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

Approximately 2.5 million people in the UK and 285 million worldwide experience sight loss. Many rely on informal caregivers (family/friends) for support. Previous research indicates that these caregivers may experience stress, anxiety, and depression related to their caregiving role. The level of distress can be linked to factors such as comorbidities in the PVI or their level of functional vision. While some studies have touched upon professional perspectives on caregiver support needs, none have specifically examined how HCCPs interact with and support caregivers of PVIs. This study aimed to address this gap by exploring what support HCCPs currently provide and what additional support they would recommend to enhance caregiver well-being. The study also acknowledges that a separate investigation would focus on the perspectives of the caregivers themselves.

Existing research highlights the substantial burden on informal caregivers of individuals with visual impairments. Studies in Canada and the USA show significantly higher use of informal home care among people with visual impairment compared to those without. The literature reveals that caregivers may experience various levels of stress, anxiety, and depression. A 2009 UK study, though focusing on dementia and visual impairment, indicated that professionals recognised the significant burden on caregivers and recommended additional respite resources. Another study explored Australian professionals' views on involving family members in group-based low vision rehabilitation programs. However, there was a lack of research specifically exploring the interaction and support HCCPs provide to caregivers of PVI in the UK. This study aimed to fill this gap in the literature.

A survey was developed by the authors, in consultation with an advisory group including individuals with VI and caregivers. The survey, which combined Likert-type scale questions and open-ended questions, was piloted with eye care professionals to ensure face validity and readability. The survey was then distributed online via Qualtrics from September to November 2019 to UK-based HCCPs through professional bodies and charity partners. Of 104 consenting individuals, 68 (65%) completed the survey. Quantitative data was analyzed using descriptive statistics, chi-square tests, and the Friedman test. Qualitative data from open-ended questions was analyzed using the Framework Method, involving familiarization, open coding, category development, and theme generation using NVivo software. The study received ethical approval from the City, University of London School of Health Sciences' Optometry Research Ethics Committee.

The survey revealed that the most common caregiver support activities undertaken by HCCPs were signposting to other resources (90%), providing information on low vision aids and adaptations (85%), and general information provision (82%). Activities focused on broader caregiver well-being, such as discussing emotional aspects or advising on caregiver self-care, were undertaken significantly less frequently. Qualitative analysis revealed several key themes. First, HCCPs noted the difficulty for caregivers in understanding the wide-ranging impacts of vision loss, its invisible nature, and the resulting impact on various daily tasks. Second, the emotional impact on both the PVI and caregiver was significant, often compounded by uncertainty about the future and potential relationship strain. Third, the study identified substantial gaps in support provision, including the need for enhanced emotional support, improved information and advice, respite care, financial support, and assistance with transport. Fourth, significant systemic issues were noted, such as difficulties navigating services and the pervasive under-resourcing of low vision services. Finally, recommendations for improvements included enhancing information accessibility (online and offline), providing up-to-date referral details, raising professional awareness through direct interaction with caregivers, offering emotional support training, increasing funding for low vision services, and creating more flexible support tailored to individual caregiver circumstances. The majority of participants reported confidence in providing advice, but the complexity of the system and disparate information resources remained a concern.

This study demonstrates that while HCCPs provide some support to caregivers of PVI, particularly practical and informational assistance, there are significant unmet needs, especially regarding emotional support and tangible resources. The disparity between the provision of informational versus emotional support is noteworthy and highlights a potential area requiring further focus in professional training. This aligns with findings from previous research indicating an unmet need for emotional support among people directly affected by VI. The study highlights the interconnection between the well-being of both the PVI and the caregiver, underlining the necessity of a holistic approach to support provision. Recommendations for respite care and financial support reflect the recognized value of these interventions in reducing caregiver distress and acknowledging the significant economic contribution of informal care. However, the study also emphasizes the critical role of system-wide improvements. The 'postcode lottery' effect in access to services highlights the need for policy changes and enhanced resourcing to address systemic inequalities. The COM-B model is relevant here, highlighting that while training can improve professional capability, opportunity (time constraints, funding) and motivation remain significant barriers. Future efforts should focus on addressing systemic challenges to ensure equitable and timely access to support for caregivers.

This study provides valuable insights into the support needs of caregivers of PVI in the UK. It reveals that HCCPs perceive substantial unmet needs and would welcome additional resources, training, and improved system coordination. Future research should focus on co-designing support services with both HCCPs and caregivers to develop more effective and accessible solutions. Further quantitative studies are needed to confirm the scale of unmet need and the effectiveness of the proposed interventions. Investigating the lived experiences of caregivers in more detail would complement the findings from this study.

This exploratory study has several limitations. Selection bias is likely, with participants potentially being those more interested in caregiver support. The survey dissemination methods led to variations in participation rates among different professional groups. Lack of demographic data on non-responders limits generalizability. The survey instrument was not formally validated, and the Likert scale may have oversimplified complex experiences. The relatively small sample size also limits the generalizability of the findings. The qualitative data enriched the quantitative findings, but did not mitigate the inherent limitations of the survey design itself.