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

Abstract

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.

Gender Disparities in Psychological Disturbances and Quality of Life Among Adolescent and Adult Patients with Thalassemia: A Review

“…Painful and prolonged treatments of thalassemia, physical abnormalities, increased risk of death, and activity limitation expose the patients to mental health and emotional conditions, causing anxiety, depression, and deterioration QoL. 45 , 46 …”

“…It also can increase QoL. 46 Studies showed that patients with good psychosocial status demonstrated better treatment adherence, including regular blood transfusion and iron-chelating therapy. 16 , 53 ,65…”

“…Painful and prolonged treatments of thalassemia, physical abnormalities, increased risk of death, and activity limitation expose the patients to mental health and emotional conditions, causing anxiety, depression, and deterioration QoL. 45,46 Previous studies found that anxiety is prevalent in patients with thalassemia. Thalassemia as a chronic disease can lead to anxiety and worry as other chronic illnesses.…”

“…It also can increase QoL. 46 Studies showed that patients with good psychosocial status demonstrated better treatment adherence, including regular blood transfusion and iron-chelating therapy. 16,53,65 Although females seem to have higher anxiety or depression symptoms and tend to report poorer QoL, there were some limitations of the studies in this review to be considered.…”

Hubungan Antara Tingkat Kesadaran Orang Tua dengan Perilaku Pencegahan Berulang Thalasemia

“…Hal ini didukung penelitian sebelumnya yang menunjukkanbahwa biaya merupakan kendala yang utama (Angastiniotis & Lobitz, 2019). Begitu pula hasil penelitian kualitatif bahwa biaya merupakan faktor yang menghambat prilaku pencegahan selain adanya keyakinan bahwa dirinya bukan carier, ketakutan mengetahui penyakitnya, takut terhadap prosedur, masih ingin punya anak kembali (Kavitha & Padmaja, 2019;Mardhiyah et al, 2023).…”