Self-Management Intervention For Adolescents With Hemophilia A In Transition To Adulthood Construction Of A Program

ObjectivesThe purpose of this study is to construct a set of self-management programs applicable to adolescent haemophilia A patients during the transition period based on their real experiences and needs of disease self-management during the transition period,on the basis of the interactive model of health behaviors,drawing on the practical experiences on adolescent self-management during the transition period at home and abroad,and combining the characteristics of adolescent hemophilia A disease.Methods1.A semi-structured interviews were conducted with adolescent hemophilia A patients,and the interview data were analyzed using the Colaizzi 7-step method to understand the real experiences and practical needs of disease self-management during the transition period.2.Combining the results of qualitative research and literature studies,we constructed a draft of transition self-management for adolescents with hemophilia A based on the Health Behavior Interaction Model.By selecting experts in the field of hemophilia,designing an expert correspondence questionnaire,inviting experts to conduct 2 rounds of Delphi expert correspondence,collecting,collating and discussing expert revisions,and finally forming an intervention plan for the transition self-management of adolescent hemophiliacs based on the health behavior interaction model.Results1.The results of the qualitative study showed that a total of 12 adolescent hemophilia A patients participated in the interviews,and the contents of the interviews were summarized into 3 major themes and 9 sub-themes including behaviors,perceptions and needs,in which the lack of awareness of self-management ability,insufficient knowledge and skills of the disease and objective constraints of adolescent hemophilia A patients were the main factors preventing adolescent hemophilia A patients from implementing self-management during the transition to adulthood.2.The results of the protocol construction showed that 21 papers were included in the literature review,and the quality of the literature was evaluated to be of medium to high quality.Combined with the results of the qualitative study,the content,form,time and personnel of the intervention program for self-management of adolescents with hemophilia A in transition to adulthood were determined,and the first draft of the intervention program was constructed.A total of 15 experts conducted two rounds of Delphi method expert consultation,and 10 experts gave constructive opinions.The recovery rate of valid consultation questionnaires was 100%and 93.75%,and the authority coefficients of experts in the two rounds were 0.929 and 0.924,and the Kendall’S W of primary and secondary indicators after the two rounds of consultation were 0.264 and 0.188,respectively,which finally formed a self-management program containing 5 primary indicators and 33 secondary indicators.The final result is a self-management program containing 5 primary indicators and 36 secondary indicators.ConclusionsBased on qualitative research and literature review,this study initially constructed a self-management program for adolescent hemophilia A patients during the transition period based on the theory of health behavior interaction model,and revised the program through expert correspondence.The construction process of the program is scientific and standardized,which can provide reference for the self-management practice of adolescent hemophilia A patients during the transition period.