Family and Peer Group Support Related to The Quality of Life of Thalassemic Adolescents in Outpatient Settings
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Abstract
Thalassemia in Indonesia is dominated by teens. Thalassemic adolescents often experience psychosocial problems. The role of family and peer group support in the quality of life of thalassemic adolescents is still inconclusive. This study aim to determine the association between family and peer group support on the quality of life of thalassemic adolescents in one government hospital in Jakarta, Indonesia. An analytical observational study with a cross-sectional approach on β-thalassemia sufferers aged 12-18 years who came to the Children's Polyclinic and intervention room in November-December 2023. Family and peer group support was measured using the Social Support Scale, while quality of life was measured using the validated Generic Pediatric Quality of Life Inventory Version 4.0 (PedsQL). The data obtained were analyzed using Chi-Square and logistic regression tests. Forty-three patients were involved in this study. The average age of respondents was 14.4 years (range 13.8 – 15.1), the average time of diagnosis was 9.49 years (range 8.0 – 11.0), the average hemoglobin (Hb) level was 9.2 gr/dl (range 8.7 – 9.6 gr/dl). The majority of respondents were male (65.1%), had low education (60.5%), and had a good adherence to iron chelation therapy (100%). The association between family and peer group support on quality of life obtained a p-value of 0.014 and 0.006 with an Odd Ratio (OR) of 4.976 and 7.333 respectively. There is a significant relationship between family and peer group support on the quality of life of thalassemic adolescents. It is recommended for health workers to improve the quality of life of thalassemic adolescents with a family and peer group support approach. Further studies are needed to confirm the results of this study.
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References
Rujito L. Thalassemia : Genetic Basis and Management Latest . UNSOED Press; 2019.
Paloma I. Thalassemia : A Overview References . Biocity Journal of Pharmacy Bioscience and Clinical Community. 2022;2(1):89–100.
Cappellini M, Cohen A, Eleftheriou A, Piga A, Porter J. Guidelines for the Clinical Management of Thalassemia. Thalassemia International Federation; 2008.
Rahmah, Makiyah SNN. Quality Of Life of Children with Thalassemia in Indonesia: Review. IJNP (Indonesian Journal of Nursing Practices). 2022;6(1):1–7.
Wahidiyat PA, Sari TT, Rahmartani LD, Iskandar SD, Pratanata AM, Yapiy I, et al. Thalassemia in Indonesia. Hemoglobin. 2022 Jan 2;46(1):39–44.
Shanti HD. ANTARA. 2023 [cited 2024 Mar 10]. IDAI sebut pasien thalasemia saat ini didominasi usia remaja. Available from: https://www.antaranews.com/berita/3522735/idai-buat-patient-thalassemia- saat-ini-didomination-usia- juvenile
Dewi FNR. Konsep Diri pada Masa Remaja Akhir dalam Kematangan Karir Siswa. Konseling Edukasi “Journal of Guidance and Counseling.” 2021 Mar 13;5(1).
Angelina N V., Nuryani R, Lindasari SW. Description Image Body on Teenager with Thalassemia. Journal Echo Nursing. 2023;16(1).
Wardhana A, Kharisma B, Sulandari DS. Belanja Pemerintah dan Peningkatan Sumber Daya Manusia di Indonesia. Jurnal Ecodemica Jurnal Ekonomi Manajemen dan Bisnis. 2021 Aug 27;5(2):139–51.
Murgaš F, Petrovič F, Maturkanič P, Kralik R. Happiness or Quality of Life? Or Both? Journal of Education Culture and Society. 2022 Jun 30;13(1):17–36.
Sartika N, Allenidekania. Problem Psychosocial Teenager with Thalassemia Major: Literature Review. World Nursing : Journal Nursing And Health . 2020;8(2).
Jajhara I, Choudhary G, Singh J, Chachan V, Kumar A. A study on quality of life among thalassemic children aged 8 to 18 years. Int J Contemp Pediatrics. 2021 Sep 23;8(10):1667.
Bibi A, Hassa M, Khan SU, Naeem MO, Asnath L. Assessment of the Quality of Life of Children with Beta Thalassemia in Peshawar District : A Cross Sectional Study. Pak J Med Res. 2021;60(3):121–5.
Mulyani L, Rahayu Y, Gunawan A. Hubungan dukungan keluarga dengan harga diri remaja penderita thalasemia di poliklinik thalasemia RSUD ciamis tahun 2018. Jurnal Kesehatan STIKES Muhammadiyah Ciamis. 2020 Dec 4;6(2):29–39.
Lusiani L, Mediani HS, Nurhidayah I. Analysis of Related Factors With Quality Life Child Incumbent Thalassemia Major. Journal STIKes IMC Bintaro . 2017;1(3).
Murianti, Santi E, Damayanti EAF. Support Family with Quality Life . Child Sufferer Thalassemia in Space Child . Nerspedia. 2020;2(1).
Zakiyah I, Mediani HS, Mardiah W. Literature Review: Stress and Mother Life Quality with Thalassemia Children Major Ages 0–18 Years. Journal of Nursing Care. 2018 Dec 28;1(3).
Mediani Henny S, Nurhidayah I, Lusiani L, Panigoro R. Predicting factors impact to quality of life of school age Thalassemic children in Indonesia. Journal Of Advanced Pharmacy Education And Research. 2021;11(1):81–5.
Macdonald G. Development of a Social Support Scale: An Evaluation of Psychometric Properties. Res Soc Work Pract. 1998 Sep 19;8(5):564–76.
Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Healthy and Patient Populations. Med Care. 2001 Aug;39(8):800–12.
Mardhiyah A, Panduragan SL, Mediani HS, Yosep I. Nursing Interventions to Improve Quality of Life Among Children and Adolescents with Thalassemia: A Scoping Review. J Multidiscip Healthc. 2023 Jun;Volume 16:1749–62.
Fatkuriyah L, Hidayati A. Factors Related to Quality of Life among Children with Thalassemia Major: A Literature Review. Nurse and Health: Jurnal Keperawatan. 2022 Jun 25;11(1):47–56.
Mariam I. The Effect of Family Support, Transfusion Compliance and Self-Efficacy on the Quality of Life of Children With Thalassemia. KnE Life Sciences. 2022 Feb 7;
Dhirar N, Khandekar J, Bachani D, Mahto D. Thalassemia Major: how do we improve quality of life? Springerplus. 2016;5(1).
Sargolzaei MS, Jahantigh F, Allahyari J. Interventions to improve Quality of Life in Patients with Major Thalassemia: A Systematic Review. Payesh. 2020;19(6).
Adam S. Quality of life outcomes in thalassaemia patients in Saudi Arabia: A cross-sectional study. Eastern Mediterranean Health Journal. 2019;25(12).
Barnard WM. Parent involvement in elementary school and educational attainment. Child Youth Serv Rev. 2004;26(1).
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 Journal of Hematology and Blood Transfusion. 2021 Apr 19;37(2):280–6.
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 Dec 8;19(1):100.
Americans Psychological Association. Peer Groups. 2023.
Rufaida SA, Wardani IY, Panjaitan RU. Support Peer Social and Problems _ Health Soul on Teenager . Journal Knowledge Nursing Soul. 2021;4(1):175–84.
Seyedoshohadaee M, Khachian A, Haghani H, Sargolzaei MS. Evaluating the Effect of Peer Education on the Hope of Patients with Thalassaemia Major. Sultan Qaboos University Medical Journal [SQUMJ]. 2022 Aug 25;22(3):376–81.
Mardhiyah A, Suzana Mediani H, Letcmi Panduragan S, Yosep I. Psychosocial Problems on Adolescents with Thalassemia Major: A Systematic Scoping Review. KnE Social Sciences. 2023 Aug 4;
John K, Haliasos N. Depression and Thalassemia in children, adolescents and adults. Health Science Journal. 2013;7:239–46.
Salsabilla S, Maryatmi AS. Connection Quality Friendship and Self- Disclosure With Subjective Well-Being On Teenager Class XII girl at SMA Negeri “X” Bekasi City. IKRA-ITH Humanities Journal . 2019;3(3).
Ritianingsih NR, Yuliastati. Peer Supportive Group Therapy Can Increase Quality Life Child with Beta Thalassemia Major at PMI Bogor Hospital. Journal of Health Research . 2014;7(1).
d’Arqom A, Indiastuti DN, Nasution Z. Online peer-group activism for thalassemia health education during the COVID-19 pandemic: a case study from East Java, Indonesia. J Health Res. 2022 Jan 13;36(1):158–65.
Katimenta KY, Agustina Nugrahini, Wenna Araya, Erista Rusana. Hubungan dukungan keluarga dengan kualıtas hıdup anak thalasemıa. Journal Borneo. 2022 Jul 31;2(2):6–11.
Lusiani L. Hubungan Dukungan Keluarga dan Dukungan Teman Sebaya dengan Kualitas Hidup Anak Penyandang Thalasemia Mayor di Rsud Kabupaten Sumedang. National Nursing Conference. 2020 Feb 17;1(1):15.
Yousuf R, Akter S, Wasek SM, Sinha S, Ahmad R, Haque M. Thalassemia: A Review of the Challenges to the Families and Caregivers. Cureus. 2022 Dec 13;
Barua T, Sultana K, Barua D, Karnain R, Chowdhury SB, Chowdhury Arzu MA. Expenditure to Treat Thalassemia- A Major Financial Burden. European Journal of Medical and Health Sciences. 2022 Sep 29;4(5):52–6.
Askaryzadeh Mahani M, Ghasemi M, Arab M, Baniasadi Z, Omidi A, Irani PS. The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: a cross-sectional study. BMC Nurs. 2023;22(1).
Boonchooduang N, Louthrenoo O, Choeyprasert W, Charoenkwan P. Health-Related Quality of Life in Adolescents with Thalassemia. Pediatr Hematol Oncol. 2015;32(5).
Mettananda S, Pathiraja H, Peiris R, Bandara D, De Silva U, Mettananda C, et al. Health related quality of life among children with transfusion dependent β-thalassaemia major and haemoglobin e β-thalassaemia in Sri Lanka: A case control study. Health Qual Life Outcomes. 2019;17(1).
Daud MA. Connection Serum Ferritin with Body Weight and Height Body On Sufferer Thalassemia Β Major. Journal Scientific Sandi Husada Health . 2020;9(2).
Wahidiyat PA, Iskandar SD. The Importance of Maintaining High Pre-Transfusion Hemoglobin Level in Thalassemia Major Patients. eJournal Indonesian Medicine . 2018;6(3).
Ali HM, Muhyi A, Riastiti Y. Hubungan Usia, Kadar Hemoglobin Pretransfusi dan Lama Sakit terhadap Kualitas Hidup Anak Talasemia di Samarinda. Jurnal Sains dan Kesehatan. 2021 Aug 31;3(4):441–7.
Rejeki DSS, Nurhayati N, Supriyanto S, Kartikasari E. Studi Epidemiologi Deskriptif Talasemia. Kesmas: National Public Health Journal. 2012 Oct 1;7(3):139.
Armina A, Pebriyanti DK. Hubungan Kepatuhan Transfusi Darah dan Kelasi Besi dengan Kualitas Hidup Anak Thalasemia. Jurnal Akademika Baiturrahim Jambi. 2021 Sep 18;10(2):306.