Evidence mapPaperPMID 35227322Full record

ArticleResearch involvement and engagement2022

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.

Laura S Nixon, Nicky Hudson, Lorraine Culley, Maya Lakhanpaul, Noelle Robertson, Mark R D Johnson, Melanie McFeeters, Narynder Johal, Charlotte Hamlyn-Williams, Yebeen Ysabelle Boo and 1 more

Abstract readLetter
In one paragraph

Article in Research involvement and engagement, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Laura S NixonPopulation, Policy and Practice, UCL Great Ormond Street Institute of Child Health, London, UK.ORCID https://orcid.org/0000-0001-6677-1420
Nicky HudsonSchool of Applied Social Sciences, De Montfort University, Leicester, UK.ORCID https://orcid.org/0000-0003-4091-1493
Lorraine CulleySchool of Applied Social Sciences, De Montfort University, Leicester, UK.
Maya LakhanpaulFaculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.
Noelle RobertsonDepartment of Neuroscience Psychology and Behaviour, University of Leicester, Leicester, UK.ORCID https://orcid.org/0000-0003-1178-9230
Mark R D JohnsonMary Seacole Research Centre, De Montfort University, Leicester, UK.
Melanie McFeetersNHS England, Direct Commissioning, Midlands Region, Leicestershire, UK.
Narynder JohalParent Representative, Leicester, UK.
Charlotte Hamlyn-WilliamsAquarius Population Health, London, UK.ORCID https://orcid.org/0000-0001-6828-3826
Yebeen Ysabelle BooPopulation, Policy and Practice, UCL Great Ormond Street Institute of Child Health, London, UK.
Monica LakhanpaulPopulation, Policy and Practice, UCL Great Ormond Street Institute of Child Health, London, UK. m.lakhanpaul@ucl.ac.uk.ORCID http://orcid.org/0000-0002-9855-2043

Funding

National Institute for Health Research 09/2001/19
6 · The paper itself

Abstract

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.

Indexed as

AsthmaCBPRChild HealthCommunity healthDiversityEthnic GroupsIntervention designPaediatricsPPIResearch Methods

Identifiers

PMID35227322
PMCPMC8883750

What Socratic holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.