People with Down syndrome (DS), an intellectual disability that limits cognitive ability, have a lower quality of life (QOL) compared to the typical population. There have been many studies exploring possible methods of increasing DS QOL: three key solutions are friendship, physical activity, and sheltered environments. Since extracurricular activities incorporate all three of these, this study aimed to explore the correlation between improved QOL and participation in extracurriculars. The two most popular extracurricular activities were chosen and quantitative data was produced. The aim was to address the question: between sports and fine arts, which extracurricular activity is most emotionally beneficial for people with DS as rated by their QOL score? Three categories were tested: sports, fine arts, and both. Two digital questionnaires were created to evaluate the QOL of DS patients and their parent/guardian respectively. Both questionnaires were administered in person and through online platforms revealing that participation in both sports and the fine arts is the optimal choice for those with DS. Nevertheless, when addressing the primary question sports is preferable over the arts.
A prevalent issue amongst those with Down syndrome (DS) is their lower quality of life compared to healthy members of the population. DS is the most common chromosomal disorder leading to intellectual disabilities, with the population affected projected to increase. Thus, their lowered QOL is a prevalent matter that needs to be addressed. Haddad et.al discovered this decreasing trend and explained that their lower QOL results from a lack of social interaction and the perceived burden of their medical condition. Their findings confirmed friendship as the most effective solution to increase QOL, in addition to a sheltered environment and physical activity. As these three factors are separately proven to increase the QOL of people with DS; it can be concluded that environments that host all three factors may be solutions to the decreasing trend.
Extracurricular activities incorporate both the primary and secondary solutions offered by Haddad et.al. They are classified as sheltered environments, which are environments that are not open work or school. Extracurriculars involve physical activity and harbor friendships necessary to improve QOL. Additionally, more than half of the American adolescent population partakes in extracurricular activities, making them an ideal testing environment in which to begin general research. Nevertheless, previous research on those with DS and their QOL is scarce; research comparing the QOL between people with DS in different extracurricular activities is unprecedented. This study addresses this gap, commencing the first of many studies in this field. Information from the Child Trends Data Bank was used to choose the two extracurriculars of interest, as they were the most popular categories and could produce quantitative results. Therefore, this study aims to discover which activity is most emotionally beneficial for people with DS.
When analyzing which category is most beneficial for children with DS, three aspects need to be considered: physical, mental, and emotional health in relation to QOL. The physical aspects of health that affect QOL are the correlations between motor skills and wellbeing. For example, El-Hady et.al found a moderately negative correlation between children with DS and impaired gross motor skills (movements of large muscles in the arms, legs and torso) and QOL. Therefore, a possible solution to increase QOL is to improve gross motor skills. To explore this further, Bendak conducted a study comparing DS children with and without physical activity; her results show significant statistical improvements in the group performing physical activity as compared to the control group.
Thus, sports programs may provide many benefits due to their central component of physical activity; indeed, there have been conclusions that chest-targeted strength training has positive effects on lung functions for children with DS. Since strength training is a vital component of most sports, participants with DS that may have common pulmonary problems would benefit from a sport heavily focused on improving respiratory function.
In contrast, the fine arts tend to focus on fine motor skills (movements using small muscles in hands and wrists) and speech. Rose states that being in a music program allows those with special needs to exercise their fine motor skills through the practice of embouchure and fingering. Embouchure is how a wind instrument musician blows into the mouthpiece of their instrument and fingering is the act of placing fingers on the strings to mimic notes; these practices utilise small muscle groups instead of the larger muscles seen in physical sport. Rose adds an additional perspective, explaining that the fine arts develop gross motor skills by improving “the relationship between force, time and space, and…control over [one’s] velocity within these concepts.”
Studies into the mental and emotional health of DS patients frequently reference the effects on their quality of life. Barshikov and Lejeune explain how the lower social reasoning abilities of people with DS decreases their QOL. Another factor contributing to their decreasing QOL is the lack of social inclusion, namely, how well one relates to those in their community. Gee and Gonsier-Gerdini interviewed special needs teachers who have experienced the lack of social inclusion first-hand. The teachers explain that the segregation between special needs students and mainstream students in schools leads to those with special needs being overlooked by head members of staff. This makes the children more susceptible to lower mental and emotional health.
Extracurricular activities can facilitate the integration between people with DS and the typical population. For example, art provides the opportunity to apply learned skills into everyday life, especially when interacting with peers. This develops their knowledge, skills and understanding and may therefore increase the social reasoning of children with DS. Cesarone complements these findings by explaining how fine arts education, both visual and musical, “fosters critical thinking skills, develops valuable workforce skills, [and] builds values that connect children to themselves and to their cultures.” Within sports, however, the methods for improving integration is via encouraging teamwork. Termini and Sciurca state that teamwork in sports allows for the building of social skills which can then be attributed with increased self-esteem in DS patients, providing a therapeutic protected space in which to interact with peers. This further supports the role of sports in improving health-related QOL.
The effects of labeling is an ongoing debate within the special education society. It is based on the underlying labeling theory, an aspect of sociology stating that people tend to behave in ways that reflect and support the stereotypes associated with their label. Arshi et.al explains that labeling, “can either exaggerate or fail to capture the actual nature of people who differ from what society considers normal.” Due to its ambiguity, it cannot be deemed as a direct cause to decreasing QOL; nevertheless, if addressed, it may result as a possible solution to QOL. If labeling is solely used by medical professionals, it can serve as awareness and understanding of the disability allowing them to develop alternate methods to improve QOL. However, some suggest that labeling should be discontinued by the typical population because it may encourage labelled individuals to conform to the characteristics of the label.
Although there are no studies showing direct correlations between extracurricular activities and their effect on labeling, conclusions can still be drawn from the results of other studies. Darrow, a professor of music education at the Florida State University in Tallahassee, reveals the ways that music helps special needs children reach their full potential by giving them normalised life experiences to decrease the perceived gap between affected and normal individuals, where labeling would otherwise exacerbate the problem. Sports also improves emotional stability and promotes morality in people with DS, resulting in a better self-image.
A solution to improve the QOL of people with DS can be addressed by extracurricular activities, both sports and the fine arts. The two activities improve the physical, mental, and emotional health of DS patients, thus benefiting their quality of life. Additionally, they improve both social skills and critical thinking, integrating lessons learned into everyday life. Considering this research, this experiment hypothesizes that sports will be more effective in improving the QOL of participants than fine arts.
Actions and Steps
This study uses a mixed method of administering a questionnaire that measures QOL as created by the head researcher, Latorre-Lagos, and the mentor of this study, Petrick, who has a Master’s degree in psychology. This questionnaire study evaluates the QOL of individuals with DS in two different extracurricular activities to see which one is the most emotionally beneficial for people with DS. The extracurricular activities, sports and the fine arts, were chosen based on popularity and the ability to produce quantitative results. The two questionnaires used were directed towards a sample of people affected by DS and their parent/guardian, with the same questions used in both. However, the DS questionnaire has additional images to facilitate understanding.The questionnaires can be found in the appendix:
Figure 1 is the parent/guardian questionnaire and Figure 2 is the DS participant questionnaire. Haddad et.al findings were used as a basis for the questions in this study’s questionnaires.
- Questions 1, 2, 4, and 5 pertain to the participant’s emotional health:
(1) How happy do they feel?
(2) Do they feel sad often?
(4) Do they feel lonely?
(5) Are they happy at school?
- Questions 3, 6, 7, and 8 ask if they have access to factors that improve quality of life:
(3) Do they have alone time?
(6) Do they participate in fun activities during the week?
(7) Do they spend time with family?
(8) Do they spend time with friends?
- Questions 9-11 ask how the participant with DS feels physically:
(9) Are they healthy?
(10) Do they get sick often?
(11) Do they feel strong?
The questions were created based on Peterik’s graduate school research within the special needs community and Latorre-Lagos’s previous background research on QOL. Previous research explored the emotional health status of the participants with DS, by focusing on medical burdens, leisure activities, and interactions with family members and/or peers.
In addition to the questions, a consent form is attached to each questionnaire informing the participants about the study, explaining how confidentiality is kept, and to obtain written approval from both the participant and their parent/guardian, if they are a minor. The consent form is displayed with their respective questionnaires in the appendix.
The questionnaires were digitized through Google Forms to reach a larger demographic through the internet. Google Forms was used to create the questionnaire because it is a reputable site and allows the head researcher to see all data easily. Additionally, it requires the participant to sign a consent form before continuing to the questions.
In order to carry out this study, potential participants were contacted via email, Facebook and/or Instagram, through telephone and/or in person. Down syndrome facilities, bloggers, relevant Facebook groups, and other organizations were also contacted and asked to advertise the digital questionnaires.
Participants in the Miami-Dade and Broward area were given the questionnaires in person. If the participants were reached via the internet platforms, they were sent a link via email, Facebook, or Instagram. The combination of both methods creates a random sample where people of any age, gender, race and/or background could answer the questionnaires, allowing the results to be representative of the wider demographic. The respondents were from the LEAP South Florida facility, and the remaining online respondents were from Facebook, totaling to 55 participants.
After all the responses were collected, each individual answer was assigned a code to quantify the QOL score. Since each question was given three answers to choose from, the answer choice indicating a good quality of life was assigned a one, the answer choice relating to a medium quality of life was assigned a two, and the answer choice relating to a low quality of life was assigned a three. After all the responses were coded, each participant received an individual QOL score based on the average of their coded answer choices. Therefore, lower average scores indicated a high quality of life. Three answer choices were provided because it made the questionnaires simple for the participant while providing the researcher with sufficient data to calculate a reliable mean. Once the participants’ answers were coded and individual QOL scores were determined, each extracurricular activity was given a general QOL score based on the average of all the individuals QOL scores in that category.
The diagram below shows an example of two questions with answers from the questionnaire for people with DS explaining how the QOL score for each individual was calculated. It also explains how the QOL score for each extracurricular activity was calculated using the individual QOL scores. Since there was no control group, it could not be said which numbers indicate a low, medium, or high QOL, however the average QOL numbers between different extracurriculars are compared in the results section to see which category produces a higher QOL.
|Participant #1||Participant #2|
|Calculation: 2+1=3 Add the codes
3/2=1.5 Divide by # of Questions
|Calculation: 3+2+5 Add the codes
5/2=2.5 Divide by # of Questions
|Average: 1.5||Average: 2.5|
|Average Category QOL Calculation: 1.5+2.5= 4 Add the average of each individual
4/2= 2 Divide by the number of individuals
Average QOL score: 2
The sample size, median, mode, variance, and standard deviations were found for each activity, to identify correlations or trends within the data. Two ANOVA tests and two independent t-tests were conducted for both the parent/guardian results and combined results (DS and parent/guardian) to determine if the data was statistically significant.
Statistical Test Descriptions
According to New View Statistics, an ANOVA test “looks to see what the variation (variance) is within the groups, then works out how that variation would translate into variation (i.e. differences) between the groups, taking into account how many subjects there are in the groups.”  An ANOVA test is used when comparing more than two categories, making it the ideal statistical test for this study’s three categories. The formula is:
- F = ANOVA coefficient
- MST = Mean sum of squares due to treatment
- MSE = Mean sum of squares due to error.
The formula for MST is given below:
- SST = Sum of squares due to treatment
- p = Total number of populations
- n = The total number of samples in a population.
The formula for MSE is given below:
- SSE = Sum of squares due to error
- S = Standard deviation of the samples
- N = Total number of observations.”
On the other hand, an independent t-test compares the means of two unrelated groups determining whether the two groups are statistically significantly different from each other; it either proves or disproves the null hypothesis. The null hypothesis for the t-tests in this study’s states that there is no difference in QOL levels between people with DS participating in sports and people with DS participating in sports and the fine arts. An independent t-test was used with the QOL scores between the two groups to see if there was a statistically significant difference between the two, proving one to have a higher chance of raising people with DS’s QOL. The formula for an independent t-test is below, mA and mB represent the means of groups, and nA and nB represent the size of the groups. S^2 is a method to find an estimate of the common variance of the groups.
The way the t-test determines if there is a statistically significant difference is by seeing if the absolute value of the t-test statistic (t) is greater than the critical value. The critical value is determined by the t-test table expressing the the percent of error allowed in relation to the degrees of freedom. The degrees of freedom is formula is below:
For this study the percent of error allowed is 0.05, meaning any number with a 5% or less chance of error is determined statistically significant. The percent of errors allowed are read left to right starting with the highest room for error, continuing to the lowest room for error; the lower the room for error, the more accurate the data is. The critical number is the number in the chart that is in the column of the choose percent of error and in the row of the degree of freedom, the critical values increase from left to right, so greater the t test statistic is, in relation to the critical value, the more accurate the data is said to be.
Responses from both questionnaires were combined to determine the main results, as the DS results did not reach the minimum number of participants (30) they were not examined individually. However, since the parent/guardian results reached a sample size above 30 they were examined separately and then compared to the main results.The independent variable of this study is the type of extracurricular activity; the dependent variable of this study is the QOL score. The descriptive statistics are the number of subjects, mean, median, mode, variance and standard deviation. Using the number of subjects, mean and standard deviation an ANOVA test was conducted to determine if this data, as a whole, was statistically significant based on its p-value. The p-value is the number the ANOVA produces to see if the data is statistically significant. The p-value must be under 0.05, meaning the data has a 5% or less chance of error. Another ANOVA test was conducted separately on the parent/guardian results to see if there were correlations, trends, and/or discrepancies between both data sets. Additionally, two independent t-tests were conducted with the QOL scores of the categories: sports and both (sports and fine arts). One, using all the results (DS and parent/guardian) and another using solely parent/guardian results. The t test statistic values, produced by the t-tests, may be used to see if the data is significant by referring to the t-table. However to make the t-test results simpler to understand the p values revealed by the tests were used instead to be able to be compared to the ANOVA results.
The results of the combined questionnaires are displayed in Tables 1 and 3. Table 1 contains descriptive data from all the questions combined while Table 3 lists the QOL score for each individual question. Additionally, it can be compared to Table 2, which displays the parent/guardian results. Table 4 shows the statistical test results for all the tests.
Table 1:Results from combined Questionnaire
|Extracurricular||Number of Subjects||Mean||Median||Mode||Variance||Standard Deviation|
Table 2: Results from Parent/Guardian Questionnaire
|Extracurricular||Number of Subjects||Mean||Median||Mode||Variance||Standard Deviation|
Table 3:QOL score for each question
|Question||QOL Score: Sports||QOL Score: Fine Arts||QOL Score: Both|
|Note: Lower QOL score equates higher QOL (1=highest QOL, 3=lowest QOL)|
Table 4: Statistical Tests
|Statistical Test||P-Value||Percent chance of error||T-Value
|Statistically Significant (P<0.05)||Reject or Fail to reject the null hypothesis|
|ANOVA Parent/Guardian||0.053||5.3%||N/A||NO||FAIL TO REJECT|
This questionnaire study sought to find out which extracurricular activity – sports or the fine arts – shows a greater correlation with a positive QOL, indicating a better emotional environment for people with DS. The hypothesis was supported when comparing the QOL scores between sports and fine arts; sports does show a higher correlation to a positive QOL over the fine arts. Nevertheless, sports came in second when comparing the QOL scores in the three categories: sports, fine arts, and both. When viewing the responses from the combined questionnaire, participants with DS involved in both programs have a higher QOL compared to the participants in just one extracurricular activity.
An ANOVA test was used to see if the data was statistically significant because of its frequency in similar scientific studies and its ability to compare multiple samples of data. Its use of variance between the three data sets ensures that it is the most accurate statistical test for this study. Variance measures how far the data is spread out, it is the “the average of the squared differences from the mean”. Additionally, an independent t-test was used between the two groups with the largest sample sizes (sports and both) to further validate the results by providing a direct comparison of those two means. A t-test was not conducted between the fine arts and another category because the sample size for the fine arts was too minimal and would negatively affect the percent of error in the results.
The null hypothesis for the ANOVA states that participating in both extracurriculars, doing purely sports and doing purely fine arts have the same effect on the QOL of people with DS. The alternative hypothesis states that doing both extracurriculars, as opposed to just sports or just fine arts have different effects on QOL for people with DS. This is because the ANOVA tests for variance, hence, the hypothesis can be quantified as variation in the data. Since the independent t-test identifies statistically significant differences between the mean QOL score in sports and both extracurriculars, the null hypothesis states that there is no difference in QOL levels between those participating in sports and those participating in both sports and the fine arts. The alternative hypothesis states that there will be a difference between the QOL score of people participating in sports and both extracurriculars. Both hypotheses in these statistical tests are very similar; the difference is that the ANOVA examines the variance while the t-test examines the means. Additionally, ANOVA takes into account all three samples while the t-test solely uses two samples: sports and both.
The independent t-test was used as a straightforward method of seeing if there was a significant difference between the two independent populations by measuring the two sample means and comparing them at a 5% or less room for error. Samples sports and both were examined in the t-test because they had a large enough sample size in both the combined results and parent/guardian results. The combined results yielded a p-value is 0.027 and the parent/guardian results yielded a p-value is 0.0105. Since both values are deemed statistically significant (p<0.05) the null hypothesis was rejected, there is a significant difference between the means. Participating in both extracurriculars simultaneous has a higher likelihood of yielding a positive QOL over solely participating in sports for people with DS. However since the t-test has a larger risk of type one errors and only accounts for two of the means, an ANOVA test was conducted with the three samples in this study to further validate the results.
The ANOVA combined results (Table 1), although showing category both to have a higher QOL, show sports to have the least variance in the data set. The variance for both was surprisingly high in the combined results, however, when comparing this to the ANOVA parent/guardian results, category both showed the least variance. The standard deviation (another way to see how spread out the data is) of category both shown in Table 1 and 2, confirmed the ANOVA parent/guardian results, they indeed has the least varied data. This means that out of the three samples, the most reliable and effective choice is participating in both extracurriculars to improve the QOL for people with DS.
These findings were proven statistically significant through the first ANOVA test because the P-value is 0.022, which is under the 5% allowance for error. The second ANOVA test conducted with the parent/guardian responses supported the combined questionnaire results, however, were not determined statistically significant (p-value 0.053) so further research is suggested in this sub-category. Nevertheless, since the discrepancy is 0.003, slightly shy of being significant (0.05), it is highly probable that these results may be proven significant with a larger sample size.
Previous studies have calculated the average QOL of the population with DS as a whole, whereas this study focuses on the QOL on the population with DS that participate in extracurriculars. Person et.al conducted a study where the individual factors they measured that affect QOL were similar to the questions asked in this questionnaire study, thus this provides a good basis of comparison. The results from this study and Person et.al’s research both show a positive correlation between extracurriculars and QOL. Those with DS who participate in extracurricular activities have on average a higher QOL than the participants in Person et.al’s study. Person also linked this QOL to social interaction, citing Haddad et.al’s investigation of the effects of friendship between the two studies. Person et.al’s research asked their participants to rate their competency in making friends, the percent of parent/guardian and DS participants who felt competent in this category was 63.5%. This study asked a similar question asking whether the participant with DS spent time with friends, the percentage of respondents that answered ‘sometimes’ and ‘yes’ was 93%.
Additionally, when considering the leisure activity factor of QOL, which falls under Haddad et.al’s solution of sheltered environments, Person et.al’s study has an average of 63% of their participants who were satisfactory in individualized leisure activity skills. Comparatively, this study has 96% of the respondents who were ‘sometimes’ and ‘mostly’ pleased with their factors pertaining to leisure activities. The difference in numbers between the two studies in both examples further supports the results from this study: participating in both extracurricular activities has a significant impact in benefiting the QOL of those with DS.
Additionally, this study previously evaluated different sports and fine arts research to see how each extracurricular activity incorporates one or more of Haddad et.al’s solutions to increase DS QOL. The findings involving people with DS that lack a certain level of friendship were also seen in Gee and Gonsier-Gerdini’s study, which showed a lack of special needs social inclusion., In response to this, sports researchers Joseph and Moloney (n.d) and Termini and Sciurca (2017) explain how sports integrates the typical and DS populations, thus building teamwork skills and improving self-esteem., Fine arts researcher Cesarone (1999) supports both studies by explaining how the fine arts connects children to themselves and their culture. Since there seemed to be stronger connections to the QOL solutions offered by Haddad et.al within sports research, it was hypothesized that sports would better enhance the QOL of people with DS over the fine arts. This was later supported by this study’s results.
The responses for question 8 of this studies questionnaire (Table 2), addressing the friendship solution by Haddad et.al, show that those who were in sports spent more time with friends than those who participated in the fine arts. This bolsters the claims that sports enhances positive integration.[17,18] Additionally, Haddad et.al conclude that medical burdens decrease people with DS’s QOL. This was examined in questions 9-11 which focus on health-related topics; in this section, sports participants averaged a better health level score over the fine arts. These results correlate to Hussein’s research claiming that sports improve the pulmonary and cardiac health of people with DS. Nonetheless, a limitation to this section is that the questions in the survey specifically asked how strong they participant felt, which is typically associated with gross motor skills, primarily used in sports over the fine arts. It is recommended for future researchers to include an additional question referring to the participants health in fine motor skills, which are strongly used in the fine arts, to be less biased.
These results will not only inform a wider community about the QOL of people with Down syndrome but also provide solutions on how to correct its decline. Since sports was the preferred choice between the two, this should encourage those who work with people with DS, as well as their parents and guardians, to incorporate at minimum sports into their lives.This study should also encourage future researchers to continue conducting research in this field and look for more solutions to QOL.
Limitations to this study were the small sample size which affected the validity of results, especially with those participating in only the fine arts. There were also time restraints and limited extracurricular choices. Further developments could be done by asking for sex and age in the study to see if there are correlations between different sex and age responses, as well as removing any confounding variables that may be associated with a participant’s age (emotional awareness or physical strength, etc). Adding a control group of participants not partaking in any extracurricular activities would be useful when comparing data, and multiple trials would further increase the validity of the results.
This experiment was facilitated by the use of online platforms; most notably the sharing of Google Forms questionnaires through multiple Facebook outlets. In turn, all the data was directly translated into Google Sheets and easily examined for trends and correlations. This paper built upon the previous research conducted by Haddad et.al and their findings of the low QOL of those with Down syndrome; three main solutions included were friends, physical activity, and a sheltered environment.1 While reviewing the answers to these questions in the questionnaire, it was shown that both sports and the fine arts extracurricular activities encompassed these solutions. Nonetheless, individually sports showed a higher probability of incorporating them over the fine arts, making it the preferred option between the two.
A new understanding was found that although any addition of sports would benefit QOL, participating in a combination of sports and the fine arts is more beneficial than partaking solely sports. Participating in both extracurricular activities seems to combine the benefits of each extracurricular making it the most effectual solution to improve the QOL of people with Down syndrome.
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Thank you to the Young Scientists Journal and all their editors who have helped transform my paper, especially Lucy Chen and Mhairi McCann. I am very grateful for the chance they have given me to publish my work! A huge thank you to my amazing teachers, Ms. Marrero and Ms.Cardona, who have taught me incredible research skills and have prepared me so well these past years at TERRA. I would also like to thank my mentor, Lauren Petrick, and LEAP South Florida. Lauren has been truly amazing, guiding me into so many opportunities and always willing to answer my millions of questions. I would especially like to thank my Mami, Papi and sister, Gaby, as well as my Abuelos, Tia’s, Tio’s and cousins; the best support team I could ever ask for! My wonderful family has supported me every step of the way and I am beyond blessed to have you all in my life. Most importantly I would like to thank God, my rock, because with Him all things are possible.
About the Author
Isabel Latorre-Lagos is a high school senior at TERRA Environmental Research Institute. Her hobbies include gymnastics, coaching and tutoring. She dreams of one day being a special education teacher, and hopes to continue conducting research, especially within the biology field. She plans on enrolling in a university after her high school graduation to keep on learning!