Priority 4 from the Paediatric Hospital Care PSP

UNCERTAINTY: How can we ensure that healthcare delivery in hospital meets the needs of children and youth with developmental disabilities on the general paediatric inpatient unit? (JLA PSP Priority 4)
Overall ranking 4
JLA question ID 0114/04
Explanatory note Children with developmental disabilities have unique needs, as such it is important how best to address their needs on the general paediatric inpatient unit 

Belanger, R., Leroux, D., & Lefebvre, P. (2021). Supporting caregivers of children born prematurely in the development of language: A scoping review. Paediatrics & Child Health, 26(1), e17-e24.
Fang, Z., Barlow, J., & Zhang, C. (2020). Parenting programs that address physical abuse in childhood for families of children with developmental disabilities in mainland China: systematic review and meta-regression. Trauma, Violence, & Abuse, 1524838020915599.

Health Research Classification System category  Generic health relevance
Extra information provided by this PSP
Original uncertainty examples My daughter had a rare genetic condition at birth. During her 57-day stay at the paediatric hospital, she was seen by many doctors and received many types of tests, the medical team was not able to give a precise medical diagnosis, let alone an effective treatment plan. For us (parents), everyday our question was - what would be the effective treatment plan for our daughter? ~ My largest concern is around the assumptions that healthcare workers make with non-neurotypical children. I feel that these incorrect assumptions have impacted the quality of my child's care. ~ Our other concern is our child is diagnosed with ASD. When he was younger getting him to take the inhalers while it was still manageable a challenge and I found not everyone was equipped with the knowledge to help with those challenges.  
Submitted by  3 x friend/family member
PSP information
PSP unique ID 0114
PSP name Paediatric Hospital Care (Canada)
Total number of uncertainties identified by this PSP. 75  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 18th and 19th August 2021