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P R I S M

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Recommendations for Practice for Pediatric Healthcare Professionals Working with Patients with Autism Spectrum Disorder

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PRISM

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Recommendations

For Pediatric Patients with Autism Spectrum Disorder

Shelley F. McDaniel MS Child Life Program Department of Human Development and Family Science University of Georgia 2018


P R I S M

PREPARE PROACTIVELY FOR THE HOSPITAL EXPERIENCE

RESTRUCTURE COMMUNICATION

INCLUDE PARENTS AND CAREGIVERS

SUPPLEMENT WITH TRAINING FOR STAFF

MODIFY THE ENVIRONMENT


Why PRISM

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Recommendations for Practice for Healthcare Professionals

While advances in healthcare have increased both access to and quality of healthcare experiences, individuals with Autism Spectrum Disorder (ASD) still experience many inequalities due to difficulties in communication and behavior that can lead to challenges diagnosing and treating health problems for individuals with ASD. Individuals with ASD are more likely to have complex medical needs compared to individuals without ASD and thus are more likely to have frequent interactions with the healthcare environment.  Children with ASD have more doctor visits, non-emergency care, hospital visits, and emergency room visits than children without ASD in the United States.  The increase in the number of hospitalizations of pediatric patients with ASD reflects the overall trend of increased prevalence of the disorder from 1 in 150 in 2000 to 1 in 68 in 2012. From 1999 to 2009, hospitalizations for children with ASD increased almost threefold, whereas hospitalizations for children with Down syndrome, cerebral palsy, and the general population showed no significant increase. While medical professionals strive to meet the needs of all patients, many report being underprepared to serve patients with ASD.  This finding aligns with other literature that suggests that medical professionals, in general, feel uncomfortable around patients with ASD which can negatively impact the quality of care provided.

On the other side of the interaction, families and patients with ASD express frustration with the difficulty finding and retaining a healthcare provider with adequate understanding of ASD and how to appropriately adapt care for these individuals and families. Many medical professionals call for more training on caring for patients with ASD and recognize the need for education about the diagnosis in general.

"The increase in the number of hospitalizations of pediatric patients with ASD reflects the overall trend of increased prevalence of the disorder from 1 in 150 in 2000 to 1 in 68 in 2012."

Due to the increase in prevalence of ASD and an increase in the number of hospitalizations of children with ASD, medical teams now recognize the need for ASD-specific plans or strategies to directly meet the needs of the patient and the family. An increased awareness and understanding of ASD is essential for providing quality familycentered healthcare.

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The PRISM   Recommendations seek to establish guidelines and evidence-based best practices for working with patients and families with ASD with the goal to improve the quality of care patients and families receive and the healthcare experiences patients and families have. For healthcare professionals, an ethical obligation exists to understand and serve all patients and families well, regardless of race, ethnicity, religion, gender, socioeconomic status, and disability.  With the understanding that patients and families with disabilities are among the most vulnerable populations served, ethically, healthcare professionals must seek to provide best practice when delivering care.


PRISM

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Recommendations

For Pediatric Patients with Autism Spectrum Disorder

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PREPARE PROACTIVELY FOR THE HOSPITAL EXPERIENCE Give families the option to complete a pre-hospitalization questionnaire Proactively screen for patients with Autism Spectrum Disorder Create an ASD-specific care plan for patients with Autism Spectrum Disorder Prepare patients and families with Autism Spectrum Disorder for the hospitalization experience and associated procedures Talk through sensory triggers and potential conflicts within the environment with patients and families with Autism Spectrum Disorder

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RESTRUCTURE COMMUNICATION Utilize an ASD-specific care plan to individualize communication Speak with a calm affect Ask closed-ended questions and make direct statements (e.g. ask specific "Yes" or "No" questions or state clearly "I need to...") Avoid the use of euphemisms, idioms, or other forms of mitigated speech Allow adequate response time Use visual communication when appropriate. Allow the use of Computer-Assisted Speech Technology when appropriate

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PRISM

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Recommendations

For Pediatric Patients with Autism Spectrum Disorder

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INCLUDE PARENTS AND CAREGIVERS Recognize parents and caregivers as experts on their child with Autism Spectrum Disorder Embrace parents and caregivers as partners in their child’s medical and psychosocial care Gather information from parents and caregivers about their child in order to address the unique needs of each patient with Autism Spectrum Disorder Invite parents and caregivers to be present for procedures and other experiences when appropriate

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SUPPLEMENT WITH TRAINING FOR STAFF Acknowledge that many medical professionals feel underprepared and uncomfortable providing care to patients and families with Autism Spectrum Disorder Respond to this need with additional training that includes diagnosisspecific information Involve outside experts on Autism Spectrum Disorder in the supplemental training such as local organization representatives and parents and caregivers of patients with Autism Spectrum Disorder

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PRISM

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Recommendations

For Pediatric Patients with Autism Spectrum Disorder

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MODIFY THE ENVIRONMENT Incorporate information gathered from pre-screening tools, hospital questionnaires, and parents and caregivers into patient care Create developmentally appropriate, low or high stimuli, Autismfriendly environments for patients and families Provide the option of a quiet waiting space with minimal sensory stimuli or a more sensory-stimulating waiting space with like toys with different textures or activity displays that have sounds and lights Transform patient rooms and unit treatment rooms to create Sensory Adapted Environments (SAEs) that include the option for dimmed lighting and lessened staff traffic Encourage the use of outside supports brought by the patient and family such as weighted blankets, wraps, headphones, and toys Maintain routines from home to normalize the hospital environment for patients

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Please send correspondence to: Shelley McDaniel shelley.mcd@icloud.com

Prism Recommendations Brief  
Prism Recommendations Brief  
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