Cleft lip with or without palate (CL/P) is a common congenital developmental malformation affecting the oral and maxillofacial region [1], with a global prevalence of about 1.62%-1.82% [2], and the highest prevalence in Asian countries [3]. There are 35,000 babies born with CL/P in China each year [4]. Palate repair surgery is usually done when babies are 10 to 24 months old, while lip surgery is generally performed at the age of 6 months [3]. The management of CL/P is long-term, beginning from birth and continuing into the late teenage years. Children born with CL/P not only face a visible facial disfigurement but also have other challenges related to the cleft, such as feeding difficulties, speech impediments, hearing issues, and psychological problems, which may compromise their ability to communicate effectively [5].

Children with CL/P are vulnerable to external discrimination because of the malformation. A child with CL/P is subjected to bullying, rejection, and social isolation, sometimes even from their own family [6]. The discrimination can have devastating health and well-being impacts, not only on children affected but also on people associated with the discriminated person. Having a baby with CL/P has variable psychological impacts on the parents [7]. Parents are often concerned about whether their children will be accepted as they grow up, and parents’ psychological state directly affects their children’s perception of the condition [6,8,9]. Some studies [10,11] have indicated that the perception of stigma experienced by the mother and children is consistent. Numerous studies [2,12,13] have shown that children with CL/P experience significant stigma, and limited engagement in social activities suggests that the parents of these children may experience high levels of stigma. Furthermore, Parents are troubled by their children’s conditions from birth to adulthood, while children often experience discrimination after their cognitive development has matured. Therefore, exploring ways to prevent these patients and their parents from feeling stigmatized is urgently necessary.

Currently, research on the perception of stigma among parents of children with CL/P is predominantly qualitative, emphasizing the exploration of factors contributing to parental stigma. However, there is limited reporting on assessments regarding the level and variation in the perception of stigma. In particular, there is no research on the perception of stigma in children with CL/P in China. Previous studies [11,14] have shown that superstition is the main reason for parents’ perception of stigma, and only 40% of parents believe that genetic problems cause CL/P. One study [11] found that 72% of mothers felt ashamed of having children with CL/P, and some even abandoned their babies. Therefore, it is crucial to examine the perception of stigma among parents of children with CL/P, pinpoint those experiencing heightened stigma levels, implement tailored nursing interventions based on sensitive factors, and mitigate the likelihood of public incidents. This study aims to investigate experiences of stigma in parents of children with CL/P and analyze the contributing factors.

In this study, a total of 110 questionnaires were distributed. Of the collected questionnaires, 104 were complete, resulting in a 94.6% response rate.

This study found that parents of children with CL/P experienced a high level of perception of stigma and obvious social anxiety and depression. In addition, parents’ education level, children’s status of surgery, social anxiety, and depression affect parents’ levels of perceived stigma. This study complements the gap in the study of stigma perception in families of children with CL/P in China. Parents in our study exhibited a higher level of stigma perception. This could be attributed to the fact that most children underwent corrective surgery during infancy, making parents more attuned to discrimination, as they believe that visual impairments affect their children’s social lives. Thus, prevailing data suggest that Chinese clinical nurses should pay attention to the quality of life of parents of children with CL/P.

Our study showed that children’s sex and the type of CL/P could not affect parents’ discrimination perception. This is consistent with the findings of previous studies that reported no significant difference in the level of discrimination perception between patients of different sexes and CL/P types [10]. The results of our study showed no significant difference in the level of stigma perception between fathers and mothers. Fathers also had a high level of stigma perception. However, previous studies [14,18] suggested that mothers of children with CL/P experienced severe stigma or discrimination while ignoring the possibility that fathers also experienced high levels of discrimination. Two other studies [19,20] pointed out that the main sources of stress among fathers were the treatment process, feeding, and social stigma. Therefore, in the care process of children with CL/P, we should not only focus on the mother’s psychological state but also consider the psychological state of the father. The importance of family nursing should also be emphasized.

Parents of children with CL/P experience obvious depression and anxiety. It is consistent with the findings of previous studies reporting that parents of newborns with CL/P had significantly higher levels of anxiety compared to control parents [20]. The study findings are consistent with the current literature, as depression or depressed mood in parents of children with CL/P is a common phenomenon [21,22]. Kumar [23] reported the highest incidence of depressive episodes, with 42% of parents of children with CL/P aged >10 years showing a strongly or very strongly elevated depressive disorders screening index. Sommer [24] has pointed out that mothers of children with CL/P believe their children have a negative impact on them. Their negative views and emotions are mainly derived from the long treatment times, the difficulty of treatment, the uncertainty of the infant’s future condition, and the fear of rejection. Family members of infants with CL/P experience stigma, anxiety, and worry, which may lead to individual negative emotions and coping styles, produce adverse intergroup relations, reduce subjective well-being and life satisfaction, and ultimately affect the quality of family life. Relieving the stigma perceived by parents of children with CL/P is the first step to relieving negative emotions like anxiety and depression in these parents. Therefore, we should pay attention to the physical rehabilitation of children as well as the mental health of children and their parents.

In this study, parents with junior high school education showed a high level of stigma perception, and the perception of stigma was lower among parents with a college education or higher. So far, no study has investigated the relationship between the education level of parents who have children with CL/P and their stigma perception. A previous study [6] showed that caregivers of children with attention deficit hyperactivity disorder, who have higher education levels, experience higher levels of stigma. However, the results of this study were inconsistent with a previous study, possibly because parents with a junior high school education have less knowledge of the condition and are more likely to focus on the appearance of their children. The difference could potentially be attributed to the fact that parents with higher education levels are more likely to access relevant information about the condition and feel more confident about the later recovery process. Hence, health care professionals should focus on parents with a high school education or lower, monitor variations in their perceived stigma levels, comprehend their psychological well-being across different stages of their children’s lives, and offer tailored psychological support.

Cleft surgery provides hope to those children and their parents, offering the possibility of re-enrollment in schools, employment opportunities, social acceptance, and improved prospects for marriage [6]. Undergoing surgery directly affects the level of the stigma perceived by parents. Parents of children without surgery perceive a higher level of stigma, which is consistent with previous studies [14] suggesting that parents of children with CL/P show obvious negative emotions in the first 3 months after the birth of their children without surgery. Therefore, the initial 3 months emerge as a pivotal phase for health care professionals to alleviate parental anxiety and deliver emotional and educational assistance to parents of infants with CL/P. Through comprehensive nursing and presurgical support, mothers can enhance their early feeding capabilities, expedite the bonding process with their infants, and facilitate the infants’ swift recovery. Familiarity with CL/P beforehand serves to diminish maternal stress during initial interactions, mitigating anxiety and perceptions of discrimination. Consequently, encouraging mothers to engage with CL/P-related charitable organizations or fostering interaction among children with CL/P in shared spaces can effectively reduce anxiety and perception of stigma levels.

This study has several limitations. All the participants in this study were family members of children who were willing to undergo surgery, and no family members of children who were unwilling to undergo treatment were included, which may have led to selective bias. Parents filled out the scale based on recall, which may introduce information bias. The sample size of this study was small, as it was limited to hospitals only from 2 provinces with a large gap in economic levels between the 2 places, and fewer fathers were included in the study. Future studies should increase the sample size and broaden the scope of the investigation.

Our findings highlight a concerning trend of diminished quality of life among parents of children with CL/P. Factors such as parents’ education level, the status of surgery in children, depression, and social anxiety are shown to influence the level of stigma experienced by these parents. Implementing comprehensive nursing care and providing presurgical support are effective strategies for alleviating parents’ social anxiety, reducing perceived stigma, and preventing depression.