Introduction

Around 2.5 million people in the UK [1], and an estimated 285 million people worldwide [2], are living with sight loss. Many individuals living with visual impairment (VI) will receive regular support from family members or friends, sometimes referred to as ‘informal caregivers’ [3]. Large cross-sectional studies in Canada [4] and the USA [5] show that people with visual impairment (PVI) use significantly more informal home care than those without VI.

Previous research has established that caregivers of adults and children with VI may experience stress, anxiety, and/or depression linked to their caregiving role [6,7,8], and therefore may be in need of support. Research suggests that the level of caregiver distress may be linked to factors such as comorbidities experienced by the person with VI [9], or their level of functional vision [10, 11].

Some of the relatively sparse literature involving caregivers of PVI has elicited the perspectives of health and care professionals about caregiver support needs and services. For example, a 2009 UK-based qualitative study involved in-depth interviews with several participant groups about dementia and visual impairment, including low vision professionals [12]. That study [12] found that low vision professionals were aware of the magnitude of the caregiving task faced by informal caregivers of people living with both dementia and VI, and recommended additional respite resources in order to reduce caregiver distress. Additionally, a qualitative study explored Australian vision rehabilitation professionals’ views on the benefits and drawbacks of involving family members and friends of PVI in group-based low vision rehabilitation programs [13].

These aforementioned studies have incorporated professionals’ perspectives on issues relevant to caregivers and PVI together. However, to the best of our knowledge, no study has specifically explored how professionals involved in the support of PVI interact with and support the informal caregivers of their patients, clients, or service users with VI. A study was therefore conducted in order to explore two interlinked research questions: firstly, what support, information, and advice healthcare and charity professionals (HCCPs) in the UK currently provide for caregivers of PVI; and secondly, which additional strategies HCCPs would recommend in order to enhance support for caregivers of PVI. (A separate study will consider the views of caregivers themselves, regarding how they could be better supported.)

Methods

Development of the survey

A literature search was initially conducted for studies exploring the experiences of health professionals (within and outside ophthalmology) working with informal caregivers. No studies were identified using validated questionnaires that were relevant to the present study’s research questions. Therefore, a survey was developed by the study authors, in consultation with an advisory group consisting of individuals with VI and caregivers.

The survey was designed in order to understand the views of HCCPs, regarding the type of support, referrals and advice they currently provide to caregivers of PVI; their thoughts on the quality of the support available for caregivers; and suggestions for improving support. The survey combined Likert-type scale questions and four open-ended questions. Information was also collected on participant demographics and characteristics of the participant’s service user base (e.g., age of most clients/patients). The full survey questions are shown in Appendix 1.

Next, the survey was piloted with three experienced eye care professionals, to check for face validity and readability of the instrument. Following their comments, a second iteration of the survey was developed. The survey received final approval from the City, University of London School of Health Sciences’ Optometry Research Ethics Committee (reference ETH1819-1338).

The final version of the questionnaire was then distributed online via Qualtrics in September–November 2019 and publicised by relevant UK-based professional bodies and charity partners (please see Acknowledgements). The survey was open to UK-based participants aged 18 or over who considered themselves to be in regular professional contact with visually impaired clients, service users, or patients. Written informed consent was obtained from all participants.

Data analysis

Quantitative responses

Descriptive analysis of demographic information and responses to the Likert-type scale questions was undertaken. Where appropriate, chi-square tests of goodness-of-fit were used to explore whether one question response was chosen significantly more often than other responses. For the question asking participants to select activities conducted with caregivers, the Friedman test (two-sided) and post-hoc pairwise comparisons with Bonferroni’s correction were undertaken to establish if there were significant differences between the frequencies of the different activities. Statistical tests were conducted using SPSS, version 25.0 (SPSS Inc., Chicago, IL, USA).

Qualitative responses

To analyse the qualitative data afforded by the open-ended survey questions, we used the Framework Method [14], a systematic approach to qualitative data analysis. The matrix output generated through the Framework Method allows not only for the identification of broad patterns across the dataset but also close attention to individual cases. This comprehensiveness was considered valuable for our exploratory applied study, to ensure that potentially useful, innovative ideas and insights were included and retained, even where these did not fit neatly into the overarching categories.

Responses to each of the four open-ended questions were analysed in turn by the first author (JE). The first step was familiarisation with the dataset through several readings and making some initial analytical notes. Formal open coding was then used to classify relevant, meaningful elements of the dataset. Once codes were developed and refined, these were grouped into higher-order categories. The categories and constituent codes were then discussed and confirmed with the senior researchers on the study (AS and CD), to finalise an analytical framework. The software NVivo 12 Pro (QSR International, Melbourne, Australia) was used to sort the qualitative data into a framework matrix, with a column per code and a row per participant. Reviewing the framework matrix as a whole allowed for the development of themes, to encapsulate meaningful patterns in the responses.

Results

Out of 104 individuals who read the participant information online and consented to participate, 68 (65%) completed the survey.

Characteristics and professional profile of participants

Table 1 displays characteristics of the 68 HCCPs who participated in the study, as well as attributes of the main service user groups with whom the HCCPs reported working. As shown in Table 1, optometrists were the most represented profession among participants, accounting for 29% (N = 20) of responses. Participants had varying levels of experience; 37% of participants had worked for 1–5 years with PVI, while 28% had worked with PVI for over 20 years. Generally, participants were focused on working with older adults, with 84% of participants working with service users over 85 while only 28% were working with service users under 19. Participants were significantly more likely to say that most or all of their service users were older adults over 65 than not (χ2 (1) = 15.06, P = < 0.001). Age-related macular degeneration (AMD) was the most frequently selected cause of visual impairment among service users, selected by 93% of participants. In contrast, 37% of participants reported eye conditions commonly causing visual impairment in children, such as cerebral visual impairment and childhood ocular blindness, as common causes of VI among their service users.

Table 1 Characteristics of participants (N = 68) and their service users.
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Quantitative survey responses

Data from the Likert-type scale questions about HCCPs’ perceptions and practices are shown in Table 2a, b.

Table 2 (a, b) Results from Likert-type scale questions on the survey regarding views on caregiver support.
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There were significant differences in the kind of support activities HCCPs reported undertaking with caregivers (Friedman’s χ2 (8) = 186.87, P < 0.001). The support activities undertaken by participating HCCPs were most commonly practical and/or related to vision; these included signposting of caregivers to other sources of help such as sight loss or caregiver support charities (undertaken by 90% (95% CI: 82–97%) of participants), as well as discussion of low vision aids and adaptations (85% (95% CI: 77–94%)) and information provision (82% (95% CI: 73–92%)). In comparison, activities focused on broader caregiver wellbeing (such as discussing the emotional aspects of caregiving, or advice to caregivers about looking after their own health) were undertaken significantly less commonly (Bonferroni-adjusted pairwise comparisons using Wilcoxon signed-rank tests, between each of the three practical activities and the two wellbeing activities: all P < 0.001).

Qualitative findings

In addition to the quantitative data presented above, 38 participants (56%) responded to some or all of the four open-ended questions. Responses to each of the four questions were analysed in turn using the Framework Method [14]. The four questions generated responses that overlapped in parts, while also raising distinct concerns and suggestions for improving services for caregivers of PVI.

Firstly, HCCPs discerned a difficulty for caregivers in understanding the “hidden” but wide-ranging impacts of vision loss (Table 3). Participating HCCP’s also discussed the variety of activities affected by VI, which makes it difficult to formally recognise or quantify what caregiving may entail. HCCP’s referred to the emotional impacts for both the PVI and caregiver, often compounded by a shared uncertainty about the future. They also discussed the difficulty of the PVI and caregiver understanding each other’s feelings and frustrations, for example, the balance of the caregiver providing support without impinging upon the independence or privacy of the PVI.

Table 3 “In your view, what makes caring for someone with a visual impairment different to caring for someone with another chronic health condition?” (38 responses).
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Themes generated from the Framework Analysis revealed perceived gaps or shortcomings in the provision of support for caregivers, including the need for improved emotional support for caregivers, improved information and advice about living with VI, respite care options, financial and benefits advice, and support with transport (Table 4). The HCCPs also drew attention to more systemic issues, such as the difficulties navigating and accessing available services, and the overstretched and underfunded nature of low vision services, which has created shortcomings in support available to PVI, let alone caregivers.

Table 4 “What do you perceive to be the most serious gap or shortcoming in the provision of support for caregivers of people with a visual impairment?” (36 responses).
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The two final open-ended questions concerned the additional training, information and resources HCCPs might find useful to support caregivers of their service users, and any other thoughts about improving support for caregivers, respectively. As both questions concerned suggestions for service improvement, the data were analysed in combination (Table 5). In response to the shortcomings perceived by participating HCCPs (detailed in Table 4), participants recommended improving the accessibility of information, both on- and off-line, and access to up-to-date details for signposting and referring caregivers to both local and national organisations. Regarding training, participants referred to the importance of raising professional awareness of caregivers’ issues by hearing directly from caregivers, and upskilling professionals to provide appropriate emotional support to caregivers. Participants advocated increased and more equitable funding for low vision and rehabilitation services, which can support caregivers as well as PVI. They also highlighted the importance of recognising that caregivers may need flexible support adapted to the complexity of their living and caring situations.

Table 5 Improving the support provision for caregivers.
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Discussion

The results from this exploratory study suggest that HCCPs would be receptive to further training and information on supporting caregivers, although our sample was likely to be more interested in this issue than non-responders.

Our findings suggest that HCCPs more commonly provide ‘informational support’ [15] (signposting or advice provision) for caregivers, than ‘emotional support’ activities. This may not be particularly surprising given that emotional support activities are likely to be more intensive, specialist, and not necessarily built into HCCPs’ professional roles and responsibilities. Indeed, people directly affected by VI or eye disease have discussed a lack of empathy from health professionals and an unmet need for emotional support [16, 17] and participants in the present study suggested such issues may also affect caregivers. Many participants mentioned how distress experienced by one member of the dyad may in turn affect the other, a phenomenon that has been demonstrated among PVI and their spouses in the USA [18]. No studies, to the authors’ knowledge, have directly assessed psychological distress among caregivers of PVI in the UK; however, caregivers of people with neovascular AMD have been found to show high levels of burden and distress on the Caregiver Reaction Assessment, even when approximately half of the patients had good visual acuity (of at least 6/12 Snellen) [19]. In the present study, there was a strong awareness of the psychological impacts of vision loss on PVI and caregivers, and HCCPs believed they could benefit from more time with PVI and caregivers to set expectations and provide meaningful advice. Many participating HCCPs also highlighted the potential value of, and their openness to, emotional support training, potentially in dialogue or collaboration with caregivers themselves.

Alongside emotional support, most participating HCCPs advocated additional practical support for caregivers; their ideas of the form this support could take were manifold, including a particular focus on respite care. Although no studies have focused wholly on respite care for caregivers of PVI, respite care more generally has been shown in randomised trials to moderately reduce caregiver distress [20], and qualitatively to yield concrete, often highly personalised psychological benefits for the caregiver [21, 22]. Many HCCPs also expressed the view that caregivers with whom they interact are struggling financially, and that current levels of financial support for caregivers are not sufficient and do not recognise the economic contribution of the caregiver. Indeed, informal caregivers, in general, save the UK government £132 billion annually [23]. More specifically, a recent Fight for Sight report estimates that informal care from family and friends of people living with sight loss amounts to an annual £8.5 billion (with the caveat that little is known about the financial impact on caregivers themselves, and so the real figure may be higher) [1].

Alongside suggestions for additional support resources or services for caregivers, there was awareness of the scarcity of existing resources for low vision assessment and rehabilitation for the PVI which itself may increase strain on caregivers. This underfunding also suggests it would be a challenge for existing services to expand to cover caregivers in a climate of increasing demand and limited funding. This was reflected in participants’ concerns that caregivers are not receiving timely and sustained access to support. Indeed, pressure on UK eye care services is predicted to increase in the coming decades as the number of people living with diseases like AMD, glaucoma, cataract and diabetic retinopathy increases [24]. This pressure – compounded by the COVID-19 pandemic [25] - is coupled with the decline in UK statutory health and social care services supporting PVI that has taken place over the last decade [26,27,28]. As such, experiences of caregivers’ access to support may be highly uneven and inequitable, described by one participant as the “postcode lottery”. Indeed, this is an observable phenomenon in other areas of eye health, for example in the variation documented across UK vision rehabilitation services [29]. Participants’ awareness of these pressures on low vision services suggests that although training and upskilling HCCPs to support caregivers could be helpful, there are fundamentally many systemic barriers to supporting caregivers. Considering the Capability, Opportunity, and Motivation Model of Behaviour (COM-B model) [30], an influential model of behaviour change, training could improve the ‘capability’ of HCCPs to work with caregivers; yet it would not necessarily address ‘opportunity’ barriers such as time constraints, which may leave little time for meaningful discussions with caregivers.

A majority of participants generally felt confident providing advice, support and information to caregivers. However, concerns about the sometimes disparate and inaccessible nature of information, and the complex system caregivers may need to navigate to reach appropriate support, were notable and reflect concerns expressed by PVI themselves [16]. Suggestions of consolidating information in one up-to-date ‘one-stop-shop’-style resource, and better clarification of referral pathways in order to facilitate caregivers’ access to the appropriate agency or service both at the local and national level, could potentially address these concerns. The benefits of ‘one-stop-shop' gateway-style models for information and advice provision have been explored in other areas, such as for people with autism spectrum disorder [31]. However, in a climate of under-resourced services, there may be uncertainties regarding how far these gateway services can guarantee substantive support at the end-stage of the pathway.

This was the first study to explore how UK healthcare and charity professionals work, interact with and support the caregivers of their clients, patients or service users with VI. As a small, exploratory study, there are a number of limitations. Firstly, there was inevitable selection bias, with participating HCCPs likely to be those more interested or involved in improving caregiver support. The survey was disseminated through charity partners and professional bodies, and there were differences in reach and uptake by different professional groups. For example, only one response was received from an ophthalmologist, compared with twenty responses from optometrists. Furthermore, we have no demographic data regarding non-responders, individuals who may have read the advert and participant information for the survey but chose not to participate. As such, the results have limited generalisability across the whole range of HCCPs working with visually impaired service users and clients. A further limitation is that our survey instrument was not a formally validated questionnaire, and there was limited scientific literature to guide its development. Although we consulted with members of the study’s patient and public advisory group and a number of health professionals to refine the instrument, we did not collect data on reliability, such as test-retest reliability. The Likert-type survey responses meant that participants were asked to, somewhat artificially, homogenise their varied professional experiences. For example, when asked if caregivers were struggling to cope, most participants (69%) responded “sometimes”, likely reflecting the broad range of conditions in which they may see caregivers and PVI, across a spectrum of ages, relationships, and health states. This, therefore, limits the granularity and precision of the survey data, although the collection of qualitative data helped to nuance findings from the quantitative section of the survey.

To conclude, our study suggests that HCCPs already tend to signpost caregivers to other services, and frequently provide caregivers with information and advice about coping with low vision. However, the findings suggest that professionals clearly perceive gaps in emotional support provision and tangible resources for caregivers, such as financial support and respite care. Several participants also discussed the manifold inequalities in access to and resourcing of caregiver support. In particular, participants expressed concerns around onward referral pathways and the caregiver’s timely access to appropriate support services. HCCPs highlighted the difficulties caregivers face in navigating an under-resourced and complex system, and the importance of better coordinating and streamlining information provision and the support pathway for caregivers. Participants were in favour of further resources, training and information to support caregivers. The co-design of an improved support service for caregivers, involving HCCPs and caregivers of PVI working together, could be a valuable avenue for future research.

Summary Table

What was known before

  • Previous research has established that some informal caregivers (e.g., relatives or friends) of people with visual impairment (PVI) may experience stress and require support themselves.

  • A small number of studies demonstrate that healthcare and charity professionals (HCCPs) working with PVI seek to be inclusive of their clients’ relatives and friends.

  • To date, no study has specifically explored how professionals involved in the support of PVI interact with and support the informal caregivers of their patients or clients with VI.

What this study adds

  • Many participating HCCPs already provide certain forms of support to caregivers of PVI, especially in terms of practical low vision advice or onward signposting.

  • Results from our exploratory study suggest that HCCPs would be receptive to further training and information on supporting caregivers both practically and emotionally.

  • Our qualitative findings suggest that systemic pressures and stretched low vision services for PVI constrain the support that HCCPs can provide for the caregivers of PVI.