17 Caregiver Mental Health Needs in Caregiver-Mediated Early Intervention
Authors: Lee Cecilia , Brian Jessica , Lunsky Yona , Fung Kenneth , Ashcroft Rachelle , Lerner Rebecca , Penner Melanie 
Published: September 2023

Background

Caregivers of autistic children face high levels of stress and are at risk of developing mental health disorders. Caregivers participating in caregiver-mediated early interventions (CMIs), such as the Social ABCs, where they provide the intervention to their young child, juggle many responsibilities to their child and family, leaving self-care as the last priority. Caregivers may not seek mental health support, though interventions for caregiver stress, such as acceptance and commitment therapy (ACT), exist. This study represents the first step in addressing the gap in mental health supports for caregivers who are participating in CMIs.

Objectives

To understand the mental health needs of caregivers participating in a CMI.

Design/Methods

This study utilized reflexive thematic analysis with a constructivist approach to explore caregivers’ experiences of a CMI, the Social ABCs. Demographic information was collected and semi-structured interviews were conducted with 13 caregivers from the Greater Toronto Area (Ontario, Canada). Interviews were coded and themes were generated from the codes. Themes were revised based on feedback from the research team and member-checking.

Results

Demographic data revealed that participants included mothers and fathers from a range of racial/ethnic backgrounds and from mainly dual-parent households with 1-2 autistic children. Participants of the Social ABCs virtual and in-person group-based and individual formats from 2018-2021 were included. Four central themes derived from this study illustrate the mental health needs of caregivers participating in the Social ABCs, including: social emotional connection, caregiver wellness tied to child’s success, perceived wellness needs and culturally sensitive care (Figure 1). Given the emotional intensity of caregivers’ experiences early in their journey with their young child, social emotional connection refers to the caregiver’s need to connect with other caregivers or professionals with understanding of their experiences in a psychologically safe environment. In navigating supports for their child and early intervention in particular, caregivers may place an overwhelming focus on building their child’s skills. This emphasis on seeing their child progress directly impacts a caregiver’s own wellness, as illustrated by the theme caregiver wellness tied to child’s success. Despite caregivers acknowledging the importance of their own mental health and well-being or their perceived wellness needs, caregivers may prioritize their own wellness needs below the needs of their child and family. The provision of culturally sensitive care was also highlighted as it poses a barrier to accessing wellness supports for already marginalized caregivers.

Conclusion

Caregivers identify a need for culturally sensitive, psychologically safe formal and informal social supports in the context of a CMI. Given the intense focus caregivers may have on supports for their child, clinicians should deliver balanced messaging about the importance of the child’s skill development and caregiver wellness, as there may be bidirectional impacts. Future research on CMI should consider ways to address caregiver mental health needs to optimize overall family functioning.