Language and ethnicity are current barriers to good quality patient care for people with arthritis, says Dr Nasimah Maricar

The UK is a wonderfully diverse place to live. It may not be perfect – improvements are needed in many areas – but awareness is growing and great strides are being made along the lines of inclusivity and opportunity.

However, the pandemic highlighted that almost all minority ethnic groups had higher risks of dying from COVID-19 than the white British majority of a comparable age. Similarly, there is a higher prevalence of arthritis and musculoskeletal conditions among some ethnic minorities compared with white people.

Black, Asian and minority ethnic groups in the UK are disproportionately represented due to risk factors including levels of physical inactivity, vitamin D deficiency, poverty, socio-economic factors, working in manual occupations, and pre-existing long-term conditions such as diabetes.

One of the symptoms of arthritis is that the joints become stiff and difficult to move due to tightness of the surrounding structures, such as the joint capsule, tendons, muscles and ligaments. Pain can also inhibit the strength of the surrounding muscles and make them weak.

Pain arising from arthritic conditions may be chronic and significantly impacts the lives of its sufferers. Joint and muscular pain may severely impair normal day to day activities, and over time many people can become increasingly disabled by their arthritis.

While many patients engage well with treatments to promote joint and muscle integrity through exercises and physical activities, this may be difficult in people who do not speak English – something we would like to improve to reduce any health gaps and address health inequalities within the NHS.

Exercise and physical activity

When we have pain around an area in the body such as the knee or the shoulder, the usual response is to avoid moving it to prevent pain. Many people fear that movement and physical activity will damage the joint, become overprotective and start to reduce daily activity so as to avoid pain. Unfortunately, this leads to the joints becoming stiffer, soft tissues tighter, and muscles getting deconditioned and weaker. As one does less over time, the paradox is that the pain gets worse.

Improving pain

When we move our joints in the arms and legs, we promote better blood flow into the joints, which encourages repair and healing. When we move and the joint surfaces glide against each other, this stimulates natural flow of lubrication on the joint surfaces and make the joints easier to move. Exercise and physical activity can strengthen muscles and improve their endurance to work for longer periods before getting fatigued.

Stronger muscles, reduced joint stiffness and increasing ease of movement helps reduce pain and allows people with arthritis to be able to engage with more activity before they experience pain. For example, if previously someone experiences pain after 10 minutes of walking, now their pain will only come after 20 minutes of walking. There is also research evidence that shows exercise and physical activities can slow down or reduce progression of rheumatoid arthritis and osteoarthritis.

Available resources

Most information about arthritis, exercise and physical activity is available in the English language while exercise classes are predominantly conducted in English, which often excludes non-English speaking people from joining. We would like to improve resources to encourage engagement in exercises and physical activity among people who do not speak English. However, we do not yet know whether making booklets and/or classes available in their native languages are the best way to improve engagement.

Barriers and enablers

Before we put strategies and programmes in place to improve the engagement of non-English speaking people with exercises and physical activity, we need to understand any barriers along with enablers to promote engagement.

Public involvement

In 2020 we conducted a series of discussions and meetings with people from the Black, Asian and minority ethnic (BAME) communities who either have arthritis or family members with arthritis, and community leaders, including GPs. Participants contributed ideas and suggestions on how we could design a project that will help us to identify barriers and enablers to engagement of non-English speaking people in exercise and physical activity. Patients and the public have been involved in each step of the project including its design, what information we should retrieve, how to interpret information within a cultural and social context, and how the findings could be shared with the public.

Shaping the study

Language barriers are highlighted as a main hindrance to managing chronic conditions. We also understand there can be significant cultural differences and belief systems among the various minority ethics groups that may influence engagement with exercises and physical activities.

Participants encouraged us to explore barriers and enablers to exercises and physical activities among one community rather than across different ethnic minorities. This will allow unique cultural and ethnicity factors to be better identified that will help to make future intervention more focused and acceptable.

For the first series of the project, we have looked at the members of the South Asian community who may not be fluent in the English language, as this group represents a significant proportion of the local population.

The project so far

We have recruited 12 people from the South Asian community who have chronic joint and muscle pain who do not speak or understand English. One-to-one interviews were conducted in their spoken languages (Urdu, Punjabi or Hindi) by rheumatologists who speak those languages.

During the interviews we explored their understanding and concerns with regards to exercise and physical activities. We asked participants to share their opinions and suggestions on how we can help them, what they want from health professionals and what support they may need.

While we are still completing our analysis from the interviews, emerging themes point to a lack of knowledge among patients, who want more support around exercise, as well as a need for clinicians to be more proactive in supporting them to increase their physical activity.

We are now approaching the completion of the study and hope to obtain further valuable insights during our analysis that can help us understand better what effective strategies we could introduce in hospitals and GP practices to help South Asian patients who have limited proficiency in English language.

Future work

We plan to replicate similar studies in other ethnic groups, including hard to reach communities. These efforts will help us to deliver support and advice that is client-centred and promote effective resource management that is culturally and ethnically sensitive and appropriate. The end result will be improved care for people with arthritis, whatever their ethnicity and language – and that means better quality of life.

About the author: Dr Nasimah Maricar is a Researcher in NIHR Manchester Biomedical Research Centre’s (BRC) Musculoskeletal (MSK) theme, and Advanced Musculoskeletal Practitioner at Salford Royal Hospital, Visiting Clinical Fellow, Manchester Metropolitan University

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