Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study
-
Mehrnaz Ahmadi
,
Mahin Gheibizadeh
,
Maryam Rassouli
,
Abbas Ebadi
,
Marziyeh Asadizaker
,
Mojtaba Jahanifar
Abstract
Background: Uncertainty leads to a stressful situation in patients with thalassemia major that can dramatically affect their psychosocial coping ability, treatment process and disease outcomes, and reduce patients' quality of life. As one of the important factors affecting the health of thalassemia patients, understanding the concept of uncertainty is of major importance to health care providers especially nurses as the first line of exposure to these patients. The present study aimed to explore the experiences of uncertainty in patients with thalassemia major.
Materials and Methods: The present qualitative study was conducted through in-depth face-to-face semi-structured interviews held with 18 patients with major thalassemia selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analyzed with conventional content analysis method of Landman and Graneheim using MAXQDA10 software.
Results: Two main themes, including 'living in the shadow of anxiety' and 'coping with uncertainty' emerged from patients’ experiences of illness uncertainty of thalassemia. 'Living in the shadow of anxiety' included four categories of 'fear of complications', 'contradictory views on treatment', 'unknown future' and 'stigma'. 'Coping with uncertainty' included three categories of 'spiritual coping', 'psychosocial coping' and 'knowledge acquisition'.
Conclusion: According to the results of this study, uncertainty is a major psychological stress in patients with thalassemia major. Healthcare providers should therefore consider the challenges and concerns faced by patients and, through utilizing appropriate training and communicational practices, plan interventions and strategies to empower patients for coping with uncertainty.
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1. Adib-Hajbaghery M, Ahmadi M, Poormansouri S. Health Related Quality of Life, Depression, Anxiety and Stress in Patients with Beta-Thalassemia Major. Iran J Ped Hematol Oncol. 2015; 5(4):193-205.
2. Khodaei GH, Farbod N, Zarif B, et al. Frequency of thalassemia in Iran and Khorasan Razavi. Int J Pediatr. 2013; 1(1):45-50.
3. Bazrgar M, Peiravian F, Abedpour F, et al. Causes for hospitalization and death in Iranian patients with beta-thalassemia major. Pediatr Hematol Oncol. 2011; 28(2):134-9.
4. Vitrano A, Calvaruso G, Lai E, C, et al. The era of comparable life expectancy between thalassaemia major and intermedia: Is it time to revisit the major-intermedia dichotomy? Br J Haematol. 2017; 176(1):124-30.
5. Tubman VN, Fung EB, Vogiatzi M, et al. Guidelines for the Standard Monitoring of Patients With Thalassemia: Report of the Thalassemia Longitudinal Cohort. J Pediatr Hematol/Oncol. 2015; 37(3):e162-e9.
6. Anum J, Dasti R. Caregiver Burden, Spirituality, and Psychological Well-Being of Parents Having Children with Thalassemia. J Relig Health. 2016; 55(3):941-55.
7. Bazi A, Sargazi-Aval O, Safa A, et al. Health-related Quality of Life and Associated Factors Among Thalassemia Major Patients, Southeast of Iran. J Pediatr Hematol/Oncol. 2017; 39(7):513-7.
8. Pouraboli B, Abedi HA, Abbaszadeh A, et al. Living in a misty marsh: A qualitative study on the experiences of self-care suffering of patients with thalassemia. Iran J Nurs Midwifery Res. 2014; 19(7):77-82.
9. Arbabisarjou A, Karimzaei T, Jamalzaei A. The perception of biological experience in patients with major Thalassemia: a qualitative research. Glob J Health Sci. 2014; 7(1):79-87.
10. Pouraboli B, Abedi HA, Abbaszadeh A, et al. Self-care in Patient with Major Thalassemia: A Grounded Theory. J Caring Sci. 2017; 6(2):127-39.
11. Smith MJ, Liehr PR. Middle range theory for nursing, 3rd edn. Springer Publishing Company: New York, 2014.
12. Cypress BS. Understanding Uncertainty Among Critically Ill Patients in the Intensive Care Unit Using Mishel's Theory of Uncertainty of Illness. Dimens Crit Care Nurs. 2016;35(1):42-9.
13. Lie NK, Larsen TMB, Hauken MA. Coping with changes and uncertainty: A qualitative study of young adult cancer patients' challenges and coping strategies during treatment. Eur J Cancer Care. 2018;27(6):e12743.
14. Hansen BS, Rortveit K, Leiknes I, et al. Patient experiences of uncertainty - a synthesis to guide nursing practice and research. J Nurs Manag. 2012;20(2):266-77.
15. Masuda M, Oishi H, Yamamoto M. Uncertainty in patients with unruptured intracranial aneurysms undergoing endovascular surgery: a qualitative and inductive study. Nurs Res. 2014;63(5):366-74.
16. Sajjadi M, Rassouli M, Abbaszadeh A, et al. Lived Experiences of "Illness Uncertainty" of Iranian Cancer Patients: A Phenomenological Hermeneutic Study. Cancer Nurs. 2016;39(4):E1-9.
17. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004; 24(2):105-12.
18. Guba EG, Lincoln YS. Competing paradigms in qualitative research. Handbook of Qualitative Research. Sage Publications: Thousand Oaks, CA, 1994, pp 105-117.
19. Ismail WI, Ahmad Hassali MA, Farooqui M, et al. Perceptions of thalassemia and its treatment among Malaysian thalassemia patients: A qualitative study. Australas Med J. 2016; 9(5):103-10.
20. Kumar N, Turbitt E, Biesecker BB, et al. Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore. Am J Med Genet A. 2019; 179(5):762-9.
21. Razzazan N, Ravanipour M, Jahanpour F, et al. Investigating Challenges Facing Self-Management Empowerment Education in Adolescents and Youths with Major Thalassemia. JJCDC. 2014; 3(4):e23366.
22. Wahab IA, Naznin M, Nora MZ, et al. Thalassaemia: a study on the perception of patients and family members. Med J Malaysia. 2011; 66(4):326-34.
23. Emami Zeydi A, Karimi Moonaghi H, Heydari A. Exploring Iranian beta-Thalassemia major patients' perception of barriers and facilitators of adherence to treatment: A qualitative study. Electron Physician. 2017;9(12):6102-6110.
24. Pereira NPA, Lanza FM, Viegas S. Living under treatment for Systemic Hypertension and Diabetes Mellitus: Feelings and behaviors. Rev Bras Enferm. 2019;72(1):102-10.
25. Chiaranai C. The Lived Experience of Patients Receiving Hemodialysis Treatment for End-Stage Renal Disease: A Qualitative Study. The J of Nurs Res. 2016;24(2):101-8
26. Poormansouri S, Ahmadi M, Shariati A, et al. Quality of life, depression, anxiety and stress in over-18-year-old patients with beta-Thalassemia major. Sci J Iran Blood Transfus Organ. 2016;13(1):72-82.
27. Hisam A, Khan NUS, Tariq NA, et al. Perceived stress and monetary burden among thalassemia patients and their caregivers. Pak J Med Sci. 2018;34(4):901-6.
28. Shilling V, Starkings R, Jenkins V, et al. The pervasive nature of uncertainty-a qualitative study of patients with advanced cancer and their informal caregivers. J Cancer Surviv. 2017;11(5):590-603.
29. Tanveer T, Masud H, Butt ZA. Are people getting quality thalassemia care in twin cities of Pakistan? A comparison with international standards. Int J Qual Health Care. 2018;30(3):200-7.
30. Etkind SN, Bristowe K, Bailey K, et al. How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliat Med. 2017;31(2):171-80.
31. Maheri A, Sadeghi R, Shojaeizadeh D, et al. Depression, Anxiety, and Perceived Social Support among Adults with Beta-Thalassemia Major: Cross-Sectional Study. Korean J Fam Med. 2018;39(2):101-7.
32. Pouraboli B, Abedi H, Abbaszadeh A, et al. The burden of care: Experiences of parents of children with thalassemia. J Nurs Care. 2017;6(2):1-8.
33. Shahraki-Vahed A, Firouzkouhi M, Abdollahimohammad A, et al. Lived experiences of Iranian parents of beta-thalassemia children. J Multidiscip Healthc. 2017;10:243-251.
34. Moghaddam Tabrizi F, Alizadeh S, Barjasteh S. The Investigation of the Relationship Between Cancer Coping and Symptom Management Self-Efficacy, Perceived Social Support, Uncertainty and Life Orientation in Breast Cancer Female Survivors. Sci J Hamadan Nurs Midwifery Fac. 2018;26(1):1-10.
35. Hashemi F, Naderi Darshori A, Sharif F, et al. Effect of coping strategies training on its use by thalassemia major adolescents: a randomized controlled clinical trial. Int J Community Based Nurs Midwifery. 2015;3(1):67-74.
36. Nikbakht R, Miri S, Foruzi M, et al. The relationship between spiritual consistency and spiritual wellbeing in the patients with thalassemia referred to special diseases clinics in Zahedan in 2014. Int J Pharm Technol. 2016; 8(2):12436-50.
37. Sadeghi NK, Miri S, Jahantigh F, et al. Examining the Relationship Between Spiritual Coping and Spiritual Wellbeing in Patients with Beta-Thalassemia Major. Med Surg Nurs J. 2018; 7(4): e88742.
38. Sajjadi M, Rassouli M, Bahri N, et al. The correlation between perceived social support and illness uncertainty in people with human immunodeficiency virus/acquired immune deficiency syndrome in Iran. Indian J Palliat Care. 2015;21(2):231-5.
2. Khodaei GH, Farbod N, Zarif B, et al. Frequency of thalassemia in Iran and Khorasan Razavi. Int J Pediatr. 2013; 1(1):45-50.
3. Bazrgar M, Peiravian F, Abedpour F, et al. Causes for hospitalization and death in Iranian patients with beta-thalassemia major. Pediatr Hematol Oncol. 2011; 28(2):134-9.
4. Vitrano A, Calvaruso G, Lai E, C, et al. The era of comparable life expectancy between thalassaemia major and intermedia: Is it time to revisit the major-intermedia dichotomy? Br J Haematol. 2017; 176(1):124-30.
5. Tubman VN, Fung EB, Vogiatzi M, et al. Guidelines for the Standard Monitoring of Patients With Thalassemia: Report of the Thalassemia Longitudinal Cohort. J Pediatr Hematol/Oncol. 2015; 37(3):e162-e9.
6. Anum J, Dasti R. Caregiver Burden, Spirituality, and Psychological Well-Being of Parents Having Children with Thalassemia. J Relig Health. 2016; 55(3):941-55.
7. Bazi A, Sargazi-Aval O, Safa A, et al. Health-related Quality of Life and Associated Factors Among Thalassemia Major Patients, Southeast of Iran. J Pediatr Hematol/Oncol. 2017; 39(7):513-7.
8. Pouraboli B, Abedi HA, Abbaszadeh A, et al. Living in a misty marsh: A qualitative study on the experiences of self-care suffering of patients with thalassemia. Iran J Nurs Midwifery Res. 2014; 19(7):77-82.
9. Arbabisarjou A, Karimzaei T, Jamalzaei A. The perception of biological experience in patients with major Thalassemia: a qualitative research. Glob J Health Sci. 2014; 7(1):79-87.
10. Pouraboli B, Abedi HA, Abbaszadeh A, et al. Self-care in Patient with Major Thalassemia: A Grounded Theory. J Caring Sci. 2017; 6(2):127-39.
11. Smith MJ, Liehr PR. Middle range theory for nursing, 3rd edn. Springer Publishing Company: New York, 2014.
12. Cypress BS. Understanding Uncertainty Among Critically Ill Patients in the Intensive Care Unit Using Mishel's Theory of Uncertainty of Illness. Dimens Crit Care Nurs. 2016;35(1):42-9.
13. Lie NK, Larsen TMB, Hauken MA. Coping with changes and uncertainty: A qualitative study of young adult cancer patients' challenges and coping strategies during treatment. Eur J Cancer Care. 2018;27(6):e12743.
14. Hansen BS, Rortveit K, Leiknes I, et al. Patient experiences of uncertainty - a synthesis to guide nursing practice and research. J Nurs Manag. 2012;20(2):266-77.
15. Masuda M, Oishi H, Yamamoto M. Uncertainty in patients with unruptured intracranial aneurysms undergoing endovascular surgery: a qualitative and inductive study. Nurs Res. 2014;63(5):366-74.
16. Sajjadi M, Rassouli M, Abbaszadeh A, et al. Lived Experiences of "Illness Uncertainty" of Iranian Cancer Patients: A Phenomenological Hermeneutic Study. Cancer Nurs. 2016;39(4):E1-9.
17. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004; 24(2):105-12.
18. Guba EG, Lincoln YS. Competing paradigms in qualitative research. Handbook of Qualitative Research. Sage Publications: Thousand Oaks, CA, 1994, pp 105-117.
19. Ismail WI, Ahmad Hassali MA, Farooqui M, et al. Perceptions of thalassemia and its treatment among Malaysian thalassemia patients: A qualitative study. Australas Med J. 2016; 9(5):103-10.
20. Kumar N, Turbitt E, Biesecker BB, et al. Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore. Am J Med Genet A. 2019; 179(5):762-9.
21. Razzazan N, Ravanipour M, Jahanpour F, et al. Investigating Challenges Facing Self-Management Empowerment Education in Adolescents and Youths with Major Thalassemia. JJCDC. 2014; 3(4):e23366.
22. Wahab IA, Naznin M, Nora MZ, et al. Thalassaemia: a study on the perception of patients and family members. Med J Malaysia. 2011; 66(4):326-34.
23. Emami Zeydi A, Karimi Moonaghi H, Heydari A. Exploring Iranian beta-Thalassemia major patients' perception of barriers and facilitators of adherence to treatment: A qualitative study. Electron Physician. 2017;9(12):6102-6110.
24. Pereira NPA, Lanza FM, Viegas S. Living under treatment for Systemic Hypertension and Diabetes Mellitus: Feelings and behaviors. Rev Bras Enferm. 2019;72(1):102-10.
25. Chiaranai C. The Lived Experience of Patients Receiving Hemodialysis Treatment for End-Stage Renal Disease: A Qualitative Study. The J of Nurs Res. 2016;24(2):101-8
26. Poormansouri S, Ahmadi M, Shariati A, et al. Quality of life, depression, anxiety and stress in over-18-year-old patients with beta-Thalassemia major. Sci J Iran Blood Transfus Organ. 2016;13(1):72-82.
27. Hisam A, Khan NUS, Tariq NA, et al. Perceived stress and monetary burden among thalassemia patients and their caregivers. Pak J Med Sci. 2018;34(4):901-6.
28. Shilling V, Starkings R, Jenkins V, et al. The pervasive nature of uncertainty-a qualitative study of patients with advanced cancer and their informal caregivers. J Cancer Surviv. 2017;11(5):590-603.
29. Tanveer T, Masud H, Butt ZA. Are people getting quality thalassemia care in twin cities of Pakistan? A comparison with international standards. Int J Qual Health Care. 2018;30(3):200-7.
30. Etkind SN, Bristowe K, Bailey K, et al. How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliat Med. 2017;31(2):171-80.
31. Maheri A, Sadeghi R, Shojaeizadeh D, et al. Depression, Anxiety, and Perceived Social Support among Adults with Beta-Thalassemia Major: Cross-Sectional Study. Korean J Fam Med. 2018;39(2):101-7.
32. Pouraboli B, Abedi H, Abbaszadeh A, et al. The burden of care: Experiences of parents of children with thalassemia. J Nurs Care. 2017;6(2):1-8.
33. Shahraki-Vahed A, Firouzkouhi M, Abdollahimohammad A, et al. Lived experiences of Iranian parents of beta-thalassemia children. J Multidiscip Healthc. 2017;10:243-251.
34. Moghaddam Tabrizi F, Alizadeh S, Barjasteh S. The Investigation of the Relationship Between Cancer Coping and Symptom Management Self-Efficacy, Perceived Social Support, Uncertainty and Life Orientation in Breast Cancer Female Survivors. Sci J Hamadan Nurs Midwifery Fac. 2018;26(1):1-10.
35. Hashemi F, Naderi Darshori A, Sharif F, et al. Effect of coping strategies training on its use by thalassemia major adolescents: a randomized controlled clinical trial. Int J Community Based Nurs Midwifery. 2015;3(1):67-74.
36. Nikbakht R, Miri S, Foruzi M, et al. The relationship between spiritual consistency and spiritual wellbeing in the patients with thalassemia referred to special diseases clinics in Zahedan in 2014. Int J Pharm Technol. 2016; 8(2):12436-50.
37. Sadeghi NK, Miri S, Jahantigh F, et al. Examining the Relationship Between Spiritual Coping and Spiritual Wellbeing in Patients with Beta-Thalassemia Major. Med Surg Nurs J. 2018; 7(4): e88742.
38. Sajjadi M, Rassouli M, Bahri N, et al. The correlation between perceived social support and illness uncertainty in people with human immunodeficiency virus/acquired immune deficiency syndrome in Iran. Indian J Palliat Care. 2015;21(2):231-5.
| Files | ||
| Issue | Vol 14, No 4 (2020) | |
| Section | Original Article(s) | |
| DOI | https://doi.org/10.18502/ijhoscr.v14i4.4479 | |
| Keywords | ||
| Patients with thalassemia Uncertainty Qualitative study Iran | ||
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How to Cite
1.
Ahmadi M, Gheibizadeh M, Rassouli M, Ebadi A, Asadizaker M, Jahanifar M. Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study. Int J Hematol Oncol Stem Cell Res. 2020;14(4):237-247.
