Shared Decision Making in Health Care for Children

with Autism Spectrum Disorder: Barriers and Facilitators

YuYu C. Du, MSN, RN, CPNP

Question Results Conclusions

What are the barriers and facilitators that influence engagement Hubner et al. (2016) used the NS-CSHCN to define SDM as a composite categorical variable and a composite Parents of children with ASD engage less in the SDM process than parents of children
in the shared decision making (SDM) process among parents of continuous variable. The findings of this secondary analysis indicated parental participation in SDM was lower with other developmental disabilities.
children with autism spectrum disorder? among parents of children with ASD than among those of children with cerebral palsy (CP) and children with Access to a medical home and open communication with the pediatricians about
Down syndrome (DS). This study also showed that having a medical home was independently associated with treatment options like complementary and alternative medicine facilitate increased
Background increased SDM participation.3 parental engagement in SDM.
In the 2009-2010 National Survey of Children with Special Health Parent-Reported Participation in SDM Comorbidities of other behavioral conditions like ADHD may be a barrier to the SDM
Care Needs (NS-CSHCN), caregivers (later all termed as process.
(Adapted from Hubner et al., 2016)
parents) of children with autism spectrum disorder (ASD) Pediatricians limited knowledge about ASD treatment and available resources are
Diagnostic Group Categorical SDM Outcome Continuous SDM Outcome
reported a greater lack of involvement in SDM for their childrens another barrier to the SDM process.
Ages 3-17 (Proportion of Parents) (Degree of Participation 0-12)
health care than parents of children with other developmental
% Mean
disabilities and/or mental health conditions.1
ASD 56.7 8.7 Implications
The subcomponents of SDM in the NS-CSHCN include whether CP 70.5 9.7 More research is needed to understand factors that influence parents participation in
health care providers (HCPs): Down syndrome 70.8 10.0 SDM. These factors may be different in parents of children in different age groups due
discuss options for health care treatments, to different developmental expectations, and the functional levels of the children with
encourage caregivers to raise concerns/questions, Another study, based on the same NS-CSHCN, investigated differences among health conditions in the level of autism.
make it easy to raise concerns/questions, and SDM (Lipstein et al., 2015). While both ADHD (attention-deficit/hyperactivity disorder) and ASD involve Current studies have not explored how effective SDM is when adopted by different
consider/respect caregiver treatment choices.1 behavioral conditions, the challenges to implementing SDM were different. Among the three study groups team models (inter- vs. multi- vs. trans- disciplinary team approach). Further research
(ADHD only, ASD only, ASD+ADHD), parents in the ASD+ADHD group reported the least experience of SDM can help make SDM more functional within a medical home.
Rationale although there were no significant differences between these two ASD groups. The authors suggested that Although most parents want to be a part of their childs care, how they perceive their
multiple professionals involvement in the care of ASD, when it was not well coordinated, may reduce the effect role in working with the HCPs may be different. Some parents may be more
SDM differs from paternalistic or informed decision-making of SDM.4
models in which (a) physicians hand down the treatment plan and comfortable with the traditional paternalistic decision model, yet some may want to
patients (parents in the pediatric population) give consent, or (b) Frequency of SDM Subcomponents by Behavioral and Developmental Conditions (%) lead the decision making. How this parent perception influences the SDM process is
parents make decisions based on all technical information received. (Adapted from Lipstein et al., 2015) worthy of further investigation.
Conditions Consistent HCPs HCPs HCPs HCPs SDM has shown positive results in a few studies of treatment outcomes and parent
SDM is an expansion of the well promoted family-centered care SDM discussed encouraged made it easy respected satisfaction. More studies in this area can further validate the model.
model in which children and their families are the focus of composite health care parents to for parents parents Academic and clinical preparation about ASD is important for HCPs. Understanding
services, and its aim is to empower them in the care and decision measure treatment raise concerns to ask treatment and being able to use the SDM model will be a key of curriculum component.
making process. options questions choices Further research on how each of the four subcomponents affects the process will
provide more information about how to enhance interactions between HCPs and
SDM allows parents to be in an active role and brings HCPs and parents.
ADHD only 69.6 81.7 80.9 85.8 84.4
parents into a partnership. SDM employs a two-way dialogue
process of exchanging knowledge and information, considering ASD only 57.4 68.0 73.0 78.4 78.4
clinical options, evidences, and outcomes, and aligning the plans ASD+ADHD 56.6 69.4 70.2 74.9 75.3
with the family values, circumstances, preferences, and goals. A
decision about the treatment is made when there is mutual Levy and colleagues (2016) conducted a qualitative study to identify gaps in the process of SDM between
agreement between parents and HCPs.2 primary care pediatricians and parents of children with ASD. This study also investigated the knowledge gap
between these two groups. Factors that affected the SDM process between the pediatricians and the parents
The SDM model has been used effectively in other pediatric included: 1) lack of communication between the pediatricians and parents, 2) the pediatricians lack of
populations, but little literature about SDM in pediatric ASD knowledge of available resources, ASD treatment options, and their professional roles in the ASD treatment, and
population is available. There is a need to better understand how 3) the conflicted perceptions about the use of complementary and alternative medicine.2
this model can benefit the treatment planning process for a wide
range of children and families due to the complexity of ASD
condition.
References
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making and treatment decisions for young children with autism spectrum disorder. Academic Pediatrics, 16 (6), 571-578.
3. Hubner, L. M., Feldman, H. M. & Huffman, L.C. (2016). Parent-reported shared decision making: Autism spectrum disorder
and other neurodevelopmental disorders. Journal of Developmental and Behavioral Pediatrics, 37 (1), 20-32.
4. Lipstein, E. A., Lindly, O. J., Anixt J. S., Britto, M. T. & Zuckerman, K. E. (2015). Shared decision making in the care of
children with developmental and behavioral disorders. Maternal and Child Health Journal, 20 (3), 665-673.