Barriers to Ophthalmologic Care Reported by Family Caregivers of Users and Non-Users With Intellectual Disabilities

People with intellectual disabilities (IDs) are more likely to experience vision-related impairments, yet they face many barriers to accessing eye care. Although previous studies have described these barriers, few have compared barriers reported by families who have and have not accessed ophthalmologic care, which may provide insight into barriers interpreted as anticipated or experienced.

The study objectives are to compare barriers to ophthalmologic care reported by family caregivers of users and non-users and to interpret these differences as anticipated or experienced barriers.

A cross-sectional survey was conducted with 657 primary family caregivers in Taichung City and Hualien County, Taiwan, between August and October 2023. Caregivers selected from a list of 13 predefined barriers. Participants were classified as 'users' (n = 261) if they had taken their family member with IDs for an eye examination and 'non-users' (n = 396) otherwise. For interpretation, barriers reported significantly more often by non-users were labelled as 'anticipated', whereas those reported significantly more often by users were labelled as 'experienced'; these labels were based on service use status rather than direct temporal measurement. Logistic regression with marginal effects was used to identify predictors of the most common anticipated barrier.

A clinic environment perceived as unwelcoming or inaccessible was reported by 17.6% of non-users and 4.5% of users (p < 0.001). Users more frequently reported difficulty participating during appointments or examinations (9.95% vs. 4.25%, p = 0.004), equipment that could not be adapted (8.0% vs. 4.3%, p = 0.043), limited availability of accessible assessment tools (7.1% vs. 3.5%, p = 0.043) and limited provider experience in delivering accessible care for people with IDs (7.6% vs. 2.6%, p = 0.003). Higher caregiver strain and having ≥ 2 vision-related conditions were associated with reporting the environmental barrier.

Barriers reported by non-users suggest that perceptions of clinics as unwelcoming or inaccessible may discourage families from seeking a first eye examination for people with IDs. Improving accessibility and the care environment, alongside staff training and adaptable equipment and assessment tools, may reduce barriers reported by both non-users and users.