The development and exploration of the influence of a decision aid for sequential paediatric bilateral cochlear implantation

Abstract

Introduction. Bilateral paediatric cochlear implantation is a new clinical option for children with bilateral severe to profound hearing loss. The benefits and risks associated with the procedure need to be understood by parents and considered in light of their personal values before making an acceptable decision. Objectives. (1) To explore the decision-making needs of parents regarding cochlear implants (CIs). (2) To provide updated, comprehensive information on the risks and benefits associated with paediatric bilateral CIs. (3) To develop and pilot a decision aid for sequential paediatric bilateral CIs. Methods. (1) Clinicians and parents were interviewed using a semi-structured approach, regarding CI decisions that are perceived to be difficult, barriers and facilitators to decision-making, and potential strategies for overcoming barriers. (2) Published research on paediatric CI benefits and risks was systematically gathered and synthesized. A retrospective chart review of local CI surgeries was also undertaken to estimate risks. (3) A decision aid was designed based on parents needs, reviews of benefits and risks, and international (IPDAS) standards. (4) A pre-test post-test design was used to pilot the decision aid and measure knowledge and decisional conflict aid with parents. The acceptability of the decision aid was assessed by parents and clinicians post-decision aid. Results. The need for additional decisional support was identified for some parents, particularly for bilateral CI decisions. The benefits and risks of bilateral implantation were systematically identified, documented, and estimated. A decision tool was designed to provide information about the options, their risks and benefits, as well as tools for parents to clarify and communicate the value they attribute to the risks and benefits. The piloted decision aid was acceptable to parents and clinicians and significant improvements in parents' knowledge were noted. Conclusion. Parents considering the bilateral CI decision have needs that are not being met with current decision support. An intervention that addresses this clinical gap was designed with updated evidence of benefits and risks and shows promise in improving parental decision-making for their children with hearing loss.