The Relationship between Family Cohesion and Quality of Life in Patients with beta-thalassemia Major: A Study in Southwestern Iran

  • Mobin Mottahedi Master Student of the Operating Room, Student Research Committee, Paramedical School of Kermanshah University of Medical Sciences, Kermanshah, Iran.
  • Pouriya Darabiyan Student Research Committee, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. https://orcid.org/0000-0002-9529-1730
  • Hadis Nazari M.Sc in Pediatric Nursing, Department of Nursing, Faculty of Nursing and Midwifery, Ilam University of Medical Sciences, Ilam, Iran.
  • Alireza Rafi M.Sc Student of Nursing, Student Research Committee, School of Nursing & Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran*.
  • Shokofe Shirmardi Nursing Student, Student Research Committee, Masjed-Soleyman health Education Complex, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran.
  • Parisa Eskandari Nursing Student, Student Research Committee, Masjed-Soleyman health Education Complex, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran.
  • Zeinab Raiesifar Student Research Committee, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran.
Keywords: Beta-thalassemia, Family Cohesion, Quality of Life

Abstract

Introduction: Thalassemia is a group of genetic disorders caused by defects in the production of certain hemoglobin chains that beta-thalassemia is the most common recurrent type of this inherited blood disorder. The quality of life of patients with thalassemia is low for several reasons. Considering the effects that family cohesion has on improving the complications of this disease and quality of life and that a limited study has been done in this field and the effect of family cohesion in improving the quality of life of patients with beta-thalassemia major has received less attention, this The aim of this study was to investigate the relationship between family cohesion and quality of life of people with beta-thalassemia major in Iran in Behbahan during 2019.

Methods: The present study is a cross-sectional analytical study that aims to investigate the relationship between family cohesion and quality of life of people with beta-thalassemia major in Behbahan, Iran in 2019 on 101 patients with thalassemia major who were admitted to Shahidzadeh Hospital. They had visited Behbahan. Inclusion criteria were: having thalassemia major, having the patient's consent to participate in the study, having full consciousness, having literacy, and having at least one history of hospitalization. Exclusion criteria included incomplete questionnaire completion. Data collection tools included three questionnaires of demographic characteristics, mouse family cohesion (2009), and quality of life SF_36. And the method of data collection was based on self-report and filling out questionnaires. Finally, the obtained data were analyzed using SPSS software version 18 and Chi-square, independent t-test, Pearson correlation coefficient.

Results: There was a statistically significant relationship between marriage and quality of life and surgical history and family cohesion (P <0.05). The relationship between other demographic variables and quality of life and family cohesion was not significant (P >0.05). There was no statistically significant correlation between the quality of life and its dimensions and total family cohesion score (P >0.05).

Conclusion: The final result of the present study showed that there is no statistically significant correlation between the quality of life and its dimensions and the total score of family cohesion in patients with thalassemia major in Behbahan. Evaluation of indicators and factors related to the quality of life in patients with thalassemia major is an essential first step in optimizing clinical and psychological support.

References

McKinney E, James S, Murray S, Nelson K, Ashwill J. Maternal-Child Nursing. Elsevier Health Sciences; 2012.

Jameson JL, Fauci AS, L KD, Hauser SL, Longo DL. Harrison’s Principles of Internal Medicine. 20th ed. McGraw-Hill; 2018.

Amoudi AS, Balkhoyor AH, Abulaban AA, Azab AM, Radi SA, Ayoub MD, et al. Quality of life among adults with beta-thalassemia major in western Saudi Arabia. Saudi Med J. 2014;35(8):882–5. https://smj.org.sa/content/smj/35/8/882.full.pdf

Amani F, Fathi A, Valizadeh M, Farzaneh E, Fattahzadeh-Ardalani E. Quality of life among Ardabil patients with beta-thalassemia major. Int J Res Med Sci. 2015;3(11):3308–12. doi: https://dx.doi.org/10.18203/2320-6012.ijrms20151182

Vichinsky EP, MacKlin EA, Waye JS, Lorey F, Olivieri NF. Changes in the epidemiology of thalassemia in North America: a new minority disease. Pediatrics. 2005;116(6):e818–25. doi: https://doi.org/10.1542/peds.2005-0843

Balne NG, Rao C. Role of XmnI restriction site polymorphism and JAK2 gene mutation in β-Thalassemia. Int Res J Biol Sci. 2013;2(1):41–45. http://www.isca.in/IJBS/Archive/v2/i1/7.ISCA-IRJBS-2012-203.php

Gomber S, Dewan P. Physical growth patterns and dental caries in thalassemia. Indian Pediatr. 2006;43(12):1064.

Baraz S, Miladinia M, Mosavinouri E. A comparison of quality of life between adolescences with beta thalassemia major and their healthy peers. Int J Pediatr. 2016;4(1):1195–204.

Zarea K, Baraz SH, Pedram M, Pakbaz Z. Comparison of quality of life in adolescences with Thalassemia and their families. 2014, 8(4): 42-50. http://ijnr.ir/browse.php?a_id=1305&sid=1&slc_lang=en

Azad M, Shiargar P, Kazemi Haki B. Quality of life in patients with thalassemia major referred to Ardabil Buali Hospital in 2012-13. Med Sci J Islam Azad Univesity-Tehran Med Branch. 2015;25(4):305–310. https://tmuj.iautmu.ac.ir/browse.php?a_id=1029&sid=1&slc_lang=en

Ghazanfari Z, Arab M, Forouzi M, POURABOULI B. Knowledge level and education needs of thalassemic childern’s parents of Kerman city. 2010; 99-103. https://www.sid.ir/en/journal/ViewPaper.aspx?id=184095

Ali BA, Mahmoud AM. Frequency of glomerular dysfunction in children with beta thalassaemia major. Sultan Qaboos Univ Med J. 2014;14(1):e88-94. doi: https://doi.org/10.12816/0003341

Caocci G, Efficace F, Ciotti F, Roncarolo MG, Vacca A, Piras E, et al. Health related quality of life in Middle Eastern children with beta-thalassemia. BMC Blood Disord. 2012;12(6):1–7. doi: https://doi.org/10.1186/1471-2326-12-6

Jain M, Bagul AS, Porwal A. Psychosocial problems in thalassemic adolescents and young adults. Chronicles young Sci. 2013;4(1).21-23. doi: https://doi.org/10.4103/2229-5186.108800

Haghpanah S, Nasirabadi S, Ghaffarpasand F, Karami R, Mahmoodi M, Parand S, et al. Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire. Sao Paulo Med J. 2013;131:166–72. doi: https://doi.org/10.1590/1516-3180.2013.1313470

Toljamo M, Hentinen M. Adherence to self‐care and social support. J Clin Nurs. 2001;10(5):618–627. doi: https://doi.org/10.1046/j.1365-2702.2001.00520.x

babapur jalil, bahavarnia elnaz. A Comparative Study of the Cohesion and Flexibility of Families with HIV/Aids Affected Members and Families in the General Population. Couns Cult Psycotherapy [Internet]. 2012;3(11):43–60. doi: https://dx.doi.org/10.22054/qccpc.2012.6077

Widayanti CG. The perceived role of god in health and illness: the experience of javanese mothers caring for a child with thalassemia. J Psikologi, 9. 2011; https://ejournal.undip.ac.id/index.php/psikologi/article/view/2903

McKeown RE, Garrison CZ, Jackson KL, Cuffe SP, Addy CL, Waller JL. Family structure and cohesion, and depressive symptoms in adolescents. J Res Adolesc. 1997;7(3):267–81. https://www.tandfonline.com/doi/pdf/10.1207/s15327795jra0703_2?needAccess=true

Feldman RT. Perceived cohesion and depression among women. Personal Soc Psychol. 1996;17:103–12.

Levine L, Levine M. Health care transition in thalassemia: pediatric to adult-oriented care. Ann N Y Acad Sci [Internet]. 2010 Aug 1;1202(1):244–247. doi: https://doi.org/10.1111/j.1749-6632.2010.05598.x

Mikelli A, Tsiantis J. Brief report: Depressive symptoms and quality of life in adolescents with b-thalassaemia. J Adolesc [Internet]. 2004;27(2):213–216. doi: https://doi.org/10.1016/j.adolescence.2003.11.011

Hoch C, Göbel U, Janssen G. Psychosocial support of patients with homozygous beta-thalassaemia. Klin Padiatr. 2000;212(4):216–9. doi: https://doi.org/10.1055/s-2000-9680

Pakbaz Z, Treadwell M, Yamashita R, Quirolo K, Foote D, Quill L, et al. Quality of life in patients with thalassemia intermedia compared to thalassemia major. Ann N Y Acad Sci. 2005;1054(1):457–61. doi: https://doi.org/10.1196/annals.1345.059

Madmoli Y, Beiranvand R, Korkini N, Mashalchi H, Beigom Bigdeli shamloo M, Karimi H, et al. Comparison of health-related quality of life in beta thalassemia major and healthy people in Dezful in 2015. IJNR [Internet]. 2016 Apr 1;11(1):9–16. Available from: http://ijnr.ir/article-1-1663-en.html

ARIAN M, MEMARIAN R, VAKILIAN F, BADIEE Z. IMPACT OF AN 8-WEEK WALKING PROGRAM ON QUALITY OF LIFE IN PATIENTS WITH THALASSEMIA MAJOR. FEYZ [Internet]. 2013;17(5):463–70. Available from: https://www.sid.ir/en/Journal/ViewPaper.aspx?ID=369055

Canatan D, Ratip S, Kaptan S, Cosan R. Psychosocial burden of β-thalassaemia major in Antalya, South Turkey. Soc Sci Med. 2003;56(4):815–9. doi: https://doi.org/10.1016/s0277-9536(02)00080-1

Aydinok Y, Erermis S, Bukusoglu N, Yilmaz D, Solak U. Psychosocial implications of thalassemia major. Pediatr Int. 2005;47(1):84–9. doi: https://doi.org/10.1111/j.1442-200x.2004.02009.x

Moos RH, Trickett EJ. Classroom environment scale: Manual. 1974;

Brazier JE, Harper R, Jones NM, O’cathain A, Thomas KJ, Usherwood T, et al. Validating the SF-36 health survey questionnaire: new outcome measure for primary care. Br Med J. 1992;305(6846):160–4. doi: https://doi.org/10.1136/bmj.305.6846.160

MONTAZERI A, GOSHTASBI A, VAHDANINIA MAS. The Short Form Health Survey (Sf-36): Translation And Validation Study Of The Iranian Version. PAYESH [Internet]. 2006;5(1):49–56. Available from: https://www.sid.ir/en/journal/ViewPaper.aspx?id=45342

Choudhry VP. Quality of Life in Thalassemia Major. Indian J Pediatr [Internet]. 2018;85(11):957–8. doi: https://doi.org/10.1007/s12098-018-2792-z

Töret E, Karadaş NÖ, Gökçe NÖ, Kaygusuz A, Karapınar TH, Oymak Y, et al. Quality of Life and Depression in Turkish Patients with β-Thalassemia Major: A Cross-Sectional Study. Hemoglobin. 2018 Nov 2;42(5–6):326–329. doi: https://doi.org/10.1080/03630269.2018.1551231

Bazi A, Sargazi-Aval O, Safa A, Miri-Moghaddam E. Health-related quality of life and associated factors among Thalassemia major patients, Southeast of Iran. J Pediatr Hematol Oncol. 2017;39(7):513–517. doi: https://doi.org/10.1097/mph.0000000000000963

Ali SS, Tarawah AM, Al-Hawsawi ZM, Zolaly MA, Turkustani W. Comprehensive patient care improves quality of life in transfusion dependent patients with β-thalassemia. Saudi Med J. 2015;36(5):575-579. doi: https://doi.org/10.15537/smj.2015.5.10442

Ajij M, Pemde HK, Chandra J. Quality of life of adolescents with transfusion-dependent thalassemia and their siblings: a cross-sectional study. J Pediatr Hematol Oncol. 2015;37(3):200–203. doi: https://doi.org/10.1097/mph.0000000000000244

Kaheni S, Yaghobian M, Sharefzadah GH, Vahidi A, Ghorbani H, Abderahemi A. Quality of life in children with β-thalassemia major at center for special diseases. Iran J Pediatr Hematol Oncol. 2013;3(3):108-113. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921875/

Ickmans K, Clarys P, Nijs J, Meeus M, Aerenhouts D, Zinzen E, et al. Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome. J Rehabil Res Dev. 2013;50(6),795-810. https://www.rehab.research.va.gov/jour/2013/506/pdf/ickmans506.pdf

Keshvari M, Ebrahimi A, Abedi H. Relation between children’s well-being and family function in children with thalassemia major in Isfahan in 2013. Glob J Heal Sci. 2016;8:170-177. doi: https://doi.org/10.5539/gjhs.v8n12p170

Haghpanah S, Vahdati S, Karimi M. Comparison of quality of life in patients with β-Thalassemia intermedia and β-Thalassemia major in Southern Iran. Hemoglobin. 2017;41(3):169–74. doi: https://doi.org/10.1080/03630269.2017.1340307

Yang HC, Chen YC, Mao HC, Lin KH. Illness knowledge, social support and self care behavior in adolescents with beta-thalassemia major. Hu li yan jiu= Nurs Res. 2001;9(2):114–24. https://pubmed.ncbi.nlm.nih.gov/11548457/

Published
2022-01-07
How to Cite
Mottahedi, M., Darabiyan, P., Nazari, H., Rafi, A., Shirmardi, S., Eskandari, P., & Raiesifar, Z. (2022). The Relationship between Family Cohesion and Quality of Life in Patients with beta-thalassemia Major: A Study in Southwestern Iran. International Research in Medical and Health Sciences, 4(6), 14-23. https://doi.org/10.36437/10.36437/irmhs.2021.4.6.B