Satisfaction with Care Coordination Program for Families of Children with Autism Spectrum Disorders
Care Coordination (CC) services provided in the context of a medical home, emphasize an “accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally effective” (American Academy of Pediatrics, 2002) approach to care. CC services can be important for families of children with autism spectrum disorder (ASD) (Carbone, Behl, Azor, & Murphy, 2010), especially in the presence of additional co-occurring medical or mental health conditions (Carbone, Behl, Azor & Murphy, 2010). This highlights the need for specialty clinics to provide these services to families.
To evaluate the benefit of implementing CC services in a clinical setting, its utility for helping families understand the child’s diagnosis, connect to community resources, and benefit from coordination of care must be examined.
Assess participants’ preliminary feedback about the CC program and define aspects of the program that they found most helpful.
The sample for this analysis is part of an ongoing study that is currently enrolling families of children with ASD at Kennedy Krieger Institute’s Center for Autism and Related Disorders (CARD). 92 of the 225 enrolled families have completed the study and, thus, have completed the post measures between September 2014 and September 2015. Assessment of the demographic profiles found the sample to be fairly representative of CARD’s clinical population with respect to age, parent education, race and socioeconomic status.
Parents were given an opportunity to provide qualitative feedback via online survey on the aspects of the program that they found most helpful. These responses were coded by two independent coders and differences were resolved by discussion.
Approximately 99% of participants identified the CC program to as helpful. Based on their comments, seven independent themes (care coordination, overall and community resources, psycho-education, general support, availability and other) emerged.
There were differences in parent reporting of themes based on the whether the child had a previous ASD diagnosis. Parents in this group found psycho-education (chi square=5.25 p=0.02) and the general support (chi square=5.59 p=0.02) from the program most helpful. Also parents with less than Bachelor’s level education found community resources (chi square=6.63 p=0.04) to be more helpful than those with bachelor’s level education or higher. There were no differences in reporting based on age, race and SES.
The analysis suggests that most families found the program to be helpful and would continue to benefit from these services throughout the child’s lifetime. The themes that emerged in our analysis were expected given the primary targets of our program. However, an unexpected finding was that the general supportive nature of the care coordination alone was helpful for a large proportion of the families. These comments speak to the very basic need for families of children with ASD to feel connected to a network of support that can assist them in meeting their child’s needs.
We recognize the inherent need to differentiate services based on individual families’ needs. Further analysis of participant feedback and program utilization will assist us in determining how to best customize CC services in the future.