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Nanang Saprudin
Universitas Bhakti Husada Indonesia

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Child, Parental, and Family-Related Characteristics Associated with Caregiver Burden Among Parents of Children With β-Thalassemia: A Cross-Sectional Study Nanang Saprudin; Nanang Saprudin
Holistic Nursing Plus Vol. 4 No. 2 (2026): Holistic Nursing Plus
Publisher : Sahabat Publikasi Kuu

Show Abstract | Download Original | Original Source | Check in Google Scholar | DOI: 10.58439/hnp.v4i2.623

Abstract

Background: Parents of children with transfusion-dependent β-thalassemia experience continuing treatment-related, emotional, and practical caregiving demands. Purpose: To examine associations between child-, parental-, and family-related characteristics and parent-reported caregiver burden among parents of children with β-thalassemia receiving routine transfusion therapy. Methods: This cross-sectional study included 104 parents consecutively recruited at a tertiary referral hospital in Indonesia from August 2025 to February 2026. Caregiver burden was assessed using an 8-item instrument adapted from the Caregiver Strain Index. Variables meeting a prespecified bivariate screening criterion of p < .25 were entered simultaneously into multiple linear regression. Bootstrap estimation used 2,000 resamples. Sensitivity analysis excluded the observation with the highest centered leverage (.501). Results: Mean caregiver burden was 20.10 (SD = 4.94). The original model was significant, F (8, 95) = 3.569, p = .001, explaining 23.1% of the variance (adjusted R² = .166). Compared with homemaker/unemployed mothers, burden was lower among self-employed (B = −4.498, p = .009) and civil-servant mothers (B = −8.020, p = .001). After sensitivity analysis, the overall model remained significant, F (7, 94) = 3.111, p = .005, whereas the self-employment association was no longer significant (B = −4.461, p = .187). Conclusions: The overall multivariable model was associated with caregiver burden, but individual associations were not consistently robust. Maternal employment warrants cautious interpretation because of very small subgroup sizes. Family-centered nursing assessment should consider employment within the broader caregiving and family context.
Psychological Impact and Quality of Life in Patients with Transfusion-Dependent Thalassemia and Their Families: A Systematic Review Nanang Saprudin
Holistic Nursing Plus Vol. 4 No. 2 (2026): Holistic Nursing Plus
Publisher : Sahabat Publikasi Kuu

Show Abstract | Download Original | Original Source | Check in Google Scholar | DOI: 10.58439/hnp.v4i2.635

Abstract

Background: Transfusion-dependent thalassemia is a chronic blood disorder that can affect psychological well-being and quality of life among patients and their families. Purpose: This systematic review examined the psychological challenges and quality-of-life concerns experienced by patients with transfusion-dependent thalassemia and their families. Methods: A systematic review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework. Scopus, ProQuest, ScienceDirect, and Taylor & Francis were searched for relevant studies published from 2022 through December 2024. Eligible studies used standardized, validated instruments to assess psychological health or quality of life in patients with transfusion-dependent thalassemia and their families and employed a cross-sectional design. Results: Eleven studies met the inclusion criteria. Patients experienced psychological difficulties, including anxiety, depression, panic symptoms, social phobia, and problems with self-concept. Children also exhibited behavioral difficulties, attention-related problems, and challenges in peer relationships. Quality-of-life concerns included impaired school functioning, emotional well-being, social participation, physical health, pain, fatigue, and work limitations. Families and caregivers experienced emotional distress, financial strain, and challenges associated with regular blood transfusions. Caregivers also reported feelings of discouragement and powerlessness, underscoring the demands of long-term care. Conclusions: Transfusion-dependent thalassemia is associated with psychological challenges and reduced quality of life among patients and their families. Comprehensive, family-centered support may help address these multidimensional needs. Further research should evaluate interventions that support psychological well-being and quality of life in both patients and caregivers.