Cargando…

Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study

BACKGROUND: High quality care of patients with neuromuscular diseases requires a personalised approach that focuses on achieving and maintaining a level of functioning that enables them to be in a state of well-being. The capability approach states that well-being should be understood in terms of ca...

Descripción completa

Detalles Bibliográficos
Autores principales: Bloemen, Bart, Pijpers, Eirlys, Cup, Edith, Groothuis, Jan, van Engelen, Baziel, van der Wilt, Gert Jan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8691629/
https://www.ncbi.nlm.nih.gov/pubmed/34932590
http://dx.doi.org/10.1371/journal.pone.0261475
_version_ 1784618802984517632
author Bloemen, Bart
Pijpers, Eirlys
Cup, Edith
Groothuis, Jan
van Engelen, Baziel
van der Wilt, Gert Jan
author_facet Bloemen, Bart
Pijpers, Eirlys
Cup, Edith
Groothuis, Jan
van Engelen, Baziel
van der Wilt, Gert Jan
author_sort Bloemen, Bart
collection PubMed
description BACKGROUND: High quality care of patients with neuromuscular diseases requires a personalised approach that focuses on achieving and maintaining a level of functioning that enables them to be in a state of well-being. The capability approach states that well-being should be understood in terms of capabilities, the substantial opportunities that people have to be and do things they have reasons to value. In this Rehabilitation and Capability care for patients with Neuromuscular diseases (ReCap-NMD) study, we want to investigate whether providing care based on the capability approach (capability care) has an added value in the rehabilitation of patients with neuromuscular diseases (NMD). METHODS: Two groups of 30 adult patients with facioscapulohumeral muscular dystrophy or myotonic dystrophy type 1 will be included. The first group will receive rehabilitation care as usual with a follow-up period of 6 months. Then, based on theory, and experiences of patients and healthcare professionals, capability care will be developed. During the following 3 months, the multidisciplinary outpatient rehabilitation care team will be trained in providing this newly developed capability care. Subsequently, the second group will receive capability care, with a follow-up period of 6 months. A mixed methods approach is used with both qualitative and quantitative outcome measures to evaluate the effect of capability care and to perform a process evaluation. The primary outcome measure will be the Canadian Occupational Performance Measure. DISCUSSION: The ReCap-NMD study is the first study to design and implement a healthcare intervention based on the capability approach. The results of this study will expand our knowledge on how the capability approach can be applied in delivering and evaluating healthcare, and will show whether implementing such an intervention leads to a higher well-being for patients with NMD. TRIAL REGISTRATION: Registered at Trialregister.nl (Trial NL8946) on 12(th) of October, 2020.
format Online
Article
Text
id pubmed-8691629
institution National Center for Biotechnology Information
language English
publishDate 2021
publisher Public Library of Science
record_format MEDLINE/PubMed
spelling pubmed-86916292021-12-22 Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study Bloemen, Bart Pijpers, Eirlys Cup, Edith Groothuis, Jan van Engelen, Baziel van der Wilt, Gert Jan PLoS One Study Protocol BACKGROUND: High quality care of patients with neuromuscular diseases requires a personalised approach that focuses on achieving and maintaining a level of functioning that enables them to be in a state of well-being. The capability approach states that well-being should be understood in terms of capabilities, the substantial opportunities that people have to be and do things they have reasons to value. In this Rehabilitation and Capability care for patients with Neuromuscular diseases (ReCap-NMD) study, we want to investigate whether providing care based on the capability approach (capability care) has an added value in the rehabilitation of patients with neuromuscular diseases (NMD). METHODS: Two groups of 30 adult patients with facioscapulohumeral muscular dystrophy or myotonic dystrophy type 1 will be included. The first group will receive rehabilitation care as usual with a follow-up period of 6 months. Then, based on theory, and experiences of patients and healthcare professionals, capability care will be developed. During the following 3 months, the multidisciplinary outpatient rehabilitation care team will be trained in providing this newly developed capability care. Subsequently, the second group will receive capability care, with a follow-up period of 6 months. A mixed methods approach is used with both qualitative and quantitative outcome measures to evaluate the effect of capability care and to perform a process evaluation. The primary outcome measure will be the Canadian Occupational Performance Measure. DISCUSSION: The ReCap-NMD study is the first study to design and implement a healthcare intervention based on the capability approach. The results of this study will expand our knowledge on how the capability approach can be applied in delivering and evaluating healthcare, and will show whether implementing such an intervention leads to a higher well-being for patients with NMD. TRIAL REGISTRATION: Registered at Trialregister.nl (Trial NL8946) on 12(th) of October, 2020. Public Library of Science 2021-12-21 /pmc/articles/PMC8691629/ /pubmed/34932590 http://dx.doi.org/10.1371/journal.pone.0261475 Text en © 2021 Bloemen et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Study Protocol
Bloemen, Bart
Pijpers, Eirlys
Cup, Edith
Groothuis, Jan
van Engelen, Baziel
van der Wilt, Gert Jan
Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study
title Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study
title_full Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study
title_fullStr Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study
title_full_unstemmed Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study
title_short Care for capabilities: Implementing the capability approach in rehabilitation of patients with neuromuscular diseases. Study protocol of the controlled before-after ReCap-NMD study
title_sort care for capabilities: implementing the capability approach in rehabilitation of patients with neuromuscular diseases. study protocol of the controlled before-after recap-nmd study
topic Study Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8691629/
https://www.ncbi.nlm.nih.gov/pubmed/34932590
http://dx.doi.org/10.1371/journal.pone.0261475
work_keys_str_mv AT bloemenbart careforcapabilitiesimplementingthecapabilityapproachinrehabilitationofpatientswithneuromusculardiseasesstudyprotocolofthecontrolledbeforeafterrecapnmdstudy
AT pijperseirlys careforcapabilitiesimplementingthecapabilityapproachinrehabilitationofpatientswithneuromusculardiseasesstudyprotocolofthecontrolledbeforeafterrecapnmdstudy
AT cupedith careforcapabilitiesimplementingthecapabilityapproachinrehabilitationofpatientswithneuromusculardiseasesstudyprotocolofthecontrolledbeforeafterrecapnmdstudy
AT groothuisjan careforcapabilitiesimplementingthecapabilityapproachinrehabilitationofpatientswithneuromusculardiseasesstudyprotocolofthecontrolledbeforeafterrecapnmdstudy
AT vanengelenbaziel careforcapabilitiesimplementingthecapabilityapproachinrehabilitationofpatientswithneuromusculardiseasesstudyprotocolofthecontrolledbeforeafterrecapnmdstudy
AT vanderwiltgertjan careforcapabilitiesimplementingthecapabilityapproachinrehabilitationofpatientswithneuromusculardiseasesstudyprotocolofthecontrolledbeforeafterrecapnmdstudy