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Updated: Jun 21, 2025

Systematic Hearing Performance Evaluation Process for Adolescents with Cochlear Implantation at Early Ages
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Patient-Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A

Marjo J M Maas1,2, Joke Veltman3, Philip J van der Wees1

  • 1Radboudumc IQ Health, Radboud University, Nijmegen, the Netherlands.

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy
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Summary

Patient involvement in research is growing. A patient-led project developed the Musi-CI programme to improve music enjoyment for cochlear implant (CI) users, enhancing social participation and transforming rehabilitation research.

Keywords:
action researchcochlear implantspatient empowermentpatient involvement

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Area of Science:

  • Audiology
  • Rehabilitation Science
  • Patient-Centered Research

Background:

  • Patient roles in healthcare research are evolving but remain limited.
  • Cochlear implants (CI) restore hearing but often do not enable music enjoyment, sometimes causing aversion.
  • The Musi-CI programme was developed to address music aversion in CI users, aiming to improve enjoyment and social participation.

Purpose of the Study:

  • To describe and evaluate the development process of the patient-led Musi-CI programme.
  • To assess the impact of the Musi-CI programme on professional cochlear implant (CI) rehabilitation and research.

Main Methods:

  • A 3-layered action research model was used, encompassing CI user, healthcare professional, and research processes.
  • Consortium partners provided written feedback and participated in a video-recorded reflexive evaluation session.
  • Template analysis was applied to written comments and video data to evaluate the programme development.

Main Results:

  • Involving an expert by experience (patient) was challenging yet rewarding, offering new perspectives on CI rehabilitation and research.
  • Programme development themes included professional space and acknowledgement.
  • Outcomes on CI rehabilitation and research revealed critical reflection and a paradigm shift.

Conclusions:

  • Experts by experience bring valuable, diverse knowledge that can drive change in rehabilitation and research.
  • The patient-led Musi-CI programme development demonstrated the potential for significant impact on CI user outcomes and the research landscape.