Mrs Mansoureh Nickbakht1, Dr Carly Meyer1,2, Dr Nerina Scarinci1,2, Dr Rachael Beswick3
1School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia,, Australia,
2The HEARing Cooperative Research Centre, Melbourne,, Australia,
3Children’s Health Queensland Hospital and Health Service, Healthy Hearing, Brisbane,, Australia
The transition period from diagnosis of hearing loss (HL) to enrolment in early intervention is one of the most critical periods in which families require support. While the majority of families do not have prior knowledge about HL, they are required to make a number of important decisions about choice of hearing devices and early habilitation, and the type of communication approach. In the first qualitative phase of this project, we explored families’ needs during the transition period, and found that families wanted individualised informational, professional, and peer support. Some families also reported feeling overwhelmed by the volume of information they received, as well as some inconsistencies in provision of information. The assessment of the unique needs of each family following the diagnosis of HL is central to delivery of family-centred hearing healthcare. The aim of this study was, therefore, to develop a minimum data set (MDS) for a needs assessment for families of children with HL transitioning to early intervention.
A list of potential items for the MDS was prepared based on the information provided by families and professionals in the first phase and a literature review. In a two-round eDelphi study, hearing healthcare researchers (n = 15 in Round 1; n = 9 in Round 2) and clinicians and professionals working in early intervention for children with HL (n = 85) were asked to review the potential items for the MDS and to rate the importance of each item using a 9-point Likert Scale.
Consensus was reached on 32 items to be included in the MDS across 6 categories, including informational support, professional support, peer support, skills and knowledge, financial support, and methods of information provision. The proposed MDS could support hearing professionals to identify families’ needs in order to provide individualised information and services.
Mansoureh has a Bachelor’s degree in audiology and a Master’s degree in “Rehabilitation Administration.” She has 12 years of experience working as an audiologist in hospitals, private practice and as a Clinical Educator. She has recently finished her PhD at The University of Queensland. Her research focuses on family-centred care for children with hearing loss.