|Year : 2020 | Volume
| Issue : 2 | Page : 146-151
Health literacy and attitudes of caregivers of intellectually disabled children towards eye care
Lina H Raffa1, Mohammed R Algethami2
1 Department of Ophthalmology, King Abdulaziz University, Jeddah, Saudi Arabia
2 Faculty of Medicine, King Abdulaziz University, Jeddah, Saudi Arabia
|Date of Submission||01-May-2020|
|Date of Acceptance||09-May-2020|
|Date of Web Publication||21-Jul-2020|
Lina H Raffa
Department of Ophthalmology, King Abdulaziz University Hospital, Prince Majid Road, Al Sulaymaniyah, Jeddah 22252
Source of Support: None, Conflict of Interest: None
Background: The development of visual impairment in young children can negatively impact visual, motor, and cognitive function, and subsequently, affect the child's psychosocial functioning. Objective: The objective of this study is to assess the eye care status among children with intellectual disabilities (IDs). Methodology: A questionnaire was designed to explore the attitudes of parents toward eye care for their intellectually disabled children aged 3–17 years and possible barriers to accessing eye care between April 2018 and April 2019. Results: A total of 198 completed questionnaires were analyzed (19.3% response rate). Sixty-four caregivers (32.3%) believed in the importance of eye examinations for children with ID. Although 72 participants (36.4%) believed their children had visual impairment, 95 (47.9%) reported that their children had never received an eye examination in their lifetime. Only 80 caregivers (40%) had sought ophthalmological care for their children within the last 24 months. Having had a previous eye examination was not significantly associated with any sociodemographic factors. Among the caregivers' major reasons for not seeking eye care was the belief that their children did not need an eye check-up (68.9%), followed by prioritizing other medical issues (11.7%), transportation barrier/financial burden (5.8%), and lack of social support (4.9%). Conclusion: The vision care status among students with ID in special needs schools in Jeddah is poor, highlighting the necessity of establishing routine vision screening check-ups coupled with multidisciplinary health assessments.
Keywords: Belief, caregivers, disability, Saudi Arabia, survey, vision screening
|How to cite this article:|
Raffa LH, Algethami MR. Health literacy and attitudes of caregivers of intellectually disabled children towards eye care. Saudi J Health Sci 2020;9:146-51
| Introduction|| |
Visual problems such as refractive errors, strabismus, visual field defects, and reduced visual acuity are frequent in children with intellectual disabilities (IDs), with prevalence rates reaching up to 66.7%,,, underscoring the importance of regular vision screening assessments in special needs children. It has been reported that individuals with IDs have a higher prevalence of visual disorders compared to the normal population.,
Undiagnosed refractive errors is a major reason for correctable visual impairment. The development of visual impairment in young children can negatively impact motor and cognitive function, and subsequently, affect the child's psychosocial functioning. Simple interventions such as spectacle prescription in these children can help address their visual impairment in addition to improving their learning acquisition and social behavior. One study by van Splunder et al. even considered all individuals with profound learning disabilities to be visually impaired until proven otherwise. In spite of recommendations to refer a child of any age with a neurological or disabling condition for a visual assessment, few countries routinely follow these guidelines.,
Although guidelines exist to help clinicians screen for vision disorders in children of different ages,,, early intervention is more likely to be effective if the parents or guardians perceive their children's visual disorders,, which is not commonly the case in these children. Unfortunately, there is a distinct lack of awareness of the importance of eye care among parents, who consequently neglect eye care for their children.,, Studies conducted in developing countries reported that health-care providers did little to educate the parents about the importance of routine eye examinations for children., Furthermore, factors such as a poor socioeconomic status and misconceptions about eye care examinations and treatments were associated with an increased likelihood of parents not to seek eye care for their children.,,
It was previously reported that the vision care status was poor among individuals attending special needs schools in the Western Province of Saudi Arabia. However, there is a scarcity of studies that probe parental attitudes and history of eye care among children with ID in our setting. This study aims to investigate the eye care status among intellectually disabled children attending special needs schools in Jeddah.
| Methodology|| |
This study was conducted among intellectually disabled subjects attending special needs schools in Jeddah, Saudi Arabia, between April 2018 and April 2019, to assess their vision care status. Eleven randomly selected special education schools in Jeddah agreed to participate and were invited to partake. The number of pupils represented by these schools was 1025. In total, 202 caregivers responded and filled the questionnaire. The inclusion criteria included attendance at a special needs school in Jeddah, an age of younger than 18 years, and full completion of the survey. Four subjects who did not meet the inclusion criteria were excluded. A structured pilot-tested questionnaire was designed with 27 close-ended and 12 open-ended questions to explore the attitudes of parents toward eye care for their intellectually disabled children and possible hinders to accessing eye care for this group.
The questionnaire was distributed through the school administration and collected data on demographic, socioeconomic status, family history relating to eye health, eye care perceptions, utilization of eye care services, and child's vison status perception of the parents. All the data were collected from each school by hand in the form of hard copies. Follow-up phone calls were made to any school that did not return the questionnaire by the deadline.
Parents/caregivers of the children granted informed consent from the prior to inclusion. This study was approved by the Research Ethics Committee at the Faculty of Medicine (Reference No. 102-18), King Abdulaziz University Hospital. The research followed the tenets of the Declaration of Helsinki.
This study was analyzed using IBM SPSS version 23 (IBM Corp., Armonk, N.Y., USA). To define the characteristics of the study variables, simple descriptive statistics were used. Categorical and nominal variables are presented as counts and percentages, whereas continuous variables are presented as means and standard deviations. This study used a Chi-square test to establish a relationship between the categorical variables. An independent t-test was used to compare the group means. These tests were done with the assumption of normal distribution. Finally, to reject the null hypothesis, a conventional P < 0.05 was the criterion used.
| Results|| |
In total, 198 intellectually disabled participants were included in this study (19.3% response rate). The characteristics of the sample are shown in [Table 1]. The mean age of the participants was 9.67 years (95% confidence interval, 3–17 years). Of the 198 participants, 166 (83.8%) were born full term and 145 (72.7%) by spontaneous vaginal deliveries. Caregivers received a diagnosis for the reason of their child's ID in 92 (46.5%) of the cases. Among these causes were Down syndrome (n = 33, 35.8%), autism (n = 18, 19.5%), attention-deficit hyperactivity disorder (n = 18, 19.5%), perinatal asphyxia/cerebral palsy (n = 7, 7.6%), genetic/chromosomal disorders (n = 3, 3.2%), cerebral stroke (n = 1, 1.1%), and not provided (n = 12, 13%). Approximately 30 (15.2%) were reported to have chronic illnesses.
Awareness of eye problems and usage of eye care services
More than one third (n = 72, 36.4%) of the caregivers believed that their children were visually impaired. The number of participants who sought ophthalmological care within the last 24 months was only 80 (40%). The last eye checkup was reported to be over a year ago in 46 (23.6%) and less than a year ago in 34 (17%). Regular eye examinations (at least once per year) were claimed to be sought by 39/198 (19.6%) caregivers and less regularly (once every 2–3 years) by 41 caregivers (20.7%). Approximately 64 (32.3%) of caregivers believed in the importance of eye examinations for children with ID. However, 95 participants (47.9%) claimed that none of their children had ever received an eye examination in their lifetime. For the children who had received their first eye checkup, these checkups were carried out at age 2–4 years (n = 44, 22.8%), 5–8 years (n = 31, 16.1%), during infancy (n = 23, 11.6%), and finally, 9 years and above (n = 5, 2.6%).
Participants' major reasons for not bringing their children for an eye examination included the belief that their child did not need an eye checkup 71 (68.9%), prioritizing other medical issues 12 (11.7%), transportation and/or financial burden 6 (5.8%), or lack of social support 5 (4.9%). For those who had received appointments for their children, the appointment was postponed by 67 (37.2%) of caregivers. The type of health services available to the children is listed in [Table 2].
More than half of the participants' parents were not aware that children with ID had an increased prevalence of eye problems (n = 133; 67.2%). Of those who were aware, 35 (44.3%) got information through their medical team, followed by 23 (29.1%) from the Internet and 4 (5.1%) from their relatives and friends.
Approximately 146 (73.7%) of the caregivers reported that their children had never been referred for an eye examination. Of the 51 (25.8%) referred, the request was made by neurologists 13 (27.1%), ophthalmologists (8; 16.7%), pediatricians (7; 14.6%), followed by geneticists (6; 12.5%), and family physicians (6; 12.5%). The frequencies of the reported visual difficulties encountered by the participants in their routine daily activities as per their caregivers are illustrated in [Figure 1]. Only 17 (8.6%) of the children underwent eye surgery as reported by their caregivers, and a 14 (7.1%) was prescribed eye patches previously. Furthermore, only 28/50 (15.3%) of the children who were prescribed glasses wore them regularly. Among the most frequently reported oculovisual disorders were strabismus 24 (12.1%), astigmatism 13 (6.6%), nearsightedness 11 (5.5%), farsightedness 10 (5.1%), and cataract 5 (2.5%). Moreover, lazy eye and blindness were reported by the caregivers in 6 (3%) and 6 (3%) of children, respectively.
|Figure 1: Frequency of reported visual difficulties encountered by the participants in their routine daily activities as per their caregivers' reports|
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Multivariate logistic regression analysis indicated that having had a previous eye exam, having received a diagnosis of ID, or having been prescribed eyeglasses were not significantly associated with average household income, one-versus two-parent households, type of health service, presence/absence of chronic illnesses, or parental job status. Conversely, children whose mothers had higher educational levels were more likely to have received a diagnosis for the ID (P = 0.017). In addition, children who were born preterm were significantly more likely to develop a lazy eye (P = 0.019). Consanguinity, reported in 72 (36.4%) of the sample, was found to be significantly correlated with a positive family history of glaucoma (P = 0.044) and near sightedness (P = 0.006), neurological diseases from the paternal side (P = 0.027), and a history of astigmatism in the child (P = 0.005).
| Discussion|| |
Our study incorporates a range of sociodemographic factors and offers a comprehensive account of the eye care status among intellectually disabled children attending special needs schools in Jeddah. It focuses not only on the reported prevalence of eye disorders among intellectually disabled children but also on some parental misconceptions around eye care for children and young adults and barriers to access eye care services. Of note, our analysis shows sociodemographic disparities in the use of eye care services in Jeddah. A previous report indicated a high rate of unemployment among mothers of intellectually deficient children, which is in agreement with our results–147 (74.2%) of the mothers were unemployed. Some investigators also found that a low income was reported in 31% of families with intellectually deficient children, which is in line with our findings that 66 (33.3%) of the families had a low average household income.
Residence ownership has been associated with better health-seeking behaviors;, however, this was not observed in our study. Other investigators found that there was no relationship between knowledge/barrier scores and socioeconomic status or the level of parental education except for ethnicity, which concurs with our results. We found no relationship between seeking eye care and different socioeconomic factors.
Despite the high prevalence of consanguinity in our sample and the high incidence of common eye diseases in such cases as reported in the literature, such a correlation was only reported with astigmatism in children in our survey. The high rate of oculovisual disorders demonstrates the need for assessing visual functions in intellectually disabled children.,, Furthermore, parents' poor understanding of the importance of eye examinations for children with ID suggests that fundamental misconceptions may be inhibiting their competence in facilitating their children's eye health. This inhibition was reflected by the low frequency of ophthalmological visits reported in our sample. Another common issue was parents' belief that their child did not suffer from eye problems or had never complained about eye issues. Such misconceptions have also been reported by other investigators, who found that parents' poor perceptions of pediatric eye diseases may hinder a child's early eye care.,, In the absence of visible signs of a visual complication in a child, the etiology may remain hidden unless the child is examined by a qualified eye care professional. If the condition is left untreated, the subtle negative effects of visual disorders may progress into more debilitating problems within a few years or problems that end up requiring surgical intervention.,
Today, the benefits of health care to address the needs of persons with ID have gained increased attention. In our sample, most children with ID relied heavily on public care (62.1%), some (12.6%) were covered for at least some healthcare needs by private insurance policies, whereas others, to a lesser extent (21.2%), had no public health care access/insurance coverage and sought care privately (cash patients).
Although guidelines for the diagnosis of vision problems in intellectually disabled persons are being revised continuously, recommendations generally include frequent eye care visits at a young age to detect preventable visual impairments., Nevertheless, no guidelines are followed in many countries to date. This explains why our finding that as many as 95 (47.9%) had never had an eye examiation in their lifetime is not unusual despite the recommendations. This result is multifactorial and cannot be attributed to one reason. Due to inadequate knowledge of physicians about the unmet health needs of people with ID, many of these children are referred late or even deprived of these health services. More than two-thirds 164 (73.7%) of the children in our sample were never referred for an eye examination, depicting the lack of awareness of the benefits of early intervention to promote optimal health, which is common in low- and middle-income countries.
The need to focus on changing parents' health-seeking behavior for their intellectually disadvantaged children is a vital component of any preventive strategy. While public health campaigns have tended to address both prevention and active management of eye diseases in children, this study underscores the need to address barriers to pediatric eye care among intellectually disabled children. We believe some of these barriers can be circumvented by incorporating routine eye examinations or medical screening in special needs schools. Doing so will serve as a means of identifying visual problems and referring these children for early eye care. However, a low proportion of caregivers obtained their information from a medical professional (n = 35, 44.3%), stressing the need to educate the health-care providers involved in caring for these children about the benefits of providing useful health information. An even lower proportion obtained information about their children's health from the Internet (n = 23, 29.1%), highlighting the importance of providing parents with web-based child health websites to avoid the sometimes-questionable quality of online health information. In addition, focus should be placed on educating parents and caregivers about the medical implications of delaying the management of visual disorders and the effect of these disorders on children's psychosocial well-being.
A major strength of this study is that it is, to our knowledge, the first study that assesses the eye care status among intellectually disabled children attending special needs schools in Jeddah, Saudi Arabia. However, this study should be interpreted in light of its limitations. In addition to the limitations inherent to cross-sectional studies, this study is limited by its small sample size and poor response rate. In our opinion, two major reasons could account for the poor response rate, including lack of public awareness of the importance of eye care in this group of children and/or lack of interest/incentive. Therefore, further research with a larger sample is warranted for a better exploration of eye care status among mentally disabled children in Saudi Arabia. Another limitation is our use of a nonvalidated questionnaire to assess eye care status among special needs school children.
| Conclusion|| |
A large proportion of the special needs children (47.9%), a high-risk group that requires periodic eye care, had never utilized any eye care service in these schools. Our findings highlight the necessity of establishing vision screening routine check-ups and establishing referral guidelines for this under-privileged group. In addition, it is necessary to promote public-based campaigns directed at schools and health-care sectors to provide the basic eye services needed for the wellbeing of children with ID. Furthermore, this study draws attention to some eye care related parental misconceptions, suggesting that efforts should be made to better understand the familial, cultural, and psycho-social barriers faced by these families. Well-designed studies are needed to further explore the awareness of the public, school owners, and health professionals involved in caring for these children in Saudi Arabia.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]