Parenting Stress, Self-Efficacy and Empowerment in Primary Caregivers of Children with Autism Spectrum Disorder Receiving Ipad-Based Early Intervention: Outcomes from the Toby Trial

Background: A diagnosis of an autism spectrum disorder (ASD) and the start of a range of early and intensive behavioural interventions (EIBI) to ameliorate ASD symptoms in young children are significant life events and potential stressors that can impact on parental stress, satisfaction, self-efficacy, sense of competence and empowerment. The use of technology to complement EIBI may assist caregivers in delivering timely therapy at low cost. However, the impact of any EIBI on parents is limited, so we investigated parent attributes to better understand their needs during EIBI in a bid to develop interventions with parent focused components.

Objectives: As part of an iPad-based early intervention (Therapy Outcomes By You: TOBY) for young children with ASD, this study aimed to investigate the effects of TOBY on perceived parental factors such as 1) parenting stress 2) satisfaction 3) self-efficacy and 4) empowerment among primary caregivers whose children participated in the TOBY randomised controlled trial (RCT). Parental outcomes were assessed at 3 and 6 months post-baseline.

Methods: The TOBY app provides a learning curriculum within which a combination of solo on-screen, partner-on-screen and real world tasks are encouraged and implemented by parents. Children aged 51 months or younger with a clinical diagnosis of ASD (received in the past 12 months) and parents were randomised to the TOBY (>20 mins/day) plus therapy as usual group (TOBY, n = 41) or the control - therapy as usual only (TAU, n = 39) group for 6 months. In addition to children diagnostic, functional and developmental assessments, primary caregivers self-completed the Parenting Stress Index, Parenting Sense of Competence Scale and Family Empowerment Scale at baseline, 3 and 6 months post-intervention.

Results: Primary caregivers (mothers) were 34.38 (SD = 4.74) years of age at baseline. One quarter (23.4%) of all parents reported clinically significant stress scores at baseline. Non-parametric tests were used to examine differences between and within the TOBY and TAU groups due to non-normal distributions. No significant differences between the TOBY and TAU groups emerged. However, primary caregivers within the TOBY group perceived less parental stress at 3-months (Mdn = 86.5) compared to their baseline stress scores (Mdn = 95.5, z = -2.54, p = .011) but their stress scores did not differ significantly at 6 months post intervention (Mdn = 91.5, z = -1.24, p = .212). There were no significant differences within the TOBY group for parenting satisfaction, self-efficacy and empowerment at 3- or 6 month follow up.

Conclusions: Some parents of newly diagnosed children with ASD experience high levels of stress at the start of therapies. A reduction in parenting stress among TOBY parents in the first 3-months was observed but not at 6 months post-intervention. Although this requires exploration, the results suggest parent screenings to determine stress levels with a view to assess clinical needs and services aimed to support parents during early intervention. The findings have implications for future research in EIBI and the development of comprehensive early interventions for ASD with embedded parent support components.