Application Research Of Care Intervention Based On "Timing It Right" In Patients With Hirscsprung’s Disease

Objective:To explore the care needs of caregivers of children with HD(Hirschsprung’s disease)based on TIR("Timing It Right" framework),and analyze the dynamic change,from four different roles of child caregivers,doctor,nurse,and community worker.Then making need-oriented family-centered care interventions based on the results of the qualitative research to improve the effectiveness of care ability of caregivers and the prognosis of children,to enhance the quality of their life.Methods:Qualitative and quantitative were used in turn,and the research was carried out in two stages.Part Ⅰ:Qualitative study that based on TIR and phenomenological approach were used,and 47 family caregivers whose children with HD were underwent megacolon radical surgery in a top three hospital of Suzhou,were divided into 4 groups by TIR participated in the semi-structured interview individually,and this interview also involved associated medical staff.Then investigating the care needs of caregivers of children with HD and making need-oriented family-centered care interventions based on the results.The programs will be lay down after seek expert advices.Part Ⅱ:Implementation of TIR family-centered care interventions.A randomized controlled and single-blind trial was performed.Convenient sampling method was used and the recruited children and their caregivers were spilted into 2 groups by randomized table.The control group received routine nursing and follow-up of general surgery.The observation group implemented TIR-guided phased family nursing interventions for 4 stages of HD(preparation,perioperation,defecationtraining,adaptation).Improve the prognosis of children by improving the caregivers’ care.The dynamic changes of the nursing experience,caregiver anxiety self-assessment SAS,care capacity FCTI and the incidence of postoperative were compared between the two groups in the time of observations,and the observations are:1 week and 1 month after discharge that diagnosis confirmed(preparation),24h after radical operation(perioperation),1 week and 1 month after discharge that radical operation had been performed(defecation training),3 months after discharge that radical operation had been performed(adaptation).Results:Part Ⅰ:Based on TIR framework,different care needs in 4 phases of HD ware extracted.They were(1)Preparation:disease knowledge and treatment plan,emotional and mental support,professional care skills,families sharing the caring;(2)Perioperation:operational information,families sharing the caring,relieve discomfort in children and complication prevention,reduce the financial burden;(3)Defecation training:supervise execution,information about toilet training,ehabilitation plan outside the hospita;(4)Adaptation:continuing nursing,community medical support and aid to return to society.Part Ⅱ:80 children with 40 in control group and 40 in intervention group in the end remained.All data at baseline were no statistical significant difference between the two groups.Intervention outcome shows as follows:there was no significant difference in SAS scores between the two groups of patients during the disease preparation period(P>0.05);1 month after discharge and 24 hours after radical surgery,1 week,1 month and 3 months after discharge.At the time of observation,the SAS scores of the caregivers in the observation group were significantly lower than those in the control group(P<0.05).There was no significant difference in the FCTI scores between the two groups(P>0.05).The segmental mean was significantly lower than the control group(P<0.001);the complication rate of discharge at 3 months showed that the incidence of complications in the observation group was significantly lower than that in the control group,and the difference was statistically significant(P<0.05).Conclusion:Specific care needs of HD at different phases were analyzed by the qualitative research,then making family-centered care interventions of TIR based on the results of the research and expert advices.Through the application of TIR home care model,the anxiety scores of caregivers of children with Hirschsprung’s disease are significantly reduced,the nursing ability is significantly improved and the incidence of postoperative complications is significantly reduced.It provides a practical basis for home care for children with congenital megacolon.