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Lived Experiences of Physiotherapists in Caring for People with Advanced Amyotrophic Lateral Sclerosis in Portugal: A Phenomenological Study
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Abstract(s)
Contexto: A esclerose lateral amiotrófica (ELA) é uma doença que provoca um impacto multidimensional na vida da pessoa doente, estando os seus sintomas associados a uma perda significativa da autonomia. Assim, os Cuidados Paliativos (CP) especializados devem ser disponibilizados precocemente e durante todo o percurso da doença. Paralelamente, os fisioterapeutas devem ser reconhecidos como elementos integrantes da equipa multidisciplinar em CP, na melhoria da qualidade de vida destas pessoas. Objetivo: O presente estudo visou descrever a experiência vivida pelos fisioterapeutas no contexto da intervenção em pessoas com ELA avançada e suas famílias. Metodologia: A fenomenologia descritiva foi utilizada como referencial para a realização de entrevistas individuais com o intuito de revelar a experiência vivida. Participaram no estudo 16 fisioterapeutas que tivessem acompanhado pelo menos uma pessoa com ELA avançada, nos dois anos anteriores à colheita de dados. O estudo envolveu a realização de entrevistas semiestruturadas, através da plataforma de videoconferência ZOOM. Os dados foram analisados de acordo com a abordagem de cinco fases de Amadeo Giorgi e geridos através do software webQDA. Foi ainda utilizada a lista de verificação COREQ. Resultados: Os participantes eram maioritariamente do sexo feminino (n=12) e tinham idades compreendidas entre os 26 e os 55 anos (M = 36,81; DP = 6,75). Foram identificados quatro constituintes: 1) Curso ondulante da trajetória da doença; 2) Barreiras ao cuidado centrado na pessoa; 3) Facilitadores do cuidado centrado na pessoa; 4) Transição entre cuidados curativos e paliativos. Conclusão: Os achados obtidos ilustraram o impacto multidimensional da trajetória da doença na pessoa e sua família, e realçaram a necessidade de apostar na formação especializada dos fisioterapeutas, contribuindo para uma prática de CP centrada na pessoa, com impacto na promoção do conforto e da qualidade de vida.
Background: Amyotrophic lateral sclerosis (ALS) is a disease that has a multidimensional impact on an ill person's life, with symptoms associated with a significant loss of autonomy. Specialized Palliative Care (PC) should be provided early and throughout the course of the disease. Indeed, physiotherapists should be understood as integral members of the multidisciplinary team in PC, in the care and improvement of the quality of life of these people. Objective: This study aimed to describe the lived experience of physiotherapists in the context of intervention in people with advanced ALS and their families. Methods: Descriptive phenomenology was employed as a framework for conducting individual interviews to reveal lived experiences. Sixteen physiotherapists who performed interventions on at least one person with advanced ALS in the last 2 years were included in the study. The study involved conducting semi-structured interviews, through the ZOOM videoconferencing platform. Data were analyzed according to Amadeo Giorgi's five-stage approach and managed using webQDA software. The COREQ checklist was applied in the study. Results: Participants were mostly female (n=12) and aged between 26 and 55 years (M = 36.81; SD = 6.75). Four constituents were identified: 1) Undulating course of a complex disease; 2) Barriers to person-centered care; 3) Enablers of person-centered care; 4) Transition between curative and palliative care. Conclusion: The findings illustrated the multidimensional impact of the disease trajectory on the person and their family. This study also highlighted the need to invest in specialized training for physiotherapists, contributing to a person-centered PC practice with an impact on promoting comfort and quality of life.
Background: Amyotrophic lateral sclerosis (ALS) is a disease that has a multidimensional impact on an ill person's life, with symptoms associated with a significant loss of autonomy. Specialized Palliative Care (PC) should be provided early and throughout the course of the disease. Indeed, physiotherapists should be understood as integral members of the multidisciplinary team in PC, in the care and improvement of the quality of life of these people. Objective: This study aimed to describe the lived experience of physiotherapists in the context of intervention in people with advanced ALS and their families. Methods: Descriptive phenomenology was employed as a framework for conducting individual interviews to reveal lived experiences. Sixteen physiotherapists who performed interventions on at least one person with advanced ALS in the last 2 years were included in the study. The study involved conducting semi-structured interviews, through the ZOOM videoconferencing platform. Data were analyzed according to Amadeo Giorgi's five-stage approach and managed using webQDA software. The COREQ checklist was applied in the study. Results: Participants were mostly female (n=12) and aged between 26 and 55 years (M = 36.81; SD = 6.75). Four constituents were identified: 1) Undulating course of a complex disease; 2) Barriers to person-centered care; 3) Enablers of person-centered care; 4) Transition between curative and palliative care. Conclusion: The findings illustrated the multidimensional impact of the disease trajectory on the person and their family. This study also highlighted the need to invest in specialized training for physiotherapists, contributing to a person-centered PC practice with an impact on promoting comfort and quality of life.
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Keywords
Neurodegenerative disease Amyotrophic lateral sclerosis Palliative care Physiotherapy Rehabilitation Qualitative study