Keywords
child illness, education service, school engagement, satisfaction, hospital learning center
child illness, education service, school engagement, satisfaction, hospital learning center
Text update includes the area of introduction, study design with more specific method, participants (more details of selection procedure, table 4 has been removed and added as repository data, new table has been replaced with data from separate target group as the reviewer suggested, more discussion and conclusion.
See the authors' detailed response to the review by Shervin Assari and Babak Najand
As a crucial foundation for development, education should be equally accessible to all children, regardless of differences in social or physical status. Today medical advancements have increased the survival rate of children with chronic diseases to 90%, reducing mortality rates and complications1, and increasing life expectancy by as much as 20 years longer2. The prevalence of children with chronic diseases differs depending on definition. A survey in the United States indicated that approximately 20% of children had chronic illnesses3. In Thailand, the number is still unclear because chronic illness is defined as a long-term illness involving treatments that might affect the lifestyles of children and families4–6. Such changes can include absence from school, which could affect learning and social activities7,8.
The UN Convention of the Rights of the Child states that every child has the right to be protected and receive equal education9. As a member of the UN, Thailand implemented a law stipulating that “education is not only limited to the classroom”. Therefore, medical institutes have merged with special education centers to establish “learning centers in the hospital” so that pediatric patients can continue to have equal access to education. Making use of information technology to support education, the project is called “The Information Technology Project under the Initiative of Her Royal Highness Princess Maha Chakri Sirindhorn”. Similar learning centers in other countries involve the coordination of multidisciplinary teams to enhance social and learning activities or sick children.
The Queen Sirikit National Institute of Child Health (QSNICH) Learning Center in Thailand has been operating for 20 years. In the past10, education for sick children supported academic knowledge and daily living skills which made them feel included in society, and reflected educational and social perceptions of the related life adjustments and psychological conditions. QSNICH has previously conducted research11 on education for sick children, aiming to determine the effectiveness of learning centers in 36 provinces in Thailand. Hospital Learning Centers for sick children uses standardized curriculum established by Ministry of Education applicable for children at all education levels: pre-kindergarten, primary, secondary, tertiary levels, as well as vocational education. This curriculum is a collaboration between MOU partners: Ministry of Education, Ministry of Public Health and Ministry of Science and Technology.
All of the operational process needs to follow Clinical Practice Guideline (CPG) and pass an external audit from the third party to ensure that the education that is delivered to sick patients in every hospital learning center meet the standard.
With official ministry-level collaboration among various parties to obtain operational results regarding continued learning for sick children and the associated factors12, QSNICH has provided a model for other hospitals across Thailand to ensure that all sick children have equal access to education.
This study has been extended from previous research13 on the effectiveness of the learning center at QSNICH, which investigated the associated factors affecting further education of children with special needs. The aims of this study were to determine the effectiveness of 36 other network learning centers across Thailand for the continued education of pediatric patients, as well as the factors associated with the patients’ further education. It also evaluated parents’ attitudes toward their children’s illness and education, as well as service satisfaction of the center.
This research was conducted in a form of natural experimental study which variables are influenced by nature or factors outside of the researchers’ control. Cross-sectional design has been implemented in this study where a group of population from all the 36 learning centers in the hospitals across Thailand was selected based on the inclusion criteria set for the study: types of illnesses, patient’s and parent’s demographic information in order to measure the effectiveness of the project and to examine the factors correlating with continuing education of children under HSH project, patient’s attitudes and patient’s satisfaction towards HSH project. The study used a survey to collect information (Extended data14) from January 1, 2018, to December 31, 2018.
The target population included 4,430 child patients aged 4–18 years as well as 4,430 parents who had taken care of the child for at least six months, meaning that the total study population included 8,860 individuals. The sample size calculation was based on Wayne15. The total number of pediatric patients from 36 learning centers at the hospitals was 30,000 (n=30,000), and the incidence of children who went back to school was 80% (p=0.8)). The selection of a sample in this study was a voluntary response sample from all 36 learning centers in Hospitals across Thailand. That is, after the instruction was given to the participants, they were able to participate in the study voluntarily. If the number of participants were more than expected population, a random sample selection would be implemented.
The survey was conducted by the researchers after the parents gave written informed consent for their child to participate. For children aged 4–7 years, parents were asked to participate in the survey on behalf of the child. The session was audio recorded for data analysis. In order to access the data, a permission from the Human Ethics Committee of the Ministry of Public Health that oversees all 36 network hospitals must be approved.
Inclusion criteria: 1) Pediatric patients age between 4–18 years who are attending learning centers at the hospital; 2) Pediatric patients who have attended learning centers more than 2 times; 3) pediatric patients with chronic illnesses who are admitted at the hospital or needed consecutive follow-up.
Exclusion criteria: pediatric patients with serious illness and life-threatening conditions.
The survey was divided into four parts: (1) demographic information of the children and parents (gender, age, cause of admission and length of stay (Table 1)), (2) information about the patient-parent relationship, and (3) satisfaction with service at the learning centers (measured using Likert scales of 1=unsatisfied, 2=poor, 3=fair, 4=satisfied, 5=very satisfied).
SAS 9.4 software was used for data management. Descriptive statistics, including percentages, means, and standard deviations, were used to analyze the population data and SAS 9.4 software was used to calculate frequency, percentage, mean, and standard deviation to measure the attitudes and satisfaction of the parents and children. Satisfaction data were divided into five levels, from strongly agree to strongly disagree, based on the statistical test results. Chi-square tests and t-tests were used to assess the variables associated with education continuance at the learning center.
The patient population was classified into three groups: those with common illnesses, chronic illnesses, and developmental disorders (n=4,430). There were a total of 4,430 caregivers: 82.94% were caregivers for patients with common illnesses, 82.68% chronic illnesses, and 72.34% developmental disorders. Biological parents or relatives comprised 17.07% of the common illnesses group, 17.28% chronic illnesses, and 26.95% development disorders; foster parents or teachers accounted for 0.06%, 0.04%, and 0.71%, respectively. Most caregivers were women (75.74%, 80.83%, and 82.62%, respectively), of Thai nationality (99.26%, 99.33%, and 99.65%, respectively), and Thai ethnicity (97%, 98.83%, and 99.65%, respectively). Other ethnicities included Akha, Lahu, and Burmese. The main religion was Buddhism (92.01%, 94.51%, and 97.87%, respectively), followed by Islam and Christianity. Most caregivers were aged 31–40 years (43.71%, 39.89%, and 34.40%, respectively), followed by those aged 41–50 years (23%, 39%, and 40%, respectively) and 21–30 (17.29%, 13.7%, and 18.86%, respectively). Most parents had completed vocational level, or high -school level education, followed by those with a primary or secondary educational level. Most parents were employed in labor (41.5%), agriculture (23.09%), and sales (11.22%). Most parents were married, separated, or divorced and had monthly household incomes of 10,0000–30,000 baht, followed by 5,000–10,000 baht; only a small number had incomes of >30,000 baht or <5,000 baht. Most families owned a house, while some rented a house or room. Only a small number lived with a relative. Most repondents lived in the northeastern part of Thailand.
Of the 4,430 patients, 1,764 patients had common illnesses, 2,384 chronic illnesses, and 282 developmental disorders. In general, the caregivers of all three types of patients rated the following issues similarly. Regarding illness severity, 29.9% rated it at the minimum level, 33.6% moderate, and 20% somewhat high. Regarding when the child became ill, 43.8% of caregivers always informed teachers while 24.02% often did so. Approximately 35.7% were somewhat highly confident that their child could get along with their peers, while 24.0% were somewhat confident and 24% were highly confident. Likewise, 37.8% of caregivers put somewhat high effort to into helping their child, while 25.0% made a high-level effort. Approximately, 37.6% frequently explained the assignments to their child, and 27.5% always did so. About 37.6% had high confidence that the school provided appropriate study plans for their child, 25.5% were moderately confident, and 26.1% were extremely confident. About 34.6% of patients discussed what happened in school with their child, and 23.3% did so all the time. Regarding caregivers’ confidence in encouraging their child to control their emotions, 37.6% were somewhat highly confident, 23.5% moderately confident, and 19.6% extremely confident. About 84% of caregivers sent their child to school every day.
During hospitalization, 25.1% of the patients were in kindergarten, 58.7% in primary school, and 13.8% in secondary school. After discharge, 22.3% in kindergarten, 57.5% in primary school, and 15.6% in secondary school. About 20.9% of the patients lived <1 km from school, 53.4% lived 1–5 km away, and 25.3% lived the same distance as before joining the learning center. About 57.0% traveled to school by bicycle/motorcycle, 17.3% by private car, and 20.0% by public transportation; the means of transportation remained almost the same before and after being treatment at the center.
As shown in Table 2, 28.5% of common illness patients were in kindergarten, 57.1% in primary school, and 13.2% in secondary school. After discharge, 28.0% were in kindergarten., 57.3% in primary school, and 13.3% in secondary school. Approximately, 15.7% lived 1 km or less from school, 56.8% 1– 5 km, and 27.5% the same distance as before entering the center. About 56.4% traveled to school by bicycle/motorcycle, 16.9% by personal vehicle, and 21.5% by public transportation. Transportation type remained largely the same before and after the treatment at the center.
Before entering the center, 23.3% were in kindergarten, 59.6% in primary school, and 14.9% in secondary school. After discharge, 18.5% were in kindergarten., 57.1% in primary school, and 18.0% in secondary school. About 24.3% of patients lived less than 1 km from school, 51.3% 1–5 km, and 23.7% the same distance as before entering the center. About 58.3% traveled to school by bicycle/motorcycle, 17.5% by personal car vehicle, and 18.4% by public transportation. Means of transportation were mostly the same before and after treatment.
Before entering the center, 19.5 % of patients were in kindergarten, 61.4% in primary school, and 9.6% in secondary school. After discharge, 18.4% were in kindergarten, 62.4% in primary school, and 9.6% in secondary school. About 24.1% of the patients lived less than 1 km from school, 50.4% 1–5 km. away, and 24.8 the same distance as before. About 50.4% traveled to school by bicycle/motorcycle, 18.4% by private vehicle, and 23.1% by public transportation. The means of transportation were slightly different before and after entering the center.
As shown in Table 3, satisfaction surveys were distributed to two groups of patients: those who continued their education and those who did not. Scores were classified into five ranges (1.00-1.80 = strongly disagree, 1.81-2.60 = disagree, 2.61-3.40 = uncertain, 3.41-4.20 = agree, and 4.21-5.00 = strongly agree). The average satisfaction score of the two groups was 4.21-5.00. Patients who continued their education thought that the lessons in the classroom were interesting; they scored this item higher than the other group did. Entertainment had been used to provide amusing and relaxed learning for these children. The patients who did not continue their education were those in final stage of life.
Table 4 shows the variables related to the continuation of education of children in each type of illnesses. Since gender is an uncontrolled variation, the researcher has selected the factors that are more likely to affect the continuation of children which are number of siblings and family income. After analyzed separately, the study found that, parents with more than 2 children are likely to discontinue education of the child with chronic diseases or with developmental problems. At the same time, family with monthly income lower than 5,000 baht considered to stop further education of the sick child. With economic constraints, parents may need to think about the cost-effectiveness of sending their child to school. It must be decided that delivering a normal developmental child may be more cost-effective than children with chronic illnesses or developmental delay since education cost is not the only expense under parents’ responsibility, but also healthcare cost or medication cost for the sick child. In contrast, the study found that number of siblings and hospital length of stay do not correlate with normal children to further education because normal school system allows them to go back to school after they recover.
The 36 learning centers in this study were located in primary or secondary hospitals that had accepted patients from local hospitals in the area. Most patients had chronic illnesses, mostly related to hematology, cancer, and heart disease. This study’s results align with those of previous studies10,11,13,16,17 of tertiary hospitals. About 45% of patients had common illnesses associated with gastroenterology, respiratory disorders, and accidents. The 282 children in the developmental disorder group had attention deficit hyperactivity disorder, intellectual disability, autism, and learning difficulties.
Compared to research10 conducted in 2000, the number of children with developmental disorders at the learning centers had increased. This is perhaps attributable to patients with physical and developmental disabilities now having better access to education. The average ages of patients with chronic and common illnesses, and developmental disorders were 9.65 years (7.10–12.44), 8.69 years (6.17–11.19), and 8.85 years (6.90–11.11), respectively. Children with chronic illnesses were more likely to discontinue education because of limitations imposed by their health conditions, namely, a high risk of becoming infected or receiving treatment during the academic year. In such cases, modified education plans were introduced. Distance learning, facilitated by technology, is recommended to help patients to keep up with classes, and stay in touch with friends, which would reduce awkwardness when they returned to school. Mobile education can overcome teacher-related limitations, and it has the advantage of allowing children to select lessons for themselves. Other factors that deprived children to attend school in this study were distance from home to school, type of transportation, education level of parents, marital status, and income. However, other factors such as nationality, ethnicity or religion had no relationship with the continuation of education statistically. The results of this study were different from the a previous study11; travel distance and types of transportation in the city did not affect education as much transportation in the country.
Teachers’ roles must be adjusted in the assessment guidelines18–20 and they must be able to work with patients who have different physical and psychological conditions and education. Teachers should facilitate extra lessons for patients through special classes or e-learning, and help them pass their exams. International research studies13,21,22 have found that “bibliotherapy” is an effective method to for reducing anxiety, and developing skills related to learning, emotion regulation, and social interaction.
We found that parents perceived their child’s chronic illnesses as moderately severe to seriously severe. For children with common illnesses, parents found that these illnesses were not moderately severe. Most parents of children with chronic and common illness highly recognized the importance of social modification, they always kept the school updated and were highly confident that the school could provide an appropriate plan for their children. Parents of children with developmental disorders were moderately to highly confident that their child was able to build relationship with friends. Teaching and psychological skills of the teachers were needed because each patient had a different physical condition, education level and psychological condition. They must be able to help the patients reduce anxiety, adjust to their health condition and give appropriate advice. Learning activities could be given anywhere outside the classroom to encourage a learning atmosphere.
In this study, the satisfaction survey of children at the learning center gave a high score of 4.21-5.00 (mean = 4.26, SD = 0.65) for every dimension. The item that was rated the highest score was that the children enjoyed participating in the activities. The item with the second highest score was that there was interesting and up-to-date content (for example, EDLTV is used in teaching according to international standard of the Ministry of Education). The third highest scoring item was that the activities were appropriate for learning (mean = 4.18, SD =0.79). Satisfaction in being part of fun and appropriate activities was rated the fourth highest item, while the item with the lowest score was that there was a variety of material and adequate facilities used in the activities (mean = 4.11, SD = 0.74).
The collaboration between learning centers and schools to monitor and refer patients, establishes a long-term plan and provide appropriate support help the patients a lot. The Cochrane library13,21 suggests promoting a law that would foster combined work by multidisciplinary teams from hospitals, families, schools, and communities. This way, services could be developed holistically22, and children would be encouraged to continue their education. Social and society family burdens would be reduced, which could achieve the objective of children growing up to be valuable assets of the country.
Socioeconomy factors were related to health and quality of life. After analyzed each group separately, the data showed significant correlations to further education: family income, number of siblings, parent's education. For example, children with developmental problems whose mothers work as housewives would go to school with them and learn child care guidelines from the teachers by helping their own child at school, and the mothers could implement this knowledge with their child at home; enabling their children to receive appropriate continuing education. In the future, there should be a public policy that supports caregivers and increases opportunities to access further education. Ministry of Education has training for mentors to take care of these children if the parents have full-time jobs.
Factors that were statistically significant were students' attendance and length of hospital stay, transportation and distance to school. For example, children with cancer who traveling by public transportation have higher risk of infection. Appropriate public transportation should be provided for sick children or special children. Children with disabilities have difficulties in transportation, public sectors should facilitate convenient commute to school, which will encourage children to return to school.
Relationships with friends and teachers were also essential to children with chronic diseases and children with common diseases more than children with developmental problems because the characteristics of children with developmental problems were taught in an individual manner. However, social skills are important to children with special needs because it will help improve life quality of these children. Therefore, this project allows these children to keep in touch with teacher and friends during hospital admissions, this encourages them to go back to school.
Even though the learning centers in hospitals has raised awareness among parents and children about the importance of education, and making parents and their child have better attitude towards education and satisfied with the services at the learning centers, the continuation of education still based on socioeconomic factors. The involvement of responsible organizations is essential in order to improve quality of life of these children. Therefore, appropriate educational management plans, youth care and education programs should be enforced in order to provide appropriate education that enables these children to achieve their full potential.
A good education system should allow all children to have equal access to education, including vulnerable children.
Improvement in technology supports distance learning, which combines patient ‘healthcare, education, and social life’, thus enhancing learning equity, and helping them to return to a normal life after reentering society.
The factors affecting education continuation should be recognized and considered in education planning for sick children.
Satisfaction should include every dimension of services for quality improvement.
The support from Special Education Act and multi-disciplinary team will lead to successful hospital learning centers
The study population was limited to children at 36 hospital learning centers in Thailand. Respondents from various institutes in other contexts should be included to increase diversity. Since different hospitals provide different types and level of services for patients with different needs, future studies should include learning centers in different types of hospitals throughout Thailand such as primary, secondary and tertiary care facilities.
This project contains the following underlying data:
Figshare: Survey data record of 36 learning centers, Thailand https://doi.org/10.6084/m9.figshare.13140659.v114
Figshare: Factors related to education continuation at the learning centers by the patients
Figshare: English survey.pdf, https://doi.org/10.6084/m9.figshare.8208338.v223
This project contains the following extended data:
Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0).
On behalf of the authors, a deep appreciation shall be sent to 36 hospital learning centers across Thailand, Ministry of Public Health and Ethic Committee, and Queen Sirikit National Institute of Child Health for supporting this study.
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Is the work clearly and accurately presented and does it cite the current literature?
Yes
Is the study design appropriate and is the work technically sound?
Yes
Are sufficient details of methods and analysis provided to allow replication by others?
Yes
If applicable, is the statistical analysis and its interpretation appropriate?
Yes
Are all the source data underlying the results available to ensure full reproducibility?
Partly
Are the conclusions drawn adequately supported by the results?
Yes
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Implementation science of maternal and child health
Is the work clearly and accurately presented and does it cite the current literature?
Partly
Is the study design appropriate and is the work technically sound?
Partly
Are sufficient details of methods and analysis provided to allow replication by others?
Partly
If applicable, is the statistical analysis and its interpretation appropriate?
Partly
Are all the source data underlying the results available to ensure full reproducibility?
Partly
Are the conclusions drawn adequately supported by the results?
Partly
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Developmental Behavioral pediatrics
Is the work clearly and accurately presented and does it cite the current literature?
Partly
Is the study design appropriate and is the work technically sound?
Partly
Are sufficient details of methods and analysis provided to allow replication by others?
No
If applicable, is the statistical analysis and its interpretation appropriate?
No
Are all the source data underlying the results available to ensure full reproducibility?
Partly
Are the conclusions drawn adequately supported by the results?
Partly
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: I am an expert of child development, social inequalities, and longitudinal data analysis. I also work related to chronic disease and mental health problems.
Is the work clearly and accurately presented and does it cite the current literature?
Partly
Is the study design appropriate and is the work technically sound?
Partly
Are sufficient details of methods and analysis provided to allow replication by others?
Partly
If applicable, is the statistical analysis and its interpretation appropriate?
Partly
Are all the source data underlying the results available to ensure full reproducibility?
Partly
Are the conclusions drawn adequately supported by the results?
Partly
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Developmental and behavioral pediatrician
Alongside their report, reviewers assign a status to the article:
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Version 1 11 Dec 20 |
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