Thalassemia is a major genetic blood disorder that considered as a public health problem in Indonesia. Yet, little is known about affected individuals thalassemic children and parents overall experiences with and perceptions of thalassemia mayor in Indonesia. This study aimed to explore the concerns, beliefs, feelings and needs of mothers' who have a thalassemic child. A total of (N=24) mothers' were chosen as participants. Focus Group Discussion (FGD) was carried out to better elucidate the mothers' perceptions of their needs and concerns. A semi-structure focus group moderator's guide corresponding to the research questions was developed. To gain in-depth understanding, questions were divided in four major domains which were (i) Perceptions about child disease, (ii) Knowledge about thalassemia and its treatment, (iii) Thalassemia impact on child and family, and (iv) Needs and future concerns. Transcripts were thematically coded according to the research themes that emerged from the data, and the themes were further sorted into subthemes. The finding of this study indicates significant impact of thalassemic children on their families in terms of emotional well-being, financial burden and social impact. Mother's education level was very low about Thalassemia. Mother also expressed their needs for more information about thalassemia and its treatment, social, professional support, and financial support. Results of this study provided a portrait of the reality that thalassemia has a significant impact on children and their families. A holistic approach should be carried out while caring with thalassemic children and their families. Nurses and health care professionals should explore the feelings, concerns and needs of mothers' who have thalassemic children and eventually provide appropriate care plans that alleviate their suffering.
Low hemoglobin (Hb) or anemia is common among pregnant women in developing countries which may cause adverse pregnancy outcomes and maternal deaths. Our study aimed to assess Hb level measured by midwives in primary health care facility at rural area of Jatinangor, Indonesia, and to explore whether the anemia was due to iron deficiency (IDA) or β-thalassemia trait (β-TT). Pregnant women (n = 105) had finger prick test for Hb level during a regular antenatal care examination from October to November 2016. Hb level by finger prick test was compared with venous blood, measured by complete blood count (CBC). Indices including MCV and MCH and indices of Shine & Lal, Mentzer, Srivastava, Engels & Frase, Ehsani, and Sirdah were analyzed to differentiate anemia due to IDA and anemia due to suspect β-TT. HbA2 was measured to confirm β-TT. Anemic pregnant women were found in 86.7% by finger prick test compared to 21.9% (n = 23) by CBC. The prevalence of β-TT in our study was 5.7%. Hb measurement among pregnant women in low resource area is highly important; however, finger prick test in this study showed a high frequency of anemia which may lead to iron oversupplementation. A standard CBC is encouraged; MCV and MCH would help midwives to identify β-TT.
Killer cell immunoglobulin-like receptors (KIRs) regulate the activity of natural killer and T cells through interactions with specific human leucocyte antigen class I molecules on target cells. Population studies performed over the last several years have established that KIR gene frequencies (GFs) and genotype content vary considerably among different ethnic groups, indicating the extent of KIR diversity, some of which have also shown the effect of the presence or absence of specific KIR genes in human disease. We have determined the frequencies of 16 KIR genes and pseudogenes and genotypes in 193 Indonesian individuals from Java, East Timor, Irian Jaya (western half of the island of New Guinea) and Kalimantan provinces of Indonesian Borneo. All 16 KIR genes were observed in all four populations. Variation in GFs between populations was observed, except for KIR2DL4, KIR3DL2, KIR3DL3, KIR2DP1 and KIR3DP1 genes, which were present in every individual tested. When comparing KIR GFs between populations, both principal component analysis and a phylogenetic tree showed close clustering of the Kalimantan and Javanese populations, while Irianese populations were clearly separated from the other three populations. Our results indicate a high level of KIR polymorphism in Indonesian populations that probably reflects the large geographical spread of the Indonesian archipelago and the complex evolutionary history and population migration in this region.
Background Iron deficiency anemia (IDA) in pregnant women is common, and iron supplementation is given during pregnancy to reduce birth complication. This study aimed to explore the prevalence of anemia and type of anemia after iron supplementation among pregnant women in the eastern part of Indonesia. Methods A cross-sectional study design was conducted between January and March 2019 in three Primary Health Care (PHC) facilities at Kupang, West Timor. After consent, pregnant women who had taken their iron supplementation for at least 3 months were asked for iron pills intake by using a self-designed questionnaire and by counting the pills leftover. Complete blood count examination was performed, and the type of anemia was assessed using Shine and Lal index (SLI; MCV ∗ MCV ∗ MCH/100) to determine whether anemia was due to iron deficiency or β-thalassemia trait (β-TT). In a subset of iron tablets distributed in the PHCs, Fe-concentration was measured. Results Of 102 pregnant women included, only 25.5% had taken the pills with a pill count of >80%. Interestingly, Fe-concentration in the pills from three different PHC facilities varied between 75% and 100%. After iron supplementation, however, anemia was detected in 34.3%, and based on SLI, 14.7% was suspected because of iron deficiency and 19.6% was suspective of β-TT. Of note, nonanemic pregnant women (17.6%) had also low SLI, suggesting β-TT or other hemoglobinopathies. Conclusion Assessment of Shine and Lal index as the first step to screen the type of anemia in pregnant women from a limited area is of potential value, especially because Indonesia is located in the thalassemia belt area. An integrative approach and counseling among pregnant women with β-TT and their partners will increase thalassemia awareness and optimal birth management.
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