Date Presented 04/01/2022
This study used a mixed-methods approach to explore how the coronavirus disease 2019 (COVID-19) pandemic affected the well-being of 37 Latinx caregivers of children with developmental disabilities. Perceived social support, family income, and receipt of financial benefits were associated with caregiver depressive symptoms. Most caregivers reported that the pandemic had placed a strain on their economic situation, increased their isolation, and disrupted their child’s therapeutic supports, online education, and routines.
Primary Author and Speaker: Jasmine Brown-Hollie
Contributing Authors: Mansha Mirza, Yolanda Suarez-Balcazar, Vanessa Errisuriz, Weiwen Zang, Nazanin Hyderian, Deborah Parra-Medina, Paula Morales, Hilda Torres, Sandy Magana, Sarah Camillone, Estefania Garcia Gomez
BACKGROUND: The COVID-19 pandemic has exacerbated underlying health disparities with some communities being significantly more affected than others. For example, Latinx families with children with developmental disabilities (I/DD) are vulnerable to COVID-19-related life changes compounded by the intersections of race, ethnicity, and disability status.
PURPOSE: The overall aim of this study was to explore how the COVID-19 pandemic and related restrictions have affected the routines of Latinx families and children with I/DD. Specific research questions included: 1) Which social determinants of health are associated with maternal caregivers’ perceived general health, mental health, and well-being? 2) What are the impacts of the COVID-19 pandemic on these families’ daily routines?
DESIGN: A cross-sectional mixed methods survey was conducted as part of a larger study on health and health behaviors of Latinx children with I/DD and their family caregivers using community-engaged research methods.
METHOD: Researchers recruited maternal caregiver-child dyads through a number of community agencies located in two sites in the United States: The Greater Austin and Chicago areas, major cities in Texas and Illinois, respectively. Community Advisory Boards (CAB) at each site assisted with recruitment and provided ongoing input to the research team. Data were collected in three separate phone or Zoom interviews which included open and close-ended questions and were spread over 4-6 weeks, each interview lasting 60-75 minutes. Interviews were conducted by trained bilingual research assistants. Variables of interest included caregiver health, caregiver mental health, perceived social support, food security, changes in household income and family routines. Quantitative data were analyzed through bivariate correlations and multiple linear regression models for each outcome variable. Qualitative data were analyzed using a deductive analytical approach.
RESULTS:
37 families completed the study with an average age of 44 years for caregivers and 11.5 years for children. 70% families reported at least one negative economic change; 90% reported changes in eating and physical activity routines. 54% children were able to maintain access to 2 of 3 service categories (i.e., online special education, routine therapies, and IDD-related services), while 19% had access to all three. On average, caregivers reported “Good” (46%) or “Fair” (32%) perceived health and a moderate level of energy/fatigue; and moderately high overall depressive symptoms with 36% at risk of having depression. Greater perceived social support and receiving a financial benefit were associated with more energy and fewer depressive symptoms. Conversely, low food security was related to more depressive symptoms. Higher annual family income (i.e., ≥ $35,000 USD) was associated with better perceived general health, and fewer depressive symptoms. Qualitative themes indicated that families identified both concerns (e.g., loss of in-person therapies) and opportunities (e.g., working on developmental skills at home) related to the pandemic. Access to community-resources and social supports appeared to influence how families were balancing concerns with opportunities as they navigated their daily lives and routines.
CONCLUSION: Latinx families of children with I/DD experienced significant changes in family routines with potential impact on wellbeing of caregivers. Substantial disruptions in family finances and in educational and therapeutic services exacerbated caregiver stress. There is a need for mental health and social supports for this group. Occupational therapists can play an important role in helping families find community resources and adapt to changes in routines during crises.
References
1. Padilla, C.M. & Thompson, D. (2021). More than One in Four Latino and Black Households with Children Are Experiencing Three or More Hardships during COVID-19. Child Trends. Available at: https://www.childtrends.org/publications/more-than-one-in-four-latino-and-black-households-with-children-are-experiencing-three-or-more-hardships-during-covid-19
2. FAIR Health Inc. Risk Factors for COVID-19 Mortality among Privately Insured Patients. A claims data analysis. A FAIR Health White Paper in Collaboration with the West Health Institute and Marty Makary, MD, MPH, from Johns Hopkins University School of Medicine, November 11, 2020; https://www.fairhealth.org/publications/whitepapers
3. Constantino, J. N., Sahin, M., Piven, J., Rodgers, R., & Tschida, J. (2020). The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities. The American Journal of Psychiatry, 177(11), 1091–1093.
4. Hooper, M. W., Nápoles, A. M., & Pérez-Stable, E. J. (2020). COVID-19 and racial/ethnic disparities. JAMA, 323(24), 1-2.
