“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study
Autor(a) principal: | |
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Data de Publicação: | 2023 |
Tipo de documento: | Dissertação |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10400.26/46565 |
Resumo: | Background: Huntington's Disease is a hereditary autosomal dominant, and neurodegenerative condition. It combines motor, cognitive and behavioural disturbances. Nowadays, Physiotherapy for Huntington´s encompasses interventions such as exercise, physical activity promotion, balance, task-specific training and education. It seeks to enable patients with impairments, activity limitations and participation restrictions to reach their optimal functional level. However there are just a few articles that relate Huntington's Disease with Physiotherapy, and as far as we know there is none in Portugal that truly evaluates the patient's and families’ needs and how Physiotherapy helps. Purpose: Understand how Physiotherapy helps in the life, challenges and problem-solving of Huntington’s Disease patients and their relatives. Additionally, understand what we can change in Physiotherapy to improve the integration of patients in society. Methods: A phenomenology qualitative work, with semi-structured, audio and video record interviews, made preferentially through APDH and other contacts. Interviews were transcribed and analysed following the theory of thematic analysis to identify salient themes. Results: A total of 18 participants were interviewed (6 patients and 12 relatives). Five themes derived: Objectives and ICF (Theme 1), Society and HD (Theme 2), Health Care and Needs in HD (Theme 3), Physiotherapy and HD (Theme 4), and Family and HD (Theme 5). Conclusions: Physiotherapy represents a powerful tool in the lifelong management of Huntington’s Disease. It seems to have a role in daily activities, autonomy, self-confidence, family management and strength and walking capacity. Although there is a need for improving the human-centred approach, to meet patients' and family members' specific objectives in order to reduce their limitations in social participation. Future studies should evaluate the quality and the content of the Physiotherapy sessions. |
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“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative studyHuntington’s DiseaseRehabilitationQuality of LifeFamilySocietyDoença de HuntingtonReabilitaçãoQualidade de VidaFamíliaSociedadeBackground: Huntington's Disease is a hereditary autosomal dominant, and neurodegenerative condition. It combines motor, cognitive and behavioural disturbances. Nowadays, Physiotherapy for Huntington´s encompasses interventions such as exercise, physical activity promotion, balance, task-specific training and education. It seeks to enable patients with impairments, activity limitations and participation restrictions to reach their optimal functional level. However there are just a few articles that relate Huntington's Disease with Physiotherapy, and as far as we know there is none in Portugal that truly evaluates the patient's and families’ needs and how Physiotherapy helps. Purpose: Understand how Physiotherapy helps in the life, challenges and problem-solving of Huntington’s Disease patients and their relatives. Additionally, understand what we can change in Physiotherapy to improve the integration of patients in society. Methods: A phenomenology qualitative work, with semi-structured, audio and video record interviews, made preferentially through APDH and other contacts. Interviews were transcribed and analysed following the theory of thematic analysis to identify salient themes. Results: A total of 18 participants were interviewed (6 patients and 12 relatives). Five themes derived: Objectives and ICF (Theme 1), Society and HD (Theme 2), Health Care and Needs in HD (Theme 3), Physiotherapy and HD (Theme 4), and Family and HD (Theme 5). Conclusions: Physiotherapy represents a powerful tool in the lifelong management of Huntington’s Disease. It seems to have a role in daily activities, autonomy, self-confidence, family management and strength and walking capacity. Although there is a need for improving the human-centred approach, to meet patients' and family members' specific objectives in order to reduce their limitations in social participation. Future studies should evaluate the quality and the content of the Physiotherapy sessions.ntrodução: A Doença de Huntington é uma condição hereditária, autossómica dominante e de carácter neurodegenerativo. Combina alterações motoras, cognitivas e comportamentais. Atualmente a Fisioterapia para a Doença de Huntington engloba intervenções como exercício, promoção da atividade física, treino de equilíbrio e tarefas específicas e educação. Procura desta forma capacitar os doentes que apresentam limitações nas atividades e restrições na participação a atingir o seu estado funcional. Porém a literatura que relaciona a Doença de Huntington com a Fisioterapia é escassa, não sendo conhecido nenhum estudo em Portugal que avalie as necessidades dos doentes e dos seus familiares em relação à Fisioterapia e como esta os ajuda. Objetivo: Perceber como é que a Fisioterapia tem um papel na vida, desafios e resolução de problemas dos doentes e dos seus familiares. Adicionalmente procuramos perceber o que é que se pode alterar na intervenção da Fisioterapia de forma a melhorar a integração dos doentes na sociedade. Métodos: Estudo qualitativo fenomenológico com entrevistas semiestruturadas áudio e vídeo gravadas, feitas preferencialmente através da Associação Portuguesa de Doentes de Huntington e outros contactos. Depois de transcritas foram analisadas através da análise temática de forma a identificar os temas relevantes. Resultados: Um total de 18 entrevistas foram incluídas (6 utentes e 12 familiares). Foram identificados 5 temas: ICF e Objetivos (Tema 1), Sociedade e DH (Tema 2), Necessidades e Cuidados de Saúde (Tema 3), Fisioterapia e DH (Tema 4), Família e DH (Tema 5). Conclusão: A Fisioterapia tem um forte contributo na gestão da Doença de Huntington. Parece ter um papel ao nível das atividades diárias, autonomia, confiança, gestão familiar, força e capacidade de marcha. Porém é preciso melhorar os cuidados centrados no utente de forma a alcançar os objetivos dos mesmos e das suas famílias de forma a reduzir as limitações sociais. Estudos futuros devem avaliar a qualidade e o conteúdo das sessões de Fisioterapia.Carreira, João CasacaRepositório ComumAgostinho, Inês Sofia Mendes2023-09-18T09:53:19Z2023-072023-07-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisapplication/pdfhttp://hdl.handle.net/10400.26/46565TID:203366948enginfo:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-12-24T03:15:38Zoai:comum.rcaap.pt:10400.26/46565Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T23:13:16.651449Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study |
title |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study |
spellingShingle |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study Agostinho, Inês Sofia Mendes Huntington’s Disease Rehabilitation Quality of Life Family Society Doença de Huntington Reabilitação Qualidade de Vida Família Sociedade |
title_short |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study |
title_full |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study |
title_fullStr |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study |
title_full_unstemmed |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study |
title_sort |
“We live with it”: portuguese patients and relatives’ perspectives of Physiotherapy role in the course of Huntington’s Disease: a qualitative study |
author |
Agostinho, Inês Sofia Mendes |
author_facet |
Agostinho, Inês Sofia Mendes |
author_role |
author |
dc.contributor.none.fl_str_mv |
Carreira, João Casaca Repositório Comum |
dc.contributor.author.fl_str_mv |
Agostinho, Inês Sofia Mendes |
dc.subject.por.fl_str_mv |
Huntington’s Disease Rehabilitation Quality of Life Family Society Doença de Huntington Reabilitação Qualidade de Vida Família Sociedade |
topic |
Huntington’s Disease Rehabilitation Quality of Life Family Society Doença de Huntington Reabilitação Qualidade de Vida Família Sociedade |
description |
Background: Huntington's Disease is a hereditary autosomal dominant, and neurodegenerative condition. It combines motor, cognitive and behavioural disturbances. Nowadays, Physiotherapy for Huntington´s encompasses interventions such as exercise, physical activity promotion, balance, task-specific training and education. It seeks to enable patients with impairments, activity limitations and participation restrictions to reach their optimal functional level. However there are just a few articles that relate Huntington's Disease with Physiotherapy, and as far as we know there is none in Portugal that truly evaluates the patient's and families’ needs and how Physiotherapy helps. Purpose: Understand how Physiotherapy helps in the life, challenges and problem-solving of Huntington’s Disease patients and their relatives. Additionally, understand what we can change in Physiotherapy to improve the integration of patients in society. Methods: A phenomenology qualitative work, with semi-structured, audio and video record interviews, made preferentially through APDH and other contacts. Interviews were transcribed and analysed following the theory of thematic analysis to identify salient themes. Results: A total of 18 participants were interviewed (6 patients and 12 relatives). Five themes derived: Objectives and ICF (Theme 1), Society and HD (Theme 2), Health Care and Needs in HD (Theme 3), Physiotherapy and HD (Theme 4), and Family and HD (Theme 5). Conclusions: Physiotherapy represents a powerful tool in the lifelong management of Huntington’s Disease. It seems to have a role in daily activities, autonomy, self-confidence, family management and strength and walking capacity. Although there is a need for improving the human-centred approach, to meet patients' and family members' specific objectives in order to reduce their limitations in social participation. Future studies should evaluate the quality and the content of the Physiotherapy sessions. |
publishDate |
2023 |
dc.date.none.fl_str_mv |
2023-09-18T09:53:19Z 2023-07 2023-07-01T00:00:00Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/masterThesis |
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masterThesis |
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publishedVersion |
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http://hdl.handle.net/10400.26/46565 TID:203366948 |
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eng |
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