Identifying Unmet Needs of Families With Children and Youth With Special Health Care Needs in a Preparedness Intervention Connected to the Medical Home

Background

Families with children and youth with special health care needs (CYSHCN)—especially those with complex or multiple morbidities—have additional considerations when planning for emergencies. These families can also have health-related social needs that make achieving household emergency preparedness especially challenging. Our objective was to identify and address the unmet social needs and emergency preparedness needs in a diverse sample of families of CYSHCN recruited from a network of medical homes across Pennsylvania as part of a home-focused, virtual emergency preparedness intervention.

Methods

The study spanned April 2020 to June 2022 and included (1) two sequential CYSHCN-focused interviews addressing medical needs, household emergency preparedness and health-related social needs; (2) core materials on emergency planning and local resources and (3) individualized referrals for unmet needs identified in either interview that were addressed and followed by the medical home team and community partners. Needs identified in the interviews were aggregated, reviewed, inductively categorized and counted sample-wide, per-participant and within sociodemographic subgroups.

Results

Of the 170 participants who completed the first interview, 148 (87%) also completed the second. The CYSHCN in the study (n = 170) had reliance on medical equipment (68%), physical mobility needs (48%), intellectual/communication challenges (79%) and/or vision or hearing loss (36%). Health-related social needs were prevalent and included food insecurity (20%) and housing instability (8%). Sample-wide, 1072 unmet needs were identified and addressed through referrals; 279 of these pertained to emergency preparedness. Other unmet needs fell into each of the Healthy People 2030 Social Determinants of Health domains, mainly Health Care Access and Quality (558 needs; 52%). The sample averaged six unmet needs per participant (median, 5; range, 0–27), and those in the following groups had disproportionately more unmet needs: non–English language speakers, renters, unemployed participants, those with CYSHCN with > 2 comorbidities and participants living with another individual with a disability.

Conclusion

Families with CYSHCN experience wide-ranging unmet medical, social and emergency preparedness needs. Our findings suggest that the medical home team may support these crucial areas by incorporating social-needs screening and referrals into an emergency preparedness intervention.