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

Abstract

Numerous studies have investigated the effect of permanent childhood hearing loss and cochlear implantation on parents and siblings, but there is limited evidence available regarding the effect of paediatric cochlear implantation on family life, known as the routine interactions and activities that families have together. The aim of this study was to generate a conceptual framework that describes the impact of paediatric cochlear implantation on family life as perceived by parents. Participants included parents of paediatric (<18 years) cochlear implant recipients who had been implanted for at least 12 months. A total of 29 parents participated in this research study. A participatory mixed-method design, namely concept mapping was used. Concept mapping involves six steps namely (1) preparation, (2) generation of ideas via brainstorming, (3) structuring of ideas via grouping and rating, (4) analysis and representation, (5) interpretation and (6) utilization of the results. Brainstorming sessions were held in-person and online, and as individual and group sessions. Parents attended one brainstorming session via their preferred mode, wherein they generated statements describing the changes in family life that occurred since their child received their cochlear implants. Parents then grouped and rated these statements to identify concepts. Data analysis involved multidimensional scaling and hierarchical cluster analysis to create a conceptual framework. In total, 99 unique statements described the impact of paediatric cochlear implantation on family life. The grouping activity yielded 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”. Statements grouped in “Financial Outlay and Supports”, “Achievements and Enrichments” and “Spouses and Siblings” were rated as the most important possible changes to be aware of prior to proceeding with paediatric cochlear implantation, while statements in “Achievements and Enrichments” was rated as the most positive and statements in “Financial Outlay and Supports” and “Extended Family and Community” as the most negative in terms of family life experiences. This study highlights the multiple areas of family life affected by the diagnosis of permanent childhood hearing loss and subsequent paediatric cochlear implantation. To improve patient-and-family-centred care, these factors need to be considered during pre-implantation and successive counselling of a paediatric CI recipient and their family members