Impact of paediatric cochlear implantation on family life: a conceptual framework informed by parents

Disabil Rehabil. 2024 Apr 12:1-14. doi: 10.1080/09638288.2024.2337094. Online ahead of print.

Abstract

Purpose: While the impact of paediatric cochlear implantation on parents and siblings are recognised, limited evidence exists regarding the effect of paediatric cochlear implantation on the entire family life (e.g., routine interactions, family activities). This study aimed to describe the impact of paediatric cochlear implantation on family life as perceived by parents, using concept mapping.

Materials and methods: Parents of paediatric cochlear implant (CI) recipients (n = 29) participated in this concept mapping study to generate, group, and rate statements regarding the impact of paediatric cochlear implantation on family life.

Results: In total, 99 unique statements described the impact of paediatric cochlear implantation on family life. The concept map revealed six concepts, namely (i) Financial Outlay and Supports; (ii) Education and Therapy; (iii) Responsibilities and Sacrifices; (iv) Extended Family and Community; (v) Spouses and Siblings and (vi) Achievements and Enrichments.

Conclusions: This study highlights the multiple areas of family life affected by paediatric cochlear implantation. To improve patient-and-family-centered care, these factors must be considered during pre-operative and successive counselling of paediatric CI recipients and their families.

Keywords: Paediatric cochlear implantation; concept mapping; deaf and/or hard of hearing; family life; patient-and-family-centered care.

Plain language summary

The diagnosis of a child as deaf and/or hard of hearing followed by cochlear implantation influences the family life of paediatric cochlear implant recipients and their family members.Concept mapping identified multiple areas of family life influenced by paediatric cochlear implantation.The areas were quantified in terms of how parents perceived these potential family life changes as positive or negative, as well as how important it is for other parents to be aware of these changes prior to paediatric cochlear implantation.A greater understanding of the impact of paediatric cochlear implantation on family life will inform patient-and-family-centered care service delivery to paediatric cochlear implant recipients and their families.Cochlear implant clinicians can utilize these concepts to encourage discussion and collaboration among clinicians, paediatric cochlear implant recipients, and their families.These concepts can support healthcare professionals in strategizing, decision-making, assessing practices, and creating frameworks for pre-operative counselling sessions and subsequent rehabilitation sessions.