Parenting a child with haemophilia while living in a non-metropolitan area

1. Haemophilia Foundation Australia. Haemophilia. 2009. Victoria: Haemophilia Foundation Australia.Search in Google Scholar

2. Manco-Johnson MJ, Riske B, Kasper CK. Advances in care of children with hemophilia. Seminars in Thrombosis and Hemostasis 2003; 29: 585-94.10.1055/s-2004-81562614719175Open DOISearch in Google Scholar

3. Banis S, Suurmeijer T, van Peer DR. Child-rearing practices toward children with hemophilia: The relative importance of clinical characteristics and parental emotional reactions. Family Relations 1999; 48: 207-13.10.2307/585085Open DOISearch in Google Scholar

4. Thornburg CD. Prophylactic factor infusions for patients with hemophilia: Challenges with treatment adherence. Journal of Coagulation Disorders 2009; 2(1): 9-14.Search in Google Scholar

5. Ljung RC. Intracranial haemorrhage in haemophilia A and B. Br J Haematol 2008; 140 (4):378-84.10.1111/j.1365-2141.2007.06949.x18081890Search in Google Scholar

6. Coppola A, Cerbone AM, Mancuso G, et al. Confronting the psychological burden of haemophilia. Haemophilia 2011; 17: 21-7.10.1111/j.1365-2516.2010.02280.x20579110Search in Google Scholar

7. Saviolo-Negrin N, Cristante F, Zanon E, et al. Psychological aspects and coping of parents with a haemophilic child: a quantitative approach. Haemophilia 1999; 5: 63-8.10.1046/j.1365-2516.1999.00213.x10215949Search in Google Scholar

8. Thomas S, Herbert D, Street A, et al. Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study. Haemophilia 2007; 13: 633-41.10.1111/j.1365-2516.2007.01454.x17880455Search in Google Scholar

9. Beeton K, Neal D, Watson T, et al. Parents of children with haemophilia - a transforming experience. Haemophilia 2007; 13: 570-9.10.1111/j.1365-2516.2007.01494.x17880446Open DOISearch in Google Scholar

10. Gregory M, Boddington P, Dimond R, et al. Communicating about haemophilia within the family: the importance of context and of experience. Haemophilia 2007; 13: 189-98.10.1111/j.1365-2516.2006.01417.x17286773Search in Google Scholar

11. Wiedebusch S, Pollmann H, Siegmund B, et al. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia 2008; 14: 1014-22.10.1111/j.1365-2516.2008.01803.x18624702Open DOISearch in Google Scholar

12. Mooney TS, Strodl E, Brown SA. Mothers of children with haemophilia: An exploration of their experiences. Brisbane: Queensland University of Technology, 2012.Search in Google Scholar

13. Shaw D, Riley GA. The impact on parents of developments in the care of children with bleeding disorders. Haemophilia 2008; 14: 65-7.10.1111/j.1365-2516.2007.01598.x18070063Search in Google Scholar

14. Steele RG, Forehand R, Armistead L. The role of family processes and coping strategies in the relationship between parental chronic illness and childhood internalising problems. Journal of Abnormal Child Psychology 1997; 25: 83-94.10.1023/A:1025771210350Open DOISearch in Google Scholar

15. Teitel JM, Barnard D, Israels S, et al. Home management of haemophilia. Haemophilia 2004; 10: 118-33.10.1046/j.1365-2516.2003.00853.x14962201Search in Google Scholar

16. Barlow JH, Stapley J, Ellard DR. Living with haemophilia and von Willebrand’s: A descriptive qualitative study. Patient Education and Counselling 2007; 68: 235-42.10.1016/j.pec.2007.06.00617904328Search in Google Scholar

17. George A, Vickers MH, Wilkes L, et al. Working and caring for a child with chronic illness: Barriers in achieving work-family balance. Journal of Management & Organization 2008; 14: 59-72.10.1017/S1833367200003473Open DOISearch in Google Scholar

18. Talaulikar D, Shadbolt B, McDonald A, et al. Health-related quality of life in chronic coagulation disorders. Haemophilia 2006; 12: 633-42.10.1111/j.1365-2516.2006.01358.x17083515Open DOISearch in Google Scholar

19. Williams KA, Chapman MV. Social challenges for children with hemophilia: Child and parent perspectives. Social Work in Health Care 2001; 50: 199-214.Search in Google Scholar

20. Australian Institute of Health and Wellfare. Rural, Remote and Metropolitan Areas (RRMA) Classification. [n.d.] Available from http://www.aihw.gov.au/rural-health-rrma-classification (accessed 17 November 2015).Search in Google Scholar

21. Pritchard AM, Reimer M, Simonson K, et al. Partnerships in specialty care: Exploring rural haemophilia provider resource needs. Australian Journal of Rural Health 2006; 14: 184-9.10.1111/j.1440-1584.2006.00806.x17032293Open DOISearch in Google Scholar

22. Kadir RA, Sabin CA, Goldman E, et al. Reproductive choices of women in families with haemophilia. Haemophilia 2000; 6: 33-40.10.1046/j.1365-2516.2000.00353.x10632739Open DOISearch in Google Scholar

23. Gannoni A, Shute R. Parental and child perspectives on adaptation to childhood chronic illness: A qualitative study. Clinical Child Psychology and Psychiatry 2010; 15: 39-53.10.1177/135910450933843219914942Search in Google Scholar

24. Smith JA. Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology & Health 1996; 11: 261-71.10.1080/08870449608400256Open DOISearch in Google Scholar

25. Eatough V, Smith J. ‘I was like a wild wild person’: Understanding feelings of anger using interpretative phenomenological analysis. British Journal of Psychology 2006; 97: 483-98.10.1348/000712606X9783117018185Open DOISearch in Google Scholar

26. Larkin M, Watts S, Clifton E. Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology 2006; 3: 102-20.10.1191/1478088706qp062oaSearch in Google Scholar

27. Smith JA. Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology 2004; 1: 39-54. Search in Google Scholar

28. Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA (ed.) Qualitative Psychology. A Practical Guide to Research Methods, 2nd edn. London: SAGE Publications Ltd, 2008.Search in Google Scholar

29. Lovibond PF, Lovibond SH. The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behaviour Research and Therapy 1995; 33: 335-43.10.1016/0005-7967(94)00075-UOpen DOISearch in Google Scholar

30. Moosa MYH, Jeenah FY, Kazadi N. Treatment adherence. South African Journal of Psychiatry 2007; 13: 40-5.10.4102/sajpsychiatry.v13i2.26Search in Google Scholar

31. Moerloose PD, Urbancik W, van den Berg M, Richards M. A survey of adherence to haemophilia therapy in six European countries: results and recommendations. Haemophilia 2008; 14: 931-8.10.1111/j.1365-2516.2008.01843.x18684125Search in Google Scholar