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

Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child’s needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the ‘evidence base’, making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children’s perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach

The use of a collaborative structured methodology for the development of a multifaceted intervention programme for the management of asthma (the MIA project), tailored to the needs of children and families of South Asian origin: a community-based, participatory study

Background: Asthma is one of the most common chronic childhood illnesses in the UK. South Asian children are more likely to suffer from their asthma and be admitted to hospital. While this inequality needs to be addressed, standard behaviour-change interventions are known to be less successful in minority ethnic groups. Evidence suggests a need to enhance services provided to ethnic minority communities by developing culturally sensitive tailored interventions. Objectives: The Management and Interventions for Asthma (MIA) project aimed to test an iterative multiphase participatory approach to intervention development underpinned by the socioecological model of health, producing an intervention-planning framework and enhancing an evidence-based understanding of asthma management in South Asian and White British children. Design: Interviews and focus groups facilitated by community facilitators (CFs) were used to explore knowledge and perceptions of asthma among South Asian communities, children, families and healthcare professionals (HCPs). A smaller comparison group of White British families was recruited to identify aspects of asthma management that could be addressed either by generic interventions or by a tailored approach. Collaborative workshops were held to develop an intervention planning framework and to prioritise an aspect of asthma management that would be used as an exemplar for the development of the tailored, multifaceted asthma intervention programme. Setting: The community study was based in a largely urban environment in Leicester, UK. Participants: Participants were recruited directly from the South Asian (Indian, Pakistani and Bangladeshi) and White British communities, and through the NHS. Children were aged between 4 and 12 years, with a range of asthma severity. Intervention development: The study had four phases. Phase 1 consisted of an evidence review of barriers and facilitators to asthma management in South Asian children. Phase 2 explored lay understandings of childhood asthma and its management among South Asian community members (n = 63). Phase 3 explored perceptions and experiences of asthma management among South Asian (n = 82) and White British families (n = 31) and HCP perspectives (n = 37). Using a modified intervention mapping approach incorporating psychological theory, phase 4 developed an intervention planning framework addressing the whole asthma pathway leading to the development of an exemplar multifaceted, integrated intervention programme called ‘ACT [Awareness, Context (cultural and organisational) and Training] on Asthma’. Results: Data on the social patterning of perceptions of asthma and a lack of alignment between the organisation of health services, and the priorities and competencies of British South Asian communities and families were produced. Eleven key problem areas along the asthma pathway were identified. A four-arm multifaceted tailored programme, ‘ACT on Asthma’, was developed, focusing on the theme ‘getting a diagnosis’. This theme was chosen following prioritisation by families during the collaborative workshops, demonstrating the participatory, iterative, phased approach used for the intervention design. Conclusions: The MIA study demonstrated barriers to optimal asthma management in children at the family, provider and healthcare system levels and across the whole asthma pathway. Interventions need to address each of these levels to be effective. Minority ethnic communities can be successfully engaged in collaborative intervention development with a community-focused and culturally sensitive methodology. Future work: Further research is required to (1) assess the feasibility and effectiveness of the proposed ‘ACT on Asthma’ programme, (2) develop methods to increase active participation of children in research and service development, (3) develop and test strategies to enhance public understanding of asthma in South Asian communities and (4) identify effective means of engaging the wider family in optimising asthma management. Funding: The National Institute for Health Research Health Services and Delivery Research programme

A qualitative study to identify parents’ perceptions of and barriers to asthma management in children from South Asian and White British families

open access articleBackground Over one million children receive treatment for asthma in the UK. South Asian children experience excess morbidity and higher rates of hospitalization than the White population. This study aimed to explore perceptions and experiences of asthma and asthma management in British South Asian and White British families, to identify barriers to optimal management and to inform culturally appropriate interventions to improve management. Methods A qualitative methodology, using semi-structured interviews was adopted. Members of 30 families from six major South Asian ethnic-religious groups were purposively sampled (n = 49). For comparison, 17 White British parents were interviewed. Topics included understandings of asthma; day-to-day management; interactions with health care providers and the perceived quality of healthcare services. Data were analyzed using interpretive thematic analysis, facilitated by NVivo. Similarities and differences between South Asian and White families were analysed across key themes. Results Many of the problems facing families of a child with asthma were common to South Asian and White British families. Both had limited understanding of asthma causes and triggers and expressed confusion about the use of medications. Both groups reported delays in receiving a clear diagnosis and many experienced what was perceived as uncoordinated care and inconsistent advice from health professionals. No family had received an asthma plan. South Asian families had more difficulty in recognising severity of symptoms and those with limited English faced additional barriers to receiving adequate information and advice about management due to poor communication support systems. South Asian parents reported higher levels of involvement of wider family and higher levels of stigma. Attendance at the emergency department was related to previous experience, difficulties in accessing primary care, lack of knowledge of alternatives and difficulties in assessing severity. Conclusions Barriers to optimal asthma management exist at the individual family, community and healthcare systems levels. Culturally sensitive, holistic and collaboratively designed interventions are needed. Improved communication support for families with lower proficiency in English is required. Healthcare professionals need to ensure that families receive an asthma plan and make greater efforts to check families’ understandings of asthma triggers, use of medications, assessment of asthma severity and accessing help