Effect of patient education on parental stress and illness perception in parents of children with congenital heart disease

**Introduction:**Congenital heart disease (CHD) is defined as abnormal cardiocirculatory structure or function present at birth.There are studies conducted stating that paediatric surgery, especially heart surgery, is a time of significant stress for parents 2,3 and having a child with congenital heart disease can be very stressful for parents as they often have to face overwhelming emotions and also physical and financial challenges. Between 30% and 80% of parents whose children are diagnosed with CHD have reported facing considerable distress.The anxiety felt by a parent can be transferred to the child and can have an effect on the speed of recovery following paediatric heart surgery. Children rely on the capacity of their parents or caregivers to be educated and adequately care for them since they lack the cognitive and physical abilities to independently care for themselves. Children born with congenital heart disease (CHD) require education specific to their anatomical defect to ensure parents understand the importance of interventions performed as well as medication and equipment management. When parents of children with CHD have a comprehensive understanding of their child’s heart condition, treatment options, and preventive measures against complications, it significantly impacts the child’s health related behaviour. This increased knowledge enhances adherence to treatment while diminishing risky behaviour. Additionally, being well-informed about their child’s care significantly impacts parental stress levels and boosts their confidence in providing adequate care for their child. Offering comprehensive patient education to adequately brief parents about pre-operative, surgical, and post-operative cardiac procedures and plans has been shown to reduce parental anxiety and stress. Studies have proven that providing education and resources related to CHD allows parents to gain an understanding of their child’s cardiac complexities which attributes to reduction in parental stress. Parental education for children with CHD is crucial for enhancing patient prognosis, ensuring better compliance, encouraging post operative follow-up, and facilitating rehabilitation. Patient education offers a valuable platform for parents of children with congenital heart disease to clear their doubts, address their concerns and provide patient centered care. Data specific to education in the CHD population is limited. Nevertheless, research indicates that, education programs improve parental and patient knowledge of their disease and management. The goal of creating this parental education program is twofold: to offer educational resources for parents of children diagnosed with CHD and to assess how it affects their perception of the condition and the levels of stress they experience.

Aim: To evaluate the effect of patient education on parental stress and illness perception in parents of children with Congenital Heart Disease and help parents to cope up with the challenges of ongoing treatment. Objectives: • To evaluate illness perception and score of Parental Stress Scale in parents of children with Congenital Heart Disease. • To assess awareness in parents of children with congenital heart disease. • To compare the effect of patient education on illness perception and score of parental stress scale in parents of children with Congenital Heart Disease.

Methodology: 1. Participants will be included according to inclusion and exclusion criteria. 2. Participants will be explained about the study.

3.Collection of demographic data will be done.

4. Assessment of illness perception of parents of children with Congenital Heart Disease using Brief Illness Perception Questionnaire.

5. Assessment of level of stress experienced by parents of children with Congenital Heart Disease by Parental Stress Scale.

6. Educate the parents of children with CHD.

7. Evaluate Illness perception and the score of Parental Stress Scale post education in parents of children with Congenital Heart Disease after the intervention.