A mixed-methods approach to mapping caregiver-reported paths of service delivery following early ASD concerns

Abstract

Families with early concerns about autism spectrum disorder (ASD) for their children often experience a delay between first concerns and diagnosis (2 years on average; Sansosti et al., 2012), and many caregivers describe frustration with the system navigation involved in the process of accessing an ASD diagnostic evaluation and services. There are well-documented barriers to care that can arise at many different points along this service delivery pathway (e.g., low adherence to ASD screening guidelines in primary care; low rates of evaluation referrals; insufficient capacity for diagnostic evaluations which often results in long wait times). Despite the proliferation of research aimed at improving service delivery for early ASD identification, a number of challenges remain; in particular, the difficulty of assessing and intervening on a complex, cross-system service delivery pathway, and difficulties with family engagement and satisfaction with the ASD diagnostic process. With the aforementioned challenges in mind, the current study employed a mixed-method approach to examine the utility of two innovative strategies for characterizing families’ paths through service delivery following initial ASD concerns. Data were collected through semi-structured phone interviews with caregivers who reported early ASD concerns for their children to assess the timing and nature of initial ASD concerns, and if applicable, what their process was like to pursue an ASD diagnostic evaluation and services for their child. A quantitative approach (cascade analysis) was selected to characterize families’ paths through service delivery at a group level across the diagnostic pathway, prioritizing breadth of understanding, while a qualitative approach (patient journey mapping) was selected to capture the potential complexity of a subset of families’ experiences (prioritizing depth of understanding and family perspective). Results revealed a number of considerations for potential future use of these methods, while highlighting an innovative and integrative approach to mapping paths of service delivery following early ASD concerns.