The Parents’ perspective of the early diagnostic period of their child with hearing loss: information and support (Outcomes Symposium paper 4)

Dr Nerina Scarinci1,2, Dr Ennur  Erbasi1,2, Emily  Moore1, Dr Teresa Ching2,3, Vivienne Marnane2,3

1University of Queensland, St Lucia, Australia,

2HEARing CRC, , Australia,

3National Acoustic Laboratories, Macquarie University, Australia

We propose a series of 4 papers to feature in a Symposium on Improving outcomes for children through early detection and intervention. All papers draw on data from the Longitudinal Outcomes of Children with Hearing Impairment (LOCHI) study to shed light on children’s abilities and parents’ perspectives.

Objective: This study aimed to explore the perspectives of caregivers regarding the information and support they received following diagnosis of their child’s hearing loss.

Methods: A mixed methods explanatory sequential design was conducted. Study Sample: A total of 445 caregivers of children completed a written survey, and five parents participated in qualitative in-depth interviews.

Results:  The most common sources of information for caregivers were discussion with an audiologist, written information, and discussion with a medical professional. Approximately 85% of caregivers reported they were satisfied with the personal/emotional support and information received from service providers. Additional comments from 91 caregivers indicated that 11% experienced a breakdown in information transfer with health professionals. Interviews conducted with 5 parents from 3 families revealed two themes which described the diagnostic period as a difficult and emotional experience for parents: (1) support and information provided during diagnosis: what happens first?; and (2) accessing early intervention services following a diagnosis of hearing loss: navigating the maze.

Conclusions: The findings of this study give insight into the perspectives of caregivers who have a child diagnosed with hearing loss. The importance of providing timely information and personal/emotional support to caregivers cannot be underestimated. Early intervention was effective in improving speech perception for children using CIs.


Dr Ennur Erbasi is a Research Fellow within the School of Health Sciences at The University of Melbourne. She is a member of the Communication Disability Centre and The HEARing Cooperative Research Centre. Ennur’s research interests include: early intervention outcomes for children with hearing loss; parental involvement in intervention; family- and person-centred care in hearing (re)habilitation; and the translation of research into clinical practice. Currently, Ennur is working within a multi-disciplinary team who are investigating the implementation of person-centred hearing care throughout Australia. Ennur previously worked as an audiologist with children and older adults at various clinics, where she administered hearing assessments, evaluated patient/family needs and provided rehabilitation.