A longitudinal study of supportive care needs among Chinese parents of children with acute lymphoblastic leukemia

一项关于中国急性淋巴细胞白血病患儿父母支持性护理需求的纵向研究

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Abstract

OBJECTIVE: To determine parents' supportive care needs trajectories over the first 8 months following their children's diagnosis and identify the predictors of these trajectories. METHODS: Overall, 100/112 Chinese parents of children newly diagnosed with ALL were recruited. The parents' supportive care needs were tracked at four key time points when the needs were most likely to change: post-diagnosis, induction remission phase, consolidation therapy phase, and post-acute treatment. Latent class growth modeling (LCGM) or growth mixture model (GMM) was used to identify trajectories within each of six needs domains of supportive care needs. Logistic regression was used to identify factors predicting trajectory patterns. RESULTS: Overall, parents' supportive care needs peaked immediately after diagnosis, declined throughout treatment, and stabilized between the consolidation and post-acute stages. Notably, the trajectories of each domain varied across parent subgroups. Three health care and informational needs trajectories, two daily care and communication needs trajectories, two psychological and spiritual needs trajectories, two medical service needs trajectories, three economic needs trajectories, and two emotional needs trajectories were identified. The class membership was significantly associated with parents' education level, employment status, the family's residency area, average monthly household income, type of medical payment, daily caregiving time, age of child, single child, parents' self-efficacy, and caregiving ability (P < 0.05). CONCLUSIONS: This study identified the dynamic evolution and distinct trajectories of parents' supportive care needs, along with their key predictors. The findings provide a solid foundation for developing stage- and population-specific interventions, offering practical guidance for optimizing family-centered care and informing supportive policy formulation in pediatric oncology settings.

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