An Exploratory Qualitative Study on Indonesian Mothers’ Needs and Concerns about Having a Thalassemic Child and Its Treatment

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An Exploratory Qualitative Study on Indonesian Mothers’ Needs and Concerns about Having a Thalassemic Child and Its Treatment

September 12, 2021 Medicine and Medical Science 0

Thalassemia is a prevalent genetic blood ailment in Indonesia that is considered a public health issue. In Indonesia, however, little is known about thalassemic children’s and parents’ general experiences with and perceptions of thalassemia. The goal of this study was to look at the concerns, beliefs, sentiments, and needs of moms who have a kid who is thalassemic. Participants were recruited from a total of (N=24) mothers. The purpose of the Focus Group Discussion (FGD) was to better understand the moms’ perspectives of their needs and concerns. A semi-structured focus group moderator’s guide was created to correlate to the study questions. Questions were divided into two groups in order to acquire a better understanding. I Kid disease perceptions, (ii) Thalassemia knowledge and therapy, (iii) Thalassemia impact on the child and family, and (iv) Needs and future concerns Transcripts were categorised thematically based on the study themes that emerged from the data, and the themes were further subdivided. The results of this study show that thalassemic children have a major influence on their family in terms of emotional well-being, financial load, and social impact. Mother’s knowledge of Thalassemia was pretty limited. Mothers also expressed a need for additional knowledge about thalassemia and its treatment, as well as social, professional, and financial assistance. The findings of this research revealed that thalassemia has a substantial influence on children and their families. When caring for thalassemic children and their families, a holistic approach should be used. Nurses and other health-care professionals should investigate the feelings, fears, and needs of moms who have thalassemic children in order to develop appropriate treatment plans that will help them feel better.

Author (S) Details

Henny Suzana Mediani
Department of Pediatric Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung, Indonesia.

Ikeu Nurhidayah
Department of Pediatric Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung, Indonesia.

Ai Mardhiyah
Department of Pediatric Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung, Indonesia.

Ramdan Panigoro
Department of Biochemistry and Molecular Biology, Faculty of Medicine, Universitas Padjadjaran, Bandung, Indonesia.

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