The Role of Specialised Medical ID Expertise in Care Consultations for People With Intellectual Disabilities: Experiences of Caregivers and Patients.

BACKGROUND

This study aims to explore patients' and their caregivers' experiences with and expectations of a medical consultation with a specialised ID physician at an outpatient ID practice.

METHODS

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 the ID physician and (3) coordination between the ID physician and other professionals.

RESULTS

Seven themes addressing the 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.

CONCLUSIONS

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.