Minimum Data Set for Families of Children With Hearing Loss: An eDelphi Study

Abstract

Purpose: Assessing the unique needs of each family following the diagnosis of a hearing loss is central to the delivery of family-centered hearing health care. Therefore, the aim of this study was to develop a Minimum Data Set (MDS) that could be used in the design of a needs assessment tool for families of children with hearing loss transitioning to early intervention. Method: A list of potential items for the MDS was prepared. In a two-round electronic Delphi study in Australia, hearing researchers ( N = 15 in Round 1; N = 9 in Round 2), clinicians, and professionals working in early intervention for children with hearing loss ( N = 85) were asked to review the potential items and to rate the importance of items using a Likert scale. Results: Consensus was reached on 32 main items to be included in the MDS across six categories, including informational support (13 items), professional support (five items), peer support (one item), skills and knowledge (seven items), financial support (three items), and methods of information provision (three items). Eight optional items that could be considered for inclusion in the MDS were also identified. Conclusions: The proposed MDS could support hearing professionals in identifying families' needs in order to provide individualized information and support. Future research is needed to conduct a pilot study to evaluate the needs assessment tool in terms of usability, feasibility, and therapeutic effects.