RESUMO
PURPOSE: Studies from different countries show that caregivers of children with haematological cancer receiving chemotherapy encounter substantial distress when witnessing their children's suffering from the illness and chemotherapy side effects, alongside experiencing psychosocial problems and financial difficulties. However, no studies for this are available from Ethiopia in its specific cultural background and health care system. Thus, this study aimed to explore and bring into light the experiences of Ethiopian family caregivers of children with haematological malignancies receiving chemotherapy. METHODS: A qualitative descriptive study was conducted using a maximum variation purposive sampling method among 20 caregivers. Semi-structured in-depth face-to-face interviews were conducted until no new themes discovered. The data were analysed through qualitative thematic analysis. RESULTS: Participants believed cancer comes from different reasons and chemotherapy is ineffective in curing cancer. They identified various chemotherapy-related side effects, and psychosocial problems. The lack of health insurance, loss of job or income, and high cost of treatments were the major financial challenges. Adhering to treatments, acceptance and reassurance, religious and spiritual therapies, traditional medicine, and a support system were the major coping strategies. They had needs for improved support in information and education, psychosocial support, and in the availability of medications. CONCLUSIONS: Systematic health assessment, provision of targeted information and education, psychosocial support, nursing care respecting the caregivers' positive coping strategies, improvement in chemotherapy medication availability, and facilitating connections with supporting organisations would help improve child outcomes and address caregiver needs.
RESUMO
BACKGROUND: Childhood cancer negatively impacts a child's physical, mental, and behavioural health and significantly affects their health-related quality of life. The Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL™ 4.0 GCS) is one of the most commonly used measures of the quality of life in children. However, the Amharic version of PedsQL™ 4.0 GCS has not been validated in a paediatric oncology population. This study aimed to translate and evaluate the psychometric properties of the Amharic PedsQL™ 4.0 GCS (PedsQL™ 4.0 GCS (A)) for Ethiopian children with cancer. METHODS: A descriptive cross-sectional study was conducted among children aged 8-18 years with any type of cancer across the cancer trajectory. Cronbach's alpha and intraclass correlation coefficient were computed to determine the internal consistency and test-retest reliability of the scale. The convergent validity was established by examining the correlation of the PedsQL™ 4.0 GCS (A) with the Amharic version of the Revised Child Anxiety and Depression Scale (RCADS-25(A)). Factorial validity was evaluated by conducting a confirmatory factor analysis. RESULTS: The study included 142 participants with childhood cancer. PedsQL™ 4.0 GCS (A) had good validity and reliability. It demonstrated high internal consistency with a Cronbach's alpha of 0.96 for the scale and 0.82-0.95 for the subscales. The intraclass correlation coefficient for the scale was 0.9 and that for the subscales was 0.76-0.90. The PedsQL™ 4.0 GCS (A) was highly correlated with RCADS-25 (A) (r = - 0.97, p < 0.001), supporting its convergent validity. The four-factor structure of the model fitted the data satisfactorily (χ2/df = 1.28; CFI = 0.97; TLI = 0.97; RMSEA = 0.05; SRMR = 0.05), supporting the factorial validity of the PedsQL™ 4.0 GCS (A). CONCLUSION: The PedsQL™ 4.0 GCS (A) demonstrates desirable psychometric properties for assessing quality of life among Ethiopian children with cancer. The scale can be used in clinical settings for assessing and evaluating quality of life in children with cancer. The use of parent-report versions and studies in those with different health conditions and healthy populations are necessary to further establish the psychometric properties of the PedsQL™ 4.0 GCS (A).