The Association Among Family Management,Transition Readiness And Quality Of Life Of Children With Chronic Diseases

Objective:To investigate the level of family management,transition readiness and quality of life in children with chronic diseases,and explore the relationships among them.To identify different family management patterns of children with chronic diseases and examine their impacts on the transition readiness and quality of life of children.After doing this,we can provide evidence for nurses to develop the most effective interventions to facilitate self-management and transition skills in the context of specific family management for children with chronic diseases.Methods:A total of 471 chronically ill children aged 8 to 18 years old and their caregivers were recruited from two children hospitals in Shanghai between June 2016and December 2017.The demographic questionnaire,Family Management Measure（Fa MM）,Self-Management and Transition to Adulthood with Rx=Treatment（STARx）Questionnaire,and Pediatric Quality of Life Inventory 4.0 Generic Core Scale(Peds QL^TM4.0)were administered.The demographic information,family management,transition readiness and quality of life were analyzed through statistical description and inference.Structural equation modelling（SEM）using LISREL 8.8was conducted to explore the relationships among demographic variables,family management,transition readiness and quality of life of children.Cluster analysis was performed using SPSS 20.0 based on the scores of six Fa MM scales to identify different family management patterns,and to examine the differences in demographic information,transition readiness and quality of life across these clusters.Results:（1）A total of 471 caregiver-child pairs,with the caregivers in question consisting of 88 fathers,302 mothers,and 81 grandparents were recruited in our study.（2）The mean scores of six Fa MM scales were as follows:child’s daily life was18.01±4.40,condition-management ability was 41.59±6.54,parental mutuality was33.60±5.32,family-life difficulty was 39.73±10.17,view of condition impact was29.48±6.28,condition management effort was 14.23±3.71;the mean score of transition readiness was 58.38±12.34;and the mean score of quality of life was73.99±16.73.（3）The SEM showed a good fit to the current data（χ²=492.67,df=185,p<0.001,NFI=0.91,CFI=0.94,RMSEA=0.059,SRMR=0.068）.（4）The analysis indicated that the easy aspects of family management positively influenced transition readiness（β=0.19,p<0.001）,and quality of life（β=0.39,p<0.001）;while the challenging aspects of family management were found to indirectly influence transition readiness and quality of life through negatively affecting easy aspects of family management（β=-0.89,p<0.001）.（5）Transition readiness positively influenced quality of life（β=0.19,p<0.001）.（6）Diabetes（β=0.13,p=0.005）and urban families（β=0.10,p=0.034）predicted high levels of easy family management.;meanwhile,male children（β=0.09,p=0.028）,diabetes（β=0.11,p=0.018）,longer disease duration（β=0.11,p=0.015）,more types of medicines used（β=0.24,p<0.001）,multiple-child family（β=0.13,p=0.005）,and lower family income（β=-0.40,p<0.001）predicted high levels of challenging family management.（7）Specifically,diabetes（β=0.23,p<0.001）,and urban families（β=0.16,p<0.001）predicted better transition readiness,while more types of medicines used directly predicted poorer quality of life（β=-0.16,p=0.001）.（8）This study according to six Fa MM scales identified 4 family management patterns:effective managing,uncertain managing,conflicting managing and difficult managing;and there were significant differences in the demographic information,transition readiness and quality of life across the four clusters.（p<0.05）.Conclusion:（1）Family management,transition readiness and quality of life are particularly important for children with chronic diseases and are not optimistic in China.（2）Easy aspects of family management have a direct positive impact on transition readiness and quality of life of children with chronic diseases.（3）Challenging aspects of family management were identified to indirectly affect transition readiness and quality of life through negatively influencing easy aspects of family management.（4）Transition readiness positively influence quality of life.（5）The demographic factors（gender,one-child family,diagnosis,disease duration,types of medicines used,geographical location and family income）significantly influence family management of children with chronic diseases.（6）There were four different family management patterns for children with chronic diseases:effective managing,uncertain managing,conflicting managing and difficult managing;and significant differences were found in demographic characteristics,transition readiness and quality of life of children.（7）Nurses and researchers should prepare children and caregivers to adapt as a unit and strengthen the positive influences family management has on children’s transition readiness and quality of life,and develop tailored family-involved interventions according to the characteristics of different family management patterns in order to facilitate the transition readiness and quality of life of children.