Development of a Digital Platform Offering Social Support for Parents of Children with Autism

Background: More than half of parents with children with autism experience mental health or physical health problems. Protective factors for the health and well-being of these parents include social support, accessibility to care, and personal resources such as resilience (Ruiz-Robledillo N, et al. 2014). Currently, interventions are most often provided immediately after the announcement of the child’s diagnosis. Regardless of the level of support required, these interventions focus more on the child by providing assistance through parents. Fewer interventions target the health and well-being of parents in medium and long term.

Objectives: This study aimed to define the parameters of an online support intervention based on the needs of parents of young children with autism.

Methods: Qualitative research with focus groups was done. Eighteen parents were recruited for the focus groups. The interview guide was proposed based on a systematic review of the literature on the winning conditions of online interventions (Cherba M, et al. 2018) and two theoretical models: Parent Empowerment Program (Jensen PH, Hoagwood K2008, Rodriguez J, et al. 2011) and the Montreal Model of Parent Care Partners (Pomey P, et al. 2015). The Parent Empowerment Program proposes the development of personal effectiveness with information, social support, training, coaching, a directory of accessible services in the community and advocacy. The Montreal Model of Parent Care Partners proposes to understand in a complementary way the experiential knowledge of the person concerned and the scientific knowledge of health professionals.

Results: The need for social support has been strongly expressed. An online platform seemed very relevant for them to get support from other parents. The most important conditions were confidentiality, accessibility, complementarity with existing services, needs-based content and the relevance of a moderator, which one can be a peer worker.

Conclusions: This research raises the need to develop population interventions in a comprehensive approach including in the form of online social support. Such a platform could help parents develop a sense of social support and improve their coping skills and sense of self-efficacy. This innovative platform could help meet the informational and emotional support needs of parents based on peer support.