Deborah Bird

Why collaborate with children in health research: an analysis of the risks and benefits of collaboration with children

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 childrens 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.

A systematic review of explanatory factors of barriers and facilitators to improving asthma management in South Asian children

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.

PO-0984 Asthma: A Diagnostic Dilemma

Asthma is one of the most common chronic conditions with 1.1 million children experiencing asthma in their childhood. Much of the related morbidity is due to poor management, particularly the under use of preventative medicine. This was a collaborative participatory study aimed at identifying where along the asthma pathway resources needed to be focused to improve asthma management. Interviews and focus groups were used to explore barriers to optimal asthma management with communities, children, families and healthcare professionals (HCPs). Key themes were drawn from the data, prioritised and translated into an intervention. Diagnosis was identified as the key priority and one that all parents/carers felt needed to be addressed first, although it was considered a low priority to HCP. For parents there was confusion surrounding the diagnostic process, and the label of asthma itself. The diagnostic process also raised concerns, with some HCPs being reluctant to diagnose or suggesting that some children may be ‘too young to diagnose’. Parents and carers reported problems with delays in treatment following a diagnosis, and inconsistent information being provided at the point of diagnosis. To improve the diagnostic process, a multifaceted, integrated intervention programme was developed. This study highlighted that ‘getting a diagnosis’ was a priority. The disparity in priorities between HCPs and families around ‘getting a diagnosis’ emphasises the importance of working collaboratively with families as well as HCPs to ensure that key priorities, for service users and providers, are understood and addressed appropriately. Funded by the NIHR HS and DR Programme (09/2001/19).

Compliance with NICE guidelines for urinary tract infections: a survey among the paediatric trainees of the London Deanery

Urinary tract infection (UTI) is a common bacterial infection affecting 8% of girls and 2% of boys in childhood.1 The revised National Institute of Health and Clinical Excellence (NICE) guidelines for management of UTI in children were introduced in August 2007.2 Since junior doctors are the first point of contact for most patients,3 it is important for them to be aware of these national guidelines. We performed an online survey to assess the awareness and compliance of these guidelines among the paediatric trainees in the London Deanery. A structured questionnaire was designed using online software and was sent …

G450 An integrated approach using qualitative methods to identify perceptions of asthma in british south asian and white british children

Background and aims Childhood asthma places a significant physical, financial, and psychological burden on patients, families, communities and the healthcare system. Current research indicates certain minority ethnic groups, especially South Asian children, encounter inequalities in asthma management and outcomes. Furthermore, children’s views and aspirations are infrequently evaluated. We report here the process of encouraging children’s participation in a multiphase participatory the Management in Asthma (MiA) study. The aim of this study was to explore the perceptions and experiences of asthma and its management in British South Asian (BSA) and White British (WB) children, using adapted qualitative methods. Methods Two qualitative methods were used: semi-structured interview and prioritisation workshop, adapted to encourage children’s participation (table 1). 14 themes for optimising asthma management identified from the semi-structured interviews and were used in the ranking exercises. Children ranked these themes by linear (LI, non-equal ranking), diamond (DA, equal ranking permitted) and budget pie (BP, ranking by funds allocation). Abstract G450 Table 1 Qualitative methods Adaptations Semi-structured interview Drawings and text to prompt questionsExtended time for creative activities e.g. drawings Health Prioritisation workshop Trained ‘peer’ researchers (14–16 year-old) as facilitatorsToy money and board games Results Semi-structured interviews with children, with or without parents/guardian present (33 BSA and 14 WB children with asthma aged 5–12-years-old) revealed considerable similarities in experiences of asthma, notably inadequate holistic approach to asthma management amongst healthcare professionals and the role of schools and peers in children’s asthma perception and management. Barriers to health information provision existed in both groups. Consistently, WB children’s perception of asthma aetiology was different from BSA children. In all the ranking methods, children (21 BSA and 1 WB child aged 5––12-years-old) highly prioritised acute attacks according to their perceived health importance. ‘Strength of opinion’ was demonstrated in BP, as acute attack received £1430 in total, whilst the 2nd place theme only received £610. Conclusion Future intervention in children with asthma may wish to focus on managing acute attacks by a holistic approach, by involving schools, families and healthcare professionals. Furthermore, ethnospecific divergent beliefs about asthma aetiology can be tackled by a targeted educational programme.

Development of tailored and integrated health-care interventions to reduce inequalities in health outcomes: the Management and Interventions for Asthma (MIA) project

Abstract Background South Asian children are more likely than others to suffer from their asthma and be admitted to hospital. The UK Public Health Outcomes Framework focuses on partnership across locally led systems to plan and deliver health-care services in the context of broader social determinants of health. The Management and Interventions for Asthma (MIA) project aimed to embody localism by using a collaborative, participatory model to develop an intervention designed to improve asthma management in South Asian children. Methods The project was multi-phase, iterative, and participatory, underpinned by the socio-ecological model of health, recognising the importance of issues arising from the individual, family, wider community, and organisational and environmental contexts of family health. Building on this model, the project worked collaboratively with linguistically and culturally competent community facilitators (CFs), to engage and develop a partnership between South Asian community members, parents and children living with asthma, health-care professionals (HCPs), and researchers. 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 asthma in South Asian children using focus groups (n=67) with members of South Asian communities (Indian, Pakistani, Bangladeshi) recruited by trained CFs. Phase 3 explored experiences of asthma management via semi-structured interviews with South Asian and White British parents and children (n=82 participants) recruited from the NHS and by CFs and included semi-structured interviews with HCPs (n=37). Focus groups and interviews were done in the preferred language of the participants. Focus group facilitators and interviewers were trained and supervised to reduce bias. Data were analysed with principles of interpretive thematic analysis facilitated by NVivo. Interviews with a comparison sample of White British parents and children (n=31) identified aspects of asthma management that could be addressed by generic interventions and those needing a tailored approach. Data from phases 1–3 were combined with thematic analysis to identify 11 key themes that needed to be addressed to optimise asthma management. In phase 4, an intervention planning framework was developed, with a novel modified intervention mapping approach incorporating psychological theory. Collaborative workshops, including parents, children, academics, and HCPs, were held to integrate data, develop an asthma intervention planning framework, and prioritise one aspect of asthma management to be used as an exemplar for the tailored intervention programme. Findings The 11 key themes were: being able to talk to doctors and nurses, being able to use services, community awareness of asthma, getting a diagnosis, having suitable information on asthma, medicines for asthma, school and my childs asthma, services available for asthma, quality of care, understanding asthma, and what to do day to day. Parents chose getting a diagnosis as a priority and a multifaceted programme, ACT (awareness, context, training) on asthma, was developed as an exemplar intervention, consisting of community awareness, education and training, clinical support, and a central advice centre, coordinated by a central team. Recruitment targets were exceeded and participants gave positive feedback. Interpretation Key issues in optimum asthma management in children arise at the patient, provider, and health-care system levels and interventions must address all these levels. Minority ethnic communities can be successfully engaged in collaborative intervention development with a community focused and culturally sensitive methodology. Funding NIHR Health Services and Delivery Research (HS&DR) Programme (09/2001/19). Views and opinions expressed those of the authors and do not necessarily reflect those of the HS&DR Programme, the NIHR, the NHS, or the Department of Health.

G120 Knowledge and Attitudes; Essential Ingredients For Developing Co Produced Tailored Interventions For Asthma Management (MIA) in South Asian and White British Children

Childhood asthma is a chronic illness affecting quality of life and leading to higher mortality in the UK than other countries. In the UK, prescription rates for relievers and preventers are lower for South Asian (SA) children. SA children are more likely to suffer uncontrolled symptoms and to be admitted to hospital with acute exacerbations compared to White British (WB) children. The MIA study aimed to co-produce a tailored intervention framework for childhood asthma management by exploring the knowledge and attitudes towards asthma amongst WB and SA parents, carers and children. Methods Semi-structured interviews with a purposive sample of 44 children aged 5–12yrs (33 SA, 14 WB) and 65 parents/carers (49 SA, 16 WB) were used to explore barriers and facilitators to asthma management. A comparative thematic analysis was conducted. Results WB families were more likely to have pre-existing knowledge of asthma than SA families; previous knowledge of asthma strongly influenced how families managed childhood asthma in both communities. In a minority of SA families, ‘fear of the unknown’ prevented families from investigating asthma further. Beliefs regarding the causes and nature of asthma were similar in both groups, however whilst 33% of SA families attributed asthma to either God’s will or Karma, no WB families did so. All communities reported that advice was often given by extended family members but this was more prominent in SA families, especially in relation to complementary asthma management strategies. SA and WB families both reported a lack of information-giving by health care professionals in relation to asthma. Conclusions Pre-existing knowledge and attitudes surrounding asthma differ between SA and WB parents and directly impact on management. Intervention Co-production is increasing in use and popularity. The MIA project supports the co-production model by highlighting the importance of identifying attitudes and beliefs towards asthma from different ethnic groups so that interventions can be tailored to address their fears and concerns more effectively. Disclaimer This project was funded by the National Institute for Health Research HS&DR programme (ref 09/2001/19). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR programme, NIHR, NHS or the Department of Health.

382 Improving Asthma Management for South Asian Children; Whose Priorities Matter?

Background South Asian Children present more frequently than White British Children to emergency departments with acute asthma: tailored interventions may redress this. The Management Interventions for Asthma project (MIA) assessed the feasibility of involving adults, parents and children from this potentially ‘hard to reach’ ethnic community alongside healthcare professionals (HCPs) in prioritising components for tailored asthma interventions. Methods Eleven issues identified as barriers to asthma management following interviews with community members, parents, children and HCPs were presented at community based events by the MIA team utilising interpreters/facilitators for simultaneous 5-way translation. HCPs were sent information electronically. Forty six community members, 22 parents, 19 children and 13 HCPs used Borda ranking to prioritise the issues for subsequent development of interventions in the current health care system. Results Getting a diagnosis was ranked first by parents and community members but last by HCPs. Language barriers were ranked first by HCPs. Children prioritised managing acute asthma attacks. Conclusions Ethnicity and language need not be barriers to involving South Asian families in health services research. It is crucial to include community members, families and children in the development of tailored interventions as well as HCPs. Relying on HCPs alone could lead to key issues being missed or priorities misjudged. Acknowledgement This project was funded by the NIHR Health Services and Delivery Research programme (ref 09/2001/19). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR programme, NIHR, NHS or the Department of Health.

1697 Playing the Game: Working with Young Children to Develop Asthma Interventions

Background Involving children in designing healthcare interventions is encouraged but challenging and often limited to teenagers. We conducted a feasibility study assessing three methods for prioritising asthma intervention components with children aged 6–12 yrs. Methods Nineteen children prioritised 14 aspects of asthma management for intervention development using Diamond ranking (DR - equal ranks permitted), Standard Borda Ranking (SBR - no equal ranks permitted) and Budget Pie (BP - allocation of funds according to priority). Child-friendly tools included discussions, postcards, toy money and board games. Results DR and SBR were completed by all participants using the DR rankings as a baseline then separating equal ranked items to generate SBR rankings. Older children preferred BP as it allowed them to make choices according to need for improvement and therefore requirement for funds, rather than simply importance, but was only used successfully by those aged 8+. BP can also demonstrate weighting. Managing Acute Attacks was prioritised 1st with all methods but only BP demonstrated strength of opinion: Managing Acute Attacks received £1430 in total, whilst the 2nd place issue received just £610. Conclusions Young children can and should be in involved with health services research. More effort needs to be dedicated to developing methods that enable Childrens involvement. Acknowledgement This project was funded by the NIHR Health Services and Delivery Research programme (project number 09/2001/19). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR programme, NIHR, NHS or the Department of Health.

Asthma guidelines: are they implemented on discharge?

Asthma affects approximately 1 in 10 children in the UK.1 The British Thoracic Soceity/Scottish Intercollegiate Guidelines Network algorithms2 are widely used; however, personal experience suggested that their recommendations for patient education were not being used. We undertook a postal questionnaire to determine whether the guidelines were being implemented as recommended. The questionnaire was sent to 150 randomly selected NHS hospitals in England, Scotland and Wales. Of 54 replies, six were excluded because the hospitals did not have in-patient paediatric facilities, …