The nation’s pediatricians are for the first time receiving guidance on how best to care for young people with developmental disabilities when they are hospitalized.

The guidelines are part of a policy statement and clinical report issued this month by the American Academy of Pediatricians on meeting the needs of all those ages 13 to 18 when they are hospitalized.

In particular, the guidance notes that hospitalized patients with developmental disabilities should be given the opportunity to participate in their care.

“It is important to involve individuals with disabilities in their own care to the best extent possible to ensure that providers do not minimize patients’ autonomy because of the presence of a disability and tailor participation to their ability,” reads the clinical report published online in the journal Pediatrics.

The pediatrics group cites evidence from studies on adults suggesting that people with intellectual disabilities are more likely than others hospitalized for the same diagnoses to have longer stays, spend more time in the intensive care unit and have higher rates of surgical complications.

Pediatricians are advised to be mindful that changes in environment can be “very stressful” for people with developmental disabilities. Adolescents in this population may associate hospitals with illness and pain and they may struggle with the noises, influx of people and change in routine that occurs when they are admitted.

Parents and families are “encouraged to be ‘experts on their child,'” according to the guidelines.

“Caregivers can provide insight into the adolescent’s developmental stage and familiarize hospital personnel with the individual’s preferences and routines,” the report states. “It is important for the hospital team to establish a rapport, assess the developmental stage, and explain all aspects of the hospitalization, including treatments and procedures, in a developmentally appropriate way, when possible.”

The guidance also includes information on circumstances where patients with developmental disabilities require sedation and about ways to assess pain in those with communication difficulties.

Discharge planning should “include careful coordination of new supplies/equipment and home health services and/or reinstating outpatient services to ensure a safe discharge and continuation of care,” the pediatrics group notes.

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