Study On The Development Of Supportive Program For Neonatal Critical Congenital Heart Disease Family Caregiver Based On "Timing It Right" Theory

Background:Congenital heart disease is the most common birth defect.The incidence rate of neonatal critical congenital heart disease that may lead to death or require intervention within 1 month after birth is 2.96%,and surgery is the main treatment method.The diagnosis,treatment and rehabilitation of newborn critical congenital heart disease need to go through multiple stages and care places,in which family caregivers play an important role.Studies have found that family caregivers with congenital heart disease generally have heavy care burden,prominent psychological problems,improper role adaptation and other problems,and need many aspects of support.Neonatal critical congenital heart disease family caregivers have worse disease perception,role adaptation and caring ability than family caregivers of CHD infants,especially need timely support.However,at present,the support for family caregivers with congenital heart disease is mostly based on experience,without considering the specificity of needs at different stages of diagnosis and treatment,and no relevant reports have been reported for the special population of family caregivers for neonatal critical congenital heart disease.Objective:Describe the caregiving experience and needs of family caregivers at different stages of neonatal congenital heart disease.Develop support programs that meet the key needs of family caregivers at different times.Methods:From July 2022 to December 2022,37 cases of critical congenital heart disease in newborns and 12 cases of pediatric cardiac surgery medical staff in a third-class A hospital in Beijing were selected by objective sampling method.Semi-structured interviews were conducted to understand the nursing experience and needs of family caregivers in 5 periods from multiple perspectives.Based on the previous understanding of the needs of family caregivers of neonatal critical congenital heart disease,the guidelines,consensus and research on relevant intervention strategies were searched,and the support plan was preliminarily formulated.From February 2023 to March 2023,the Delphi method was adopted to conduct two rounds of expert correspondence consultation with 15 experts,and the final version of the support scheme was revised according to the results and opinions of the expert correspondence.Results:(1)The results of the phenomenological study:The experience and needs differ in different periods can be grouped into 14 first-level themes:the diagnostic period(desire for authoritative diagnosis,need for decision-making support);the perioperative period(assistance with referrals and admissions,perioperative information support,perioperative social support,negative psychological experiences,visiting close to the child);the discharge readiness period(caregiving role tension,postoperative care training,comprehensive discharge guidance,access to encouragement and help);adaptation period(continuity of care,home rehabilitation guidance,multifaceted social support);Adaptation period(regular follow-up reviews,long term rehabilitation guidance,reintegration).(2)The results of literature research:A literature search and screening was conducted based on family caregiver support needs and the characteristics of the population of family caregivers of newborns with critically ill precocious heart disease.A total of 17 articles were included and the draft of the intervention program was formed.(3)The results of Delphi expert consultation:A total of 15 experts were consulted,and two rounds of consultation were conducted.The positive coefficient of experts in both rounds was 100%,and the authority coefficient of experts was 0.89;the Kendall’s W of first-and second-level items in the first round were 0.21 and 0.19 respectively(P<0.05),and the Kendall’s W of first-and second-level items in the second round were 0.29 and 0.26 respectively(P<0.05).The final supportive program consists of 14 first-level items and 37 second-level items.Conclusion:The caregiving experience and needs of family caregivers with neonatal congenital heart disease are different at different stages.The support scheme based on timing theory based on Delphi method has good science and reliability.