden en la construcción de comunidad en este contexto sanitario, aspecto de suma relevancia para las familias en el cuidado provisto. Conclusiones: La presencia de clowns incide especialmente en 2 de las 6 dimensiones de calidad de vida, el estado psicológico y las relaciones familiares, siendo además de suma relevancia en este contexto para proporcionar cuidado humanizado, contribuyendo a sobrellevar la situación a las madres durante los cuidados paliativos y tras el fallecimiento de sus hijos. (AU)
Objective: The aim of this research was to understand the perceptions of families about the effects of hospital clowns on the quality of life of children and their families in an Oncological Palliative Care Unit of a Chilean public hospital. Method: Under a qualitative, emergent, cross-sectional design and strict ethical considerations, we used an in-depth interview technique and discussion group. Sixteen mothers who went through the experience of palliative care with their children were interviewed using a script based on 6 quality of life dimensions: perception of physical activity and health, psychological state, self-esteem, family, friends and school. In addition, a discussion group was held to consolidate the topics of the analysis of the interviews. The transcripts and documents were first analyzed separately and then a data triangulation process was performed. An interpretivist paradigm guides the analysis, through discourse analysis and grounded theory techniques. Results: The discourses of participants reveal that the presence of clowns produces psychological effects on emotional regulation, as well as being a mechanism to cope with both the periods of palliative care and after death by establishing family ties with clowns. Likewise, both the clowns and the space they occupy in the hospital affect the construction of community in this health context, an aspect of great relevance for families in the the type of care provided. Conclusions: The presence of clowns has impacts especially on 2 of the 6 quality-of-life dimensions, psychological state and family relationships, being also highly relevant in the context of delivering humanized care, helping mothers to cope with the situation during palliative care and after the death of their children. (AU)
Assuntos
Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Qualidade de Vida , Pediatria , Cuidados Paliativos , Terapia do Riso/métodos , Estudos Transversais , Entrevistas como Assunto , ChileRESUMO
Resumen La presente es una síntesis de resultados de una investigación mayor, cuyo objetivo principal fue conocer las perspectivas de familias y equipo de salud respecto de la presencia de clowns de hospital trabajando en cuidados paliativos pediátricos en una unidad en Chile. Guiado por un paradigma interpretativo, estrictos criterios de calidad y éticos, la metodología utilizada fue de tipo cualitativo, aplicando las técnicas de recolección de datos de entrevistas en profundidad, análisis de documentos y grupos de discusión. La sección de datos sobre el equipo aquí presentados, se analizó a través de las técnicas análisis de contenido y análisis crítico del discurso. Los resultados indican que la figura del clown es percibida como un mediador y valorada como terapia complementaria, especialmente por las competencias socioemocionales de esos profesionales y el juego que se utiliza como herramienta de intervención. Las conclusiones señalan que las competencias socioemocionales que promueve el clown de hospital son fundamentales para el trabajo en cuidados paliativos.
Abstract This is a synthesis of results of a major research which main objective was to know the perspectives of families and the health team regarding the presence of hospital clowns working in pediatric palliative care in a unit in Chile. Guided by an interpretivist paradigm, strict quality and ethical criteria, the methodology used was qualitative, applying in-depth interviews, document analysis and discussion groups as data collection techniques. The data section presented here about the health team was analyzed through content analysis and critical discourse analysis techniques. The results indicate that the figure of the clown is perceived as a mediator, valued as complementary therapy, especially due to the socio-emotional competences of these professionals and play used as an intervention tool. The conclusions indicate that the socio-emotional competences promoted by the hospital clown are fundamental to work in palliative care.
Resumo A presente é uma síntese de resultados de uma investigação maior, cujo objetivo principal foi conhecer as perspectivas de famílias e equipe de saúde a respeito da presença de clowns de hospital trabalhando em cuidados paliativos pediátricos em uma unidade no Chile. Guiado por um paradigma interpretativo, critérios estritos de qualidade e éticos, a metodologia utilizada foi de tipo qualitativo, aplicando as técnicas de coleta de dados de entrevistas em profundidade, análise de documentos e grupos de discussão. Os dados sobre a equipe aqui apresentados, foram analisados através das técnicas de análise de conteúdo e análise crítica do discurso. Os resultados indicam que a figura do clown é percebida como um mediador e valorizada como terapia complementar, especialmente pelas capacidades sócio-emocionais desses profissionais e o jogo que se utiliza como ferramenta de intervenção. As conclusões apontam que as capacidades sócio-emocionais que promovem o clown de hospital são fundamentais para o trabalho em cuidados paliativos.
