Experiences with Family-Centered Care Among Parents with Concerns about Autism Spectrum Disorder or Developmental Delay in Their Toddlers

Background: Family-centered care (FCC) is an approach to healthcare that considers the needs and priorities of the whole family; as such, it has been associated with increased parent satisfaction, decreased parent stress, and improved child outcomes (Rosenbaum et al., 1998). Accessing FCC may be of particular importance for families of children with ASD, given the children’s complex healthcare needs and the parents’ high levels of stress (Hayes & Watson, 2013). This study compares experiences of FCC across two groups of parents: those with concerns about autism for their toddlers (ASD) and those concerned about other developmental issues (DEV). In addition, we compare experiences with FCC across two systems of care frequently accessed by both groups: primary care and early intervention.

Objectives: (1) To examine whether parents who are concerned about ASD for their toddlers differ in the components of FCC they experience compared with families who have DEV concerns; and (2) to examine whether parents’ experiences with FCC differ between their primary care providers (PCPs) and early intervention (EI) providers.

Methods: Participants were 59 families, 37 with ASD concerns (including 5 with an ASD diagnosis) and 22 with DEV concerns. Groups did not differ on any key child or parent demographic variables, including age of child in months (ASD: M=28.03, DEV: M=25.77). The Measure of Processes of Care (MPOC-20; King, King, & Rosenbaum, 2004) was completed by parents to assess five domains of FCC: Enabling and Partnership (EP), Providing General Information (PGI), Providing Specific Information (PSI), Coordinated and Comprehensive Care (CCC), and Respectful and Supportive Care (RSC). All families completed the MPOC-20 for both their PCP and EI provider. A 5(Subscale) x 2(Concerns group) x 2(Provider type) mixed design ANOVA was used and Bonferroni adjustments were applied to correct for pairwise comparisons.

Results: A significant interaction between MPOC-20 Subscale and Concerns group (F=3.744, p=.019) was followed by planned comparisons (Figures 1a and b). The ASD Concerns group reported: (1) significantly higher levels of RSC than EP, PGI, and PSI, but comparable CCC; (2) significantly lower levels of PGI relative to the other 4 scales; and (3) PGI levels that tended to be lower than those in the DEV group (p=.069). In contrast, comparable levels across the FCC subscales were found for the DEV group. Planned comparisons between Concerns group and Provider type revealed significantly higher ratings for EI providers than PCPs for the ASD concerns group only (EI: M=5.309, PCP: M=5.865, p=.005).

Conclusions: While both groups of parents reported high levels of comprehensive and respectful care, the ASD Concerns group experienced more inconsistency in FCC across domains. Parents with ASD concerns assigned lower ratings of general information provision relative to other FCC domains, and higher ratings of respectful and supportive care relative to information provision and enabling/partnership. In addition, the ASD concerns group, but not the DEV concerns group, provided higher ratings of FCC for EI providers than for PCPs. These results have potential implications for improving the experience of parents of children with ASD concerns within the healthcare system.