Abstract
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.
| Original language | English |
|---|---|
| Article number | e14133 |
| Pages (from-to) | 1-8 |
| Number of pages | 8 |
| Journal | Health Expectations |
| Volume | 27 |
| Issue number | 4 |
| Early online date | 10 Jul 2024 |
| DOIs | |
| Publication status | Published - Aug 2024 |
Bibliographical note
Publisher Copyright:© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.
Funding
We thank the Musi-CI foundation and participating CI users for their contribution to this research project. J.V. founded the Musi\u2010CI foundation and brought together a team of different healthcare disciplines involved with CI rehabilitation from two academic hospitals, the Musi\u2010CI consortium (\u2009=\u20097), to support her. From the first hospital: C.B. (speech and language pathologist), W.H. (speech and language scientist), from the second hospital: A.G. (speech and language pathologist), H.V. (CI and hearing scientist), A.H. (medical physics expert audiology and scientist) and the Musi\u2010CI foundation. M.M., the first author of this paper (allied health and education scientist), designed and navigated the research project as an action researcher. All consortium partners volunteered to participate, and shared their love for music and their willingness to explore new pathways in CI rehabilitation. J.V. applied for a grant of the funding programme \u2018ZonMw Voor Elkaar\u2019 supported by the consortium. The aim of this call for grants was to finance projects of organizations whose core task is to defend the interests of people with a chronic illness and support the use of experiential knowledge and expertise. Lay persons are allowed to apply for this grant. In July 2019, the Musi\u2010CI foundation received a grant for the development and evaluation of a musical hearing training programme. The consortium can be considered as a result\u2010accountable team that worked on behalf of the Musi\u2010CI foundation. A participatory action research (PAR) approach was chosen to develop and evaluate the Musi\u2010CI programme and to write a handbook for CI\u2010rehabilitation professionals involving all consortium partners and CI users (training participants) as programme developers. PAR is a collaborative approach to research that involves active participation from both researchers and the individuals or communities directly affected by the research topic. PAR emphasizes a cyclical process of (1) Plan, (2) Act, (3) Observe and (4) Reflect with the goal of empowering participants to drive positive changes in healthcare practices and policies [ 3 ]. The PAR approach was new to the consortium partners. J.V. was educated by M.M. in the PAR methodology. n
| Funders | Funder number |
|---|---|
| Musi-CI foundation | |
| ZonMw |
Keywords
- action research
- cochlear implants
- patient empowerment
- patient involvement