References
- Oldenburg J, Dolan G, Lemm G. Haemophilia care then, now and in the future. Haemophilia 2012; 15 Suppl 1: 2–7. doi: 10.1111/j.1365-2516.2008.01946.x.
- Petrini P, Valentino LA, Gringeri A, Re WM, Ewenstein B. Individualising prophylaxis in hemophilia: a review. Expert Rev Hematol 2015; 8(2): 237–46. doi: 10.1586/17474086.2015.1002465.
- Sattoe JNT. Growing up with a chronic condition: challenges for self-management and self-management support. PhD thesis, 2015. Rotterdam: Erasmus University.
- Schnohr C, Bacher T, Andersen T, et al. Joint mobility and physical function of Danish hemophilia patients: a three-wave panel study spanning 24 years. Acta Haematol 2018; 140(4): 240–246. doi: 10.1159/000493783.
- Scott MJ, Xiang H, Hart DP, et al. Treatment regimens and outcomes in severe and moderate haemophilia A in the UK: The THUNDER study. Haemophilia 2019; 25(2): 205–212. doi: 10.1111/hae.13616.
- Hughes T, Brok-Kristensen M, Gargeya Y, et al. “What more can we ask for?”: a qualitative study of challenges and possibilities for people living with haemophilia. J Haem Pract 2020; 7(1): 25–36. doi: 10.17225/jhp00151.
- ICC/ESOMAR international code of market and social research. 2016. Available from https://www.esomar.org/what-we-do/code-guidelines (accessed 9 November 2020).
- The “Frankfurt Declaration” of ethics in social and cultural anthropology. Available from http://www.dgv-net.de/wp-content/uploads/2016/11/DGV_Ethics-Declaration_FINAL_1.11.2016-1.pdf (accessed 3 June 2019).
- Research Ethics in Ethnography/Anthropology in Europe. Available from http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-ethnoganthrop_en.pdf (accessed 3 June 2019).
- Principes généraux de la pratique de la sociologie (General principles of the practice of sociology). Available from http://www.test-afs-socio.fr/drupal/sites/default/files/congres09/FormCharte.html (accessed 3 June 2019).
- Association of Social Anthropologists of the UK and the Commonwealth (ASA) Ethical Guidelines for good research practice. Available from https://www.theasa.org/downloads/ASA%20ethics%20guidelines%202011.pdf (accessed 3 June 2019.
- Michailakis D, Schirmer W. Agents of their health? How the Swedish welfare state introduces expectations of individual responsibility. Sociol Health Illn 2010; 32(6): 930–47. doi: 10.1111/j.1467-9566.2010.01262.x
- Michailakis D, Schirmer W. The responsibility principle. Contradictions of priority-setting in Swedish healthcare. Acta Sociologica 2011; 54(3): 267–282. doi: 10.1177/0001699311412624.
- Von der Lippe C, Frich JC, Harris A, Solbraekke KN. Treatment of hemophilia: A qualitative study of mothers’ perspectives. Pediatr Blood Cancer 2016; 64(1): 121–127. doi: 10.1002/pbc.26167.
- Park J. “The worst hassle is you can’t play rugby”: haemophilia and masculinity in New Zealand. Current Anthropology 2000; 41(3): 443–453. doi: 10.2307/359492.
- De Moerloose P, Urbancik W, Van Den Berg HM, Richards M. A survey of adherence to haemophilia therapy in six European countries: results and recommendations. Haemophilia 2008; 14(5): 931–8. doi: 10.1111/j.1365-2516.2008.01843.x.
- Sav A, King MA, Whitty JA, et al. Burden of treatment for chronic illness: a concept, analysis and review of the literature. Health Expect 2015; 18(3): 312–24. doi: 10.1111/hex.12046.
- Recht M, Konkle BA, Jackson S, Neufeld EJ, Rockwood K, Pipe S. Recognizing the need for personalization of haemophilia patient-reported outcomes in the prophylaxis era. Haemophilia 2016; 22(6): 825–32. doi: 10.1111/hae.13066.
- Cassis F, Querol F, Forsyth A, Iorio A; HERO International Advisory Board. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia 2012; 18(3): e101–14. doi: 10.1111/j.1365-2516.2011.02683.x.
- Lambing A, Nichols CD, Munn JE, et al. Patient, caregiver, and provider perceptions of pain and pain management in adolescents and young adults with bleeding disorders. Haemophilia 2017; 23(6): 852–60. doi: 10.1111/hae.13293.
- McLaughlin JM, Munn JE, Anderson TL, et al. Predictors of quality of life among adolescents and young adults with a bleeding disorder. Health Qual Life Outcomes 2017; 15: 67. doi: 10.1186/s12955-017-0643-7.
- Tagliaferri A, Franchini M, Rivolta GF, et al. Pain assessment and management in haemophilia: A survey among Italian patients and specialist physicians. Haemophilia 2018; 24(5): 766–73. doi: 10.1111/hae.13600.
- Stewart MA, McWhinney IA, Buck CW. The doctor/patient relationship and its effect upon outcome. J R Coll Gen Pract 1979; 29: 77–82.