慢性病青少年及照护者双视角下成长过渡期准备的纵向研究

目的 探究慢性病青少年及其照护者双视角下，成长过渡期准备水平的变化过程及对彼此生活质量的影响，明确家庭照护适应度在此过程中的调控作用。方法 采用前瞻性研究设计，便利选取2019年3月—9月在上海市2所儿童专科医院的肾病、风湿病和内分泌病房住院的201例慢性病青少年及其照护者作为调查对象。在住院期间、出院后1年和出院后2年，采用一般资料调查问卷、中文版家庭管理测量量表、中文版成长过渡期准备问卷、中文版儿童生存质量测定量表及中文版儿童生命质量家庭影响模块进行调查。采用纵向主-客体互依模型，分析成长过渡期准备水平对慢性病青少年及其照护者生活质量的影响。结果 重复测量方差分析结果显示，慢性病青少年及其照护者视角下的成长过渡期准备水平逐年增高（均P<0.001）。相关分析结果显示，出院后2年慢性病青少年及其照护者视角下的成长过渡期准备水平与彼此生活质量呈正相关（P<0.001）。主-客体互依模型分析结果显示，慢性病青少年视角下的成长过渡期准备水平对其生活质量有正向主体效应（P<0.05）;照护者视角下的成长过渡期准备水平对其自身和青少年的生活质量有正向主体、客体效应（P<0.05）;家庭照护适应度对青少年及其照护者视角下的成长过渡期准备水平均有正向影响（P<0.05）。结论 慢性病青少年及其照护者双视角下的成长过渡期准备水平能正向预测彼此的生活质量。医护人员应在不同阶段提供有针对性的家庭护理，提高慢性病青少年的自我管理能力，进而提升家庭整体生活质量。

The influence of family management adjustment and the trajectory of transition readiness in adolescents with chronic diseases and caregivers on their quality of life

Objective To explore the change of transition readiness from perspective of adolescents with chronic diseases and their caregivers，and to identify its long-term effect on their quality of life，and to clarify the regulating role of family management adjustment. Methods A prospective study was conducted among 201 pairs of adolescents with chronic diseases and their caregivers hospitalized in the wards of nephrology，rheumatology，and endocrinology of 2 children’s hospitals in Shanghai from March to September 2019. Data were collected at hospitalization（T1），1 year after discharge（T2） and 2 years after discharge（T3） using a demographic questionnaire，Chinese version of Family Management Measure，Chinese version of Self-Management and Transition to Adulthood with Rx=Treatment Questionnaire，Pediatric Quality of Life Inventory 4.0 and Pediatric Quality of Life Inventory Family Impact Model. The longitudinal actor-partner interdependence model was used to analyze the impact of transition readiness on quality of life. Results The results of ANOVA showed that transition readiness from perspective of adolescents and their caregivers increased year by year（P<0.001）. The results of correlation analysis showed that there was a significant positive correlation between transition readiness and quality of life at T3（P<0.001）. The analysis results of actor-partner interdependence model showed that adolescents’ perspective of transition readiness had a positive actor effect on their own quality of life（P<0.05）;caregivers’ perspective of transition readiness had positive actor and partner effects on their own quality of life and adolescents’ quality of life（P<0.05）;family management adjustment had significant positive impacts on transition readiness. Conclusion In the context of family management，transition readiness could positively predict quality of life of adolescents with chronic diseases and their caregivers. Medical staff should carry out targeted family interventions at different stages，improve self-management level of adolescents，and thus enhance quality of life of the whole family.