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 mi...

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Main Authors: Monica Lakhanpaul, Deborah Bird, Lorraine Culley, Nicky Hudson, Noelle Robertson, Narynder Johal, Melanie McFeeters, Charlotte Hamlyn-Williams, Mark Johnson
Format: Article
Language:English
Published: National Institute for Health Research 2014-09-01
Series:Health Services and Delivery Research
Subjects:
Online Access:https://doi.org/10.3310/hsdr02280
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author Monica Lakhanpaul
Deborah Bird
Lorraine Culley
Nicky Hudson
Noelle Robertson
Narynder Johal
Melanie McFeeters
Charlotte Hamlyn-Williams
Mark Johnson
author_facet Monica Lakhanpaul
Deborah Bird
Lorraine Culley
Nicky Hudson
Noelle Robertson
Narynder Johal
Melanie McFeeters
Charlotte Hamlyn-Williams
Mark Johnson
author_sort Monica Lakhanpaul
collection DOAJ
description 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.
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spelling doaj.art-59a59236d2d3444db86779e64c0529e72022-12-22T01:09:34ZengNational Institute for Health ResearchHealth Services and Delivery Research2050-43492050-43572014-09-0122810.3310/hsdr0228009/2001/19The 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 studyMonica Lakhanpaul0Deborah Bird1Lorraine Culley2Nicky Hudson3Noelle Robertson4Narynder Johal5Melanie McFeeters6Charlotte Hamlyn-Williams7Mark Johnson8General and Adolescent Paediatrics Unit, Institute of Child Health, University College London, London, UKDepartment of Medical and Social Care Education, University of Leicester, Leicester, UKSchool of Applied Social Sciences, Health and Life Sciences, De Montfort University, Leicester, UKSchool of Applied Social Sciences, Health and Life Sciences, De Montfort University, Leicester, UKSchool of Psychology, University of Leicester, Leicester, UKParent RepresentativeUniversity Hospitals of Leicester NHS Trust, School of Nursing and Midwifery, De Montfort University, Leicester, UKGeneral and Adolescent Paediatrics Unit, Institute of Child Health, University College London, London, UKMary Seacole Research Centre, De Montfort University, Leicester, UKBackground: 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.https://doi.org/10.3310/hsdr02280asthma managementcollaborative structured methodologysouth asian familiesmia projectmultifacited intervention
spellingShingle Monica Lakhanpaul
Deborah Bird
Lorraine Culley
Nicky Hudson
Noelle Robertson
Narynder Johal
Melanie McFeeters
Charlotte Hamlyn-Williams
Mark Johnson
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
Health Services and Delivery Research
asthma management
collaborative structured methodology
south asian families
mia project
multifacited intervention
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic asthma management
collaborative structured methodology
south asian families
mia project
multifacited intervention
url https://doi.org/10.3310/hsdr02280
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