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Patient-Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A Reflexive Process Evaluation.

التفاصيل البيبلوغرافية
العنوان: Patient-Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A Reflexive Process Evaluation.
المؤلفون: Maas MJM; Radboudumc IQ Health, Radboud University, Nijmegen, the Netherlands.; Department Allied Health Sciences, HAN University of Applied Sciences, Nijmegen, the Netherlands., Veltman J; Stichting Musi-CI, Breda, the Netherlands., van der Wees PJ; Radboudumc IQ Health, Radboud University, Nijmegen, the Netherlands., Beijk C; Department of Otorhinolaryngology, Radboudumc, Nijmegen, the Netherlands., Huinck WJ; Department of Otorhinolaryngology, Radboudumc, Nijmegen, the Netherlands.; Donders Institute for Brain, Cognition and Behaviour, Radboud University, Nijmegen, the Netherlands., Groenhuis AYM; Department of Otorhinolaryngology and Head & Neck Surgery, UMC Utrecht, Utrecht, the Netherlands., Versnel H; Department of Otorhinolaryngology and Head & Neck Surgery, UMC Utrecht, Utrecht, the Netherlands.; School of Business and Economics, Management and Organisation, VU University Amsterdam, Amsterdam, the Netherlands., Schuiling G; School of Business and Economics, Management and Organisation, VU University Amsterdam, Amsterdam, the Netherlands., Hoetink AE; Department of Otorhinolaryngology and Head & Neck Surgery, UMC Utrecht, Utrecht, the Netherlands.; UMC Utrecht Brain Center, Utrecht, the Netherlands.
المصدر: Health expectations : an international journal of public participation in health care and health policy [Health Expect] 2024 Aug; Vol. 27 (4), pp. e14133.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: Wiley Country of Publication: England NLM ID: 9815926 Publication Model: Print Cited Medium: Internet ISSN: 1369-7625 (Electronic) Linking ISSN: 13696513 NLM ISO Abbreviation: Health Expect Subsets: MEDLINE
أسماء مطبوعة: Original Publication: Oxford, UK : Wiley, c1998-
مواضيع طبية MeSH: Cochlear Implants*, Humans ; Music ; Program Development ; Patient Participation ; Hearing Loss/rehabilitation ; Music Therapy ; Program Evaluation
مستخلص: Background: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient-led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi-CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi-CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi-CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi-CI programme development process and its impact on professional CI rehabilitation and research.
Methods: Programme development was described using a 3-layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video-recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis.
Results: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI-rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift.
Conclusion: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research.
Patient or Public Contribution: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write-up of the results, and co-authored this paper.
(© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)
References: Res Involv Engagem. 2021 Sep 25;7(1):67. (PMID: 34563267)
BMC Health Serv Res. 2014 Feb 26;14:89. (PMID: 24568690)
Sensors (Basel). 2022 Nov 13;22(22):. (PMID: 36433364)
Pain Rep. 2021 Apr 13;6(1):e913. (PMID: 33987484)
Implement Sci. 2012 Mar 20;7:20. (PMID: 22433980)
Res Involv Engagem. 2022 Aug 8;8(1):41. (PMID: 35941661)
Front Neurosci. 2019 Nov 21;13:1229. (PMID: 31824240)
Ear Hear. 2017 Sep/Oct;38(5):521-538. (PMID: 28399064)
Res Involv Engagem. 2018 Jul 10;4:21. (PMID: 30002875)
Health Expect. 2017 Jun;20(3):369-370. (PMID: 28514520)
Clin Exp Otorhinolaryngol. 2021 Feb;14(1):15-28. (PMID: 32646208)
Health Expect. 2019 Oct;22(5):952-964. (PMID: 31044517)
Res Involv Engagem. 2020 Feb 10;6:4. (PMID: 32055415)
Amyotroph Lateral Scler Frontotemporal Degener. 2015;16(5-6):418-22. (PMID: 25800785)
Trends Hear. 2023 Jan-Dec;27:23312165231198368. (PMID: 37697865)
Ann Transl Med. 2022 Oct;10(19):1073. (PMID: 36330400)
BMJ Qual Saf. 2016 Jul;25(7):509-17. (PMID: 26376674)
Lancet Rheumatol. 2023 Apr;5(4):e180. (PMID: 38251519)
Health Expect. 2021 Aug;24(4):1378-1390. (PMID: 34153165)
Soc Sci Med. 2019 Oct;238:112366. (PMID: 31345612)
معلومات مُعتمدة: The authors received no specific funding for this work.
فهرسة مساهمة: Keywords: action research; cochlear implants; patient empowerment; patient involvement
تواريخ الأحداث: Date Created: 20240711 Date Completed: 20240711 Latest Revision: 20240714
رمز التحديث: 20240714
مُعرف محوري في PubMed: PMC11236901
DOI: 10.1111/hex.14133
PMID: 38988044
قاعدة البيانات: MEDLINE
الوصف
تدمد:1369-7625
DOI:10.1111/hex.14133