Asthma trained nurses give more specific advice, look better at impact, Marked difference between what the doctors will give you in terms of advice and someone like a qualified nurse (120). The level of knowledge of HCP is vital (121), or parent perception of knowledge/experience/training (120)

Report feeling satisfied with NHS services (3)

GP misdiagnosis early in infancy affected all future relationships, lose trust completely (108)

Feel HCPs have no perception of problems/barriers faced by parents (103)

Feel is treated worse as not English, can’t speak English (124), perceived as hypochondriac as Asian [(163) dad] but especially by Asian doctors [(163) dad]. Mum disagrees. Other mum GP told her to stop coming, but child later ill therefore lose all trust in GP (108)

Prefer White doctors: get better treatment (103, 109, 122, 163 dad), explain better (123), or don’t care about doctor ethnicity (122/112/106/104/117, 163 mum), is older generation thing to want Asian doctor (163). Sometimes is useful to have doctor who is familiar with your religion (163)

When problems with doctors exist/get bad advice, etc., it is about individual doctor (103, 112, 104, 106, 117, 121, 125) or nurse, not racial

No concerns at all (116), good service (116), feel listened to as a doctor (110), but the hassle of going to A&E is still there, don’t self-prescribe (110)

Problems with surgery management (102). Locums who don’t know child, don’t know previous treatment, frustrating and annoying for parent (102). No consistent family doctor, different one each time (118) (either at practice or A&E). Worse if one-man-band, get to see him (121)

Services are haphazard in their delivery (120)

Support received

• School were saying to go to GP due to multiple attacks, school arranged nurse to talk to mum and head due to multiple absence, was useful, joint plan (104)

With diagnosis, would inform the schools, told teachers, in case something serious happened (120, 106). But without clear diagnosis, don’t tell school (120, 106, 118). Don’t tell school if don’t get many symptoms (119)

1. Hard to get multiple inhalers and spacers for school (126, 121, 108)
2. Children miss school (122, 104, 106)

   1. Necessity

      • – Parents concerned about child missing school but feel is necessary – if not well, can’t go (122, 104, 128, 110). Particularly if a set pick up at 8.00, if not well at that time, can’t go even if OK later (110)
      • – Mum feels kids get very tired at school which worries/upsets mum (106). Get tired if been in A&E overnight (121, 108)
      • – Lack of sleep from coughing is issue for child too, especially if have to go to school next day (106)
      • – Also choose to keep off school for a few days to minimise/prevent asthma – if send to school, will run around, isn’t warm enough, will make asthma worse (104)
   2. Feel school don’t understand

      • – Too focused on attendance figures (104), no feeling of working together, feel pressured by school to send child (124, 104), feel threatened by council about missing school (124) – has to show proof of illness, very angry about this, feel school think parents are lying about children being ill (114)
      • – Feel teachers get angry at parents for keeping child off school (122) but they catch colds which sets of asthma at school

Language barriers in communication (102, 112, 103, 115, 127, 128, 118, 123, 125) – stops mum from explaining properly therefore doesn’t get right answer (118), stops mums from going to appointments (129), can’t see asthma nurses (112, 102, 103, 127), can’t explain herself properly so feels doesn’t get best treatment as doctor doesn’t understand (129)

Some doctors don’t speak English well, and is hard to understand them, and even worse if mum doesn’t speak English well either (104). Interpreters aren’t always right dialect either, hard to understand (116), takes a long time to get an interpreter (123)

Herbalists speak same language (120)

Everything worse if don’t speak same language (2), makes it more anxious, harder to understand (115)

Don’t ask GP for interpreter – bring own if need or avoid going (129), don’t like interpreters as don’t want to have to tell anyone else what the problem is (116), need more interpreters, quicker availability (123), is NHS responsibility to provide interpreters (123)

GP attitude focused on immediate symptoms, how I fix that today, not longer term (120). Told by GPs is cough/infection/normal/will grow out of it, so feel have to manage symptoms alone (120). GP tells them not to come so much (108), don’t trust GPs (108)

In hospital doctors don’t come when asked, only when they decide is time to see you (123)

Happy with GP and pharmacist, easy access and approachable (116)

The nurse quicker to pick up on something’s not right, was willing to try different things, whereas the doctors were of a mind-set to carry on (120)

Looking at computer not her (2)

Have to feel that doctor is able and willing to help you or no point in going (104)

Parents not happy with ongoing symptoms (120) but not sure if can keep going back. When suspected asthma and child coughed for all winter, still feel can’t suggest is asthma, not their place to tell professional (116). Takes year to get answers, (123), sometimes still don’t talk to you or don’t explain properly to you (123). If doctors already told me once or twice, can’t ask again – they won’t say anything more, can’t keep asking (111). Don’t always understand doctors due to language barrier (1) but don’t tell them. Also about confidence to speak in public or to doctors (109, 117)

Know word wheeze, but not what parents say first, unless previous experience with asthma (124)

Doctor and nurses rude or dismissive (124, 108) or too harassed, not calming (103), no time to speak (120), better when give impression of having time (117), too busy/not enough time in appointment (119)

Familiarity with UK health service and rights is important too – don’t know can ask questions, don’t know what services exist, don’t know options for health, especially if new to UK (109, 128)

Related to SES and education level (128) – not used to doctors, don’t feel can talk

Don’t feel GP is willing to help (106), not give enough info, just say ‘do this’, no thought or consideration. Just give prescriptions (106) . . . Don’t bother to have conversations e.g. about steroid inhalers – don’t trust that doctor has knowledge or will be interested in talking (122)

ED: doctors very good (104), knowledgeable (102). Some have good relationship with GP (115, 116). No ethnic prejudices (116, 177), when problem is individual doctor, not ethnicity

Want to have to have a relationship with GP, want doctor to listen to me (104). 109 prefers female and young doctors – listen better

Don’t trust doctor due to previous error in medicine (1) therefore seeks second opinion

Making active decisions between use of medicines (in principle bad) and need to benefit. Helps mum feel in control if decides when to use inhaler (106), general principle is best not to give medicines [116, 117, 118, 121, 123, 125, 163 (dad), (108)]. Don’t want to give regular as best for body to learn to fight illness itself (111)

Choose not to give if child is well/doesn’t have asthma as daily medicines by principle bad (104, 1, 3, 127, 129, 128, 126, 116, 108, 111) put limits on how long don’t give for (1, 3, 127 – few days, take for 2 weeks then stop, miss maximum 3–4 days, 128) or limit how long will take for (129). Or can see is worse when don’t give so restart, now very sure is right to give every day (123)

Some know benefits but prefer not to use/want to wean off (104, 108). Long-term medicine use not good as a principle, generally prefer not to give even if know is beneficial (106, 121) or try to not use it today if possible (2, 106). Doesn’t take pred or daily inhalers, doesn’t tell hospital this on discharge – nothing they can do, and if he’s discharged then he is OK now (104). Not willing to start steroids as already taking other medicines (121)

Related to whether or not actually has asthma, if diagnosis unclear then not sure about giving any medicines (118, 108) or how long to keep giving for (108)

Faith in doctor – says to take, so take. No worries about side effects etc. (119). But in reverse, if doctor says not asthma, then isn’t, regardless of symptoms (111)

Doesn’t want child to have to use anything, including acupuncture/herbs, etc., for a condition mum’s not yet convinced she’s got no clear diagnosis (106)

Didn’t agree with diagnosis so adjusted medicines herself (126). Not sure as is all new, might or might not be asthma but using medicines anyway for now (117). Don’t know what spacer is for, why need to use therefore don’t (163, 108) decided themselves not to keep using (163, 108). Even when was explained, don’t believe spacer can work so don’t use (108)

Considers side effects and benefits and decides is worth it (110). Taking medicines OK as long as it works, but only salbutamol (111)

Older generation propagate fear of steroids (120) – will hurt the child – so if someone tells you this, even if UK born, get scared. South Asian community view steroids as ‘evil’ or ‘poison’? Comes from herbalists being very anti-steroids. Worry about steroids but not sure why (121)

Prednisolone tables – seen as used for severe cases (109, 106), feels like a lot to parents as are multiple tablets (106), Generally uneasy with steroids (115) but will give as understands it helps. Worry about side effects of steroids (128) so don’t give unless feel is essential. Also some trust in GP – says no side effects so is OK (123)

Often in line with western medications but sometimes to stop western medicines – (123) discussed a herbal treatment with GP, (114) stopped western meds but didn’t work (114)

Peak flow (118), height, weight, other things not sure on what – report this as part of being diagnosed (120, 104) or confirming asthma (106, 109)

No one is clear what test is though, one parent reports nebulisers and inhalers as part of testing (104)

Testing was useful (118)

Would like confirmation tests (airway function) but difficult when has other medical and learning needs (110)

Diagnosed in Bangladesh (129)

Wheeze primary symptoms (163)

Communication problem (2, 3) or language barrier (1, 2, 3, 109, 123)

Not being taken seriously (120, 122), frustration with repeated viruses, antibiotics, no diagnosis (120,116, 108), GPs seen as too quick to dismiss as a cold/kids get colds (106, 109). GPs give out inhalers without diagnosing asthma (108, 116, 126). Give cough mixtures first then inhalers (119)

Too young to diagnose (106, 104, 117, 121, 163), symptoms clearer when older (120), or diagnosed very young (under 1 year old) (119, 123, 114) but confusing overlap with other infancy conditions – ex prem, pneumonia, reflux, eczema

Symptoms unclear

• Without an actual attack no diagnosis made (120)
• GPs can’t give diagnosis due to unclear symptoms (120)
• Presenting with cough more than anything else (106, 109, 104) or vomit (105)

Doctors unsure, GP says ‘maybe’ asthma (105, 118, 163, 108), and PED not sure, might be bronchitis/asthma, can’t be sure if a one-off etc. ‘breathing difficulties’ used (103, 127), just use inhaler when gets chest infections (118) so not sure if has asthma or chest infections. Difficult if other chronic conditions, like swallowing problems, reflux, ex prem (163, 110, 108), can delay diagnosis of asthma

Doesn’t think is asthma, doctors isn’t asthma (but that was years ago, don’t seek newer opinion) (111)

Parents diagnosed asthma (110) are doctors, then GP does as they ask

Paramedics suggest asthma, but no one sure, GP not sure (118)

Confused as no clear symptoms, just tired/slower than siblings/not wanting to play (128,106, 109, 102), coughing at night, didn’t know was a symptom (128)

Manage at home themselves, thought was a cold (128)

For most, not clear when any one ever actually diagnoses asthma or who does it, but also not clear if these matter – parents do whatever anyway?

But, role in highlighting importance of management/to be taken seriously (105, 120), is more scary if actually asthma, is worse (111)

(105) given diary and peak flow, could see dips, believed diagnosis. Used breathing test for asthma – presume peak flow (103, 109) – helped parent accept it, seen as important to get right treatment (106), similar for (105)

Have less faith in doctors if can’t make diagnosis (106)

(106), without diagnosis presumed it would go away

If the pumps work doctors say must be asthma (127, 123)

Also understand that there isn’t a quick and simple test for asthma (123)

No follow up from paramedics to hospital to GP, no asthma nurse follow up (118)

A&E if severe (109, 104) If can’t breathe go to hospital/call ambulance (112, 126, 117, 111, 114). Listen for wheeze, if child asks for inhaler, does child need nebulisers (104) wait a few hours, if not improving, hospital (104), why wait till GP open (117). Get very worried if any DIB, feel need to have urgent treatment, no real assessment of severity (difficulty in breathing is automatically severe). Others judge for themselves if symptoms are bad enough to need meds/GP/hospital, etc. Don’t want to keep going to A&E, ambulance can do nebulisers at home which is useful (114)

Parents feel they judge severity – do ask child how they feel (115, 108) but can also hear wheeze or see chest/tummy rising or overall wellness of the child (115, 102, 101, 126, 123, 108, 111, 114)

No parents have systems in place to help judge severity other than own judgement. No Written Asthma Plans in anyone

Pre-existing knowledge of asthma to recognise symptoms (3, 130) is important (124, 120)

Extrapolate from other conditions – phlegm in cystic fibrosis is bad, must be bad for asthma too (102)

Get very upset/frightened by acute attacks, think might die, affects all future judgements (121)

A&E good, quick and assess quickly (114)

Does GP have facility to handle asthma – some do, some don’t (3), does GP have nebs/O₂/monitoring (101, 108) but hospitals have better facilities/monitoring (108, 111). Some GPs do have facilities (123), initiate treatment then refer (123)

Perceived delays, giving inhalers, wait to see if works, then get worse, then admit, or call NHS direct who say call ambulance, or see GP who refers to hospital, so why not just admit/go to ED? (120, 111, 114). Sometimes use walk-in centre, but not GP, no point (114)

Preference for hospital/specialist care, perceptions that GPs don’t know enough about asthma, get faster treatment at hospital (104). Hospital do ‘proper assessments’ (112), walk-in centre can be slow, don’t seem to recognise acute asthma/don’t have the knowledge (114)

If at night, GP closed (117, 108, 111) closed on weekends too (119). Can get past receptionists to get help (121), have to follow practice protocols (121). Others say easy access (123)

Choice of where to go relates to day of week and time (108), availability of appointments (3). Speed of service – slow in Children’s Assessment Unit, walk-in quicker (2), family know about walk-in at Charnwood (126), A&E fastest (114)

Use NHS Direct and get told to use out of hours/A&E (115). Some parents feel GPs tell them to go to hospital anyway, so why see GP. Others feel EDs tell them to see GPs. If call NHS Direct they call ambulance anyway (105). Fear that A&E might refuse to see (130) – get sent to out-of-hours service instead. Feel GP is annoyed if go to A&E but don’t like having to explain everything to receptionists at GP (108)

24-hour pharmacies at big supermarkets (126)

Don’t want to have to go through receptionist, explain everything, easier to go to A&E (108)

Get scared when develop symptoms for no clear reason (no cough/cold) (104), try inhalers but if not obviously working, go to ED (104) for fear of child having an attack (108), awareness of possible fatality (120, 122) – hear stories from friends (doctors and nurses telling stories about work) and on television. In Bangladesh something called Hafani – is a respiratory condition, possibly asthma, but is serious and generally die, so Bangladeshi mum thought of that and was scared and worried (112)

Not knowing what to do when can’t breathe (109). Is scary to see child with DIB (105). Frightened of unknown problem (112)

Another reason to go to doctor is so that they take responsibility – if don’t go, then is all on the parent – so better to go and they decide if need hospital or not (112)

Feels more comfortable at hospitals they know, doctors they know – even if waiting, you know this place, how it works (104). Can see treatment being given, seen benefits, feel reassured (129)

Nurses know more and have more time

More personalise or specific information/know history of child better

Look at different options

More closely monitored

Hiding illness is old fashioned, not done now (104, 123, 163, 114), associated to less educated, rural communities (110)

Not important enough issue to tell other people, always nearby (116). Asthma is a condition not an illness or disease (106), so not necessary to hide. Some idea that some illnesses are not talked about but asthma isn’t one of them [(104) acquired immunodeficiency syndrome would be, cancer might be, tuberculosis (123)]. Feels that the widespread use of inhalers has reduced embarrassment

View South Asian communities are in a habit of thinking one way, is ingrained, hard to change (116, 108). South Asian community a bit isolated from newer ideas (109, 108). But actually isn’t a problem when do talk about it (116). Don’t know about asthma, presume is bad, don’t want to know (163)

Thinks culture is overemphasised, when sit and talk, make a relationship, is not a big deal (128)

Stems from ignorance of asthma (129, 126) or from experience of what happens in Bangladesh, hafani? (severe asthma) makes you exhausted and weak – assume same will happen here (112)

Don’t bother telling family back in India, wouldn’t understand, too hard to explain (105)

‘Meant to be’/fate/God’s will – life is determined by God (112 115, 118, 119, 125, 114) definitely not (116, 123, 108), older generation attitude in Indian families (117, 108) that suffering now related to actions in previous life (125, 108), a punishment (108). Others deny any influence (104) – why would God want a child to have asthma. Or is about how family look after child, if not good, then get asthma (118, 108) (but in terms of controlling his diet, etc.), or how good your are in life/obedient lifestyle then Allah decides illness (119)

Genetic/inherited (117, 123), runs in families (118, 119, 125), not inherited (163)

Related to immune system (108), having tonsils out let germs in (111)

Tiredness (111)

Related to food eaten [chips and vinegar (118, 125)] definitely not about food [(123) (but still no ice cream in winter)], damp and cold (117), English climate (118, 123), viruses (118), dust/pets/cleanliness (123)

Thinks or is told that asthma is something you have everyday, but as symptoms don’t come everyday, then not sure this is asthma and doctors seem unsure too (106), asthma is something you get intermittently (116)

Even after acute asthma attacks, still not sure is asthma or something else inside him (121)

Is when tubes squeeze/tight, can’t breathe (163), get that air pipes are narrowed (111), but don’t associate that to asthma (111) (believe are permanently narrower than other children)

Parents report asthma in terms of controlled (120, 112, 123, 125, 110), is related to symptoms and amount of inhaler use – less equals control [but not none (104, 110, 116, 163)]. Being a more informed parent meant was able to detect when asthma out of control and go to GP for help (120). Control is a momentary thing – if not controlled has acute symptoms, not a long-term overall control (123, 125, 163). Say controlled but child reporting activity limitations, but don’t see that as a control issue (108). Also idea that if can control asthma via diet or lifestyle then don’t need medication (112). Is controllable by own actions (109)

Helps mum feel in control if decides when to use inhaler (106), work being understanding is helpful getting time off (118)

Gutted child has asthma (117) but reassured by Paula Radcliffe, keeps child in her bed (117). Helps to believe that will probably grow out of it, most important thing was said (117). Mum makes decisions (126, 118, 115, 109, 104, 111), mum and dad share decision-making (112, 130, 163, 114) some say is dad (102, 101, 127, 119). Parental self-blame – I let her catch cold, if I hadn’t, no asthma, so now is very restrictive (124). Felt I’d looked after him carefully so why this (112). Responsible for ensuring has medicines, has right food, is properly dressed (121). Feels family hold her responsible (129). Doesn’t live with extended family so not too influenced by any possible attitudes (117). Are handing some control of medicines and lifestyle to children (120, 114) but want to know what’s happening – don’t know how much they are using, watch prescriptions to see how fast using them

Anticipate that it will go away as child gets older (130, 105, 126, 125, 111) but worry that it will come back when she’s older. Expect and/or hope children to grow out of it (112, 104, 117, 121). Idea is to use as little inhalers as possible until grows out of it (104). Didn’t understand would come back, thought was one off episode (129). Don’t think it’s asthma anyway, just due to small wind pipes (111)

Expect future career limitations (129, 114), especially manual work, but do see it as manageable, can do some sport within reason (125)

But also see child as vulnerable now (109) or weak (109). Worry about child’s coping with asthma in the future if doesn’t go away, (129, 121, 114), don’t know what impact will be, having to take medicines (112). Worried child won’t have normal life (109)

Grandparents expect a child to stay indoors, not run around too much (108), not play football (119)

Worry about future children inheriting asthma (121)

Hard for older families to accept genetic/heritability – grandpa laughed at suggestion then got offended when son suggest it (120), others accept it fine (116)

Asthma is known in India so know the word but don’t really know what it is. Is seen as severe in India – use that as model for asthma but isn’t the same here. Don’t see asthma in Pakistan or India, not used to it yet. Not familiar with it (126)

Parents see older community as not open to the idea of asthma, don’t want to know

Maybe hereditary, not sure, maybe due to cold weather or damp, not sure (117)

Lots of confusion about links to eczema (120) and hay fever (112), does one cause the other

Seen as UK problem, doesn’t happen in South Asian countries (129)

Call parent (121). Very scary (121, 114). Get angry if not treated well or quickly (108), don’t like feeling ill/not getting better (108, 114), frightened (114)

Not sure what they want to know. Not sure if emotions can trigger asthma (121). Sees asthma on TV and people die, so worries about that (121). Not sure why gets asthma sometimes (163)

Not sure who they want to tell them, perhaps mum, best doctors talk to mummy (117) then mummy tells me

Hospitals have oxygen (101) this is good. Better than GP because can go whenever, GP has to go at odd times, miss school, etc. (108), miss family/brothers and sisters when in hospital (114)

Can be scary (115, 117) lying on bed – associations to other visits (115) or injections given previously (111, 106) or thought of other children dying or her dying (115). Very scary when feels like you can’t breathe (115) (really scared, burst into tears in interview). Nebuliser mask was horrible blowing steam at me (117), don’t like going, have to have injections (114)

Hospital playrooms good (111, 117)

Nurses nice and fun (111)

Many expect limitations in sports/exercise (3c, 114), think limited activity is normal part of asthma (114), others don’t (123). No limitations in daily life (163). Get angry with asthma, limits life, can’t do things (114)

Old films with sportsmen who can’t play due to asthma

Don’t know any current sportsmen with asthma

Belief that nothing can change this

Feels hard to breathe when running (130)

Why get it at all (116, 123)/why get it some days and not others (109). Little understanding of triggers – pets (123, 111). Some good understanding of fundamentals, tight tubes/squeeze (163). Lots of overlap to eczema and hay fever (114)

One unusual concept of asthma being related to water balance in body (115), says learnt this in school – if don’t drink enough, or is too hot, get asthma (115). Then wondered if the heat in India meant people didn’t produce steroids which is why got asthma (115)

Confusion with infections and asthma (115) and contagious nature of asthma (115), not contagious (123)

Maybe caught in from the damp air (163)

Brown inhaler doesn’t work (103) therefore don’t take

Misunderstanding of effects of brown inhaler – expect to feel relief. Not sure what it should do (115)

Not sure is using it right because it ‘doesn’t work’

Don’t know what spacer is for (130)

Don’t know what brown inhalers are for (130)

Do know what blue inhaler is for (130, 116, 111)

Blue inhaler is good as it helps me (111)/make you feel better (130, 103)

Nothing bad about inhalers (130) or fear of consequences of taking it – might have side effects/develop tolerance/get fat (103), do taste bad (115, 118) (would like it to taste like chocolate milkshake)

A good day is I don’t have to say have any symptoms (115), so no inhalers

Try breathing exercises but would prefer a medicine, is quicker (108)

If an emergency, spacer slows you down, so have to learn to do without (103)

Don’t carry it at school (130, 116) others do (120, 124)

Used to use it, not anymore (130, 126), don’t know what it’s for (116)

Think asthma is contagious (130), or get it from catching a cold (115). Think asthma is inherited (130), not inheritable (120)

Expect to grow out of it (120, 130, 106, 111)

Don’t think is given by God (115) – why give a bad thing, why would God do that? But maybe if you’re religious that might happen (115)

Get frightened by DiB as well (121). Get confused when doctor says isn’t asthma, is asthma, not sure, lose faith in doctor (121)

Get fed up taking medicines daily (115, 128, 118), was excited but got bored of taking it (118), want one tablet to make it go away. But pink tablets horrible, taste too strong (117)

Getting diagnosis is important, makes sense of why is wheezing (120)

Get scared, why do I have this (106, 115), gets upset with nebulisers/masks (109), this upsets parents to see child upset

Do get more attention from mum (126)

When feeling better, not when ill (3c), at start of asthma (123)

From someone who is knowledgeable about asthma (120, 112)

From HCPs in clinics

Nurses very good at education

Need time, full physical assessment