Experiences of Mothers Parenting Autistic Children During COVID-19

PURPOSE: This study aimed to explore and understand how parenting occupations for mothers of autistic children have changed due to the novel COVID-19 virus. We examine the effects of stay-at-home orders, quarantine, and COVID-19 on parents of autistic children). Scientists have identified the impact of COVID-19 on parents, including stress, lack of sleep, and energy burnout (Griffith 2020, Liu & Doan, 2020). But little research has been done on specific areas of interest, such as families of autistic children. This study is important for occupational therapists working with families trying to understand the influences of COVID-19. Our research question is-How has COVID-19 influenced the experiences of occupations for parents of autistic children?

DESIGN: This study used a qualitative narrative research-based design following the interpretive paradigm. The research participants included three mothers who have a child diagnosed with ASD recruited primarily through personal networks. Criteria for this study required being a parent of an autistic child during the COVID-19 pandemic.

METHOD: Each mother (n=3) participated in one interview consisting of semi-structured questions. Interviews were recorded and transcribed for further analysis. Transcriptions were coded using an iterative, constantly developing a process that included all three researchers. We used a narrative approach, analyzing stories to identify themes within and across cases (See Bonsall 2012).

RESULTS: We identified five themes within the research. Health Concerns consisted of balancing the needs of keeping their immediate and extended families safe with their child’s needs. Lost occupations include a lack of school services and the influence losing previous occupations had on children and parents. Changes in Routines and Responsibilities include changes in parents’ responsibilities and children’s established routines. Complex family relationship changes include increased contact for some family members but an increased need to be vigilant to ‘meltdowns’ for others. Stressors included work, school, and behavior difficulties, while supports included family support and available services for children.

CONCLUSION: This study found a change in parenting occupations, including additional responsibilities and changes to daily routines. The importance of parental support and services for autistic children was highlighted throughout the study. While the parents described increased stress levels, they also identified both positive and negative changes in family dynamics as they struggled to adapt to the changes in their lives. Changes in responsibilities highlight the constantly shifting nature of families and parenting responsibilities in response to everyday contexts.

IMPACT STATEMENT: This study provides practicing occupational therapists insight into mothers’ experiences parenting autistic children. Loss of social support and occupations for both parents and children points to the importance of therapists addressing parental needs within family-centered care.

References

Bonsall, A. (2012). An examination of the pairing between narrative and occupational science. Scandinavian Journal of Occupational Therapy, 19, 92–103. https://doi.org/10.3109/11038128.2011.552119

Griffith, A. K. (2020). Parental burnout and child maltreatment during the covid-19 pandemic. Journal of Family Violence, 1–7. https://doi.org/10.1007/s10896-020-00172-2

Liu, C. H., & Doan, S. N. (2020). Psychosocial stress contagion in children and families during the COVID-19 pandemic. Clinical Pediatrics, 59(9/10), 853–855. https://doi.org/10.1177/0009922820927044