Level of knowledge and awareness among parents regarding the care of children with thalassaemia
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https://orcid.org/0000-0002-4320-8712
Zerah Taising Deena Clare Thomas Rose A Nain
Abstract
Background This study assessed parental knowledge and awareness of children with thalassemia. Thalassemia care among 65 parents at a Kota Kinabalu hospital focuses on parental knowledge and awareness of children with thalassemia. The objectives were to identify parents' level of knowledge of thalassemia care and assess their awareness of specific care needs.
Methods: This was a descriptive, cross-sectional study of the thalassemia families of patients at Likas Women and Children's Hospital, Kota Kinabalu, Sabah. Using random sampling. The study involved 65 respondents from Sabah Women and Children in Kota Kinabalu, Sabah. Data from questionnaires and tests were processed using SPSS version 24, with descriptive statistics analysing frequency and percentage, expressed as mean ± standard deviation.
Results Most respondents had a high level of knowledge about thalassemia, an inherited disease caused by insufficient red blood cell supply. They understood that untreated conditions could deteriorate thalassemia patients but could lead normal lives with proper therapy. They also knew that thalassemia could be detected through blood tests and that blood donation could be beneficial. However, they had moderate knowledge of the connection between thalassemia and anaemia, blood transfusions as the only treatment, and their ability to identify and avoid thalassemia during pregnancy.
Conclusion This study emphasises the need for education, community engagement, and healthcare involvement to enhance the understanding and support of individuals with thalassemia, suggesting that comprehensive strategies, including education programs and collaborations with local organisations, can be implemented.
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Copyright (c) 2024 Johari Daud Makajil, Zerah Taising, Deena Clare Thomas, Rose A Nain
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References
Mariam, “The Effect of Family Support, Transfusion Compliance and Self-Efficacy on the Quality of Life of Children With Thalassemia,” KnE Life Sci., 2022, doi: 10.18502/kls.v7i2.10293.
Thiyagarajan, M. Bagavandas, and K. Kosalram, “Assessing the role of family well-being on the quality of life of Indian children with thalassemia,” BMC Pediatr., vol. 19, no. 1, 2019, doi: 10.1186/s12887-019-1466-y.
Kementerian Kesihatan Malaysia, “Laporan Tahunan Kementerian Kesihatan Malaysia 2020,” 2020.
Bank et al., “Petunjuk Kesihatan 2020,” 2020. doi: ISSN 1511-4589.
Malaysia Ministry of Health, “Indicators for Monitoring & Evaluation of Strategy Health for All 2020,” Malaysia Minist. Heal., vol. 12, p. 149, 2020, doi: ISSN 1511-4589.
I., G. G., and D. S., “Hyperferritinemia in liver disease-role of genetic testing,” Hepatol. Int., vol. 12, no. 2, 2018.
Y. H. Hew, A. Q. Blebil, J. A. Dujaili, and T. M. Khan, “Assessment of knowledge and practices of parents regarding childhood fever management in Kuala Lumpur, Malaysia,” Drugs Ther. Perspect., vol. 35, no. 1, 2019, doi: 10.1007/s40267-018-0564-5.
S. M. H. Darwish, N. Ahmed, and A. M. Al-Ahmari, “Research Methodology,” in Advanced Structured Materials, vol. 68, 2017.
R. Rahmah and S. N. N. Makiyah, “Quality Of Life of Children with Thalassemia in Indonesia: Review,” IJNP (Indonesian J. Nurs. Pract., vol. 6, no. 1, 2022, doi: 10.18196/ijnp.v6i1.10477.
F. Fazal, M. Arshad, H. Mustafa, M. E. U. Rehman, U. Tanveer, and S. Hamid, “Assessment of level of Awareness regarding Thalassemia Major among Parents of Affected Children,” J. Rawalpindi Med. Coll., vol. 25, no. 1, 2021, doi: 10.37939/jrmc.v25i1.1736.
S. Rudra, P. Chakrabarty, M. A. Hossain, M. J. Ripon, M. Rudra, and T. T. Mirza, “Awareness among Parents of β-Thalassemia Major Patients Regarding Prenatal Diagnosis and Premarital Screening in Day Care Centre of Transfusion Medicine Department,” Mymensingh Med. J., vol. 25, no. 1, 2016.
F. Arif, J. Fayyaz, and A. Hamid, “Awareness among parents of children with thalassemia major,” J. Pak. Med. Assoc., vol. 58, no. 11, 2008.
K. Ishfaq, S. Maqsood, I. Shah, and B. Fyiaz, “Awareness Among The Parents Of Children With Thalassemia Major, Regarding Premarital Screening And Prenatal Diagnosis,” Pakistan J. Soc. Issues, vol. XI, 2020.
M. Musa Meah, Z. Choudhury, M. Bani Yeamin, B. Chandra Das, and J. Das Sharma, “Assessment of Awareness Among Parents of Children with Thalassemia Major in Bangladesh: A Hospital Based Study,” Am. J. Pediatr., vol. 7, no. 3, 2021, doi: 10.11648/j.ajp.20210703.13.
J. Goyal, P. Hpapani, and H. Gagiya, “Awareness among parents of children with thalassemia major from Western India,” Int. J. Med. Sci. Public Heal., vol. 4, no. 10, 2015, doi: 10.5455/ijmsph.2015.17042015279.
Jain, S. Singla, S. Lakhanpal, and I. Jain, “A cross-sectional study of awareness and practices regarding thalassemia among parents of thalassemic children,” J. Fam. Med. Prim. Care, vol. 9, no. 4, 2020, doi: 10.4103/jfmpc.jfmpc_1035_19.
S. K. PV and D. P. Pujari, “Knowledge, attitude, practices among parents of β thalassemia children regarding thalassemia,” Int. J. Adv. Community Med., vol. 3, no. 1, 2020, doi: 10.33545/comed.2020.v3.i1a.106.
R. Samararathna, A. V. C. Gunaratne, and S. Mettananda, “Knowledge and practices on childhood anaemia, thalassaemia and iron deficiency among mothers of children aged between 6 and 59 months in a suburban area of Sri Lanka,” J. Heal. Popul. Nutr., vol. 41, no. 1, 2022, doi: 10.1186/s41043-022-00341-7.
S. Mettananda, “Screening of Children with Anaemia for Iron Deficiency and Thalassaemia Trait Provides an Opportunity for Thalassaemia Prevention in Sri Lanka,” Sri Lanka J. Child Heal., vol. 50, no. 2, 2021, doi: 10.4038/sljch.v50i2.9597.
S. Bharati, M. Pal, S. Chakrabarty, and P. Bharati, “Socioeconomic determinants of iron-deficiency anemia among children aged 6 to 59 months in India,” Asia-Pacific J. Public Heal., vol. 27, no. 2, 2015, doi: 10.1177/1010539513491417.
M. Z. Aljulifi et al., “Awareness and Acceptance of Premarital Screening Test and Genetic Counseling Program in Riyadh area, Saudi Arabia,” Pakistan J. Med. Heal. Sci., vol. 16, no. 2, 2022, doi: 10.53350/pjmhs22162875.
M. Pujani, V. Chauhan, C. Agarwal, D. Rana, K. Singh, and S. Dixit, “Knowledge and attitude among Indian medical students towards thalassemia: a study in Delhi NCR,” Int. J. Res. Med. Sci., vol. 5, no. 10, 2017, doi: 10.18203/2320-6012.ijrms20174579.
P., R. Rani, and M. Nebhinani, “Knowledge, burden and coping strategies among caregivers of thalassemic children attending thalassemia day care centre of selected hospital, Jodhpur,” Int. J. Community Med. Public Heal., vol. 8, no. 6, 2021, doi: 10.18203/2394-6040.ijcmph20211996.
T. Hanprasertpong et al., “Survey on knowledge, attitude, acceptance and related factors among pregnant women in Thailand regarding antenatal thalassaemia screening,” J. Obstet. Gynaecol. (Lahore)., vol. 38, no. 7, 2018, doi: 10.1080/01443615.2018.1443060.
L. Singh, M. Wade, and M. Agrawal, “Awareness about thalassemia and feasibility of cascade screening in families of thalassemia major patients,” Int. J. Contemp. Pediatr., vol. 6, no. 6, 2019, doi: 10.18203/2349-3291.ijcp20194582.
Kmaldeep, “Knowledge, attitude and practices of parents of thalassemic children undergoing treatment at thalassemia day care centre of pediatrics department, Govt. Medical College and Rajindra Hospital, Patiala,” IP Arch. Cytol. Histopathol. Res., vol. 7, no. 4, 2022, doi: 10.18231/j.achr.2022.052.
Al Hajeri and S. Al Arrayed, “Public awareness of beta Thalassemia in Bahrain,” Bahrain Med. Bull., vol. 34, no. 1, 2012.
Politis, C. Richardson, and J. G. Yfantopoulos, “Public knowledge of thalassemia in Greece and current concepts of the social status of the thalassemic patients,” Soc. Sci. Med., vol. 32, no. 1, 1991, doi: 10.1016/0277-9536(91)90127-X.
S. Naz, A. Jan, and Shabnam, “Assesment of Thalassemic Children’ Parents Knowledge Regarding Thalassemia,” J. Farkhanda Inst. Nurs. Public Heal., vol. 2, no. 1, 2022, doi: 10.37762/jfinph.31.
V. R. Rao, G. Gupta, K. Saroja, and S. Jain, “Identification and Development of a High-Risk District Model in the Prevention of β-Thalassemia in Telangana State, India,” Hemoglobin, vol. 44, no. 5, 2020, doi: 10.1080/03630269.2020.1814805.
V. B. Sathenahalli, G. R. R. Murthy, N. Gouda, and S. K. Shivanna, “Assessment of quality of life in transfusion dependent thalassemic children - need to address parents/care givers,” Int. J. Contemp. Pediatr., vol. 8, no. 1, 2020, doi: 10.18203/2349-3291.ijcp20205522.
K. Ishfaq, R. Bhatti, and S. Bin Naeem, “Mothers’ Awareness and Experiences of Having a Thalassemic Child: a Qualitative Approach,” SOCIOINT14 Int. Conf. Soc. Sci. Humanit., vol. 35, no. 1, 2014.