The use of a collaborative structured methodology for the development of a multifaceted intervention programme for the management of asthma (MIA), tailored to the needs of children and families of South Asian origin.

The Management and Interventions for Asthma project

There is unacceptable variation across the country in the quality of care for children, e.g. in the treatment of long-term conditions such as asthma and diabetes. We want the NHS to do even more to improve care for children and young people. 1

While the burden of chronic illness (e.g. asthma and diabetes) continues to increase, the NHS is undergoing financial constraints. In children, it is noted that the outcomes for those with chronic disease are one of the worst in Europe, with death rates for illnesses that rely heavily on primary care services such as asthma being higher in the UK than in other countries. 2,3 The report also indicates that 75% of hospital admissions for children with asthma could have been prevented with better primary care. 2 Asthma is one of the most common chronic conditions in childhood, with inequalities existing in some ethnic minority groups. Children in South Asian communities, a group traditionally considered to be ‘hard to reach’, are known to suffer from under-recognition of symptoms/disease severity and increased attendance to the emergency department. The British Thoracic Society (BTS) guideline4 recommends that HCPs have a heightened awareness of the complex needs of minority ethnic groups among other named vulnerable groups. This is due to the recognition that care in minority ethnic groups is suboptimal and that there is a variation in the health care that they receive.

The Government White Paper5 recognises the importance of contextual factors and their contribution to maintaining good health, not only to the importance of employment and socioeconomic status (SES) but also to the environment and family relationships. An individual’s culture, beliefs and attitudes and those of their community also have an influence on behaviour towards their own health and their interaction with the health system. The Children’s Outcome forum report2 and Healthy Lives, Healthy People5 have not only recommended stronger partnerships between individuals, health, local authority and the voluntary sector to develop an integrated approach to health to tackle some of these issues, but have also delivered a strong recommendation to ensure that the voices of children, young people and their families are heard so that they can contribute to the improvements in services they will be accessing. Consequently, NHS HCPs, commissioners and policy makers are working more collaboratively with their communities so that services can be tailored to their needs. Tailoring, although recommended by a Cochrane review of 26 studies6 as an approach to intervention development, is, however, supported by little evidence on how the actual transition from evidence and theory to the design of the practical interventions should be made. Michie7 recommended that intervention developments use available evidence to inform and support the intervention. Michie7 noted that suggestions for intervention design tended to be evidence inspired rather than evidence based and that there is a need for studies of techniques, methods of delivery and implementation and use in a variety of target populations to identify the techniques and combinations that are needed to result in effective interventions. The Cochrane Collaboration ‘Equity’ group8,9 also noted that the evidence base for interventions to address inequalities is fundamentally flawed and recommended further research to inform intervention development.

The MIA project, therefore, chose asthma as an exemplar to demonstrate the processes aimed to enable collaboration between South Asian children, families, communities and HCPs to produce a multifaceted health intervention framework for asthma management tailored to the needs of South Asian children of primary school age, using a participatory, theory-based approach with an aim that the process could be transferrable to other chronic conditions and communities.

This introductory chapter explains, in more detail, why the MIA study focused on South Asian children with asthma and why the project adopted a participatory approach towards the development of the intervention framework.

Asthma and children

Childhood asthma is one of the most common chronic conditions of childhood. In the UK, current prevalence estimates suggest that 1.1 million children, or 1 in 11 children, will experience asthma at some point in their childhood. 11 Every year, 44,000 children are admitted to hospital, with between 40 and 50 children dying as a result of asthma. 11 In children under the age of 5 years, it is very difficult to differentiate, with any degree of certainty, wheezing attacks due to asthma from viral infections. Measurements of respiratory function is also known to be difficult, with very young children responding differently to many of the available drugs. 13 As a consequence, asthma places a substantial burden of care on families, communities and the health services. 11

Evidence suggests that UK children’s health services provide inferior care compared with equivalent European countries. 14 Wolfe et al. 14 acknowledged that, while there are pockets of good practice, there are also poor outcomes with services planned around the needs of organisations and providers rather than the children, young people and families. This ultimately means that services fail to recognise children and young people’s specific requirements, or acknowledge important recommendations for children’s health care. 15 Key recommendations from the Marmot Review16 indicate that investments in children’s services should be carefully planned and fit for purpose in order to improve care and reduce inequality while improving overall efficiency. The challenge for researchers, clinicians and policy makers is to understand what and why variations in care exist and to explore how these variations could be addressed.

Asthma management and control in children

Asthma management encompasses the whole pathway from awareness of asthma itself, recognition of symptoms, diagnostic, pharmacological, educational, clinical and preventative elements which reflect the diverse impact of asthma on a child’s life. This therefore includes both modifiable and non-modifiable factors, such as parental knowledge and compliance with medication (modifiable) and genetic variations in asthma phenotypes (non-modifiable). The asthma management pathway for the purposes of the MIA study has been defined by the research team as ‘stages of ideal care required to recognise, diagnose, treat and optimally manage asthma’.

In order to intervene in any condition, the issues present in its management must first be understood. The National Service Framework (NSF) for Children Asthma Exemplar17 highlights the many aspects of management along a patient journey from the onset of symptoms through to achieving asthma control and, while the mortality associated with asthma may be limited to acute asthma attacks, the morbidity associated with asthma is widespread. As a result, over the last 15 years HCPs have moved from a focus on treating acute asthma attacks to achieving overall asthma control. The US National Asthma Education and Prevention Programme (NAEPP) guideline defines control as ‘the degree to which the manifestations of asthma (symptoms, functional impairments, and risks of untoward events) are minimised and the goals of therapy are met’ (p. 36). 18 In contrast, the Global Initiative for Asthma (GINA), acknowledges that control can be defined in different ways and suggests that assessment of asthma control should include ‘control of the clinical manifestations (symptoms, night waking, reliever use, activity limitation, lung function), but also control of the expected future risk to the patient such as exacerbations, accelerated decline in lung function and side effects of treatment’ (p. 23). 19 The British Guidelines on the Management of Asthma state that the aim of asthma management is control. Complete control of asthma is defined as ‘no day time symptoms, no night-time awakening due to asthma, no need for rescue medication, no exacerbations, no limitations on activity including exercise, normal lung function and minimal side effects from medication’ (p. 37). 4 It also means that a child’s asthma will not interfere with his or her daily life including exercise and going to school, in addition to having normal breathing tests, for example peak flow and spirometry. 4 Having good asthma control therefore reduces the risk of children having asthma attacks. 4

Asthma and South Asian children

In the UK, people of South Asian origin with asthma experience excess morbidity, with hospitalisation rates three times those of the majority White population. 30 There is evidence to suggest a disproportionate impact of asthma on minority ethnic children, with calls to urgently redress this imbalance. 31,32 A 13-trial meta-analysis30 reported lower prevalence of wheeze and asthma in South Asian children than in White British children, but the same prevalence of exercise-induced bronchospasm on objective testing. These findings suggested an underdiagnosis of asthma in South Asian children. The meta-analysis additionally reported that, once diagnosed with asthma, South Asian children were less likely to receive prescriptions for reliever and preventer medications than their White British counterparts.

Additionally, further UK data indicate that South Asian children with asthma are more likely to suffer uncontrolled symptoms and be admitted to hospital with acute asthma than White British children, with no evidence to suggest that South Asian children have more severe asthma. 30,31,33 There are numerous risk factors associated with asthma, some of which have been specifically highlighted in relation to South Asian children. Several reports identify being UK born (compared with being of the same ethnic origin but non-UK born) as a risk factor for developing asthma. 34,35 Gilthorpe et al. 36 and Rona et al. 37 both indicated that sex may be relevant. Furthermore, Gilthorpe et al. 36 reported that Pakistani and Indian boys tended to use emergency department (ED) services more than other groups or sexes, with Rona et al. 37 identifying that the male sex is a risk factor for developing asthma.

Socioeconomic status is an important determinant of asthma control for both South Asian and majority populations,31,36 as low SES is associated with poor access to primary health care and higher hospitalisation. However, even with adjustment for SES, there is still a correlation between South Asian ethnicity and poorer health outcomes for asthma. 36,38 Potential explanations include ethnicity-specific health beliefs and explanatory models of asthma,39–43 which in turn influence concordance and adherence to management plans. 44 In Leicester, the hospital admission rate for South Asian children is 4.6 times higher than for White British children. 33 Given the high number of families of Asian descent living in the UK, with the three largest groups being of South Asian origin (Indian, Pakistani and Bangladeshi),45 the inequalities experienced by South Asian children are of significant concern.

Barriers and facilitators to asthma management in South Asian children

An Asthma UK-funded review on the barriers and facilitators to asthma management in South Asian children was carried out by members of the MIA research team (see Appendix 1). 46 The review identified barriers including knowledge gaps and erroneous beliefs regarding the nature of asthma, underuse of preventer medications (due to underprescription and fears of overuse), non-acceptance and denial of asthma, reliance on EDs in preference to primary care, difficulties in perception of symptom severity, language barriers and use of complementary therapies.

The review highlighted the importance of not only establishing what a barrier might be, but also exploring why that barrier exists. For each barrier identified, there were various documented and theorised explanations; however, the majority of studies did not identify clear associations between a barrier, its explanations and management behaviour. Several key issues were identified as likely to be ethnic-specific in relation to South Asian families: the impact of parental and professional knowledge and beliefs; access to health services and preventer medication utilisation patterns; dietary modifications; and the presence and impact of prejudice and stigmatisation.

Given the large number of potential barriers and explanations that may impact upon asthma management, it is understandable that clinicians may be daunted by the prospect of attempting to address these barriers in everyday practice. Nonetheless, these findings highlight the importance of cultural and community beliefs. For example, there is minimal evidence to support the theory that dietary restrictions are an appropriate method for asthma management. As a consequence, they are often not considered a key factor in asthma management according to the BTS guidelines, used by the majority of British practitioners. 47 However, it was identified that beliefs and practices concerning food and asthma are prevalent among minority families in the UK. Thus, there is a need for clear and clinically applicable interventions that have considered the various barriers and explanatory factors, including the impact of cultural and community beliefs. While identifying ethnicity-specific barriers is important in developing ethnically tailored intervention programmes, academics and clinicians must guard against assuming too great a role for ethnicity. In exploring cultural difference, it is important not to ignore the commonalities in experience between ethnic groups. 48 The focus of research, therefore, needs to shift towards clearly linking ethnic-specific beliefs, barriers and management practices to development of interventions and improving clinical outcomes. A shift also needs to be made from a focus on deficit models of culture in minority ethnic groups as an explanation for health inequalities towards an approach which recognises the responsibility of healthcare systems to develop services which are sensitive and appropriate to the needs of their communities.

Intervention design

A 2004 literature review regarding the design of interventions to change health behaviours7 concluded that many intervention evaluations were inconclusive due to research design limitations and, as a consequence, represented a waste of resources, time and effort. It has been suggested that health interventions are often developed without sufficient consideration given to their evidential or theoretical base, their fundamental design or appropriateness to the target population. 59

Tailored interventions

One important issue in intervention design thus concerns the need to tailor interventions to specific populations. The Medical Research Council (MRC)60 guidance on the design of complex interventions suggests that, rather than assume that standardised interventions designed for generic groups are applicable to all groups, interventions should be tailored to the needs of ethnic minority groups as these are more likely to succeed than generic approaches. The MRC argue that complex interventions may work best if tailored to local circumstances such as ethnicity or SES, rather than being completely standardised. 60 Three systematic reviews have addressed the question of whether or not culturally sensitive education programmes are more effective than generic ones;61–64 all three concluded that, while the reviews were limited by the small number of available trials for inclusion, culturally sensitive programmes were more effective with further study warranted.

A Cochrane review of interventions for improving asthma management in children demonstrated that interventions specifically tailored to address the needs of ethnic minority groups were more successful than those focusing on the generic population. 61 A further Cochrane review explored whether or not culture-specific asthma programmes, in comparison with generic asthma education programmes or care, improved asthma-related outcomes in children and adults with asthma who belonged to minority groups. 65 Interventions included individual asthma educational sessions focusing on relational and collaborative asthma management among children, parents, families, physicians and mental health specialists; and others on the optimisation of treatment and improving knowledge about disease severity and medication. The report noted that the use of culturally specific asthma education programmes for children from minority groups was effective at improving overall asthma-knowledge scores for children. However, it failed to note significant improvements in the number of participants with asthma exacerbations or its frequency, including ED visits. While the report noted a benefit of tailoring interventions to be culture-specific with regard to asthma knowledge in children, the evidence base was lacking and, as a result, these findings could not be confirmed.

Adaptation and tailoring

There remains some controversy over the relative merits of ‘adaptation’ and ‘tailoring’ and the difference between these. Based on a systematic review of the literature, a recent Health Technology Assessment review66 discussed this at great length in relation to minority ethnic groups. It noted that some intervention studies reported were based on generic interventions already operating for mainstream populations, which had been altered to meet the characteristics of the ethnic population that it was (intended to be) serving, as opposed to those that were designed from first principle for ethnic minority populations (e.g. using a community participatory-based approach). In strict terms, adaptation would refer to the former type of interventions; however, on reviewing the literature, there were no interventions demonstrated that were not in some way based on a generic intervention or principle (e.g. a smoking cessation intervention may be designed through a community participatory-based approach to target an ethnic minority population but still remained based on nicotine replacement therapy or counselling). We have, therefore, used this previous evidence to ensure that the intervention would incorporate both ‘tailoring’, based on community beliefs and preferences, and ‘adaptation’ of general principles. 67

There also remains some concern over the appropriateness of targeting investment in interventions on specific minority or high-risk groups, rather than focusing on a more ‘equitable’ distribution of resources through tailoring generic services. It appears that, while there is little strong evidence, there is a consensus suggesting that interventions that specifically target high-risk groups and seek, thereby, to reduce inequalities are relatively cost-effective, and may be more clinically effective than seeking to ensure that broader interventions also ensure inclusion of those most at risk. The arguments for reducing health inequality by targeted action, therefore, serve more than a political or a moral agenda: they can be justified on the basis that this type of action reduces the costs overall for society, and produces a higher return on investment in terms of improved health, than otherwise. 68–70 Targeted action without tailoring the intervention for the group being targeted, however, is unlikely to have any benefits.

Intervention design approaches

Creating a Patient-led NHS74 highlighted the ambition of the government to create a NHS that moves away from doing things ‘to’ and ‘for’ patients, towards a NHS that works ‘with’ patients. However, there is little consensus on how this should be operationalised. Neither traditional deficit models of service development (where health professionals identify a deficit in service provision and develop/identify services to fill them) nor newer patient-led models of service development (where patients identify their needs and either they or service providers provide/adapt services for them) entirely address the needs of the NHS. 75 An exclusive focus on either the healthcare provider or the patient is, therefore, unlikely to be effective in the long term. It is argued by Bovaid76 that partnerships developed between health professionals/systems, patients, and the public will be the key to success in creating a new, more effective NHS. 76 Several approaches to intervention design are suggested. Evidence suggests that multifaceted interventions are more effective in improving clinical outcomes than those which take a single approach. 50,51,77,78 Research suggests that the more strategies are combined in one intervention, the more likely an improvement in clinical outcome will be found. 79 Equally, it remains true that the more complex an intervention, the harder it is to evaluate and to identify which elements are the most critical. 80

Participatory research

Working with individuals and communities to define problems and develop solutions is one of the fundamental principles of participatory research (PR). PR does not replace other forms of research, but instead defines how the research process is carried out. Green et al. 81 defined PR as systematic inquiry, with the collaboration of those affected by the issue being studied for purposes of education and taking action or effecting social change (p. 1927). PR is a way of addressing health issues in their social context, rather than in the traditional medical model where health issues are addressed in their clinical context. 82 PR is based upon effective information exchange and shared decision-making to respond to service users’ needs. 83

Community-based participatory research

Community-based participatory research (CBPR) is a collaborative approach to research. CBPR involves all partners in the research process equally and recognises the unique strengths that each brings. CBPR begins with identifying a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities. 84 CBPR is, therefore, a collaborative research approach designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organisations, and researchers in all aspects of the research process; the aim is to improve health and well-being through taking action, including social change, which has been widely recognised internationally as a core principle of equal participation. 85 It is an orientation to research that focuses on relationships between academic and community partners, with principles of co-learning, mutual benefit and long-term commitment, while incorporating community theories, participation and practices into research efforts. 84

Engaging children in research

Just as minority ethnic groups have been under-represented in research, children have similarly been excluded from research,93,94 yet engaging both children and parents in research is vital for the success of interventions and the production of interventions with positive outcomes. 95 Paediatric research has traditionally utilised parents and carers as the primary information source, based on the belief that children do not possess the necessary communication and recall skills to express themselves,96 or that adult carers ‘know best’. 93,97,98 However, there is an increasing view that the best source of information about a child’s experience is the child himself,99–101 with reports suggesting that children from age 3 years can give graphic but accurate descriptions and demonstrate good recall for experiences related to illness. 100,102–104

Ethical constraints have also often prevented children’s engagement in research. Adults have power over children and, as a consequence, children are vulnerable to exploitation, including from adult researchers; engaging with adult carers is, therefore, a way of protecting children from harm. 105 Practical considerations have also hampered children’s research participation. Children have their own language, concepts and understandings that are distinct from adult versions and can be difficult for adults to access and interpret. 97 As a consequence, engaging adult carers is seen as a practical measure to gain interpretable data. 97 Children’s participation in research has also been influenced by documentation of children’s rights, such as Article 12 of the United Nations (UN) convention on the Rights of the Child106 which recognises a child’s right to participate in making decisions that affect their lives. Glauser107 indicated that ‘it is inappropriate that international organisations, policy makers, social institutions and individuals who feel entitled to intervene in the lives of children with problems, do so on the basis of obviously unclear and arbitrary knowledge about the reality of these children’s lives’. Thus, there is an urgent need to improve children’s engagement with research, particularly in the field of intervention design and research. There are many potential benefits of including children in participatory research, in terms of both improving the relevance of the research and personal benefits for children. However, it must be noted that there are also potential risks in including children in PR, including raising unrealistic expectations and placing an unreasonable burden on them. 108

A child is defined by the UN as person under the age of 18 years;106 however, childhood is more complex than a simple number. Definitions, understandings and expectations of children and childhood vary between cultures and societies. 109,110 These differences affect the expectations of a child’s developmental level at a given age, and the perceived appropriateness of a child’s participation in various activities, including research. When working with someone under 18 years, not only is their ‘child’ status considered, but their race, ethnicity, social class, religion and various other influences need to be evaluated in parallel. It has been suggested that the complexity of taking all of these factors into consideration when developing research projects may be a factor in why the voices of minority ethnic children are often missing from research. 110

Study aim

• To use a collaborative method of designing healthcare interventions to develop an intervention programme for South Asian children with asthma.

Study objectives

The MIA project sought to explore and answer four key questions:

• to test a participatory model of healthcare intervention development;

• to provide an evidenced-based understanding of asthma and its management in South Asian children;

• to provide a comparative analysis of understandings of asthma and its management in White British and South Asian children to account for geographical and sociocultural context; and

• to produce a realistic and achievable intervention planning framework for asthma management.

Research questions

There were four key research questions that the MIA project sought to explore and answer:

1. What are the lay understandings and perceptions of asthma in South Asian communities?

2. How do health professionals perceive asthma and its management in South Asian children?

3. What is the knowledge and awareness of asthma, its triggers, and control among South Asian families and children with asthma and, correspondingly, what are the facilitators and barriers to good asthma management?

4. What interventions to optimise asthma management are effective, acceptable and feasible for children and parents from South Asian communities?

The following chapter discusses the methodological approach of the MIA project in more detail.

Phase 1: systematic evidence synthesis

Phase 1 was a systematic evidence synthesis of the barriers and facilitators to asthma management in South Asian children, funded by Asthma UK and conducted prior to the MIA project. While this review was an important prestudy activity which contextualised the subsequent phases, it was not funded as part of the MIA study and is therefore not discussed at length in the rest of this report. An overview can be found in Appendix 1 with a copy of the report available online (www.asthma.org.uk) later in 2013. 46

Phase 2: community study

Phase 2 of the MIA study was a study of community perceptions designed to explore lay understandings of asthma and its management in children. The objectives of phase 2 were to understand the South Asian community perceptions of asthma and to gain an understanding of the ways in which families of children with asthma are perceived and treated by the wider community. Community focus groups and key informant interviews were used to explore lay perceptions among a range of individuals and groups and to take into account the wider cultural, religious and socioenvironmental context of a potential intervention targeted at asthma. The research team, in partnership with CFs, developed interviews and focus group question schedules built on the findings from the review in phase 1.

Phase 3: families and healthcare professionals study

Phase 3 aimed to explore the perceptions and experiences of families living with childhood asthma (South Asian and White British) and experiences of healthcare providers who had supported or treated South Asian children living with asthma, with a particular focus in barriers and facilitators to its management. Semi-structured interviews were carried out with South Asian children and their parents or carers to discuss and explore perceptions and experiences of living with asthma. A subsample of White British families were also interviewed in order to further clarify the role of ethnicity in determining barriers to management by assessing the perceptions of the ‘majority’ White British population (see Chapter 4). Semi-structured interviews were carried out with HCPs involved in the management of children with asthma. As the primary aim of the study was to develop tailored interventions for South Asian children, HCPs were asked only to comment on their experiences and work with South Asian children and their families (see Chapter 4). No attempt was made, therefore, to ask HCPs about perceptions regarding the care of White British children. Interview schedules were developed in partnership between the research team and CFs in response to the initial findings from phases 1 and 2.

Phase 4: development of potential collaborative intervention strategies

The aim of this substantial and iterative phase was to synthesise the data from all previous stages and to develop an intervention planning framework and exemplar programme for South Asian children with asthma. The objectives were to enable collaborative intervention development, and produce an acceptable and achievable intervention plan for asthma management. Findings from the phase 1 review, the phase 2 community study and the phase 3 family and HCP study were integrated, discussed collaboratively at workshops with families, HCPs and community members and refined into the final intervention planning framework and exemplar programme. This complex process was guided by principles of intervention mapping and took place following the process described in more detail in Chapter 1. Following on from the collaborative intervention development, the research team gathered data on participants’ experiences of the methods of intervention development to feed into a reflection and review of the process of collaborative development. Short semi-structured interviews were conducted with a sample of study participants, team members and advisory group members to explore their experiences of this method of intervention development. The data from these interviews was used to contribute to the team’s reflection on the process; a component of the iterative approach adopted, with a view to improving the process when applied to future projects.

Facilitation of community focus groups

A pre-set interview/discussion schedule was devised by the research team (see Appendix 4), informed by findings from the systematic evidence synthesis in phase 1 and consultation with the CFs, and the project advisory group. Discussions took place in both English and the appropriate South Asian language. The CFs were asked to convene eight focus groups: one Bengali female, one Bengali male, two Indian Gujarati, two Indian Punjabi, one Pakistani female and one Pakistani male. The language of the focus group was then a pragmatic choice based on the participants’ needs, for example both Pakistani groups were run in a mixture of English and Urdu with the CFs translating when necessary, one Indian Gujarati group was conducted in Gujarati, and the other Gujarati group was conducted predominantly in English. All discussions were recorded; those taking place in English were directly transcribed and interviews that took place in a South Asian language were translated into English by the CFs and subsequently transcribed.

Facilitation of key informant interviews

The key informant interviews used a semi-structured format with a question schedule informed by the findings of the systematic review and input from external advisors and the advisory group (see Appendix 4). Interviewees were offered their choice of language for the interview. The remaining interviews were conducted by a member of the research team in English. All interviews were digitally recorded, transcribed and translated where necessary. The data analysis utilised a framework based on the principles of IM (see Chapter 1, Intervention mapping as a structured process for intervention design). The themes from the data were extracted and transferred to standardised tables (charted) (see Appendix 5 for an example of the tables) used for phases 2 and 3 in preparation for the development of the intervention programme in phase 4. A narrative summary was also produced and is presented in this chapter.

Participants

Seventy-five participants were recruited to the community study in total, of whom 63 participants attended a total of eight focus groups (Table 2).

Community focus groups

As part of best practice, individuals were allowed to self-assign their ethnicity.

Key informant demographics

Twelve key informants were interviewed, comprising seven men and five women. Examples of their roles included religious leaders, community centre managers, community liaison officers, school–home liaison officers and support workers (Table 3).

Community focus groups: key themes

One of the aims of this phase was to inform the development of the interview schedules for the family interviews as well as informing the development of the intervention planning framework and exemplar intervention programme. The interviews, therefore, focused on organisational issues within the health system as well as issues related to the community or families. Several key themes relevant to asthma and its impact on families were identified from the focus group data and are discussed briefly below: understandings of asthma; impact of having a child with asthma; expectations for a child with asthma; influence of community attitudes; diet and asthma; using inhalers and other medicines; perceptions of the NHS; and suggestions for interventions to help families.

Understanding asthma

Key informants frequently discussed environmental factors as ‘causing’ asthma, with 4 of the 12 interviewees providing a view that overcrowding, worsened by large and extended families within South Asian communities, was responsible. A minority of informants perceived parental knowledge of asthma or misconceptions regarding asthma as a barrier to the effective management of childhood asthma in South Asian families.

I think it’s a lack, I think, of knowledge, I think.

KO081

I know there’s a quite high percentage of asthma affecting kids within our community. But I think it’s seasonal.

KI078

I think when it’s like minorities sometimes what the child needs in the diets, the Asian diets are completely different.

KI078

Potential impact on marriage

Key informants supported the view related to the impact on marriage prospects for children with asthma and suggested that this impact would be more significant for girls than boys.

When I talk about this, I’m talking about the girls . . . So, if your child, if a girl had asthma, and it depends how severe her asthma is, if we look at the severe cases and they do talk about it, that might be a problem [for marriage].

KI079

Activity levels for the child with asthma

The community focus group participants reported that children with asthma would have reduced activity compared with children without asthma and noted that this may be due to exercise-induced asthma symptoms limiting their activity or an expectation that a child with asthma should not participate in physical activity. Six key informants expanded on this concept and reported that South Asian parents were more likely to restrict activities when compared with White families, regardless of asthma. They described South Asian parents as being more anxious and protective over children in many regards.

Using inhalers and other medicines

Key informants were asked how they thought one’s cultural background would affect the way they thought about asthma or whether or not it would create problems. Two key informants felt that inhalers were unpopular within South Asian communities due to the visibility of inhalers and their being an obvious sign that one has asthma. This reflects the focus group data.

There is that sense of embarrassment. I think there’s quite a bit of that in the Asian community.

KI078

Complementary therapies

Most key informants reported that families should seek advice from HCPs but they also felt that, in addition, families would advocate herbal remedies, homeopathic remedies or yoga.

A lot of people you see, they turn to homeopathic treatments because, from background thought from back home, whether you’re Bangladeshi, Indian or Pakistani, you know, sometimes you go I’ve tried all this and it’s not worked, let me try this [homeopathic treatment].

KI078

Concealing asthma

Two key informants suggested that the fear of getting asthma management wrong (in comparison with community norms or medical models) or being regarded as a ‘bad’ parent by their social peers encouraged families to conceal the presence of asthma within the family. Several key informants felt parents did not inform schools of asthma due to families being embarrassed by their child’s diagnosis.

But a couple of families that do have [children with] asthma but, you know, they don’t come forward [and inform].

Key informant

Community perceptions of NHS management

The focus group with Pakistani women suggested that there was still an attitude among their community not to question doctors in addition to being too frightened to ask questions to health professionals. This suggestion was confirmed by five key informants. Specific language needs were also raised by six key informants as particular problems for families in understanding health conditions and in accessing services.

That doesn’t happen because of the language problems, whether there are no language leaflets in those . . . and even if there are leaflets, whether the parents have seen them, understood them, whether the right terminology has been used for them to understand, it’s a huge problem you know, it’s a huge huge area that needs to be looked at in a way.

KI084

Communication is the main thing at the moment. And to breach that area, you know, first, and then it’d be much easier for the parents to understand one thing or the other.

KI078

Communication skills were highlighted as a vital area that can be very challenging, with key informants acknowledging the difficulties that language barriers can raise for both professionals and patients.

If you can’t talk to your doctor properly, they can’t communicate with the patient they get a little bit agitated or you could say frustrated and that sometimes shows up in their, the way they are dealing with a case.

KI085

Key informants also felt that a patient’s communication skills could impact on how professionals perceive, frighten and disempower a patient by not listening to them. They also felt that professionals’ overall communication skills could be improved through the use of simple and clear explanations.

I feel that they are vulnerable [Bangladeshi mothers]. I think, professionals know that they are a weak community and . . . if they’re not literate in their own language, let alone English, they’re in a no-win situation.

KI079

That’s another issue, the plain English. You know, people think that if you speak Queen’s English or difficult English that shows how educated you are, but the most difficult job is to speak in simple language. The message should be conveyed. That’s your quality. What’s the point if you’re talking and nobody understands what you talk, rubbish!

KI088

Three key informants reported that South Asian families may not feel that they can speak up regarding poor-quality services due to the fear of any resulting consequences or as a result of embarrassment.

If there are individuals who cannot speak the language, or have limited knowledge of English language tend not to complain if they do not get appropriate treatment. The reason they do not complain, in some cases, in fact I spoke to an elderly lady and you would not believe what she said to me but it may sounds ridiculous to you and me but, to her, it as a real fear. She said to me, son, you don’t understand. If I were to complain of the treatment that I’m getting in hospital, which is not very good, the nurse may just give me the wrong injection and kill me off.

KI081

Sometimes if Hindus go to the hospital and if they are not given good care or attention, sometimes people don’t ask questions maybe because they are embarrassed or something.

KI083

Key informants identified a number of problems with the NHS organisational structure, particularly the difficulties of getting and duration of appointments, overstretched or a shortage of NHS staff and disorganised follow-up arrangements.

If they do attempt to go to the doctors, and they get that barrier there: you can’t have an appointment, it’s busy.

KI079

The GP sometimes is closed and is going to be many hours before you can actually see a doctor, sometimes; it is not easy to get an appointment to see the doctor.

KI085

The [GPs] don’t listen. You know, you might be saying: ‘oh, come on, come to the point, what’s wrong with you? Yeah okay this is what you do’ before they give you the time of day and, as I understand now, people are coming back and saying it has gotten worse because there’s an overload of, like, patients in surgeries so they’re not getting the service that they should be.

KI079

Key informants reported that dissatisfaction with health services was largely, but not exclusively, directed towards GPs, as opposed to other NHS services and professionals. Receptionists were also perceived to be a barrier to good-quality care.

I find that nurses do try and be helpful, they do want to help the parents, um, they find GPs very hard but, um, they find that nurses open more doors for them, that they talk on behalf of them, they help them.

KI079

Sometimes receptionist . . . they really upset people before they even go to doctor. So, starting from receptionist to, you know, they go to doctors, attitude is very, very important.

KI088

Accessing services and quality of services

Particular concerns were raised by key informants around how the diagnosis of asthma is made, with two key informants reporting a perception that GPs are not undertaking sufficient tests and are ‘jumping to conclusions’.

You go and the GP will say, ‘okay, yes, I know and I’ll write out a prescription’ without even checking you.

KI084

They don’t assess you.

KI084

Professionals’ attitudes were perceived to impact on quality of care. Two key informants reported ethnicity-based prejudice experienced by South Asian families with negative attitudes felt to be present in South Asian professionals in comparison with White British professionals. As a consequence, some South Asians preferred to see White British professionals.

There is no attention being given, only one person, no more questions, the sort of attitude nowadays doctor give it to the patients. What’s next? What do you mean? They don’t want questions. One person, second person, come next time.

KI086

The way they treat, their attitude; one doctor can make you almost cry where the other doctor can make you feel assured.

KI085

[When asked if professionals might treat an Asian child differently from a White child] From my experience of living in this country, I cannot say no . . . I don’t want to call doctors racists and this and that, but I feel it depends on the kind of background you [the doctor] personally come from . . . unfortunately some doctors are different from others.

KI085

Three key informants related the problems with quality of care in the NHS to financial restrictions or waiting lists. Others suggested that a less detailed assessment was likely in a ‘free’ service compared with one for which patients were paying directly. As a consequence, some families preferred to travel overseas to pay for medical assessments and treatments to receive what they perceived as a superior assessment in a timely manner.

Some people may think that it is the result of the waiting list and that they’re not treating their asthmatic child enough. So there’s also this factor, they may go across to India or another part of the world to get treatment.

KI081

Like people may feel that the doctor is not giving me the correct medication, they are not responding, let’s go to another part of the world, maybe because it’s free in this country so they’re not taken as much care, let’s go to India, pay and get it done.

KI081

Preferences for which HCP families would feel most comfortable with and in which locations families would prefer to be treated were also discussed. One key informant felt that female doctors would be taken less seriously than male doctors as a result of the cultural perception of males and females in society. Another key informant felt that families would prefer to see doctors rather than nurses, with another highlighting the desire to be seen quickly as a driver for attendance at ED.

When an individual of that nature goes to see a doctor, and say it was a female doctor, I think there may be slight difference as to how they take advice as it would be if it were a male doctor. Not because one is superior to the other, it’s just that they may have come from that background where the man is the dominant factor in society and so a woman is not regarded in the same level.

KI081

If anything happens to my child, he obviously can’t breathe and this and that and it will come to asthma, taken straight away they go to A&E [accident and emergency] because they feel comfortable that at least someone is there to look after my child.

KI086

One key informant raised the issue of the difference between NHS services and herbalist services, perceiving that herbalists considered aspects of health not considered by doctors, such as diet.

Okay, if you go to herbalist, they will tell you want you can eat, what you can’t eat. Yet, doctor never tells you what to eat. Back home, doctor used to tell us what you eat, what you don’t eat for this condition, but here doctor never tells you.

KI088

Others felt that having an understanding of how South Asian communities function and are structured was important in managing South Asian children with asthma.

There’s the medical profession, nursing staff, doctors etc. They need to know the differences in communities, how different communities operate.

KI081

Key informants also discussed how best to address knowledge gaps and effect change within South Asian communities and the NHS by highlighting the importance of grassroots participation and the benefits of partnership in promoting and improving services. The impact of literacy on health promotion efforts was also recognised.

The top level and the grass root level needs to mix. I find that the top level and the bottom level, the gap in communication, it’s massive.

KI078

There should be some sort of input from community and the doctor’s forum in relation to how the public sees doctors, etc. And I think there is still a detach between provider and the client and I think that is to be reached somehow.

KI081

[When discussing how to reach out to communities and effect change] Other way of doing it also is to show partnership working. I’ve seen the benefit of partnership working . . . we need to sort of tap into more joined up working. Let’s move away from the person who sits in the ivory tower and says this is what I think is best for the community. Do this in consultation with the community, may be one way forward.

KI081

How did phase 2 relate to subsequent phases of the Management and Interventions for Asthma project?

The data collected from the focus groups and key informant interviews directly informed the interview/discussion schedules for the family and healthcare providers in the family study. For example, evidence from the systematic review (see Appendix 1) identified that findings from India and Pakistan indicated the existence of stigma associated with asthma. The community study demonstrated that stigmatisation is also present in the UK, even if it is not overtly recognised as such, with the views of extended families likely to be of key importance in asthma management. While there was a suggestion among all groups that negative attitudes were receding, there remains a need to consider stigma, particularly for young girls, and how this might influence family management of asthma. Consequently, this topic was included as a specific prompt for interviews in the family study.

In developing the intervention described in Chapter 5, data from the focus groups and key informant interviews were reviewed to identify community and organisational behaviours and determinants within the IM framework. These data additionally contributed to the discussion of the impact of service organisation. Participants from the community study were invited to collaborate with the team in designing the intervention, with many of these participants taking part in subsequent parts of the project, which consequently added an important community perspective to the intervention development.

Phase 2 of the MIA project also demonstrated that engaging South Asian participants from a range of cultural, religious and linguistic backgrounds was possible. The utilisation of CFs ensured successful recruitment and full participation, with the phase 2 participants being an essential part of the research process. They assisted in recruitment for the study by suggesting additional recruitment avenues or by inviting friends and colleagues to join the study, an example of community engagement, mobilisation and participation.

This chapter has discussed the findings from the qualitative data in the community study of the MIA project via the examination of community members’ and key informants’ perceptions, thoughts and experiences regarding asthma and children in the South Asian community, and their experiences of accessing health care and services. The following chapter will examine the perceptions, thoughts and beliefs of families within the South Asian community who have children living with asthma.

Sampling frame

Purposive sampling was used to ensure proportional representation from the main South Asian groups (as in phase 2), as well as to ensure inclusion of children with a broad range of asthma severity (judged by position on the BTS steps of asthma management; see Appendix 6) and from both sexes (Table 4). Purposive sampling was used to ensure participation of families from each of the six main religious-ethnic groups described previously: Indian Gujarati Hindu; Indian Gujarati Muslim; Pakistani Muslim; Bangladeshi Muslim; Indian Punjabi Sikh; and Indian Punjabi Hindu. The aim was to interview up to a maximum of 30 South Asian parents or carers and 30 South Asian children.

Purposive sampling was subsequently also used to select a sample of White British families broadly matched to the South Asian families. This strategy allowed sampling against previously identified, theoretically relevant variables. 154 The South Asian family data (see Appendix 7), along with the review of the existing literature (phase 1; see Appendix 1), identified that the sex of the child with asthma and the SES and education of parents might be of importance in shaping families’ experiences of managing asthma and access to services. In order to sample according to these characteristics, a simple sampling matrix was constructed to enable selection of potential participants from a cohort of volunteers on the basis of these predetermined attributes.

The required number of participants for each attribute category was determined by broadly matching to the proportion of cases already in the study. While this helped to develop a preferred model against which to sample the White British subgroup,155 the constraints of the voluntary and time-limited nature of recruitment meant that this model was not entirely achievable. However, the resulting sample was sufficient to allow confidence in the transferability and comparability of the data with South Asian families. Excessive geographical variation in the sample was restricted by recruiting all families (South Asian and White British) from the same region. This also ensured some consistency in terms of healthcare service provision. Parental employment status and occupation were used as proxy for SES. The research team did recognise, however, that this was an imperfect predictor, particularly in minority ethnic communities where equality of opportunity in education and employment had not been a typical experience. 156,157

Recruitment

Multiple recruitment avenues were used to identify and approach families in order to ensure variability of experience within the sample. 158 Table 5 identifies the numbers of families approached via the various recruitment avenues.

Thirty South Asian families were interviewed in total. They comprised 44 parents (n = 29 mothers, n = 15 fathers), 5 secondary carers (n = 4 female, n = 1 male) and 33 children (n = 20 boys, n = 13 girls) with a total of 82 South Asian family participants. Families originated from a range of ethnic groups, identified by asking participants to self-assign their ethnicity and religion (Table 6).

There were 33 South Asian children recruited in to the study (n = 20 boys, n = 13 girls), aged between 5 and 12 years: seven were at BTS level 1, 17 at BTS level 2, six at BTS level 3, three at BTS level 4 and no children were at BTS level 5.

Fourteen White British families were recruited, comprising 17 parents (n = 13 mothers, n = 4 fathers) and 14 children (n = 8 boys, n = 6 girls).

The White British children were aged between 5 and 11 years: three were at BTS level 1, eight at BTS level 2, three at BTS level 3, and no children were at BTS level 4 or 5.

South Asian and White British children provided a proportionally good representation of asthma severity in the UK.

Methods

Results

Sampling

Purposive sampling was utilised to ensure representation from medical (primary, secondary and tertiary) and nursing professionals from acute and community services and from professionals at different stages in their careers (Table 15).

Data collection

All HCPs spoke English, enabling all interviews to be conducted by the research team. Participants were offered the option of one-to-one or group interviews if more than one person at a particular practice wished to participate. In recognition of their limited availability, flexibility in the approach to data collection with HCPs was crucial to securing their participation in the study. Methods of recruitment were amended to ensure that adequate HCPs could be recruited into the study and that interviews could be carried out at a time convenient for them. The interviews were conducted using a semistructured format with a question schedule based on the interim findings from phases 2 and 3 (see Appendix 4). Demographic data collection forms were completed at the end of each interview. All interviews were conducted face to face at the participant’s place of work and were digitally recorded and transcribed. There were 37 HCPs recruited: four GPs, one trainee GP, one health visitor, one inclusion manager, one nurse, two paediatric ED registrars, one paediatric respiratory consultant, two paediatricians, three community pharmacists, one paediatric intensive care unit consultant, one practice manager, three practice nurses, one research assistant, five school nurses, one senior hospital play specialist, two staff nurses, one student children’s nurse, one ward sister, three community children’s nurses, one foundation year 1 (FY1) doctor and one clinical operational lead. Data saturation (ensuring validity of the findings) was reached for the entire sample and gave particular confidence in relation to smaller, subpopulation numbers. Validation was ensured by checking back with the clinicians that their messages had been accurately represented and heard.

Analysis

The interviews were analysed using standard methods of thematic analysis to identify key themes. In addition, the data from the interviews were further organised according to principles of intervention mapping and were compiled into charts to facilitate the intervention design process (see Chapter 5). To maintain professional anonymity, the professional roles of the interviewees have not been disclosed in this report.

Results

The following key themes were identified and are discussed below: consultations with South Asian families; South Asian family barriers to asthma management; and professional and organisational barriers to asthma management.

Accessing care

Accessing appropriate care is essential to ensure a timely diagnosis, optimisation of treatment and the prevention and management of acute attacks. Previous experience of contacts with the health service can influence future health-seeking behaviour,162 both positively and negatively. As with other chronic conditions, the aim for asthma management is to keep a child functioning at the optimal level, attending school and preventing hospital attendance. 162 Within the NHS, primary care services are available to initially provide a diagnosis of asthma and regular reviews to optimise management, with ‘out-of-hours’ services and emergency services being available for urgent care and acute severe attacks. In practice, however, emergency attendances for all clinical problems are increasing,14 with a higher attendance rate for South Asian children with asthma than for White British children. Drivers for this health-seeking behaviour need to be understood if families are to be encouraged and supported to manage their asthma and to choose primary care services in preference to emergency care. In this study, difficulties expressed by parents regarding the most appropriate place of presentation during an acute attack highlighted an important problem with current provision and access to the NHS. South Asian families in this study chose to access the ED if they were unable to access their GP. In contrast, White British families were more likely to use the out-of-hours service provided by the NHS. These differences were driven by previous experiences of using the health system (e.g. being referred to the ED during previous acute asthma attacks, or experiencing negative or delayed appointments with their GP) as well as difficulties in the recognition of the severity of symptoms and, as a consequence, this delayed timely access to treatment.

In the current study, none of the South Asian families and very few of the White British parents had any formal means of assessing their child’s symptoms. No parents had been provided with written asthma plans, while a minority of White British families reported using peak flow meters. No one reported employing any objective measure of severity. Without being able to assess severity, parents are unable to know at what point and where to access health care for early intervention. This may also lead to a quick deterioration in the child, with the need to seek urgent care from the ED and, in some cases, to call an ambulance for help.

Both White British and South Asian families expressed feelings of being ‘fobbed off’ within the healthcare system and described delays in getting a diagnosis, which subsequently led to feelings of frustration or anger. Despite this, all families described the need to use the GP as the first point of contact in a non-acute situation. In an acute situation, the patterns of presentation to primary care or emergency services differed between the groups. Despite their disappointment with ED waiting times, South Asian families would self-refer to the ED and bypass other services in the next event if they had previously been referred there via NHS Direct or the out-of-hours services; this reinforced the idea that South Asian families perceived hospital services as more expert or knowledgeable than primary care. They were also more likely to call an ambulance if they were concerned about their child.

Organisational discrimination

Despite a tendency for families to feel that they had not been discriminated against, the interviews with HCPs revealed the potential existence of problematic cultural stereotypes about South Asian families within the NHS. South Asian families were viewed as ‘difficult clients’ rather than being recognised in the context of the structural discrimination facing patients whose needs are not aligned with the majority White population. 163 A tendency to see South Asian families as inappropriate users of services (e.g. overuse of A&E services, non-attendance at follow-up) was present in our data; this reflects the stereotype of minority ethnic patients themselves being part of the problem of providing adequate services, a type of ‘victim-blaming’. However, HCPs did also recognise that services were not currently structured in a way which would enable them to meet the needs of South Asian patients, especially in relation to having the time to give more information and to use interpreters.

Children’s experiences

The team considered it important to engage children and to gain an insight into their perceptions of living with asthma. The children also provided suggestions for interventions. By involving them in this phase of the study, a partnership and relationship with them that supported their involvement in phase 4 of the study was developed.

This phase of the study found that there was considerable similarity in the experience of asthma described by South Asian and White British children. As with the adults interviewed, children from both groups expressed some confusion around either the causes or the triggers of asthma, and described not knowing what asthma was or why they had been diagnosed. These findings suggest inadequacies in the education of children about their condition. In their interviews, both groups of children focused on their experience of acute attacks and described the strong emotions they felt during or about these attacks. They reported often feeling frightened and upset. 164,165 However, when describing their interaction with HCPs, they could not recall discussions about why acute attacks might arise or what to do in this situation. This suggested that HCPs were not communicating these important messages adequately to children. In their recall of visits to the GP or practice nurse, children reported discussions of administering and monitoring medication. They could not recall any holistic discussion about school attendance or more general quality of life issues.

Previous evidence in health research has consistently demonstrated that ‘feeling normal’ is important to children. 165–167 A desire to be ‘normal’ was commonly expressed by children in the current study. This was sometimes in relation to the unfairness of restrictions associated with having asthma in comparison with siblings, or the embarrassment of having to use inhalers in public. Research has documented feelings of embarrassment about having asthma among teenagers, with those who felt embarrassed about their asthma significantly less likely to carry or use inhalers in front of others. 165 Feelings of embarrassment were expressed by children from both groups in this study. Parents and focus group members also described potentially negative reactions from members of the wider South Asian community if they were aware of a child having a diagnosis of asthma. This highlighted the possibility of children in South Asian communities having greater potential of experiencing asthma-related stigma.

One way in which children could be made to feel ‘different’ from other children, especially at school, was in relation to non-participation in sporting activities. Despite the fact that children with asthma are encouraged to participate in sport,168 children (and parents) reported a lack of engagement in these activities. This would appear to reflect a lack of appropriate guidance for parents, children and teachers about appropriate management of asthma. Parents, in particular, expressed concerns that schools were not always fully knowledgeable about medication and how to administer this. Nevertheless, in general, children acknowledged that friends and teachers were important agents in helping them to manage their asthma, indicating that schools can be important sites for delivering asthma interventions. 169

Suggestions for service improvements

Families, children and HCPs offered numerous suggestions for how the provision and quality of service could be improved. Families discussed how an advice centre or telephone service would be useful for when questions arose. Families, children and HCPs suggested working closely with and in schools to educate and inform children, not only those with asthma but also the wider community, to improve education and remove the stigma associated with asthma and inhalers. Families, children and HCPs also suggested that presentations or information centres at easily accessible local community venues, such as temples or community centres, might be places where doctors, nurses or people with experience of asthma could provide information or demonstrations of inhaler techniques. Children reinforced their desire for face-to-face demonstrations or meetings with people who had experience of asthma. Families and HCPs suggested the production of leaflets and posters in multiple languages to ensure that most people’s information needs could be catered for. Families reported that a better diagnosis system was favoured, as current difficulties with diagnosis caused stress and anxiety to families. HCPs had many suggestions for the improvement of care, including lengthening GP appointments, providing follow-up appointments with asthma nurses and the provision of education programmes for HCPs to ensure consistency of care. This consistency was something that both families and HCPs alluded to, with the suggestion of integrated medical health records between all HCPs. These suggestions fed directly into the next phase of the MIA project and helped to develop the intervention framework.

Identifying themes

Identified behaviours and putative determinants were discussed and grouped inductively by the research team, using the constant comparison method to compare and consider each behaviour and determinant against other behaviours and determinants to allow the identification of similarities and differences. Behaviours, determinants and groupings were collated, compared and contrasted until data saturation was reached. This process resulted in the identification of 11 key themes (Table 16).

Creating an intervention planning framework

The 11 key themes, each corresponding to an aspect along the asthma management pathway and underpinned by evidence collected in previous phases of the study, were combined within an intervention planning framework. This enabled the examination of potential barriers and facilitators to asthma management identified within each theme (from phase 1 to 3 data), as well as behaviours and determinants within each theme potentially amenable to intervention.

Using the intervention-planning framework

The intervention planning framework presented an overview of the aspects of asthma management that required intervention, complete with the evidence base supporting that need and example interventions that had been applied in previous research (see Appendix 10) shown in the rapid review of existing asthma interventions. The intervention planning framework can be a valuable research tool, but moving from an evidence base to developing an effective intervention is challenging. Techniques based on steps 1 to 4 of IM were used as the basis for a structured approach to intervention design. Given the volume and complexity of data generated during phases 1 to 3 and the time and resource constraints of the project, a pragmatic decision that only one theme from the intervention planning framework would be selected for further development (see Finalisation workshops, below) was taken to demonstrate the translation of qualitative data into an evidence-based tailored intervention program. Expert advice was sought from K. Bartholomew, an expert on IM, for this plan in order to ensure that a comprehensive and holistic perspective could still be taken when designing the intervention framework with the inclusion of only one aspect. Collaborative workshops were thus carried out to enable the selection of a theme for further development (section B). Despite selecting only one theme, it can be argued that the methods employed to design the intervention programme for this theme provided a model process that could be applied to other themes.

Layperson workshops

• The findings were presented orally, supported by PowerPoint displays and hard copies available at each table.

  • Participants were grouped according to language requirements.

  • CFs provided simultaneous whispered translations during the presentation in one of five languages as required by participants.

• The ranking data sheets (see Appendix 9) were presented, along with examples of how to complete them.

  • A linear ranking was used, with no equal placing allowed.

• Participants were asked to rank the 11 key themes based on the presentations they had just heard.

• This was followed by a small group discussion of the 11 themes presented, which focused particularly on the level of need for an intervention to be developed for each of them. The team reassured the participants that all of the themes were recognised as important and would be presented in the report. A facilitator from the research team and a CF were present to support the groups and answer any questions that arose during the exercise.

  • The aim was not to achieve consensus but rather to share different views to provide participants an opportunity to consider their initial choices.

• Participants were asked to use the second data sheet to rerank the themes.

  • A linear ranking was used, with no equal placing allowed.

• Participants were asked to use the third data sheet to explain their reasoning or add any other aspects of managements that they felt had been omitted in the workshop.

• The data from the first and second workshops were tabulated with the Borda approach used to calculate overall priorities (Table 17) for ranking results.

Finalisation workshops

Workshop attendees

All participants from phases 2 and 3 who indicated agreement to be contacted were invited to attend the workshops. This was in addition to community members who had returned expression-of-interest (EoI) forms, but had not yet been recruited into the study. Participants were also encouraged to invite extended family members to the workshops in response to findings from phases 2 and 3. These phases argued for wider community inclusion in intervention development, with workshops an excellent opportunity to engage the wider community in developing asthma interventions and to raise the profile of research. The finalisation workshops brought together the South Asian and White British participants in order to help identify generic and specific components for the intervention programme. Bringing both groups together demonstrated a shared goal and helped to validate the findings.

One hundred and twelve South Asian participants (62 community members, 29 parents of children with asthma and 21 children) and six White British participants (four adults and two children) were involved in the workshops.

Selection of the exemplar theme to demonstrate the intervention programme development process

An exemplar theme was chosen for which a multifaceted intervention programme could be developed and process demonstrated following the review of the ranking data from the collaborative workshops by the CFs and research and advisory team. Workshop rankings indicated that the processes and procedures involved in ‘getting a diagnosis’ were a high priority for families, but not for HCPs, who ranked it much lower down. As mentioned previously, in relation to this project, ‘getting a diagnosis’ covered a number of steps required with the diagnostic process and not solely the narrow steps of investigating the child to confirm or refute a diagnosis. Data underpinning the ‘getting a diagnosis’ theme, therefore, overlapped, with some other themes identified that emphasised the need for a multifaceted integrated approach to tackling themes. The notable discrepancy in the ranked priorities between families and HCPs suggested that ‘getting a diagnosis’ was ideally placed to allow further dialogue between families and professionals; notably, highlighting the professionals’ suboptimal delivery, even where guidelines and procedures are in place. As the planned intervention programme would be designed around the needs of the children and families, this underscored one of the fundamental principles of the MIA project and current NHS policy,72 and was a further reason why this theme was considered a priority for further development. Data from phases 2 and 3 revealed that ‘getting a diagnosis’ underpinned all aspects of condition management, including access to asthma services, information and education, and knowledge of acute asthma attacks. By intervening in the diagnostic process, the educational aspects and knowledge of how to approach an acute asthma attack could also be incorporated into an intervention and thereby incorporate children’s voices.

Using techniques drawn from intervention mapping to develop intervention programme components

To develop the exemplar intervention programme, a structured approach to analyse available data was undertaken utilising techniques drawn from IM, which in turn draws upon psychological theories. The adapted process was developed in conjunction with K. Bartholomew, an international expert in IM. IM typically follows six iterative steps (see Chapter 1). However, the aim of the MIA project was not to implement and evaluate an exhaustive intervention programme, but rather to assess the collaborative methods used in enabling children, families, communities and professionals to work together to develop an intervention programme. As a consequence, an adapted IM approach was taken, utilising IM steps 1 to 4 (Table 20 and Figure 5). IM is an iterative process and, thus, each step was visited on more than one occasion.

TABLE 20 - Intervention mapping steps used in the MIA project

Step	Description
1	Needs assessment
2	Identification of outcomes, performance objectives and change objectives
3	Selecting methods and practical strategies
4	Creating an organised programme plan

FIGURE 5.

Intervention mapping methods used. ACT on Asthma, Awareness, Context (cultural and organisational) and Training.

Needs assessment

The literature and scoping reviews of phase 1 and qualitative data collection of phases 2 and 3 comprised the needs assessment, which permitted the identification of the barriers and facilitators to achieving effective asthma management in South Asian children.

Identification of outcomes, performance objectives and change objectives

Following the selection of ‘getting a diagnosis’ as the exemplar, the main programme outcome focused on achieving a clear, accurate and timely diagnosis of asthma.

Performance objectives, which can be defined as specific sub-behaviours that feed into the overall programme objective, were constructed by answering two questions:

1. What do participants currently do?

2. What do participants need to do instead to achieve the desired programme outcome?

Members of the research team participated in a ‘brainstorming’ session to generate steps to articulate the performance objectives guided by the answers to the above questions. Additionally, the performance objectives were informed by salient theories from clinical and health psychology which explained determinants and maintainers of health-related behaviour (see Appendix 17).

Phase 1 indicated that achieving a diagnosis might be related to improved knowledge, high self-efficacy, outcome expectancies and perception of risk. As a consequence, self-regulation theory176 and social cognitive theory177 were used to enable the creation of change objectives. Change objectives result from merging performance objectives with theory.

Selecting methods and practical strategies to bring about change

Section C, mapping to step 3 of IM, ensured that change objectives were linked to practical, feasible strategies for behaviour change which were also theoretically embedded. When completing this phase to identify practical strategies and provide the team with examples and ideas, previous interventions that had met with success identified from the scoping review (see Appendix 10) were considered in conjunction with theory.

Scoping review

The scoping review identified 408 examples of asthma interventions trialled for, with or on children; four were targeted to South Asians. Three of these interventions focused on education and clinical support, with one including additional elements of raising awareness. The scoping review of interventions undertaken as part of this study (phase 4; see Appendix 10) demonstrated that the majority of current asthma interventions have been developed by professionals and then tested for effectiveness with a target population; in most cases, this was a majority ethnic population. The interventions identified in the review often lacked a multifaceted integrated approach, with most being delivered in one setting with little consideration of the experiences of patients across the whole pathway of care. Most interventions (whether universal or tailored) are developed from the perspective of service providers rather than including a detailed exploration of patient perspectives. Comprehensive asthma programmes were reported from the USA178 or Australia, with very few reported in the UK. Furthermore, very few culturally tailored interventions were identified by the review, with fewer still ‘generic’ interventions tested in minority populations.

The scoping review was useful in highlighting previously successful interventions and the delivery methods used to direct the research team to the most successful intervention methods. This scoping review informed subsequent sections of the project. In addition, to ensure that any practical strategies would be fitting and culturally tailored to the target population, the qualitative data from phases 2 and 3 were also considered, especially with data regarding ideas for future interventions (Figure 6; see Appendix 11).

FIGURE 6.

Process of selection methods and strategies to effect change in the MIA project. ACT on Asthma, Awareness, Context (cultural and organisational) and Training.

During the process of selecting methods and strategies to effect change, modelling was noted to be a recurring theory-based method which addressed a number of change objectives (i.e. to encourage parents to believe that going to the GP has value for them and their child; to enhance parents’ belief that they will be able to have an effective consultation with their GP; to encourage a child to believe that expressing their symptoms will be of benefit to them; and to enhance HCPs’ belief that improving consultations will improve management). Thus, from a theoretical perspective, the use of vignettes or role-model stories to demonstrate success in managing these objectives was deemed a very appropriate component of an intervention programme. Vignettes and stories were also attractive because they can be delivered in multiple contexts and formats and can be produced within a fixed budget.

The MIA project aimed to develop a feasible intervention programme with the subsequent step to consider the scope of the draft intervention. An expert steering group comprising L.K. Bartholomew, the CFs, the advisory group and external experts was consulted to evaluate core versus peripheral elements of the intervention. The steering group suggested a number of additions and considerations (see Appendix 12) to support feasibility. These suggestions are summarised below.

1. The impact on NHS workloads, including organisational capacity to cope, needs to be considered when raising awareness of asthma.

2. Integrated and secure information technology (IT) services were deemed essential for programme success.

3. Strong support from HCPs to enable behavioural change, encompassing education, skills training and organisational revisions would be necessary for implementation.

4. Lay and professional educator partnerships could be pragmatic and effective educational delivery systems.

By taking the above points into consideration in addition to the qualitative data from phases 2 and 3, the research team were able to identify salient components of an intervention programme aimed at improving ‘getting a diagnosis’ of asthma. Mindful of the IM model and the scoping review of interventions, it was concluded that awareness (addressing knowledge deficits), context (mindful of cultural and organisational parameters) and training (to enhance self-efficacy and encompass education) were essential components of the intervention program. This led to the coining of the name ‘ACT [Awareness, Context (cultural and organisational) and Training] on Asthma’ when making reference to the intervention programme. ‘ACT on Asthma’ recognises that achieving a diagnosis of asthma does not only rely on the medical investigations but starts with awareness of the symptoms, awareness of the services available for diagnosis and awareness of the procedures for diagnosis. These all require the involvement of children, parents, communities and HCPs. The context in which the programme was to be implemented was equally important. Within the UK, health service organisational barriers impede presentation to professionals, communication between families and professionals, and professionals’ ability to utilise existing asthma diagnostic pathways. Training enables children, families and professionals to achieve greater awareness and overcome organisational barriers.

Translating strategies into organised programme components

The process used to develop the ‘ACT on Asthma’ intervention programme resulted in a multifaceted intervention, simultaneously addressing several levels of the socioecological model. Each arm of the ‘ACT on Asthma’ intervention programme was translated into component parts. The programme was thus based on both the principles of participatory research – shared knowledge expressed by service users and providers, starting at grassroots level and building upwards – and the socioecological approach of moving the focus away from individual knowledge, attitudes and behaviours and towards the wider layers of influence that include the community and social context, environment and organisational systems.

The research team reviewed change objectives and strategies to identify key components that were encompassed by the majority of strategies. Consideration was also given to strategies that fit the theories we were drawing upon. It was during this process of developing and designing intervention components that the value of IM appeared most evident: intervention components and content of material was directed by previously noted strategies from the scoping review (see Appendix 10), and theory. For example, the suggestion of the use of layperson and professional educators was informed by social cognitive theory, with respect to role models who would be culturally and professionally acceptable. Similarly, the use of vignettes and stories woven into education and training modules was informed by modelling. This presented the opportunity to demonstrate effective coping or develop beliefs that particular strategies would have benefit.

The draft ‘ACT on Asthma’ intervention diagnostic programme

The intervention programme was underpinned by the findings from the qualitative research work carried out with communities, parents, children and the HCPs in phases 2 and 3 of the project and informed by the systematic evidence synthesis in phase 1. The proposed intervention programme represented an enhanced service for the management of paediatric asthma. The data from previous phases of the study highlighted the need for consistency within the NHS. Consideration by the team regarding the delivery of consistency across a range of services across an asthma pathway led to the draft programme being centred on a co-ordinating team with satellite arms reflecting the different elements of the programme, providing a multifaceted but integrated approach. The proposed arms of the intervention programme are the mechanisms for delivering the intervention, and these do not change regardless of the ethnicity of the families involved. However, the content for each arm comes from the data collected in the previous phases, and as such the content would need to be tailored for South Asian families based on differences reported in the data (see Tables 8–14). Each arm of the enhanced service linked into the others; however, by co-ordinating from one central team, consistency of message and the ability to effectively co-ordinate asthma management across the multiple services involved would be enhanced. The basis for each arm is presented below.

Clinical support arm

The aim of this arm of the programme was to ensure consistency and quality of diagnostic approach regardless of where the patient presents for diagnosis and management. The aim was not to take over all asthma management, but to offer additional support to GPs.

Raising-awareness arm

The aim of this arm of the programme was to increase awareness of asthma among South Asian families, communities and professionals working with South Asian families as a means of enhancing the timeliness and accuracy of diagnosis of asthma in South Asian children. Our work recognised that this was more relevant for the South Asian families than the White British families; this highlighted the importance of the inclusion of this arm.

Education and skills training arm

The aim of this arm of the programme was to provide a multicomponent programme of education and skills training modules that would provide a shared and consistent platform for education and training for all. This would ensure consistency of messages across the service. This was an important arm for all families, both South Asian and White British, but as we see from previous phases (2 and 3), the content needs to be specifically tailored.

Economic evaluation

A health economist was employed to review the programme in order to identify the key cost elements and in reference to specific examples, to assist in costing this intervention programme to the NHS. A scoping exercise, rather than a definitive economic analysis, was conducted. It was not a cost-effectiveness analysis and aimed to provide an indication of the resource items that might require costing should the proposal be implemented (see Appendix 13). The economic evaluation showed that full implementation of the ‘ACT on Asthma’ programme would be relatively costly. However, the MIA study has provided information that can be utilised in several contexts and offers insights into both substantive issues of asthma management and a process of working with communities, families and HCPs from which both parents and providers can draw a range of actions to improve the asthma management pathway for children.

Sampling and recruitment

All participants who indicated agreement to be contacted were invited to attend this workshop: no additional participants were recruited into the study at this stage. Thirty participants participated in the finalisation workshops (two HCPs, 15 parents with a child with asthma, 12 children and one key informant).

Methods

Participants were divided in advance into groups. Adults, children and HCPs were intentionally mixed; however, those with a need for interpreters were placed together according to language requirements. CFs were present to act as discussion facilitators and interpreters throughout the workshop. The draft intervention programme was briefly presented, followed by directed small group discussions to explore one particular aspect of the intervention programme. Group opinions were then fed back to the workshop. Within each group the facilitator was tasked to ensure that the tone and language remained accessible to the children present. This validation and revalidation process ensured that thoughts and feelings on the intervention from the communities involved could be heard and to ensure that participants’ messages had been heard and interpreted correctly. It was an iterative process whereby changes to the intervention programme were based on findings from this workshop to ensure that any changes were applicable and appropriate.

Workshop findings

The revisions were incorporated into the proposed intervention programme elements, with ‘ACT on Asthma’ modified to a four-arm programme, with the addition of an advice centre, based around a co-ordinating team.

Supporting evidence for the addition of an advice centre arm

From the finalisation workshop, it was evident that participants desired an advice centre, and they suggested a mobile unit where drop-in sessions, educational sessions and raising awareness could all occur. Parents felt that an advice centre would be useful, particularly if it was led by a trained layperson with bilingual staff. An advice centre could be a place for coffee mornings or to meet with other parents who live with a child with asthma, reducing any feelings of isolation that may exist within the community. In addition, many parents and HCPs in phases 2 and 3 suggested the utilisation of an advice centre.

Education and training arm

The education and training arm would be presented as 14 modules, drawn from the qualitative data in phases 2 and 3. The content of the education modules was informed by the qualitative findings from previous phases alongside the understanding of the inter-related, multidimensional nature of problems that arise along the asthma pathway. This emerged from the family data in phase 3 and suggested that the issue of diagnosis inevitably impacts on other aspects of asthma management. This highlighted the necessity for the educational modules to incorporate other aspects of asthma management alongside getting a diagnosis. Some of the modules included were generic and relevant to all families; however, some were more relevant to the South Asian families and tailored to them to respond to the data reported in previous phases, particularly relating to complementary therapies and diet and asthma.

Modules selected were:

1. signs and symptoms – general knowledge of the symptoms of asthma or of asthma as a potential explanation for common symptoms

2. medicines for asthma – knowing what the different medicines are, what they are for and the benefits and negatives of taking them

3. inhaler skills training for children – specific ideas and tips for supporting children to take inhalers effectively

4. complementary therapies for asthma – advice and information on the evidence for or against the use of complementary therapies for asthma, including herbal treatments and breathing exercises

5. diet and asthma – specific advice on traditional dietary restrictions or encouragements within South Asian communities thought to be beneficial for asthma management

6. how to use the NHS – overview of NHS structure, what services are available and the importance of returning to seek further information and support, including the right to ask questions

7. acute versus preventative management – overview of why preventative management matters and the psychological principles of self-management

8. achieving effective consultations – communication skills training in how to achieve a successful consultation, with tailored advice according to whether it is being delivered for laypersons or for HCPs

9. mythbuster – common myths, ideas and suggestions in relation to asthma, with the evidence for and against each one

10. household adaptations and asthma – the current guidance on what changes to make around the home and why/why not

11. what to expect for a child with asthma – looking at what to expect from a child with asthma, levels of activity, strength and future careers

12. diagnosing asthma in children – explaining the diagnostic pathway for asthma

13. explaining asthma to children – skills and tools for explaining asthma

14. asthma and school – what parents should expect from schools, what schools should expect from parents, managing absence.

The modules would be grouped together and delivered as a fixed course. Completion of all modules would be necessary for completion of the course, although this could be achieved intensively (over a 2-day course) or gradually (by attending evening sessions over a period of weeks or months). The modules would be delivered face to face by a lay facilitator and a professional facilitator working together. There would also be a resource pack available online and given in hard copy to attendees. The modules would have three delivery formats: one for children, one for parents/laypersons, and one for professionals. Although presented differently, the content would remain broadly consistent regardless of delivery format.

Clinical support arm

The clinical support arm would be based on a linked computer system that could be used for referrals, for electronic advice and to monitor prescriptions for inhalers and audit data on paediatric asthma outcomes.

The IT package would include a computerised pro forma that prompts the professional to perform the required education, follow-up, referrals and tests, and monitors their completion. This pro forma would be the only referral needed to access any asthma service across the region, with the professional ticking which services are required and the co-ordinating team liaising with other service providers to fulfil the request.

The co-ordinating team would map all asthma resources in the local area, including the expertise and resources available at each GP practice in relation to diagnosis and management of asthma in children. This would enable the co-ordinating centre to receive referrals and advice/information requests from GPs or other HCPs and direct their queries to the appropriate resource.

Advice centre arm

An advice centre that anyone can attend, staffed by a mixture of volunteers and educators, would be set up. The advice centre would contain hard copy and electronic resources relating to asthma, functioning as a library. It would also be a centre for informal advice and conversation and a location for evening education and skills training modules to be held. The advice centre would also be available by telephone, with links to the Asthma UK advice line, such that local persons could ring the advice centre, and if their query could not be answered locally, Asthma UK could be contacted as needed.

Raising awareness arm

The raising awareness arm has two key elements to consider: greater awareness of the signs and symptoms of asthma in children and the strengths and limitations of the diagnostic pathway for asthma in children.

Principles behind using a participatory research approach with South Asian participants

The MRC guidance for designing and evaluating complex interventions advocates a staged approach involving end users in the design process, and suggests that interventions that are tailored to the needs of minority ethnic groups are more likely to be successful. 60 The MIA study aimed to address both issues: tailoring for the needs of the South Asian community and also developing a participatory staged approach that could be translated to other communities and other clinical areas. The MIA team made a positive decision to test the approach on two groups considered to be ‘hard to reach’: minority ethnic groups and young children.

Despite the existence of ethnic variations in health and disease,25 minority ethnic groups are under-represented in medical research. 126 This is ethically questionable,180 introduces bias181 and limits generalisability by overlooking the influence of potential genetic predisposition, diet and environmental factors on responses to disease and medication. 87,126,182 Varying explanations for the under-recruitment of minority ethnic groups have been suggested, including investigator bias,183 misunderstandings regarding the aims of research among potential participants,183,184 the use of universal methods for recruitment, informed consent and data collection rather than those tailored to the community,134,136,185–188 language barriers with associated time and cost implications,86,91,183 the need to use CFs/lay researchers131 and additional efforts being required for the dissemination of results to participants and communities. 87 With an aim to overcome some of these perceived barriers, the MIA study adopted a participatory research approach utilising culturally sensitive methods such as working with CFs, using audio consent and identifying venues acceptable to the communities concerned (see Chapter 2). This approach enabled the researchers to take a broader perspective; not focusing solely on NHS-led strategies for asthma management, but accommodating a wide range of attitudes, beliefs and experiences with regard to asthma, and recognising the priorities of service users. The project was intended to provide a ‘proof of concept’ testing to establish the principle for tailoring interventions for use with South Asian communities.

Successes and challenges in using a participatory approach

Taking a participatory approach, and following IM methods, was extremely resource intensive, both financially but also in terms of staff time and staff engagement.

A challenge when using participatory research is that the scope of the project can grow, as it is not apparent from the outset what the needs and agendas of the participants might be. Given the volume of data generated in the study, it was not feasible to develop an entire intervention, but rather in developing this plan and demonstrating a methodology for development of a tailored intervention programme, we have laid the foundation and provided the data for intervention development addressing remaining themes within the plan to take place in the future.

Recruitment of South Asian participants

One of the key challenges in the MIA project was to successfully engage South Asian families and community members in the research. Despite exceeding recruitment targets throughout, the resources, energy and time required to sustain recruitment and retention of participants over the study period were significant. The study team had prior experience of working with CFs and recognised their value in supporting access to identified communities. CFs were, therefore, central to the success of the recruitment and retention of participants within the study. The snowball sampling method of recruitment adopted for the MIA study can lead to the positive selection of a limited subsection of society. It has many benefits, however, including enabling access to groups otherwise reluctant to engage with any forms of social or health research.

Research participation is known to be influenced by the manner and context in which participants are approached, as well as the role and position of the person recruiting them. 189,190 The CFs were selected from the participants’ ethnoreligious communities and it is assumed that they were more aware of cultural sensitivities and needs of participants. As a result, this increases the level of trust between participants and the university-based research team. The CFs also played a key role in assisting the academic team to interpret the qualitative data in a culturally sensitive way during the analysis phases of the project. The project followed an iterative process, with constant referral back to CFs and community members, supporting validation of the process and interpretation of the data and enabling them to guide the direction of the project. The success of these strategies suggests that the term ‘hard to reach’ needs to be reconsidered as a descriptor for minority ethnic communities. Successful engagement was determined by advice from the CFs and parent representatives involved in the study. Reflection, revalidation and endorsement of findings from the workshops reinforced the successful manner in which participants were engaged within the study. Parent representatives on the project steering group also assured the research team that the MIA project had explored different ethnic groups in a more thorough and comprehensive manner than other research projects they had been involved in. As the CFs had previously been involved in other research projects, they were able to comment on the new methods for recruitment and engagement used in the MIA project. Despite successful engagement methods, the challenges encountered must not be underestimated. Recruiting and training CFs is time-consuming.

Identification and recruitment of the CFs in the MIA study was eased by the fact that several had worked with members of the research team on previous community-based projects and, thus, were experienced in interviews and focus group facilitation. As a consequence, only minimal refresher training on issues such as consent and research ethics was required. This prior experience reduced the financial costs and time related to recruitment and training. Additional facilitators were needed to meet the specific language and cultural needs of MIA participants; however, this required further expenditure on training which was often outside normal working hours. In addition to being skilled, it is also important that CFs ensure that they have a good understanding of the particular topic they are involved in researching. The CFs in the MIA study were thus paid to attend a special briefing sessions on issues relating to asthma and its management in children. The cost of training community-based researchers in research methods and costs associated with the need to familiarise them with the context and content of the study need to be recognised and included in any research funding application.

One limitation of having the CFs centrally involved in recruitment to the community study and to the workshops was that they predominantly approached families or other community members drawn from an established group of contacts. This may have limited the demographic profile of available participants and, as a consequence, the research team regularly reviewed demographic data to try to overcome this possible limitation. Additionally, the repeated use of the same CFs, who drew on the same communities or contacts, may eventually result in ‘research fatigue’. Research fatigue, when individuals and groups become tired of engaging with research, can be found in all forms of research. 191 It can be particularly problematic in qualitative and participatory research, where a high degree of active personal involvement, constant thought and consideration and long-term involvement are required by participants. 191 Research fatigue manifests in a reluctance to engage further with existing research or a reluctance to engage with new research, and typically occurs in two contexts: projects that require participation over time192 and research groups where requests for participation are common, such as limited or ‘hard-to-reach’ populations. 193,194 Both contexts were relevant to the MIA project. Research fatigue was minimised by providing feedback on the outcomes of the research. This enabled participants to perceive the benefits of their involvement by clearly delineating expectations and requirements at initial engagement191 and included consideration of school and religious holidays. Awareness of research fatigue led to a request by the research team to extend the timeline for the study to reduce the intensity of the commitment requested from participants. Future participatory research studies may wish to consider ‘slowing the study’ to account for the ‘research fatigue’ described here and thereby enhance the retention of participants throughout the study period.

An additional successful, easily transferable strategy for including diverse perspectives was the inclusion of parents as members of both the research team and the advisory group. The parent research team member (and grant co-applicant) was present at each research meeting, allowing for direct and immediate feedback on research methods and data interpretation. The parent representative on the advisory group provided a second individual who was removed from the day-to-day running of the project, but continued to provide a valuable role in presenting a parental perspective to the overall management of the project in addition to contributing to design of interview schedules and data interpretation. Both parent advisors were also key players in the recruitment of participants.

Utilising workshops to facilitate community and parental engagement

Three participatory workshops were held in phase 4 of the study to prioritise key themes from earlier data and to review the proposed intervention (see Chapter 5). The benefits of participatory workshops are that they can provide participants with opportunities to engender shared ownership of research data in addition to opportunities to meet others, share perspectives and test ideas in a non-judgemental and informal forum. 195 During the MIA workshops, participants (including children) worked in partnership with the research team in setting priorities, determining the ongoing direction of the research and tailoring the intervention programme. However, it is also important to recognise the limitations of this process. One key issue involved the difficulty in achieving a balance between the depth and breadth of information presented. Furthermore, the participatory nature of MIA resulted in a diverse set of participants at the workshops with variable knowledge and experience of asthma, and diverse language needs. The finalisation workshop included children and adults working together, which also brought further diversity into play. This required intense preparation to ensure that all participants could access and understand the information being presented and to keep all participants effectively engaged. This planning and preparation required a significant investment of time for the research team and this needs to be fully recognised and costed in research funding bids.

Language differences within the workshops were addressed by having each CF provide simultaneous translation, with breaks to allow for differences in the speed of translation. In addition to providing direct translation, the CFs were able to provide context to the discussion for the participants. While largely successful in facilitating the use of five different languages during the workshops, this approach also has drawbacks as simultaneous translation can be disruptive for participants. 196 The investment of time and effort on the part of many MIA participants was significant as many were involved in both interviews and workshops. This was minimised by carrying out interviews in participants’ homes and workshops in venues local to the respective communities. These venues were accessible by public transport, with taxis made available for those with specific needs. Workshops were held either at weekends or in the evenings at times judged to be suitable to most participants. While convenient for community participants, this had likely reduced the level of engagement of HCPs. This highlighted an important dilemma in accommodating competing needs. Low-value vouchers for local shops were provided for workshop participants to thank them for their participation, and an on-site crèche was for provided for those who needed to bring along children not directly involved in the study. Additional considerations included providing refreshments (including full meals) for the participants and accommodating diverse dietary requirements. These practical and logistical challenges were minimised by working with established, community-run ‘South Asian’ centres and similar venues, many of which had expertise in catering for their local communities.

Collaborating with healthcare professionals

Engagement with HCPs was considered to be a crucial element in the study. A range of HCPs were invited to be members of the advisory board and take part as participants in phases 3 and 4. They were selected not only for their knowledge related to asthma but also for their experience in commissioning or providing local services. Access to HCPs for focus groups and individual interviews was facilitated by the PCRN and CLRN. HCP participants included frontline clinical staff in addition to service managers and commissioners. It was hoped that, in this way, further insight into the organisational and aspects of asthma could be gained. However, engaging and retaining HCP involvement in the study was often challenging. Attendance at workshops and at advisory group meetings proved particularly difficult for HCPs, despite the offer of financial reimbursement to employers to support their release from primary activities. Holding workshops at weekends and in the evenings was preferred by the family and community participants, but presented a barrier to the participation of healthcare providers. HCP engagement in the study was also negatively impacted by the concurrent reorganisation and reconfiguration of services being undertaken during the course of the study. This meant that not only did personnel in key positions change through the duration of the study, but also participation in research generally appeared to be a reduced priority, especially for those participants faced with uncertainty about their employment or those taking on significantly revised roles. Membership on the advisory team was also difficult to sustain. Changes within organisations meant that staff turnover was frequent, leading to individuals on the advisory panel leaving to take up positions elsewhere. This state of flux within the NHS thus had an impact on the conduct of research, requiring additional time and energy from the research team to attempt to recruit and sustain involvement of HCPs. While recruitment to interviews was eventually successfully achieved, with some HCPs attending community-based workshops, the research team decided to use electronic ‘workshops’ for HCPs, which were of value, but perhaps not as successful as engaging people in direct group interaction. In this study, therefore, the HCPs were found to be ‘harder’ to reach than the South Asian community.

Critical reflection on children’s involvement in the Management and Interventions for Asthma project

Research collaboration with children is encouraged and has been embedded in national policy. 2 However, the evidence supporting involvement generally and collaboration specifically is limited. This gives the impression that the drive towards collaboration is based on the assumption that collaboration is best practice, rather than on evidence of its effectiveness. 197 The MRC guidance for designing and evaluating complex interventions60 proposes involving end users in the design process and, clearly, within the context of this project, such users are children as well as parents. Collaborating with children requires additional time commitments by trained personnel and provision of child-friendly resources. As a consequence, this has a cost implication.

There are several reported benefits to collaborating with children. These include identifying different perspectives on research topics and methods; improving the suitability of research tools for use with other children; improving the quality and depth of interview data by enabling other children to be more relaxed and open; improving the dissemination and uptake of research by enabling target children to identify with a child of a similar age and characteristics; enhancing adults’ perceptions of children’s knowledge and value in research; increasing children’s self-confidence and self-esteem; and teaching children valuable skills. 110,198–200 The MIA study obtained informed consent and enrolled children into the study as interviewees in phase 3, but also directly engaged the children in prioritisation and intervention development through their active participation in the phase 4 workshops. It is important, therefore, to reflect on the strengths and challenges of this approach.

Interviews with young children

All children in the MIA study were of primary school age (aged 5–12 years). They were invited to be interviewed either with their parents or separately. Review of the interview transcripts and reflection by the study team has highlighted some of the challenges encountered when interviewing children at this young age, including limited depth of data. While qualitative experts have laid down internationally accepted standards for conducting good quality qualitative interviews,201–203 such as building rapport between the interviewer and interviewee, the use of open-ended questions and consideration of the location and space for the interview to optimise comfort and focus, a lack of specific guidance when conducting interviews with the 5- to 12-year-old age group has been noted. 204 Research has demonstrated that very young children can provide important information and insights regarding their health experiences. However, there has been relatively little research into the practicalities of applying standard qualitative techniques to young children. 205

Building rapport with children during the interviews for this study was at times challenging. To overcome this, several techniques were used; the use of first names only (thereby avoiding identifying the interviewer as a researcher or a medical doctor), asking the parents to be present at the beginning of the interview (or throughout if preferred) and the use of activities such as drawing, writing or games to engage the children. However, each of these techniques created additional challenges. Parents frequently introduced the interviewer to the child, for example ‘a doctor who wants to ask you questions about your asthma’, thus setting the tone of the interview. Additionally, parents invited to join the interview at the beginning found it difficult to then leave the interview, which changed the dynamics of the interview from a child-only interview to a family interview. Further problems included children not wishing to participate in the activities provided, such as drawing, and the activities themselves increasing the length of time required for the interviews, which placed additional burden on the child and interviewer.

Open-ended questions are recommended in qualitative research but are more difficult to adopt when interviewing young children. In this study, children struggled with answering hypothetical questions and responded more easily to closed questions, which limited the depth of the interviews. This experience was in line with Irwin and Johnson205 and Wilson and Powell206 who reported that closed questions were less taxing on a child’s linguistic and reasoning skills and less daunting. Considering the use of peer researchers or of alternative participatory methods of data collection such as games, especially with the younger children, may have been more effective methods of eliciting accounts of their experiences.

The timing and locations of the interviews were further relevant considerations. Interview dates, times and locations for the MIA study were all selected by the parents. Accessing children after school was more practical but meant that, as a result, some of the children were tired at the time of interview. Parental choice of time and venue may also not be one that is preferable to the child, demonstrating that in trying to overcome as many barriers as possible to increase recruitment of children by engaging with parents, the child’s choice of interview style may be overlooked. In addition, the length of question schedules should be adjusted to accommodate the additional time required to engage in any ‘creative’ or ‘relaxing’ activities and consideration should be given to whether or not multiple meetings may be required to enable a child to develop familiarity with the interviewer.

Workshops with children

The children participated in two styles of workshops: prioritisation workshops and finalisation workshops. Evidence suggests that to work effectively with children, the research methods used need to engage children’s interests174 and take into account variations in age, understanding and ability. There was greater scope to adapt methods to suit children within the workshops than in the interviews. It was possible to offer multiple methods of engagement within one event and, as a result, children were able to work together as a group. More discussion and visual/physical-based methods were adopted in place of the presentational and written methods used with adults.

Summary and discussion of key findings

One of the objectives of the MIA study was to use a participatory model of research with the South Asian community. The collaborative approach utilised in the study was successful in reaching its recruitment target and retaining participants throughout the project, despite the challenges faced. This illustrates that the South Asian community, including children, are not ‘hard to reach’ if appropriate techniques are adopted. The finalisation workshops brought together the South Asian and White British participants in order to help identify generic and specific components for the intervention programme. Bringing both groups together demonstrated a shared goal and helped to validate the findings. Participants were valuable partners in the decisions made throughout the process and were integral to shaping the final ‘ACT on Asthma’ intervention programme.

The community study: perceptions of childhood asthma in South Asian communities

Phase 2 of the MIA study aimed to address lay perceptions of asthma and the impact of cultural, religious and wider socioenvironmental influences and to form a holistic picture of the context of childhood asthma in South Asian communities.

This phase, often not included in similar studies, has time and financial implications and may require culturally sensitive research methods to be utilised (see Chapter 3). The additional benefit of including this phase in the study, therefore, needs to be justified. As demonstrated by the socio-ecological model, patients do not live in isolation but rather within the context of their family and the community all having an influence on behaviour. Understanding these influences can, therefore, enhance the effectiveness of an intervention and also provide evidence that health programmes need to target the wider community as well as that of the individual patient or family.

The focus group discussions with community members suggest that, in many cases, lay understandings of asthma contrast with medical perceptions of cases, triggers, symptoms, treatment and outcomes, suggesting a need for better public information about asthma within these communities. Key findings in this phase were the variations in the meaning and use of the words ‘asthma’ and ‘wheeze’, particularly where language barriers were also present, beliefs about the heritability of asthma, understanding of asthma as episodic rather than chronic, concerns about asthma as a contagious condition, concerns about the negative side effects of asthma medication, the presence of stigma related to an asthma diagnosis, and strong beliefs regarding the benefits of alternative remedies and treatments including dietary modification. These perceptions of asthma and its impact can affect parental expectations and management, as well as families or individuals’ relationships and interactions with their community. Data suggested that fear or embarrassment that one’s child is unwell, potentially due to reactions from community members, may be preventing parents from seeking help and managing their child’s asthma effectively. Findings from phase 3 (see Chapter 4) further confirmed the continued influence of community norms and attitudes and, thus, the importance of including community members in intervention development when working with South Asian communities. These influences were recognised by the children and families, and led to one of the arms of the exemplar intervention programme (‘ACT on Asthma’; see Chapter 5) focusing on raising awareness of asthma within the South Asian community. At the same time, community members identified a range of issues relating to access to healthcare provision and the quality of care such as poor provision and lack of organisation of care within the NHS. These deficiencies in health care must also be addressed if true improvements are to be seen.

The management of childhood asthma: the perceptions of families and healthcare professionals

In phase 3, children, parents/carers and HCPs were interviewed to identify key factors relating to optimal asthma management. The inclusion of the White British group in this phase enabled the research team to identify which interventions were amenable to a universal approach, and which required tailoring to specific communities. Many of the problems facing families of a child with asthma were common to all communities: lack of understanding and knowledge about the origins or triggers of asthma, poorly communicated information, a lack of a written asthma plan, inconsistent care between HCPs, and dissatisfaction with the health service. However, some issues, such as barriers relating to information provision, were present in both groups but were exacerbated for South Asian families because of language barriers or translation issues and due to limited provision of information. Issues particularly relevant to South Asian families included the use of complementary therapies or adjusting diet to manage their child’s asthma. South Asian families were more likely to use the emergency services if they could not access their GP. The findings indicate one of the reasons for this was difficulty in recognising the severity of symptoms, resulting in delayed access to treatment.

As we have seen, families prioritised the category of ‘getting a diagnosis’ for asthma as an important area of intervention. This category encompasses issues for both families and healthcare providers. Interview and focus group data identified that many parents waited several years after the onset of symptoms or, in some cases, treatment, before a clear diagnosis was given to them. Diagnosis was dependent on parental recognition of problematic symptoms and knowledge of what is ‘normal’ for children and, for a minority of parents, a desire to avoid the stigma of illness (factors at the individual/family/community level). Prior to diagnosis, many families were unaware of asthma as a possible explanation for children’s symptoms or misattributed the symptoms to other conditions. Timely diagnosis, however, was also related to the knowledge and practices of HCPs with whom parents and children came into contact and the way in which services were provided (factors at the organisational/environmental level).

Families perceived long delays in receiving a clear diagnosis of asthma from health professionals, which they felt impacted on the treatment received, the information and support given and the importance that they attached to asthma management. They also reported variable knowledge of asthma among GPs, hospital doctors, nurses and teachers and that the content of advice and information given to them, including around diagnosis, varied between professionals and individuals. Inconsistent, and what parents sometimes perceived as contradictory, advice added to their confusion about correct management, reduced their confidence in the NHS and, in some cases, affected the seriousness with which asthma was taken. HCPs often had a different perception of the need for objective tests for asthma but also reported that where additional testing or patient education was desired they were often unable to access services due to unclear referral pathways.

Children (White British and South Asian) expressed similar perceptions of asthma to those of their parents, including beliefs about the contagious nature of asthma, mixing up causes and triggers of asthma and not understanding what a diagnosis of asthma meant. Children also described a fear of an acute attack. These data are consistent with previous research findings166,207,208 and highlight the lack of effective education-based interventions or their effective implementation. Compared with the adults, children were more focused on acute attacks. Confirming previous research,164,165 both White British and South Asian children described experiencing strong emotions during acute attacks and often felt scared or upset. Other feelings described included embarrassment or feelings of not being ‘normal’.

Healthcare providers also identified several issues that led to poor asthma management for children. These included barriers that occurred during consultations with South Asian families such as time and communication issues as a result of language barriers, perceptions of barriers to asthma management for South Asian families and professional and organisational barriers to asthma management. HCPs acknowledged that their focus was often on addressing medication requirements for treating asthma and indicated that they gave less attention to more holistic approaches to asthma management. HCPs also acknowledged that services were often not structured in a way that would enable them to meet the needs of South Asian families adequately, especially in relation to having the time to give more information and to adequately address the additional communication support needs which some families required. Professionals were also aware that parents faced difficult decisions about accessing care during acute episodes. Parents often used the ED because GP surgeries were closed, or because they were not confident that GPs were equipped to handle acutely unwell children, in terms of equipment or knowledge. Parental knowledge of alternatives to ED presentation was limited. These environmental factors were thus clearly identified by both parents and professionals as major barriers to optimum management. Many of the professionals interviewed were aware that parents received variable information about asthma. Both professionals and parents specifically requested a more co-ordinated approach across primary, secondary and tertiary care that would encompass children with diagnosed asthma, but also those with possible asthma or those using an inhaler, so that these families could access information and education in a timely manner. Both parents and professionals felt that there was an important role for schools in disseminating information about asthma as well as in helping parents and children living with asthma.

Identifying barriers and facilitators to optimal management is important; however, MIA has been able to provide further insight into some of the factors underpinning these barriers and, just as importantly, provided further evidence on levers that could be used to bring about change. Organisational discrimination such as the existence of ‘cultural stereotypes’ (i.e. viewing South Asian families as ‘difficult clients’) was also apparent. 38 If change is to be successful, organisational barriers and culture within the NHS need to be addressed in combination with the health beliefs and attitudes of families and communities.

The development of a collaborative intervention

The integration of the primary qualitative data collected in phases 2 and 3 led to the identification of 11 key themes: 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 child’s asthma; types of services available for asthma; quality of care; understanding of asthma; and day-to-day management. These themes were needs led, addressed the whole pathway of the child and would each need to be addressed by an integrated intervention programme delivered by an integrated system to comprehensively address optimal asthma management for South Asian children. However, recognising resource constraints within the NHS and wider society, it is unrealistic to expect such a comprehensive programme to be implemented simultaneously, and so participants were asked to identify one priority theme for which an intervention programme could be developed which would be acceptable to families and HCPs for implementation.

From the 11 key themes identified, the South Asian families in this study prioritised ‘getting a diagnosis’, whereas the HCPs located this much lower down their order of priorities (see Tables 17–19). There was a further discrepancy noted when analysing the children’s data, with children prioritising acute asthma attacks. This discrepancy and perception in what matters to the family or child compared with what is important to the HCP supports the current view that patients should have greater control and power in their health care and decision-making. 71

Data from phases 2 and 3 (see Chapters 3 and 4) revealed that diagnosis of asthma underpinned all aspects of condition management, including access to asthma services, information and education, and knowledge of acute asthma attacks. By intervening in the diagnostic process, the educational aspects and knowledge of how to approach an acute asthma attack could also be incorporated into an intervention, thereby incorporating children’s voices. This led to the decision to use ‘getting a diagnosis’ as the exemplar for the current study. As we have seen, an intervention designed around this issue encompasses change in knowledge and behaviour for communities and families, change in the behaviour of healthcare providers and change in the organisation of asthma services.

A further important theme identified by both White British and South Asian parents was ‘what to do day to day’. However, despite both groups of families wishing to address what they could do ‘day to day’ (other than medication), South Asian families were more focused on home adaptations, diets and other complementary strategies, demonstrating an area where culturally specific tailoring could be beneficial. Despite national recommendations being available for HCPs on providing all children with information and written asthma plans,4 ‘lack of information’ was a frequently cited issue during both sets of interviews, leading to ‘having suitable information on asthma’ being a further priority theme recognised as requiring an intervention, not only for South Asian but also for White British families. This lack of provision of information needs to be considered by all HCPs; however, it was clear from the study that providing more information without checking for understanding would be insufficient. In addition, it was suggested that tailored information which addressed questions or concerns more commonly raised by South Asian families was more likely to be effective than totally generic information.

We have presented only a selection of the themes from the MIA study to demonstrate the disparity and divergent views held by the children, their families and the HCPs. These disparities provide potent targets for interventions and, consequently, demonstrate a need for a collaborative approach which will thereby prevent the development of interventions that are driven by the perceptions of healthcare providers and which fail to take into account issues of importance to parents and children living with asthma.

To develop the exemplar intervention programme for ‘getting a diagnosis’, the data from phases 2 and 3 were used in a modified intervention framework to identify multiple actors, behaviours and determinants that contribute to barriers to effective management. Through using methods drawn from IM (see Chapter 1), performance objectives were developed informally by salient theories from clinical and health psychology and were linked to practical, feasible strategies for behaviour change, which were also theoretically embedded. The multifaceted final ‘ACT on Asthma’ diagnostic programme consisted of four integrated arms, each of which represents an intervention strategy. The four arms represented a need for community awareness, education and training, clinical support and the provision of an advice centre, of which all would be centrally co-ordinated. Development of the tailored, multifaceted ‘ACT on Asthma’ diagnostic programme was one of the main outputs of the study. Integrated programmes for the management of asthma do exist but most have been developed in the USA or Australia. Culturally tailored programmes are less commonly available, with the MIA team unaware of any programmes for South Asian children that have been developed and implemented in the UK.

In summary

Phases 2 and 3 provided evidence from multiple perspectives influencing the overarching asthma intervention planning framework leading to the ‘ACT on Asthma’ programme developed in phase 4 and supporting the collaborative approach adopted by MIA. The diverse understandings and priorities of families and HCPs which emerged in the course of the study (see Chapter 4) support the need to engage children and their families and not rely solely on the perspectives of healthcare providers. The study illustrates the need for interventions to be integrated, developed and delivered at the patient, provider and system levels if they are to be effective.

Recommendations for healthcare practice

The MIA project was a large, complex study raising many questions regarding asthma management, intervention design and collaboration with communities considered to be ‘hard to reach‘. Each chapter has discussed in detail the findings from each phase of the study. In this concluding section, we will present some key recommendations for consideration by practitioners, policy makers and researchers.

Marginalised communities have greater healthcare needs and inequality in health outcomes. Redressing this is central to many governments’ health policies. Patient and public involvement in health research is widely promoted, yet for minority ethnic communities there is a gap between rhetoric and reality: minority ethnic communities are viewed as hard to reach and, as a consequence, are under-represented in research and its translation into health service improvements. A similar picture exists with regard to children. Health outcomes within the UK, particularly for children, have been shown to be lagging behind those in other European countries. 14 This led to the launch of the Children’s and Young People Health Outcome Strategy in January 2012 and the publication of the Children’s Outcome Forum Report,2,3 which set out key recommendations to bring about change and improve health outcomes for children in the UK. Recommendations relevant to this report included the need for the wider health system to tackle inequalities in health, and for children, young people and their families to be more involved in decision-making and the development of interventions and services to meet their needs. The report2 recommended that organisations and those delivering care on the front line should not only listen to the voices of children, young people and their families but also set out and demonstrate ways in which they will do this. At the same time, it is increasingly being recognised that the health and social care delivery system has not led to improvements in health outcomes209 and that a much ‘bolder’ approach is required. An integrated system approach is being advocated to prevent individual organisations such as health, education and social care from delivering interventions in isolation. With this in mind, it will be necessary for feasible evidence-based services to be locally commissioned that can be implemented within this new NHS structure and that are tailored to the needs of their local community.

This study provides a template and an evidence-based methodology that can be followed by commissioners and providers of health and social care, who will need to engage with their local communities to develop innovative solutions to improve outcomes for a wide variety of problems, ranging from public health to non-communicable diseases. The model presented here provides not only a way forward for engaging with children and families (often not included in such activities) but also for engaging with the diverse communities for whom inequalities in health are evident. The study demonstrates how, within a new integrated system, evidence-based, needs-led interventions can be developed. Local detailed studies will, however, always be required to establish the local levels of acculturation, mixture and inherited tradition arising from localised outcomes of the patterns of migration. Policy makers may wish to consider and ensure methods are in place to engage with consumers to effectively shift the balance from interventions being driven by providers to more interventions being consumer led and ensuring that they are tailored to their needs.

Asthma is one of the most common chronic conditions of childhood and provides an example for the inequalities in outcomes mentioned above. The evidence suggests that the UK health services provides inferior care compared with services in Europe,14 despite the existence of national guidelines4 and National Institute for Health and Care Excellence (NICE) quality standards. Variation in outcomes exists210 with guidelines not consistently implemented. Outcomes for minority ethnic children, such as South Asian children, are recognised to be worse than those for the majority population, with the BTS asthma guidelines4 recommending ‘heightened awareness to the needs of asthma in vulnerable groups’ (p. 21) such as minority ethnic groups.

A new health inequalities duty created from the 2012 Health and Social Care Act has the duty to ‘have regard to the need to reduce inequalities between people of England with respect to the benefits that they can obtain from the health service’. To achieve this goal, services need to be planned and delivered to ensure that they reach the individuals who need them most, but equally to ensure a focus on whole pathways of care, building or strengthening of partnerships and evidence to lever the change. The MIA study provides the underlying evidence that will help to lever change across the asthma pathway. The findings from the study not only support previous research reporting on the barriers to asthma management in South Asian children but provide a deeper understanding of the factors underlying these barriers, with a tailored approach required to overcome them. Many factors identified by the study were generic and should be applied by practitioners to all children with asthma.

We recommend that greater effort be made to provide appropriate and timely education on asthma and its management to families, and to check the understanding of the information provided. This was rarely achieved among our study participants. In line with national guidelines, parents should be provided with an asthma plan in a format that is accessible and appropriate. Organisations such as the Academic Health Science Networks may be able to assist with supporting and measuring such activities. The role of the wider family in managing asthma also needs to be recognised and HCPs may wish to reconsider the traditional parent/child consultation and develop a more inclusive approach where appropriate.

As recommended by the BTS guidelines, a culturally sensitive holistic approach to management is required when addressing minority ethnic children. Public health policies have not traditionally considered asthma as a priority area for interventions. However, the South Asian community had less pre-existing knowledge of asthma, although children and families are known to be influenced by the communities in which they live. The MIA study findings suggest a key role for Public Health policy in addressing broader social perceptions of asthma and its management in families.

Communication barriers and lack of consistent information, for a variety of reasons, were identified by HCPs, parents/carers and communities in the MIA study. Effective management of childhood asthma is underpinned by effective communication. Further work is needed to address the problems created by a lack of communication support and the need for increased time for consultations with families who have a lower proficiency in English. Health providers need to consider innovative ways of communicating with children and families if improved outcomes are to be achieved. Information provided to children and families also need to be tailored, with South Asian families potentially wishing to address different issues from the majority population.

The cultural competence of the NHS workforce has been questioned in many research reports. The MIA study also demonstrates that further effort is needed in this area if organisational discrimination is to be overcome.

The procedures used in the MIA project can be adapted using the principles described, and applied in other settings with other South Asian and other culturally distinctive groups, with due attention to such local issues as the mix of ethnicity, language, religion and history. In particular, attention should be given to access to schooling, dietary preferences and family structure. Where ‘complete’ families have migrated, dynamics may differ from those places where family relationships are more fractured or conducted at a distance within the diaspora.

Recommendations for future research

The extensive remit of the MIA study has highlighted a number of gaps in current evidence, not only in respect of methodological approaches to collaborating with consumers of health care and intervention design in South Asian communities but which can be applied to other ethnic minority and White British communities. The MIA study focused on childhood asthma but consideration should also be given to other chronic illness pathways where management is suboptimal and which could be addressed by a similar process. The 11 key themes presented in the MIA study represent key points along the asthma pathway where research could be focused. Some additional examples of further research are suggested below.

• The MIA project has highlighted how taking a collaborative multifaceted approach to intervention development can be a successful method of intervention development, but future research needs to explore the feasibility, practicality and success of such interventions. The four armed integrated multifaceted ‘ACT on Asthma’ intervention programme whose aim is to improve ‘getting a diagnosis’ by addressing community awareness, education and training, clinical support and the provision of an advice centre, each underpinned by tailored strategies and centrally co-ordinated, now needs to be tested for its feasibility and effectiveness.

• The need to involve the wider family in asthma management and the most appropriate mechanisms for achieving this in diverse communities should be explored further. Studies should identify effective means of engaging the wider family and test the effectiveness of this strategy in reducing exacerbations, reducing hospital admissions and improving quality of life.

• Community knowledge of asthma was found to be limited. Further research could explore the value and effectiveness of techniques such as social marketing to enhance public understanding of asthma in South Asian communities.

• This study identified several challenges in involving children in participatory research and intervention design. If we wish children to be more involved in decision-making and we wish to ‘give children a voice’, then we need further methodological studies to guide the development of effective ways to fully collaborate with children in redesigning services.

• Children prioritised fear of acute attacks as a theme they would like further attention being given to. Research with children to identify ways of improving understanding and the management of acute attacks but also the emotions related to them should be a priority for further work.

• Little evidence is available to help inform parents whether dietary modification is effective in asthma management. Further research is required to investigate this issue and also the effectiveness of a range of complementary therapies that are commonly adopted by families.

• Organisational discrimination requires further attention from researchers. Ethnographic research involving direct observation and event questioning as they unfold is likely to be needed to compare and contrast clinical management and expectations in children of different ethnic backgrounds.

• The MIA study has demonstrated that, despite the existence of BTS guidelines, there are significant organisational barriers to effective management of childhood asthma. Further research is clearly needed to explore the barriers to the implementation of such guidelines and how system changes to improve the co-ordination and delivery of asthma services can be integrated into the new commissioning models of the NHS.

Consent procedure

At the point of approach, potential participants were asked to provide some basic demographic information, which included the participant’s preferred choice of language (see EoI form). Study materials were then provided, either in English written format or in translated audio format. Where study materials have been provided in English written format, consent was taken in English in written format unless a participant who has received English study materials did not have sufficient literacy skills to read the consent form, in which case verbal audio-recorded consent was used. Where study materials were provided in translated audio format, consent was taken in the appropriate language following this process:

1. At initial approach, individuals were given or posted the patient information sheet and consent form in English and an audio recording of the patient information, or directed to the study website where information in minority ethnic languages was available.

2. At the follow-up telephone call, conducted in the appropriate language:

   1. – Any questions concerning the study material were answered.

   2. – Time/date/venue for focus group/interview were agreed.

3. Prior to the start of the focus group/interview, the researcher, aided by CFs, checked that the information had been read or audio recording had been listened to, and a further opportunity to ask and answer any questions was given.

4. The researcher, aided by community facilitators, explained how informed consent is taken as an audio recording and recorded.

5. The prospective participant was asked to state their name, the date and the time of giving their consent.

6. The consent form was read out by the CF in the relevant community language point by point and the participant asked to repeat the words and confirm that they understood and agreed with each point of the consent form. This process was recorded. If they wished, participants could also initial and sign the written consent form at the same time.

7. A copy of the audio-recorded consent was given to the participant to take away with them.

Assent from children

Article 12 of the United Nation Convention on the Rights of the Child recognises a child’s right to ‘form his or her own views; the right to express those views freely in all matters affecting the child; the views being given due weight in accordance with age and maturity’. Under UK law, the 1986 Gillick vs. West Norfolk and Wisbech Area Health Authority ruling determined that children under the age of 16 can give valid consent provided they are competent to understand the risks and benefits of the proposed therapy. 108 However, Gillick competency is rarely applied below the age of 10 years.

Informed assent, defined as ‘a child’s affirmative agreement to participate in research’,211 can and should be sought when involving children in research. The aim of the assent process is to listen to the opinion and wishes of the child, to promote and protect their dignity, privacy and confidentiality. 212 There is no agreed lower age limit at which assent should be sought, although age 7 is often taken as a cut-off for obtaining assent. 211 Children vary in their ability to understand and interpret information, and therefore to assent to participate in research. 108,211

In this study, the team sought assent from all children aged 7 years upwards. Children under the age of 7 years were judged by the research team as to their ability to provide assent, and where appropriate, assent was sought.

NHS ethical approval

The Integrated Research Application System (IRAS) application was completed and sent to the Derbyshire Research Ethics Committee (REC) on 26 October 2009 (ref. 09/H0401/85). The ethics committee met on 17 November 2009 (chairperson Phil Hopkinson). We received a request for further information and revisions to study documentation on 30 November 2009 and responded on 8 December 2009. We received the REC decision letter confirming favourable ethical opinion (conditional on permission or approval granted by each host organisation) on 10 December 2009.

University approval (project sponsor)

Copies of the REC and R&D forms were sent to the University of Leicester Research and Governance Officer, Mr Graham Hewitt, for approval as research sponsor. Project sponsorship was granted on 19 November 2009.

NHS research and development approval

On 2 July, IRAS R&D forms were submitted to University Hospitals Leicester (UHL) and Leicester City primary care trust (PCT).

There were significant delays to the project at this stage due to changes of key members of staff and reorganisation of R&D procedures. R&D forms, study documents and site-specific information forms were completed and submitted to each trust for review in December 2009. Approval was granted by Leicester City PCT on 15 March 2010. Approval was granted by UHL NHS Trust on 20 July 2010.

As a later addition to the study, R&D approval was also sought from NHS Leicestershire County and Rutland (LCR). Approval was granted on 12 April 2011.

Honorary contracts/research passports/letters of confidentiality

There was a lack of clarity as to the requirement for research passports, honorary contracts and letters of access, particularly in relation to the CFs. After discussion between the R&D offices and the University of Leicester, it was agreed that the CFs would be employed by the University of Leicester on a temporary contracted basis, which included a clause on confidentiality and data protection.

Consent and voluntary participation

All participants were provided with accessible study information and asked for their informed consent/assent, using either written or verbal methods. All participants were informed that their consent was voluntary.

Data protection and confidentiality

All study staff endeavoured to protect the rights of the study’s participants to privacy and adhered to the Data Protection Act 1998. We collected only the minimum required information for the purposes of the study. Study data, including signed consent forms and recordings, are held securely in a locked cabinet. Access to the information was limited to the study staff and any relevant regulatory authorities. Computer-held data, including the study database, are held securely and password protected, with access further restricted by user identifiers and passwords.

All medical data revealed during-study activities were treated as confidential. A procedure for reporting a disclosure of any behaviour that could adversely affect a child’s health and well-being was in place during the study, although this was not required. This limitation to confidentiality was clearly stated on the study information forms.

Lone working

A large number of interviews and focus groups were attended solely by the research fellow, often in community centres or participants’ work/homes. The University of Leicester adheres to the Code of Practice for the Safety of Social Researchers.

Minimising distress

This was not an intervention study; however, in-depth interviews discussing health can be distressing. 102 Therefore, interviews were conducted in a professional and sensitive manner. Participants were reminded that they did not have to answer any questions that they considered too intrusive and interviews would be stopped at any time at the request of the parent or child. In addition, if the researcher felt that the child no longer wished to participate, even if no request to stop was made, the interview was ended. This was necessary at times during the study.

Separate child and adult workshops were planned, although in the same building at the same time. To ensure children’s well-being, if at any time a child became distressed during a workshop, they would be removed from the workshop and reunited with their parents or responsible adult. If a child became ill during a workshop, they would be reunited with their parents, and if necessary the emergency services would be contacted. These procedures were not necessary during the study.

Focus group question guide

Key informant topic guide

1. Could you tell me a little bit about your role in the community and what you do?

   1. Probe: How long have you been working in this or a similar role?

   2. What contact do you have with children/families?

2. In your experience, have you met or worked with any children with asthma or their families? Could you describe a typical child with asthma?

   1. Probe: What are the key features of asthma?

   2. Do you have any sense of the numbers of children with asthma in the community?

3. How do you think parents in your community might feel about their child having asthma?

   1. Probe: Might they be self-conscious/embarrassed/worried about their standing in the community?

4. What do you think that the average person in the community thinks about children with asthma?

   1. Probe: Would anyone treat the child or their family differently because they have asthma?

   2. Do you think that people in the community understand what it’s like to have a child with asthma?

   3. Do you think that people in the community understand what children with asthma can and can’t do?

5. Do you think that someone’s cultural background, being . . . has any effect on the way they think about asthma?

   1. Probe: What about what causes asthma?

   2. About treatments for asthma?

   3. About what’s normal/expectations for a child with asthma?

   4. In relation to how families are treated in the community?

6. Do you think that a person’s religion makes any difference to how they view asthma, or creates any problems?

7. Does being . . . have any impact on how the child is treated by others, including professionals?

8. Probe: Is there a perception of prejudice amongst doctors and nurses?

Research shows that sometimes parents find it very difficult to have a child with asthma.

1. What do you think might be some of the problems they face?

   1. Probe: Within the family

   2. Within the community

   3. With professionals – at diagnosis, getting treatments

2. As far as you know, what kinds of treatments are there for asthma?

   1. Probe: How are treatments viewed by the community?

   2. Problems with western medicines, especially steroids?

   3. What might stop someone from using their medicines?

   4. Use of alternative medicines?

A very important part of this research is identifying ways that we can help young children with asthma and their families.

1. What information or support, if any, should be offered to parents and children if diagnosed with asthma?

2. What do you think the NHS – doctors and nurses – could do differently that might help families in your community?

3. What do you think the community might be able to do that could help?

4. What could someone in your position do that might be useful?

5. What do you feel is the best way to involve people in the community in any of these suggestions? (Depending on answer . . .) Why would that work?

Question schedule for parents

Hello. Thank you very much for agreeing to speak to me. We’re going to talk about you and your son/daughter (say name) and their breathing. I’d like to talk about when things first started, then we’ll move on to what things are like now. I’ll also ask some questions about what happens when he/she has a bad day, and about any treatments you use.

Please feel free to say whatever you’re thinking and please remember that everything you say will be kept confidential. If at any time you’d like to stop or take a break, just let me know and we’ll do just that.

Let’s start by talking a little bit about your family. How many children do you have? Who lives in your house? Does anyone else help you to look after your son/daughter?

1. When did (child’s name)’s breathing problems first start?

   1. Initial symptoms/recognition

   2. Who/how diagnosed

   3. Information/support provided

   4. Barriers to diagnosis

      • Seeking help

      • HCP attitude

      • Access to service

2. People have lots of different ideas about why children get wheezy. Why do you think children get wheezy?

   1. Triggers vs. causes

   2. Heritability

   3. Contagion

   4. Gods will

   5. Diet

3. What do you think causes (child’s name)’s asthma/wheezing?

4. Could you describe what (child’s name)’s asthma is like on a day-to-day basis?

   1. Symptoms

   2. Impact on day-to-day life

      • Lifestyle restrictions

      • Time of work

      • Family life

      • Schooling

5. Who makes the decisions about day-to-day things?

   • Mum/dad

   • Child

   • Extended family

6. Could you describe a recent asthma attack? (substitute bad attack if little response)

   1. Describe management

      • Use of health services

      • Use of tests/diagnostics

      • Role of extended family in management

7. Problems faced

   • Recognition of need to seek help

   • Access to service A&E/walk in/GP

   • Practicalities – finances, time of day, weekends, childcare

   • HCP communication/attitudes/ethnicity/gender

8. What worked well?

   • Good service

   • Good person

9. Information provided

   • What

   • From who

   • Useful/not

   • What else wanted

   • Timing

10. Solutions used/wanted

11. Let’s talk about treatments. What do you hope treatments will do for (child’s name)’s asthma/wheezing?

    1. Personal goals of treatment

    2. Management vs. cure

    3. Concept of asthma control

    4. What is good control?

12. Does (child name) take any medicines for his/her asthma? (substitute inhalers if no response) (go through medicines one by one)

    1. When do you use this/how do you feel about it/any problems getting child to take it/how do you remember to take it/does everyone in family know about it/use in public

    2. For preventer medicines: when do you stop/who makes decisions/side effects

    3. Specific attitudes

       • Longterm med use

       • Inhaler vs. tablets

       • Steroids

13. Who has helped you learn about the wheezing/asthma?

    1. Sources of knowledge

    2. Skills

    3. Overseas advice

    4. Role of schools/community centres/religious centres

    5. Use of written management plans

14. What do the rest of your family think about (child’s name)’s asthma?

    1. Who knows/gets involved?

    2. What does child think?

    3. Does anyone offer advice/do you follow it?

    4. Impact on management?

15. What about your friends?

    1. Do you tell others/stigma?

    2. Would you tell about another illness/specific to asthma

    3. Would it be the same for an adult illness? Future marriage?

    4. Common beliefs about causes

    5. Common attitudes towards asthma/children with asthma

    6. Advice offered/follow it?

    7. Has anyone upset you?

    8. Do cultural attitudes influence management?

16. Where do you go for help about (child’s name)’s asthma?

    1. Usual source of care – GP/A&E/walk-in/family and friends/internet/religious leaders

       • Who do you go to?

       • What is the key issue – opening hours, location, relationship, gender, ethnicity

       • Problems faced getting help

         • Communication with HCPs

         • Getting prescriptions

17. What would help overcome these?

18. Is there anything that’s you’ve found particularly helpful in taking care of (child’s name)’s asthma?

    1. What/why?

    2. Alternative therapies used

       • What/why

       • Diet

       • Heating/furnishing changes

       • Barriers or facilitators to using different options

19. Is there anything else we could do to help you cope with (child’s name)’s asthma?

    1. What/Why/How

       • Specific to your family

       • General suggestions for families and children

         • Specific points for Indian/Pakistani/Bangladeshi families

Question schedule for healthcare professionals

Hello. Thank you very much for agreeing to speak to me.

The MIA research group are investigating the barriers and facilitators to asthma management in south Asian children with a view to developing an intervention programme that will be both practical and suitable. We’ll be discussing your experiences of managing asthma with south Asian children and families, in particular, any barriers you’ve faced and if, how or why these issues have affected your management. Towards the end I will ask about elements you’d like to see improved and how we might work together to achieve this.

1. Please tell me about your experience working with South Asian children and families with asthma

   • Diagnosis

     • Use of testing

     • Acceptance

     • Discussion/information given

2. Communication

   • Language

   • Attitudes

3. Particular problems encountered

4. Particularly helpful aspects

5. How much do you feel you know about the lives of south Asian families?

   • Confidence in knowledge

   • Confidence in achieving working relationships

   • Particular issues or helps around achieving working relationship with South Asian families

6. Is there anything you do differently for south Asian families?

   • Modification to communication style, information given, choice of treatments

   • Why?

7. What barriers do you think parents of south Asian children with asthma face in managing their children?

   • Practical barriers

   • SES/education/place of birth

   • Cultural factors

8. Do you feel that there are any organisational barriers affecting how you manage asthma in south Asian children?

   • Resources

   • Time

   • Training needs

   • Interpreters

9. What would you like to see made better?

Costs of training the trainers

C1. Cost of developing evidence-based and/or consensus-based advice: details of the Education and Training intervention proposal imply that the module must be evidenced based or, if such evidence does not exist, must be consensus based. Little indication is given as to whether the project team have collated information on this evidence already, or whether this still needs to be done. If research is required in order to inform this process (i.e. a literature review to obtain information on what is effective) then the costs of this need to be considered. The most sensible way of going about this might be to specify what issues a review might consider, and then conduct a competitive tendering process to establish what the minimum cost might be of providing the information required to inform the training module (by researchers competent enough to do the job).

C2. Cost of training educators: the proposal envisages that educators ‘will need to complete all the modules themselves first, then take part in a 2-day training course to learn how to deliver the modules’. Personnel capable of providing training will be required. It is unclear from the proposal what pay scale and grade of personnel might be required in order to provide such a 2-day training course for each person who requires training. There is also the requirement that ‘each educator will be required to attend a yearly update support session’ which will mean accommodation will be required as well as personnel to deliver such sessions. This implies that an ongoing unspecified annual cost will need to be borne for the provision of education to educators.

C3. Costs of accommodation: training sessions will need to be provided using some form of daytime accommodation. This might range from temporary use of a primary care trust office, which might be provided free of charge, to having to hire out conference facilities at a hotel. Hotel conference facility costs do vary considerably and will depend upon location and quality of provision sought. Such costs ought to be considered, if applicable. If delegates have to stay in hotels overnight, this cost also needs also to be taken into account.

C4. Costs of handouts: when people are being trained, they will require handouts; some assumptions have to be made about the costs of providing these.

C5. Costs of refreshments: while being trained on a 2-day course, people attending for training will require refreshments including coffee breaks, lunch and an evening meal.

C6. Transport costs: if training sessions are provided by centrally based staff who travel to different regional locations to provide training sessions, then those providing training might have higher travel costs than those in attendance. The travel costs of those providing training and those receiving training both need to be considered.

C7. Costs of hotel for overnight stays: as this is a 2-day course, the cost of an overnight stay in a hotel needs to be considered.

Costs of training the trainers (refresher courses)

C8. Costs of refresher training (staff time): a 1-day course will be required every 3 years to ensure that those providing training retain up-to-date skills; the cost of staff time involved providing this needs to be considered.

C9. Costs of accommodation: the 1-day refresher training sessions need to be accommodated, and the cost of this needs to be considered.

C10. Costs of handouts: when people are on refresher training, they require handouts; some assumptions have to be made about the costs of providing these.

C11. Costs of refreshments: while being trained on the 1-day course, people attending for training will require refreshments, including coffee breaks and lunch.

C12. Transport costs: if refresher training sessions are provided by centrally based staff who travel to different regional locations to provide training sessions, then those providing training might have higher travel costs than those in attendance. The travel costs of those providing training and those receiving training both need to be considered.

C13. Central administration costs for the intervention: inevitably, a training intervention will require central administration. The proposal envisages that ‘the central programme office . . . will support and monitor the delivery of modules by observing module delivery’ by providing ‘specific information and advice in response to questions asked by educators (or module participants)’. This all implies that costs are incurred; the level of these will depend upon the level of support and monitoring required (and the wage costs of the people providing it), and also upon the extent of advice required by educators. The average costs of this will probably also tend to drop as the intervention becomes increasingly widespread.

Cost of delivering the intervention to patients

C14. Cost of staff who deliver the intervention.

C15. Costs of accommodation: the proposal assumes that there are 7 evening sessions, and the cost of accommodation for each of these evening sessions needs to be considered.

C16. Costs of handouts: when people attend the evening training sessions, they require handouts; some assumptions have to be made about the costs of providing these.

C17. Costs of refreshments: while attending evening training sessions, will refreshments such as drinks need to be provided?

C18. Costs of certificates and resource packs: the details of the ‘education and training proposal’ suggest that they will be run as a complete course with attendance at all modules required to gain a certificate of completion or a resource pack. Therefore, the cost of printing certificates and producing a ‘resource pack’ for each completing delegate needs to be considered.

Involving children

Of the 29 interviewees who expressed an opinion about the value of involving children, all responded positively. Although the children responded briefly to most questions asked, all interviewees expressed the view that children should be involved and one felt that they had learned important lessons from their involvement in the project.

Yes, I think it helps, yes, because then you get their point of view as well and how they feel and what they want to get out of these types of group meetings as well.

Focus group