| Objective:(1) To modify the Childhood Adaptation Model to Chronic Illness:Diabetes Mellitus, and to propose an updated model (The Childhood Adaptation Model to Type 1 diabetes:an update);(2) To translate a scale of the key concept in the updated model "diabetes self-management" scale (A Self-report Measure of Self-management of Type 1 diabetes for Adolescents) into Chinese, and to evaluate the application of this Chinese version scale;(3) To describe the baseline and follow-up status of the depressive symptoms, diabetes self-management, metabolic control, and quality of life in youth with Type 1 diabetes, and to explore the risk factors of their depressive symptoms and diebetes self-management;(4) To provide practical data from Chinese youth to test The Childhood Adaptation Model to Type 1 diabetes:an update:to explore the longitudinal relationships between adaptation process variables (depressive symptoms and diabetes self-managment) and adaptaion outcome variables (metabolic control and quality of life), then to figure out the factors influencing these relationships.Methods:(1) The following methods were used to modify and update the Childhood adaptation Model to Chronic Illness:Diabetes Mellitus:an integrative review of the recent ten years’literature in terms of the model and our empirical clinical experience and research experience was aslo considered. The updates or modifications:teminology was modified to improve clarity; additional variables were added to the model to increase specificity of factors influencing adaptation; more recursive pathways in the model were defined and additional pathways were proposed.(2) Self-report measure of self-management of Type 1 diabetes for adolescents was translated into Chinese with the guide of the improved Brislin’s translation model for cross-cultural research, including forward translation, back translation, translation equivalence evaluation, and a variety of translation strategies. A multi-sites cross-sectional design was used to test the psychometric properties of this self-report measure in 136 youth with Type 1 diabetes aged 8-19 years in Hunan. The psychometric index included translation validity index, internal consistency reliability, test-retest reliability, convergent validity, discriminant validity, criterion-related validity. Hemoglobin A1c value and the scores of Quality of life Scale for children and adolescents were used to calculate convergent validity, while the scores of Diabetes Adherence scale was used to calcualte the criterion-related validity. The data was performed in the Statistical Package for Social Science (SPSS) 13.0 and descriptive analysis, Pearson relation analysis, reliability analysis, and One-way ANOVA were involved.(3) A multi-sites longitudinal investigation was conducted from July 2009 to October 2010. At the baseline.136 youth with Type 1 diabetes from all the 14 areas of Hunan aged 8-19 years were investigated, while six to twelve months later,86 youth were followed-up for the same data as the baseline. The collected data included socio-demographic information, depressive symptoms, diabetes self-management, satisfaction with quality of life, and the metabolic control related indicators (Hemoglobin Alc and Fasting blood glucose).The involved measures included youth’s basic information list, Pubertal Development Scale, Weight monitor; Depression Self-rating Scale for Children, Self-report Measure of Self-Management of Type 1 Diabetes for Adolescents, Quality of life Scale for children and adolescents; the highly effective liquid chromatography machine, NycoCard Hemoglobin Alc monitor, and Johnson OneTouch UltraEasy blood glucose meter. Descriptive analysis, one-way ANOVA, non-parameter H test, one-sample t test, chi-square test, Logistic regression, and multiple linear stepwise regressions were used in baseline data. Mixed effect model was performed to describe the longitudinal data and explore the correlations among variables and the factors influencing those correlations. All the data was analyzed by the Statistical Package for Social Science (SPSS) 13.0.Results:(1) The Childhood Adaptation Model to Type 1 diabetes:an update was proposed. This model described the complex and flexible adaptation process of the youth with Type 1 diabetes from individual and family characteristics, psychosocial responses, individual and family responses, and adaptation.(2) The translation validity index of the five subscales of Self-report measure of self-management of Type 1 diabetes for adolescents achieved the goal. The Cronbach’s a were 0.80 (Collaboration With Parents),0.67 (Diabetes Care Activities),0.82 (Diabetes Problem Solving),0.81 (Diabetes Communication), and 0.84 (Goals). The stability of the scale ranged from 0.71 to 0.83 at two weeks (test-retest). Regarding with the convergent validity, four of the five subscales (except for Diabetes Problem Solving) were related with the quality of life score and Hemoglobin Alc (r=-0.19-0.36, p<0.05). The five subscales could tell the youth’s sex, age group, diabetes duration gourp and different insulin treatment regime (F=4.28～18.54, p<0.05), which meant its discriminant validity was good. For criterion-related validity, all the five subscales were positively correlated with the scores of the Diabetes Adherence Scale (r=0.27～0.52,p<0.01). The youth in this study accepted the scale well and could finish it in eight to twelve minutes.(3) The disease adaptation process of the youth with Type 1 diabetes aged eight to nineteen years:the incidence of positive depressive symptoms was 17.6%; drop-out from school, non-tranditional family, and bad parent-child relationship were the first three risk factors of positive depressive symptoms (p<0.05). The score of depressive symptoms in this sample increased over time (III Type test showed F= 6.68, p<0.05).The score of Diabetes Care Activities decreased over time (III Type test showed F=8.506, p=0.004). In general, the youth who did not take intensive insulin regime as American Diabetes Association (ADA) recommended, who was not in a tranditional family, or the boys did worse in diabetes care activities (p<0.05).(4) The disease adaptation outcome of the youth with Type 1 diabetes aged eight to nineteen years:At baseline, less than 50% of the youth took intensive insulin regime, more than 67% of them was under the goal of metabolic control as ADA recommended, and 49% of the youth had bad metabolic control. The Hemoglobin A1c value of the youth did not change during six to twelve months (III Type test showed F=0.067, p>0.05), however, the proportion of bad metabolic control increased to 51.9%. The patients in school age (8-12 years old) had better metabolic control than those who were in adolescence (13～19 years old) (x2=10.071,p<0.01).The satisfaction with quality of life in the youth with Type 1 diabetes was less than the healthy peer (t=-4.402,p<0.001). The score of the satisfaction with quality of life was the same over time (III Type test showed F=-0.696, p>0.05).(5) The relationship between disease adaptation process and disease adaptation outcome in the youth with Type 1 diabetes aged eight to nineteen years:the change in the incidence of positive depressive symptoms did not affect the change in the score of Diabetes Care Activities and Hemoglobin Alc over time (t=1.889,-0.16, p>0.05); however, the change in positive incidence of depressive symptoms affected the change of satisfaction with quality of life over time (t=2.82, p=0.005), the peer relationship, parent-child relationship, in school or not, and only-child or not entered the fitted mixed model (p<0.05). The change in diabetes care activities affected the change in Hemoglobin Alc and satisfaction with quality of life over time (t=2.30、-2.37, p<0.05). Diebetes duration group, sample resource, taking ADA’s insulin intensive regime (p<0.05); age group, peer relationship, parent-child relationship, only-child or not (p<0.05) entered the above two fitted mixed models seperately.Conclusion:(1) Taken the updates in ADA’s insulin treatment regime and the recent studies into consideration, the childhood adaptation to Type 1 diabetes model was proposed as a more comprehensive and easily understandable model. This model could guide the researchers and clinical staff to pay attention on the details in the youth’s disease adapation process based on a view of the holistic picture.(2) The translation process of Self-report measure of self-management of Type 1 diabetes for adolescents was strict and reasonable. The Chinese version scale was accepted in Chinese youth with Type 1 diabetes (aged 8 to 19 years) and the application was satisfied. The translation equivalence index, reliability, and validity of the scale showed that the Chinese version kept consistency with the original scale. The Chinese version scale was a reliable and valid tool, with the psychometric properties fitting the requirement of a psychological measurement.(3) The youth with Type 1 diabetes (aged 8 to 19 years) did not adapt to their disease well. Their adaptation outcome (metabolic control and quality of life) was bad. Worse still, their adaptation process (depressive symptoms and diabetes self-management) deteriorated over time. The result that adaptation process variables changed before the outcome variables over time implied that proper survey and intervention on the youth’s disease adaptation process could help improve their adapation outcome.(4) The basic point of the Childhood Adaptation to Type 1 Daiabetes Model (the relationship between adaptation process and outcome) was consistent with the practical data of this dissertation. It meant that the new model with good application in China could guide more nursing research and clinical practice. |
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