Evidence
[Narrator 1] Your chest is in pain. Something simple as breathing, becomes really difficult.

[Narrator 2] When my son first had his respiratory arrest, a lot of people said ‘oh don't say he's had an asthma attack, he's asthmatic’.

[Asma Dassu, Asthma Sufferer] I remember a large part of my life being spent in hospital. A good first 10 years of my life spent in hospital. Me feeling guilty about the fact that my mum had to drop so much, her work etc to be in hospital with me. I used to write sorry letters to my mum, whenever I was in hospital I'd write, you know, I'm really sorry that you had to look after me for so long again. [Looks at photo album] In this album you've got pictures of me and you can see I'm quite healthy, happy, smiling and then there's this picture of me, and I'm having an asthma attack there. I'm really trying to draw some oxygen in, my skin tone, my eye sockets, you know, I don't look well at all.

[Anna Murphy, Consultant Respiratory Pharmacist, Leicester] Asthma is a very serious condition, people die from asthma. We know that’ll be about 1,400 people die each year of asthma, and what's really frightening about that is that majority of those deaths are actually preventable. We've got a lot of people walking around in the community, not realising that their asthma could be better controlled. We've got people being admitted to hospital, and from the South Asian community we know that is three to five times more likely.

[Monica Lakhanpaul, Professor of Integrated Community Child Health] MIA was a three-year project to find out how we can improve management of asthma for South Asian children. We took away all the presumptions about what works, what doesn't work and we just went back to the people themselves and asked them; how could we help you, where are the problems, what does asthma mean to you? So in the South Asian community the word asthma doesn't exist, and nobody really thinks about that, they think that if we translate something into a leaflet, it’ll all be fine. So we went into the mosques, into the temples, into the community centres. We went into the places where they felt comfortable. So rather than traditional academic work, where we sometimes invite people to our ivory tower, we went out and reached out to the people.

[Anna Murphy] Ninety percent of those people who die from asthma we can prevent. So we have a duty to actually look at how we can prevent people from having this morbidity from the disease. People have become complacent about it, you know, it's only asthma. Well it's not only asthma, it needs to be treated, it needs to be taken seriously.

[Monica Lakhanpaul] Health care professionals thought that they knew how to diagnose asthma and, and that was, it was simple they knew what to do, we have guidelines that they should be following. The families actually felt that diagnosis was the biggest problem. They didn't trust the doctors or nurses, they got different information from different people, and they felt that if they don't actually understand the diagnosis, how are they going to move to the next step of taking the medicine for a diagnosis that they don't actually understand in the first place.

[Asma Dassu] In the South Asian community, Asians really believe that you shouldn't get cold, you know, you shouldn't get, like if you got caught in the rain and you got wet, you know, you'll die [laughs] all these sort of, these beliefs. There are always people coming with all sorts of homemade Asian remedies, if you do this, if you do that, you know, your child will get better. There was people calling up saying, we've found this, sort of, herbal treatment we're going to bring it over. If I got a chest infection, apply barn leaf to her chest and it will draw out all the mucus, and all the bad stuff... yeah.

[Monica Lakhanpaul] We found that there's a public awareness issue and the children, some of them, were telling us that they were sitting at home with symptoms and not being taken to the doctor, so children were suffering silently, really, at home. So I think communication is one of the big issues that we found. Finding people that the community feel they can trust, and talk to about their problems, who understand their culture, their perceptions, what they believe in, and talk to them about things that matter to them. I think it's a two-way process, we need to be educating the community but we also need to learn from the community, and that's what our project was about. Finding out what they need to know, and how we can tailor our information and our education to overcome some of the barriers that they're facing.

[Anna Murphy] People with asthma can live a normal life. They should be able to run, they should go to school, they should be able to work. There should be no impact on their life apart from having to take their medicines on a daily basis.

[Asma Dassu] I'm really glad that I took inhalers regularly, I manage my asthma because I'm 34 now and I'm in a really good place. There's nothing holding me back because I managed my asthma, and asthma shouldn't hold anybody back, it shouldn't ruin lives. You have to ask yourself, do you want your life to be put on hold? Do you want to spend weeks in hospital? Do you want to not, you know, miss out on school or work? Or would you rather just take a couple of puffs from your inhaler every day and get on with it. Get on with your life, see your family, see your friends. And I know what choice I'd make, I would take that inhaler in the morning, wherever I needed to and enjoy my life.

[Anna Murphy] We know that we can manage asthma. We know that South Asian communities are more likely to be admitted to hospital and have more morbidity associated with asthma. Let's get in there, let's improve the quality of life of this population.

[Monica Lakhanpaul] MIA has collated together a huge amount of evidence over three years. We don't want MIA to sit on a shelf somewhere, we want people to read it, we want people to act on it, and we want people to follow through and take it to the next step.

[Text on screen] MIA - Management & Interventions in Asthma NIHR Report 09/2001/19

Research Team:
Professor Monica Lakhanpaul, UCL Institute of Child Health
Dr Deborah Bird, University of Leicester & Royal Free London NHS Foundation Trust
Professor Lorraine Culley, Dr Nicky Hudson, Mark Johnson, De Montfort University, Leicester
Dr Noelle Robertson, University of Leicester
Melanie McFeeters, University Hospitals of Leicester NHS Trust
Dr Charlotte Hamlyn-Williams, UCL Institute of Child Health
Narynder Johal, Parent Representative

With grateful thanks to:
MIA Advisory Team, Families & Healthcare Professionals, The University of Leicester

Funded by the NIHR HS&DR Programme (09/2001/19)
The views and opinions are those of the authors and do not necessarily reflect those of the HS&DR Programme, the NIHR, the NHS, or the Department of Health.

Working in partnership with a British South Asian community could improve control of children’s asthma

Children from South Asian communities fare worse than others when they have asthma. They are diagnosed later and are more likely to need emergency treatment. Researchers worked with South Asian communities in Leicester to understand what needs to be done to increase asthma diagnoses and improve management among children.

The Management and Interventions for Asthma (MIA) project was a partnership between the researchers, healthcare professionals and Indian, Bangladeshi, and Pakistani communities. This paper describes how the partnership worked.

Researchers first conducted a literature review to explore the existing evidence on the barriers these groups face in accessing asthma care. They ran focus group sessions with members of the community; and interviewed healthcare professionals and families with a child with asthma. Professionals and the community and professionals then worked together to co-develop a management programme, called ‘ACT on Asthma’. This approach targets factors that prevent South Asian children with asthma from being diagnosed and treated.

The close partnership with the community, which included the voices of the children, was essential to ensure the project was effective. This way of working with marginalised communities could be used to co-develop acceptable interventions for other conditions. 

Further information on asthma is available on the NHS website.

What’s the issue?

Asthma is a common lung condition that causes occasional breathing difficulties, such as wheezing, shortness of breath, chest tightness and a cough. One million children in the UK receive treatment for the condition. Typically, they have a management plan which includes effective medications (given by inhaler) and training in self-management for themselves and their families.

In the UK, people from South Asian communities have worse outcomes from asthma than others. They are diagnosed later, are more likely to have symptoms, be admitted to hospital, and die from the condition. 

One reason for this could be that people from this ethnic minority group face barriers to accessing good quality healthcare. Families and communities may need more support to navigate the healthcare system and to develop a better understanding of asthma, how it affects children and what treatment is available. They are also underrepresented in clinical research and trials and their voices may not be included when health promotion or treatment strategies are developed.

This study worked in close partnership with the South Asian community to explore the social and cultural factors influencing asthma management in children. The researchers wanted to examine whether a partnership with the community could help design an improved approach to diagnosing and treating asthma in British South Asian children. 

The research was part of the larger Management and Interventions for Asthma (MIA) study.

What’s new?

Based in Leicester, the MIA study was a joint enterprise between researchers, healthcare professionals and communities. The research team included two parents of children with asthma, two children, and members of the community known as community facilitators. They were involved at all stages of the project.

The partnership was intended to minimise the traditional power imbalance between researchers and the community. All groups - including children - were engaged in co-developing the ACT on Asthma programme. 

The study had four parts.

    1. An evidence review assessed current interventions and looked at previous work on barriers to (and promoters of) good healthcare for children with asthma in ethnic minority communities. The key partnerships were set up at this stage. 
    2. The community study consisted of eight focus groups with 63 members of the South Asian community and a further 12 key people recruited via community organisations. Groups took place in both English and either Urdu, Punjabi, Hindu, or Guajarati. Researchers aimed to understand how asthma was viewed by the community at large. They explored influences such as culture, education, religion, and deprivation on the behaviour of children with asthma, and their families.
    3. The study of families and healthcare professionals involved 30 South Asian families and 37 healthcare professionals treating children with asthma. One-to-one interviews were carried out in the interviewee’s choice of language. A group of 14 White British families were interviewed as a comparison. The research showed that South Asian families lacked understanding of the causes of asthma, its triggers and recognition of symptoms, treatments, and outcomes. It also suggested that healthcare professionals need to have a better understanding of cultural or religious practices that may be a barrier to seeking help or following treatment advice.  
    4. Interventions were developed by combining all the evidence and through a series of workshops, led by community facilitators in community centres. There were two workshops for South Asian families, one for White British families, and one for healthcare professionals. 

An initial intervention was developed by a partnership of all parties. This meant that the end users, the children with asthma and their families, were directly involved in shaping the intervention. It was refined after further discussion in smaller workshops. 

The final version was called the ACT (Awareness, Context - cultural and organisational - and Training) on Asthma programme. It is a management pathway to drive asthma diagnosis by tackling barriers faced by patients and healthcare professionals. Its four arms are:

    • raising awareness of asthma among communities and healthcare professionals
    • training and education for communities and healthcare professionals
    • clinical support
    • advice centre – a physical point of contact for patients and their families.

Why is this important?

The researchers believe that working in partnership with the community has led to a tailored intervention that can be used for improving diagnosis and management in these children with asthma. It takes into account the community’s cultural and educational backgrounds, beliefs, and desire for autonomy. 

This model could enable effective collaboration with the UK’s South Asian population. It uses a bottom-up approach that places the concerns and issues of families at its centre and includes the perspectives of healthcare professionals. It outlines practical steps that are necessary and culturally acceptable.

Such a partnership between parents, community facilitators and researchers can encourage long-term relationships. The researchers say that interventions developed by the community, for the community, are more likely to be adopted and be effective. It can also help get the intervention into practice in the community. 

Practical challenges had to be overcome for the community to be involved. Venues had to be accessible by public transport, workshops were most often held in the evening or at weekends. There were on-site crèche facilities and food which met diverse dietary requirements. Transport costs were reimbursed, and vouchers for local shops were given. It was also important to take account of cultural and religious festivals.

The research team recommends that partnerships like this are considered by those planning and developing interventions. It may be especially important when working with previously neglected patient groups.

What’s next?

Since completing this study, the researchers have continued to develop their approach to working in partnership with communities. Further studies aimed to improve nutrition in infants and young children: the PANChSHEEEL project in India and the Nurture Early for Optimal Nutrition (NEON) study in a British Bangladeshi community. The ongoing CHAMPIONS project is looking at the impact of COVID-19 on young children living in temporary accommodation.

These studies have continued to put the community at their centre and those often unheard in research have had a voice. Partnerships have resulted in practical toolkits, such as picture cards to encourage communication, and culturally-sensitive recipe books.

During the MIA study, the research team mainly recruited community facilitators through word of mouth. They have since formalised this process. Current and future projects will advertise for facilitators through the community and on social media. Advertisements will describe what the role involves and what is needed from facilitators.

The researchers continue to find new ways of working more effectively with facilitators, who are the face of the community. In future, facilitators may take responsibility for sharing results online, co creating documentaries, and incorporating their own lived experiences. This will boost their ability to direct research and ensure it has an impact.

You may be interested to read

The full paper: Lakhanpaul M and others. A structured collaborative approach to intervention design using a modified intervention mapping approach: a case study using the Management and Interventions for Asthma (MIA) project for South Asian children. BMC Medical Research Methodology 2020;20:271 

Previous research from the MIA project:

Lakhanpaul M, and others. Qualitative study to identify ethnicity-specific perceptions of and barriers to asthma management in South Asian and White British children with asthma. BMJ Open 2019;9:e024545 

Lakhanpaul M, and others. A qualitative study to identify parents’ perceptions of and barriers to asthma management in children from South Asian and White British families. BMC Pulmonary Med 2017;17:126 

 

Funding: This project was funded by the NIHR Health Services and Delivery Research Programme.

Conflicts of Interest: Logan Manikam is Director of Aceso Global Health Consultants Ltd.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study authors

This approach means that at every single stage, you’re working with the community and developing strong partnerships. People had ownership of the project and told us what they really felt. 

Others could follow the principles and the structure we used with other marginalised communities. It takes huge organisation, resources, personnel, and time. But it’s highly effective and could be used on a smaller scale where that’s appropriate.

We were working with four ethnic minority groups and had to take account of holidays and religious festivals, as well as school holidays. We had to find a community centre everyone was happy to attend. Food can help people feel comfortable with each other, but coordinating dietary needs is essential but sometimes complex. 

Language could be a sticking point. If there’s no word for asthma, or no word to describe the diagnosis, how can you communicate with people? A lot of people who speak a language such as Punjabi can’t necessarily read it and we realised quite early that we should be providing verbal and audio information even during the recruitment and consenting process.

Monica Lakhanpaul, Professor of Integrated Community Child Health, Great Ormond Street Institute of Child Health, UCL 

Two out of three of my children suffered from asthma and still do as young adults. As an Asian parent, I found that there was a lot of misleading advice offered from older members of the community. Two common pieces of advice were not to let your child go out in cold weather, and not to let them participate in sports activities. One older community member even mentioned that it would be an issue for my daughter when she reached marriageable age.

These and many more myths and misinformation were identified during our work with parents in the Asian community. I believe the MIA study busted all these myths and misleading information by giving clear guidelines about what asthma means and how best to help your child to progress at school and at home. For all of us parents it was a very uplifting and joyful experience to learn that our children could do everything other kids can do.

Narynder Johal, Parent Representative in the Study, Loughborough

Patient and Public Involvement Advisor 

These findings are helpful not only for healthcare professionals and patients in South Asian populations, but also for educational professionals that teach children from a South Asian background. I can see this method being useful and adaptable for other health concerns in specific cultural groups. 

Building and facilitating ongoing relationships with specific communities is important. More collaborative work, focused on the needs of the patient group, is needed, to ensure that suitable health care is available for all.

Julie Bryant, Voluntary Advisor for Patient and Public Involvement, Nottingham 

Researcher 

As a researcher working for a charity which promotes person-centred care, I am interested in studies that shine a light on inequalities and approaches to research which can help providers better understand the needs of their populations. 

This kind of partnership with a community is being used more widely in population health and health services research. There is growing recognition that it can promote the voices of people who do not typically engage when other research methods are used. This approach isn’t the quickest or cheapest, but it does have real benefits. 

Papers such as this one will support learning and help others avoid some of the pitfalls. Researchers have a real appetite for work like this. The pandemic has shone a light on inequalities; providers and professionals may be looking for ways to address disparities.

Jenny King, Chief Research Officer, Picker Institute Europe