Parenting young children with developmental disabilities: Experiences during the COVID-19 pandemic in the U.S.


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Authors

DOI:

https://doi.org/10.37291/2717638X.202342264

Keywords:

Parenting, Early intervention, Early childhood special education, Developmental delays disabilities, COVID-19, Qualitative methods

Abstract

High-stress events (e.g., natural disasters, political unrest, disease) significantly impact the lives of children and families. The Coronavirus Disease 2019 (COVID-19) is one event that has brought numerous hardships to families and children with developmental disabilities (DD), likely exacerbating already heightened levels of stress. For this study, we interviewed mothers living in the U.S. (N = 14) of 2- to 8-year-old children with DD about how COVID-19 has affected their family life. The interviews examined how the pandemic impacted (a) their child’s educational, therapeutic, and medical services, (b) their stress and resiliency, and (c) their parenting role as an advocate, educator, and interventionist. The results of our thematic analysis of the qualitative data highlight four domains with themes that describe families’ experiences as indicated by the mothers interviewed. Voices of families are essential in the delivery of effective and ethical early intervention for young children with disabilities. Based on the data from these interviews with mothers, suggestions for family-focused intervention to support families during high-stress events are discussed. As the long-term effects of the pandemic remain unknown, suggestions for future research to continue to examine the impact of high-stress experiences on young children with DD and their families are also presented.

References

Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2021). How is COVID-19 affecting the mental health of children with special educational needs and disabilities and their families?. Journal of autism and developmental disorders, 51(5), 1772-1780. DOI: https://doi.org/10.1007/s10803-020-04577-2

Bentenuto, A., Mazzoni, N., Giannotti, M., Venuti, P., & de Falco, S. (2021). Psychological impact of Covid-19 pandemic in Italian families of children with neurodevelopmental disorders. Research in Developmental Disabilities, 109, 103840. DOI: https://doi.org/10.1016/j.ridd.2020.103840

Bhaskar, R. (1989). The possibility of naturalism (2nd ed.). Harvester Wheatsheaf.

Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71(2), 195-207. DOI: https://doi.org/10.1177/001440290507100205

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. DOI: https://doi.org/10.1191/1478088706qp063oa

Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. Sage.

Braun, V., & Clarke, V. (2020). One size fits all? What counts as quality practice in (reflexive) thematic analysis?. Qualitative Research in Psychology, 21(3), 328-352. DOI: https://doi.org/10.1080/14780887.2020.1769238

Bricker, D. D., Felimban, H. S., Lin, F. Y., Stegenga, S. M., & Storie, S. O. M. (2020). A proposed framework for enhancing collaboration in early intervention/early childhood special education. Topics in Early Childhood Special Education, 41(4), 240–252. DOI: https://doi.org/10.1177/0271121419890683

Bronfenbrenner, U. (1979). The ecology of human development. Harvard University Press.

Chen, C. Y. C., Byrne, E., & Vélez, T. (2021). Impact of the 2020 pandemic of COVID-19 on Families with school-aged children in the United States: Roles of income level and race. Journal of Family Issues, 43(3), 719–740. DOI: https://doi.org/10.1177/0192513X21994153

Conti-Ramsden, G., & Durkin, K. (2012). Language development and assessment in the preschool period. Neuropsychology Review, 22(4), 384-401. DOI: https://doi.org/10.1007/s11065-012-9208-z

Cooke, J. E., Eirich, R., Racine, N., & Madigan, S. (2020). Prevalence of posttraumatic and general psychological stress during COVID-19: A rapid review and meta-analysis. Psychiatry Research, 292, 113347. DOI: https://doi.org/10.1016/j.psychres.2020.113347

Dedoose. (2019). Web application for managing, analyzing, and presenting qualitative and mixed method research data internet. SocioCultural Research Consultants.

Estes, A., Swain, D. M., & MacDuffie, K. E. (2019) The effects of early autism intervention on parents and family adaptive functioning. Pediatric Medicine, 2(21). DOI: https://doi.org/10.21037/pm.2019.05.05

Fletcher, A. J. (2017). Applying critical realism in qualitative research: Methodology meets method. International Journal of Social Research Methodology, 20(2), 181-194. DOI: https://doi.org/10.1080/13645579.2016.1144401

Gomez, D., Kunze, M., Glenn, E., Todis, B., Kelley, K., Karns, C. M., Glang, A., & McIntyre, L. L. (2022). Professionals’ perspectives on service delivery: The impact of COVID-19 on early childhood special education providers. Topics in Early Childhood Special Education, 1-11. DOI: https://doi.org/10.1177/02711214211073964

Gonçalves-Pinho, M., Mota, P., Ribeiro, J., Macedo, S., & Freitas, A. (2021). The impact of COVID-19 pandemic on psychiatric emergency department visits–a descriptive study. Psychiatric Quarterly, 92(2), 621-631. DOI: https://doi.org/10.1007/s11126-020-09837-z

Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough?: An experiment with data saturation and variability. Field Methods, 18(1), 59-82. DOI: https://doi.org/10.1177/1525822X05279903

Guralnick, M. J. (1997). Effectiveness of early intervention for vulnerable children: A developmental perspective. American Journal on Mental Retardation, 102(4), 319-345. DOI: https://doi.org/10.1352/0895-8017(1998)102<0319:EOEIFV>2.0.CO;2

Hochman, Y., Shpigelman, C., Holler, R., & Werner, S. (2022). “Together in a pressure cooker”: Parenting children with disabilities during the COVID-19 lockdown. Disability and Health Journal, 15(3), 101273. DOI: https://doi.org/10.1016/j.dhjo.2022.101273

Howard-Jones, A. R., Bowen, A.C., Danchin, M., Koirala, A., Sharma, K., Yeoh, D. K., Burgner, D. P., Crawford, N.W., Goeman, E., Gray, P. E., Hsu, P., Kuek, S., McMullan, B. J., Tosif, S., Wurzel, D. & Britton, P. N. (2022). COVID-19 in children: I. Epidemiology, prevention and indirect impacts. Journal of Pediatrics and Child Health, 58, 39-45. DOI: https://doi.org/10.1111/jpc.15791

Iacob, C. I., Avram, E., Cojocaru, D., & Podina, I. R. (2020). Resilience in familial caregivers of children with developmental disabilities: a meta-analysis. Journal of autism and developmental disorders, 50(11), 4053-4068. DOI: https://doi.org/10.1007/s10803-020-04473-9

Jeste, S., Hyde, C., Distefano, C., Halladay, A., Ray, S., Porath, M., Wilson, R., & Thurm, A. (2020). Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID‐19 restrictions. Journal of Intellectual Disability Research, 64(11), 825-833. DOI: https://doi.org/10.1111/jir.12776

Kunze, M. & McIntyre, L. L. (2021). Will programs be prepared to teach young children at-risk post-pandemic? A scoping review of early childhood education experiences. In J. Pattnaik, & M. R. Jalongo (Eds.), The impact of COVID-19 on early childhood education and care: International perspectives, challenges, and responses (pp.493-512 ) Springer. DOI: https://doi.org/10.1007/978-3-030-96977-6_25

Kunze, M. G., Machalicek, W., Wei, Q., & St Joseph, S. (2021). Coaching via telehealth: Caregiver-mediated interventions for young children on the waitlist for an autism diagnosis using single-case design. Journal of Clinical Medicine, 10(8), 1654. DOI: https://doi.org/10.3390/jcm10081654

Lerman, D. C., O’Brien, M. J., Neely, L., Call, N. A., Tsami, L., Schieltz, K. M., Berg, W. K., Graber, J., Huang, P., Kopelman, T., & Cooper-Brown, L. J. (2020). Remote coaching of caregivers via telehealth: Challenges and potential solutions. Journal of Behavioral Education, 29(2), 195-221. DOI: https://doi.org/10.1007/s10864-020-09378-2

Manning, J., Billian, J., Matson, J., Allen, C., & Soares, N. (2020). Perceptions of families of individuals with autism spectrum disorder during the COVID-19 Crisis. Journal of Autism and Developmental Disorders, 51(8), 2920–2928. DOI: https://doi.org/10.1007/s10803-020-04760-5

McCormick, K. M., Stricklin, S., Nowak, T. M., & Rous, B. (2008). Using eco-mapping to understand family strengths and resources. Young Exceptioanl Children, 11(2), 17–28. DOI: https://doi.org/10.1177/1096250607311932

McIntyre, L. L., Kunze, M., Barton, H., & Luehring, M. (2021). Early intervention in children with intellectual and developmental disabilities. In L. M. Glidden, L. Abbeduto, L. L. McIntyre, & M. Tassé (Eds.), Handbook of intellectual and developmental disabilities (pp.3-22 ). American Psychological Association. DOI: https://doi.org/10.1037/0000195-001

McWilliam, R. A., Casey, A. M., & Sims, J. (2009). The routines-based interview. A method for gathering information and assessing needs. Infants & Young Children, 22(3), 224-233. DOI: https://doi.org/10.1097/IYC.0b013e3181abe1dd

Nahmias, A. S., Pellecchia, M., Stahmer, A. C., & Mandell, D. S. (2019). Effectiveness of community‐based early intervention for children with autism spectrum disorder: a meta‐analysis. Journal of Child Psychology and Psychiatry, 60(11), 1200-1209. DOI: https://doi.org/10.1111/jcpp.13073

Neece, C. L., Green, S. A., Baker, B. L. (2012). Parenting stress and child behavior problems: A transactional relationship across time. American Journal on Intellectual and Developmental Disabilities,117(1), 48-66. DOI: https://doi.org/10.1352/1944-7558-117.1.48

Neece, C., McIntyre, L. L., & Fenning, R. (2020). Examining the impact of COVID‐19 in ethnically diverse families with young children with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 64(10), 739-749. DOI: https://doi.org/10.1111/jir.12769

Nonweiler, J., Rattray, F., Baulcomb, J., Happé, F., & Absoud, M. (2020). Prevalence and associated factors of emotional and behavioural difficulties during COVID-19 pandemic in children with neurodevelopmental disorders. Children, 7(9), 128. DOI: https://doi.org/10.3390/children7090128

Patrick, S. W., Henkhaus, L. E., Zickafoose, J. S., Lovell, K., Halvorson, A., Loch, S., Letterie, M., & Davis, M. M. (2020). Well-being of parents and children during the COVID-19 pandemic: A National survey. Pediatrics, 146(4), e20200836. DOI: https://doi.org/10.1542/peds.2020-016824

Patterson, J. M. (1991). Family resilience to the challenge of a child's disability. Pediatric annals, 20(9), 491-499. DOI: https://doi.org/10.3928/0090-4481-19910901-08

Poole, M. E., Fettig, A., McKee, R. A., & Gauvreau, A. N. (2020). Inside the virtual visit: Using tele-intervention to support families in early intervention. Young Exceptional Children, 25(1), 3-14. DOI: https://doi.org/10.1177/1096250620948061

Ren, J., Li, X., Chen, S., Chen, S., & Nie, Y. (2020). The influence of factors such as parenting stress and social support on the state anxiety in parents of special needs children during the COVID-19 epidemic. Frontiers in Psychology, 11, 565393. DOI: https://doi.org/10.3389/fpsyg.2020.565393

Rossetti, Z., Burke, M. M., Rios, K., Tovar, J. A., Schraml-Block, K., Rivera, J. I., Cruz, J., & Lee, J. D. (2021). From individual to systemic advocacy: Parents as change agents. Exceptionality, 29(3), 232-247. DOI: https://doi.org/10.1080/09362835.2020.1850456

Schmidt, S. J., Barblan, L. P., Lory, I., & Landolt, M. A. (2021). Age-related effects of the COVID-19 pandemic on mental health of children and adolescents. European Journal of Psychotraumatology, 12(1), 1901407. DOI: https://doi.org/10.1080/20008198.2021.1901407

Taylor, H. G., Yeates, K. O., Wade, S. L., Drotar, D., Stancin, T., & Burant, C. (2001). Bidirectional child-family influences on outcomes of traumatic brain injury in children. Journal of International Neuropsychological Society, 7(6), 755-767. DOI: https://doi.org/10.1017/S1355617701766118

Thorell, L. B., Skoglund, C., de la Peña, A. G., Baeyens, D., Fuermaier, A. B., Groom, M. J., Mammarella, I. C., Van der Oord, S., van den Hoofdakker, B. J., & Luman, M. (2022). Parental experiences of homeschooling during the COVID-19 pandemic: Differences between seven European countries and between children with and without mental health conditions. European Child & Adolescent Psychiatry, 31(4), 649–661. DOI: https://doi.org/10.1007/s00787-020-01706-1

Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. H., Glasser, A., & Veenstra-Vanderweele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127(5), e1303–e1311 DOI: https://doi.org/10.1542/peds.2011-0426

Williams, A. A. & Wright, K. S. (2014). Engaging families through motivational interviewing. Pediatric Clinics of North America, 61(5), 907-921. DOI: https://doi.org/10.1016/j.pcl.2014.06.014

Zwaigenbaum, L., Bauman, M.L., Choueiri, R., Kasari, C., Carter, A.S., Granpeesheh, D., Mailloux, Z., Roley, S.S., Wagner, S., Fein, D., Pierce, K., Buie, T., Davis, P. A., Newschaffer, C., Robins, D., Wetherby, A., Stone, W. L., Yirmiya, N., Estes, A., & Hansen, R. L. et al. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136 (Suppl. S1), S60–S81. DOI: https://doi.org/10.1542/peds.2014-3667E

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Published

2023-07-14

How to Cite

Kunze, M., Gomez, D., Glenn, E., Todis, B., Riddle, I., Karns, C. M., Glang, A., & Lee McIntyre, L. (2023). Parenting young children with developmental disabilities: Experiences during the COVID-19 pandemic in the U.S. Journal of Childhood, Education & Society, 4(2), 156–175. https://doi.org/10.37291/2717638X.202342264