Experiences of patients with intellectual disabilities and carers in GP health information exchanges: a qualitative study

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Accurate health information exchange (HIE) is pivotal for good quality of care. However, patients with intellectual disabilities (ID) face challenges in processing and exchanging health information around GP consultations. Knowledge of HIE barriers and facilitators, including the roles of carers, may help to improve GP care for people with ID.


To gain more insight into HIE barriers and facilitators for ID patients in GP care.


A qualitative study exploring GP consultation experiences of people with ID (n = 35), professional carers (n = 20) and relatives (n = 15). Transcripts from interviews and focus groups were analyzed using a framework analysis approach.


Analyses resulted in four themes: (i) Recognizing patient health needs; (ii) Impaired doctor–patient communication; (iii) Carers’ mediating roles during consultations; and (iv) Patients’ autonomy and self-determination. Barriers related to communication skills, lack of time, continuity of carers and physicians, information alignment between relative or professional carer and the GP, and information transfer and recording within the patient network. Facilitating factors related mainly to carer interventions, personal connections with patients and GP communication with patients and carers outside the consultation.


There is considerable HIE potential in patients themselves, as well as in their network, although many barriers have to be overcome to profit from this. GP practices are recommended to adjust consultations and communication practices and to facilitate deployment of the patient’s network, while still considering patient autonomy.

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