Involvement of service users in decision making, in both clinical and research settings, has become a central feature of many health and research funding policies in the last 15 years. Over the same timeframe, there has been an increasing focus on children's rights, promoted by the UN Convention of the Rights of the Child, which gives children a right to be involved in decisions that affect their lives. In a research setting, this has resulted in increased engagement of children in research, as opposed to relying on parents or carers to represent their children, and a shift from research on children to research with children. In this article, we discuss collaboration with children under the age of 16 years in health research: what this means and why (or why not) to do it. The definition of collaboration is discussed and the lines among collaboration, involvement, participation and participatory research considered. The risks and benefits of collaboration are reviewed, both theoretical and evidence based, where evidence exists. The review ends with a look towards the future including the need for agreed definitions, better reporting of collaboration and other patient and public involvement activities with children to build up the much needed evidence base, the need for cost-benefit evaluations and, most importantly, the need for careful consideration as to whether collaborating with children is appropriate in each circumstance.

BackgroundOver 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.MethodsA 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.ResultsMany 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.ConclusionsBarriers 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.

BackgroundAsthma 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.ObjectivesThe 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.DesignInterviews 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.SettingThe community study was based in a largely urban environment in Leicester, UK.ParticipantsParticipants 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 developmentThe 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’.ResultsData 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.ConclusionsThe 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 workFurther 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.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

BackgroundSouth Asian children with asthma are less likely to receive prescriptions and more likely to suffer uncontrolled symptoms and acute asthma admissions compared with White British children. Understanding barriers are therefore vital in addressing health inequalities. We undertook a systematic review identifying explanatory factors for barriers and facilitators to asthma management in South Asian children. South Asians were defined as individuals of Indian, Pakistani or Bangladeshi descent.MethodsData Sources - Medline, HMIC, EMBASE, ASSIA, Web of Science, BNI, CINAHL, PsycINFO, OpenSIGLE, CRD, Scopus, NHS Evidence, Cochrane Library, Campbell Collaboration, RCPCH, ATS, ERS, Asthma UK, Google Scholar & Asthma Guidelines (BTS, GINA, ATS, Monash, NAEPP, Singapore & New Zealand) to August 2013.Inclusion Criteria – Qualitative, quantitative or mixed methods research with primary focus on identifying explanations for barriers and/or facilitators to asthma management in South Asian children aged 0–18 years with diagnosed/suspected asthma and/or carers and/or healthcare professionals.Data Extraction – Three authors independently reviewed, selected & extracted eligible articles with disagreements resolved by research team discussion.Results15 studies encompassing 25,755 children, 18,483 parents/carers and 239 healthcare professionals were included. Barriers and explanatory factors identified were:1. Lack of asthma knowledge in families and healthcare professionals.2. Under-use of preventer medications.3. Non-acceptance/denial of asthma.4. Over-reliance on Emergency Department management.5. Communication problems.6. Non-adherence to medication.7. Use of complementary therapies.Little facilitators regarding asthma management were identified.ConclusionsSeveral key issues were identified as likely to be ethnic-specific to South Asian families, rather than a reflection of minority status: impact of parental and professional knowledge and beliefs, health service utilisation pattern explanations and the impact of prejudice and stigmatisation. Other explanations such as language barriers are not strictly ethnic specific but instead reflect a minority position.Further research is required to identify why barriers exist, the mechanisms by which they impact on asthma management and how they can be overcome. Furthermore, understanding the difference between barriers and explanations that are ethnic-specific and those that are related to being a minority will enable the application of generic system-wide interventions where ethnicity is not the issue and ethnically-tailored interventions where needed.