Purpose: To predicate the way in which families incorporate the work of managing a child with thalassemia within family life and its outcomes. Methods: A correlational design with a structural equation modeling (SEM) approach was used. A total of 309 parents of children with thalassemia from 4 tertiary care hospitals in Thailand completed our questionnaires. Results: Family life difficulties had a negative influence on the child’s health-related quality of life (HRQOL) (β = −2.23, p < 0.05) and family functioning (β = −0.27, p < 0.05), whereas the child’s daily life (β = 5.06, p < 0.05) and condition management ability (β = −1.86, p < 0.05) had a negative influence on the child’s HRQOL. In the final model, 3 variables including the child’s daily life, condition management ability, and family life difficulty could explain 33 % of variance in the child’s HRQOL (R2 = 0.33). This model showed that only family life difficulty could explain 2 % of variance of family functioning (R2 = 0.02). Conclusions: The study suggests that nurses should design interventions to support families in managing their child’s conditions in order to achieve a good child and family outcomes.
Keywords
Family management, family functioning, health related quality of life, children with thalassemia, parental perception