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

Megan Kunze, Douglas Gomez, Eliza C. Glenn, Bonnie Todis, I. Riddle, C. Karns, A. Glang, Laura Lee McIntyre
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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.
养育有发育障碍的幼儿:美国COVID-19大流行期间的经历
高压力事件(如自然灾害、政治动乱、疾病)对儿童和家庭的生活产生重大影响。2019年冠状病毒病(COVID-19)给患有发育障碍的家庭和儿童带来了许多困难,可能会加剧本已加剧的压力。在这项研究中,我们采访了生活在美国的2至8岁DD儿童的母亲(N = 14),了解COVID-19如何影响她们的家庭生活。访谈考察了大流行如何影响(a)他们孩子的教育、治疗和医疗服务,(b)他们的压力和复原力,以及(c)他们作为倡导者、教育者和干预者的父母角色。我们对定性数据的专题分析结果突出了四个领域,这些领域的主题描述了接受采访的母亲所表明的家庭经历。在为残疾幼儿提供有效和合乎道德的早期干预方面,家庭的声音至关重要。根据这些母亲访谈的数据,讨论了以家庭为中心的干预建议,以支持家庭在高压力事件中。由于大流行的长期影响尚不清楚,因此还提出了对未来继续研究高压力经历对DD幼儿及其家庭的影响的建议。
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