| Objective:1.To systematically review the effects of internet-based psycho-educational intervention on mental health and quality of life among cancer patients.2.To construct a micro-website based psycho-educational intervention program named ICARE for acute leukemia patients and their family caregivers.3.To evaluate the effects of ICARE intervention on fatigue,anxiety,depression,distress and quality of life in acute leukemia patients;to evaluate the effect of ICARE intervention on care burden,anxiety,depression,distress and quality of life of family caregivers of acute leukemia patients;to explore possible problems and feasible solutions in the clinical application of ICARE program.4.To explore the major concern of acute leukemia patients and their family caregivers in the process of coping with the disease and how patients and their family caregivers address the major concern on an ongoing basis.Methods:1.This sysmatical review searched randomised controlled trials and quasi-randomised controlled trials in Medline,Embase,CINAHL,PsycINFO,Web of Science,Cochrane Central Register of Controlled Trials,Proquest Digital Dissertations,Foreign Medical Retrieval System,China National Knowledge Infrastructure,China Science and Technology Journal Database,China Wanfang Database,and Taiwanese Airiti Library on the effects of Internet-based psycho-educational interventions on mental health and quality of life among cancer patients.The retrieval time was from the establishment of the database to March 2019.Under the guidance of literature retrieval experts and the discussion among research group members,a detailed and scientific retrieval strategy was formulated.Two researchers with evidence-based training independently conducted literature screening,data extraction,and literature quality evaluation in accordance with the PRISMA statement and the Cochrane Handbook standards,and analyzed the literature included finally.2.Based on the results of systematical review,research group’s discussion and discussion with software development engineers,the ICARE intervention program was preliminarily formed in this study.Six experts and ten participants were invited to demonstrate the modules and forms of ICARE intervention for acute leukemia patients and their family caregivers.Another 10 dyads of acute leukemia patients and their family caregivers were selected for the ICARE intervention program and the preliminary experiment was conducted to further revise and improve the ICARE intervention program.3.A randomized controlled trail was conducted in this study.A total of 72 dyads of acute leukemia patients and their family caregivers in hematology department of two largest tertiary hospitals in Fujian Province were selected,and the participants were randomly divided into experimental group(36 dyads)and control group(36 dyads).The experimental group received ICARE intervention for 12 weeks on the basis of routine nursing in hematology department,while the control group only received routine nursing measures in hematology department.The effects of ICARE programme on acute leukemia patients were evaluated by the Brief Fatigue Scale(BFI),the Hospital Anxiety and Depression Evaluation Scale(HADS),Distress Thermometer(DT)and FACT-LEU(Chinese version)at baseline,after 12 weeks intervention and at the 4 weeks follow-up.Meanwhile,HADS,DT,SF-36 and Zarit Caregiver Burden Scale were used to evaluate the effect of ICARE programme on family caregivers of acute leukemia patients.Linear mixed Model(LLM)was used to analyze the changes of outcome index scores of the participants,in which baseline measurements were used as covariables.Group,time and intergroup interaction were treated as fixed effects.participants were treated with random effects.4.Based on grounded theory methodology,this study explored the behavioral pattern of acute leukemia patients and their family caregivers across the trajectory of the illness.In this study,29 and 14 sets of data(primary and secondary,respectively)were analyzed.The analysis process strictly followed the procedures of grounded theory,such as opening coding,theoretical sampling,selective coding,theoretical coding,memo writing,sorting memos,constant comparison,etc,and the explanatory theoretical framework of this study was then established.Results:1.A total of 7 randomised controlled trials were included in this study,including 1220 participants and three intervention tools.All the literature was of medium quality.Systematic review results showed that Internet-based psycho-educational intervention had a significant effect on reducing depression[SMD=-0.58,95%CI(-1.12,-0.03),P=0.04]and fatigue[MD=-9.83,95%CI(-14.63,-5.03),P<0.01].However,the results of this study showed that internet-based psycho-educational intervention had no significant effect on cancer patients’ psychological distress[SMD=-1.03,95%CI(-2.63,0.57),P=0.21]or quality of life[MD=1.10,95%CI(-4.42,6.63),P=0.70].2.The construction of ICARE intervention programme in this study included a WeChat official account and a micro-website platform,and the functions of official account included message function,keyword reply,historical messages,etc.The micro-website based psycho-educational intervention programme’s Chinese name was "Aiyikang"(the same name as its official account)and its English name was"ICARE".The micro-website contains several modules,mainly including:(1)resource sharing;(2)education module;(3)mutual counseling;(4)personal diary and(5)other functions(including emotional quotes,latest topics,keyword retrieval and other important official wechat accounts).The results showed that:① the scores of fatigue,distress,anxiety and depression were decreased in acute leukemia patients pre-and post-intervention,and the scores of physical health and social/family happiness in quality of life were increased;② the scores of anxiety,depression,distress and care burden of family caregivers of acute leukemia patients were decreased pre-and post-intervention,and the scores of physical health and mental health were increased;③The result of semi-structured interview showed that all the acute leukemia patients and their family caregivers who participated in the preliminary experiment benefited from the ICARE intervention program,and recognized the program as a feasible and meaningful online psycho-educational intervention method with operability and simplicity,providing a new way for patients and their family caregivers to obtain supportive care.3.The results of randomized controlled trial showed that:①There were significant differences in fatigue,psychological distress,anxiety,depression,physical well-being,social/family well-being,emotional well-being,functional well-being and leukemia specific subscales between the two groups of acute leukemia patients(P<0.05).There were significant differences at time points in fatigue,anxiety,social/family well-being and leukemia specific subscales(P<0.05).There was significant interaction between group and time of fatigue,distress,anxiety,physical well-being,social/family well-being and emotional well-being,depression,leukemia specific scale and total quality of life score(P<0.05).② For family caregivers of acute leukemia patients,there was significant difference in physiological function between the two groups(P<0.05);There were significant differences at time points in care burden,distress,depression,physical health,mental health,physiological function,emotional function,social function,health transition,mental health(P<0.05).There was significant interaction between group and time of family caregivers’psychological distress,mental health,physical function and mental health(P<0.05).4.This study used grounded theory methodology originated by Glaser(Glaser&Strauss,1967;Glaser,1978)to discover the main concern(i.e.seeking survival)and the main behavioral model of how acute leukemia patients and their family caregivers address this issue(i.e.decision trade-off)through constant comparison and analysis 29 sets of primary materials(interviews)and 14 set of secondary materials(media materials,literature,etc).The influencing factors of behavioral pattern of acute leukemia patients and their family caregivers in coping with the disease were summarized,as well as four characteristics of the process of their coping with the disease were summarized:nonlinear,dynamic,instantaneous and periodic.Three decision-making strategies of "responding","accommodating" and "resisting"emerged.Conclusion:1.Internet-based psycho-educational interventions can significantly reduce fatigue and depression levels in cancer patients.Future studies with more rigorous design,large sample sizes and long-term follow-up are needed to investigate the impact of Internet-based psycho-educational interventions on quality of life and other mental health indicators in cancer patients.2.ICARE intervention is feasible in acute leukemia patients and their family caregivers,and may improve the fatigue level,reduce anxiety,depression and psychological distress level of patients,and improve the quality of life;improve the care burden of family caregivers of acute leukemia patients and reduce anxiety,depression and psychological distress,improve the quality of life.3.In this study,ICARE intervention can effectively improve the mental health and quality of life of acute leukemia patients and their family caregivers.In addition,futher development of online and offline mixed psycho-educational interventions can be considered in the future to meet the unmet needs of supportive care for acute leukemia patients and their family caregivers.4.Based on grounded theory,this study provides a behavioural pattern of acute leukemia patients and their family caregivers in the process of coping with disease,revealing the main concern "seeking survival",and providing a theoretical basis for disease management and nursing intervention of acute leukemia patients and their family caregivers in the future. |
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