The role of specialized medical ID expertise in care consultations for people with intellectual disabilities: experiences of caregivers and patients

This study aimed to explore patients’ and their caregivers’ experiences with, and expectations of, a medical consultation with a specialized ID physician at an outpatient ID practice. Fifteen semi-structured interviews were conducted with patients and their caregivers. Interview topics concerned 1) ID physician’s knowledge and skills, 2) communication between participants and ID physician, and 3) coordination between ID physician and other professionals. Seven themes addressing roles of the ID physician were identified. Five roles relate to actions and attributes during medical consultations: clinician, patient-centred doctor, holistic physician, human, and sparring partner for the patient’s network. Two roles relate to actions and attributes around medical consultations: coordinator and advocate.
Patients with intellectual disabilities and their caregivers value ID physicians’ roles beyond clinical skills during consultations, including roles related to care coordination, having a professional network, and advocating in a broader context around medical consultations.