Primary care strategies for supporting parents of children with suspected autism spectrum disorder

Abstract

ASD is a complex neurobiological disorder requiring early childhood intervention to mitigate effects on overall quality of life. Without early intervention, individuals and families are impacted socially, emotionally and economically. In BC, wait lists for a formal assessment and diagnosis are longer than a year. Parents of children with suspected ASD are often left in an anticipatory waiting phase once ASD is suspected. They require guidance on learning what ASD is, developing knowledge about treatment approaches, and determining what resources and supportive measures are available to them. The mainstay approach to assessment is initially via a primary care provider. As such, the primary care provider (PCP) is the first source of guidance when concerns about a child are raised, and is responsible for referring the child for diagnosis, and providing parents direction on where to obtain interventional therapies. However, there is limited guidance on how to support parents during the anticipatory period of time between suspicion of symptoms and diagnosis. The aim of this project is to explore strategies that enable PCPs when caring for parents of children with suspected ASD. An integrative literature review was conducted, which included ten carefully selected articles. Two major themes were identified, which focused on concepts of knowledge and communication. Knowledge linked to the PCP included the need for up-to-date developmental, clinical, communication understanding and tacit knowledge. Communication is essential during waiting and early diagnosis, and in aspects of PCP availability, multidisciplinary collaboration and supportive decision-making. These key aspects help to prepare families to flourish in their recreation of family life. Attention to parent health and wellbeing is critical, as is the need to discuss difficult topics such as emotional stress and service limitations. Patient and family centred care (PFCC) is reported as a health care model that illuminates the importance of respect, rapport and trust, while affording accord, equity and collaboration. Using the PFCC model as a polestar, the PCP can navigate care focusing on cocreating longer term relationships between primary care, parents, interventions teams and early education partners.