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Lakhanpaul M, Bird D, Culley L, et al. The use of a collaborative structured methodology for the development of a multifaceted intervention programme for the management of asthma (the MIA project), tailored to the needs of children and families of South Asian origin: a community-based, participatory study. Southampton (UK): NIHR Journals Library; 2014 Sep. (Health Services and Delivery Research, No. 2.28.)

Cover of The use of a collaborative structured methodology for the development of a multifaceted intervention programme for the management of asthma (the MIA project), tailored to the needs of children and families of South Asian origin: a community-based, participatory study

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

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Chapter 4The management of childhood asthma: the perceptions of families and healthcare professionals (phase 3)

Phase 3 of the study had two broad aims: to explore perceptions of asthma among South Asian families and a smaller, comparative group of White British families [protocol amendment approved by the National Institute for Health Research (NIHR)]; and to understand how HCPs perceive asthma and its management in South Asian children. A comparative White British sample was included in this phase of the study in order to identify whether or not the management of asthma was subject to variation between communities and to consider ways in which a generic intervention to improve asthma management could be usefully tailored to meet the needs of South Asian families. The socio-ecological model requires a consideration of the organisational context of service delivery. It was considered important to understand the perceptions of those delivering services to South Asian families about the current organisation of asthma care for families. Professionals from a range of disciplines were interviewed to ascertain their perceptions of asthma in South Asian children, their view of issues relating to its effective management and their suggestions for the intervention programme plan. As described in Chapter 1, the study adopted a qualitative methodology, using semistructured interviews with parents/carers, children and HCPs. This chapter discusses the process of data collection for this phase of the study and presents the key findings from the interviews with parents/carers and children, followed by key themes from the health professional interviews.

Interviews with families

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.

TABLE 4

TABLE 4

Inclusion and exclusion criteria for inclusion in phase 3 of the MIA project

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.

TABLE 5

TABLE 5

Recruitment avenues and numbers for the South Asian families in phase 3 of the MIA project

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).

TABLE 6

TABLE 6

Religions of South Asian parents and carers

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

Data collection

Interview schedules for parents/carers and children were developed with the assistance of the CFs from the systematic evidence synthesis and from data generated in phase 2 (see Appendix 4). Interviews covered the following topics: understandings of asthma; family and community perceptions of asthma; day-to-day management; medical management; interactions with healthcare providers; and the quality of healthcare services and provision. Children were also invited to write statements or draw pictures relating to their asthma; these were then used to prompt discussion during the interviews. The pictures and statements were not compulsory and the drawings were not formally analysed (see Appendix 8 for examples). Demographic information was collected, with families given the choice whether they wished to be interviewed together or as individuals. The team were particularly sensitive to the children’s needs; some children preferred to voice their views independently and separately from their parents, while others chose to remain in close proximity to their parents. Interviews took place at the families’ homes, were digitally recorded and transcribed, and were translated by the CFs where required.

Data analysis

All interview data were analysed using standard methods of thematic analysis (described in the following paragraph) to identify key themes and facilitate comparison between South Asian and White British groups. In addition, data from the interviews with South Asian families were further organised according to principles of intervention mapping. As with phase 2, interview data were subsequently transferred to charts to facilitate the intervention design process (phase 4), described in detail in Chapter 5.

The South Asian and White British family interviews were analysed according to the principles of interpretive thematic analysis and facilitated by the use of NVivo (QSR International, Warrington, UK).159 The analytic process for the family interviews began with coding of the South Asian data set using a process of open coding, followed by the development of emergent themes and the clustering of themes in an interpretive process. The basic codes were then elaborated into a framework of thematic categories within NVivo. All of the South Asian family interview transcripts were then coded using the resultant framework.

The White British interviews were subjected to an independent process of open coding by a second analyst in order to avoid undue influence from the existing South Asian coding framework. The emergent White British codes were then closely compared with the existing South Asian coding framework. Where existing codes were conceptually transferable, these were preserved in the framework (e.g. advice from HCPs). A small number of nodes were added (e.g. smoking during pregnancy and out-of-date medicine). Some nodes remained in use for South Asian data but were not used in analysing the White British data as no instances were found (e.g. taking a child abroad). Subsequently, some of the generic nodes were discussed by both analysts and were amended to ensure consistency of meaning and validity across both data sets (e.g. decisions about taking medication).

The existing framework was amended to allow applicability to the entire data set. This became the final, comprehensive MIA family-coding framework. The South Asian data were subsequently revisited by the first analyst at this stage to ensure that the integrity of the coding was maintained following the changes. All transcripts were systematically coded in NVivo using the resultant comprehensive framework. This allowed further case and cross-case analysis to be performed between and within subgroups.159

Results

South Asian and White British comparative findings

Comparative findings from the South Asian and White British families are described below. Parents’ and carers’ data were explored using the following key themes: beliefs and understandings about asthma; the role of the extended family and community; medicines; non-medical management; asthma control; interaction with NHS services; and school and asthma. This is followed by key themes identified from the children’s data: understandings about asthma; interaction with healthcare systems; children’s self-management of asthma; perceptions of asthma; and school and friends.

Parents and carers

Beliefs and understandings about asthma

The major theme, beliefs and understandings about asthma, consists of two subthemes: aetiology and exacerbation, and previous knowledge and experience of asthma.

Aetiology and exacerbation of asthma

Both South Asian and White British families provided a number of possible explanations for their understanding about the origins of asthma. Aetiological ‘causes’ of asthma and exacerbations or ‘triggers’ for asthma, however, were often confused in the interviews in both groups (reflected also in the community study). The most commonly mentioned causes across all families were environmental (e.g. the weather, damp, dust, pollen or pollution), physiological and genetic causes (e.g. weak immune system, asthma being hereditary or mothers not breastfeeding). In addition, dietary and lifestyle causes and the idea that asthma was predestined or fated for a child were mentioned. While views about environmental, physiological and genetic causes of asthma were similar across the sample, South Asian families were much more likely than the White British families to discuss the possibility of asthma being in a child’s destiny or related to karma. Of the 18 South Asian families who discussed religion and fate relating to the origins of asthma, 10 noted that it was attributable to fate. When this was discussed further, belief in either God’s will (Muslim participants) or karma, i.e. their child’s asthma was destined to be (Hindu participants), was revealed. No White British families discussed asthma as related to fate or religious beliefs. They were also more likely to attribute its origins to environmental or hereditary ‘causes.’ Nine out of 30 (30%) South Asian families and 5 out of 14 White British families (35%) felt that the cause of asthma was either not known or not identified.

There’s no, there’s no sort of identifiable cause but it is very common, becoming more common.

128FM, mother, Indian Gujarati

South Asian families also differed in their perceptions that environmental factors such as pollution were specific to the UK context. They compared the environment in the UK with that of South Asia (India, Pakistan or Bangladesh), where it was felt that there were fewer environmental triggers for asthma.

Across all families, the expectation was that asthma improved with age and was something a child could outgrow. Twenty out of 30 South Asian families and eight out of 14 White British families expressed this expectation.

Previous knowledge and experience of asthma

Previous knowledge of asthma, in particular recognising its symptoms, was important for families in subsequently managing asthma. If someone else in the family already had asthma (sometimes the child’s parent or older siblings), the family was more likely to have some knowledge about asthma and its management. However, in the absence of this experience, South Asian families were less likely to have heard about asthma. White British families were more likely to know that asthma was a condition that existed even without previous familial experience of it (Table 7).

TABLE 7

TABLE 7

Summary of similarities and differences between South Asian and White British families

Sources of knowledge

Many South Asian (n = 30) parents talked about their sources of knowledge about asthma. The types of interaction included advice from HCPs (n = 27); advice, knowledge or support from lay networks (n = 24; mixed views about its helpfulness dependent on complex factors); and the value of support groups (n = 4). A large number of parents (19 interviews) wanted more information or to ask HCPs more questions. Six talked about the knowledge they picked up ‘through life’. South Asian families also reported that their extended family was often a source of knowledge, as elders often influence the younger generation.

I’m not a doctor, if the doctor says she needs it, she needs it. Period.

063FD, Indian Gujarati

Yeah if we happen to talk to people at work about their child, we do talk about 123FC having asthma. Occasionally you get to hear good advice or stories about recovery or what to do and what not to do.

123FM, Indian Gujarati

[I]f there is a place where, it’s like a centre or something where there are other people who’ve got similar things and she can share it with other families, what they do with their children [. . .] sort of like a support group.

127FM, Indian Punjabi

I have not had any help but I have learnt things from observing. When my husband had asthma attack and ambulance people came, they asked for 2 quilts and kept him upright. I have learnt from situations like that.

125FM, Indian Gujarati

Interviewer:

Who influences you like that? Are we talking about grandfather and grandmother or ‘other people’?

Participant:

People who are elder to us and advise us we have to listen to them, grandfather and grandmother.

123FM, Indian Gujarati

The role of extended family and community

Few in either South Asian or White British families felt that their extended family, friends or community members were a central source of information about asthma and its management. However, families from across both ethnic groups reported that advice was often given, even if it was not adhered to. South Asian families were more likely to report advice giving by relatives than White British families, especially in relation to alternative remedies and management strategies. In some South Asian families, the grandparents lived with the family, and where this was the case they had a greater role to play in advising and decision-making around the health of the child with asthma:

. . . [Y]ou have this extended influence around you. There’s no doubt that clearly, living in the UK and obviously, born and raised here, that you’re far more accepting of different opinions. However, because you really do interfere quite heavily with an extended family, including quite generational so you have your parents and your grandparents, it’s not unusual where they all, just sometimes just say ‘Oh well, you want to go and see X, Y and Z,’ or ‘I know somebody, you know, somebody’s mentioned it to me’, so it’s not unusual for the family to give advice because they’ll see it as, oh yeah, you know, we just got, it’s one of their own, it’s not unusual.

120FD, father, Pakistani

In South Asian families, unlike in the White British families, the ‘advice giving’ from relatives in some cases extended to receiving advice from family members in South Asia. In White British families, advice most often came from family members who themselves had asthma.

In almost all families, the mother played the central role in managing the child’s asthma, although many fathers were also actively involved. Twenty-six South Asian parents talked about the member(s) of the family who made health decisions, and those identified as being involved included the mother (n = 12); the father (n = 8); both parents (n = 9); joint decision-making with the child (n = 7); the grandparents (n = 5); explicitly not the grandparents (n = 6); and the whole extended family (n = 1).

Well 110FD who takes the decisions mostly but he takes all my views, we decide silently, I can’t say ok yeah go with his decision but if I make a point then he will consider and change the plans so yeah.

110FM, Indian Gujarati

We both make the decision. Here we both take equal responsibility and decisions if it comes to children matters.

112FM, Bangladeshi female

Reaction from others

Across all families, telling others about the child’s asthma was sometimes a necessity because they might need to know what to do if there was an emergency. However, this sharing of information did not extend more widely, with a number of parents indicating that it was not necessary to discuss asthma with others beyond the immediate family context.

South Asian families were more likely to discuss the types of reactions that they had received from others about their child’s asthma; this included a small number of negative responses from others in the family or community (Table 8). These included the fear that asthma was ‘contagious’ or that it was caused by ineffective parenting. For a small number of South Asian families, mothers ‘felt blamed’ for their child’s asthma.

TABLE 8

TABLE 8

Summary of similarities and differences between South Asian and White British families

It might make a change because they blame me. [My extended family] just say, tell me that I don’t take care of her. That’s what they say to me. [Laughter] I’m not taking care of her . . . that’s what they think and then I just turn around and I say, what makes you think that? Is it because I’m working? Because I enjoy working? I’m not going to stop working because she’s ill, because that ain’t going to make her better. If I stop working, I can’t sit down with her twenty-four seven and say, Oh you feeling better? I can’t keep her from school and say Oh, don’t go to school, you’re going to get ill.

108FM, mother, Bangladeshi

None of the White British families reported negative reactions from others about their child’s asthma, although one mother felt that she may have been to ‘blame’ because she smoked during her pregnancy.

Information about asthma

Both South Asian and White British families reported a lack of information giving by HCPs in relation to asthma, especially a lack of written information and written plans for asthma. Subsequently, many families (8 out of 14 White British families and 19 out of 30 South Asian families) reported a desire for more information about asthma and how to manage it in their child (Table 9). Families would prefer this to be given by the HCP responsible for their child’s care, at a relevant time when it is needed (e.g. while receiving an explanation of what asthma is upon its diagnosis). When this did happen (sometimes at emergency admission to hospital), parents welcomed it because it helped them to better understand subsequent asthma management and avoid repeat emergencies.

TABLE 9

TABLE 9

Summary of similarities and differences between South Asian and White British families

It would have been nice for someone to have come over and tells us from the initial start how to control it. Doctor to advise you, this is how you do, give more time to the patient in actually explaining. Maybe have follow-up appointments who deal with asthma, who specialise in asthma patients and actually help those families to enable them to, sort of, overcome that barrier, really. Overcome . . . understanding how to deal with it.

109FM, mother, Bangladeshi

Families felt that it was important that this was information that could be shared with a child and was age-appropriate, but also that it was a consistent message given by all HCPs. Consistency of information was important for families in both groups, who reported feeling confused as a result of being given differing information by various HCPs at different times. This related, in particular, to guidance about when and how to take medicines. This inconsistency included differences between GPs in the same surgery, differences between the GP and practice nurse, and differences between the GP and the HCPs in ED.

The only advice our GP said to me is ‘increase the inhalers to try and prevent him from having a further incident.’ But it was very difficult at the time because at the [hospital] they had said ‘stop giving him the inhalers because he is so young, it might not even be asthma.’ So again it was a bit of a quandary with what to do . . . so it was difficult because we were told conflicting advice.

179FM, mother, White British

There were specific difficulties for families where the parents’ first language was not English. However, in these cases, families had addressed the potential problem by seeking access to HCPs (especially GPs) who spoke the same language as they did.

We try to go and see our Punjabi speaking doctor because we can understand what he is trying to tell us, but we have to see a white lady doctor as well, she is very nice but with her, we need someone’s help to get the information.

127FSC1, secondary carer, Indian Punjabi

The issue of language and understanding information from healthcare providers was not discussed frequently in the interviews. This could have been either because the families were fluent in, or could communicate in, English or because they had access to primary care staff with whom they could communicate in a South Asian language. As a result, they may not perceive this as a problem. However, several parents in the South Asian group reported that their first language was not English, with several interviews taking place in South Asian languages. One parent identified that this was something which needed to be improved for South Asian families.

But explaining, interpreting it in their language, as in speaking the same language and telling them, don’t know if that might help. It’s just an idea . . . Let parents know whether they can speak or not, they have to take interpreters. And that’s that question. Family member can go and discuss.

109FM, mother, Bangladeshi

Across all family interviews, there was little discussion about parents or children actively seeking information about their child’s asthma themselves. While a small number reported having heard things on TV or read things in the newspaper, no one reported looking up information for themselves. Additionally, no family in the study described having been given a written asthma plan.

Medicines

The major theme, medicine, consists of several subthemes: understanding medicines, taking and managing medicines, decisions about medicines, and side effects (Table 10).

TABLE 10

TABLE 10

Similarities and differences between South Asian and White British families

Understanding medicines

In both South Asian and White British families there was, or had in the past been, confusion about medicines for asthma. This related to the use of different inhalers: what they do and when to take them. Parents reported feeling confused about which inhaler to use, how frequently to give it and the dosage to administer. This related to the issue about inconsistency of information and lack of written information from HCPs.

Because, when the nurse at the hospital said, ‘Has she got an inhaler?’ And I said, ‘A blue one, we’ve been told twice a day,’ she didn’t say, ‘Oh okay, well, actually you can use it up to ten times, and you might find that might more be helpful.’ It was ‘Oh for goodness’ sake, that’s, that’s just a waste of time, it’s a waste of medication, that is’. You know, and that made me feel like ‘Oh great, so the doctor’s wasted my time and because of that, I’m here’. . . I don’t, well, we don’t know. So that would have been helpful. How we control it, and just, just consistent information about how often we should be using the blue inhaler. Not one person saying . . . twice and then two . . . two squirts in the evenings, as opposed to someone else [laughs] telling us that it’s well, you can do it up to ten times. That would have helped.

117FD, father, Indian Punjabi

Making decisions about when and how to use asthma medicines was an issue that a significant proportion of families discussed (11 out of 14 White British families and 26 out of 30 South Asian families). This related to their knowledge and beliefs about both asthma and the effectiveness of the medicine. Asthma medicines were not used consistently and this often related to the issue of diagnosis; if a child had not received a firm diagnosis, parents may be more reluctant to give medicines.

It’s still very much no one has ever said it’s asthma. And even to the extent when she was admitted I never said it was an asthma attack I just said she had a wheeze and she is short of breath. I never said it was an asthma attack. They have never said ‘oh it’s definitely asthma’. And because she is normally very well, this was her first episode where she has been that unwell that we’ve had to go into hospital, we tend to manage just with an inhaler. And we are rubbish, we don’t do them every day because most of the time, she is symptom free and it isn’t a problem. It tends to be the colder weather, gets a cold, a viral illness or whatever. She has been a little bit wheezy recently.

177FM, mother, White British

Five South Asian families discussed buying over-the-counter (OTC) medicines from South Asia, while a small number had travelled to India for treatment. Both South Asian and White British families described using OTC medicines in the UK, such as Vicks VapoRub®. Cough, cold and allergy medicines were mostly used either for comfort or for addressing other cold/flu/allergy symptoms.

Taking and managing medicines

Most families reported difficulties experienced with administering asthma medicines to children or remembering to take medicines, especially with younger children or children with learning difficulties. In general, in both White British and South Asian families, the parent took responsibility for the medicines until a child was considered old enough to take on this role. This often coincided with the child starting secondary school and needing to take charge of their own inhaler during the school day. A number of families described being unsure about whether or not the child’s inhaler technique was correct, and this was something that they would have liked more advice about. Spacers were often used to help with administering asthma medicines; this occurred particularly in younger children and where parents were concerned that they would otherwise not be getting the required dosage.

I don’t know if we are still using it right. When he is doing his inhalers he is getting smoke coming out and I am saying to him you can’t be doing it right because that shouldn’t be happening.

172FM, mother, White British

Strategies to help adherence, reported by both South Asian and White British families, included rewards and games, using reminders to make it routine, trying to disguise the taste, and having inhalers as part of a child’s usual ‘kit’ when out of the house.

Families gave a number of reasons for either why they chose to adhere to their medication or why they might decide to increase or decrease their use of medicines. Three White British families described using the medicines as prescribed for the fear of the consequences for their children’s health if they did not. Reasons for increasing the dosage mainly centred on instances of viruses and colds. Reasons for not adhering to the medicines were a lack of diagnosis, concerns about side effects, an absence of symptoms at certain times of the year, children refusing or deciding not to take their medicine, and misunderstandings about how to take the medicine. While families from both groups described making modifications to their child’s treatment regimen, South Asian families were more likely to discuss not giving medicines or reducing the dosage because of concerns about side effects or overdependence.

Side effects

The possible side effects from asthma medicines was commonly discussed by families in both groups (22 out of 30 South Asian families and 11 out of 14 White British families); however, South Asian families mentioned a wider range of concerns about this compared with White British families. Side effects mentioned by South Asian families included concerns about children’s growth, stomach problems, heart problems, addiction, reduced immunity, oral thrush, mood or behavioural issues and reduced immunity to drugs. One South Asian parent believed that medicines made their child’s asthma worse. White British families talked mainly of general concerns about the long-term use of medicines, and steroids in particular. They also specifically mentioned effects of steroids on weight, fear of overdose, behavioural problems, bowel problems and dry mouth/cold sores. Concerns about the long-term use of steroids, particularly in relation to dependence caused by ‘over-reliance’, was a concern for both South Asian and White British families. This related to the decisions people made about using medications.

That stuff can actually, sort of [affect his] growth or his bones can be a bit thinner bones. We were more sort of thinking, that if he’s going to have steroids, we were not worried about the pumps, giving steroids the pink tablets, which we were concerned about, because he was given that, let’s say, every 4 weekly, every 3 weekly . . . Because his body, immune system, would not work if you keep feeding him steroids and his immunity will be so broken down he’ll have to rely on steroids for the rest of his life, which I wouldn’t want.

102FD, father, Indian Gujarati

Non-medical management of asthma

Both South Asian families and White British families described using non-medical management and OTC medicines to try to help control the symptoms of their child’s asthma (Table 11). This included home adaptations and changes around the house as well as dietary modifications, religious solutions and non-asthma medications. While both groups engaged in changes around the home, such as damp dusting, vacuuming, changing beds more frequently, improving ventilation, changing flooring and not having pets, South Asian families described taking additional direct measures involving the child. This included keeping them warm or indoors (n = 6) and rubbing, massaging or patting the back (n = 3). A small number of South Asian families talked about symptoms of asthma being reduced by taking the child into another environment. This was usually to a warmer country in South Asia (India, Pakistan or Bangladesh).

TABLE 11

TABLE 11

Similarities and differences between South Asian and White British families in non-medical management of asthma

While diet was mentioned by White British families (e.g. the importance of eating healthily, cutting down on junk food), South Asian families were much more likely to adapt their child’s diet in an attempt to control symptoms; all South Asian families alluded to this practice. Avoiding physically cold foods, such as ice cream, and giving warm foods was a common strategy. Additionally, there was the issue of the intrinsic ‘hot’ and ‘cold’ properties of different foodstuffs (based on the Ayurvedic system, where an individual can affect their physical or mental status by taking either more or less of a particular hot or cold food).

[My husband] and [doctor] don’t agree with it. Whereas I’ve experienced where she’s had it and it’s gave a cooling effect . . . I think grapes are cooling fruits. And the next day she does . . . not wheeze but she coughs.

063FM, mother, Indian Gujarati

But then I do keep alert, you know, to see how much ice cream they’re having or how much cold thing they’re having. Like, obviously, their ice cubes, and when they put in the glass, I see how much they put in the glass, because that might, it makes them worse sometimes.

031FG, mother, Bangladeshi

There was a small amount of reference to the use of religious remedies by South Asian families such as praying, blessings, reading Scriptures (n = 9), wearing talismans (n = 3) and bathing in Mecca water (n = 1). This was mainly by participants who identified themselves as Muslim.

And herbal remedies, I don’t trust most of the medicines here today. To use what my mother and my father give me from the ancient history to me it doesn’t sound right.

109FM, mother, Bangladeshi

Parents talked commonly about alternative therapies. These took the form of herbal or natural remedies, religious remedies, acupuncture, breathing exercises or Buteyko, or magnetic therapy.

Well I rather have her alternative method therapy, if it was acupuncture or a healing method you know those oil massages and everything like that.

106FM, Indian Gujarati

Yeah, this breathing exercise, it opens your lungs and you breathe out and it opens your lungs every time you breathe out. [. . .] Let’s say in the morning and at the night because at night sometimes I get chesty coughs and sometimes I get chesty cough in the morning so that’s what I do to help me.

106FC, Indian Gujarati

It was a magnetic one he did, it was a magnetic therapy or something? We paid for that one as well, [laughs] but it was anything to get them better [laughter].

122FM, Indian Gujarati

Families often mentioned herbal and natural remedies taking various forms: oral, inhalation or applications. These remedies included drinking warm water (n = 1); turmeric (n = 5); honey, lemon, ginger or linseed in water (n = 11); Ayurvedic medicine, ready-made herbal medicines bought from a shop and herbal drinks.

If he [child] wheezes then she would say to keep him well covered up and warm . . . To give him warm water to drink.

112FM, Bangladeshi

In Indian community, they give (hudhra) which is turmeric powder in the milk which cleans out the chesty cough out, so we just boil the milk and put some powder on [. . .] turmeric powder, and mix it and it doesn’t taste of, it doesn’t have any taste, just let the milk goes a bit yellow. You treat that, soon the cough kind of settles or it’s cleared out, so that was one thing as a child he has normally always get.

121FM, Indian Gujarati

I’ve always used it. You know, when you’ve got the flu or you’ve got a cold, Vicks and hot water and steam, lemon and honey and that sort of thing. It’s just . . . I’ve picked it up from somewhere. There in your head somewhere.

105FM, Punjabi Sikh

Yes. I give him honey in boiled milk three times a week as I don’t give him cold milk because it affects his asthma because I think it will keep him feel better.

103FM, Pakistani

And he’s started this one now. He’s taking it, it’s an Ayurvedic medicine and it’s helping, well, people say it helps with the asthma. And, you know, that’s why we’ve started him on, see if it helps him.

121FM, Indian Gujarati

Control of asthma

Both South Asian and White British families talked about keeping their child’s asthma under ‘control’; however, there is no one set definition of asthma control. It was not always clear whether or not these references related to formal measures of asthma control used by families’ healthcare providers. In some cases, the previously discussed non-medical management behaviours (see Non-medical management of asthma, above) were also described as being carried out in order to keep things ‘under control’. For example, in both groups there were various understandings and misunderstandings of the meaning of asthma control.

I don’t want to give him puffs all the time when he doesn’t need it. So I’m rather hopeful as he grows up, he grows out of it so as long as he is getting better and you are giving him when he needs it and as he gets old he doesn’t have this problem to just try and keep it in control.

104FM, mother, Pakistan

However, a number of parents related asthma control to the regular and appropriate use of asthma medications.

I think a lot of it is to do with the medication, if he came off his medication I think he would be quite a poorly child.

180FD, father, White British

Some families also reported feeling that, as a result of variability in asthma symptoms after some trial and error and tailoring of medication, they were now more able to achieve good control of their child’s asthma.

And the only times, really, she’s had to have an inhaler is when she’s been poorly. So I’ve just increased it, you know, I’ve just increased it on myself, because, I know, when she’s poorly, she gets linked, it triggers off her asthma, so I’ve just increased it at those times, until she’s been over her, she’s been feeling a lot better.

115FM, mother, Indian Punjabi

We reduced the dose but he became unwell after a week or two so we went back to normal.

123FM, mother, Indian Gujarati

Interacting with NHS services

Data demonstrated that, for families with a child with asthma, there were three key ‘moments’ when they might interact with the NHS. These were:

  1. during the process of getting a diagnosis (mostly with the GP but in some cases with ED staff);
  2. when the child had an acute asthma attack (NHS Direct, out-of-hours service, ED); and
  3. during ongoing management (most likely to be the practice nurse or, for some South Asian families, the pharmacist).
Diagnosis

Getting a diagnosis for asthma was experienced as difficult in both South Asian and White British families. Seven out of 14 White British families and 13 out of 30 South Asian families reported that they had not received a direct diagnosis of asthma, despite the fact that all of the families recruited in to the study had been prescribed asthma medicines (Table 12). Many South Asian and White British families described problems in getting a diagnosis which were common to both groups: undue delays in the process, feeling ‘fobbed off’ or not being taken seriously, repeat visits to the GP with recurring problems, and feeling that HCPs were reluctant to make a diagnosis. Not receiving a diagnosis led to feelings of frustration, upset and anger.

TABLE 12

TABLE 12

Similarities and differences between South Asian and White British families in interactions with the NHS

It’s just getting people to listen, that’s what used to get me so angry because nobody would listen to me. When I used to take him doctors I used to mention my nephew had the same symptoms and now he is on all these inhalers. Because your nephew has got these symptoms don’t mean to say you have got the same thing, it’s just chest infection, it’s just something it’s just common to him, that’s what I used to get. I used to go in there and come out upset all the time.

172FM, mother, White British

There was a perception among families that HCPs (usually the GP) did not take their concerns seriously or were reluctant to diagnose their child with asthma and that this was related to a child’s age, the implication being that asthma is not or cannot be diagnosed in younger children. Some families reported having been told this directly by their HCPs, but then did not understand why they had been prescribed asthma medication.

Now we, that’s the funny thing, I just don’t know if I’m coming or going with them. I want to know if she has got it [asthma]. If she has, then, is it a permanent thing? Or is she going to get out the phase? So, when I did ask, he goes that ‘with kids, you can’t tell’. And I go, ‘What is the cause of it’. He goes ‘it could be many stuff’. He’s not given me a full diagnosis. He hasn’t told me, he hasn’t even confirmed she has got asthma.

108FM, mother, Bangladeshi

This experience was common to both South Asian and White British families. Not having a diagnosis for their child’s symptoms led to a great deal of uncertainty about the best course of action. Without an official ‘label’ of asthma, parents were unclear about whether or not to give medicines or how to manage symptoms. A small number of families reported ambivalence about the diagnosis when they did get it and, in some cases, they sought a second opinion (six South Asian and two White British families). Some parents were surprised that the symptom their child had (e.g. persistent coughing) was in fact a symptom of asthma. A number of families reported relief, with some reporting vindication on receiving the diagnosis. They felt that this conferred a status that gave them access to reviews and medications, in addition to making it easier to communicate the information about the condition to their child and to others, such as the child’s school.

Well the difference is that if; if you have got asthma then I can say that my child has got asthma. I mean if somebody ask me, I just say no, no, no the doctor hasn’t diagnosed it as asthma, I always say that.

106FM, mother, Indian Gujarati

In some cases, a diagnosis had been made or communicated by hospital staff following an acute attack and associated emergency visit to hospital. For those families, this had been a defining point in the process.

Acute attacks

A significant proportion of families had experienced the need to access the NHS in an emergency or non-routine situation. This had involved decisions from the parents about two things: (1) the severity or usualness of the child’s symptoms, and (2) where to seek help. The general perception among both South Asian and White British families was that the GP was the first point of contact in managing their child’s asthma, where appropriate (see Table 12). However, when symptoms were perceived to be beyond the assistance or expertise, or if the practice was closed (in the evenings and at weekends), families needed to make a decision about where to take the child. White British families were more likely to report using their own doctor’s out-of-hours service when the practice was closed (9 out of 14, compared with 3 out of 30 South Asian families) and when compared with other options such as walk-in centres or NHS Direct. In contrast, South Asian families were more likely to self-refer to ED in an emergency (13 out of 30 families).

Seven out of 14 White British families and 15 out of 30 South Asian families had experienced one or more emergency visits to the ED. In seven White British families and three South Asian families this had occurred following advice from another HCP: the GP, NHS Direct, the out-of-hours service or the walk-in centre. In some cases, being ‘referred’ to the ED on the first occasion led families to independently follow this process on subsequent occasions.

I just went to my GP and say I’m seeing the same symptoms. They referred him to the hospital. And [we’ve] just been going from there.

114FM, mother, Pakistan

A small number of South Asian families reported having been worried enough to call an ambulance, whereas none of the White British families had taken this step (though some had had an ambulance called on their behalf by a HCP). Both South Asian and White British families described dissatisfaction in relation to the experience at the ED, which included long waiting times for getting to see a HCP or getting a bed.

When our son had breathing problems, we went to the hospital and waited a long time. Everything seems to take too long. We went to the hospital around 12 midnight and came back about 5 am in the morning.

118FD, father, Indian Punjabi

White British families were more likely to feel that the GP cannot be an expert in asthma and, as a consequence, a small number of families felt that there should have been a referral on to an asthma ‘specialist’. However, where South Asian families felt dissatisfaction with the GP, they were more likely to divert straight to the ED. Some South Asian and White British families had received information relating to diagnosis via the ED’s HCPs and in some cases this was interpreted as meaning that the staff at the hospital had more expertise and knowledge about asthma than the GP.

Ongoing management

The ongoing management of a child’s asthma often required that families interacted with HCPs on a regular basis. Outside acute attacks or exacerbations, this usually took the form of the regular or annual asthma review with the practice nurse. Most families who described attending reviews (approximately one-third of South Asian families and two-thirds of White British families) were satisfied with this process (see Table 12). Here, the review was seen as a process which involved ‘checking’ things, such as inhaler technique and peak flow, rather than about getting a diagnosis or new information or for changes in medicines.

It’s more a question and answer session as to how they have been, but that’s not a review of their medication because it’s the doctor surely who has to sanction any new or alterations.

179F, father, White British

The nurses who provided this service were viewed positively by both South Asian and White British families. In the families who were not accessing the annual review (more likely South Asian families), this was often either because they did not consider it of much value or because they were seeking advice from other sources, such as pharmacists. Almost one-third of South Asian families specifically described accessing the pharmacist for advice about a child’s asthma and medications. Sometimes this was for a second opinion, sometimes for additional information about the medicines and in some cases the pharmacist demonstrated how to use inhalers or spacers. For parents who had difficulties with English, using a local pharmacist who spoke the same language meant that they could get clarity about the information given to them by the GP.

You see [my wife] want more information, probably haven’t got time or something so that’s why she went straight to the pharmacist . . . the pharmacist says the same language she speaks. Sometimes doctors do not speak the same language, the Gujarat language. So you see she tells me now, so that’s why sometimes she doesn’t understand what doctor say . . . She still don’t believe in the doctor, she will believe in doctor but not that much, not 100%, like 90% so she will always go for second opinion to the pharmacist.

101FD, father, Indian Gujarati

Only three White British families discussed the pharmacist and in all three cases it was in relation to trying to access medicines in an emergency without a prescription, and not about advice.

Negative experiences

A larger proportion of South Asian families (21 out of 30) discussed negative experiences when interacting with HCPs than did White British families (6 out of 14). However, the concerns were broadly similar and included being given inconsistent or conflicting advice, feeling that HCPs were not doing their jobs properly and poor communication.

Consistency of management

One concern expressed by both South Asian (7 out of 30) and White British (5 out of 14) families was about inconsistency of information and management by different HCPs. Families reported being given conflicting advice by nurses, GPs and HCPs, which caused confusion, particularly with regard to medicine use.

The only thing I am slightly confused about, which I don’t think information is good, I am not entirely clear about how she is supposed to take, I am sure I have had different guidance from [younger child] about how to use the inhaler as I am for [older child].

181FM, mother, White British

Professional skills and training

Both South Asian families and White British families had mixed opinions about the skills and quality of care provided by HCPs and this tended to relate less around the profession of the individual (nurse, GP or pharmacist) and more about how well they were felt to be doing their job. Complaints about professionals often related to things they were not doing: not treating asthma well or appropriately enough, not taking enough time to treat, ‘fobbing’ patients off, making incorrect diagnosis, not providing enough follow-up, not communicating well enough, or, in a small number of cases, acting in a ‘rude, patronising or unprofessional way’.

When we went to the GP surgery they were unhelpful. They never paid attention.

102FM, mother, Indian Gujarati

Communication skills

Both White British and South Asian families felt that there were communication issues relating to insufficient information giving, inadequate explanations about asthma and not having diagnoses communicated. As described above, a number of South Asian families also reported being unable to communicate directly in English with HCPs, and were therefore making decisions about who to access based on language needs.

Yes the main issue was about English language, there were difficulties about getting an interpreter.

123FM, mother, Indian Gujarati

Positive experiences

As well as negative experiences, 6 out of 14 White British families and 27 out of 30 South Asian families described positive experiences with HCPs. In the White British families, these included feeling that HCPs were knowledgeable, keeping parents informed and giving explanations, being ‘life-savers’, not rushing appointments, being child-friendly and giving good demonstrations. For the South Asian families, this included being supportive and understanding, being thorough and knowledgeable, and being proactive and child-friendly.

One thing for sure [the asthma nurse] made us comfortable. She was honest, she was very understanding of our knowledge. And she knew what she was talking about. She knew how to communicate, that’s the vital and clear point I want to focus [on].

102FD, father, Indian Gujarati

School and asthma

Both White British and South Asian families reported that the management of asthma in their children’s school was variable. In some cases, schools were described as being very proactive and having systems for recording asthma and using medications in relation to each child. In contrast, in other schools, the process was perceived as being fairly haphazard. School staff (which included teachers, teaching assistants and school nurses) were described as having varying degrees of knowledge about asthma and associated medicines. There were concerns from many parents (8 out of 14 White British families and 10 out of 30 South Asian families) that school staff did not know enough about asthma and this led to feelings of uncertainty about how it would be managed when children were at school (Table 13).

TABLE 13

TABLE 13

Similarities and differences between South Asian and White British families in school and asthma

But without being awful to them I don’t think they are that clued up on [asthma], which is another thing really. They have got a good system where they document when he has had the inhaler but I said just keep an eye on him because it’s his first day back. I kept him off for the rest of that week but you can’t keep them off forever can you. And I was on egg shells and I did come away thinking do they even know to use the [inhaler] . . . And you try to talk to them and they have got 30 children in a line trying to get in the room and the time is limited. But there is a school nurse there so presumably she would be . . . And [child] has told me before when he has needed his inhaler and it hasn’t been the teacher that gives it.

168FM, mother, White British

Ensuring that medications were up to date, accessible and administered appropriately was discussed in two-thirds of White British families and more than three-quarters of South Asian families. Having a clear diagnosis of asthma and understanding how medicines should be used was also mentioned by a small number of White British families, who were concerned about what they should tell the school in the absence of having received a diagnosis.

Management of a child’s medication by school staff appeared to be more of a concern in relation to younger nursery and primary school-aged children. Once children were older or began secondary or high school, they were more likely to be responsible for carrying and administering their own medications. South Asian families were more likely to report children missing school because of their asthma (17 families) than White British families (three families).

Impact of asthma

Parents discussed the impact that asthma had on them, their families and their children. For parents and carers, the main impacts were around taking time off work (four South Asian parents, two White British parents) and the emotional impact, fear and worry caused by seeing their child ill or in distress (23 South Asian families and five White British families).

It’s quite shock . . . shocking really. I’m quite traumatised at times because it was . . . a couple of times we had to take her in and out, it wasn’t just once. It was like coming . . . straight after she was diagnosed it was so difficult and, on occasion, every 2–3 months, this was a couple of times we went to the hospital. The first thing it was go to A&E and I don’t think you’re allowed to go to A&E now for such things unless it’s really, really severe. Yeah, all we did for five hours in hospital or even longer, half the night in hospital we had to spend with her while she was on the bed and she’ crying and screaming and they put the nebulisers on . . . and it’s quite . . . she’s so small and tiny. Tiny little girl. Poor thing. She was screaming, she didn’t like the mask thing on her face, it was happening all the time and she was getting scared of hospitals, was thinking ‘what was going on?’.

109FM, mother, Bangladeshi

While many families felt that asthma should not impede a child’s life, six South Asian families and two White British families talked about children missing activities or sport because of their asthma. For some South Asian families, there was an additional concern and worry expressed in terms of what a diagnosis of asthma may mean for the child as they grew older. This included a possible impact on their future job prospects (n = 7) and, for a small number of families with a daughter, the possible impact on future marriage prospects was discussed. White British families, in contrast, were less likely to express concerns in this way (Table 14).

TABLE 14

TABLE 14

Similarities and differences between South Asian and White British families relating to the impact of asthma

Suggestions for service improvements

Families had many thoughts and ideas regarding future interventions or projects. These included developing a cure so that children do not have to be reliant on long-term medication, and offering a better diagnosis pathway so that a diagnosis of asthma is made clearer to parents through appropriate tests and relevant follow-up appointments, thus helping to remove ambiguity. Families reported wanting more information on the condition, the warning signs, how it should be managed and what the inhaler was prescribed for. It was suggested that a telephone advice service or advice centre for asthma, where people were trained and have knowledge on asthma, would be beneficial. Parents suggested that for acute attacks, when advice was required quickly, a telephone advice service would be very useful. There was a desire for more information about asthma from someone who is knowledgeable. Families felt that using schools to educate and provide information and to run courses would be useful, with nurses teaching schoolchildren using demonstrations also being seen as beneficial.

Parents felt that advice, such as in leaflets or on posters, needed to be given in multiple languages. It was reported, however, that families would prefer a bilingual person to help convey messages and give advice. Families reported that multilingual leaflets were available at the pharmacy but suggested that they could be placed in temples and other community venues to aid ease of access to the information as well as raising community awareness. Additionally, families suggested that HCPs could visit temples and schools to talk about asthma and the symptoms, in addition to offering advice. Families reported wanting somewhere to go where they could communicate with HCPs, such as a community centre. A community centre would enable parents to meet other parents who have children living with asthma, in addition to allowing nurses and doctors to run talks and presentations. Families indicated that getting information into the community was important and, in order to do this, it was suggested that using bilingual people and lay facilitators in local community centres that people knew, which were run by people and leaders in the community who they recognised, would be most effective.

Practical elements of asthma management were highlighted as important factors to consider for future service improvements, for example helping children to learn about their inhaler or spacers, where to put their lips and when to breathe. Families also suggested that alternative remedies such as yoga, exercise or massage therapies would be useful in order to manage asthma. Families perceived that there was an inconsistency of care and therefore suggested integrating medical health records so that all HCPs treating the children were aware of past medical history.

Children’s understandings and experiences

Children’s data were explored, collated and discussed separately from the adults’ data to ensure that the children’s perspectives were clearly identified and accommodated in the intervention design process in later phases.

Children’s understandings of asthma

Children talked about their understandings of what asthma is. This was mostly described as a ‘problem with breathing’. Some children gave reasons or causes of asthma (often confused with triggers), which were similar to those given by their parents (e.g. weather and environment, being hereditary, or caused by or related to colds and viruses).

I just think, I’m just born with asthma. As mum keeps saying over and over again, the damp weather, yes, it just, you know, some people get colds and coughs from the damp weather, you know, I may have caught asthma from the damp weather and it just carries on in that type of weather.

063C, Indian Gujarati

I know it runs in families and stuff because me and my mum have got it.

174FMC, White British

A number of children from both groups reported that they did not know what asthma was or what caused it.

Interactions with healthcare system

Children discussed what they could and could not remember about having visited the doctor, the nurse or the hospital. Their memories of these interactions depended largely on their age or how long ago the visit happened. Few children could remember getting a diagnosis, but several recalled recent visits to the GP or practice nurse. These experiences were of a broadly neutral or positive nature. Both South Asian and White British children described the visits to the nurse or GP and related it to the need for monitoring or checking their asthma and medicines.

They listen to my heartbeat and they just generally check me over.

177FMC, White British

He [doctor], he’ll tell you what’s happening, what’s wrong, and if you have asthma or if you don’t have asthma, and he’ll tell you if you need a, the stuff for the inhaler you when you put it in.

107FC, Pakistani

Recalling acute attacks and related visits to hospital often involved more emotive descriptions, such as feeling afraid or upset.

I sometimes worry about like . . . I remember when I had the asthma attack, I was so scared, I thought I was going to die or something. And my mum was like, ‘oh don’t be silly’ . . . Not now because I know that I won’t die. Because if I would die then I probably would have died at the asthma attack.

105FC, Indian Punjabi

Like, I didn’t like [staying in hospital]. I like, I like . . . I really missed my dad and my mum, and my brother and my sister and my little sister.

114FC, Pakistani

Young children often remembered specific details about the visit to the hospital, for example that there were toys to play with, or what they had to eat.

Just a little bit scary . . . because sometimes you have to have injections . . . At the hospital I had the yucky medicine and it was pink and I thought it was yummy at first, but it was yucky.

111FC, Indian Punjabi

I had to have a gas mask, and I had to have injections, and like, it hurt . . .

107FC, Pakistani

Children’s self-management of asthma

In the majority of cases, for South Asian and White British families, parents were responsible for reminding and instructing a child about her or his inhalers, particularly those who used medications regularly in the morning and evening. However, children did also actively take a role in their own asthma management, especially as they got older, and often with encouragement from parents. Families discussed systems they had devised to help children remember their medicines.

Like so . . . so always have two inhalers of the same colour, like. So, if like . . . say if like this was another blue inhaler, if this one ran out then I’d tell my Mum or Dad or sister to go to the chemist to get another one so I’ll always have two whether they’re full or not.

105FC, Indian Punjabi

I have got a brown one which I have to take two puffs morning and night, but then I have got a blue one which I take when it’s super bad.

174FMC, White British

Both South Asian and White British children talked about sometimes being ‘nagged’ by their parents when they refused or forgot to take their medicines. Children identified their mothers as being most likely to help, instruct, or remind them about needing and taking their medicines. This also related to managing acute attacks where it was often the parents who spotted symptoms and encouraged children to use their inhalers.

I just, just suddenly I thought I could choke differently and I just really started to cough and . . . I had to literally run to get my pump and . . . I couldn’t breathe properly. So I had to take one. Well, sometimes it’s me [who decided to take my medicine] . . . most of the time. Because sometimes it’s just a cough a normal, natural cough. But sometimes it might be mum, she can go ‘oh [name] I would take your pump if I were you’.

063FC, Indian Gujarati

Children’s perceptions of asthma

One of the biggest impacts of asthma described by children was the impact on their ability to take part in play activities, sports and physical education (PE). In these circumstances, breathlessness and coughing were the commonest symptoms, with children either sitting out or avoiding activities.

Well, if it’s bad Mum tells me to take my inhaler to school in case I end up coughing really bad. I have had to do it once before but it was sports day and I wasn’t feeling too good but I still did it.

174FMC, White British

Because you know when I run the wheeziness starts and make me cough so much I get puffed out and I really don’t like it. So that’s why I take the inhaler sometimes when we come back from sports or anything. Like in school when we have sports day and sometimes I get puffed out, sometimes I say to the teacher or head teacher if I am puffed out I just say that I need my inhaler because I am puffed out. So we take the inhaler and stay out for about five minutes and go back in and then I am fine.

106FC, Indian Gujarati

The most commonly mentioned emotion related to asthma among children was embarrassment. However, this was usually through the child explaining that, although asthma could be considered embarrassing, they themselves were not embarrassed. Instead, this embarrassment often related to the perceptions of friends and peers (further details in School and friends, below). Other common feelings expressed by the children were fear, feeling upset and unfairness.

Why can’t I live a normal life like the others?

114FM, Pakistani

That I have to cough when my sister doesn’t cough, or I have to have more medication than she has to have. It’s a bit annoying sometimes but you get used to it.

177FMC, White British

I wouldn’t say ‘oh, I’ve got asthma, I don’t want people to feel sorry for me’. I just want to, you know, forget about it, put it to one side and when it comes, we’ll deal with it and then, when it goes, that’s it. End of story. Get on with your life. And, when it comes, you know, just sort it out.

063FC, Indian Gujarati

School and friends

A child’s peers and friends were described as having an important role to play in their experiences. Having friends who understood about their asthma, and in some cases could help if needed, was deemed important for South Asian and White British children. In some cases, this included having friends who themselves had asthma. Although it was widely discussed in the interviews, few children felt that having asthma and having to use an inhaler caused embarrassment for them personally (three South Asian, three White British).

At school it doesn’t affect me much, people don’t tease me or anything, they treat me normally, their friends are aware of my asthma, some of them have asthma themselves and they help me.

120FC, Pakistani

Despite asserting that asthma did not make them feel embarrassed, asthma was a cause to feel different or ‘not normal’, and a small number of children described managing information about their asthma as a result. For some, this also meant having to explain to others what asthma was. Some children reported that only their close friends knew about their asthma. One girl felt that using her inhaler at school attracted unwanted attention and one South Asian child reported being teased about their asthma.

Child:

No, I told some of them but I didn’t want to tell anybody at first and then I told a couple of people and then it started spreading.

Interviewer:

And why didn’t you want to tell them?

Child:

Because I was shy that they might laugh or something like that.

177FMC, White British

I don’t know anyone else at school who has it, none of my friends have it, I have to explain it a lot . . . they understand I have got it and I think they are alright because they know it’s not catching.

174FMC, White British

Children discussed the role of friendships and teachers as important in helping them to manage their asthma and medicine use while they were at school.

I was playing in the playground and I felt a bit wheezy, so I went to my teacher and said ‘[teaching assistant] I feel a bit wheezy’, and she said ‘Go inside and tell [teacher],’ so I went inside and told my teacher. She said ‘have a few puffs on your inhaler’ so I went to get it out of my book bag but I couldn’t find my pump, I could only find that little thing to shake. I felt a bit like, ‘where’d it go?’ and they rang up my dad and my dad got it from because I left it at home and then I did a couple of [puffs] and then I still felt wheezy so I went to the office and then they said I had to go home so I went home.

115FC, Indian Punjabi

Interviewer:

What about at school, do your friends know you have got asthma?

Child:

Yes and they mostly help me, like they usually go get it [inhaler] for me.

175FMC, White British

Suggestions for service improvements

Some children, along with their parents, discussed ways in which they could increase their understanding of asthma and offered ideas for future interventions. Children reported wanting to speak to someone who had experience of asthma, whether it was someone living with asthma or a HCP.

Well, I would like to meet somebody who’s knows a lot about asthma, like, who has asthma, and like, is a doctor, to know more about asthma. Like, how they, have they helped the person like they had asthma and now they don’t, they live a normal life, like you, you don’t have asthma.

115FC, Indian Gujarati

Children also suggested that face-to-face demonstrations would be useful to learn inhaler techniques.

They should say it to you face-to-face or, you know, they should tell you in some way how . . . what’s it for, how it will help, how, you know . . . what it does and why I need it.

063C1, Indian Gujarati

Some children and their families also described ways in which information could be provided that they would find most useful.

[On the website there should be] what happens in like, the lungs, and what’s happening in your body, and like, and things to improve on it. Like, what to do to help it. And stop it.

128FC, Pakistani

Pictures maybe.

115FC, Indian Gujarati

A presentation about it to a group of people sit down and some of the teacher can present. [. . .] They tell you things that I did not know like in more detail. The effects of inhaler, what it does and how it affects you. [. . .] The chemist and the GP were ok but the school one explained it best and easy to understand.

125FC, Indian Punjabi

[B]ecause, at the Gurdwara, we do Punjabi school where you learn the alphabet. And we could do something like that at each Gurdwara so, and like, people like adults could come with them and they could learn about it as well if it, if their child has asthma and they haven’t been to a doctor yet, [. . .] know about it.

115FC, Indian Gujarati

The interviews with families and children provided an opportunity for those affected by asthma to offer their perceptions of the barriers and facilitators to optimal asthma management, in addition to providing them with the chance to discuss their own ideas and how improvements to services and quality of care could be improved. These data formed the basis of the intervention development (see Chapter 5), shaping the development of the content and the delivery methods. Following on from the interviews with families and children, HCPs who have had experience of working with South Asian children living with asthma were interviewed to discuss their perceptions of asthma management and ways in which services and quality of care could be improved.

Healthcare professional interviews

Healthcare professionals are key stakeholders in service improvement and as such they were included in the project in order to identify their perceptions of the barriers and facilitators to optimal asthma management in South Asian children.

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).

TABLE 15

TABLE 15

Inclusion and exclusion criteria for HCPs in phase 3

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.

Consultations with South Asian families

Time

All HCPs reported that having insufficient time to talk to children and their parents and carers was a major problem. GPs reported how they struggled to cover as much information as they would like in the already-brief appointments. This was made more difficult when there was a language barrier or multiple issues to be discussed. ED staff and pharmacists also discussed limitations on consultations imposed by time pressures.

I guess there are always the usual time pressures. There is not enough time, no asthma nurse.

Time – if I have the ability at a time that is convenient to me and we can talk and then discuss it then, I would have no problems in employing an interpreter with every family I see. However, the only practical way of doing it out of hours is by a language line which involves making a phone call, getting the family to the phone for a stilted two-way conversation which I usual only resort to for serious cases. I appreciate that this is not best practice but one of the limitations of working means that I simply cannot spend that amount of time with every family I see.

Communication

Language barriers were the biggest single issue raised by all HCPs. The presence of a language barrier impacted on the time taken for all types of consultations. The ability of the HCP to explain and give information in a language that was understood resulted in simplified and less detailed information. Where possible, interpreters including family or friends brought in by patients were used. Several HCPs mentioned concerns about the quality and veracity of interpretation when informal interpreters were used. The Language Line service was also used by professionals, but this was regarded as slow and difficult to use.

I think language can be a difficult barrier, although we use Language Line regularly, it is not an ideal situation to have.

Some HCPs felt that, in some instances, communication difficulties led South Asian patients to be less confident about asking questions and left professionals feeling unsure that the information had been fully understood. Although they recognised that it was their responsibility to ensure understanding, they felt frustrated that this was not always possible within the time constraints of a short consultation:

With a lot of the parents that come in with prescriptions when we start to counsel them and ask how the doctor has explained it to them they will be quiet and just say ‘Yes’. They won’t say too much. We will say take this and needs to be puffed four times day and they will just sort of nod their heads and we have to say ‘would you like me to explain it again/did you understand?’.

Some HCPs reported deliberately adopting a different approach for some South Asian families where English was not a first language – speaking more slowly, providing less detailed information, and providing simplified explanations in a more direct and matter-of-fact style. Most HCPs reported engaging with parents during a consultation rather than directly with the child.

It is just a question of mirroring the patient. It is not that ‘I act this way with a South Asian family’. It is basically reacting to an individual really. If there are more than two people there it may need a bit more time and effort.

Obviously I tailor the language and when you change the language I think your manner changes as well, especially as there is a Bangladeshi ethnic minority as well and I have to really explain things quite slowly to them, just to make sure that they understand it.

I give less information, because I have made the assumption that giving more information will just get lost due to the potential language barrier.

Healthcare professionals’ provision of information on asthma

Most HCPs felt that they did not have sufficient time to provide information to patients and families. They reported that they tended to focus on medicines and inhaler techniques, offering very little information on explaining what asthma is or the impact of lifestyle or diet. Information was largely delivered verbally, with half of HCPs routinely using leaflets in English because translated versions were not easily available. Demonstration devices were felt to be useful but not widely available as a result of recent recommendations that devices should be single-patient use only due to issues with infection control, with multiple devices being difficult to store.

My priority is making sure they understand what medication does and when to use it.

I make it very clear at the top what medication is and how often they should be taking it. That’s all I deal with.

We talk about food allergies and common triggers and get them to do food diaries – so that side of it I would be happy. The medical/cultural treatments – I wouldn’t understand and as I don’t know about them it would be hard to give professional advice on them.

Healthcare perceptions of South Asian family barriers to effective management

Healthcare professionals reported that most problems experienced by families (of all ethnicities) were due to a lack of knowledge or misunderstandings about asthma and that this was particularly relevant in South Asian families. HCPs reported that this was due to language barriers, maternal education levels, and general unfamiliarity with asthma.

My perception is that the parents cannot clearly say what is happening, that they don’t really understand what you are telling them.

Healthcare professionals felt that South Asian families’ understanding and expectations about asthma as a chronic condition could impact on a HCP’s ability to achieve effective consultations and overall management. HCPs felt that South Asian families compared the UK NHS and treatments received in the UK with health services in South Asian countries (e.g. India). Their perception was that families looked to doctors to ‘fix’ problems rather than engaging in long-term management strategies. HCPs also described differing styles of family structures and parenting in South Asian communities, with, for example, a different style of managing children, less expectation for children to take a role in self-management, and the role of extended family and community leader in directing management all being factors that influenced asthma management.

Healthcare professionals suggested that South Asian families relied more on ED services, were less engaged with preventative or primary care services, and were less likely to adhere to prescribed medication, in addition to expressing a higher level of related symptoms of ‘breathing difficulties’ than White British families.

I did find it a bit frustrating with the management, because I would give them a management plan and then they’d come back three months later and they’d done something completely different to what I’d said, and invariably they’d stopped all the medication.

I think the worst for me is when the parents say [in front of the child] ‘Well they won’t take their inhaler, so there is no point’. That is really quite then to show the child that it is not that bad and that actually yes it can be managed.

I have found that a couple of the parents expect you to have a cure for asthma.

Community knowledge and attitudes

Some HCPs felt that general awareness of asthma was low among South Asian communities, particularly among older generations. They felt that this impacted on symptom recognition, acceptance of asthma as a diagnosis and the understanding of asthma and its management.

Medications

Most HCPs felt that families of all ethnicities were often reluctant to use medicines, in particular inhaled and oral corticosteroids. In addition, several HCPs recognised an increased risk in South Asian families of stopping treatment despite advice to the contrary from HCPs.

There definitely appears to be a reluctance to stay on the steroid inhalers.

There seems to be a perception that there is a case when they don’t need it [medicine] but they fail to realise that it is because of [their medicine] that they are feeling ok and that it is not just the inhaler it is to do with the medicines as well.

Professional/organisational barriers to the management of asthma

Interprofessional communication

Most HCPs reported that communication between services and professionals was problematic, with several significant consequences for families. Examples include limited options for co-ordinated working; information about patients being lost; contradictory messages being given to patients; long-term management planning being impaired and effective; and timely follow-up being compromised.

Consequences of communication difficulties were magnified if patients moved house across city/county or across county borders and families changed their GP and/or hospital. In these circumstances, most professionals reported that they were reliant on parents to pass information between services. Referral pathways between services were similarly reported to be problematic. HCPs felt that pathways were unclear, involved multiple forms and were unduly restricted by location, a process contradictory to the vision of developing quality integrated services for children:

There’s a huge variation between the various GP practices and there’ll be some practices that you hardly ever get a referral from.

We rarely get to meet the GPs that manage patients from the other end, so we consider that a barrier.

Ideally I write a little note in the system, a letter gets printed and that goes to the GP, ideally the GP would read that letter, knows what I was thinking, the parents will present to the GP because I have told them to, the GP will read the letter and take action. That would be an ideal situation. Does that happen? Does the GP read the letter? Maybe not. Do the parents attend the GP? Maybe not. Do I chase that up? No.

Available services

All HCPs reported some confusion among South Asian families concerning the nature and availability of asthma services. Many were reported to experience difficulty with keeping track of the numerous NHS services for children with asthma, and as a result often were unsure where to refer children so that they received the optimal service. For example, it was reported to be difficult to identify whether or not primary care practices employed a trained asthma nurse. Several expressed the view that the multiplicity of services often resulted in a lack of continuity of care and resulted in families visiting different services at different times. Several HCPs expressed concern that South Asian families were less likely to attend annual asthma reviews provided by the primary care practices to particularly review the child’s medication and inhaler technique.

The down side is probably that they don’t want to come [to the review] and I think that is – asthma is particularly difficult . . . the patients need to come back for review.

Professional knowledge and training

All HCPs interviewed for the study had received some asthma training but few had undertaken any specific paediatric education for asthma. There was a diverse opinion on the need to pursue further training. Several suggested that further training would be helpful while others reported that the existing options for further training were sufficient and that further mandatory training would consequently impact on service delivery. Most professionals reported being familiar with either the BTS guideline or a local guideline for the management of asthma. However, adherence to the guidelines was reported as variable: half of HCPs interviewed perceived variations in training and knowledge among professionals as a barrier to effective management.

I think across the board, training is an issue. People don’t always get the right educational support to manage professionally in that role. You learn by dealing with them in the right way, but it is not always the correct way and that is where confusion arises in patients and parent’s minds.

Diagnosis of asthma

Healthcare professionals reported very few problems regarding diagnosis. They indicated that they did not perceive underdiagnosis or undertreatment to be issues in South Asian families, and stated that they were not aware of issues in accepting diagnosis in South Asian families. Participants reported that it was usual for HCPs to make a structured diagnosis using testing where possible, depending on the age of child, and that it was generally best practice for the GP to diagnose asthma as they are most likely to be aware of the child’s history. Asthma diagnosis in preschool children can be an issue with HCPs, with a reluctance to make a diagnosis unless there are strong features that increase the risk of asthma such as personal or family history of asthma. GPs indicated that they could not always make a clear diagnosis and they would suggest a review with a nurse. HCPs felt that South Asian families often did not return to these follow-up appointments, which may contribute to problems with diagnosis. HCPs did not suspect underdiagnosis in South Asian families as they described parents as ‘overanxious’ and as tending to be very quick to seek help. HCPs reported a general desire among parents to want tests or something concrete to be done, and this was particularly noted in South Asian fathers, but a number of interviewees went on to note that this was a general parental issue and not specific to South Asian families.

Interviewer:

Have you had any difficulties around diagnosing asthma in South Asian families?

HCP:

Not particularly. I don’t think this is necessarily related to Asian families. We always, I think the party line from paediatricians and GPs is, the age at which you make that diagnosis, given the very high prevalence of viral induced wheeze and then significant crossover between symptoms, so I don’t think it’s necessarily to do with South Asian families. They seem to be equally accepting of the diagnosis as Caucasian families are. I don’t think it would be an underdiagnosis because by and large, Asian families are quick to seek help.

Interviewer:

Is that more noticeable in South Asian families versus white families or is that more normal for families generally?

HCP:

I am not quite as sure about that distinction as I am about the families being concerned. I suspect probably more families want some clarity – fathers more actually. Definitely there are certain things that fathers want. They need to feel that their trip has been justified in some way and that just being sent home with a casual nod is not always to their liking. I am not quite sure about that as I am about the clear distance between accepting a fever on its own is not a matter of great concern.

School management

Despite children spending most of their day at school and, therefore, there being a need to ensure that they are being managed effectively when at school, few HCPs felt that they could comment on school management of asthma as they felt that this was outside their remit. However, the education professional interviewed for this study expressed a view that teachers and other members of staff in schools were provided with very limited training on the management of childhood asthma.

Interviewer:

What about the rest of the teachers in the school, would they also be able to help the child with an inhaler?

Participant:

I would say not all of the staff are trained. The main teachers are not trained.

This interviewee also felt that the limited availability of school nurses means that schools are reliant on parents to share information and provide their child’s medicines to school staff.

Interviewer:

You are not getting letters from the GPs or the hospitals, I take it?

Participant:

No.

Interviewer:

So you are entirely reliant on what the parent tells you the GP said?

Participant:

Exactly!

Interviewer:

Sensitive issue there.

Participant:

Yes, it is something that is not the ‘done thing’.

Suggestions for service improvements

Healthcare professionals had numerous thoughts and ideas regarding ways in which the quality of, and access to, care could be improved. These included the utilisation of an asthma nurse for follow-up appointments or the monitoring of children’s asthma, as well as being available for home visits. HCPs indicated that they thought this would be particularly useful for South Asian families. In an ideal scenario, asthma nurses were seen as linked to tertiary clinics, with regular contact with GPs still being necessary as the nurses should not provide an independent service. HCPs perceived that patients were more likely to attend specialist appointments than to attend a GP appointment, and therefore providing more access to appointments with asthma specialists was a further suggestion. The possibility of giving asthmatic children 48-hour open access to GPs, so that once a diagnosis has been made the child can be seen quickly to reduce anxiety for parents, and reduce unnecessary presentations at ED, was also suggested. A further option was to lengthen GP appointments specifically for asthma to ensure that information can be discussed in detail and so that both patients and GPs did not feel rushed and miss out vital information.

Healthcare professionals highlighted that inconsistency of care was a problem and suggested training for HCPs to be consistent across the region, so that everyone gives the same, consistent advice to families. It was suggested that asthma management should be added to regular, rolling education programmes for HCPs, with content regarding how ethnicity might impact management, or basic training in South Asian languages, though problems with the large number of languages this might involve were also highlighted. Following on from the discussion regarding language, HCPs felt that leaflets with asthma information in should be translated into multiple languages, or be written in simple terms or with a lot of diagrams in order to make information more accessible. HCPs also indicated that better access to interpreters would help with diagnosis or management strategies and would help improve parental understanding. To ensure, or aid, consistency of care, HCPs suggested that combined or shared patient medical notes should be available for all professionals involved in care so that they could automatically see any developments or changes such as hospital attendances or changes in medicine.

Healthcare professionals held the view that South Asian mothers do not drive, and therefore suggested that services need to be local and accessible, and also need to take into account school days or holidays. Having a drop-in centre or training evening in local pharmacies or community-based venues where a doctor or nurse is available to demonstrate inhaler techniques or discuss management plans was felt to be a way to overcome geographic and travel issues. HCPs also suggested that more information and education is needed in schools so that children learn basic ideas about asthma when they are young. Additionally, this may reduce any stigma associated with asthma and the use of inhalers, which may subsequently reduce non-adherence with treatment.

Anywhere, probably in GP surgeries where we are trying to get them in more: give them more time on appointments. The more educational devices in different languages the better. Use the things that the normal mother can understand. The mum can come and be a bit more involved in the child’s care rather than relying on the dad to come. But probably at the hospital – have an asthma specialist there.

I think that is general, but more so with South Asians, who do seem to like a home visit and then have a telephone – triage thing – because a lot don’t like to visit and it would be nice to have a number (if they have a problem) and be able to triage on the phone – or we could triage them on the phone. Then we need more interpreters, I think.

What’s worked quite well in the past with adults is we’ve sometimes had specialist asthma nurses coming into practice, and running clinics, (haven’t we?) and we’ve found that we’ve been quite successful with that, sending out the invitations and patients have come quite happily to have their inhaler, medication, whatever, reviewed. But, so, I don’t know if there was a specialist community paediatric nursing service available, whether patients would feel that that was something special, relating to their condition and a spec- a resource that they were able to tap into if necessary.

A follow-up person who would be employed solely to look at previous discharges from the day to ensure that the action plans for follow-up of those patients have been implemented.

Giving a training to the few pharmacists in that area would be helpful and literature resources would be really helpful possibly giving to the patients like are they new diagnosed with asthma to get the basic understanding of the basic issue and the facts and may be like we have blood pressure days, diabetes and do they have any national asthma day.

Discussion

This phase of the study provided an opportunity for parents, carers, children and HCPs to offer their perceptions regarding barriers to optimal asthma management in children. The Children’s Outcome Forum report recommends that, when considering strategies for improving outcomes for children, health professionals should work in close partnership among themselves, and that other agencies (developing an integrated approach with families, children and young people) must be placed at the centre of such initiatives.2 As well as incorporating the perceptions of key stakeholders, the study was also designed to be sensitive to the needs of the NHS in providing solutions that are feasible and sustainable. The tailoring of generic services and the improvement of the cultural competence of existing organisations was one way this could be achieved.160 This phase was, therefore, designed to explore ways in which existing services could be enhanced for a wider population by using a comparative White British sample in order to explore key issues that were similar for both White British and South Asian families which could be effectively addressed in a common, generic intervention programme. However, the analysis also revealed several issues that were specific to South Asian families which should be addressed by tailoring of interventions to meet these specific needs. The key findings from the families (parents, carers and children) and health professionals from this phase are summarised below. These findings were designed to be synthesised into the multifaceted tailored approach required to develop the asthma intervention framework and formed the basis of the next phase of the study (see Chapter 5).

Summary and discussion of key findings

Understanding asthma, including the recognition of symptoms, triggers and management strategies, is central to effective asthma management for children. Having this knowledge supports the development of a partnership between families and health professionals and increases the opportunity for the child and family to be fully involved in decision-making. Health professionals, therefore, have a responsibility to deliver information to families and to check the understanding of this information. The BTS guidelines4 recommend what information should be shared with patients, with the Scottish Intercollegiate Guidelines Network and Asthma UK (www.asthma.org.uk) having developed leaflets that are available for HCPs to provide to patients and families. Despite these resources being available and national recommendations instructing health professionals to take a role in providing education as part of their consultations and management plan, families in this study reported either that information had not been provided to them or that they had difficulty in understanding the information. None of the families recalled an asthma management plan being provided by any HCP, despite this being a national recommendation which has now been included as one of the national asthma quality standards.4 Both South Asian and White British families also highlighted issues related to the consistency, timeliness and quality of the information provided which often lead to confusion about the different medications available and the techniques required to deliver them (e.g. how to use inhalers). The families requested that information be provided both face to face and in written format for later reference. Only half of the HCPs in our study provided South Asian families with information in a format other than verbal. This may not be a reflection of the quality of care received, but may be a result of lack of availability of information for non-English speaking families in written or other forms.

Understanding what asthma is and how it is managed was also found to be variable among South Asian and White British families (including children), with similar confusions and misconceptions regarding causes, triggers and nature of asthma in both groups. Both groups had similar views on issues such as the origins of asthma, role of genetics and the perception that one could ‘grow out’ of asthma. It is apparent that further efforts are required to check if the diverse ranges of healthcare providers delivering an asthma service understand and adhere to national guidance on information provision. This includes checking whether or not the children and families understand the information being provided to them.

This study revealed that, to some extent, all families, regardless of ethnicity, had to overcome barriers related to information provision or in understanding the information provided. However, these barriers were more pronounced for South Asian families because of language or translation issues. Where families had no previous exposure to asthma prior to diagnosis – South Asian families in particular – they tended to be less familiar with bio-medical definitions of the characteristics and management of the condition. HCPs should not, therefore, assume a level of understanding among families, something which should always be checked at the beginning of any consultation. Interestingly, the South Asian families did not directly raise language barriers as a major issue; however, the data suggest that this may because they had developed their own mechanisms to overcome these. Families reported that they used strategies such as seeking out GPs who could speak the same language, choosing to attend the ED where interpreters were more easily available or accessing their local pharmacist who was often of the same cultural background or could offer advice in a language other than English.161 HCPs did raise language as a major barrier and felt that they had limited provisions to overcome it. HCPs also suggested that they required more time for their consultations with South Asian families in order to effectively utilise interpreters, talk slowly or use alternative ways of addressing the communication difficulties. They also raised concerns that, due to time constraints, they were not covering all of the issues which may affect South Asian families, such as dietary changes (see Suggestions for service improvements, below), and subsequently may provide those families for whom English was not their first language with less information than they would provide to White British or other English-speaking families.

Healthcare professionals reported that during consultations with families, their own focus was on addressing the medications required for treating asthma, with little attention given to a more holistic approach to management. This included the influence of the physical environment (e.g. rain, cold) and diet on asthma exacerbations, or the impact of asthma for the child as they move into adulthood, factors which were perceived as important by South Asian families. This was partly related to a lack of time to address additional issues but also, potentially, to a lack of cultural competence and awareness of the issues that may be important to South Asian families. Furthermore, this is complicated by the fact that South Asian families may be more likely to be given additional (and possibly contradictory) advice about asthma by members of the wider family and community (in the UK and overseas). For example, South Asian families were more likely to describe being advised about particular dietary inclusions or exclusions and about the use of complementary therapies of various kinds, or seeking support from religious leaders (supported by phase 2 data), issues often overlooked by HCPs. It is important, therefore, to encourage HCPs to positively engage these key individuals, some of whom may also be providing a caring role to the child, and to be aware of the types of information that is being shared within families and communities to better understand the context in which a child’s asthma is managed. Asthma education programmes within the UK, such as nurse-led asthma reviews, traditionally focus on the direct family unit of parents (often the mother) and child, with little acknowledgement of the need to include the wider family.

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.165167 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.

Conclusion

Building on the findings from phases 2 and 3, the study of families and HCPs identified the need for interventions that addressed multiple levels of influence on health outcomes at the patient, provider and system levels. This included understandings, beliefs and behaviours of all parties (parents, children, communities and HCPs), in addition to the impact of how healthcare services were organised. The findings also reinforce the importance of collaboration with service users and other stakeholders and the relevance of exploratory qualitative methods of inquiry. Listening to the voices of participants in this detailed way enabled the research team to understand the perceptions and experiences of parents, carers, children and HCPs. The project was thus able to reflect on issues considered important to those receiving and delivering care, and to work with both groups to design an intervention programme which includes those issues at its core. This work was subsequently taken forward into the fourth phase of the project, the collaborative intervention design which is discussed in the following chapter.

Copyright © Queen’s Printer and Controller of HMSO 2014. This work was produced by Lakhanpaul et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Included under terms of UK Non-commercial Government License.

Bookshelf ID: NBK260080

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