Parent Perceptions AboutCommunicating With Providers Regarding Early Autism Concerns
abstract
BACKGROUND: Long delays between parents’ initial concerns about their children’s development
and a subsequent autism spectrum disorder (ASD) diagnosis are common. Although
discussions between parents and providers about early ASD concerns can be difficult, they are
critical for initiating early, specialized services. The principles of shared decision-making can
facilitate these discussions. This qualitative study was designed to gain insights from parents
of young children with ASD about their experiences communicating with primary care
providers with the goal of identifying strategies for improving conversations and decisionmaking regarding the early detection of ASD.
METHODS: Three 2-hour focus groups were conducted with 23 parents of children with ASD
,8 years old. Qualitative analysis employed an iterative and systematic approach to identify
key themes related to parents’ experiences.
RESULTS: Eight themes related to communication about early ASD concerns emerged:
characteristics of the child that caused parental concerns, the response of others when the
parent brought up concerns, how concerns were brought up to the parent by others, parental
responses when others mentioned concerns, information seeking, barriers to and facilitators
of acting on concerns, and recommendations to providers. Parent responses suggest the need
for increased use of shared decision-making strategies and areas for process improvements.
CONCLUSIONS: Primary care providers can play a key role in helping parents with ASD concerns
make decisions about how to move forward and pursue appropriate referrals. Strategies
include responding promptly to parental concerns, helping them weigh options, and
monitoring the family’s progress as they navigate the service delivery system