Theorizing Beta Thalassemia Major: an Overview of Health Sociology

Rashid, Muhammad Abo ul Hassan; Abbasi, Saif

doi:10.17583/rimcis.2020.5113

Cited by 3 publications

(4 citation statements)

References 67 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“… 62 , 63 This is supported by previous studies which show that parents lack knowledge about thalassemia care, so directions from nurses are needed to increase the role of parents and adolescents themselves in providing care. 60 , 64 , 65 …”

Section: Discussionmentioning

confidence: 99%

“… 65 , 71 In addition, other studies also show that there is a relationship between knowledge and quality of life for adolescents with thalassemia. 48 , 64 Health Education is provided by nurses regarding various information such as definitions, factors, and independent efforts made in care. These various educations can increase patient confidence in caring for themselves.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

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

Mardhiyah¹,

Panduragan²,

Mediani³

et al. 2023

JMDH

View full text Add to dashboard Cite

Thalassemia is an inherited blood disorder affecting hemoglobin synthesis which leads to chronic hemolysis that can reduce the quality of life of children with it due to the disease and the treatment given. However, the intervention still focuses on handling physical problems due to thalassemia. So that an intervention that focuses on improving the quality of life of children with thalassemia is needed. The purpose of this study is to explore interventions that could improve the quality of life of children with thalassemia. A scoping review study design was used in this study. The databases used are CINAHL, PubMed, and Scopus. Articles published from last five years (2018–2022), open access full-text, in English, and with the type of randomized controlled trial (RCT). The keywords used in English are “thalassemia or beta-thalassemia” AND “quality of life OR Life Quality OR Health-Related Quality of Life” AND “nursing intervention OR nursing care”. From ten articles analyzed, we found five types of nursing intervention: Health Care Instructions, Psychological Program, Educational Program, Counseling Program, and Self-care Model, which were carried out for 1–7 months. The articles in this study are from Egypt and Iran. The sample in this study is the range of 20–173 respondents. The thalassemia patients in this study were in the age range of 7–35 years, but the average age of the patients was in their 20s. Nursing intervention can potentially improve the quality of life in children and adolescents with thalassemia. Nurses need to pay attention to the patient’s age, family and patient knowledge about the disease, length of stay, and the patient’s physical and psychological condition in providing nursing care to patients with thalassemia. Implementation of nursing is given by paying attention to the stages of child development and involving the family. Nursing interventions can be carried out by nurses or nurses teach families to intervene at home. This nursing intervention has the potential to improve the quality of life of patients with thalassemia while still taking into account the conditions of the patient and family in a comprehensive manner.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

Mardhiyah¹,

Panduragan²,

Mediani³

et al. 2023

JMDH

View full text Add to dashboard Cite

show abstract

“…Pertama, adalah norma subjektif (subjective norms), kedua persepsi individu bahwa bahwa perilakunya mampu dikontrol (perceived control over the behavior), ketiga, pembiasaan (intention). Pembiasaan dan upaya yang terus-menerus dengan memelihara harapan (expectancy-value models) akan berinteraksi dengan dua faktor sebelumnya, sampai menghasilkan perilaku dan mampu melakukan action (bertindak) secara menetap (Rashid & Abbasi, 2020;Valizadeh et al, 2021). Kesimpulannya, menurut teori ini pengetahuan dan kesadaran saja tidak cukup.…”

Section: Pembahasanunclassified

Hubungan Antara Tingkat Kesadaran Orang Tua dengan Perilaku Pencegahan Berulang Thalasemia

Mardhiyah,

Sriati,

Prawesti

et al. 2023

J. Obs. J. Pendidik. Anak Usia Dini

View full text Add to dashboard Cite

Prevalensi penyakit thalassemia di Jawa Barat mengalami peningkatan setiap tahunnya. Program pencegahan sekunder thalasemia yaitu pencegahan pada keluarga yang beresiko atau keluarga yang dicurigai sebagai pembawa sifat untuk mencegah terjadi kembali kelahiran dengan thalasemia mayor. Tujuan penelitian ini untuk mengidentifikasi hubungan antara kesadaran orang tua anak penderita thalasemia dengan prilaku pencegahan thalasemia. Desain penelitian ini adalah cross-sectional study dengan sampel sejumlah 114 orang tua anak dengan thalasemia. Pengumpulan data menggunakan instrumen kesadaran dan prilaku orang tua dalam pencegahan talasemia. Analisis data menggunakan uji korelasional melalui uji Chi Square. Hasil penelitian ini menunjukkan bahwa tidak terdapat hubungan antara kesadaran orang tua dengan prilaku pencegahan thalassemia, kemungkinan adanya faktor-faktor penghambat orang tua yang hampir setengahnya sudah mempunyai kesadaran tetapi tidak berprilaku pencegahan thalasemia dikarenakan biaya, kurang memahami prosedur, takut, masih berharap punya anak kembali. Saran penelitian ini adalah orang tua perlu meningkatkan kesadaran dengan mengembangkan intervensi atau strategi pencegahan thalasemia melalui konseling dan peer support group pada orang tua.

show abstract

“…Although the disease prompts due to biological abnormalities of human globin and transmits from parents to their children but there are numerous social factors which contribute to the prevalence of thalassemia along with the outcomes such as psychological abnormalities and physical disabilities (Messina et al 2008 ). Social Model of health and illness which aims to denote the attention of researchers and policy makers towards the social causes and practices of any biological disorder or epidemic, encompasses social factors including socioeconomic status, cultural practices, sanitation and hygiene to determine the state of being healthy or not (Rashid and Abbasi 2020 ). The prevalence of thalassemia highly depends upon consanguineous marriages, traditional/religious beliefs and practices for the management and treatment of disease (Platania et al 2017 ).…”

Section: Introductionmentioning

confidence: 99%

Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major

2020

Self Cite

View full text Add to dashboard Cite

The study investigates the socio-religious factors in the propagation of genetically inherited disease of Beta thalassemia. The disorder which reportedly has a significant protraction through repeated cousin marriages results in the social maladjustment of the parents of the sick children due to constant depression, anxiety, and weak social interaction and may lead to social isolation as well. This research aims to find out the significant effect of socio-religious trends on psychosocial burden of beta thalassemia major among cousin and non-cousin couples in the province of Punjab in Pakistan. It takes a sample of 932 parents of sick children, among whom 735 were married with cousins and 197 with non-cousins, for data collection. The findings reveal that inadequate knowledge of the disease, insufficient or misdirected social support, stigmatization, and marriage breakups caused by the disease, superstitions, and misinterpretations of religion and the subsequent practices accordingly as significant predictors of psychosocial burden of beta thalassemia major among non-cousins and cousin couples. Additionally, it also finds patriarchy as only significant predictors of outcome variable among cousin couples.

show abstract

Theorizing Beta Thalassemia Major: an Overview of Health Sociology

Cited by 3 publications

References 67 publications

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

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

Hubungan Antara Tingkat Kesadaran Orang Tua dengan Perilaku Pencegahan Berulang Thalasemia

Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major

Contact Info

Product

Resources

About