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REVIEW

Nursing Interventions to Improve Quality of Life Among Children and Adolescents with Thalassemia: A Scoping Review

ORCID Icon, , ORCID Icon & ORCID Icon
Pages 1749-1762 | Received 01 Apr 2023, Accepted 21 Jun 2023, Published online: 23 Jun 2023

References

  • Adam S, Afifi H, Thomas M, Magdy P, El-Kamah G. Quality of life outcomes in a pediatric thalassemia population in Egypt. Hemoglobin. 2017;41(1):16–20. doi:10.1080/03630269.2017.1312434
  • Telfer P, Constantinidou G, Andreou P, Christou S, Modell B, Angastiniotis M. Quality of life in thalassemia. Ann N Y Acad Sci. 2005;1054(1):273–282. doi:10.1196/annals.1345.035
  • Sheikh KA, El-setouhy M, Yagoub U, Alsanosy R, Ahmed Z. Khat chewing and health related quality of life: cross-sectional study in Jazan region, Kingdom of Saudi Arabia. Health Qual Life Outcomes. 2014;12(1):44. doi:10.1186/1477-7525-12-44
  • Dhirar N, Khandekar J, Bachani D, Mahto D. Thalassemia Major: how do we improve quality of life? Springerplus. 2016;5(1):1895. doi:10.1186/s40064-016-3568-4
  • Apidechkul T, Yeemard F, Chomchoei C, Upala P, Tamornpark R. Epidemiology of thalassemia among the hill tribe population in Thailand. PLOS ONE. 2021;16(2):1–16. doi:10.1371/journal.pone.0246736.
  • Wacharasin C, Phaktoop M, Sananreangsak S. Examining the usefulness of a family empowerment program guided by the illness beliefs model for families caring for a child with thalassemia. J Fam Nurs. 2015;21(2):295–321. doi:10.1177/1074840715585000
  • Zinati F, Khashaninia Z, Rahgoi A, Rezasoltani P, Babamahmodi F. The effect of partnership caring model on quality of life of adolescents with major thalassemia. Iran J Rehabil Res. 2016;2(2):57–67.
  • Babaei MR, Askarizadeh G, Towhidi A. The effectiveness of Stress Management and Resilience Training (SMART) on psychological well-being in patients with thalassemia major. Prev Care Nurs Midwifery J. 2019;8(4):8–15. doi:10.29252/pcnm.8.4.8
  • Ribeil JA, Arlet JB, Dussiot M, Cruz Moura I, Courtois G, Hermine O. Ineffective erythropoiesis in β-thalassemia. Sci World J. 2013;2013:394295. doi:10.1155/2013/394295
  • Khanna AK, Prabhakaran A, Patel P, Ganjiwale JD, Nimbalkar SM. Social, psychological and financial burden on caregivers of children with chronic illness: a cross-sectional study. Indian J Pediatr. 2015;82(11):1006–1011. doi:10.1007/s12098-015-1762-y
  • Elzaree FA, Shehata MA, El Wakeel MA, El-Alameey IR, AbuShady MM, Helal SI. Adaptive functioning and psychosocial problems in children with beta thalassemia major. Open Access Maced J Med Sci. 2018;6(12):2337–2341. doi:10.3889/oamjms.2018.367
  • Hellström Y, Persson G, Hallberg IR. Quality of life and symptoms among older people living at home. J Adv Nurs. 2004;48(6):584–593. doi:10.1111/j.1365-2648.2004.03247.x
  • Sadek EH, Elsayh KI, Mohammed FZ, Mohamed NT, Faheem S. Effect of an educational program on self-efficacy of adolescents with thalassemia major. Assiut Sci Nurs J. 2020;8(22):72–85. doi:10.21608/asnj.2020.87263
  • Borimnejad L, Parvizy S, Haghaani H, Sheibani B. The effect of family-centered empowerment program on self-efficacy of adolescents with thalassemia major: a randomized controlled clinical trial. Int J Community Based Nurs Midwifery. 2018;6(1):29–38.
  • Kim S, Tridane A. Thalassemia in the United Arab Emirates: why it can be prevented but not eradicated. PLoS One. 2017;12(1):e0170485. doi:10.1371/journal.pone.0170485
  • 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:10.1097/MPH.0000000000000963
  • Wang M, Huang M, Hong Y. Psychological intervention in children with transfusion-dependent β-thalassaemia. Vox Sang. 2022;117(3):386–392. doi:10.1111/vox.13201
  • Pouraboli B, Abedi HA, Abbaszadeh A, Kazemi M. Self-care in Patient with Major Thalassemia: a Grounded Theory. J Caring Sci. 2017;6(2):127–139. doi:10.15171/jcs.2017.013
  • Hassan SME, Azzab Seshi E. Study of the health instructions effect on quality of life and psychological problems among children with thalassemia. Int J Stud Nurs. 2016;1(1):16. doi:10.20849/ijsn.v1i1.92
  • Sawicki GS, Ostrenga J, Petren K, et al. Risk factors for gaps in care during transfer from pediatric to adult cystic fibrosis programs in the United States. Ann Am Thorac Soc. 2018;15(2):234–240. doi:10.1513/AnnalsATS.201705-357OC
  • Manwani D, Doyle MH, Davidson L, et al. Transition navigator intervention improves transition readiness to adult care for youth with sickle cell disease. Acad Pediatr. 2022;22(3):422–430. doi:10.1016/j.acap.2021.08.005
  • Manwani D, Doyle MH, Davidson L, et al. Health-related quality of life in adults with transfusion-independent thalassaemia intermedia compared to regularly transfused thalassaemia major: new insights. Am J Hematol. 2017;43(4):848–850. doi:10.1186/s40064-016-3568-4
  • Lapp V, Chase SK. How do youth with cystic fibrosis perceive their readiness to transition to adult healthcare compared to their Caregivers’ views? J Pediatr Nurs. 2018;43:104–110. doi:10.1016/j.pedn.2018.09.012
  • Hunt WR, Linnemann RW, Middour-Oxler B. Transition planning for chronic illnesses in the time of COVID-19. J Patient Exp. 2020;7(6):848–850. doi:10.1177/2374373520978875
  • Akcalı A, Yıldız MS, Akcalı Z, et al. Periodontal condition of patients with Thalassemia Major: a systematic review and meta-analysis. Arch Oral Biol. 2019;102(2):113–121. doi:10.1016/j.archoralbio.2019.04.004
  • Saha R, Misra R, Saha I. Health related quality of life and its predictors among Bengali thalassemic children admitted to a tertiary care hospital. Indian J Pediatr. 2015;82(10):909–916. doi:10.1007/s12098-014-1670-6
  • Mardhiyah A, Panduragan SL, Mediani HS. Reducing psychological impacts on children with chronic disease via family empowerment: a scoping review. Healthcare. 2022;10(10):2034. doi:10.3390/healthcare10102034
  • Lappalainen P, Pakkala I, Strömmer J, Sairanen E, Kaipainen K, Lappalainen R. Supporting parents of children with chronic conditions: a randomized controlled trial of web-based and self-help ACT interventions. Internet Interv. 2021;24:100382. doi:10.1016/j.invent.2021.100382
  • Blake H, Yildirim M, Wood B, et al. Covid-well: evaluation of the implementation of supported wellbeing centres for hospital employees during the COVID-19 pandemic. Int J Environ Res Public Health. 2020;17(24):1–22. doi:10.3390/ijerph17249401
  • Elliott T, Tong I, Sheridan A, Lown BA. Beyond convenience: patients’ perceptions of physician interactional skills and compassion via telemedicine. Mayo Clin Proc Innov Qual Outcomes. 2020;4(3):305–314. doi:10.1016/j.mayocpiqo.2020.04.009
  • Forni GL, Puntoni M, Boeri E, Terenzani L, Balocco M. The influence of treatment in specialized centers on survival of patients with thalassemia major. Am J Hematol. 2009;84(5):317–318. doi:10.1002/ajh.21398
  • Musallam KM, Khoury B, Abi-Habib R, et al. Health-related quality of life in adults with transfusion-independent thalassaemia intermedia compared to regularly transfused thalassaemia major: new insights. Eur J Haematol. 2011;87(1):73–79. doi:10.1111/j.1600-0609.2011.01623.x
  • Cramm JM, Strating MMH, Sonneveld HM, Nieboer AP. The longitudinal relationship between satisfaction with transitional care and social and emotional quality of life among chronically ill adolescents. Appl Res Qual Life. 2013;8(4):481–491. doi:10.1007/s11482-012-9209-3
  • Elsayed LA. Nursing guidelines for children suffering from beta thalassemia. Int J Nurs Sci. 2015;5(4):131–135. doi:10.5923/j.nursing.20150504.02
  • Az-zahra WF, Mardhiyah A, Nurhidayah I. The depression categories of adolescent with beta-thalassemia major. J Nurs Care. 2019;2(1). doi:10.24198/jnc.v2i1.20162
  • Madmoli Y, Majin SA, Rahmati P, Khodadadi M. Health-related Quality of Life of Young Adult with beta-Thalassemia. Sci J Nurs. 2019;4(4):66–75.
  • Peterson J, Pearce PF, Ferguson LA, Langford CA. Understanding scoping reviews: definition, purpose, and process. J Am Assoc Nurse Pract. 2017;29(1):12–16. doi:10.1002/2327-6924.12380
  • Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–473. doi:10.7326/M18-0850
  • Bradbury-Jones C, Aveyard H, Herber OR, Isham L, Taylor J, O’Malley L. Scoping reviews: the PAGER framework for improving the quality of reporting. Int J Soc Res Methodol. 2021;00(00):1–14. doi:10.1080/13645579.2021.1899596
  • Page MJ. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021. doi:10.1136/bmj.n71
  • Rafii Z, Ahmadi F, Nourbakhsh SMK. The effects of an orientation program on quality of life of patients with thalassemia: a quasi-experimental study. J Caring Sci. 2016;5(3):223–229. doi:10.15171/jcs.2016.024
  • Salehipour S, Ghaljeh M, Navidian A, Sarani H. Impact of continuous care model on the quality of life of patients with Thalassemia major: a clinical trial study. Evid Based Care J. 2021;10(4):59–66. doi:10.22038/ebcj.2021.56920.2488
  • Jabbarifard F, Sharifi T, Solati K, Ghazanfari A. The effectiveness of acceptance and commitment therapy on perceived stress, resilience, and the quality of life in thalassemia major patients. J Shahrekord Univ Med Sci. 2019;21(2):91–97. doi:10.34172/jsums.2019.16
  • Taheri P, Nooryan K, Karimi Z, Zoladl M. Effect of individual psychotherapy with a focus on self-efficacy on quality of life in patients with thalassemia major: a clinical trial. J Clin Care Skin. 2020;1(2):49–54. doi:10.52547/jccs.1.2.49
  • Madmoli Y, Akhaghi Dezfuli SM, Adavi A, Maraghi E, Heidari-Soureshjani R, Madmoli M. The effect of orem self-care on mental health of patients with thalassemia major. J Clin Nurs Midwifery. 2018;7(2):108–115.
  • Dehnoalian A, Madadkar S, Alaviani M, Motamedi Z, Ahmadpour S, Banan-Sharifi M. The impact of educational counseling program on quality of life of thalassemia patients. Jundishapur J Chronic Dis Care. 2017. doi:10.5812/jjcdc.55980
  • El-Said Zaghamir D, Hanie El-Kazaz R, Ahmed Khalil Morsy A, Ahmed Elmazahy M. Impact of educational program about iron chelation therapy on the quality of life for thalassemic children. Port Said Sci J Nurs. 2019;6(3):33–49. doi:10.21608/pssjn.2019.66511
  • Abu Samra O, Auda W, Kamhawy H, Al-Tonbary Y. Impact of educational programme regarding chelation therapy on the quality of life for B-thalassemia major children. Hematology. 2015;20(5):297–303. doi:10.1179/1607845414Y.0000000197
  • Tarım HŞ, Öz F. Thalassemia Major and Associated Psychosocial Problems: a Narrative Review. Iran J Public Health. 2022;51(1):12–18. doi:10.18502/ijph.v51i1.8287
  • Nassim MS, Mahmoud MA, Abu Shady H, Mohammed EAER. Assessment of disease knowledge gaps among beta thalassemia major patients and their caregivers. Egypt Pediatr Assoc Gaz. 2022;70(1):49. doi:10.1186/s43054-022-00143-w
  • Agarwal PK, Xie H, Sathyapalan Rema AS, et al. Evaluation of the ages and stages questionnaire (ASQ 3) as a developmental screener at 9, 18, and 24 months. Early Hum Dev. 2020:147. doi:10.1016/j.earlhumdev.2020.105081
  • Septyana G, Mardhiyah A, Widianti E. The mental burden of parents of children with thalassemia. J Keperawatan Padjadjaran. 2019;7(1):93–100. doi:10.24198/jkp.v7i1.1154
  • Miri-Aliabad G, Fadaee M, Khajeh A, Naderi M. Marital status and fertility in adult Iranian patients with β-thalassemia major. Indian J Hematol Blood Transfus. 2016;32(1):110–113. doi:10.1007/s12288-015-0510-9
  • Borhani F, Najafi MK, Rabori ED, Sabzevari S. The effect of family-centered empowerment model on quality of life of school-aged children with thalassemia major. Iran J Nurs Midwifery Res. 2011;16(4):292–298.
  • Thiyagarajan A, Bagavandas M, Kosalram K. Assessing the role of family well-being on the quality of life of Indian children with thalassemia. BMC Pediatr. 2019;19(1):1–6. doi:10.1186/s12887-019-1466-y
  • Yosep I, Hikmat R, Mardhiyah A. Types of digital-based nursing interventions for reducing stress and depression symptoms on adolescents during COVID-19 pandemic: a scoping review. J Multidiscip Healthc. 2023;16:785–795. doi:10.2147/JMDH.S406688
  • Mohammadi S, Tajvidi M, Ghazizadeh S. The relationship between spiritual well-being with quality of life and mental health of young adults with beta-thalassemia major. Sci J Iran Blood Transfus Organ. 2014;11:1.
  • Klaassen RJ. Introducing the tran qol: a new disease-specific quality of life measure for children and adults with thalassemia major. J Blood Disord Transfus. 2013;4(4). doi:10.4172/2155-9864.1000150
  • Roche M, Diers D, Duffield C, Catling-Paull C. Violence toward nurses, the work environment, and patient outcomes. J Nurs Scholarsh. 2010;42(1):13–22. doi:10.1111/j.1547-5069.2009.01321.x
  • Yosep I, Hikmat R, Mardhiyah A. Nursing intervention for preventing cyberbullying and reducing its negative impact on students: a scoping review. J Multidiscip Healthc. 2023;16:261–273. doi:10.2147/JMDH.S400779
  • Tajvidi M, Zeighmi Mohammadi S. The level of loneliness, hopelessness and self-esteem in major thalassemia adolescents. Sci J Iran Blood Transfus Organ. 2012;9(1):36–43.
  • Ghaljeh M, Salarzehi FK, Salehipour S. The effect of benson relaxation technique on anxiety and quality of life in patients with thalassemia major: a clinical trial. Indian J Hematol Blood Transfus. 2023. doi:10.1007/s12288-023-01633-6
  • Razzazan N, Ravanipour M, Jahanpour F, Zarei AR, Motamed N, Hosseini S. Investigating challenges facing self-management empowerment education in adolescents and youths with major thalassemia. Jundishapur J Chronic Dis Care. 2015;3(4). doi:10.17795/jjcdc-23366
  • Rashid MA, Ul H, Abbasi SURS. Theorizing beta thalassemia major: an overview of health sociology. Int Multidiscip J Soc Sci. 2020;9(1 SE–Articles):51–75. doi:10.17583/rimcis.2020.5113
  • Kharyal R, Kumari V, Mrunalini VT, Naik M, Joshi P, Seth T. Disease knowledge and general self-efficacy among adolescents with thalassemia major and their parents’ perspective. Indian J Hematol Blood Transfus. 2021;37(2):280–286. doi:10.1007/s12288-020-01335-3
  • Yang E, Schamber E, Meyer RML, Gold JI. Happier healers: randomized controlled trial of mobile mindfulness for stress management. J Altern Complement Med. 2020;24(5):505–513. doi:10.1089/acm.2015.0301
  • Arch JJ, Mitchell JL, Genung SR, Fisher R, Andorsky DJ, Stanton AL. A randomized controlled trial of a group acceptance-based intervention for cancer survivors experiencing anxiety at re-entry (‘Valued Living’): study protocol. BMC Cancer. 2019;19(1):89. doi:10.1186/s12885-019-5289-x
  • Farb NAS, Anderson AK, Segal ZV. The mindful brain and emotion regulation in mood disorders. Can J Psychiatry. 2012;57(2):70–77. doi:10.1177/070674371205700203
  • Morris JH, Kelly C, Joice S, et al. Art participation for psychosocial wellbeing during stroke rehabilitation: a feasibility randomised controlled trial. Disabil Rehabil. 2019;41(1):9–18. doi:10.1080/09638288.2017.1370499
  • Tagai EK, Miller SM, Hudson V, et al. Improved cancer coping from a web-based intervention for prostate cancer survivors: a randomized controlled trial. Psychooncology. 2021;30(9):1466–1475. doi:10.1002/pon.5701
  • Şahın H, Naz İ, Karadeniz G, Süneçlı O, Polat G, Ediboğlu O. Effects of a home-based pulmonary rehabilitation program with and without telecoaching on health-related outcomes in COVID-19 survivors: a randomized controlled clinical study. J Bras Pneumol Publicacao da Soc Bras Pneumol e Tisilogia. 2023;49(1):e20220107. doi:10.36416/1806-3756/e20220107
  • Behdani F, Badiee Z, Hebrani P, et al. Psychological aspects in children and adolescents with major thalassemia: a case-control study. Iran J Pediatr. 2015;25(3):0–7. doi:10.5812/ijp.25(3)2015.322
  • Gupta J, Falb KL, Ponta O, et al. A nurse-delivered, clinic-based intervention to address intimate partner violence among low-income women in Mexico City: findings from a cluster randomized controlled trial. BMC Med. 2017;15(1):128. doi:10.1186/s12916-017-0880-y
  • Eren R, Karışmaz A, Aslan C, et al. Beta thalassemia minor: patients are not tired but depressed and anxious. Med Princ Pract Int J Kuwait Univ Heal Sci Cent. 2021;30(1):69–72. doi:10.1159/000508981
  • Seyedifar M, Dorkoosh FA, Hamidieh AA, et al. Health-related quality of life and health utility values in beta thalassemia major patients receiving different types of iron chelators in Iran. Int J Hematol Stem Cell Res. 2016;10(4):224–231.
  • Boonchooduang N, Louthrenoo O, Choeyprasert W, Charoenkwan P. Health-related quality of life in adolescents with thalassemia. Pediatr Hematol Oncol. 2015;32(5):341–348. doi:10.3109/08880018.2015.1033795