Clinical decision making for children with down syndrome and hearing loss

Aims Otitis media with effusion (OME) and its associated hearing loss is prevalent in children with Down syndrome (DS) (Fortnum et al, 2014). There are a range of interventions available but they have associated risks and benefits specific to children with DS. Parents reported a perception of inconsistent care with interventions chosen based on clinician preference (Fortnum et al, 2014). This study aimed to examine how professionals make decisions about managing hearing loss in children with DS.

Methods This project used a grounded theory approach to explore decision making. A range of multi-disciplinary professionals who work with children with DS and hearing loss were purposively sampled. Interviews were conducted face to face or by phone with 10 professionals. Constant comparative analysis was used to identify decision making processes.

Results Themes were linked to a framework illustrating how the variation in clinician decision making occurred. Clinician preference was determined by individual attitude towards the patient and belief in treatment efficacy and availability. Attitude was associated with professional role and scope of practice. Contextual factors relating to local service delivery influenced the interventions offered to parents. Multi-disciplinary relationships were described to be important but often felt to be unsatisfactory and in some cases hindered decision making. Hearing aids were perceived by some clinicians as a burden to parents, particularly when a child also had a visual impairment.

Conclusions There is variation in response to OME and hearing loss across the professional groups involved with the child. There is scope for improving shared decision making between clinicians and parents when making decisions about managing hearing loss.