Psychological and Social Challenges Parents of Children With Strabismus Face in Qassim Region, Saudi Arabia: A Cross-Sectional Study

Aim Strabismus or squint is when one eye is misaligned or looking in a different direction. Some people consider strabismus as a cosmetic problem, causing patients in this condition to be mishandled, especially children, which might affect their vision and their quality of life. This study aimed to evaluate the psychological and social challenges faced by parents of children with strabismus during the years 2020-2021. Subjects and methods This is a cross-sectional study conducted among parents who have children with strabismus onset from birth till the age of 16 years. A self-administered questionnaire was distributed among parents during their visits to the vision eye specialist center. The questionnaire included socio-demographic characteristics of patients with strabismus and a 12-item questionnaire to measure the psychological impact on the parents of children with strabismus. Results Out of the 105 respondents, 65.7% were fathers, and 55.2% had children aged six years old or less. The most prominent strabismus type was esotropia (where the eye turns inward; 38.1%), while the most common nature of strabismus was intermittent (76.2%). The mean total score of psychological impact was 36.2 (SD=8.15) out of 60 points, with 62.9% considered as having an average psychological impact. Moreover, 77.1% of the respondents believed that strabismus could be treated and improved. Conclusion There was a moderate psychosocial challenge among parents of children with strabismus. Out of all the subjects, mothers who had prior visits to government hospitals were noticed to be greatly affected psychologically as compared to other subjects.


Introduction
Strabismus is characterized by one eye looking straight ahead while the other eye may turn out, in, down, or up. The misalignment may shift from one eye to the other. In childhood, strabismus may impact vision, and it is a risk factor for the development of amblyopia [1].
Several studies report psychological impact and social bias towards children with strabismus [2,3]. A study conducted in India observed that 96% (n= 120) of parents of children with strabismus had a psychological and social impact because of their child's condition, and 91% of them even considered strabismus as a cosmetic stigma [4]. Another study conducted in Saudi Arabia found that 69% (n=233) of parents and children preferred orthotropic (normal eyes) faces as playmates over strabismic faces [5].
In the United States (US), strabismus is present in 2% of African Americans but is found in 3% of White preschool children [6]. However, in a study conducted in Riyadh, the capital city of Saudi Arabia, the prevalence of strabismus was found to be 0.5% in preschool children [7]. In the Qassim region in Saudi Arabia, strabismus is found in almost 5% of primary school children with amblyopia [8]. There could be 450 children with strabismus in the Qassim region among the 85,000 children who are younger than five years [9].
Previous knowledge about strabismus plays a significant role in the early intervention and treatment of strabismus in order to decrease the visual damage and economic burdens to society [10]. Citizens of the Qassim region have good knowledge and an excellent attitude towards strabismus [9]. However, in the Qassim region, no studies have been performed with the aim of understanding the psychological and social impact of strabismus on the parents of children with strabismus. In this study, we aimed to examine the challenges facing parents of children diagnosed with strabismus in the Qassim region of Saudi Arabia.

Materials And Methods
The psychological and social challenges have been assessed using a 12-item questionnaire validated internationally. Each question has a five-point Likert scale category ranging from "strongly disagree", coded as 1, to "strongly agree", coded as 5. The total psychological impact score has been calculated by adding all 12 items, and a score range from 12 to 60 points has been generated, indicating that the higher the score, the higher the psychological impact among the respondents. By using 50% and 75% as cutoff points to classify the psychological impact levels, participants were grouped as having a low impact if the score was less than 50%, as an average level if the score was from 50% to 75%, and as a high impact level if the score was above 75%.
Descriptive statistics were used to describe the overall group of respondents, including numbers and percentages (categorical variables), mean, and standard deviation (continuous variables). The differences in the score of psychological impact among the socio-demographic and the disease characteristics were conducted by using the Mann-Whitney Z-test. Statistical collinearity was measured using the Shapiro-Wilk test as well as the Kolmogorov-Smirnov test. The psychological impact score follows the non-normal distribution. Therefore, the non-parametric tests were applied. Two-tailed analysis with p<0.05 was used as the cutoff for statistical significance. All data analyses were performed using the Statistical Package for Social Sciences, version 26 (IBM, Inc., Armonk, USA).

Results
A total of 105 parents filled out the survey. Table 1 presents the socio-demographic characteristics of children and caregivers. Children aged six years or less were 55.2%, and nearly 60% were males. Approximately two-thirds (65.7%) who filled out the questionnaire were fathers. Regarding the mother's education, 71.4% had a bachelor's degree. Regarding the father's education, 47.6% had a bachelor's degree. In addition, 62.9% reported having children six years old or less since being diagnosed with strabismus.    *It is either the family did not understand the question, mostly they mean it is alternative or other types of strabismus Table 3 shows the assessment of the psychological impact on parents and children. It can be observed that the top three highest-rated statements that gave an impact psychologically were "You feel that your child's squint is bothering you" (mean score of 4.36), "You feel that others often notice that your child has a squint when he or she interacts with them" (mean score of 3.70), and "You feel that your child's injury may affect his or her performance" (mean score of 3.43). The overall mean psychological impact score was 36.  Responses ranged from "strongly disagree", coded as 1, to "strongly agree", coded as 5.
When measuring the differences in the score of psychological impact in relation to the socio-demographic characteristics of respondents (Table 4), it was found that a higher psychological impact score was more associated with being a mother to a child (Z=2.833; p=0.005) and the last visit to a governmental hospital (Z=2.879; p=0.004). Other socio-demographic variables did not show significant differences with the overall psychological impact score (p>0.05).

Discussion
The present study investigated the psychological and social challenges dealing with parents of strabismic children. In this study, we measured the overall psychological impact on parents by using a 12-items questionnaire. Based on the results, the overall psychological impact score was 36.2 (SD=8.15) out of 60 points. According to the given criteria, the majority (62.9%) were categorized as having an average psychological impact, 17.1% were categorized as high, and 20% were categorized as having a low impact level. Furthermore, increased psychological challenges can be significantly predicted among mothers and those who had the last visit to a government hospital. The negative impact of children with strabismus among parents was also discussed in a study done by Schuster et al. [11]. According to their reports, children and adolescents with strabismus were noticed to have a lower health-related quality of life in terms of mental health problems like hyperactivity/inattention and peer problems that greatly affected their parents. In another study done by Akay et al. [12], they compared the psychological disorders of mothers with strabismic versus healthy children. They found out that the mothers of children with strabismus had significantly higher depression compared to the control group mothers. They also exhibited significantly lower scores in democratic attitude, meaning they failed to establish a supportive and friendly relationship with their kids. These mothers were also associated with rejection of the maternal role more than those mothers in the control group. In contrast to this scenario, Alzuhairy et al. [9] documented that the parents of children with strabismus showed excellent knowledge about the signs and symptoms of the disease (50.6%) and also had a positive attitude (70.4%). Parents who have a good understanding of strabismus may have better management which could lead to a better psychological health condition.
The top five most common psychological challenges facing the parents were related to bothersome child squint, feeling that child squint may affect performance, the belief that others may notice their children squint upon interacting with others, feeling that strabismus may limit the child's vision, and belief that squint is a cosmetic deficiency. Consistent with our reports, these psychological difficulties being confronted by our population had also been mentioned and had been a challenge among the Indian population. According to the study done by Singh et al. [4], nearly all parents (96.7%) were bothered by the strabismus of their children, 91.2% considered squint a cosmetic stigma, 84.2% felt that their child's strabismus was observed by their peers during the interaction, 61.7% felt that making friends might be difficult for their children, and three-quarters (75%) felt unpleasant if someone asked something about their child's strabismus. The study concluded that some parents, specifically the less educated ones, showed a lack of understanding of strabismus, leading to a late diagnosis and ineffective countermeasures toward the disease. Contradicting these reports, a study carried out among Indian parents in urban areas [13] found that many of the parents (53.3%) were not concerned about what people think about their children's eyes, and nearly half of them (47.7%) never thought that people noticed their child's eyes unless they said something about it.
Moreover, some of the general characteristics of children with strabismus could contribute to parents' psychological condition. For instance, nearly two-thirds (64.8%) of the parents did not visit a pediatric eye or strabismus clinic during their last or first visit, while visiting the right specialist is vital to address the issue. We also discovered that the most commonly reported strabismus type was esotropia (where the eye turns inward; 38.1%), while intermittent was the most prominent nature of strabismus (76.2%).
Approximately one-quarter of parents (22.9%) believed that their child did not improve when wearing eyeglasses. While our respondents were affected by these incidents, in Jeddah [10], most respondents found strabismus to be treatable (71.5%) and had a good understanding of the risk factors and complications of strabismus. Family history (16%) and refractive eye errors (12.9%) were the most reported risk factors for developing strabismus. In addition, subjects agreed that if strabismus is left untreated, complications might occur, such as visual loss, cosmetic stigma, and poor self-image (55.2%).
Believing that strabismus can be treated and improved likely had a positive effect on parents with strabismic children. In our study, 77.1% of our parents agreed that strabismus is treatable. Only 1% of parents did not think the strabismus can be improved; this small portion of subjects can be explained by the setting of our study because parents who seek medical advice think their child's strabismus will be treatable. In Switzerland [14], surgical intervention for strabismus has been raised as the most probable treatment solution for young children. According to their reports, the acceptance of peers for children aged six years or older with a visible squint seems to be unlikely. Hence, since this pessimistic attitude towards strabismus appears to emerge at approximately the age of six years, therefore, corrective surgery for strabismus without prospects for binocular vision should be carried out before this age. Similarly, strabismus surgery could result in positivity in the quality of life among children. Temeltürk et al. [15] noted that children with strabismus had significantly fewer psychological issues and had a better quality of life post-surgery. Also, they were seen to have decreased anxiety symptom levels, including their parents, and the rates of ocular realignment were positively correlated with improvement in social and attention problems among children.

Limitations
One of the major limitations of this study is related to the sample size. Our sample was relatively small (n=105). It could be interesting to see a bigger sample that could generate better results which could provide a more accurate view of the psychological and social challenges facing parents of children with strabismus. Also, cross-sectional study, in its nature, is prone to disadvantages, including cause-and-effect relationships and bias.

Conclusions
There was a moderate psychosocial challenge among parents of children with strabismus. Of all the subjects, mothers who had prior visits to government hospitals were seen to be greatly affected psychologically as compared to other subjects. Furthermore, bothersome child's squint, worries that squint may affect child performance, limiting child's vision, and being noticed by others were some of the factors affecting the psychological state of the parents. The psychological effect of this disease can be decreased by health education targeting parents of children suffering from strabismus. Addressing psychological challenges experienced by parents could lead to better disease management which eventually will improve both parents and children's quality of life.

Appendices
Questionnaire