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.

BACKGROUND: To describe how using a combined approach of community-based participatory research and intervention mapping principles could inform the development of a tailored complex intervention to improve management of asthma for South Asian (SA) children; Management and Interventions for Asthma (MIA) study. METHODS: A qualitative study using interviews, focus groups, workshops, and modified intervention mapping procedures to develop an intervention planning framework in an urban community setting in Leicester, UK. The modified form of intervention mapping (IM) included: systematic evidence synthesis; community study; families and healthcare professionals study; and development of potential collaborative intervention strategies. Participants in the community study were 63 SA community members and 12 key informants; in-depth semi-structured interviews involved 30 SA families, 14 White British (WB) families and 37 Healthcare Professionals (HCPs) treating SA children living with asthma; prioritisation workshops involved 145 SA, 6 WB and 37 HCP participants; 30 participants in finalisation workshops. RESULTS: Two key principles were utilised throughout the development of the intervention; community-based participatory research (CBPR) principles and intervention mapping (IM) procedures. The CBPR approach allowed close engagement with stakeholders and generated valuable knowledge to inform intervention development. It accounted for diverse perceptions and experiences with regard to asthma and recognised the priorities of patients and their families/caregivers for service improvement. The 'ACT on Asthma' programme was devised, comprising four arms of an intervention strategy: education and training, clinical support, advice centre and raising awareness, to be co-ordinated by a central team. CONCLUSIONS: The modified IM principles utilised in this study were systematic and informed by theory. The combined IM and participatory approach could be considered when tailoring interventions for other clinical problems within diverse communities. The IM approach to intervention development was however resource intensive. Working in meaningful collaboration with minority communities requires specific resources and a culturally competent methodology.

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

BACKGROUND: 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.

Asthma management in British South Asian children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care.

BACKGROUND: In the UK, people of South Asian origin with asthma experience excess morbidity, with hospitalisation rates three times those of the majority White population and evidence suggests that South Asian children with asthma are more likely to suffer uncontrolled symptoms and hospital admissions with acute asthma compared to White British children. This paper draws on data from The Management and Interventions for Asthma (MIA) study to identify the operation of barriers to optimal care and good asthma control for South Asian children. METHODS: The MIA study followed a multi-phase, iterative, participatory design, underpinned by the socio-ecological model. Findings presented here are from face-to face, semi-structured interviews with South Asian (Indian, Pakistani and Bangladeshi origin) parents and carers of a child with asthma (n = 49). Interviews were conducted in English or relevant South Asian languages using specially trained community facilitators. Data were transcribed verbatim and analysed according to the principles of interpretive thematic analysis, facilitated by the use of NVivo. RESULTS: Seven dimensions of candidacy are identified: identification of candidacy; navigation; the permeability of asthma services; appearances at health services; adjudications; offers and resistance and operating conditions in the local production of candidacy. The analysis demonstrates several ways in which a potential lack of alignment between the priorities and competencies of British South Asian families and the organization of health services combine to create vulnerabilities and difficulties in effectively managing childhood asthma. CONCLUSIONS: Healthcare systems have a responsibility to develop services that are sensitive and appropriate to the needs of their communities. In South Asian communities, further efforts are required to raise awareness of symptoms and effectively communicate how, when and where to seek help for children. There is a need for improved diagnosis and consistent, effectively communicated information, especially regarding medication. Parents made several suggestions for improving services: presentations about asthma at easily accessible community venues; an advice centre or telephone helpline to answer queries; opportunities for sharing experiences with other families; having information provided in South Asian languages; longer GP appointments; extended use of asthma nurses; and better education for healthcare professionals to ensure consistency of care and advice.

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.

Involving families in health research gives children the opportunity to have more control over their healthcare and can help researchers/clinicians to better understand a child's needs. However, involving children in research is still an uncommon practice despite international pressures to include children in decision making. This paper reflects on the development of the Management and Intervention for Asthma study, which worked with communities to develop a framework for planning health interventions for South Asian children with asthma. There are currently 1 million children in the UK being treated for asthma, making it one of the most common chronic childhood illnesses. Symptoms of asthma are overlooked in children from South Asian communities in the UK, leading to worse health outcomes and more visits to the emergency department. We worked with the community to identify the key concerns and priorities they had, and then jointly designed the framework around their needs. We identified several key things to consider when co-developing interventions with children: Power dynamics Consent/Assent Parental involvement Time and location Engagement Diversity of needs Ethnicity and Culture Adapting our research and engagement methods to suit children's needs enabled us to involve them in the study in a way that allowed us to effectively explore their views, priorities, and experiences of their illness. However, researchers need to make sure that they have the expertise, time, and resources to be able to support the needs of child participants.

Qualitative study to identify ethnicity-specific perceptions of and barriers to asthma management in South Asian and White British children with asthma.

OBJECTIVE: This paper draws on the data from the Management and Interventions for Asthma (MIA) study to explore the perceptions and experiences of asthma in British South Asian children using semi-structured interviews. A comparable cohort of White British children was recruited to identify whether any emerging themes were subject to variation between the two groups so that generic and ethnicity-specific themes could be identified for future tailored intervention programmes for South Asian children with asthma. SETTING: South Asian and White British children with asthma took part in semi-structured interviews in Leicester, UK. PARTICIPANTS: Thirty three South Asian and 14 White British children with asthma and aged 5-12 years were interviewed. RESULTS: Both similar and contrasting themes emerged from the semi-structured interviews. Interviews revealed considerable similarities in the experience of asthma between the South Asian and White British children, including the lack of understanding of asthma (often confusing trigger with cause), lack of holistic discussions with healthcare professionals (HCPs), an overall neutral or positive experience of interactions with HCPs, the role of the family in children's self-management and the positive role of school and friends. Issues pertinent to South Asian children related to a higher likelihood of feeling embarrassed and attributing physical activity to being a trigger for asthma symptoms. CONCLUSIONS: The two ethnicity-specific factors revealed by the interviews are significant in children's self-management of asthma and therefore, indicate the need for a tailored intervention in South Asian children.