Post-operative discharge education for parent caregivers of children with congenital heart disease: a needs assessment

Abstract

Objective: Children with congenital heart disease (CHD) have complex unique post-operative care needs. Limited data assess parents’ hospital discharge preparedness and education quality following cardiac surgery. The goals were to identify knowledge gaps in discharge preparedness after congenital heart surgery and to assess the acceptability of an educational mobile application to improve discharge preparedness. Methods: Telephonic interviews with parents of children with two-ventricle physiology who underwent cardiac surgery 5–7 days post-discharge and in-person interviews with clinicians were conducted. We collected parent and clinician demographics, parent health literacy information and patient clinical data. We analysed interview transcripts using summative content analysis. Results: We interviewed 26 parents and 6 clinicians. Twenty-two of the 26 (85%) parents felt ready for discharge; 4 of the 6 (67%) clinicians did not feel most parents were ready for discharge. Fifteen of the 26 parents (58%) reported receiving the majority of discharge teaching on the day of discharge. Eight parents did not feel like all of their questions were answered. Most parents (14/26, 54%) preferred visual educational learning aids and could accurately describe important aspects of care. Most parents (23/26, 88%) and all 6 clinicians felt a mobile application for post-operative care education would be helpful. Conclusions: Most parents received education on the day of discharge and could describe the information they received prior to discharge, although there were some preparedness gaps identified after discharge. Clinicians and parents varied in their perceptions of the readiness for discharge. Most responses suggest that a mobile application for discharge education may be helpful for transition to home.

Follow-up Plan as a Necessity for Nursing Care: A Decrease of Stress in Mothers with their Children in Pediatric Surgical Units

“…The researchers emphasized that follow-up phone calls and generalized care plans are needed; however, the parents experience loneliness and lack of support at the discharge. 21 - 23 The children might face serious problems if they are not followed up after surgery, especially delay in the diagnosis of surgery side effects. Since the mothers’ need to support and care is an important issue, implementation of a follow-up care plan was noticed.…”

Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association

“…Patients with congenital heart disease often require medications, feeding tubes, nutritional support, and follow-up services and appointments after hospital discharge. 149 Discharge planning can begin early in the hospitalization and includes family education and ongoing assessment of postdischarge needs such as equipment, resources, and referrals to early intervention (EI) and neurodevelopmental services. In-hospital developmental screening can also be used to identify neurodevelopmental vulnerabilities, which can inform discharge planning and family education.…”

A mobile application for postoperative education of caregivers of children with congenital hypospadias: Requirement analysis

“…Furthermore, other studies have highlighted the benefits of mobile applications in providing education and support for mothers of children with congenital heart disease during their home care. 9 A qualitative study conducted by Hjorth-Johansen et al 15 examined an application designed for infants with congenital heart disease. This study demonstrated the importance of information addressing treatment-related issues, such as post-heart surgery recommendations and shunts.…”

“…14 The results of a study conducted in 2020 to evaluate the quality of postoperative education in patients with congenital heart defects and determine the acceptance rate of a mobile-based care application for their preparation before discharge showed that parents face challenges in preparing to care for their children; moreover, most physicians and parents agreed on the usefulness of a mobile application for postoperative care education. 9 Another study published in 2023 to assess the feasibility and acceptance of a mobile-based congenital heart care application in supporting parents to understand and manage their children's healthcare needs showed that parents and healthcare professionals find this application an effective tool for the healthcare system and facilitating follow-up of patient treatment applications. 15 The availability of mobile-based care applications holds immense potential for delivering appropriate care and providing relevant educational content related to treatment, health promotion, and the reduction of postoperative complications.…”