Caregivers of people with learning disabilities and their experiences of communicating with healthcare professionals

Background Communication challenges are a recognised factor in the inequalities that people with learning disabilities experience in their access to, and use of, healthcare services. People with learning disabilities are often assisted in their interactions with healthcare professionals by a caregiver, whether paid or unpaid.
Aim To understand the experiences of caregivers who support people with learning disabilities in their encounters with healthcare professionals in settings such as general practice surgeries, emergency departments, hospital outpatient departments and hospital wards.
Method Paid and unpaid caregivers from different care environments were recruited using convenience and purposive sampling. Semi-structured interviews with 33 caregivers were conducted remotely, transcribed and thematically analysed.
Findings Six themes emerged from the data and this article focuses on one of them: caregivers’ status, skills and knowledge. Participants explained that healthcare professionals often did not listen to them, did not recognise their skills and discounted their insights. Participants also felt that their caregiver role was misunderstood and that they were often labelled as ‘anxious’ or ‘pushy’.
Conclusion Many people with learning disabilities need their caregiver to participate in clinical consultations, but healthcare professionals do not engage with caregivers in a way that enables
them to contribute fully.