Siân Biddyr, Eye Health Promotion Manager, RNIB Cymru

Eye health care in Wales: Increasing awareness of primary eye health care available to people from Black and Minority Ethnic communities.

Siân Biddyr, Eye Health Promotion Manager, RNIB Cymru

Dr Bablin Molik, Minority and Ethnic Communities Development Officer, Sight Cymru

Peter Garwood, Optometric Lead, Public Health Wales

Dr Nik Sheen, Eye Health Examination Wales (EHEW) Clinical Lead, Cardiff University School of Optometry and Vision Sciences

Dr Siân Griffiths, Consultant in Public Health Medicine, Public Health Wales

Dr Tom Porter, Consultant in Public Health Medicine, Public Health Wales

This report is a culmination of work undertaken by a team from RNIB Cymru, Public Health Wales, Sight Cymru,Wales Optometric Postgraduate Education Centre at Cardiff University School of Optometry and Vision Sciences and Cardiff and Vale University Health Board.
1. Aim

The aim of the project was to increase public awareness of eye health and the free eye health care available to people from Black and Minority Ethnic (BME) communities in South Cardiff.

This included increasing awareness of:

• Eye Health Examination Wales (EHEW), an extended eye examination funded by Welsh Government, available for at risk groups
• eye health and eye disease.

Additionally, the project aimed to determine if increased awareness in BME communities resulted in an increase in service use and to explore the perceived barriers to accessing primary eye care services amongst the study population.

The results of the project are intended to inform best practice of ways to engage with specific Asian and Black communities on eye health and to understand the barriers to attendance at primary eye care for these communities.

2. Introduction

Approximately 1 in 10 people from a Black and Minority Ethnic (BME) background over the age of 65 will experience serious sight loss [1]. They are more likely to present with advanced disease and are more likely to become blind as a result of developing the condition [1,2]. Asian and Black ethnic groups are at greater risk of eye diseases, such as glaucoma and diabetic retinopathy compared to other ethnic groups [3-15].

Evidence also suggests that Asian and Black communities in the UK are less likely to attend for primary eye care appointments, thereby compounding the problem [16-20].

It has been suggested that eye care awareness campaigns in Black and Asian communities have the most economic impact of all interventions designed to prevent sight loss because their access to eye care services is lower than the average population and their undetected eye conditions are more likely to be severe [2].

In Wales, Asian/Asian British account for the second largest ethnic group with 2.3 per cent of the population. Black/African/Caribbean/Black British are fourth with 0.6 per cent of the population. In cities, such as Cardiff, Black and Asian ethnic groups make up a much larger percentage of the population with 10.4 per cent in total [21].

In Wales, an eye care service exists for Black and Asian ethnic groups to have a free, at the point of access, eye health examination. This Eye Health Examination Wales (EHEW) is an eye care service provided by optometrists (opticians) in the community and is funded by Welsh Government. Previously this service has been underused by these groups [22].

3. Methods

The project was planned, organised, implemented and evaluated with findings written up in a report, over a three year period from September 2012 to 2015. The methodology involved several stages:

• Recruitment and training of community champions so that they could deliver eye health messages to BME local communities.
• The delivery of eye health messages to five specific communities during a six months project implementation phase. The communities targeted included: Indian/Gujarati, Pakistani, Chinese, African-Caribbean and Somali groups. The ethnic groups chosen were those with the highest population figures in the area in addition to research available showing that these groups were at particular risk of certain eye conditions. Additionally, the groups selected were dependent on the availability and commitment of a community champion to work within that community.
• Qualitative focus groups to ascertain opinions, behaviour or motivation for attending or not attending eye examinations; one was held with the community champions and three with different BME community groups.
• Qualitative interviews with optometry practice staff to ascertain opinions, behaviour or motivation for facilitating BME groups to attend for eye examinations.
• Quantitative evaluation of the number of patients from BME groups attending for an EHEW at optometry practices in the project area.

3.1 Community champion training

Nine community champions attended two days training plus four days discussion workshops on eye health awareness delivered by the project organisers from RNIB Cymru, Sight Cymru and Cardiff University.

Following the training, six of the champions decided to continue with the project. They were asked to identify four or more relevant activities they could organise within their communities to deliver eye health messages over a six month time period.

These activities were wide ranging and included: major community events (eg, Diwali for the Gujarati community and health events for the Somali community), meeting with community groups such as local coffee morning groups, prayer groups or carers groups, or having informal one to one conversations with individual community members.

3.2 Implementation of eye health messages

Community champions, the Clinical Lead for the Eye Health Examinations Wales (EHEW) service and the project organisers delivered eye health awareness talks, question and answer sessions, and disseminated information to approximately 1800 people during a six month intervention period.

3.3Qualitative focus groups

The focus group with the community champions and community groups were mixed in gender and ages, mainly 40 years + (although specific ages were not recorded). They included representatives from Somali, Gujarati, Pakistani, Chinese, African-Caribbean and Yemini communities.

A focus group interview schedule was used to ensure that each group was asked a consistent series of questions. The questions were open questions aimed at encouraging participation and discussion. Questions were agreed in advance and tested on a pilot group of volunteers.

At least two trained facilitators attended all of the focus groups with one asking the questions and the other asking supplementary questions. A third person from Cardiff and Vale Health Board observed and took notes. The groups were also audio recorded. On average the focus group discussions lasted 75 minutes, with a total of 600 minutes of data collected. Notes were written up and audio recordings were transcribed to support the data. The information was analysed using a thematic approach [23].

3.4Qualitative interviews with optometry practices

Two optometric practices were selected for interview where uptake of eye examinations from Asian and Black ethnicity was higher compared to other practices in the area. This was to explore possible reasons for high numbers of attendances so that good practice and learning could be shared.

Both practices were contacted over two days in February 2015 to discuss how they operate the EHEW service with regards to patient’s eligibility for the enhanced eye care service on the basis of their ethnicity. Six questions were asked on themes of enabling and facilitating attendance of BME communities to the practice balanced against perceived barriers.

3.5 Quantitative evaluation

Data for the project on numbers of EHEW examinations were collected by the NHS Shared Service Partnership and collated by the EHEW Clinical Lead and the Optometric Lead in Public Health Wales. Welsh Index of Multiple Deprivation data was collated by the Public Health Wales Observatory.

The number of patients attending for an EHEW specifically because their ethnicity puts them at increased risk of eye disease was collected over an 18 month time period (April 2013–September 2014) in Cardiff and Vale Health Board and in the Cardiff City and South regions where the interventions took place. Additionally the numbers of patients from Black and Asian ethnic groups that attended an optometrist practice for any reason was collected for the same time period.

In order to allow for the potential confounding effects of national promotional work, equivalent uptake and uptake rates were calculated for an age/ethnicity matched population of a similar size in a different Health Board area. However, numbers attending in other equivalent Health Boards was typically less than 15 and so meaningful data could not be obtained.

4. Results

Qualitative evaluation involving focus groups with community champions

The main points raised in the focus group with the community champions is summarised under the following themes:

Training to deliver eye health messages at community events

The champions were asked what they had learned and whether they felt that it had equipped them with sufficient knowledge and skills to be able to deliver eye health messages to their communities.

• “Link up with grass roots community groups and voluntary groups, they can organise us to attend any events and include eye health talks. People will be coming to the events for a variety of messages. People who come want to be referred straight away. Need to integrate into local grass root events.”
• “Asking the Imam at the mosque if I can have five minutes to talk (to the community) and getting the Imam to say how important eye health is.”

Giving talks about eye health

Various ways in which eye health messages could be given out to communities was discussed and that giving talks to groups or one to one was particularly effective.

Some champions felt confident in giving the talks themselves whereas others preferred inviting one of the project organisers along to talk about eye health.

• “…I see people one to one and am able to make them aware of what they need. Explaining the importance of getting the check before it is too late.”

All the champions and community groups agreed that the project had encouraged people to go for an eye test and that even if people didn’t make an appointment immediately, it had increased awareness of the importance of regular testing.

• “….the talks encouraged people to go for an eye test.”

Providing training for staff in optometric practices

One of the issues that the champions discussed was the importance of optometrists and reception staff at practices raising awareness of EHEW to relevant patients. They felt that staff didn’t provide information about the examination and could benefit from more training.

• “…staff are not aware…”.
• “They don’t explain that because of my ethnicity I am entitled…there is a lack of explanation.”
• “…..also GP receptionists should be trained”.

Eye Care Wales website

The training for the community champions involved encouraging the community champions to use the Eye Care Wales website.

However the champions said that they hadn’t used the website as out in the community they often didn’t have access to the internet. Also they didn’t feel that the community members themselves would be able to use it without assistance, particularly people who could not speak English.

• “…most people you would have to do it for them.”

Limitations of being a volunteer

Even though the champions found the training useful and were keen to give out eye health messages in their communities, they mentioned that they felt the project was limited because they were volunteers. They said that they sometimes found it difficult fitting it in with their other work and life commitments.

• “We all have busy lives and demanding jobs, anything voluntary sometimes becomes secondary. We need further grants to take the service further.”

Impact of training

The champions were asked about the impact of the project on them and what they had gained as a result of being involved.

• “It empowered us with knowledge we are able to pass on.”

One of the champions talked about how he and his children had recently been for an eye examination.

• “I have been to the optician and I take the children. I talk to my family about eye health and its importance. My son was being teased at school and not wearing glasses, after a long discussion he has started using them.”

When the champions were asked if they would continue promoting eye health messages all said yes.

• “I continue to express the importance of the message and it is being done for free.”

Qualitative evaluation involving focus groups with community groups

Some of the themes are based around the questions asked whereas others were issues that were emphasised repeatedly in the discussions.

Language

One of the main barriers that participants talked about was language.

• “Language can be the biggest barrier.”

This ranged from booking the appointment to attending for an eye examination. The Somali and Guajarati communities also talked about older people having to rely on other people to take them to the appointment due to physical, language or literacy barriers.

• “If there is a language issue they have to wait for someone else to take them.”

The use of interpreters was discussed.

• “Interpreters can be difficult to work with and it’s not always good to take family, they may not know the technical words”.

Understanding costs of eye tests

A key barrier noted by all communities was a general lack of awareness that their eye exams were free. They felt that there wasn’t sufficient information available about this and talked about opticians often giving the wrong message regarding costs of eye exams. This was an issue discussed by both Somali and African-Caribbean communities.

• “Lack of awareness about free eye exams.”

Participants said that from their experiences, opticians didn’t promote EHEW.

• “They don’t always inform you that eye exams are free or you don’t get feedback from your test. Also they keep the tests from previous years so if you go to a different optician they will not see any differences.”

Fear and not doing anything until there’s a problem

Participants said that many individuals may be afraid of what the eye examination might reveal or that they wouldn’t take any action until they experienced a problem.

• “Some are in denial and leave it as long as possible. It makes you think you are getting older.”

The Somali champion highlighted that male members of the community thought that admitting they had problems with their eyes might be seen as a weakness to their families or communities.

• “People don’t ask for help until they need it. Communities are very resilient and don’t show concerns until the later stages. Males do not show weakness in a cultural context.”

Ways to promote eye health and EHEW to BME communities

A common theme was that communities did not realise the EHEW eye test was free for them.

• “Mention it’s a free eye test.”

Both the communities and the champions felt that the RNIB Cymru eye health leaflets provided for the project were useful. However, if more leaflets were going to be produced, they thought that it would be useful to ensure that these were translated into different languages.

• “They should have leaflets in different languages.”

The leaflets and posters needed to include simple text and images. They should be available at public locations, eg, schools, libraries, on buses, GP surgeries, community venues such as supermarkets and places of worship.

Other ways to publicise information was noted within the Guajarati community. This included TV, local radio/TV channels in the community language and local free newspapers.

All groups agreed that it was very useful to receive messages verbally from a professional or someone well trained in the field. Participants thought that talks to both small and large groups were very beneficial.

• “We like to keep up to date, personal face to face… is the best, where you can ask questions to a well-informed person.”

Optometry practice interviews

Two optometric practices in the project area were interviewed with high numbers of BME patients attending. Key points highlighted were:

• Training staff to ensure prompt assessment of patients’ eligibility for EHEW
• Employing an optometrist and staff that were able to speak some of the languages
• Using family members as interpreters where possible
• Promoting services on local radio (radio Ramadan) and including messages to allay any fears about dilating pupils during fasting
• Being aware that patients found the services confusing particularly the difference between EHEW and diabetic retinopathy screening services.

Quantitative evaluation of data for uptake of eye examinations