Mothers’ Awareness And Experiences Of Having A Thalassemic Child: A Qualitative Approach

Ishfaq, Kamran; Hashmi, Mehreen

doi:10.46568/pjass.v2i1.283

Cited by 10 publications

(12 citation statements)

References 13 publications

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“…Parents’ major worries are divided into the following levels: family level which includes child care and communication between healthy and sick children; society level which includes development of patients in the society and their new educational lives. 27 In a study, thalassemia is introduced as a life-threatening disease affecting family members and their activities, thus affecting the management of life and children. Furthermore, thalassemia imposes stresses on the quality of life and health of children and parents because of its severity, treatment burden and long care process, and high levels of parental responsibilities toward children in society and their evolution process.…”

Section: Discussionmentioning

confidence: 99%

Lived experiences of Iranian parents of beta-thalassemia children

Aziz

Firouzkouhi

Ghalgaie

2017

JMDH

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IntroductionThalassemia is a chronic blood disease, which imposes adverse effects on patients and their families. Parents of such patients, given that they had the thalassemia trait, hold themselves responsible for their children’s disease in addition to other difficulties, bear the burden of guilt and hopelessness and worry about the health and future of their children. This study aimed to explore the lived experiences of parents of children with thalassemia.MethodsThe present research was conducted using a descriptive phenomenological approach. A purposive sampling was carried out until data saturation. Participants included 15 parents of children with thalassemia who were referred to the Thalassemia Center of Zabol to perform therapeutic procedures for their child in 2016.ResultsExtracted interviews were analyzed employing Colaizzi’s method, and four main themes were obtained, including “Gray marriage consanguinity”, “Burdened with increased number of thalassemia children”, “Socio-familial worries” and “Inexpressible wishes for having an ideal society”.ConclusionThe results revealed that parents of children with thalassemia experience a wide range of problems in different aspects, such as physical, emotional, mental, social, economic and familial dimensions. Their experiences are valuable and can help in achieving a better understanding of their problems, which in turn can enable the members of the treatment team to play a more active role and the society to have a better understanding of this disease.

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Section: Discussionmentioning

confidence: 99%

Lived experiences of Iranian parents of beta-thalassemia children

Aziz

Firouzkouhi

Ghalgaie

2017

JMDH

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“…In Pakistan over 5000 children with thalassemia major are born every year. Pakistan carries a risk of 6% of the population as heterozygous carriers serving as potential source of spread of thalassemia major 6…”

Section: Introductionmentioning

confidence: 99%

Sociodemographic determinants associated with parental knowledge of screening services for thalassemia major in Lahore

Manzoor¹,

Zakar

2019

Pak J Med Sci

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Objective: To assess the sociodemographic factors affecting parental knowledge regarding availability of screening services for thalassemia major. Methods: A cross sectional study was conducted among biological parents of thalassemic children at three registered centers of blood transfusion in Lahore. A sample of 186 parents was selected through systematic random sampling. A pretested questionnaire was used to collect data. IRB clearance was obtained and informed consent was taken before data collection. Data was analyzed at SPSS version 23 and chi square test was applied and p value was fixed at ≤ 0.05 as significant. Results: Parents of registered thalassemic children have adequate knowledge about Disease transmission and screening services. 91% of the participants knew that thalassemia major gets transmitted through parents. Cousin marriage was mentioned as a source of transmission by 77% of the participants. 91% of the parents knew about prenatal screening and 89% about premarital screening. Knowledge of parents was significantly associated with male gender, higher education and income. Conclusion: Male gender, higher education and income are associated with better knowledge of parents. How to cite this:Manzoor I, Zakar R. Sociodemographic determinants associated with parental knowledge of screening services for thalassemia major in Lahore. Pak J Med Sci. 2019;35(2):---------. doi: https://doi.org/10.12669/pjms.35.2.613 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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“…Studies have shown that some parents of thalassemia patients are not aware of their carrier status prior to marriage [ 4 ]. In addition, it was found that married couples often had inadequate knowledge related to the genetic nature of thalassemia and did not undergo pre-marital screening [ 23 ].…”

Section: Discussionmentioning

confidence: 99%

Concerns of Thalassemia Patients, Carriers, and their Caregivers in Malaysia: Text Mining Information Shared on Social Media

2021

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Objectives: The main aim of this study was to use text mining on social media to analyze information and gain insight into the health-related concerns of thalassemia patients, thalassemia carriers, and their caregivers.Methods: Posts from two Facebook groups whose members consisted of thalassemia patients, thalassemia carriers, and caregivers in Malaysia were extracted using the Data Miner tool. In this study, a new framework known as Malay-English social media text pre-processing was proposed for performing the steps of pre-processing the noisy mixed language (Malay-English language) of social media posts. Topic modeling was used to identify hidden topics within posts shared among members. Three different topic models—latent Dirichlet allocation (LDA) in GenSim, LDA in MALLET, and latent semantic analysis—were applied to the dataset with and without stemming using Python.Results: LDA in MALLET without stemming was found to be the best topic model for this dataset. Eight topics were identified within the posts shared by members. Of those eight topics, four were newly discovered by this study, and four others corresponded to the findings of previous studies that used an interview approach.Conclusions: Topic 2 (the challenges faced by thalassemia patients) was found to be the topic with the highest attention and engagement. Healthcare practitioners and other concerned parties should make an effort to build a stronger support system related to this issue for those affected by thalassemia.

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Mothers’ Awareness And Experiences Of Having A Thalassemic Child: A Qualitative Approach

Cited by 10 publications

References 13 publications

Lived experiences of Iranian parents of beta-thalassemia children

Lived experiences of Iranian parents of beta-thalassemia children

Sociodemographic determinants associated with parental knowledge of screening services for thalassemia major in Lahore

Concerns of Thalassemia Patients, Carriers, and their Caregivers in Malaysia: Text Mining Information Shared on Social Media

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