Nurturing Grandchildren With Down Syndrome: A Qualitative Study on Grandparents' Needs Using Digital Tools†.

Grandparents who have grandchildren with disabilities are an underrepresented group in existing research related to the field. This qualitative phenomenological study's general purpose is to analyze, from a personal perspective, the situations and needs of grandparents who have grandchildren with Down syndrome. The participants' ages range from 65 to 85, and the ages of their grandchildren with Down syndrome range from 3 to 21 years. All participants had one grandchild with a disability, except for two, who each had two. A sociodemographic questionnaire was administered, and individual interviews were conducted, using open questions, through phone and/or video calls. An analysis of the participants' speech was carried out, which implied the development of a system of meta-categories and categories. This analysis was developed manually, given the COVID-19 environment. The results indicate a substantial change from negative feelings caused by the knowledge of the diagnosis to feelings related to positive experiences expressed currently. The participants see themselves as a fundamental source of support (informal, instrumental, practical, social, emotional, and economic) for their families and, mainly, for their grandchildren with Down syndrome. A need for information and training was observed when the grandparents talked about first being informed of the diagnosis and their concerns about the future of these grandchildren and their siblings. They made social demands, such as greater government involvement or more significant opportunities to access resources and rights for their grandchildren. The results are discussed, as are possible future research directions.

Audiologist Perception on Reporting Hearing Assessment Results to State Early Hearing Detection and Intervention Programs.

Purpose: To describe an evaluation conducted by 39 state Early Hearing Detection and Intervention (EHDI) programs on the reporting process and system usability for audiologists when reporting the hearing test results to the EHDI program and the barriers encountered during reporting. Method: Each author independently extracted numbers, percentages, and texts from the evaluation reports into an Excel spreadsheet, which then became the dataset. Authors then compared and cross-checked the datasets before coding. Texts conveying similar concepts were coded with the same name and organized into categories. Finally, thematic identification and analysis were performed when a theme(s) or concept(s) that pertained to similar challenges encountered by audiologists was identified and organized under a higher-order domain. Results: Some audiologists reported no barriers when reporting hearing test results to the state EHDI programs. Among those audiologists who reported barriers, the most recurrent barrier was a non-user-friendly data system design. The second most recurrent barrier was not having adequate administrative time to report data as a busy clinician. The third most recurrent barrier was an incomplete understanding of the state EHDI reporting requirements. Finally, the method audiologists were required to use when reporting results also posed some challenges, such as no internet connection in rural areas when required to report via an internet portal. Conclusion: Because of the wide variety of barriers faced by audiologists, multiple strategies to improve the reporting process would likely be beneficial.

Evaluating Data Quality of Newborn Hearing Screening.

SCOPE: Jurisdictional-based Early Hearing Detection and Intervention Information Systems (EHDI-IS) collect data on the hearing screening and follow-up status of infants across the United States. These systems serve as tools that assist EHDI programs' staff and partners in their tracking activities and provide a variety of data reports to help ensure that all children who are deaf/hard of hearing (DHH) are identified early and receive recommended intervention services. The quality and timeliness of the data collected with these systems are crucial to effectively meeting these goals. METHODOLOGY: Forty-eight EHDI programs, funded by the Centers for Disease Control and Prevention (CDC), successfully evaluated the accuracy, completeness, uniqueness, and timeliness of the hearing screening data as well as the acceptability (i.e., willingness to report) of the EHDI-IS among data reporters (2013-2016). This article describes the evaluations conducted and presents the findings from these evaluation activities. CONCLUSIONS: Most state EHDI programs are receiving newborn hearing screening results from hospitals and birthing facilities in a consistent way and data reporters are willing to report according to established protocols. However, additional efforts are needed to improve the accuracy and completeness of reported demographic data, results from infants transferred from other hospitals, and results from infants admitted to the Neonatal Intensive Care Unit.