"CF chatters": the development of a theoretically informed physical activity intervention for youth with cystic fibrosis

Fiona Jasmine Moola, Guy Edward John Faulkner, Jane Ellen Schneiderman

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DOI: 10.4236/ojpm.2011.13016                

Abstract

Despite the benefits of physical activity for youth living with cystic fibrosis (CF), the majority of patients are insufficiently active to meet physical activity recommendations. Existing physical activity interventions are atheoretical and tend to prescribe standardized exercise regimes which are often not appealing for children and compromise long term adherence. Following recent calls for counselling based physical activity approaches in the CF population, this study describes the development of a theoretically informed, parent-mediated, behavioural counselling intervention for CF youth―“CF Chatters”. We first a) describe the development of a grounded theory of physical activity in youth with CF; b) explain how this theory informed the development and implementation of the CF Chatters program and c) reflect on the findings of our pilot intervention using a case study research design. CF Chatters participants demonstrated self reported increases in physical activity and quality of life. While further development and more robust objective measures are needed to extend this investigative pilot work, our findings suggest that behavioural counselling is an effective modality for enhancing physical activity participation and quality of life in this life limited group of children and youth.

Keywords

Cystic Fibrosis; Physical Activity; Children and Youth; Behavioural Intervention Development; Qualitative Research; Caregivers

Conflicts of Interest

The authors declare no conflicts of interest.

References

[1]	Moorcroft, A. (2004) Individualized unsupervised exercise training in adults with cystic fibrosis: A one year randomized controlled trial. Thorax, 59, 1074-1080. doi:10.1136/thx.2003.015313
[2]	Nixon, P., Orenstein, D. and Kelsey, S. (2001) Habitual physical activity in children and adolescents with cystic fibrosis. Medicine and Science in Sports and Exercise, 33, 30-35. doi:10.1097/00005768-200101000-00006
[3]	Cystic Fibrosis Foundation Patient Registry: Annual Data Report (2009).
[4]	Berge, J., Patteron, J., Goetz, D. and Milla, C. (2007) Gender differences in young adults’ perceptions of living with cystic fibrosis during the transition to adulthood: A qualitative investigation. Family Systems & Health, 2, 190-203. doi:10.1037/1091-7527.25.2.190
[5]	Wheatley, C.M., Wilkins, B.W. and Snyder, E.M. (2011) Exercise is medicine in cystic fibrosis. Exercise Sport Science Review, 39, 155-160. doi:10.1097/JES.0b013e3182172a5a
[6]	Moorcroft, A. J., Dodd, M. E. and Webb, A. K. (1997) Exercise testing and prognosis in adult cystic fibrosis. Thorax, 52, 291-293. doi:10.1136/thx.52.3.291
[7]	Nixon, P.A., Orenstein, D.M., Kelsey, S. F. and Doershuk, C.F. (1992) The prognostic value of exercise testing in patients with cystic fibrosis. New England Journal of Medicine, 327, 1785-1788. doi:10.1056/NEJM199212173272504
[8]	Pianosi, P., LeBlanc, J. and Almudevar, A. (2005) Peak oxygen uptake and mortality in children with cystic fibrosis. Thorax, 60, 50-54. doi:10.1136/thx.2003.008102
[9]	Schneiderman-Walker, J., Pollock, S., Corey, M., Wilkes, D., Canny, G., Pedder, L., et al. (2000) A randomized controlled trial of a 3- year home exercise program in cystic fibrosis. The Journal of Pediatrics, 136, 304-310. doi:10.1067/mpd.2000.103408
[10]	Williams, C.A., Benden, C., Stevens, D. and Radtke, T. (2010) Exercise training in children and adolescents with cystic fibrosis: Theory into practice. International Journal of Pediatrics, 7.
[11]	Zach, M., et al. (1981) Effect of swimming on forced expiration and sputum clearance in cystic fibrosis. Lancet, 2, 1201-1203. doi:10.1016/S0140-6736(81)91440-9
[12]	Hebestreit, A., Kersting, U., Basler, B., Jeschke, R. and Hebestreit, H. (2001) Exercise inhibits epithelial sodium channels in patients with cystic fibrosis. American Journal of Respiratory and Critical Care Medicine, 164, 443-446.
[13]	Moran, B. (2008) Physical training in cystic fibrosis. Cochrane data base of systematic reviews, 1, 1-12.
[14]	Singh-Grewal, D., Schneiderman-Walker, J., Wright, V., Bar-Or, O., Beyene, J., Selvadurai, H., et al. (2007) The effects of vigorous exercise training on physical function in children with arthritis: A randomized, controlled, single-blinded trial. Arthritis Rheumatology, 57, 1202-1210.
[15]	Takken, T., Elst, E. and van der Net, J. (2005) Pathophysiological factors which determine the exercise intolerance in patients with juvenile dermatomyositis. Current Rheumatology Reviews, 1, 91-99. doi:10.2174/1573397052954235
[16]	Takken, T., Spermon, N., Helders, P.J., Prakken, A.B. and Van Der Net, J. (2003) Aerobic exercise capacity in patients with juvenile dermatomyositis. Jeuvenile Rheumatology, 30, 1075-1080.
[17]	Stephens, S., Feldman, B.M., Bradley, N., Schneiderman, J., Wright, V., Singh-Grewal, D., et al. (2008) Feasibility and effectiveness of an aerobic exercise program in children with fibromyalgia: Results of a randomized controlled pilot trial. Arthritis Rheumatology, 15, 1399-1406. doi:10.1002/art.24115
[18]	Prasad, S. and Cerny, F. (2002) Factors that influence adherence to exercise and their effectiveness: Application to cystic fibrosis. Pediatric Pulmonology, 34, 66-72. doi:10.1002/ppul.10126
[19]	Klijn, P., Oudshoorn, A., van der Ent, C., van der Net, J., Kimpen, J. and Helders, P. (2004) Effects of anaerobic training in children with cystic fibrosis: A randomized controlled study. Chest, 125, 1299-1305. doi:10.1378/chest.125.4.1299
[20]	Orenstein, D., et al. (2004) Strength vs. aerobic training in children with cystic fibrosis: A randomized controlled trial. Chest, 126, 1204-1214. doi:10.1378/chest.126.4.1204
[21]	Selvadurai, H., Blimkie, C., Meyers, N., Mellis, C., Cooper, P. and Van Aspersen, P. (2002) Randomized controlled study of in-hospital exercise training programs in children with cystic fibrosis. Pediatric Pulmonology, 33, 194-200. doi:10.1002/ppul.10015
[22]	Schneiderman-Walker, J., Pollock, S., Corey, M., Wilkes, D., Canny, G., Pedder, L., et al. (2000) A randomized controlled trial of a 3-year home exercise program in cystic fibrosis. The Journal of Pediatrics, 136, 304-310. doi:10.1067/mpd.2000.103408
[23]	Turchetta, A., Salerno, T., Lucidi, V., Libera, F., Cutrer, R. and Bush, A. (2004) Usefulness of a program of hospital-supervised physical training in patients with CF. Pediatric Pulmonology, 38, 115-118. doi:10.1002/ppul.20073
[24]	Gulman, V., de Meer, K., Backel, H., Faber, J., Berger, R. and Helders, P. (1999) Outpatient exercise training in children with cystic fibrosis: Physiological effects, perceived competence, and acceptability. Pediatric Pulmonology, 28, 39-46. doi:10.1002/(SICI)1099-0496(199907)28:1<39::AID-PPUL7>3.0.CO;2-8
[25]	Verschuren O., Ketelaar, M., Gorter, J.W., Helders, P.J., Uiterwaal, C.S. and Takken, T. (2007) Exercise training program in children and adolescents with cerebral palsy: a randomized controlled trial. Archives of Pediatric Adolescent Medicine, 161, 1075-1081. doi:10.1001/archpedi.161.11.1075
[26]	Van Brussel, M., Takken, T., Uiterwaal, C.S., Pruijs, H.J., Van der Net, J., Helders, P.J., et al. (2008) Physical training in children with osteogenesis imperfecta. Journal of Pediatrics, 152, 111-116. doi:10.1016/j.jpeds.2007.06.029
[27]	Schneiderman-Walker, J., Wilkes, D.L., Strug, L., Lands, LC., Pollock, S.L., Selvadurai, H.C., Hay, J., Coates, A.L. and Corey, M. (2005) Sex differences in habitual physical activity and lung function decline in children with cystic fibrosis. Journal of Pediatrics, 147, 321-326. doi:10.1016/j.jpeds.2005.03.043
[28]	Wilkes, D.L., Schneiderman, J.E., Nguyen, T., Heale, L., Moola, F., Ratjen, F., Coates, A.L. and Wells, G.D. (2009) Exercise and physical activity in children with cystic fibrosis. Paediatric Respiratory Reviews, 10, 105-109. doi:10.1016/j.prrv.2009.04.001
[29]	Kahn, E.B., Ramsey, L.T., Brownson, R.C., Heath, G.W., Howze, E.H., Powell, K.E., et al. (2002) The effectiveness of interventions to increase physical activity: A systematic review. American Journal of Preventative Medicine, 4, 73-107. doi:10.1016/S0749-3797(02)00434-8
[30]	Rhodes, R.E. and Pfaeffli, L.A. (2009) Mediators of physical activity behaviour change among adult non-clinical populations: A review update. Annals of Behavioral Medicine, 37, S85.
[31]	Medical Research Council (MRC). (2008) Developing and evaluating complex interventions: New guidance. London.
[32]	Moola, F., Faulkner, G. and Schneiderman, J. “No time to play”: Perceptions toward physical activity in youth with cystic fibrosis (CF). Adapted Physical Activity Quarterly, In Press.
[33]	Moola, F.J., Faulkner, G., Kirsh, J.A, and Schneiderman, J. (2011) Developing exercise interventions for children with cystic fibrosis and congenital heart disease: Learning from their parents. Psychology of Sport and Exercise, 12, 599-608.doi:10.1016/j.psychsport.2011.07.001
[34]	Glaser, B.G. and Strauss, A.L. (1967) The discovery of grounded theory. Aldine, Chicago.
[35]	Charmaz, C. (2003) Grounded theory in the 21st century. In: Denzin, N. and Lincoln, Y., Eds., The Landscape of Qualitative Research: Theories and Issues (2nd Edition), Sage, London, 507-530.
[36]	Weed, M. (2009) Research quality considerations for grounded theory research in sport and exercise psychology. Psychology of Sport and Exercise, 10, 502-510. doi:10.1016/j.psychsport.2009.02.007
[37]	Swisher, A. and Erickson, M. (2008) Perceptions of physical activity in a group of adolescents with cystic fibrosis. Cardiopulomonary Physical Therapy Journal, 19, 103-113.
[38]	Moola, F., Faulkner, G., Kirsh, J. and Kilburn, J. (2008) Physical activity and sport participation in youth with congenital heart disease: Perceptions of children and parents. Adapted Physical Activity Quarterly, 25, 49-70.
[39]	Lunt, D., Briffa, K. and Ramsay, J. (2003) Physical activity levels of adolescents with congenital heart disease. Australian Journal of Physiotherapy, 49, 43-50.
[40]	Bar-Mor, G., Bar-Tal, Y., Krulik, T. and Zeevi, B. (2000) Self-efficacy and physical activity in adolescents with trivial, mild, or moderate congenital cardiac malformations. Cardiology in the Young, 10, 561-566. doi:10.1017/S1047951100008829
[41]	Golan, M. (2006) Parents as agents of change in childhood obesity from research to practice. International Journal of Pediatric Obesity, 1, 66-76. doi:10.1080/17477160600644272
[42]	Golan, M., Kaufman, V. and Shahar, D. (2006) Childhood obesity treatment: Targeting parents exclusively v. parents and children. British Journal of Nutrition, 95, 1008-1015. doi:10.1079/BJN20061757
[43]	Nader, P., et al. (1989) A family approach to cardiovascular risk reduction: Results from the San Diego health project. Health Education, 16, 229-244. doi:10.1177/109019818901600207
[44]	Smith, B. and Sparkes, A. (2008) Changing bodies, changing narratives and the consequences of tellability: A case study of becoming disabled through sport. Sociology of Health & Illness, 30, 217-236. doi:10.1111/j.1467-9566.2007.01033.x
[45]	] Wilson, H. and Hutchinson, S. (1996). Methodological mistakes in grounded theory. Nursing Research, 45, 122-124.
[46]	Gruber, W., Orenstein, D., Braumann, K. and Huls, G. (2008) Health-related fitness and trainability in children with cystic fibrosis. Pediatric Pulmonology, 43, 953-964. doi:10.1002/ppul.20881
[47]	Loughlan, C. and Mutrie, N. (1995) Conducting an exercise consultation: Guidelines for health professionals. Journal of the Institute of Health Education, 33, 78-82.
[48]	Bandura, A. (1986) Social foundations of thought and action: A social cognitive theory. Prentice Hall Inc, Englewood Cliffs.
[49]	Abraham, C. and Michie, S. (2008) A taxonomy of behavior change techniques used in interventions. Health Psychology, 27, 379-387. doi:10.1037/0278-6133.27.3.379
[50]	aranowski, T., Anderson, C. and Carmack, C. (1998) Mediating variable framework in physical activity interventions. How are we doing? How might we do better? American Journal of Preventative Medicine, 15, 266-297.
[51]	Lewis, B.A., Marcus, B., Pate, R.R. and Dunn, A.L. (2002) Psychosocial mediators of physical activity behavior among adults and children. American Journal of Preventive Medicine, 23, 26-35. doi:10.1016/S0749-3797(02)00471-3
[52]	Rhodes, R.E. and Pfaeffli, L.A. (2009) Mediators of physical activity behaviour change among adult non-clinical populations: A review update. Annals of Behavioral Medicine, 37, s85.
[53]	Rhodes, R.E., Naylor, P.-J. and McKay, H.A. (2010) Pilot study of a family physical activity planning intervention among parents and their children. Journal of Behavioral Medicine, 33, 91-100. doi:10.1007/s10865-009-9237-0
[54]	Stake, R. (2000) Case studies. In: Denzin, N. and Lincoln, Y., Eds., The Handbook of Qualitative Research, Sage, Thousand Oaks, 236-247.
[55]	Faulkner, G. and Biddle, G. (2004) Physical activity and depression: Considering contextualityand variability. Journal of Sport and Exercise Psychology, 26, 3-18.
[56]	Flyvbjerg, B. (2004) Five misunderstandings about case - study research. In: Seale, G., Gubrium, J. and Silverman, D., Eds., Qualitative Research Practice, Sage, Thousand Oaks, 390-404. doi:10.4135/9781848608191.d33
[57]	Kvale, S. (1996) Interviews: An introduction to qualitative research interviewing. Sage, Thousand Oaks.
[58]	Mason, J. (2002) An introduction to qualitative researching. Sage, Thousand Oaks.
[59]	Faulkner, G., and Sparkes, A. (1999) Exercise as therapy for schizophrenia: An ethnographic study. Journal of Sport and Exercise Psychology, 21, 39-51.
[60]	Hay J.A. and Cairney, J. (2006). Development of the habitual activity estimation scale for clinical research: A systematic approach. Pediatric Exercise Science, 18, 193-202.
[61]	Braun, V. and Clarke, V. (2006) Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101. doi:10.1191/1478088706qp063oa
[62]	Bandura, A. (1997) Self efficacy: The exercise of control. W.H. Freeman and Company, New York.
[63]	Frank, A. (1995) The wounded storyteller: Body, illness, and ethics. The University of Chicago Press, Chicago.
[64]	Smith, B. and Sparkes, A. (2008) Changing bodies, changing narratives and the consequences of tellability: A case study of becoming disabled through sport. Sociology of Health & Illness, 30, 217-236. doi:10.1111/j.1467-9566.2007.01033.x
[65]	Glasscoe, C. and Smith, J. (2008) Through a mother's lens: A qualitative analysis reveals how temporal experience shifts when a boy born preterm has cystic fibrosis. Clinical Child Psychology and Psychiatry, 13, 609-626. doi:10.1177/1359104508096772
[66]	Noom, M., Dekovic, M. and Meeus, W. (1999) Autonomy, attachment and psychosocial adjustment during adolescence: A double edged sword? Journal of Adolescence, 22, 771-783. doi:10.1006/jado.1999.0269
[67]	Conrad, P. (1990) Qualitative research on chronic illness: A commentary on method and conceptual development. Social Science and Medicine, 30, 1257-1263. doi:10.1016/0277-9536(90)90266-U
[68]	Hebestreit, H., Kieser, S., Junge, S., Ballman, M., Habestreit, A. and Schindler, C. (2010) Long term effects of a partially supervised conditioning programme in cystic fibrosis. European Respiratory Journal, 35, 578-583. doi:10.1183/09031936.00062409