Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study

Abstract

ObjectivesImplementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents’/caregivers’ experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting.DesignThis qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, ‘General Practice Surveillance for Autism’, a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically.ParticipantsTwelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed.SettingsAll interviews were completed over the phone.ResultsThere were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient–doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers.ConclusionThe findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting.Trial registration numberANZCTR (ACTRN12619001200178).

Family member and service provider experiences and perspectives of a digital surveillance and service navigation approach: A qualitative study with a culturally diverse community

“…In addition, participants highlighted how WMG-E has the potential and capacity to increase families' understanding about their child's development, consistent with research on other screening applications used in mental health (49). WMG-E might be especially important to increase knowledge of developmental milestones in CALD communities where barriers to education or information might exist (22,24). Future research is needed to ascertain the impact of WMG-E in increasing knowledge about child development in multicultural communities.…”

“…According to the participating service providers and navigators, the WMG-E was limited by the absence of immediate clinician input when families completed the weblink, re ecting previous research (21)(22)(23)(24).…”

“…Another study (20) highlighted the need for practice and policy changes including training of general practitioners in developmental surveillance, as well as allocation of time and nancial remuneration for developmental checks in primary care (1). Qualitative ndings from previous research have demonstrated enabling factors such as proximity, continuity of care, opportunistic contacts, integrated/connected engagement between services, as well as parental and service provider language and cultural concordance (22)(23)(24).…”

“…Increasingly, family member perspectives are being included during the evaluation of health initiatives (22,24,29). Qualitative research that focuses on in-depth description and personal experience stories and gathers the perspectives of family members and service providers on developmental surveillance and service access is important to provide insights around what works and how developmental surveillance monitoring can be improved.…”

“…Accessing services might be particularly di cult for CALD families due to their cultural beliefs, language barriers, poor health literacy and awareness of services, and the complex nature of child and family health services (13,22,24,25). The COVID-19 pandemic might have exacerbated di culties with service access for CALD families (26).…”