| Research objectives:Pediatric leukemia is the most common malignant tumor in childhood,and there are about 15,000 new cases of childhood leukemia in China every year.Complete remission can be achieved in more than 95% of pediatric acute lymphoblastic leukemia.With the improvement of remission rate and survival rate,parents will face different stressors at different stages of the course of the disease,resulting in the corresponding psychological and physical symptoms,affecting their life and work.At the same time,this adverse emotional experience in turn will affect the treatment of children and the development of mood and behavior.Integrating clinical,psychological and social resources to promote the physical and mental recovery of children and their parents as well as the positive change of their behavior patterns is one of the urgent problems to be solved in social psychological oncology.In this study,a mixed qualitative and quantitative study design was adopted to evaluate the relationship between the physical and mental functions and behavioral patterns of parents of children with leukemia and social psychological factors,to explore the real experience and care needs of the parents of children with leukemia,and to identify their post-traumatic growth,its advantages and resources,as well as its promotion and retardation factors.Guided by the theory of strengths-based case management(SBCM),combined with literature research and empirical results,based on expert advice,the intervention plan of SBCM for families of children with leukemia was gradually constructed and revised.To reveal the improvement effect of SBCM on parents' negative psychology,post-traumatic growth and children's compliance of children with leukemia,and to provide theoretical and empirical support for the innovation of family case management model of children with leukemia in China.Methods:Part ?: The father or mother of the hospitalized children with acute leukemia were enrolled in a cross-sectional survey during the survey period.A uniformly designed baseline questionnaire and a self-completed questionnaire were used to collect the general situation and psychosocial indicators of the parents.237 questionnaires were sent out and 177 were effectively received with effective recovery rate of74.7%.Include:Depression Scale(CES-D),Self-Rating Anxiety Scale(SAS),Post-Traumatic Stress Disorder Checklist-Private Version(PCL-C),Post-Traumatic Growth Inventory(PTGI),Multidimensional Understanding Social Support Scale(MSPSS),(Optimistic)Lifestyle Oriented Test Revised(LOT-R),Self-Resilience Scale(RS-14),General Self-efficacy Sensitivity Scale(GSEs),as well as demographic profile and clinical characteristics(time to date).T-test,one-way analysis of variance,least significant difference method,Pearson correlation analysis and multiple linear stratified regression were used to analyze the relationships between groups and variables step by step.Part ?: The phenomenological method is used as the theoretical guidance to guide the parents of children with acute leukemia to present their own "meaningful experience" process and structure.The interview outline was constructed,and the parents of 8 children who met the inclusion criteria were pre-interviewed,and the interview outline was modified and improved.Face-to-face in-depth interviews were conducted with 12 interviewees by means of semi-structured interviews.The number of interviewees ended with no new topics.Collect texts of parents' subjective descriptions,experiences and experiences.Claizzil's seven-step method was used to guide the analysis of interview data.Part ?: According to the results of the quantitative and qualitative research in the first two parts,through literature review,combined with practical experience,brainstorming method and focus group method were used to form the first draft of the content index system of family case management service for children with leukemia.The Delphi method was used to conduct two rounds of expert evaluation on the index system,and the expert evaluation opinions were combined to revise the index system to form the family case management service content of pediatric leukemia.Part ?: The parents of 70 eligible children with acute leukemia were selected as the research objects,and the intervention group and the control group were established by non-synchronous control method.By using the core theoretical methods of SBCM and in accordance with the content index system of pediatric leukemia case management services established in Part ?,the case manager will provide some or all of these services according to the actual needs of individual families and the guidance of clinical pathways.Questionnaires were sent to the parents at 2 and 3 months after the intervention to measure the changes in their psychosocial function and post-traumatic growth.The t test,chi-square test and analysis of variance of repeated measurements were used for data statistical processing.Results:Part ?: 1.The incidence of depressive symptoms,anxiety symptoms and PTSD symptoms in the parents of children with acute leukemia were 76.8%,52.5% and 29.4%(PCL-C?44)or 19.8%(PCL-C?50),respectively,and 19.8%-27.1% of the subjects may suffer from these three psychological disorders at the same time.2.In the time that demography and disease factors,different education level in children with parents depressive symptoms and anxiety symptoms and PTSD symptoms scale score difference was statistically significant,which has a junior high school education level of parents' mental disorder symptom scores were significantly higher than that of high school and college and above group research object;3.The scores of social support,its three dimensions and positive psychological resource variables were significantly negatively correlated with the scores of depressive symptoms,anxiety symptoms and PTSD symptoms,and significantly positively correlated with the scores of post-traumatic growth.4.(1)Social support(support from significant others),optimism and general self-efficacy had significant negative effects on depressive symptoms,and the combined explanatory power of psychosocial factors was 26.6%/26.7%(Model 1/ Model 2);(2)Social support(family support)and optimism had a significant negative effect on anxiety symptoms,and the combined explanatory power of social psychological factors was 20.1%/20.6%(Model 1/ Model 2);(3)Perceived social support(friend support),optimism and general self-efficacy had significant negative effects on PTSD related symptoms,and the explanatory power of psychosocial factors was 14.5%/14.4%(Model1/ Model 2);(4)Perceiving social support(significant other support)and resilience had significant positive effects on post-traumatic growth,and the explanatory power of psychosocial factors was 16.1%/17.1%(Model 1/ Model 2).Part ?: The post-traumatic growth experience of the parents of children with acute leukemia mainly includes traumatic reaction(negative emotional reaction,disease uncertainty,parent-child conflict)and growth experience(personal strength enhancement,interpersonal relationship intimacy,new understanding of the meaning of life and change of attitude towards the children).The factors that promote the post-traumatic growth of children's parents include internal factors(positive internal qualities,reasonable coping strategies)and external factors(society,government support system).Part ?: After the first round of expert letter consultation,the average of 55 indicators ranged from 3.48 to 4.84,the full mark ratio ranged from 20% to 88%,and the coefficient of variation ranged from 8.5% to 30%.Third level catalogs by the original 55 adjusted to 50 items,the number of first and second level catalogs unchanged.After the second round of expert letter consultation,the average of 50 indexes ranged from 3.56 to4.76,the full mark ratio ranged from 28% to 84%,the coefficient of variation ranged from 11.47% to 34.48%,and the number of first,second and third level catalogs remained unchanged.For 25 experts,the effective recovery rate of the two rounds of consultation tables was 100%,and the authority degree CR =0.864 was good.The expert opinions were coordinated,reliable and consistent to a certain level.Part ?: On admission,there was no significant difference in negative psychological symptoms and post-traumatic growth between the experimental group and the control group,while the treatment compliance in the experimental group was significantly lower than that in the control group.After 2 months of intervention,there was still no statistical difference in negative psychological symptoms and post-traumatic growth between the experimental group and the control group,but the treatment compliance of children in the experimental group was significantly higher than that in the control group.After 3 months of intervention,the anxiety symptoms of the experimental group were significantly lower than the control group,while the post-traumatic growth of the experimental group was significantly higher than the control group,and the treatment compliance of children in the experimental group was still significantly higher than the control group.Conclusions:Parents of children with acute leukemia will show different degrees of depression symptoms,anxiety symptoms and PTSD symptoms,and there are comorbidity phenomenon;Among the factors such as demography and the time since the onset of the disease,only different education level had statistical significance in the score difference of the psychological disorder symptom scale.It was found that social support,optimism and general self-efficacy were negatively correlated with the symptoms of psychological disorders,while mental resilience positively affected post-traumatic growth.Perceived social support had a significant negative effect on the symptoms of the three psychological disorders,and a significant positive effect on post-traumatic growth.Optimism has a significant negative effect on the symptoms of the three psychological disorders.General self-efficacy has a significant negative effect on depressive symptoms and PTSD related symptoms.Resilience only had a significant positive effect on post-traumatic growth.The comorbidities of children's parents need to attract the attention and management of clinical medical staff,and it is necessary to intervene the symptoms of psychological disorders,dig positive psychological resources,and promote post-traumatic growth.Negative experiences and post-traumatic growth coexist in the caregiving process of parents of children with acute leukemia.While paying attention to the psychological problems of the parents of children,medical staff should also identify the positive psychological experience of the parents in time,fully tap their own potential,guide the parents to take a positive and effective coping style,help them out of the trauma and grow up.At the same time,society and the government also need to focus more on the families of children with acute leukemia and give them emotional and financial support.The index system of family case management services for children with leukemia mainly includes four first-level indicators,including case evaluation and planning,psychological support,medical care support and social support,16 second-level indicators and 50 third-level indicators.The service scheme of strengths-based case management not only plays a significant role in relieving the anxiety symptoms of the parents of children with acute leukemia,but also improves the post-traumatic growth of the parents and the compliance of the treatment of the children. |
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