This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
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.
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.
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.
- 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.
- 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, Hindi, or Gujarati. 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.
- 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.
- 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.
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
Commentary from the researchers on working in partnership with South Asian children in the UK: Nixon LS, and others. Key considerations when involving children in health intervention design: reflections on working in partnership with South Asian children in the UK on a tailored Management and Intervention for Asthma (MIA) study. Research Involvement and Engagement 2022;8:9
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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.