Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study

1Khair K, Klukowska, Westesson LM, et al. The burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study). Haemophilia 2019; 25(3): 416–23. doi: 10.1111/hae.13736.KhairKKlukowskaWestessonLMThe burden of bleeds and other clinical determinants on caregivers of children with haemophilia (the BBC Study)Haemophilia20192534162310.1111/hae.1373630925018Open DOISearch in Google Scholar

2Teitel JM, Barnard D, Israels S, Lillicrap D, Poon MC, Sek J. Home management of haemophilia. Haemophilia 2004; 10(2): 118–33. doi: 10.1046/j.1365-2516.2003.00853.x.TeitelJMBarnardDIsraelsSLillicrapDPoonMCSekJHome management of haemophiliaHaemophilia20041021183310.1046/j.1365-2516.2003.00853.x14962201Open DOISearch in Google Scholar

3Shaw D, Riley GA. The impact on parents of developments in the care of children with bleeding disorders. Haemophilia 2008; 14: 65–67. doi: 10.1111/j.1365-2516.2007.01598.x.ShawDRileyGAThe impact on parents of developments in the care of children with bleeding disordersHaemophilia200814656710.1111/j.1365-2516.2007.01598.x18070063Open DOISearch in Google Scholar

4Mackett N. Becoming and being mother to a boy with severe haemophilia. Master's thesis, 2014. [Preston]: University of Central Lancashire.MackettNBecoming and being mother to a boy with severe haemophiliaMaster's thesis,2014[Preston]University of Central LancashireSearch in Google Scholar

5Coppola A, Cerbone AM, Mancuso G, et al. Confronting the psychological burden of haemophilia. Haemophilia 2011; 17(1): 21–27. doi: 10.1111/j.1365-2516.2010.02280.x.CoppolaACerboneAMMancusoGConfronting the psychological burden of haemophiliaHaemophilia2011171212710.1111/j.1365-2516.2010.02280.x20579110Open DOISearch in Google Scholar

6Johnson-Laird PN. Mental Models: Towards a Cognitive Science of Language, Inference, and Consciousness. 1983. Cambridge, MA: Harvard University Press.Johnson-LairdPNMental Models: Towards a Cognitive Science of Language, Inference, and Consciousness1983Cambridge, MAHarvard University PressSearch in Google Scholar

7Kleinman, A. Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine and Psychiatry. 1981. Berkeley, CA: University of California Press.KleinmanAPatients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine and Psychiatry1981Berkeley, CAUniversity of California Press10.1525/9780520340848Search in Google Scholar

8Hughes 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 haemophiliaJ Haem Pract202071253610.17225/jhp00151Open DOISearch in Google Scholar

9ICC/ESOMAR international code of market and social research. 2016. Available from https://www.esomar.org/what-we-do/code-guidelines (accessed 9 November 2020).ICC/ESOMAR international code of market and social research2016Available from https://www.esomar.org/what-we-do/code-guidelines (accessed 9 November 2020).Search in Google Scholar

10The “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).The “Frankfurt Declaration” of ethics in social and cultural anthropologyAvailable 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

11Research Ethics in Ethnography/Anthropology in Europe. Available from http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-ethnog-anthrop_en.pdf (accessed 3 June 2019).Research Ethics in Ethnography/Anthropology in EuropeAvailable from http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/ethics-guide-ethnog-anthrop_en.pdf (accessed 3 June 2019).Search in Google Scholar

12Principes 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).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).Search in Google Scholar

13Association 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.Association of Social Anthropologists of the UK and the Commonwealth (ASA) Ethical Guidelines for good research practiceAvailable from https://www.theasa.org/downloads/ASA%20ethics%20guidelines%202011.pdf (accessed 3 June 2019.Search in Google Scholar

14Rice T. The behavioral economics of health and health care. Annu Rev Public Health 2013; 34: 431–47. doi: 10.1146/annurev-publhealth-031912-114353.RiceTThe behavioral economics of health and health careAnnu Rev Public Health2013344314710.1146/annurev-publhealth-031912-11435323297657Open DOISearch in Google Scholar

15Lindvall K, Colstrup L, Loogna K, Wolter I, Grönhaug S. Knowledge of disease and adherence in adult patients with haemophilia. Haemophilia 2010; 16(4): 592–6. doi: 10.1111/j.1365-2516.2009.02189.x.LindvallKColstrupLLoognaKWolterIGrönhaugSKnowledge of disease and adherence in adult patients with haemophiliaHaemophilia2010164592610.1111/j.1365-2516.2009.02189.x20136657Open DOISearch in Google Scholar

16Nilson J, Schachter C, Mulder K, et al. A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia. Haemophilia 2012; 18(3): e120–5.NilsonJSchachterCMulderKA qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophiliaHaemophilia2012183e120510.1111/j.1365-2516.2011.02714.x22171673Search in Google Scholar

17Barlow JH, Stapley J, Ellard DR, Gilchrist M. Information and self-management needs of people living with bleeding disorders: a survey. Haemophilia 2007; 13(3): 264–70. doi: 10.1111/j.1365-2516.2007.01444.x.BarlowJHStapleyJEllardDRGilchristMInformation and self-management needs of people living with bleeding disorders: a surveyHaemophilia20071332647010.1111/j.1365-2516.2007.01444.x17498075Open DOISearch in Google Scholar

18Power T, Jackson D, Weaver, Carter B. Social support for mothers in illness: a multifaceted phenomenon. Contemp Nurse 2011; 40(1): 27–40. doi: 10.5172/conu.2011.40.1.27.PowerTJacksonDWeaverCarterBSocial support for mothers in illness: a multifaceted phenomenonContemp Nurse2011401274010.5172/conu.2011.40.1.2722545904Open DOISearch in Google Scholar

19Simon HA. A behavioral model of rational choice. The Quarterly Journal of Economics 1955; 69(1): 99–118. doi: 10.2307/1884852.SimonHAA behavioral model of rational choiceThe Quarterly Journal of Economics19556919911810.2307/1884852Open DOISearch in Google Scholar

20Spears D. Economic decision-making in poverty depletes behavioral control. The B.E. Journal of Economic Analysis & Policy 2011; 11(1): 1–42. doi: 10.2202/1935-1682.2973.SpearsDEconomic decision-making in poverty depletes behavioral controlThe B.E. Journal of Economic Analysis & Policy201111114210.2202/1935-1682.2973Open DOISearch in Google Scholar

21DeKoven M, Karkare S, Kelley LA, et al. Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States. Haemophilia 2014; 20(4): 541–9. doi: 10.1111/hae.12379.DeKovenMKarkareSKelleyLAUnderstanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United StatesHaemophilia2014204541910.1111/hae.1237924472032Open DOISearch in Google Scholar