REFERENCES

Abbott, J., Dodd, M., Bilton, D., & Webb, A. K. (1994). Treatment compliance in adults with cystic fibrosis. Thorax, 49, 115-120.

Abbott, J., Dodd, M., Gee, L., & Webb, K. (2001). Ways of coping with cystic fibrosis: implications for treatment adherence. Disability and Rehabilitation, 23(8), 315-324.

Abbott, J., Dodd, M., & Webb, A. K. (1995). Different perceptions of disease severity and self care between patients with cystic fibrosis, their close companions and physicians. Thorax, 50, 794-796.

Abbott, J., Dodd, M., & Webb, A. K. (1996). Health perceptions and treatment adherence in adults with cystic fibrosis. Thorax, 51, 1233-1238.

Abbott, J., & Gee, L. (1998). Contemporary psychosocial issues in cystic fibrosis: treatment, adherence and quality of life. Disability and Rehabilitation, 20(6/7), 262-271.

Abbott, J., Havermas, T., & Hart, A., (2009). Adherence to the medical regimen: clinical implications of new findings. Current Opinion in Pulmonary Medicine, 15, 597–603.

American Thoracic Society (ATS) (1989). American Lung Association & American Thoracic Society 1989 annual meeting, May 14-17, Cincinnati, Ohio. American Review Respiratory Disease, 139(4 Pt 2):A1-652.

Andersen, J. B., Qvist, J., & Kann, T. (1979). Recruiting collapsed lung through collateral channels with positive end-expiratory pressure. Scandinavian Journal of Respiratory Disease, 60, 260-266.

Anderson, D. H. (1938). Cystic fibrosis of the pancreas and its relation to celiac disease: clinical and pathological study. American Journal of Disease of Childhood, 56, 344-399.

Association of Chartered Physiotherapists in Cystic Fibrosis (ACPCF)/Cystic Fibrosis Trust. (2002). Clinical guidelines for the physiotherapy management of cystic fibrosis. Bromley, UK: Cystic Fibrosis Trust.

Association of Chartered Physiotherapists in Cystic Fibrosis (ACPCF)/Cystic Fibrosis Trust. (2011). Standards of care for good clinical practice for the physiotherapy management of cystic fibrosis. Bromley, UK: Cystic Fibrosis Trust.

Aurora, P., Gassas, A., Ehtisham, S., Whitehead, B., Whitmore, P., Rees, P. G., et al. (2000). The effect of pre-lung transplant clinical status on post transplant survival of children with cystic fibrosis. European Respiratory Journal, 16, 1061-1064.

194

Aurora, P., Gyi, K., & Carby, M. (2007). Transplantation. In M. Hodson, D. Geddes, & A. Bush (Eds.), Cystic Fibrosis (pp. 291-310). London: Hodder Arnold.

Babbie, E. (1979). The practice of social research (3rd ed.). California: Wadsworth,

Badlan, K. (2006). Young people with cystic fibrosis: an insight into their subjective experience. Health Social Care Community, 14(3), 262-270.

Baldwin, D. R., Hill, A. L., Peckham, D. G., & Knox, A. J. (1994). Effect of addition of exercise to chest physiotherapy on sputum expectoration and lung function in adults with cystic fibrosis. Respiratory Medicine, 88, 49-53.

Balfour-Lynn, I. M., & Elborn, J. S. (2007). Respiratory disease: infection. In M. Hodson, D. Geddes, & A. Bush (Eds.), Cystic Fibrosis (pp. 137-158). London: Hodder Arnold.

Bartholomew, L. K., Czyzewski, D. I., Parcel, G. S., Swank, P. R., Sockrider, M. M., Mariotto, M. J., et al. (1997). Self-management of cystic fibrosis: short-term outcomes of the cystic fibrosis family education program. Health Education and Behaviour, 24(5), 652-666.

Bartholomew, L. K., Parcel, G. S., Seilheimer, D. K., Czyzewski, D. I., Spinelli, S. H., & Congdon, B. (1991). Development of a health education program to promote the self-management of cystic fibrosis. Health Education Quarterly, 18(4), 429-443.

Bartholomew, L. K., Seilheimer, D. K., Parcel, G. S., Spinelli, S. H., & Pumariega, A. J. (1988). Planning patient education for cystic fibrosis: application of a diagnostic framework. Patient Education and Counselling, 13, 57-68.

Bartholomew, L. K., Sockrider, M. M., Seilheimer, D. K., Czyzewski, D. I., Parcel, G. S., & Spinelli, S. H. (1993). Performance objectives for the self-management of cystic fibrosis. Patient Education and Counselling, 22, 15-25.

Belkin, R. A., Henig, N. R., Singer, I. G., Chaparro, C., Rubenstein, R. C., et al. (2006). Risk factors for death of patients with cystic fibrosis awaiting lung transplantation. American Journal Respiratory Critical Care Medicine, 17, 659-66.

Benner, P. (1984). From novice to expert. California: Addison-Wesley.

Berg, B. L. (1989). Qualitative research methods for the social sciences. Needham Heights, MS: Allyn and Bacon.

Bernard, R. S., & Cohen, L. L. (2004). Increasing adherence to cystic fibrosis treatment: a systematic review of behaviour techniques. Pediatric Pulmonology, 37, 8-16.

Bilton, D., Dodd, M. E., Abbott, A. J., & Webb, A. K. (1992). The benefits of exercise combined with physiotherapy in the treatment of adults with cystic fibrosis. Respiratory Medicine, 86, 507-511.

195

Bithell, C. B. (1999). Professional knowledge in professional development. Physiotherapy, 85(9), 458-459.

Boe, J., Dennis, J. H., O'Driscoll, B.R., Bauer, T. T., Carone, M., Dautzenberg, B., et al. (2001). European Respiratory Society Guidelines on the use of nebulizers. European Respiratory Journal, 18, 228-42.

Bond, S., & Gerrish, K. (2006). Preparing a research proposal. In K. Gerrish & A. Lacey (eds). The research process in nursing (5th ed). pp. 123-137. Oxford: Blackwell

Bott, J., Blumenthal, S., Buxton, M., Ellum, S., Falconer, C., Garrod, R., et al. (2009). Guidelines for the physiotherapy management of the adult, medical, spontaneously breathing patient. Thorax, 64(Suppl. 1), i1–i51.

Boyatzis, R. (1998). Transforming qualitative information: thematic analysis and code development. Thousand Oaks, California: Sage Publications.

Boynton, P. M., & Greenhalgh, T. (2004). Selecting, designing and developing your questionnaire. British Medical Journal, 328 (7451), 1312-5.

Bradley, J. M, & Moran F. (2008) Physical training for cystic fibrosis. Cochrane Database of Systematic Reviews 2008, Issue 1. Art. No.: CD002768. DOI: 0.1002/ 14651858. CD 002768.pub2.

Bradley, J. M., & Moran, F. (2011). Physical training for cystic fibrosis. Cochrane Database of Systematic Reviews, Issue 1. Art. No.:CD002768. DOI: 10.1002/ 14651858.pub2

Bradshaw, P. L., & Bradshaw, G. (2004). Health policy for health care professionals. London: Sage Publications

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101.

Bryman, A. (1988). Quality and quantity in social research. London: Unwin Hyman.

Bucks, R., Hawkins, K., Skinner, K. T. C., Horn, S., Seddon, P., & Horne, R. (2009). Adherence to treatment in adolescents with cystic fibrosis: the role of illness perceptions and treatment beliefs. Journal of Pediatric Psychology, 34(8), 893-902.

Burnard, P. (1991). A method of analysing interview transcripts in qualitative research. Nurse Education Today, 11, 161-466.

Button, B. M., & Holland, A. (2008). Australian Clinical Practice Guidelines for Physiotherapy in CF: Sydney, Australia, Cystic Fibrosis Australia Publication. website: http://www.thoracic.org.au/physiotherapyforcf.pdf. Retrieved 3rd December 2011.

196

Carr, L., Pryor, J., Smith, A. E., & Partridge, C. (1996). Cystic fibrosis patients’ views and beliefs about chest clearance and exercise – a pilot study. Physiotherapy, 82 (11), 621-626.

Castle, A. (2009). Defining and assessing critical thinking skills for student radiographers, Radiography, 15(1), 70-76.

Castellani, C., et al., (2008). Consensus on the use and interpretation of cystic fibrosis mutation analysis in clinical practice. Cystic Fibrosis, 7, 3:179-96.

Chartered Society of Physiotherapy. (2001). Research ethics and ethics committee. London: Chartered Society of Physiotherapy.

Chartered Society of Physiotherapy. (2005). Core standards of practice. London: Chartered Society of Physiotherapy.

Chartered Society of Physiotherapy. (2007). Checklist for effective physiotherapy service delivery. London: Chartered Society of Physiotherapy.

Chartered Society of Physiotherapy (2010). CSP vision for the future of UK physiotherapy. London: Chartered Society of Physiotherapy.

Chimiel, J. F., Berger, M., & Konstan, M. W. (2002). The role of inflammation in the pathophysiology of CF lung disease. Clinical Review Allergy Immunology, 23, 5-27.

Christian, B. J. (2007). Building life skills for children with cystic fibrosis: effectiveness of an intervention. Nursing Research, 55(5), 300.

Coakley, R. D., & Boucher, R. C. (2007). Pathophysiology: epithelial cell biology and ion channel function in the lung, sweat gland and pancreas. In M. Hodson, D. Geddes, & A. Bush (Eds.), Cystic Fibrosis (pp. 59-68). London: Hodder Arnold.

Coffey, A., & Atkinson, P. (1996). Making sense of qualitative data analysis: complementary strategies. Thousand Oaks CA: Sage.

Cohen, L., Manion, L., & Morrison, K. (2011). Research methods in education (7th

ed.). London: Routledge.

Collins Dictionary of Medicine. (2006). Canada: Harpercollins Publishers Ltd.

Congleton, J., Hodson, M. E., & Duncan-Skingle, F. (1996). Quality of life in adults with cystic fibrosis. Thorax, 51(9): 936–940.

Consumers for Ethics in Research (CERES). (1994). Spreading the word on research on patient information: how can we get it better. London: Consumers for Ethics in Research.

Conway, S. P., Pond, M. N., Hamnett, T., & Watson, A. (1996). Compliance with treatment in adult patients with cystic fibrosis. Thorax, 51, 29-33.

197

Cooke, L., Myers, L. B., & Deraksham, N. (2003). Adherence, repressive coping and denial in asthma patients. Psychology, Health and Medicine, 8, 35- 44.

Couchman, W., & Dawson, J. (1990). Nursing and health-care research: the use and applications of research for nurses and other health care professionals. London: Scutari.

Cowland , Yorke, & Carr, (2009). Understanding adolescents adherence to their cystic fibrosis treatment. Retrieved June 10, 2009. from Cystic Fibrosis World News website: http://www.cfww.org/pub/english/cfwnl/12/672/Understanding_adolescents % E2% 80%99_adherence_to_their_cystic_fibrosis_treatments.

Cystic Fibrosis Trust (2000). National Cystic Fibrosis Database. Bromley, UK: Cystic Fibrosis Trust.

Cystic Fibrosis Trust (2001). Standards of clinical care of children and adults with cystic fibrosis in the UK. Bromley, UK: Cystic Fibrosis Trust.

Cystic Fibrosis Trust. (2004a). Pseudomonas aeruginosa infection in people with Cystic Fibrosis. Suggestions for Prevention and Infection Control. 2 nd ed. Bromley, UK: Cystic Fibrosis Trust

Cystic Fibrosis Trust (2004b). The burkholderia cepacia complex: suggestions for prevention and infection control. (2nd ed). UK, Bromley: Cystic Fibrosis Trust.

Cystic Fibrosis Trust. (2008). Methicillin-resistant s taphylococcus aureus (MRSA). Bromley, UK: Cystic Fibrosis Trust.

Cystic Fibrosis Trust. (2011a). Standards for the clinical care of children and adults with cystic fibrosis in the U.K. 2nd ed. Bromley, UK: Cystic Fibrosis Trust.

Cystic Fibrosis Trust. (2011b). UK CF Registry, 2009. Bromley, UK: Cystic Fibrosis Trust.

Czajkowski, D. R., & Koocher, G. P. (1986). Predicting medical compliance among adolescents with cystic fibrosis. Health Psychology, 5, 297-305.

Czajkowski, D. R., & Koocher, G. P. (1987). Medical compliance and coping with cystic fibrosis. Journal of Child Psychiatry, 28(2), 311-319.

Daniels, T. (2010). Physiotherapeutic management strategies for the treatment of cystic fibrosis in adults. Journal of Multidisciplinary Healthcare, 3, 201-12.

Daniels, T., Goodacre, L., Sutton, C., Conway, S., & Peckham, D. (2011). Accurate assessment of adherence: self and clinician report versus electronic monitoring of nebulizers. Chest, Pre-published online February 17, 2011 DOI 10.1378/chest.09-3074. Retrieved April 5, 2011, from Chest website: http://chestjournal.chestpubs.org/ content/early/2011/02/16/chest.09-3074

198

Dawson, S., & Sausman, C. (Eds.). (2005). Future health organisations and systems. London: Palgrave Macmillan.

DeLambo, K., Ievers-Landis, C., Drotar, D., & Quittner, A. L. (2004). The association of observed family relationship quality and problem-solving skills to treatment adherence in adolescents with cystic fibrosis. Journal of Pediatric Psychology, 29, 343-353.

Denzin, K. D., & Lincoln, Y. S. (2005). The handbook of qualitative research. Thousand Oaks, California: Sage Publications

Department of Health. (2001a). Governance arrangements for NHS Research Ethics Committees. London: Department of Health.

Department of Health. (2001b). The expert patient: chronic disease management in the 21st century. London: Department of Health.

Department of Health (2005). Self care – a real choice. London: Department of Health.

Department of Heath. (2006a). Our health, our care, our say. London: Department of Health.

Department of Health. (2006b). Integrated governance handbook: a handbook for executives and non-executives in healthcare organizations. London: Department of Health.

Department of Health. (2007). Best research for best health: a new national research strategy. London: Department of Health.

Department of Health (2008). High quality care for all: NHS next stage review final report. London: Department of Health.

Department of Health (2010). Equity and excellence: liberating the NHS. London: Department of Health.

Department of Health (2010a). Liberating the NHS: legislative framework and next steps. Department of Health: London.

Department of Health (2010b). NHS 2010 - 2015: from good to great. Preventative, people-centered, productive. Department of Health: London.

Department of Health (2011). Health and social care bill 2011. London: Department of Health.

Dewey, A. (2006). An investigation of practical management of cachexia in advanced cancer patients. Internal unpublished thesis, University of Portsmouth.

Dey, I. (1993). Qualitative data analysis: a user friendly guide for social scientists. London: Routledge.

199

DiMatteo, M. R., Giordani, P. J., Lepper, H. S., & Croghan, T. W. (2002). Patient adherence and medical treatment outcomes: a meta-analysis. Medical Care, 40, 794-811.

Dodd, M. E., & Prasad, S. A. (2005). Physiotherapy management of cystic fibrosis. Chronic Respiratory Disease, 2, 139-149.

Dodd, M. E., & Webb, A. K. (2000). Understanding non-compliance with treatment in adults with cystic fibrosis. Journal of the Royal Society of Medicine, 38(93), 2-8.

Dodge, J. A., Lewis, P. A., Stanton, M., & Wilsher J. (2007). Cystic fibrosis mortality and survival in the UK: 1947-2003. European Respiratory Journal, 29, 522-6.

Downs, J. A., Roberts, C. M., Blackmore, A. M., Le Souel, P. N., & Jenkins, S. C. (2006). Benefits of an educational programme on the self-management of aerosol and airway clearance treatments for children with cystic fibrosis. Chronic Respiratory Disease, 3, 10-27.

Dreeben, O. (2010). Patient education in rehabilitation. Sudbury, MA: Jones and Bartlett.

Dwyer, T. J., Alison, J. A., McKeough, Z. J., Daviskas, E., & Bye, P. T. (2010). Effects of exercise on respiratory flow and sputum properties in patients with cystic fibrosis. Chest 2011 Apr;139(4):870-7. Epub 2010 Sep 9.

Edenborough, F. P., Borgo, G., Knoop, C., Lannefors, L., Mackenzie, W. E., Madge, S., et al. (2008). Guidelines for the management of pregnancy in women with cystic fibrosis. Journal of Cystic Fibrosis, 7(Suppl. 1), S2-32.

Effing, T., Monninkhof, E. E. M., van der Valk, P. P., Zielhuis, G. G. A., Walters, E. H., van der Palen, J. J. et al. (2007). Self-management education for patients with chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews, Issue 4. Art. No.: CD002990. DOI: 10.1002/14651858.CD002990.pub2.

Elborn, J. S., Shale, D. J., & Britton, J. R. (1991). Cystic fibrosis: current survival and population estimates to the year. Thorax, 46, 881-5.

Elkins, M., Jones A., & van der Schans, C. P. (2009). Positive expiratory pressure physiotherapy for airway clearance in people with cystic fibrosis. Cochrane Database of Systematic Reviews, Issue 2. Art. No.:CD003147. DOI:10.1002/14651858. pub3

Field, P. A., & Morse, J. M. (1985). Nursing research: the application of qualitative approaches. London: Croom Helm.

Flume, P. A., Robinson, K. A., O'Sullivan, B., Finder, JD., Vender, R. L., Willey-Courand D. B., et al. (2009). Cystic fibrosis pulmonary guidelines: airway clearance therapies. Respiratory Care, 54, 522-537.

Fox, D. J. (1982). Fundamentals of research in nursing (4th ed.). Norwalk, New Jersey: Appleton-Century-Crofts.

200

Gee, L., Abbott, J., Conway, S., Etherington, C., & Webb, A. K. (2000). Development and validation of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis. Thorax, 55(11), 946-954.

General Medical Council. (2002). Research: the role and responsibilities of doctors. London: General Medical Council.

Gerrish, K. (2006). Evidence based practice, In K. Gerrish & A. Lacey (Eds), The Research Process in Nursing (pp. 491-505). Oxford: Blackwell Publishing.

Gibson, P. G., Coughlan, J., Wilson, A. J., Abramson, M., Bauman, A., Hensley, M. J., et al. (2002b). Self-management education and regular practitioner review for adults with asthma. (Cochrane Review). The Cochrane Library, Issue 3. Oxford: Update software.

Gibson, R. L., Emerson, J., McNamara, S., Burns, J. L., Rosenfeld, M., Yunker. A. et al. (2003). Significant microbiological effect of inhaled tobramycin in young children with cystic fibrosis. American Journal of Respiratory Critical Care Medicine, 167, 841–9.

Gibson, P. G., Powell, H., Coughlan, J., Wilson, A. J., Hensley, M. J., Abramson, M., et al., (2002a). Limited (information only) patient education programme for adults with asthma. (Cochrane Review). The Cochrane Review, Issue 3. Oxford: Update software.

Glaser, B.G., & Strauss, A. L. (1967). The discovery of grounded theory. New York: Aldine.

Glasscoe, C. A., & Quittner, A. L. (2008). Psychological interventions for cystic fibrosis. Cochrane Database of Systematic Reviews, Issue 3. Art. No.:D003148. DOI: 10.1002/14651858.pub2.

Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112.

Greenwood, J. (1984). Nursing research: a position paper. Journal of Advanced Nursing, 9, 77-82.

Griva, K., Myers, L., & Newman, S. N. (2000). Illness perceptions and self-efficacy beliefs in adolescence and young adults with insulin dependant diabetes mellitus. Psychology and Health, 15, 733-750.

Groth, S., Stavanger, G., Dirksen, H., Andersen, J. B., Falk, M., & Kelstrup, M. (1985). Positive expiratory pressure (PEP-mask) physiotherapy improves ventilation and reduces volume of trapped gas in cystic fibrosis. Clinical Respiratory Physiology, 21,:339-343

201

Gudas, L. J., Koocher, G. P., & Wypij, D. (1991). Perceptions of medical compliance in children and adolescents with cystic fibrosis. Developmental and Behavioural Pediatrics, 12, 236–242.

Harris, M., Williams, A. M., Dennis, S. M., Zwar, A., & Powell-Davies, G. (2008). Chronic disease self-management: implementation with and within Australian general practice. The Medial Journal of Australia, 189 (10 Suppl.): S17-S20.

Hart, E., & Bond, M. (1995). Action research for health and social care. Buckingham, UK: Open University Press.

Hart, E., & Bond, M. (1996). Making sense of action research through the use of typology. Journal of Advanced Nursing, 23, 152-159.

Health Professions Council’s Standards of Proficiency for Physiotherapists (2007). London: Health Professions Council.

Henry, B., Aussage, P., Grosskopf, C., & Goehrs, J. M. (2003) Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Quality of Life Research, 12(1):63-76.

Heron, J. (1996). Co-operative inquiry: research into the human condition. London: Sage.

Hill, A., & Spittlehouse, C. (2001). What is critical appraisal? Evidence-Based-Medicine, 3, 2.

Hodson, M. E. (2000). Treatment of cystic fibrosis in adults. Respiration, 67(6), 595-607.

Hodson, M. E., Geddes, D., & Bush, A. (2007). Cystic Fibrosis. London: Hodder Arnold

Hodson, M. E., Madden, B. P., Steven, M. H., Tsang, V. T., & Yacoub, M. H. (1991). Non-invasive mechanical ventilation for cystic fibrosis patients a potential bridge to transplantation. European Respiratory Journal, 4, 524-7.

Hodson, M. E., Panketh, A. L., & Batten (1984). Aerosol carbenicillin and gentamycin treatment of pseudomonas aeurinosa infections in cystic fibrosis. Lancet, 2, 1137-39.

Holloway, D. G. (1994). Further education teachers’ development: a post-technocratic model. Teachers Development, 2, 46-57.

Holloway, I., & Wheeler, (2010). Qualitative research in nursing and health care (3rd

ed.). Oxford: Wiley-Blackwell Publishing.

Holman, H., & Lorig, K. (2004). Patient self-management: a key to effectiveness and efficiency in care of chronic disease. Public Health Reports, 119(3), 239-243.

202

Hudson, B. (1999). The changing role of social care. Jessica Kingsley Publishers.

Hugman, R. (1991). Power in the caring professions. Basingstoke: MacMillan Education Ltd.

Huyard, C. (2008). Exploring one’s own human condition: adults affected by cystic fibrosis. Qualitative Health Research, 18, pp. 535 – 534.

Ievers, C. E., Brown, R. T., Drotar, D., Caplan, D., Pishevar, B. S. & Lambert, R. G. (1999). Knowledge of physicians prescriptions and adherence to treatment among children with cystic fibrosis and their mothers. Developmental and Behavioural Pediatrics, 20, 335-343.

Ilhan, I., Starumirov, O., Bendenb, C., Kestenholz a , P., Hofer b , M., Boehler b , A., et al. (2012). Lung tansplantation for cystic fibrosis: a single center experience of 100 consecutive cases. European Journal of Cardiothoracic Surgery, 41(2): 435-440. doi: 10.1016/j.ejcts.2011.06.017 First published online: July 28, 2011.

International Physiotherapy Group for Cystic Fibrosis (IPGCF). (2009). Physiotherapy in the Treatment of Cystic Fibrosis: from infant to adult (4th ed.). s. l.: International Physiotherapy Group for Cystic Fibrosis.

Ireland, C. (2003). Adherence to physiotherapy treatment and quality of life for adolescents and adults with cystic fibrosis. Physiotherapy, 89(7), 397-407.

Johnson, M., & Long, T. (2006). Research Ethics. In K. Gerrish, & A. Lacey (Eds.), The Research process in nursing, (pp. 31-41). Oxford: Blackwell Publishing.

Jolley, M. J. (2010). Introducing research and evidence based practice for nurses. Harlow: Pearson.

Kemmis, S., & McTaggart, R. (1981). The action research planner. Geelong: Deakin University Press, Victoria.

Kettler, L. J., Sawyer, S. M., Winefield, H. R., & Greville, H. W. (2002). Determinants of adherence in adults with cystic fibrosis. Thorax, 57, 459-464.

Knowles, M. (1989). The making of an adult educator. San Francisco: Jossey-Bass Publishers.

Kolb, D. (1984). Experiential learning: experience as a source of learning and development. New Jersey, USA: Prentice Hall.

Kolbe, J. (2007). Adult Cystic Fibrosis. In Evidence-based Respiratory Medicine. P. G. Gibson, M. Abramson, R. Wood-Baker, J. Volmink, M. Hensley, & U. Costabel (Eds.), Evidence-based Respiratory Medicine. (pp. 54-71). Oxford: Blackwell Publishing Ltd.

Koocher, G. P., McGrath, M. L., Gudas, L. J. (1990). Typologies on non- adherence in cystic fibrosis. Developmental and Behavioural Paediatrics. 11(6), 353-358.

203

Konstan, M. W., Stern, R. C., & Doershuk, C. F. (1994). Efficacy of the Flutter device for airway mucus clearance in patients with cystic fibrosis. Journal of Pediatrics, 124(5 Pt 1):689–693.

Kralik, D., Koch, K., Price, H., & Howard, N. (2004). Chronic illness: taking action to create order. Journal of Clinical Nursing, 12(2), 259-267.

Krippendorff, K. (1980). Content analysis: an introduction to its methodology. London: Sage Publications Ltd.

Lannefors, L., & Wollmer, P. (1992). Mucus clearance with three chest physiotherapy regimes in cystic fibrosis: a comparison between postural drainage, PEP and physical exercise. European Respiratory Journal, (2)5, 748-53.

Lask, B. (1994). Non-adherence to treatment in cystic fibrosis. Journal of the Royal Society of Medicine, 87(Suppl. 21), 25-27.

Lee, T., & Southern, K. W. (2007). Topical cystic fibrosis transmembrane conductance regulator gene replacement for cystic fibrosis-related lung disease. Cochrane Database Systematic Review, vol 2, pp. CD005599.

Leventhal, H. (1993). Theories of compliance, and turning necessities into references: application to adolescent health action. In N. A. Krasnegor, L. Epstein, S. B. Johnson, & S. J. Yaffe (Eds.), Developmental aspects of health compliance behaviour (pp. 91–124). New Jersey: Lawrence Erlbaum Associates.

Lewin, K. (1946). Action research and minority problems. In G.W. Lewin (Ed.) (1948). Resolving social conflicts: selected papers on group dynamics by Kurt Lewin. (pp. 230 -236). New York: Harper and Brothers.

Lewin, K. (1947). Frontiers in group dynamics 11: channels of group like, social planning and action research. Human Relations, 1, 143-154.

Lincoln, Y. (2001). Engaging sympathies: relationships between action research and social constructivism. In P. Reason, & H. Bradbury (Eds.), Action research: participative enquiry and practice (pp. 124-132). London: Sage.

Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage Publications.

Llorente R. P. A., Bousono, C. G., & Martin, J. J. D. (2008). Treatment compliance in children and adults with cystic fibrosis. Journal of Cystic Fibrosis, 7(5), 359-367.

Lorig, K. R., Sobel, D. S., Ritter, P. L., Laurent, D., & Hobbs, M. (2001). Effect of a self-management program on patients with chronic disease. Effective Clinical Practice. 4(6), 256-262.

204

Main, E., Prasad, A., & van der Schans, C. (2009). Conventional chest physiotherapy for cystic fibrosis compared to other airway clearance techniques for cystic fibrosis. Cochrane Database of Systematic Reviews, Issue 1. Art. No.CD002011.D01. 10.1002/ 14651858.pub2.

Marks, J. H. (2007). Airway clearance devices in cystic fibrosis. Pediatric Respiratory Reviews, 8(1), 17-23.

Marshall, C., & Rossman, B. (2006). Designing qualitative research. London: Sage Publications.

Mason, D. J., Backer, B. A., & Georges, A. (1991). Toward a feminist model for the political empowerment of nurses. Image - The Journal of Nursing Scholarship, 23(2), 72-77.

Masterson, T. L., Wildman, B.G., Newberry, B. H., & Omlor, G. D. (2011). Impact of age and gender on adherence to infection control guidelines and medical regimens in cystic fibrosis. Pediatric Pulmonology, (46)3, 295–301.

Mayo, E. (1949). Hawthorne and the Western Electric Company: the social problems of an industrial civilisation. Routledge: London.

McIlwaine, P. M., Davidson, A. G. F., Wong, L. T. K., & Pirie, G. (1991). The effect of chest physiotherapy by postural drainage and autogenic drainage on oxygen saturation in cystic fibrosis. Pediatric Pulmonology, (Suppl 6), 291.

McKenna, H., Hasson, F., & Keeney, S. (2006). Surveys. In K. Gerrish, & A. Lacey (Eds.), The research process (pp. 260-273). Oxford: Blackwell Publishing.

Meyer, J. (2000). Using qualitative methods in health related action research. British Medical Journal, 320, 178-81.

Meyer, J. (2006). Action Research. In K. Gerrish, & A. Lacey (Eds.), The research process in nursing (pp. 274-288). Oxford: Blackwell Publishing.

Miles, B., & Huberman, M. (1994). Qualitative data analysis. Thousand Oaks, California: Sage Publications.

Miller, S., Hall, D.O., Clayton, C. B., & Nelson, R. (1995). Chest physiotherapy in cystic fibrosis: a comparative study of autogenic drainage and the active cycle of breathing techniques with postural drainage. Thorax. 50(2):165–169.

Miller, M. R., Hankinson, J., Brusasco, V., Burgos, F., Casaburi, R., Coates, A., et al. (2005). Standardisation of spiromety. European Respiratory Journal, 26, 319–338.

Modi, A., Lim, C. S., Yu, N., Gellar, D., Wagner, M. H., & Quittner, A. (2006). A multi-method assessment of treatment adherence for children with cystic fibrosis. Journal of Cystic Fibrosis, 5, (3), 177-185.

205

Modi, A. C., & Quittner, A. L. (2006). Barriers to treatment adherence for children with cystic fibrosis and asthma: what gets in the way? Journal of Pediatric Psychology, 31(8), 846–858.

Moorcroft, A. J., Dodd, M. E., Morris, J., & Webb, A. K., (2004). Individualised unsupervised exercise training in adults with cystic fibrosis: a 1 year randomised controlled trial. Thorax, 59,1074-1080.

Moreau, D. (2002). Patient teaching reference manual. USA: Springhouse Corporation.

Morrison, L., & Agnew, J. (2009). Oscillating devices for airway clearance in people with cystic fibrosis. Cochrane Database of Systematic Reviews. Issue 1. Art. No.: CD006842. DOI: 10.1002/14651858.pub2

Murphy, E., Digwall, R., Greatbatch , D., Parker, S., & Watson, P. (1998). Qualitative research methods in health technology assessment: a review of the literature. Journal of Cystic Fibrosis, 2006, 5(3):177-85.

Murphy-Black, T. (2006). Using questionnaires. In K. Gerrish, & A. Lacey (Eds.), The Research process in nursing, (pp. 367-382). Oxford: Blackwell Publishing.

Myers, L. B., & Horn, S. A. (2006). Adherence to chest physiotherapy in adults with cystic fibrosis. Journal of Health Psychology, 11(6), 915-926.

Myers, L., & Midence, K. (1998). Adherence to treatment in medical conditions. UK: Harwood Academic Publishers.

Myers, L. B., & Myers, F. (1999). The relationship between control beliefs and self-reported adherence in adults with cystic fibrosis. Psychology, Health & Medicine, 4, 387-391.

Newell, R., & Burnard, P. (2011). Research for evidence-based practice in health care. Oxford: Wiley-Blackwell.

Newhouse, P. A., White, F., Marks, J. H., & Homnick, D. N. (1998). The intrapulmonary percussive ventilator and flutter device compared to standard chest physiotherapy in patients with cystic fibrosis. Clinical Pediatrics, 37, 7:427-432.

Nixon, P. A., Orenstein, D. M., Kelsey, S. F., & Doershuk, C. F. (1992). The prognostic value of exercise testing in patients with cystic fibrosis. New England Journal of Medicine, 32(7), 1785-8.

Nunes, V., et al. (2009). Clinical guidelines and evidence review for medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence. London: National Collaborating Centre for Primary Care and Royal College of General Practitioners.

Office of Public Sector Information. (OPSI) (1998). The Data Protection Act 1998. London: The Stationery Office.

206

Oppenheim, A. N. (1992). Questionnaire design, interviewing and attitude measurement. London: Pinter Publishers Ltd.

Oxman, A. D., Cook, D. J., & Guyatt, G. M. (1994). Users’ guides to the medical literature. VI: how to use an overview. Journal of American Medical Association, 272 (17), 1367-1371.

Parahoo, K. (2006). Nursing research: principles, process and issues. Palgrave MacMillan: Basingstoke.

Patterson, J., Wall, M., Berge, J., & Milla, C. (2008). Gender differences in treatment adherence among youth living with cystic fibrosis: development of a new questionnaire. Journal of Cystic Fibrosis, 7:154-164.

Paul, R., & Elder, L. (2006). The miniature guide to critical thinking. California: The Foundation of Critical Thinking.

Pfeffer, P. E., Pfeffer, J. M., & Hodson, M. E. (2003). The psychosocial and psychiatric side of cystic fibrosis in adolescents and adults. Journal of Cystic Fibrosis, 2(29), 61-18.

Piper, A. J., Parker, S., Torzillo, P. J., Sullivan, C. E., & Bye, B. T. (1992). Nocturnal nasal IPPV stabilizes patients with cystic fibrosis and hypercapnic respiratory failure. Chest, 10, 846-50.

Plummer, A., Costall, B., & Torry, B. (2008). Factors affecting adherence in adults with cystic fibrosis. Pharmacy, 18(2), 47-51.

Polit, D., & Beck, C. (2006). Essentials of nursing research: methods, appraisal and utilisation (6th ed). Philadelphia: Lippincott Williams and Wilkins.

Pope, C., & Mays, N. (1995). Introduction to qualitative methods in health and health services research. British Medial Journal, 311: 42-45.

Powell, H., & Gibson, P. G. (2003). Options for self-management education for adults with asthma. Cochrane Database of Systematic Reviews, Issue 3. Art. No.: CD004107 DOI: 10. 1002/14651858.

Price, J. K. (2006). Newborn screening for cystic fibrosis: do we need a second IRT. Archive of Diseases in Childhood, 91, 209-210.

Pryor, J. A. (1999). Physiotherapy for airway clearance in adults. European Respiratory Journal, 14, 1418-1424.

Pryor, J. A., & Prasad, A. (2008). Physiotherapy for respiratory and cardiac problems: adults and paediatrics (4th ed.). Edinburgh: Churchill Livingston.

207

Pryor, J. A., Tannenbaum, E., Scott, S. F., Burgess, J., Cramer, D., Gyi, K., Hodson M.E. (2010). Beyond postural drainage and percussion: airway clearance in people with cystic fibrosis. Journal of Cystic Fibrosis, 9(3), 187-92.

Pryor, J. A., Webber, B. A., Hodson, M. E. (1990). Effect of chest physiotherapy on oxygen saturation in patients with cystic fibrosis. Thorax 45, 77.

Que, C., Cullin, P., & Geddes, D. (2006). Improving rate of decline of FEV1 in young adults with cystic fibrosis. Thorax, 61(2): 155–157.

Quittner, A., Buu, A., Messer, M., Modi, A. C., & Waltrous, M. (2005). Development and validation of the cystic fibrosis questionnaire in the United States: a health-related quality-of-life measure for cystic fibrosis. Chest, 128, 2347-2354.

Quittner, A. L., Drotar, D., Ievers-Landis, C., Seidner, D., Slocum, N., & Jacobsen, J. (2000b). Adherence to medical treatments in adolescents with cystic fibrosis: the development and evaluation of family based interventions. In D. Drotar (Ed.), Promoting adherence to medical treatment in childhood chronic illness: interventions and methods (pp. 383-407). Hillsdale, N J: Lawrence Eillbraum.

Quittner, A. L., Espelage, D. L., Ievers-Landis, C. E., & Drotar, D. (2000a). Measuring adherence to medical treatments in childhood chronic illness: considering multiple methods and sources of information. Journal of Clinical Psychology in Medical Settings, 7, 41–54.

Quittner, A. L., Modi, A. C., Lemanek, K. L., Ievers-Landis, C., & Rapoff, M. A. (2008). Evidence-based assessment of adherence to medical treatments in Pediatric Psychology. Journal of Paediatric Psychology, 33(9), 916–936.

Ramirez, J. C., Patterson, G. A., Winton, T. L., De Hoyos, A. L., Miller, J. D., & Maurer, J. R. (1992). Bilateral lung transplantation for cystic fibrosis. Journal of Thoracic and Cardiovascular Surgery, 103(2), 287-294.

Reason, P. & Bradbury, H. (2001). Action research: participative enquiry and practice. London: Sage.

Richardson, T. E. (Ed.). (1996). Handbook of qualitative research methods for psychology and the social sciences. Leicester: British Psychological Society.

Robinson, K. A., Mckoy, N., Saldanha, I., & Odelola, O. A. (2010). Active cycle of breathing technique for cystic fibrosis. Cochrane Database of Systematic Reviews, Issue 11. Art. No.: CD007862. DOI: 10.1002/14651858.pub2

Robson, C. (2006). Real world research: resource for social scientists and practitioner researchers. (2nd ed.). Oxford: Blackwell.

Rodwell, C. M. (1996). An analysis of the concept of empowerment. Journal of Advanced Nursing, 23(2), 305-13.

208

Rogers, C. (1983) Freedom to learn from the 80’s. Columbus, Ohio: Charles E Merrill

Rogers, W. A. (2005). Ethics and policy in healthcare: status and progress. In S. Dawson & C. Sausman (Eds.), Future health organisations and systems. Basingstoke: Palgrave.

Rubin, H. J., & Rubin, I. S., (1995). Qualitative interviewing: the art of hearing data (2nd ed) . Thousand Oaks, CA: Sage Publications.

Salh, W., Bilton, D., Dodd, M., & Webb, A. K. (1989). Effect of exercise and physiotherapy in aiding sputum expectoration in adults with cystic fibrosis. Thorax, 44, 1006–1008.

Sarantakos, S. (1998). Social research (2nd ed.). New York: Palgrave.

Sawicki, G. S., Sellers, D. E., & Robinson, W. M. (2008). High treatment burden in adults with cystic fibrosis: challenges to disease self-management. Journal of Cystic Fibrosis, 8(2), 91-6.

Sawyer, S. M., & Aroni, R. A. (2005). Self-management in adolescents with chronic illness. What does it mean and how can it be achieved? The Medical Journal of Australia, 183(8), 405-409.

Sawyer, S. M., Rosier, M. J., Phelan, P. D., & Bowes, G. (1995). The self-image of adolescents with cystic fibrosis. Journal of Adolescent Health, 16, 204-208.

Schneiderman-Walker, J., Pollock, S. L., Corey, M., Wilkes, D. D., & Canny, G. J., Pedder, L., et al. (2000). A randomized controlled trial of a 3-year home exercise program in cystic fibrosis. Journal of Pediatrics. 136, 304-10.

Schon, D. (1983). The reflective practitioner: how professionals think in action. New York: Basic Books.

Schon, D. (1987). Educating the reflective practitioner. California: Jossey-Bass Publishers. Schon, D. (1991). The reflective practitioner: how professionals think in action. Aldershot: Arena.

Scottish Intercollegiate Guidelines Network(SIGN) (2008). SIGN 50: a guideline developer’s handbook. Scotland: Edinburgh.

Serra, A., Polese, G., Braggion, C., & Rossi, A. (2002). Non-invasive proportional assist and pressure support ventilation in patients with cystic fibrosis and chronic respiratory failure. Thorax, 57, 50-4.

209

Sharma, R., Florea, V. G., Bolger, A. P., Sharma, R., Doehner, & Coats, A. J. S., et al. (2001). Wasting as an independent predictor of mortality in patients with cystic Fibrosis. Thorax, 56: 746-750.

Shoemaker, M. J., Hurt, H., & Arndt, L. (2008). The evidence regarding exercise training in the management of cystic fibrosis: a systematic review. Cardiopulmonary Physical Therapy Journal, 19(3), 75–83.

Silverman, D. (2005). Doing qualitative research: a practical handbook (2nd ed.). London: Sage.

Sobel, D. S., Lorig, K. R., & Hobbs, M. (2002). Chronic disease self-management programme: In Development to Dissemination. The Permanente Journal, 6(2), 15-22.

Speziale, H.J., & Carpenter, D. D. (2003). Designing data generation and management strategies. In: Qualitative research in nursing (3rd ed.) (pp. 27–41). Philadelpha: Lippincott, Williams, & Wilkins.

Stenhouse, L. (1985). Action research and the teachers responsibility for the educational process. In: J. Rudduck, & D. Hopkins (Eds.), Research as a basis for teaching (pp. 250-260). London: Heinemann Educational.

Taylor, C., & White, S. (2000). Practising reflexivity in health and welfare: making knowledge. Buckingham: Open University Press.

The Kings Fund (2010). How to deliver high-quality, patient-centred, cost-effective care. Consensus solutions from the voluntary sector. London: The Kings Fund

Tod, T. (2006). Interviewing. In K. Gerrish, & A. Lacey (Eds.), The research process in nursing (pp. 337 352). Oxford: Blackwell Publishing.

Topping, A. (2006). The quantitative-qualitative continuum. In K. Gerrish, & A. Lacey (Eds.), The research process in nursing (pp. 157-172). Oxford: Blackwell.

Tsui, C. (1985). Cystic fibrosis locus defined by a genetically linked polymorphic maker. Science, 230, 1054-1057.

University of Portsmouth. (2011). The course supplement to the student handbook for the professional doctorate in health and social care. Unpublished internal document, University of Portsmouth.

van der Schans, C. P., Prasad, A., & Main E. (2000). Chest physiotherapy compared to no chest physiotherapy for cystic fibrosis. Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD001401. DOI: 10.1002/14651858.CD001401.

van der Schans, C., Prasad, A., & Main, E. (2009). Chest physiotherapy compared to no chest physiotherapy for cystic fibrosis. Database of Systematic Reviews. Issue 2, Art. No. CD 001401, D01 10. 1002/14651858.CD001401

210

Volsko, T. A., DiFiore, J., & Chatburn, R.L. (2003). Performance comparison of two oscillating positive expiratory pressure devices: Acapella versus Flutter. Respiratory Care, 48, 124-30.

Wallis, C. (2007). Diagnosis of cystic fibrosis. In M. Hodson, D. Geddes, & A. Bush (Eds.), Cystic Fibrosis (pp. 99-108). London: Hodder Arnold.

Walters, S., & Mehta, A. (2007). Epidemiology of cystic fibrosis. In M., Hodson, D. Geddes, & A. Bush (Eds.), Cystic Fibrosis (pp. 21-48). London: Hodder Arnold.

Warsi, A., Wang, P. S., La Valley, M. P., Avorn, J., & Solomon, D. H. (2004). Self-management education programs in chronic disease: a systematic review and methodological critique of the literature. Archives of Internal Medicine, 164 (15), 1641-1649.

Warwick, W. J., & Hansen, L. G. (1991). . The long-term effect of high frequency chest compression therapy on pulmonary complications of cystic fibrosis. Pediatric Pulmonology, 11(3):265-71.

Waterman, H., Tillen, D., Dickson, R., & de Koning, K. (2001). Action research: a systematic review and guidance for assessment. Health Technology Assessment, (5) 23.

Webb, R., & Tosell, D. (1991). Social issues for carers: a community care perspective. London: Edward Arnold.

Wensing, M. (2000). Evidence-based patient empowerment. Quality in Health Care, 9, 200-201.

White, D., Stiller, K., & Haensal, N. (2007). Adherence of adult cystic fibrosis patients with airway clearance and exercise regimens. Journal of Cystic Fibrosis, 6, 163-170.

Willis, E., Miller, R., & Wyn, J. (2001). Gendered embodiment and survival for young people with cystic fibrosis. Social Science and Medicine, 53, 1163-1174.

Willis, J. D., & Campell, L. F. (1992). Exercise Psychology. Leeds: Human Kinetics Publishers.

World Health Organisation Quality of Life (WHOQOL). (1995). the WHOQO 9 Lassessment: position paper from the WHO. Social Science Medical Journal, 41:1403–9.

World Medical Association. World Medical Association Declaration of Helsinki 1964: ethical principles for medical research involving human subjects (amended 2008). Retrieved 11.01.09, from the World Medical Association website: http:// www. wma.net/en/30publications/10policies/b3/17c.pdf

211

Yacoub, M. H., Banner, N. R., Khaghani, A., Fitzgerald, M. Madden, B., Tsang, V., et al., (1990). Heart-lung transplant for cystic fibrosis and subsequent domino heart transplant. Journal of Heart Transplant, 9, 457-467.

Yankaskas, J. R., Marshall, B. C., Sufian, B., Simon, R. H., & Rodman, D. (2004). Cystic fibrosis care: conference report. Chest, 125, 1-39.

Zindani, G. N., Streetman, D. D., Streetman, D. S., & Nasr, S. Z. (2006). Adherence to treatment in children and adolescent patients with cystic fibrosis. Journal of Adolescent Health, 38, 15-17.

212