This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
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.OldenburgJDolanGLemmGHaemophilia care then, now and in the future201215Suppl 12710.1111/j.1365-2516.2008.01946.x19125934Open DOISearch in Google Scholar
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.PetriniPValentinoLAGringeriAReWMEwensteinBIndividualising prophylaxis in hemophilia: a review2015822374610.1586/17474086.2015.100246525600578Open DOISearch in Google Scholar
Sattoe JNT. Growing up with a chronic condition: challenges for self-management and self-management support. PhD thesis, 2015. Rotterdam: Erasmus University.SattoeJNTPhD thesis,2015RotterdamErasmus UniversitySearch in Google Scholar
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.SchnohrCBacherTAndersenTJoint mobility and physical function of Danish hemophilia patients: a three-wave panel study spanning 24 years2018140424024610.1159/00049378330408776Open DOISearch in Google Scholar
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.ScottMJXiangHHartDPTreatment regimens and outcomes in severe and moderate haemophilia A in the UK: The THUNDER study201925220521210.1111/hae.1361630408835Open DOISearch in Google Scholar
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.HughesTBrok-KristensenMGargeyaY“What more can we ask for?”: a qualitative study of challenges and possibilities for people living with haemophilia202071253610.17225/jhp00151Open DOISearch in Google Scholar
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).2016Available from https://www.esomar.org/what-we-do/code-guidelines (accessed 9 November 2020).Search in Google Scholar
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).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).Search in Google Scholar
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).Available from http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-ethnoganthrop_en.pdf (accessed 3 June 2019).Search in Google Scholar
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).Available from http://www.test-afs-socio.fr/drupal/sites/default/files/congres09/FormCharte.html (accessed 3 June 2019).Search in Google Scholar
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.Available from https://www.theasa.org/downloads/ASA%20ethics%20guidelines%202011.pdf (accessed 3 June 2019.Search in Google Scholar
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.xMichailakisDSchirmerWAgents of their health? How the Swedish welfare state introduces expectations of individual responsibility20103269304710.1111/j.1467-9566.2010.01262.x20649889Open DOISearch in Google Scholar
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.MichailakisDSchirmerWThe responsibility principle. Contradictions of priority-setting in Swedish healthcare201154326728210.1177/0001699311412624Open DOISearch in Google Scholar
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.Von der LippeCFrichJCHarrisASolbraekkeKNTreatment of hemophilia: A qualitative study of mothers’ perspectives201664112112710.1002/pbc.2616727472376Open DOISearch in Google Scholar
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.ParkJ“The worst hassle is you can’t play rugby”: haemophilia and masculinity in New Zealand200041344345310.2307/359492Open DOISearch in Google Scholar
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.De MoerloosePUrbancikWVan Den BergHMRichardsMA survey of adherence to haemophilia therapy in six European countries: results and recommendations2008145931810.1111/j.1365-2516.2008.01843.x18684125Open DOISearch in Google Scholar
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.SavAKingMAWhittyJABurden of treatment for chronic illness: a concept, analysis and review of the literature20151833122410.1111/hex.12046506078123363080Open DOISearch in Google Scholar
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.RechtMKonkleBAJacksonSNeufeldEJRockwoodKPipeSRecognizing the need for personalization of haemophilia patient-reported outcomes in the prophylaxis era20162268253210.1111/hae.1306627581872Open DOISearch in Google Scholar
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.CassisFQuerolFForsythAIorioAHERO International Advisory BoardPsychosocial aspects of haemophilia: a systematic review of methodologies and findings2012183e1011410.1111/j.1365-2516.2011.02683.x22059839Open DOISearch in Google Scholar
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.LambingANicholsCDMunnJEPatient, caregiver, and provider perceptions of pain and pain management in adolescents and young adults with bleeding disorders20172368526010.1111/hae.1329328806860Open DOISearch in Google Scholar
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.McLaughlinJMMunnJEAndersonTLPredictors of quality of life among adolescents and young adults with a bleeding disorder2017156710.1186/s12955-017-0643-7538397228388906Open DOISearch in Google Scholar
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.TagliaferriAFranchiniMRivoltaGFPain assessment and management in haemophilia: A survey among Italian patients and specialist physicians20182457667310.1111/hae.1360030112811Open DOISearch in Google Scholar
Stewart MA, McWhinney IA, Buck CW. The doctor/patient relationship and its effect upon outcome. J R Coll Gen Pract 1979; 29: 77–82.StewartMAMcWhinneyIABuckCWThe doctor/patient relationship and its effect upon outcome1979297782Search in Google Scholar