Children with intellectual disabilities (IDs) can have complex health conditions that require intense and ongoing care management by multiple healthcare professionals (HCPs). Families often experience frustrations and challenges sharing necessary information about their children’s unique emotional and communicative needs with HCPs. In turn, these needs are often poorly documented and shared with other HCPs. This contributes to compromised care and frustrations for families and HCPs. We conducted a qualitative study using focus groups to examine how 10 parents and 3 HCPs experienced provision of care for children with ID, as well as their suggestions for developing a one-page personal health profile (PHP) to improve communication. Parents suggested including behavioural descriptors rather than diagnoses. All participants believed a one-page PHP that was child and parent led would be very helpful and would improve communication between HCPs, parents and children leading to effective and supportive care.
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