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

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.

Development of the Musi-CI Training, A Musical Listening Training for Cochlear Implant Users: A Participatory Action Research Approach.

A cochlear implant (CI) is a prosthesis that allows people with severe to profound hearing loss to understand speech in quiet settings. However, listening to music presents a challenge to most CI users; they often do not enjoy music or avoid it altogether. The Musi-CI training course was developed for CI users with the goal of reducing music aversion and improving music enjoyment. A consortium was established consisting of a professional musician with CI, CI rehabilitation professionals and researchers. Participatory action research (PAR) was applied to develop and evaluate the training experiences, collaborating with 37 CI users during three cycles of eight training sessions, each held over a period of 3 months. Input and feedback were collected after each training session using questionnaires, observations and focus group interviews. Almost all participants (86%) completed the training. After completing the training a large majority of participants reported increased music appreciation, increased social participation in musical settings and a positive impact on general auditory perception. The resulting Musi-CI training programme focuses on music listening skills, self-efficacy, and self-motivation. It consists of exercises intended to strengthen attention and working memory, to improve beat and rhythm perception (with online rhythm exercises) and exercises to distinguish timbre of instruments and emotion in music. A Melody Game was developed to improve pitch and melodic contour discrimination.

Technological and Rehabilitative Concerns: Perspectives of Cochlear Implant Recipients Who Are Musicians.

In these perspectives, we share the experiences of eight cochlear implant (CI) recipients who are musicians, and their efforts within and outside of audiological appointments to achieve satisfying music experiences. Their experiences were previously shared in a panel discussion as part of the 3rd Music and Cochlear Implant Symposium hosted at The University of Cambridge, United Kingdom. Following the symposium, the panel members and moderator developed and completed a follow-up questionnaire to facilitate a formal analysis of the following questions: (a) What forms of support for optimizing music exist within clinical CI appointments, including counseling, mapping, assessment, and rehabilitation? (b) What forms of support do CI users who are interested in music desire? (c) What self-initiated approaches can be used to improve music perception, enjoyment, and participation? Using qualitative methodology, the questionnaire data were coded, aggregated into themes, and then into core categories. The primary themes that emerged from the data were (a) limited levels of support for optimizing music outcomes within normal clinical appointments, (b) difficulties in current mapping and assessment in relation to music perception, and (c) limited availability of clinically sponsored training/rehabilitation for music. These CI recipients then recommended clinical protocol changes and described self-initiated rehabilitation. These findings were examined in relation to literature on clinical practices for CI users, auditory rehabilitation, and patient-centered care, emphasizing best practices and barriers to audiological care. The data as related to healthcare trends were conceptualized and developed into a proposed Reciprocal Model for Music Rehabilitation (RMMR).