Benefits of an education programme on the self-management of aerosol and airway clearance treatments for children with cystic fibrosis

Abstract

Adherence to recommended aerosol medicines and airway clearance techniques (ACT) for children with cystic fibrosis (CF) requires self-management skills. A multi-centre, randomized, controlled trial was conducted to investigate the effectiveness of a self-management education programme called ‘Airways’ for six-to 11-year old children with CF and their caregivers. Assessments were conducted immediately before and after the intervention period, and six and 12 months after the post-intervention assessment. The pen and paper education programme was completed by the child and caregiver together at home. Participants in the intervention and control groups had similar baseline characteristics. A per-protocol analysis was conducted and for variables that changed significantly, an additional intention-to-treat analysis was performed that included data from participants in the intervention group who withdrew from the study during the intervention period. The intervention group increased the percentage of prescribed aerosols taken (P < 0.001) and this was maintained at 12-month follow-up (P < 0.001). There was no change in the percentage of prescribed ACT performed, although when the child was unwell, caregivers in the intervention group increased the frequency and/or duration of ACT (P = 0.028) in the perprotocol analysis but not in the intention-to-treat analysis. Children in the intervention group increased their knowledge of ACT (P < 0.001) which was maintained at 12-month follow-up (P < 0.001) and felt more positively about their chest treatment regimens immediately following the intervention (P = 0.017) but not at 12-month follow-up. There were no significant changes in the control group for these variables over time. No significant changes occurred in the caregivers' reports of self-management behaviours and self-efficacy in either group. The positive results suggest that ‘Airways’ is a valuable educational tool for primary school-aged children with CF and their caregiver.

Keywords

adherence aerosol treatments airway clearance techniques cystic fibrosis self-management

References

1. Bartholomew LK , Sockrider MM , Seilheimer DK , Czyzewski DI , Parcel GS , Spinelli SH . Performance objectives for the self-management of cystic fibrosis . Patient Educ Couns 1993; 22: 15-25 .

2. Bartholomew LK . Parcel GS , Seilheimer DK , Czyzewski D , Spinelli SH , Congdon B . Development of a health education program to promote self-management of cystic fibrosis . Health Educ Q 1991; 18: 429-443 .

3. Tobin DL , Reynolds RVC , Holroyd KA , Creer TL . Self-management and social learning theory. In Holroyd KA , Creer TL eds. Self-management of chronic disease, Orlando: Academic Press, Inc. , 1986: 29-55.

4. Bartholomew LK , Czyzewski DI , Parcel GS et al. Self-management of cystic fibrosis: short-term outcomes of the Cystic Fibrosis Family Education Program . Health Educ Behav 1997; 24: 652-666 .

5. McNabb WL , Wilson-Pessano SR , Jacobs AM . Critical self-management competencies for children with asthma . J Pediatr Psvchol 1986; 11: 103-117 .

6. Leonard BJ , Skay CL , Rheinberger MM . Self-management development in children and adolescents with diabetes: the role of maternal self-efficacy and conflict . J Pediatr Nurs 1998; 13: 224-233 .

7. Stapleton DR , Gurrin LC , Zubrick SR , Silbum SR , Sherriff JL , Sly PD . The effect of ‘Go and Grow with CF’ on nutrition and pancreatic enzyme knowledge of children with cystic fibrosis . Auist J Nut and Diet 2001; 58: 164-168 .

8. Bartholomew LK , Seilheimer DK , Parcel GS , Spinelli SH , Pumariega AJ . Planning patient education for cystic fibrosis: application of a diagnostic framework . Patient Educ Couns 1988; 13: 57-68 .

9. Quittner AL , Drotar D , levers-Landis C , Seidner D , Slocuin N , Jacobsen J . Adherence to medical treatments in adolescents with cystic fibrosis: the development and evaluation of family-based interventions. In Drotar D ed. Promnoting adherence to medical treatment in childhood chronic illness: concepts, methods, and interventions. Mahwah, NJ: Lawrence Erlbaum Associates , 2000; 383-407.

10.

10. D'Angelo S , Kanga J , Yates C . Compliance with chest physiotherapy in cystic fibrosis . Pediatr Pulmotnol 1992; 8 (Suppl): 320-320 .

11.

11. Patterson JM . Critical factors affecting family compliance with home treatment for children with cystic fibrosis . Fain Relat 1985; 34: 79-89 .

12.

12. Drotar D , levers C . Age differences in parent and child responsibilities for management of cystic fibrosis and insulin-dependent diabetes mellitus . Dev Behav Pediat 1994; 15: 265-272 .

13.

13. DiGirolamo AM , Quittner AL , Ackerman V , Stevens J . Identification and assessment of ongoing stressors in adolescents with a chronic illness: an application of the behavior-analytic model . J Clin Child Psychol 1997; 26: 53-66 .

14.

14. Parcel GS , Swank PR , Mariotto MJ et al. Self-management of cystic fibrosis: a structural model for educational and behavioral variables . Soc Sci Med 1994; 38: 1307-1315 .

15.

15. Hames A , Beesley J , Nelson R . Cystic fibrosis: what do patients know, and what else would they like to know? Respir Med 1991; 85: 389-392 .

16.

16. Henley LD , Hill ID . Errors, gaps, and misconceptions in the disease related knowledge of cystic fibrosis patients and their families . Pediatrics 1990; 85: 1008-1014 .

17.

17. Harbord MG , Cross DG , Botica F , Martin AJ . Children's understanding of cystic fibrosis . Aust Paediatr J 1987; 23: 241-244 .

18.

18. Seligman MEP . The optimistic child. Milsons Point: Random House , 1995.

19.

19. Downs JA . Effect of an education program on self-management of aerosol and airway clearance treatments for primary school-aged children with cystic fibrosis (PhD). Perth: Curtin University of Technology , 2003.

20.

20. Bieri D , Reeve RA , Champion GD , Addicoat L , Ziegler JB . The Faces Pain Scale for the self-assessment of the severity of pain experienced by children: development, initial validation, and preliminary investigation for ratio scale properties . Pain 1990; 41: 139-150 .

21.

21. Bartholomew LK , Parcel GS , Swank PR , Czyzewski DI . Measuring self-efficacy expectations for the self-management of cystic fibrosis . Chest 1993; 103: 1524-1530 .

22.

22. Bandura A . Social foundations of thought and actiotn: a social cogntitive theory. New Jersey: Prentice-Hall Inc. , 1986.

23.

23. Pocock SJ . Clinical trials: a practical approach. Chichester: John Wiley and Sons , 1983.

24.

24. DiMatteo MR , Sherbourne CD , Hays RD et al. Physicians' characteristics influence patients' adherence to medical treatment: results from the Medical Outcomes Study . Health Psychol 1993; 12: 93-102 .

25.

25. Davids LM , Henley LD . Investigation into compliance with physio therapy regimen in cystic fibrosis . Physiotherapy 1990; 46: 7-10 .

26.

26. Passero MA , Remor B , Salomon J . Patient-reported compliance with cystic fibrosis therapy . Clin Pediatr (Phila) 1981; 20: 264-268 .

27.

27. Koch DA , Giardina PJ , Ryan M , MacQueen M , Hilgartner MW . Behavioral contracting to improve adherence in patients with thalassemia . J Pediatr Nurs 1993; 8: 106-111 .

28.

28. Jacobson AM , Hauser ST , Wolfsdorf JI et al. Psychologic predictors of compliance in children with recent onset of diabetes mellitus . J Pediatr 1987; 110: 805-811 .

29.

29. Dolgin MJ , Katz ER , Doctors SR , Siegel SE . Caregivers' perceptions of medical compliance in adolescents with cancer . J Adolesc Health Care 1986; 7: 22-27 .

30.

30. Johnson SB . Chronic diseases of childhood: Assessing compliance with complex medical regimens. In Krasnegor NA , Epstein L , Johnson SB , Yaffe SJ eds. Developmental aspects of health compliance behavior. Hillsdale, New Jersey: Lawrence Erlbaum Associates , 1993; 157-184.

31.

31. Goeppinger J , Lorig K . What we know about what works: one rationale, two models, three theories. In Lorig K ed. Patient education: a practical approach, 2nd edn. Thousand Oaks: SAGE Publications , 1996; 195-226.

32.

32. Dodd ME , Unsworth R , Davis A , Webb AK . Individualised teaching improves knowledge and adherence with airway clearance techniques? Pediatr Pulmonol 1998; 17(Suppl): S346-S346 .

33.

33. Gudas U , Koocher GP , Wypij D . Perceptions of medical compliance in children and adolescents with cystic fibrosis . Dev Behav Pediat 1991; 12: 236-242 .

34.

34. Jaycox LH , Reivich KJ , Gillham J , Seligman MEP . Prevention of depressive symptoms in school children . Behav Res Ther 1994; 32: 801-816 .

35.

35. Berry JM , West RL . Cognitive self-efficacy in relation to personal mastery and goal setting across the life span . Init J Behav Dev 1993; 16: 351-379 .

36.

36. Sanders MR , Markie-Dadds C , Triple P . A multilevel family intervention program for children with disruptive behaviour disorders. In Cotton P , Jackson H eds. Early intervention and prevention in mental health. Melbourne: A.P.S. Imprint Book , 1996; 59-85.

37.

37. American Thoracic Society . Standardization of spirometry: 1994 update . Am J Respir Crit Care Med 1995; 152: 1107-1136 .

38.

38. Knudson RJ , Lebowitz MD , Holberg CJ , Burrows B . Changes in the normal maximal expiratory flow-volume curve with growth and aging . Am Rev Respir Dis 1983; 127: 725-734 .