Access to eye care and support services among adults from minority ethnic communities living with visual impairment in the United Kingdom

Background Despite an increased risk of certain eye conditions which can lead to visual impairment (V.I.), there is evidence of a greater delay to treatment-seeking among adults from minority ethnic communities (MEC). MEC adults may also be underrepresented on V.I. registers, within early intervention services, and among the beneficiaries of national V.I. charities. However, much of this evidence is outdated or anecdotal. Methods This secondary analysis of V.I. Lives survey data explored use of eye health and support services and mobility aids among a matched control sample of 77 MEC and 77 adults aged 18 and over from white communities (WC). Participants were matched on age, gender, UK region and urban/rural setting. Additional subgroup analysis was conducted for Asian (n = 46) and black participants (n = 22). Results There were no significant group differences in areas such as eye health service use, registration status, contact with charities, and level of practical support received. But MEC participants were significantly more likely than WC participants to have received direct payments from social services to cover their care needs, Χ2 (1, 154) = 8.27, p = 0.004, and to use apps on their mobile for mobility, Χ2 (1, 154) = 5.75, p = 0.017. In contrast, WC participants were significantly more likely to agree that they were getting the level of emotional support to get on with their life, U = 3,638, p = 0.010, to feel confident to ask their friends for support, U = 2,416, p = 0.040, and to have a guide dog for mobility, Χ2 (1, 154) = 3.62, p = 0.057, although the latter did not reach statistical significance. Within the MEC group, Asian participants were significantly more likely than black participants to use a long cane, Χ2 (1, 68) = 7.24, p = 0.007, but they were significantly less likely to agree that they had received the right level of support when they started to experience V.I., U = 236.5, p = 0.040. Conclusion The preliminary findings suggests that there is scope to increase support provided by V.I. charities and the V.I. register, although, contrary to existing evidence, there were no statistically significant differences in eye health service use, registration status and use of wider support services. Further research is required to confirm these findings and explore reasons for differences.


Introduction
The number of people living with visual impairment (V.I.) in the UK is estimated to increase from around 2 million to approximately 4 million by 2050 (1).Data from the 2021 UK Census shows that minority ethnic communities (MEC) make up an increasing proportion of the population in England and Wales (2).People from certain MEC have been found to be at increased risk of V.I. (3,4) and certain eye conditions which can result in V.I. relative to people from white communities (WC).For instance, people from Afro-Caribbean communities have been found to be at increased risk of primary openangle glaucoma across all age groups (5,6), while people from Asian communities may be at increased risk and earlier onset of diabetic retinopathy (7), including sight-threatening diabetic retinopathy (8), and cataract (9).As such, they are projected to make up an increasing proportion of adults living with V.I. in the UK (10).
In the UK, the eyecare pathway usually commences with an initial appointment with a community optometrist or general practitioner (GP), who may refer patients for diagnosis to secondary or tertiary eyecare.Diagnosis by an ophthalmologist may be followed by a treatment or monitoring phase, which requires regular eye appointments usually with an ophthalmologist or specialist community optometrist.Despite the increased risk of V.I. and eye disease, there is evidence of a greater delay to treatment-seeking among MEC adults.Research in the field of diabetic eye disease found that there was a significantly longer delay in attending an appointment at an eye clinic following a referral among Asian people than Black and White people and there was a significantly longer delay from referral (and also first appointment) to receiving treatment for their diabetic eye disease among Black people than Asian and White people (11).This suggests that people from Black communities may be waiting longer for treatment, while people from Asian communities may be waiting longer to receive a diagnosis.Research with adults from Indian communities explored barriers to use of further eyecare services (12).These included dissatisfaction with prior health service experiences, including long waiting times, limited awareness of how to access services, limited acceptance of Western medicine resulting in treatment being sought abroad, lack of time, health not being seen as a priority, and language.In addition, unhelpful perceptions of sight loss and limited awareness and understanding of eye conditions may result in fear and treatment-seeking only once symptoms were no longer manageable.For instance, cataracts were thought to require an undetermined period of maturing or 'ripening' until the condition was no longer manageable before treatment was thought necessary.Similarly, due to perceptions of glaucoma as being associated with aging, the perceived risk of experiencing glaucoma was low among younger African-Caribbean adults (13).
V.I. has been associated with a negative impact on activities of daily living (14,15), participation in sports and leisure activities (16,17), quality of life, mental health outcomes and social functioning (18)(19)(20)(21)(22)(23).A recent rapid evidence review found limited research on the impact of V.I. among different ethnic communities in the UK (24).People who have been diagnosed with a V.I. have several support options.In the UK, individuals with a moderate or severe V.I. can be registered as sight impaired (partially sighted) or severely sight impaired (blind).To join the register, people need to first be certified as sight impaired (partially sighted) or severely sight impaired (blind) by an ophthalmologist (25).Certification is based on best-corrected visual acuity and visual field (26).A copy of the certificate is sent to the patient's local council which will contact individuals with the offer to join the register (27).Registering a V.I. with local social services has a number of practical benefits including access to a needs assessment and appropriate support to remain independent, as well as financial concessions on transport, television and health services.There is evidence that MEC adults (28), including Asian adults (7) are less likely to be registered than WC adults.This may be due to limited awareness and knowledge of the benefits and registration process resulting from inhibition, particularly among older adults, and/or communication difficulties with clinicians (28).Some eye clinics provide early interventions services such as the Eye Clinic Liaison Officer (ECLO).These can offer advice and support relating to hospital appointments, registering a V.I., benefits, education, employment, housing, low vision aids or training, travel and social networks, and refer or signpost patients and their families to social services, sight loss charities or support groups following a diagnosis of irreversible sight loss (29,30).However, Slade (29) reports that only 3.6% of service users were from Black and other minority ethnic communities while 96.4% were from White communities, suggesting that MEC may be underrepresented in early intervention services.Finally, sight loss charities can provide vision rehabilitation and mental health support following diagnosis and beyond.But anecdotal evidence suggests that MEC adults may be less aware of support services and the benefits associated with them (31,32).This may result in unmet needs.For instance, qualitative research with Somali refugees who had V.I. found that language barriers may prevent these individuals from accessing statutory and other support resulting in unmet needs for support with activities of daily living including housework, and social isolation where participants were unable to leave the house without support (33).Anecdotal evidence also suggests that MEC adults may prefer to receive support from V.I. groups specifically for their ethnic community rather than national sight loss charities (31).This may be due to the cultural appropriateness of these services.Johnson and Morjaria-Keval (32) recommend hiring MEC staff, providing information materials in different languages, drawing on community partners to disseminate information, and providing funding and resources to community partners who offer support services within their communities, among other.To overcome negative experiences, they recommend building relationships and providing a continuous service.Overall, this suggests that service use may be lower among MEC, although the evidence is limited and/or anecdotal.There is further anecdotal evidence that guide dogs may not be an acceptable mobility aid among Somali community (34) and Afro-Caribbean communities (35).This raises important questions around the acceptability of available mobility aids among different communities, which is yet to be explored.
The current article forms part of a series of articles which explore the wider experiences of MEC adults living with V.I. in the United Kingdom.This article explores awareness and use of health and support services among a sample of MEC adults, including those from Asian and Black communities.This article uses secondary data collected in the V I Lives survey (36), a telephone survey of people with V.I. commissioned by the Royal National Institute of the Blind (RNIB), the Thomas Pocklington Trust (TPT) and Guide Dogs for the Blind Association (Guide Dogs).

Data and sample
Details of the survey and sample have been described elsewhere (36,37).Briefly, participants were recruited through a healthcare database, local and national charities, social media, and radio adverts.People without V.I. and those who did not speak English were excluded.Wave 1 of fieldwork took place from 17 December 2019 to 23 March 2020.Wave 2 of fieldwork ran from 14 August 2020 to 2 November 2020.
To control for the unequal subgroup sample sizes and statistically significant differences between MEC and WC participants, a matched control sample was drawn using R (38).WC participants were matched to MEC participants based on their age, gender, region and whether participant lived in rural areas vs. towns.

Materials
A questionnaire was developed for the survey covering a wide range of topics.V.I. severity was assessed using a participant's self-reported registration status (sight impaired/partially sighted or severely sight impaired/blind).Where participants were not registered, V.I. severity was determined with a set of questions adapted from the Life Opportunities Survey.These assessed the extent to which participant's had difficulties seeing ordinary newsprint at arm's length (near vision), the face of someone across the room ca. 4 m/12 ft.away (distance vision), and people or things in the periphery of their vision (peripheral vision).Finally, participants were asked about their legal driving status.Those who reported wearing glasses or contact lenses, were asked to rate near, distance and peripheral vision difficulties with glasses or contact lenses.Individual cases were reviewed and discussed by a panel to ensure they met inclusion criteria and to resolve inconsistent responses.
Ethnicity: participants were asked to indicate how they would describe their ethnic background from a list including white British, white other, mixed/multiple ethnic groups, Asian/Asian British, black/ African/Caribbean/black British and other ethnic group.
Use of health services: a single question asked participants if they remembered roughly when they last visited an eye clinic.
Registration status: participants were asked if, as far as they knew, they were registered as severely sight impaired or sight impaired.Further response categories included Registered but do not know which category and Not registered.
Awareness and use of charities: three questions asked participants to select from lists (1) the charities for people with V.I. they had heard of (2) the charities they had contacted or had contact with, and (3) the other charities that they had contacted or had contact with in relation to their V.I.
Support received: One question explored which types of support services participants had ever received in relation to their V.I.The extent to which participants' support needs had been met was explored in three questions which asked participants to what extent they agreed or disagreed that they got the level of practical support (a) and emotional support (b) they needed to get on with their life, and that they had received the right level of support when they started to experience sight impairment (c).Participants who were born with V.I. were not asked the last question.Participants were also asked to indicate how confident they were in asking for support from personal networks (family, friends, neighbors, network of visually impaired people they knew), authorities (government agencies, local councils), social workers/NHS services, wider support (charities, volunteers who visit people in their home) and religious groups.
Use of mobility aids: participants were asked whether they normally used any kind of mobility aid, such as guide dog or long cane.Interviewers then coded all aids used from a list.Those who did not have a guide dog or dual assistance dog were asked to indicate why this was the case.

Data analysis
Although the survey was not specifically designed to compare subgroups and despite low subsample sizes, the data analysis explored status within and group differences between MEC (n = 77) and WC participants (n = 77), as well as between the two largest MEC subgroups, participants from Asian (n = 46) and Black communities (n = 22), to gain a preliminary insight into service use among these groups.
For all variables, response distributions were calculated as counts (n) and proportions (%) for each subgroup.Subgroup analysis was performed using Mann-Whitney U tests for ordinal and chi-square tests, or Fisher's exact test where assumptions of expected cell counts were violated, for categorical variables.Data analysis was conducted using SPSS (39) except for Fishers' exact tests which were conducted using R.

Results
Table 1 provides an overview of participant characteristics by subgroup.Mean age was similar across all groups.A majority across all groups resided in a big town or city, specifically London, and were in employment.Around half of Asian, MEC and WC participants were female, and a majority were educated to degree-level and categorized as having severe V.I.In comparison, the proportion of females was higher among Black participants (59.1%), who were also more likely to be educated to Master's level and to be categorized as having moderate V.I.

Eye health services
There were no statistically significant differences between MEC and WC participants, U = 2877.5,p = 0.801, nor between Asian and Black participants, U = 481.5,p = 0.898, in the use of eye health services (Table 2).A slightly lower proportion of WC (53.4%) than MEC participants (57.3%) attended an eye clinic in the last year.Similar proportions of Asian (57.8%) and Black participants (57.1%) visited an eye clinic within the last 12 months, with around a third in both groups attending an eye clinic in the last 6 months.Two Black participants reported that they had never visited an eye clinic.These had mild and moderate V.I., keratoconus/corneal dystrophy and nystagmus, and neither had registered their V.I.

Registration status
There were no statistically significant associations between ethnicity and being registered or not registered, neither when comparing Asian and Black, nor when comparing MEC and WC participants (Table 2).Being unregistered was most common among WC (35.1%) followed by Black (31.8%) and Asian participants (28.3%).In addition, three WC and one Asian participant were registered but did not know in which category.A majority of unregistered Asian, Black and WC participants had mild V.I. (84.6, 85.7 and 84.6% respectively).The primary cause of V.I. among unregistered Asian patients was keratoconus/corneal dystrophy (30.8%), while unregistered Black and WC participants primarily had "other", unlisted conditions (28.6 and 37.0% respectively).

Support received
The survey assessed the types of support received, the adequacy of emotional, practical and initial support, as well as confidence in asking different sources for support.In terms of types of support received, MEC participants were four times more likely than WC participants to have received direct payments from social services to cover their care needs, 20.8% vs. 5.2%, Χ 2 (1, 154) = 8.27, p = 0.004, Cramer's V = 0.232.There were no further statistically significant associations between ethnicity and different support services available to people with V.I., neither for Asian and Black participants, nor for MEC and WC participants (Table 2).Although not statistically significant, WC participants (27.3%) were more likely to have received none of the listed support than MEC (15.6%), including Asian (17.4%) and Black participants (13.6%), but they were more likely than the MEC groups to have received a guide dog or other services from Guide Dogs as well as personal care and support from social services.All four WC participants who had been referred by Guide Dogs reported having received a guide dog or other support from Guide Dogs.In contrast, Black participants were more likely than other groups to have received support from a low vision clinic, the RNIB helpline or other specialist advice services and ECLOs, while Asian participants were more likely than other groups to have received rehabilitation services from their local authority and direct payments from social services (Figure 1).Assessment and advice from a low vision clinic followed by support from the RNIB helpline or other specialist advice services were the most common types of support received by participants in all groups.Half of Asian and WC participants and over two thirds of Black participants had received this.
In terms of the extent to which the support received was adequate, MEC participants were significantly less likely to agree that they were getting the level of emotional support to get on with their life, U = 3,638, p = 0.010.Eight in ten WC participants agreed with this compared to just over six in ten MEC participants (Table 3).Although not statistically significant, MEC participants were also less likely to agree that they got the level of practical support they needed to get on with their life but slightly more likely to agree that they got the right level of support when they started to experience V.I.While similar levels of Asian and Black participants agreed that they received sufficient emotional support (63.0% vs. 68.2%respectively), 54.6% of Black participants agreed that they received sufficient practical support compared to 67.4% of Asian participants, but 45.5% of Black participants agreed strongly with this compared to just 26.1% of Asian participants.At the other end of the scale, 21.7% of Asian participants disagreed that they received sufficient practical support compared to 36.4% of Black participants, but none of the Black participants disagreed strongly compared to 6.5% of Asian participants.These differences were not statistically significant.However, Black participants were significantly more likely to agree and agree strongly than Asian participants that they had received the right level of support when they started to experience V.I., U = 236.5,p = 0.040.Overall, around a third of Asian and Black participants did not believe Not at all confident 10.9 (5) − they had received the right support when they lost their sight, nor the practical or emotional support they needed at the time of the survey, although the proportion of Asian participants who did not receive sufficient emotional support was lower (21.7%).WC participants were significantly more likely to feel confident to ask their friends for support than MEC participants, U = 2,416, p = 0.040 (Figure 2).There were no further statistically significant differences in the extent to which participants felt confident to ask a range of sources for support.While Black participants were more confident than Asian participants to ask family for support, and MEC participants were more confident than WC participants to ask religious groups for support, these differences did not reach statistical significance.Asian participants were generally less confident than Black participants in asking for support, except for their network of people with V.I. and charities.Black and Asian participants felt most comfortable asking family and friends for support.While Asian and WC participants felt least confident to ask religious groups for support, Black participants felt least confident asking local councils for support.

Awareness of and contact with charities
There were no statistically significant associations between ethnicity and contact with V.I. and other charities (Table 4).Support from V.I. charities was highest among WC and lowest among Black participants.Over a third of Black (36.4%) and Asian participants (34.8%) had not had any contact with any of the charities compared to 28.6% of WC participants.While the latter had had contact with an average of 1.78 (SD = 1.85, range 0-10) charities, this was slightly lower for Black (M = 1.73,SD = 2.33, range 0-10) and Asian participants (M = 1.50, SD = 1.63, range 0-5).Over half of participants in all groups had had contact with the RNIB, while contact with SeeAbility and Blind Veterans

Discussion
This article provides a preliminary insight into awareness and use of V.I. services among a sample of MEC, including Asian and Black, participants.
Overall, there were few statistically significant differences between Black and Asian, and a matched control sample of MEC and WC participants in the support they had received.Among these, MEC participants were significantly more likely than WC participants to have received direct payments from social services to cover their care needs, but they were less likely to be aware of the Macular Society, agree that they got the level of emotional support they needed to get on with their life, and feel confident in asking friends for support.
Within the MEC group, Black participants were significantly more likely than Asian participants to agree that they had received the right level of support when they started to experience V.I.Although neither was statistically significant, WC participants were more likely to agree that they received the practical support they needed, but they were least likely to agree that they had received the right level of support when they developed their V.I.There were further statistically significant differences between groups in the mobility aids they used: despite previous findings from qualitative research conducted in the UK that older MEC adults were less likely to have up-to-date technological devices (55), MEC participants in this sample were three times more likely to use apps on their mobile than WC participants, who, in turn, were just under three times more likely to have a guide

FIGURE 1 Support
FIGURE 1Support received by subgroup.

TABLE 2
Eye care service use, registration status and type of support received, by subgroup.For the purpose of statistical comparison the three categories relating to registration (as severely sight impaired, partially sight impaired, and do not know category) were combined.Subgroup analysis explored associations between groups and being or not being registered.MEC = Minority ethnic communities, WC=White communities, ECLO = Eye clinic liaison officer, LA = Local authority, RNIB = Royal National Institute of the Blind, GD = Guide Dogs for the Blind.Statistically significant results are shown in bold.Results of Fisher's exact tests are shown as p-values only.

TABLE 3
Extent to which support needs were met and sources of support, by subgroup.

TABLE 4
Awareness and use of charity support, by subgroup.
MEC, Minority ethnic communities; WC, White communities; RNIB, Royal National Institute for Blind People; TPT, Thomas Pocklington Trust; BVUK, Blind Veterans UK.Statistically significant results are shown in bold.Results of Fisher's exact tests are shown as p-values only.

TABLE 5
Use of mobility aids and reasons for not having a guide dog, by subgroup., Minority ethnic communities; WC, White communities.Statistically significant results are shown in bold.Results of Fisher's exact tests are shown as p-values only. MEC