QualitativeAutism : the international journal of research and practice2023

Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You've got to do everything on your own".

Amber M Angell, Olivia J Lindly, Daniella Floríndez and 5 others

PMID 37070240

WHAT IT FOUND

Parents of autistic children often find pediatricians helpful for physical health but absent from autism care.

Families felt left to navigate treatments alone. Shared decision-making occurred only when doctors listened to parents' expertise and values, rather than dismissing complementary approaches.

Key findings

01Pediatricians were often involved in early identification but remained uninvolved in the subsequent search for autism services and treatments, leading parents to feel unsupported.

02Families who used complementary health approaches reported high frustration with the lack of information from pediatricians, viewing the silence as a failure to provide support.

03Shared decision-making was facilitated when providers respected parents' values and expertise, engaging in ongoing discussions rather than dismissing concerns about treatments.

STILL TO COME

How it was doneWhat they found

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What it does not show

The study only observed one interaction between parents and a pediatrician, so findings rely heavily on caregiver perspectives rather than direct observation of clinical encounters. The sample was limited to bilingual, bicultural Latino families in an urban area, so results may not apply to other Latino subgroups, particularly those with limited English proficiency or in rural areas. The original study was designed to look at access to care, not specifically at shared decision-making, so the data may not fully capture the nuances of that process. The small sample size (12 families) limits the generalizability of the themes to the broader population.

Declared interests

The authors declare no conflicts of interest. The study was supported by NIH grants.

The easy way to misread this

Do not interpret these findings as evidence that pediatricians are intentionally negligent or that shared decision-making is impossible. The study highlights a gap in communication and knowledge, not a lack of care, and suggests that specific strategies like listening to parental expertise can bridge this divide.

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The study

Participants
12 families (13 children, 12 mothers, 8 fathers/stepfathers, 1 grandmother)
Certainty of evidence
Very low

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    Amber M Angell, Olivia J Lindly, Daniella Floríndez, et al. Pediatricians' role in healthcare for Latino autistic children: Shared decision-making versus "You've got to do everything on your own". Autism : the international journal of research and practice. 2023.

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