How do young adults experience asthma? Implications for education

1. How do young adults experience asthma?Implications for education by Didy Button Flinders University School of Nursing and Midwifery

3. Breath is Life ….breathing comes naturally; it is so rudimentary that it requires no action of volition, no attention or thought. But, for that very reason the wisdom of breathing is the most difficult, and the very last to be learned. What is closest and most familiar is taken for granted: it is farthest from our thought. Levin 1984 p.129

4. Asthma - the recognized face • Invisible • Intermittent • Predictable • Reversible • Easily treated with Bronchodilators • Forgotten until next time

5. Asthma - the unrecognized face • Severity underestimated • Under treated • Body compensates for  lung function • Inflammation is always present • Airway hyper-responsiveness  • Does not respond to Bronchodilators • Breathing is severely compromised • Expired air resuscitation fails • Death can result

6. Young adults missing group • National Asthma Council (NAC): Adolescents “problem group” • Few strategies to deal with adolescents or young adults • NAC no guidelines for young adults • Adherence guidelines no young adults

7. What the literature says • Literature centers on non-compliance • Gap in literature on experience of asthma • Particular omission young adults experiences

8. The Study • Qualitative research methods seek to increase understanding. • Ethics approval from Flinders University. • No participants identified as being ATSI. • All spoke and understood English langauage.

9. The Study • 24 young adults 18 to 26 yrs. • 16 Female. • 8 Male. • Living in the Southern Adelaide metropolitan (21) and rural areas (3).

10. Recruitment Young adults were recruited by purposeful sampling (snowball sampling). “Do you know anyone with asthma around your age who might like to talk with me about their experiences with their asthma?”

12. Participants

13. Participants Profiles

14. Participants Profile • 23 out of 24 had paediatric asthma. • 1 had developed occupational asthma triggered by animal dander.

16. 18 to 26 year olds Combined ‘X’ and ‘Y’ generations Born after the baby boomers Grown up with technology Immediate results Earn lots of money Young adults

17. Job security. Loyalty not paid off (redundancies) Confident. Delaying marriage. Children later in life. Young adults

18. Options Generation. Staying at school longer. Living with parents longer. Saw fathers missing seeing children growing up. Better quality of life. Young adults

19. Analysis • Thematic analysis of 24 interviews. • NUD*IST (Non-numerical Unstructured Data Indexing, Searching, and Theorizing)Qualitative research software helps people to manage, shape and make sense of unstructured information. • Theme identification.

20. Themes from the study • Asthma as an embodied experience • Hard drawn breath • Not knowing what to do • Strength to overcome • Willing to risk it! • Just get on with it!

21. The nature of Breathing and Asthma Conscious Illness (dis ease) Dys appearance Asthma is visible Unconscious Health(ease) Appearance Asthma is invisible Asthma Asthma Asthma

23. Past - first memories of asthma • I remember I was pretty scared for a while…… (David (19) first asthma episode and hospital admission aged 7). • I woke up one night and couldn’t breathe and Mum rushed me to hospital…. (Barb (26) first asthma episode aged 12).

24. First memories of asthma • I was in hospital when I was two or three, with croup, really bad croup, and I’ve always had it. Anne (23). • Well I’ve had asthma since as long as I can remember. Darren (22). • I’ve had it forever! Kay (24).

25. The human setting I’m meant to be taking Pulmicort and Bricanyl turbuhaler: but I don’t take them. I just feel it’s under control but I am always getting into trouble with Mich for not taking them. ….. I really only get it mild, as I said - apart from colds, say. I mean I do all the normal activities. Barb (26)

26. The human setting ….It’s pretty hard…..I sort of know now that I can sort of prepare, or stay inside. I mean there’s not a lot I can do but I it’s there in the back of my mind so you know, between summer-winter , I can prepare a bit. I mean there’s nothing - Just sort of take it as it comes, usually. [Laugh] Barb (26)

27. The human setting The dust the winter and the dog, I am back to needing to use my Ventolin everyday, I am waking up wheezy and then it gets better again during the day and when I am back home I get it back again. It is probably not very well controlled at the moment…… Cathy (23)

28. Human setting We always hoped it would go away but it never went away, so I just forget about it now. I can’t do anything about it so I might as well just get on with my life. David (19)

29. Human setting It’s not like you really care about it. I don’t sit there and get angry……. It’s just another thing, like if you get a headache, you don’t start blaming your head. You get nowhere. You just take some medication and move on with it. David (19)

30. Without warning, boom out. It’s no good at all It’s there 24/7 Asthma I thought I was going to die It never fits in with what I am doing It’s a pain It sucks Just get on with it You are just aware of it all the time A challenge It just pops up from no where I think you loose confidence You’re ALWAYS thinking about managing it Exploding in my chest Disappointed

31. Implications for education In this study young adults with asthma from childhood: • had little knowledge about asthma pathophysiology beyond bronchoconstriction and use of SABA. • any education was directed to their parents/care giver.

32. Implications for education • These young adults did not recognise their asthma as a chronic health condition. • Rather they treated their asthma exacerbations like a cold virus. • They relied on SABA and after the symptoms do not improve they would see their GP. • Most did not continue ICS after they recovered.

33. Implications for education • Revise: • basic A&P point out differences between asthma exacerbations and recovery from childhood asthma and now asthma as an adult. • pathophysiology linking to known triggers for the young adult.

34. Implications for education • Explain the limits of SABA and the risks of over reliance. • Emphasise the importance of treating inflammation with ICS. • Explain strategies for minimising side effects of ICS.

35. Implications for education • Encourage and reinforce their own knowledge of body listening, for early exacerbation identification. • Discuss how they currently manage exacerbations of their asthma. • Explain the added benefit of regular ICS • Limits of SABA in inflammation.

36. Thank you for listening