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Psychological experiences of mothers of children with severe haemophilia in Iranian culture: A phenomenological study Cover

Psychological experiences of mothers of children with severe haemophilia in Iranian culture: A phenomenological study

Open Access
|Oct 2023

References

  1. Hoyer LW. Haemophilia A. N Engl J Med 1994; 330(1): 38-47. doi: 10.1056/NEJM199401063300108.
  2. Bullinger M, von Mackensen S. Psycho-social determinants of quality of life in children and adolescents with haemophilia—a cross-cultural approach. Clin Psychol Psychother 2008; 15(3): 164-72. doi: https://doi.org/10.1002/cpp.569.
  3. Knobe K, Berntorp E. Haemophilia and joint disease: pathophysiology, evaluation, and management. J Comorb 2011; 1(1): 51-9. doi: 10.15256/joc.2011.1.2.
  4. van Galen KPM, d’Oiron R, James P, et al. A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH. J Thromb Haemost 2021; 19(8): 1883-1887. doi: 10.1111/jth.15397.
  5. Srivastava A, Santagostino E, Dougall A, et al. WFH Guidlines for the Management of Hemophilia, 3rd edition. Haemophilia 2020; 26 (Suppl 6): 1-158. doi: 10.1111/hae.14064.
  6. von der Lippe C, Frich JC, Harris A, Solbrække KN. Treatment of haemophilia: a qualitative study of mothers’ perspectives. Pediatr Blood Cancer 2017; 64(1): 121-127. doi: 10.1002/pbc.26167.
  7. Klassen AF, Gulati S, Granek L, et al. Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res 2012; 21(9): 1595-1605. doi: 10.1007/s11136-011-0072-8.
  8. Schwartz CE, Powell VE, Eldar-Lissai A. Measuring haemophilia caregiver burden: validation of the Haemophilia Caregiver Impact measure. Qual Life Res 2017; 26(9): 2551-62. doi: 10.1007/s11136-017-1586-3.
  9. Poley MJ, Brouwer WB, van Exel N, Tibboel D. Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies. Qual Life Res 2012; 21(5): 849-61. doi: 10.1007/s11136-011-9986-5.
  10. Sales E. Family burden and quality of life. Qual Life Res 2003; 12(1), 33-41. doi: 10.1023/A:1023513218433.
  11. Kotchick BA, Forehand R, Armistead L, Klein K, Wierson M. Coping with illness: Interrelationships across family members and predictors of psychological adjustment. J Fam Psychol 1996; 10(3): 358-370. doi: 10.1037/0893-3200.10.3.358.
  12. Cuesta-Barriuso R, Torres-Ortuño A, Nieto-Munuera J, López-Pina JA. Quality of life, perception of disease and coping strategies in patients with haemophilia in Spain and El Salvador: A comparative study. Patient Prefer Adherence 2021; 15:1817-1825. doi: 10.2147/PPA.S326434.
  13. Khair K, Chaplin S. The impact on parents of having a child with haemophilia. J Haem Pract 2016; 3(2): 4-14. doi: 10.17225/jhp00075.
  14. O’Mahony B, Black C. Expanding haemophilia care in developing countries. Semin Thromb Hemost 2005; 31(5): 561-568). doi: 10.1055/s-2005-922228.
  15. Rambod M, Sharif F, Molazem Z, Khair K. Pain experience in haemophilia patients: a hermeneutic phenomenological study. Int J Community Based Nurs Midwifery 2016; 4(4): 309-319.
  16. Rambod M, Sharif F, Molazem Z, Khair K. Spirituality experiences in haemophilia patients: a phenomenological study. J Relig Health 2019; 58(3): 992-1002. doi: 10.1007/s10943-018-0621-3.
  17. Parviniannasab AM, Rakhshan M, Momennasab M, Soltanian M, Rambod M, Akbarzadeh M. Haemophiliac adolescents’ perspectives of resilience: A qualitative study based on the resilience in illness model. Clin Child Psychol Psychiatry 2020; 25(2): 346-58. doi: 10.1177/1359104519890905.
  18. Moghadam S, Knudsen-Mart C, Mahoney AR. Gendered power in cultural contexts: Part III. Couple relationships in Iran. Family Process 2009; 48(1): 51-54.
  19. Wilde DJ, Murray CD. The evolving self: finding meaning in near-death experiences using Interpretative Phenomenological Analysis. Mental Health, Religion and Culture 2009; 12(3): 223-39. doi: 10.1080/13674670802334910.
  20. Ahmad RS, Sulaiman Z, Nik Hussain NH, Mohd Noor N. Working mothers’ breastfeeding experience: a phenomenology qualitative approach. BMC Pregnancy Childbirth 2022; 22(1): 1-8. doi: 10.1186/s12884-021-04304-4.
  21. Creswell JW. Mapping the field of mixed methods research. Journal of Mixed Methods Research 2009; 3(2): 95-108. doi:10.1177/1558689808330883.
  22. Cheng H, Sit JW, Chan CW, So WK, Choi KC, Cheng KK. Social support and quality of life among Chinese breast cancer survivors: Findings from a mixed methods study. Eur J Oncol Nurs 2013; 17(6): 788-96. doi: 10.1016/j.ejon.2013.03.007.
  23. Young G. Revising the APA Ethics Code. Cham, Switzerland: Springer International Publishing; 2017.
  24. Paley J. Phenomenology as Qualitative Research: A Critical Analysis of Meaning Attribution. New York: Routledge; 2016.
  25. Frijda NH. Moods, emotion episodes, and emotions. In: Lewis M, Haviland JM (eds). Handbook of Emotions. New York: Guilford Press; 1993: 381-403.
  26. Herman JL, Tetrick LE. Problem-focused versus emotion-focused coping strategies and repatriation adjustment. Human Resource Management 2009; 48(1): 69-88. doi: 10.1002/hrm.20267.
  27. Punt MC, Teela L, Fischer K, et al. A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy. Haemophilia 2021; 27(6): e675-82. doi: 10.1111/hae.14396.
  28. Punt MC, Aalders TH, Bloemenkamp KW, et al. The experiences and attitudes of haemophilia carriers around pregnancy: a qualitative systematic review. J Thromb Haemost 2020; 18(7): 1626-36. doi: 10.1111/jth.14825.
  29. Cutler J, Chappell LC, Kyle P, Madan B. Third trimester amniocentesis for diagnosis of inherited bleeding disorders prior to delivery. Haemophilia 2013; 19(6): 904-7. doi: 10.1111/hae.12247.
  30. Rostami A, Ghazinour M, Nygren L, Richter J. Marital satisfaction with a special focus on gender differences in medical staff in Tehran, Iran. J Family Issues 2014; 14(35): 1940-1958. doi: 10.1177/0192513X13483292.
  31. Denham SA. Relationships between family rituals, family routines, and health. J Family Nurs 2003; 9(3): 305-30. doi: 10.1177/1074840703255447.
  32. Fiese BH, Everhart RS. Medical adherence and childhood chronic illness: family daily management skills and emotional climate as emerging contributors. Curr Opin Pediatr 2006; 18(5): 551-7. doi: 10.1097/01.mop.0000245357.68207.9b.
  33. Mojen LK, Rassouli M, Eshghi P, Sari AA, Karimooi MH. Palliative care for children with cancer in the Middle East: A comparative study. Indian J Palliat Care 2017; 23(4): 379-386. doi: 10.4103/IJPC.IJPC_69_17.
  34. Mousavi PS, Mazaheri MA, Aslafi T, Khalighi F, Poorganji M. Attachment and culture: mother’s perception of attachment related components and beliefs in Iran, Iraq and Afghanistan. Early Child Dev Care 2020; 190(11): 1778-90. doi: 10.1080/03004430.2018.1550749.
  35. Mousavi SH, Qaderi S, Ahmadi A, Madadi S, Arif S, Essar MY, Lucero-Prisno III DE. Inherited bleeding disorders in Afghanistan: The current situation amid COVID-19. Haemophilia 2021; 27(4): e579-580. doi: 10.1111/hae.14332.
  36. Cramer P. Defense mechanisms in psychology today: Further processes for adaptation. Am Psychol 2000; 55(6): 637-46. doi: 10.1037/0003-066X.55.6.637.
  37. Emavardhana T, Tori CD. Changes in self-concept, ego defense mechanisms, and religiosity following seven-day Vipassana meditation retreats. Journal for the Scientific Study of Religion 1997; 36(2): 194-206. doi: 10.2307/1387552.
  38. Johansson P, Høglend P, Ulberg R, et al. The mediating role of insight for long-term improvements in psychodynamic therapy. J Consult Clin Psychol 2010; 78(3): 438-48. doi: 10.1037/a0034708
  39. Azizi N, Delgoshaei B, Aryankhesal A. Lived experience of Afghan refugees in Iran concerning primary health care delivery. Disaster Med Public Health Prep 2019; 13(5-6): 868-73. doi: 10.1017/dmp.2018.169.
  40. Salmani I, Seddighi H, Nikfard M. Access to health care services for Afghan refugees in Iran in the COVID-19 pandemic. Disaster Med Public Health Prep 2020; 14(4): e13-4. doi: 10.1017/dmp.2020.240.
  41. Caruso Brown AE, Howard SC, Baker JN, Ribeiro RC, Lam CG. Reported availability and gaps of pediatric palliative care in low-and middle-income countries: A systematic review of published data. J Palliat Med 2014; 17(12): 1369-83. doi: 10.1089/jpm.2014.0095.
  42. Limperg PF, Haverman L, Beijlevelt M, et al. Psychosocial care for children with haemophilia and their parents in the Netherlands. Haemophilia 2017; 23: 362-369. doi: 10.1111/hae.13186.
Language: English
Page range: 95 - 105
Published on: Oct 31, 2023
Published by: Haemnet Ltd
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year

© 2023 Fatemeh Feizi, Ali Eshghi, Manijeh Firoozi, Zeinab Shormeij, Behnaz Habib Panah, Peyman Eshghi, Javad Alaghband Rad, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.