Objective To explore the level of perceived vulnerability and child-rearing pressure among parents of children with congenital heart disease and factors associated with it, so as to provide scientific theoretical guidance for family rearing of these children and provide evidence for future intervention research.

Methods Case-control design was used to recruit parents of children with congenital heart disease who were followed up in a children’s hospital in Kunshan and Suzhou, Jiangsu Province from 2021 to 2022 as case group. They were divided into non-operation group and operation group based on their children’s heart operational history. At the same time, parents of children without congenital heart disease in the same age group who underwent physical examination in a community health service center in Kunshan, Jiangsu Province from 2021 to 2022 were recruited as control group. The Chinese version of parents’ perceived vulnerability scale and the simplified parenting stress questionnaire were used to evaluate the level of perceived vulnerability and parenting stress of the 3 groups, and factors associated wih it were analyzed by logistic regression model.

Results  There were 312 cases in the control group, 65 cases without operation and 167 cases with operation in the case group. About 3.85% in control group, 9.23% in case group without operation and 20.35% in case group with operation had higher level of vulnerability perception (score ≥ 10 points), and the difference was statistically significant (χ² = 34.32, P < 0.001). Study results showed that low age father, low annual household income, joint household (living with grandparents), and low birth weight were factors associated with high level of perceived vulnerability among parents. About 24.36%, 18.46% and 33.53% in the control group, the non-operation group and the operation group had parenting stress (parenting stress questionnaire score ≥ 85), respectively, and the difference was statistically significant (χ²= 6.09, P = 0.047). The score of total parenting stress, parenting distress and children with difficulties among parents in the opertation group were higher than those among parents in the control group and the non-operation group (all P < 0.05). After confounding factors such as age and preparer were controlled, the increase in the total score of parenting stress was associated with full-time father, older age of the child, family history of congenital heart disease, parents being surrogate caregiver, low education level of the surrogate caregiver, and father’s accompanying time < 2 h/day (all P < 0.05).

Conclusion Parenting pressure and emotions among parents of children with congenital heart disease are unstable. Medical staff should not only pay attention to the disease and physical and mental health of children with congenital heart disease, but also understand the perceived vulnerability and parenting pressure among parents in the process of taking care of them, and provide individualized coping style and intervention measures to train parents to face children’s treatment and rehabilitatio from positive perspective so as to achieve the purpose of common health of children and parents.