The COVID-19 pandemic drastically changed the lives of many. Beginning in March 2020, many became immediately isolated, experiencing increased stress and anxiety. Parents caring for children of all ages were impacted by these variables the most. It is already known that parenting is a stressful endeavor that is even more difficult for parents of individuals with Autism Spectrum Disorders (ASD) (Phelps, 2009). The health of these caregivers is just as imperative as that of the individual with special needs. A caregiver must be physically and mentally healthy to effectively care for another individual.
The COVID-19 pandemic weighed upon caregivers even more so. School closings imposed routine changes and sparked anxiety in individuals with ASD (Factor et al., 2016; van Steensel & Heeman, 2017).Caregivers of children with special needs reported that the changes they experienced when schools were closed during COVID-19 had a negative effect on their own mental health as well as the mental health of their child (Asbury et al., 2020). These caregivers have significant concern about their ability to home school their children, as these children often require complex educational support from a team of trained educational professionals (Toseeb et al., 2020). Greater levels of parental stress during COVID-19 were mainly linked to child behavioral characteristics rather than parental sense of competence in parents of children affected by a disability in comparison to children with typical development (Siracusano et al., 2021). The study’s findings emphasize the need to support not only individuals with special needs but also their own caregivers. Results of a study investigating the influence of parental stress, social support, and other related variables on the anxiety of parents during the pandemic show that these caregivers suffered mental and behavioral problems, together parenting stress and social support, which influenced their anxiety (Ren et al., 2020) The results of this study encourage the development of psychological interventions to improve the mental health of this caregiver population (Ren et al., 2020).
The literature review suggests that parents best learn the information they need to cope with the emotional challenges of raising a child with special needs with support from other parents with children with special needs. Online social support has been shown to be especially supportive in recent years (DeHoff et al., 2016). Other literature suggests formal and informal support are beneficial in decreasing stress for parents of children with special needs, however, few studies have also indicated that formal support may add stress to caregivers (Ault et al., 2021).
As a veteran special education teacher having completed my dissertation study on the well-being of caregivers, my heart ached for these families. Together with my colleague, Alley Mayernick, BCBA, we founded Helping Hands for Exceptional Families, A Virtual Initiative, which was started in order to help alleviate the increased difficulty that caregivers of children with special needs may be facing during the pandemic. As a behavioral therapist and a special educator, we have extensive backgrounds working with individuals in the home, community, and educational setting. We conducted a needs assessment to better understand the challenges. On the electronic survey, the following services were offered as options (all virtual):
- At-Home Activity Lists/Sensory Break Ideas
- Social Interaction (1:1 or Group)
- Locating Preferred Items
- Picture Schedule
- Social Story
- Parent/Caregiver Meet up (1:1 or Group)
- Parent Training
After analysis of the needs assessment, we decided to offer the following complimentary services:
- At-Home Activity Lists/ Sensory Break Ideas
- Social Interaction (1:1 and Group)
- Parent/Caregiver Meet Up (1:1 and Group)
The most popular services were the parent group meetings and social groups. During social groups, individuals were grouped together and the cofounders of the company facilitated games such as Wheel of Fortune, Trivia, Bingo, and other games. During parent meet-ups, the conversations were initiated by the cofounders. However, parents mostly used the virtual space to find commonalities and lean on one another for social support. Although the cofounders did offer advice for challenging behaviors/ problems that may arise in the household when directly asked, parents were also comfortable in sharing their own ideas and support. Caregivers even continued to host meetings when the cofounders were not available or no longer offered the services. Cofounders purposefully tried to facilitate a more informal structure, allowing caregivers to speak freely but just providing the actual virtual space for caregivers to meet and exchange information. For this particular initiative, caregivers from all over the United States were invited to attend through Facebook. Ultimately parents from New York, Illinois, Pennsylvania, Georgia, Texas, Connecticut, Florida, and New Jersey regularly participated
Upon analysis of our services, while virtual meet-ups were desirable during the COVID-19 pandemic, they remain a good option for parents who are busy and may not have an alternative caregiver to watch their child. Virtual meet-ups allow caregiver couples to join and allow everyone to feel comfortable in their own home. Formal structures are necessary, as they allow caregivers to find a mutual safe meeting spot. However, it has been found to be most effective if these formal structures dissolve once the meeting is in progress. After a few weeks, when caregivers get comfortable with one another, it is beneficial if the facilitator drops back and allows caregivers to exchange information and set up their own meetings to continue without the facilitator. It is my hope that more programs consider the structural stress that they may place on caregivers and help facilitate only until caregivers feel comfortable hosting the group themselves. On a virtual platform, space is free, and the pressure of hosting duties is non-existent. I hope to further examine the formal and informal structures of caregiver groups in hopes of implementing social support that will be most effective in decreasing caregiver stress, strain, and increasing quality of life.
Alyssa SooHoo, PhD, is an Assistant Professor at St. Joseph’s College in Patchogue, New York. She can be reached at asoohoo@sjcny.edu.
References
Ault, S.; Breitenstein, M.; Tucker, S.; Havercamp, S.; & Ford, J.L. (2021).Caregivers of children with autism spectrum disorder in rural areas: A literature review of mental health and social support.Journal of Pediatric Nursing, 61, 229-239.
Asbury, K., Fox, L., Deniz, E., Code, A., & Toseeb, U. (2020). How is COVID-19 affecting the mental health of children with Special Educational Needs and Disabilities and their families? PsyArXiv Preprints.
Factor, R. S., Condy, E. E., Farley, J. P., & Scarpa, A. (2016). Brief report: insistence on sameness, anxiety, and social motivation in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(7), 2548-2554.
Ren J, Li X, Chen S, Chen S and 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. Front. Psychol. 11.
Siracusano, M.; Riccioni, A.; Gialloreti, L.E.; Segatori, E.; Arturi, L.; Vasta, M.; Porfirio, M.C.;
Terribili, M.; Galasso, C.; Mazzone, L. Parental Stress and Disability in Offspring: A Snapshot during the COVID-19 Pandemic. Brain Sci. 2021, 11, 1040.
Toseeb, U., Asbury, K., Code, A., Fox, L., & Deniz, E. (2020, April 21). Supporting Families With Children with Special Educational Needs and Disabilities During COVID-19.
Van Steensel, F. J. A., & Heeman, E. J. (2017). Anxiety Levels in Children with Autism Spectrum Disorder: A Meta-Analysis. J Child Fam Stud, 26(7), 1753-1767.
