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Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue

OBJECTIVE: To obtain insight into experiences of patients with a neuromuscular disease and chronic fatigue and their healthcare professionals regarding content and delivery of a multidisciplinary outpatient self-management group programme to improve social participation. This will inform future impl...

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Autores principales: Veenhuizen, Yvonne, Satink, Ton, Graff, Maud JL, Geurts, Alexander CH, Groothuis, Jan T, van Engelen, Baziel GM, Nijhuis-van der Sanden, Maria WG, Cup, Edith HC
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8388284/
https://www.ncbi.nlm.nih.gov/pubmed/34433601
http://dx.doi.org/10.1136/bmjopen-2021-048890
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author Veenhuizen, Yvonne
Satink, Ton
Graff, Maud JL
Geurts, Alexander CH
Groothuis, Jan T
van Engelen, Baziel GM
Nijhuis-van der Sanden, Maria WG
Cup, Edith HC
author_facet Veenhuizen, Yvonne
Satink, Ton
Graff, Maud JL
Geurts, Alexander CH
Groothuis, Jan T
van Engelen, Baziel GM
Nijhuis-van der Sanden, Maria WG
Cup, Edith HC
author_sort Veenhuizen, Yvonne
collection PubMed
description OBJECTIVE: To obtain insight into experiences of patients with a neuromuscular disease and chronic fatigue and their healthcare professionals regarding content and delivery of a multidisciplinary outpatient self-management group programme to improve social participation. This will inform future implementation. DESIGN: A mixed method study alongside a randomised controlled trial. SETTING: University hospital, rehabilitation centre and community health centre. PARTICIPANTS: 29 patients with a neuromuscular disease and chronic fatigue and 13 healthcare professionals participated in this mixed methods study. INTERVENTION: Multidisciplinary group programme, called Energetic, consisted of a 4 months intervention with weekly meetings and covered four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy conservation strategies and (4) implementation and relapse prevention in daily life. MAIN MEASURES: Quantitative data were collected by a questionnaire measuring patients’ (n=25, all completed the programme) satisfaction with the perceived results, content and delivery of the programme. Qualitative data were collected by individual and focus group interviews to gain insight in the experiences of patients (n=18), next of kin (n=2) and healthcare professionals (n=13) with facilitators and barriers to programme implementation. RESULTS: Patients were satisfied with the number and length of the sessions, the different modules and the therapists. Analysis of the interviews led to five themes: (1) the combination of modules makes a complete picture, (2) the programme is physically and mentally intensive, (3) the group setting is valuable, (4) small variations in delivery occur in different settings, (5) therapists are coaches. Suggestions for programme improvement include a combination of face to face and e-health, enhancement of therapists’ skills in guiding group interventions and inclusion of more booster sessions to evaluate and maintain self-management competencies. CONCLUSIONS: The Energetic programme could be implemented in different healthcare settings and group settings, and a combination of modules proved to be a facilitator for improving self-management. TRIAL REGISTRATION NUMBER: NCT02208687.
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spelling pubmed-83882842021-09-14 Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue Veenhuizen, Yvonne Satink, Ton Graff, Maud JL Geurts, Alexander CH Groothuis, Jan T van Engelen, Baziel GM Nijhuis-van der Sanden, Maria WG Cup, Edith HC BMJ Open Rehabilitation Medicine OBJECTIVE: To obtain insight into experiences of patients with a neuromuscular disease and chronic fatigue and their healthcare professionals regarding content and delivery of a multidisciplinary outpatient self-management group programme to improve social participation. This will inform future implementation. DESIGN: A mixed method study alongside a randomised controlled trial. SETTING: University hospital, rehabilitation centre and community health centre. PARTICIPANTS: 29 patients with a neuromuscular disease and chronic fatigue and 13 healthcare professionals participated in this mixed methods study. INTERVENTION: Multidisciplinary group programme, called Energetic, consisted of a 4 months intervention with weekly meetings and covered four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy conservation strategies and (4) implementation and relapse prevention in daily life. MAIN MEASURES: Quantitative data were collected by a questionnaire measuring patients’ (n=25, all completed the programme) satisfaction with the perceived results, content and delivery of the programme. Qualitative data were collected by individual and focus group interviews to gain insight in the experiences of patients (n=18), next of kin (n=2) and healthcare professionals (n=13) with facilitators and barriers to programme implementation. RESULTS: Patients were satisfied with the number and length of the sessions, the different modules and the therapists. Analysis of the interviews led to five themes: (1) the combination of modules makes a complete picture, (2) the programme is physically and mentally intensive, (3) the group setting is valuable, (4) small variations in delivery occur in different settings, (5) therapists are coaches. Suggestions for programme improvement include a combination of face to face and e-health, enhancement of therapists’ skills in guiding group interventions and inclusion of more booster sessions to evaluate and maintain self-management competencies. CONCLUSIONS: The Energetic programme could be implemented in different healthcare settings and group settings, and a combination of modules proved to be a facilitator for improving self-management. TRIAL REGISTRATION NUMBER: NCT02208687. BMJ Publishing Group 2021-08-25 /pmc/articles/PMC8388284/ /pubmed/34433601 http://dx.doi.org/10.1136/bmjopen-2021-048890 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Rehabilitation Medicine
Veenhuizen, Yvonne
Satink, Ton
Graff, Maud JL
Geurts, Alexander CH
Groothuis, Jan T
van Engelen, Baziel GM
Nijhuis-van der Sanden, Maria WG
Cup, Edith HC
Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
title Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
title_full Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
title_fullStr Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
title_full_unstemmed Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
title_short Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
title_sort mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
topic Rehabilitation Medicine
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8388284/
https://www.ncbi.nlm.nih.gov/pubmed/34433601
http://dx.doi.org/10.1136/bmjopen-2021-048890
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