COVID-19 effects on children who are deaf or hard of hearing and their families: Rapid and rigorous mixed-methods research to inform care

PROJECT SUMMARY/ABSTRACTCOVID-19 has unleashed a sudden and sustained disruption to usual healthcare and social milieu in theUnited States, and of particular concern are deaf/hard of hearing (DHH) children who rely on hearinghealthcare and ancillary services for access to auditory language and other supports. Parents of DHH childrenexperience psychosocial pressures even in the best of times, including social isolation, parenting struggles,and stress, all in the broader context of social determinants of health. These challenges have been com-pounded by the spread of COVID-19 which has limited in-person contacts outside the home, including accessto hearing, speech, and language services. A swift response to this public health crisis is essential to informprovision of services to DHH children and their families in the context of ongoing shifts in the social/healthcarelandscape. We will rapidly assess and disseminate timely information about COVID-19's effects on DHH chil-dren and their families. In Aim 1, we will assess DHH child, parent, and family quality of life (QOL), as well ashearing healthcare access and use during the first 10 months of this global pandemic. We will survey parentsof DHH children twice, six months apart, using the recently developed COVID-19 Exposure and Family ImpactSurvey (CEFIS) and other measures. Our analyses will identify characteristics of DHH children and familiesmost negatively impacted by COVID-19. Following each survey wave, we will conduct rapid content analysis ofkey informant interviews with parents reporting better and worse outcomes to obtain deeper insights. In Aim 2,we will assess barriers and facilitators to service provision for DHH children during this public health crisis. Wewill conduct key informant interviews with direct service providers and administrators and use rapid contentanalysis to identify actionable multilevel barriers and facilitators they describe. In Aim 3, we will use a mixed-methods design to integrate our findings at each timepoint, then rapidly disseminate them to stakeholders toinform changes to practice and policy to meet the needs of DHH children and their families. We will use webi-nars, social media, policy briefs, and other modalities most likely to reach a wide array of stakeholders. Im-portantly, our research questions were developed with our Community Advisory Board (CAB), which guidesour ongoing NIDCD-funded R01. The CAB includes parents, direct service providers, and administrators whoare in key positions in state and local agencies and organizations across Kentucky, maximizing the chancesthat our results will influence policies and services responsive to the needs of our target population. This studyis significant because it assesses the effects of COVID-19 on DHH children and their families using a rapid butrigorous approach. It is innovative as one of the first studies to assess the effects of COVID-19 on families withDHH children, a particularly vulnerable and often underrecognized population. Our results will impact the fieldby demonstrating a rapid community-engaged research response to a public health crisis, and by strategicallydisseminating findings in a timely manner to prioritize the needs of DHH children and their families.