The feasibility and acceptability of a stigma protection intervention designed to improve the mental health of parents and carers of autistic children

Abstract

Background: Stigma is prominent in the lives of autistic children and their families, and a systematic literature review found that autism-related stigma contributes significantly to poorer mental health among parents. Parents are also at risk of internalising the stigma directed at their child, which further exacerbates poor well-being. Interventions that focus on the mental health of parents of autistic children are sparse, and there are currently no interventions available that help parents cope with autism-related stigma as well as prevent the internalisation of stigma. An intervention that is evidenced to improve mental health in part through increasing resistance to stigma will be of substantial benefit to families and, ultimately, their children. Purpose: The primary aim of this study was to develop a stigma protection intervention aiming to improve the mental health of parents of autistic children, and to evaluate its feasibility and acceptability. The secondary aim was to explore the preliminary impact of the intervention on the mental health of the parents. Methods: The Medical Research Council’s guidelines for developing complex interventions were used as a framework for the research. Evidence from multiple sources was synthesised to produce an eight week blended (face-to-face and online) psychosocial intervention titled ‘SOLACE’. A randomised controlled trial was carried out comparing parents allocated to the SOLACE group (n=9) with those allocated to a control group (n=8) (no intervention). Mixed methods were employed to investigate feasibility, acceptability, and preliminary outcomes. Recruitment and retention rates, missing data and adverse events were recorded to assess feasibility. A qualitative focus group was conducted to evaluate the acceptability of the intervention and outcome measures. Outcomes were measured at three time points: baseline, post-intervention and at six weeks follow-up. The primary outcome of interest was mental health (MHI-5). Other outcomes of interest included measures of courtesy stigma, self-stigma, self-esteem, positive meaning in caregiving, self-blame, self-compassion, social support, and social isolation. Results: Recruitment rates were lower than anticipated, yet the retention rates were excellent, with no dropouts and minimal missing data. Attendance rates were particularly high for this population, with 80% of parents attending more than 50% of the sessions. The findings of the qualitative evaluation showed that SOLACE was acceptable to parents and that the combination of online and face to face delivery worked well. Quantitative analysis revealed that mental health scores had significantly improved for those who took part in SOLACE compared to no significant changes for control group participants. In addition, changes in secondary outcome measures were in favour of SOLACE. Conclusions: A stigma protection intervention that improves the mental health of parents and carers of autistic children in an acceptable and feasible way has been produced and evidenced for the first time. A number of recommendations are made for future use in a larger, powered trial. The knowledge derived from this thesis may be used to help inform future service provision for parents and shape future autism policy so that the importance of stigma in relation to parent mental health and their caregiving role is emphasised.