Family Support Strategies During the Pandemic: Creating Change for Lasting Effect : The Hearing Journal

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Pandemic Insights

Family Support Strategies During the Pandemic: Creating Change for Lasting Effect

Stone, Sarah

Author Information
doi: 10.1097/01.HJ.0000899312.07983.5c
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The COVID-19 pandemic provided opportunities and challenges to all elements of newborn hearing screening, diagnosis, and intervention, including family support, which is an essential component of the Early Hearing Detection and Intervention (EHDI) system. 1

F1
Figure 1:
Newborn Screening Mandates During the COVID-19 Pandemic. Pandemic insights, family, COVID-19, communication, resources.

In Massachusetts, the impact of SARS-CoV-2 began in February 2020 when birthing hospitals reported to the Massachusetts EHDI program that early discharges were being increasingly requested. Completing two hearing screenings as recommended prior to discharge was challenging with the accelerated timeline. To address the risk of early discharge without a hearing screening, the Massachusetts EHDI program collaborated with other screening programs at the Department of Public Health (DPH) and created a graphic for birth hospitals describing the screening mandates. This graphic, shown in Figure 1, was distributed to all birthing hospitals via email, social media, and included on the Massachusetts DPH website guidance for hospitals.

Policies 2 were temporarily put into place to allow for extended timelines and consideration of outpatient hearing screenings.

CONSISTENT COMMUNICATION IS KEY

Telephone outreach efforts to families whose babies either missed or referred their hearing screen were more effective during this time compared with previous experience. Completion rates of phone calls to families hovered at 70% during the early months of the pandemic, when families were more likely to be home. As the months continued, completion rates returned to more typical percentages.

Of the 40 audiological diagnostic centers in Massachusetts, only 7 remained open throughout the pandemic for testing of newborns referred from a hearing screening. Most centers were temporarily closed between March and August 2020. Centers that remained open were only testing babies who referred in both ears or had a high-level risk indicator. Babies who met those criteria were able to be seen well within the three-week protocol. Although Massachusetts is a small state geographically, the eastern part of the state was more heavily impacted at the start of the pandemic, while the western part of the state did not see the same level of service disruption.

Consistent messaging to families was key to the success in communicating the importance of follow-up from a newborn hearing screen referral. To this end, communication with families and providers intensified. An audiologist from Clarke Schools for Hearing and Speech collaborated with Massachusetts EHDI to develop a video for the program’s Facebook page 3 describing what parents could expect at their audiology appointment, including: changes to check-in procedures, what personal protective equipment (PPE) parents and children should be prepared to see on their provider, information about sanitizing and masking requirements, and other topics to help get the family ready for the appointment.

Families who have children with reduced hearing have had added stressors and different support needs during the pandemic, compared with other families. Additional concerns related to the pandemic and rapid changes to service delivery and programs caused further confusion for families. In-person services became virtual, and caregivers of children of all ages were learning, alongside many of their providers, how to navigate the new environment.

NEW RESOURCES

Supporting families is a cornerstone of the Massachusetts EHDI program and drives daily activities and program planning. To address rapidly changing family needs, program changes were incorporated.

The Massachusetts EHDI program partnered with a nonprofit organization to survey parents and caregivers to help prioritize needs. A vetted online resource for families was developed. 4

Informational videos were created with partner programs to provide information and describe resource changes. These videos were hosted by the Massachusetts EHDI program on ‘Facebook Live’ and are available on the program’s Facebook page. 3 Topics presented in these videos were targeted to parents. Social media efforts were expanded and allowed wide distribution of developed materials.

Parent-to-parent calls were regularly scheduled to provide safe and informative places for caregivers to learn from invited experts and from one another. These calls were led by parents on staff at Massachusetts EHDI and held on the Zoom platform, for ease of use with ASL interpreters and captioning. Calls were held on weekday evenings. Caregivers were encouraged to participate in the way that was most comfortable to them; utilizing a camera was not required, although most did. Sessions were not recorded, to ensure privacy of the families. These opportunities were held monthly. Topics included experience with clear masks and availability of captioning for school aged children, including input from students themselves. Providers covered educational considerations including assistive technology and distributed resources to families to share with their child’s educational team. Follow-up emails were sent to participants that included links to resources shared. Families and providers exchanged tips for remote services in early intervention and gained knowledge from each other.

Social opportunities were also provided virtually. A published author/illustrator and their deaf child led a group of deaf children in art activities. The Massachusetts EHDI program also collaborated with the Boston Children’s Hospital Deaf and Hard of Hearing Program and their Middle School Group to offer literacy events in which middle schoolers read or signed a book of their choosing to younger children.

Before the pandemic, in-person learning and social opportunities were met with varying attendance levels. Social opportunities were attended at higher rates than learning opportunities. Hosting learning opportunities in a virtual environment during the pandemic increased attendance. All regions in the state were represented, and families with younger children participated at a higher level.

Virtual events were limited to one hour in length and offered more frequently than the traditional half-day gatherings previously offered by Massachusetts EHDI. Topics included an overview of services available from the Massachusetts Commission on the Deaf and Hard of Hearing Children’s Specialists, family rights and disability law, and an overview of educational service guidelines for deaf and hard of hearing children. 5 For in-person learning opportunities, stipends are customarily provided to families to cover the cost of childcare and travel. Virtual events alleviate travel time and the need to secure childcare, so stipends were not provided.

STAYING FLEXIBLE

As restrictions that necessitated the move to virtual programming for families with children with reduced hearing have been lifted, the Massachusetts EHDI program continues to offer a mix of in-person and virtual events. The benefits of increased participation and the ability to readily provide accessible content virtually allows greater reach of EHDI activities. In-person offerings remain valuable, particularly to promote social interactions between families with deaf and hard-of-hearing children. The Massachusetts EHDI program firmly places the needs of families at the forefront of program planning and continues to foster authentic connections with families. Program activities will remain flexible and provide families with opportunities to participate in meaningful ways, whether in-person or virtual.

REFERENCES

1. National Center for Hearing Assessment and Management, National Technical Resource Center, Early Hearing Detection and Intervention 2021 Retrieved from NCHAM: Culturally Competent Family Support for Families Who Have a Deaf or Hard of Hearing Child (infanthearing.org)
2. COVID-19 Public Health Guidance and Directives 2022 Retrieved from https://www.mass.gov/info-details/covid-19-public-health-guidance-and-directives
3. Massachusetts Universal Newborn Hearing Screening Program 2022 Retrieved from https://www.facebook.com/MassNewbornHearingScreening
4. Remote Learning Resources 2022 Retrieved from https://www.decibelsfoundation.org/what_we_do/remote-learning-resources.html
5. Optimizing Outcomes for Students who are Deaf or Hard of Hearing 2021 Retrieved from https://www.youtube.com/watch?app=desktop&v=SB9ZFPNyJBE
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