Why Children With Disabilities Are Skipping Medical Visits

Medscape

15 hours ago

Children with disabilities who face disability-based discrimination at doctors' appointments are more than twice as likely to forego care later on, according to a new study published in Pediatrics.
'This is one of the first studies we've published that shows that discrimination is associated with worse health outcomes through decreased healthcare utilization. Foregone healthcare is something we want to prevent,' said Stefanie Ames, MD, lead author and board-certified pediatrician and associate professor of pediatrics at the University of Utah in Salt Lake City.
Disability-based discrimination is not always obvious to the doctors treating patients, and these experiences are much less studied in pediatrics than in adult care.
'Families can recognize it because they feel that mistrust, but it can be hard for providers to recognize,' Ames said.
Ames and her colleagues looked at data from the National Survey of Children's Health collected between 2021 and 2022 that included surveys from the parents of more than 24,000 children living with a disability. More than 63% of the kids had a disability that affected their daily life, and 11% of parents included in the survey said they had been treated or judged unfairly in healthcare system because of their child's health condition or disability.
This type of discrimination takes many forms, Ames said. The Civil Rights Division in the US Department of Justice provides guidance to health providers on providing accessible medical equipment in care settings, including wheelchair scales.
'If you don't have the equipment needed to care for children with a disability, they already don't receive the same care, especially because pediatric care is so weight-based,' she said.
Another common occurrence is a clinician only addressing the caregiver of a pediatric patient who has a disability, or making assumptions about that patient's quality of life.
Clinicians may also not provide preventive care services 'or not offer expected management because their life expectancy is shorter than other children,' Ames said.
Half of those who experienced discrimination were teenagers aged 13-17 years and 7% were children aged 5 years or younger. Meanwhile, children who were discriminated against were more likely to have been hospitalized in the past year (10.6% vs 6.3%) than those who had not.
More than twice as many families who experienced discrimination had decided to not seek out care in the past year compared with those who did not (aOR, 2.13). Those that said disabilities had affected their daily lives were three times as likely to have skipped appointments (aOR, 2.94).
Clinicians need to understand the barriers families may be facing on top of having a child with a disability, said Veronica Pollack, MSN, MSW, former clinical nurse specialist and former care coordinator at Lurie Children's Hospital in Chicago, who co-wrote a commentary about the research.
'One of the things I've seen happen is people getting kicked out of clinics or fired by providers because of no-shows,' Pollack said. Clinic staff 'might not understand why the no-shows are happening. There may be limitations on transportation, getting time off work, or getting childcare for other children and sometimes other family members.'
Clinicians and their staff should ask families about barriers that could prevent them from coming to appointments and try to address them. Not doing so 'could be seen as being done purposefully instead of just out of ignorance,' Pollack said.
Once children do come back for an appointment, clinicians need to treat families like new patients to rebuild trust.
'Once the trust is eroded, it's really hard to rebuild,' Ames said.
Pollack said clinicians should involve families and children in shared decision-making, asking what their biggest needs are, rather than making assumptions.
'Maybe the thing that is absolutely killing them is that they can't feed the kid,' because the child is having issues with swallowing, Pollack said. The clinician might teach a few exercises and make a referral to a speech language pathologist. 'That may relieve their anxiety and open up more space to seek other care.'