What support do caregivers of people with visual impairment receive and require? An exploratory study of UK healthcare and charity professionals’ perspectives

Background: Some informal caregivers of people with visual impairment (PVI) require support themselves, but how UK healthcare services and sight charities currently support caregivers is not well understood. This study explored what support, information, and advice healthcare and charity professionals (HCCPs) provide to caregivers of PVI, and what additional support they recommend. Methods: An online survey was completed by 68/104 (65%) UK HCCPs (September–November 2019). Participants answered Likert-type questions on interactions with and support for caregivers; 38 (56%) provided open-ended responses, analysed using the Framework Method. Results: Caregiver support most commonly involved onward signposting (90%; 95% CI: 82–97%) and providing information about low vision aids/adaptations (85%; 95% CI: 77–94%), with activities addressing broader caregiver wellbeing occurring less frequently (Friedman’s χ²(8)=186.87, P<0.001). Qualitative themes highlighted caregivers’ difficulties navigating an under-resourced, complex system; recommended improvements included better coordination and accessible information, emotional support, respite care, and financial assistance. Conclusions: HCCPs perceive substantial unmet needs among caregivers of PVI and would welcome more resources, information, and training to support them.

Jamie Enoch, Christine Dickinson, Ahalya Subramanian