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

The study addresses how UK healthcare and charity professionals interact with and support informal caregivers (family and friends) of people with visual impairment, and what additional strategies could enhance such support. With approximately 2.5 million people in the UK living with sight loss and evidence that PVI use more informal home care, caregivers may experience stress, anxiety, and depression related to caregiving. Prior work suggests caregiver distress may relate to factors such as the PVI’s comorbidities and functional vision. While some studies have included professional perspectives on caregiver issues in contexts such as dementia with VI or group-based rehabilitation, none had specifically examined how professionals support informal caregivers of PVI. This exploratory survey therefore aimed to characterize current support, information, and advice provided to caregivers by HCCPs and to identify recommended improvements.

Existing literature indicates that caregivers of adults and children with VI may experience psychological strain, including stress, anxiety, and depression, influenced by factors like comorbidities and the PVI’s functional vision. Professionals have previously noted the magnitude of caregiving in dual diagnoses (e.g., dementia with VI) and advocated respite resources. Group-based low vision rehabilitation has considered the involvement of family and friends, noting both benefits and drawbacks. People affected by VI frequently report unmet emotional support needs and perceived lack of empathy from health professionals, with dyadic spillover of distress documented in spouses of PVI. Caregiver burden has been observed even when patients maintain relatively good acuity (e.g., in neovascular AMD). However, no UK-based studies had directly assessed psychological distress among caregivers of PVI, and none had focused on how HCCPs specifically support these caregivers, highlighting a gap this study addresses.

Design: Cross-sectional online survey combining Likert-type items and four open-ended questions. Instrument development: Literature search found no validated questionnaires directly relevant; authors developed a new survey with input from an advisory group of individuals with VI and caregivers. The survey was piloted with three experienced eye care professionals for face validity and readability; revised accordingly. Ethics: Approved by City, University of London School of Health Sciences’ Optometry Research Ethics Committee (ETH1819-1338). Participants and recruitment: UK-based HCCPs aged ≥18 who reported regular professional contact with visually impaired clients/patients/service users were eligible. The survey (Qualtrics) ran September–November 2019 and was disseminated via UK professional bodies and charity partners. Consent was obtained online. Measures: Items covered demographics; service user characteristics; frequency and nature of interactions with caregivers; types of support provided; perceptions of caregivers’ needs; clarity of referral pathways; perceived quality of the support system; interest in further training. Open-ended items elicited views on differences in caring for PVI, gaps in support, and suggestions for improvements and training/resources. Quantitative analysis: Descriptive statistics; chi-square goodness-of-fit tests where appropriate. For caregiver support activities, Friedman test (two-sided) with Bonferroni-adjusted Wilcoxon signed-rank post-hoc comparisons. Conducted in SPSS v25. Qualitative analysis: Framework Method. Steps included familiarization, open coding, grouping codes into higher-order categories, and developing an analytical framework. Coding by first author; categories and codes discussed with senior researchers; data organized in NVivo 12 Pro into a framework matrix to derive themes.

Sample: 68/104 consenting HCCPs completed the survey (65% completion). Professions included optometrists (29%), ECLOs/sight loss advisers, dispensing opticians, rehabilitation staff, orthoptists, and others; most worked primarily with older adults (≥65 years). Service users commonly had AMD (93%). Quantitative results: - Significant differences in frequency of support activities (Friedman’s χ²(8)=186.87, P<0.001). Most common: signposting to other help (61/68; 90%; 95% CI: 82–97%); discussing low vision aids/adaptations (58/68; 85%; 95% CI: 77–94%); providing information about vision loss/prognosis (56/68; 82%; 95% CI: 73–92%). Less common: discussing emotional aspects of caregiving (30/68; 44%); advising caregivers on their own health (23/68; 34%); providing counselling/therapy (6/68; 9%). Post-hoc comparisons showed practical activities performed significantly more often than wellbeing-focused activities (all P<0.001). - Interaction and identification: 70% interacted with caregivers always/frequently; 76% always/frequently checked whether an accompanying person was a caregiver. - Perceived caregiver need: 77% thought caregivers would benefit from additional practical/emotional support (always/frequently); 56% said caregivers would benefit from more generic carer services (counselling, respite, financial/legal advice). - Confidence and pathways: 67% were confident always/frequently in providing advice/support/information; 60% were clear always/frequently about where to refer caregivers; only 28% were confident that caregivers had timely access to recommended support (always/frequently). - Safeguarding: 6% had raised a safeguarding alert for a caregiver. Qualitative themes: - Hidden nature and broad impact of VI complicate caregiver understanding and planning; caregiving often involves numerous small, unplanned tasks across daily life. - Emotional impacts on both caregiver and PVI, prognostic uncertainty, and relationship strains as caregivers balance support with PVI independence and privacy. - Key gaps: emotional support for caregivers; practical/tangible support (respite, transport); financial/benefits advice; clearer, accessible, up-to-date information and signposting; navigation of complex, under-resourced systems; recognition of caregivers as stakeholders. - Recommendations: consolidate information (one-stop, offline/online, local and national contacts); clarify referral pathways; emotional support training for HCCPs; learn directly from caregivers; increase and equalize funding for low vision and rehabilitation services; adapt support to caregivers’ constrained schedules (e.g., remote options).

HCCPs reported predominantly providing informational and practical support (signposting, low vision aids, condition information) rather than emotional support, reflecting role boundaries, time pressures, and the specialized nature of psychological care. This aligns with broader evidence that PVI often experience unmet emotional support needs, with distress potentially affecting both members of the caregiver–PVI dyad. Participants perceived substantial unmet needs among caregivers, notably for emotional support, respite options, and financial assistance, consistent with broader caregiving literature showing respite can reduce distress and caregivers' contributions are economically significant. Systemic constraints—underfunded and overstretched low vision and rehabilitation services, complex and variable local provision (“postcode lottery”), and increased demand (including COVID-19 effects)—limit caregivers’ timely access to support, even when signposting occurs. Within the COM-B framework, training may enhance HCCP capability to engage caregivers but does not solve opportunity barriers such as limited time and resource scarcity. Consolidated, up-to-date information resources and clearer referral pathways may improve navigation and access but cannot fully compensate for insufficient downstream service capacity. Overall, findings underscore that enhancing caregiver support requires both professional upskilling and structural investment in services that benefit PVI and caregivers alike.

HCCPs commonly support caregivers through signposting and practical low vision-related advice but perceive marked gaps in emotional support and tangible resources such as respite and financial assistance. Participants highlighted fragmented information and referral pathways, inequitable access, and systemic under-resourcing that constrain effective support for caregivers. They expressed strong interest in additional training and resources, particularly around emotional support and up-to-date signposting information. Future work should co-design caregiver support pathways and resources with caregivers and HCCPs, evaluate one-stop information models, and address structural capacity and funding to ensure timely, equitable access to services.

- Selection and response bias: likely over-representation of HCCPs interested in caregiver support; uneven reach across professional groups (e.g., only one ophthalmologist). - New, non-validated survey instrument without reliability testing (e.g., test-retest). - Limited generalizability due to small, self-selected sample and lack of data on non-responders. - Likert-type items required participants to summarize varied experiences, reducing granularity; context-specific nuances may be lost. - Cross-sectional design; UK context during a period of service strain may limit applicability elsewhere or over time.