The physiotherapy consultation: A qualitative study of the experience of parents of infants with cystic fibrosis in Australia

References

• Alsop-Shields L 2002 The parent-staff interaction model of pediatric care. Journal of Pediatric Nursing 17(6): 442–449. 10.1053/jpdn.2002.123526.
   PubMedGoogle Scholar
• Button BM, Wilson C, Dentice R, Cox NS, Middleton A, Tannenbaum E, Bishop J, Cobb R, Burton K, Wood M, et al. 2016 Physiotherapy for cystic fibrosis in Australia and New Zealand: A clinical practice guideline. Respirology 21(4): 656–667. 10.1111/resp.12764.
   PubMed Web of Science ®Google Scholar
• Byczkowski TL, Kotagal UR, Britto MT, Wilmott RW 2004 Perceptions of value of routine care among patients with cystic fibrosis and their families. Pediatric Pulmonology 37(3): 210–216. 10.1002/ppul.10437.
   PubMed Web of Science ®Google Scholar
• Coulter A, Entwistle V, Gilbert D 1999 Sharing decisions with patients: Is the information good enough? British Medical Journal 318(7179): 318–322. 10.1136/bmj.318.7179.318.
   PubMedGoogle Scholar
• Eder D, Fingerson L 2002 Interviewing children and adolescents In: Gubrium JK, and Holstein JA, Eds Handbook of Interview Research, pp. 181-201. London: SAGE.
   Google Scholar
• Edwards DJ, Wicking K, Smyth W, Shields L, Douglas T 2018 Information needs of parents of infants diagnosed with cystic fibrosis: Results of a pilot study. Journal of Child Health Care 22(3): 382–392. 10.1177/1367493518760734.
   PubMed Web of Science ®Google Scholar
• Finlay L 2011 Phenomenology for therapists: Researching the Lived World. Chichester: Wiley-Blackwell.
   Google Scholar
• Higgs J, Paterson M, Kinsella EA 2012 Hermeneutic inquiry: Interpretation and understanding in research and practice. Contemporary Psychotherapy 4: 1–12.
   Google Scholar
• Holland A 2008 Physiotherapy for cystic fibrosis in Australia: A consensus statement. International physiotherapy group for cystic fibrosis, Australian chapter. Endorsed by the Thoracic Society of Australia and New Zealand. https://cfstrong.org.au/wp-content/uploads/2020/12/Physiotherapy_for_Cystic_Fibrosis_in_Australia_A_Consensus_Statement.pdf Accessed 02 March 2020
   Google Scholar
• Hummelinck A, Pollock K 2006 Parents’ information needs about the treatment of their chronically ill child: A qualitative study. Patient Education and Counseling 62(2): 228–234. 10.1016/j.pec.2005.07.006.
   PubMed Web of Science ®Google Scholar
• Jessup M, Douglas T, Priddis L, Branch-Smith C, Shields L, Arest CF 2016 Parental experience of information and education processes following diagnosis of their infant with cystic fibrosis via newborn screening. Journal of Pediatric Nursing 31(3): e233–241. 10.1016/j.pedn.2015.11.010.
   PubMed Web of Science ®Google Scholar
• Jessup M, Parkinson C 2010 “All at sea”: The experience of living with cystic fibrosis. Qualitative Health Research 20(3): 352–364. 10.1177/1049732309354277.
   PubMed Web of Science ®Google Scholar
• Liamputtong P 2013 Research methods in health foundations for evidence based practice. 2nd, South Melbourne: Oxford University Press.
   Google Scholar
• Minichiello V, Aroni R, Timewell E, Alexander L 1995 Interview processes In: In-depth interviewing: principles, techniques, analysis, 2nd, pp. 76–104, Melbourne: Longman Australia.
   Google Scholar
• Petty NJ, Thomson OP, Stew G 2012 Ready for a paradigm shift? Part 1: Introducing the philosophy of qualitative research. Manual Therapy 17(4): 267–274. 10.1016/j.math.2012.03.006.
   PubMedGoogle Scholar
• Reeder J, Morris J 2018 The importance of the therapeutic relationship when providing information to parents of children with long-term disabilities: The views and experiences of UK paediatric therapists. Journal of Child Health Care 22(3): 371–381. 10.1177/1367493518759239.
   PubMed Web of Science ®Google Scholar
• Riekert KA, Eakin MN, Bilderback A, Ridge AK, Marshall BC 2015 Opportunities for cystic fibrosis care teams to support treatment adherence. Journal of Cystic Fibrosis 14(1): 142–148. 10.1016/j.jcf.2014.10.003.
   PubMed Web of Science ®Google Scholar
• Ruseckaite R, Ahern S, Ranger T, Tacey M, Dean J, Gardam M, Bell S, Burke N Australian cystic fibrosis data registry 2018 The Australian cystic fibrosis data registry annual report, 2016. Monash University. Department of Epidemiology and Preventative Medicine. Report No 19. https://www.cysticfibrosis.org.au/getmedia/a3b28200-caeb-4c5a-ad15-98c71a8c7dc8/ACFDR-2016-Annual-Report-Final-Copy-Single-Page-Version.pdf.aspx Accessed 18 Feb 2020
   Google Scholar
• Sawyer SM, Glazner JA 2004 What follows newborn screening? An evaluation of a residential education program for parents of infants with newly diagnosed cystic fibrosis. Pediatrics 114(2): 411–416. 10.1542/peds.114.2.411.
   PubMed Web of Science ®Google Scholar
• Smith J, Cheater F, Bekker H 2013 Parents’ experiences of living with a child with a long-term condition: A rapid structured review of the literature. Health Expectations 18(4): 452–474. 10.1111/hex.12040.
   PubMed Web of Science ®Google Scholar
• Tipping CJ, Scholes RL, Cox NS 2010 A qualitative study of physiotherapy education for parents of toddlers with cystic fibrosis. Journal of Cystic Fibrosis 9(3): 205–211. 10.1016/j.jcf.2010.02.003.
   PubMed Web of Science ®Google Scholar
• Trede F, Loftus S 2010 Hermeneutic research: Exploring human understanding In: Higgs J, Cherry N, Macklin R, Ajjawi R, Eds Researching practice. A discourse on qualitative methodologies, pp. 185. Rotterdam: Sense Publishers.
   Google Scholar
• Van Manen M 1997 Researching lived experience: Human science for an action sensitive pedagogy. 2nd, London, Ont: Althouse Press.
   Google Scholar
• Ziaian T, Sawyer MG, Reynolds KE, Carbone JA, Clark JJ, Baghurst PA, Couper JJ, Kennedy D, Martin AJ, Staugas RE, et al. 2006 Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma. Journal of Paediatrics and Child Health 42(10): 596–600. 10.1111/j.1440-1754.2006.00943.x.
   PubMed Web of Science ®Google Scholar