Cochlear implant decision-making for children with residual hearing: Perspectives of parents

Abstract

Purpose

Cochlear implant (CI) decision-making is particularly challenging for families of children who have residual hearing. Parents of these children may be uncertain about whether the potential benefits of CIs outweigh the risks. This study aimed to understand parents’ decisional needs during the decision-making process for children with residual hearing.

Method

Semi-structured interviews were conducted with parents of 11 children who had received CIs. Open-ended questions were asked to encourage parents to share their experiences about the decision-making process, their values/preferences, and their needs. The interviews were transcribed verbatim and analyzed using thematic analysis.

Results

Data were organized according to three key themes: (1) Parents’ decisional conflict, (2) values and preferences, (3) decision support and parents’ needs. We found that overall parents were satisfied with their decision-making process and the decision support from practitioners. However, parents stressed the importance of receiving more personalized information that considers their specific concerns, values and preferences related to family’s circumstances.

Conclusions

Our research provides additional evidence to guide the CI decision-making process for children with residual hearing. Additional collaborative research with audiology and decision-making experts specifically on facilitating shared decision-making is needed to provide better decision coaching for these families.

Keywords:

• Cochlear implantation
• Residual hearing
• Decision-making
• Decision support
• Family support
• Qualitative research
• Parents’ perspectives

Disclaimer statement

Acknowledgments: We are grateful to Dr. Lucie Brosseau for her guidance throughout this study. We are grateful to the families who participated in this research and to the collaborating institutions that assisted with ethics requirements and patient recruitment. We appreciate assistance with data extraction from Catherine Gay and Elsa Cattelan at the Child Hearing Lab, CHEO Research Institute.

Conflict of interest None.

Funding None.

Additional information

Notes on contributors

Eunjung Na

Eunjung Na is a research associate at the CHEO Research Institute and a postdoctoral fellow in rehabilitation science at McMaster University. She completed her PhD at the University of Ottawa, and her research focused on the cochlear implantation candidacy criteria for children with residual hearing and CI decision-making in families of children with residual hearing.

Karine Toupin-April

Dr. Karine Toupin-April is an associate professor in the School of Rehabilitation Sciences at the University of Ottawa and is also affiliated with the department of pediatrics and the CHEO Research Institute. She has research expertise in chronic disease management, patient-reported outcome measures (PROMs) and shared decision-making. Her work has included research in pediatric and adult rheumatology, with experience in conducting systematic reviews and developing PROMs, clinical practice guidelines, patient decision support interventions and self-management tools. She recently developed a web-based patient decision aid for juvenile arthritis pain. She is an editor of the Cochrane Musculoskeletal Group and the chair of the OMERACT (Outcome Measures in Rheumatology) Shared Decision-making Working Group.

Janet Olds

Janet Olds is a neuropsychologist in the Cochlear Implant Program at CHEO, an assistant professor in the department of otorhinolaryngology – head and neck surgery, faculty of medicine, University of Ottawa, and a research associate at the CHEO Research Institute. Her research interests are in psychological aspects of hearing loss, including cochlear implantation, neuropsychological functioning of pediatric health conditions including hearing loss and epilepsy, as well as health service utilization in pediatric health conditions.

Dorie Noll

Dorie Noll is an assistant professor in the department of communication disorders and deaf education at Fontbonne University. She completed her PhD research that focuses on caregiver coaching of families receiving listening and spoken language early intervention services for their children who are deaf or hard of hearing.

Elizabeth M. Fitzpatrick

Elizabeth M. Fitzpatrick is a full professor in audiology and speech-language pathology at the University of Ottawa and a senior scientist at the CHEO Research Institute. Her clinical research interests are related to interventions and outcomes in both children and adults with hearing loss and cover the spectrum of hearing disorders. Recent studies have been focused on audiological results from newborn hearing screening, the trajectory and impact of mild and unilateral hearing loss in children, children with cochlear implants, and systematic reviews on spoken language development in children.