School and Community Involvement of Adolescents with Chronic Health Conditions

INTRODUCTION

Participation in after-school and community activities is important for adolescents’ development of human capital, social skills, and community ties.¹ Community engagement in adolescence, such as participation in school clubs/organizations, participation in community service organizations, and volunteering for social causes, has been linked to civic participation, educational attainment, and lower arrest rates in emerging adulthood.²

Between 2 and 24% of children in the U.S. are considered to a have disability, depending on the definition used.³ The lowest estimate (2%) is based on both having both “a medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months (p. xi),”³ and household income low enough to qualify for the Supplemental Social Insurance program. The highest estimate (23.5%) pertains to children with special health care needs,³ which government agencies define as children “who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”^3,4 Special health care needs can reflect a wide array of physical and mental health conditions, many of which can be disabling.³

The prevalence of activity limitations due to chronic conditions among U.S. children (the only measure of child disability for which national trends can be documented) more than tripled between 1960 and 2009 and this trend largely reflects increases in cognitive and behavioral disorders, which now represent the dominant sources of child disability in the U.S.⁵ This trend is thought to reflect some combination of increases in the prevalence of cognitive and behavioral disorders and changes over time in the definitions of disability and rates of diagnosis. Activity limitations due to chronic conditions increase with age,⁵ perhaps because some diagnoses are not made until children are older. These trends and patterns suggest that studies of determinants, correlates, or sequelae of child disability should focus on children of similar ages who were born in approximately the same year and, ideally, consider cognitive and behavioral disorders separately from physical disabilities.

School and community activities may be particularly important for children with disabilities. Such activities allow them to practice and apply academic, functional, and social skills learned in their academic curricula; develop and maintain social relationships with peers; develop self-determination, advocacy, teamwork, and leadership skills; and feel like a valued member of the community.⁶ Activities that involve physical exercise may also confer health benefits.

Despite the importance of school and community activities for the development of children with disabilities, previous research has found that children with disabilities are less likely than children without disabilities to participate,^7-10 and participate in fewer types of activities.^10,11 However, the existing studies are few in number, have focused almost exclusively on very specific types of disabilities, activities, and contexts, and have generally been based on small specialized samples. As such, findings from most previous studies cannot be generalized to children with disabilities at the population level or to school and community activities more broadly.

Four previous studies investigated associations between child disability or special healthcare needs and participation in school or community activities at the population level. Two used nationally representative U.S. data and the others used national data on children with activity limitations in Canada. These studies were not able to consider different types of disabilities or chronic health conditions,¹² focused exclusively on religious attendance,¹³ or did not include a comparison group of children without disabilities (so comparisons could only be made by type of disability).^14,15

In this study, we use population-based data from a national U.S. urban birth cohort study to investigate associations between chronic health conditions that are likely to be disabling and a range of school and community activities—including participation in sports, performing arts, clubs, religious activities, and volunteering—at age 15. We separately consider physical and developmental/behavioral conditions and compare children with one and both types of conditions to children with no conditions. By focusing on children of the roughly the same age born within a 2-year period and different categories of chronic health conditions and activities, the findings from this study provide important population-level information about the social participation of children with disabilities at a critical point in the life course.

METHODS

Data

We use data from the Fragile Families and Child Wellbeing (FFCWB) study, a national longitudinal birth cohort that randomly sampled births in 75 hospitals in 20 large U.S. cities in 1998–2000. By design, approximately 3/4 of the interviewed mothers were unmarried to address a lack of data on this population (almost 40% of births over past few decades have been out-of-wedock¹⁶). Face-to-face interviews were conducted with 4,898 mothers while in the hospital after giving birth.^17,18 Follow-up interviews were conducted approximately 1, 3, 5, 9, and 15 years later. Detailed information was collected from the mothers on their children’s health conditions at each time point and the teens were asked directly about their participation in various extracurricular activities at the 15-year follow-up.

Of the 4,898 children in the study, 3,444 completed the 15-year follow-up survey. Our sample was limited to teens living with their biological mothers all or most of the time, which reduced the sample to 3,019. Of those, 22 had missing data on outcomes and 44 had missing data on covariates, leaving a sample of 2,953 cases. Comparisons (at baseline) between the 2,953 cases in our sample to other 1,945 cases indicated that mothers who left the study had lower household income, were less educated, and were more likely to be foreign born, unmarried, and to have had low birthweight births.

Measures

School and Community Activities

At approximately age 15, the teens were asked about their participation in the following activities: athletic or sports teams; group performance activities such as orchestra, band, choir, dance, or theater; scouts or hobby clubs; school activities such as clubs or student government; religious services; and volunteer service activities. For each type of activity, the teens were asked “{Since school started this year/During the last school year}, how often did you spend time on each of the following? Please tell me if you never spend time on this, spend time on this less than once a month, at least once a month, once a week, or several times a week.” From the responses, we created binary variables for monthly participation for each activity and for participation in any activity. Each had a value of 1 if the teen participated at least once a month and 0 otherwise.

Chronic health conditions

To focus on ongoing health conditions that currently affected the teen at age 15, we considered both developmental/behavioral and physical health conditions using the mothers’ reports when the children were 9 and 15 years old (Appendix Table A).

Teens were coded as having a developmental/behavioral health condition at age 15 if any of the following conditions were reported by the mother at that survey wave: attention deficit disorder/attention deficit hyperactivity disorder (ADD/ADHD), autism, developmental delay, seizure, epilepsy, or depression. In addition, teens were coded as having a developmental/behavioral health condition if the mother reported at 9 years (the last time these conditions were asked about) that the child had Down syndrome or cerebral palsy.

Teens were coded as having a physical health condition if any of the following current conditions were reported at year 15: problem with limbs; heart disease; diabetes; high blood pressure; anemia; or activity limitations at home, school, or work because of allergies, digestive problems, headaches, ear infections, stuttering, or breathing difficulties. Although stuttering is a developmental disorder, the survey grouped that condition with 5 other physical health conditions when assessing activity limitations. Specifically, mothers were asked if the child had any of the 6 conditions, and if so which ones, and then if the child had activity limitations from any of those conditions (but not which ones). As such, it was necessary to consider stuttering a physical health condition. We also coded teens as having a physical health condition if any of the following conditions (which were not asked about at age 15) were reported by the mother at 9 years: sickle cell anemia, blindness (partial or full), or deafness (partial or full).

Teens who had at least one developmental/behavioral health condition and at least one physical health condition were coded as having both types of conditions.

Covariates

All potentially time-varying covariates were from the 15-year survey. In logistic regression models, we controlled for the teen’s gender and age (years); maternal age, race-ethnicity, foreign-born status, education, employment, and marital status; and number of children in the household and poverty category based on household income. The teens’ ages ranged from 14-19 years; while the plan was to interview subjects around their 15^th birthdays, it took time to locate and complete interviews with some respondents or it was expedient to interview some before they turned 15. The vast majority of teens in our sample (89%) were 15 or 16 years old the others were 14 or 17-19 (not shown).

Statistical Analysis

First, we compared teen, maternal, and household characteristics of teens with and without chronic health conditions. Statistically significant differences were ascertained using 2-tailed t tests for comparisons of means, with p=.05 as the threshold. Second, we estimated unadjusted and logistic regression models, with the latter controlling for teen, maternal, and household characteristics; estimates are presented as odds ratios (OR) and 95% confidence intervals (CI). Third, we estimated models that included a measure for more than one health condition and, alternatively, specific types of health conditions. Finally, we estimated models that used different cutoffs for participation in the various activities (weekly, or any participation). Analyses were conducted using Stata Version 15.0 statistical software. The authors’ Institutional Review Boards determined this study to be exempt.

RESULTS

Over one-third (1,038/2,953) of the teens in our sample had a chronic developmental/behavioral or physical health condition (Table 1), while almost half of U.S. adolescents ages 12–17 (45%) had at least one of 27 chronic health conditions in 2016-17.¹⁹ Of the 1,038, 692 had developmental/behavioral health conditions, 541 had physical health conditions, and 195 had both types (Appendix Table A). Almost half of the children with developmental/behavioral health conditions had depression (325/692) and about two-thirds had ADD/ADHD (460/692). Almost half of the teens with physical health conditions had at least one of the 6 conditions for which activity limiting conditions were assessed (254/541) (Appendix Table A). Of the teens with any health condition, 34% had more than one (not shown).

Table 1:

School and Community Participation Outcomes and Characteristics of Sample by Presence of Adolescent Chronic Health Conditions (N=2,953)

	No chronic health conditions	Any developmental or behavioral or physical health condition(s)	Any developmental or behavioral health condition(s)	Any physical health condition(s)
	N=1,915	N=1,038	N=692	N=541
Monthly participation outcomes
Athletic or sports teams	0.665*	0.592	0.578	0.579
Group performance activities	0.359	0.369	0.341	0.388
Scouts or hobby clubs	0.245	0.224	0.228	0.222
School activities	0.338	0.303	0.290	0.322
Religious services	0.368	0.338	0.338	0.331
Volunteer activities	0.469*	0.394	0.387	0.394
Any extracurricular activities	0.885*	0.845	0.835	0.845
Teen characteristics
Male	0.475*	0.566	0.623	0.503
Age, mean in years (s.d.)	15.6 (0.8)	15.6 (0.7)	15.6 (0.7)	15.6 (0.7)
Maternal characteristics
Age, mean in years (s.d)	40.8 (6.1)	40.5 (5.9)	40.4 (5.9)	40.5 (5.9)
Race-ethnicity
Non-Hispanic white	0.190*	0.254	0.299	0.205
Non-Hispanic black	0.514*	0.482	0.448	0.510
Hispanic	0.256	0.235	0.223	0.251
Other race-ethnicity	0.041	0.029	0.030	0.033
Foreign born	0.159*	0.105	0.094	0.122
Education
< High school graduate	0.183	0.162	0.145	0.190
High school graduate	0.181	0.187	0.192	0.177
Some college	0.437	0.461	0.465	0.460
College graduate	0.199	0.191	0.198	0.172
Employed	0.727*	0.681	0.678	0.667
Married	0.415*	0.363	0.354	0.362
Household characteristics
# children, mean (s.d.)	2.6 (1.5)	2.7 (1.5)	2.6 (1.5)	2.7 (1.6)
Household income, % of federal poverty line
< 100%	0.286*	0.361	0.368	0.368
100-199%	0.302*	0.246	0.249	0.268
> 200%	0.412	0.393	0.383	0.364

Notes: All figures are proportions unless indicated otherwise. s.d. = standard deviation All time-varying characteristics were assessed when the child was 15 years old. See Appendix Table 1 for information about coding of specific health conditions. Asterisks indicate statistically significant differences between the 1,887 teens who had no health conditions and the 1,021 teens who had any developmental or physical health condition(s) using 2-tailed t tests for comparisons of means, with p = .05 as the threshold for statistical significance.

The vast majority of the teens (87%) participated monthly in at least one type of activity; about two-thirds participated in athletics or sports, about 44% participated in volunteer activities, about one-quarter participated in scouts or a hobby club, and about one-third participated in each of the following: performance activities, school activities and religious services (not shown). Based on t-tests for significant differences across groups, teens with any health condition had significantly lower rates of participation in sports (59 vs. 67%), volunteer activities (39 vs 47%), and any extracurricular activity (85 vs 89%) compared to teens with no health conditions (Table 1). They also had lower proportions of mothers who were foreign-born, employed, and married, and higher proportions of mothers who were poor and non-Hispanic white. Overall, teens with health conditions were more socioeconomically disadvantaged than those with no health conditions.

Unadjusted and adjusted logistic regression estimates of associations between teen health conditions (any developmental/behavioral health condition, any physical health condition, or both types of conditions, compared to no conditions) and participation in various types of activities are presented in Table 2, with the full adjusted regression results presented in Appendix Table B. Because the health condition variables are not mutually exclusive, the odds ratios for having both types of conditions indicate the extent to which having both types of conditions is associated with participation, above and beyond that of each type of condition.

Table 2:

Adjusted and Unadjusted Logistic Regression Estimates of Associations Between Adolescent Chronic Health Conditions and Monthly Participation in School and Community Activities (N = 2,953)

	Sports	Performing Arts	School Activities	Scouts or Hobby Clubs	Religious Services	Volunteer Activities	Any Activities
	OR [95% CI]	OR [95% CI]	OR [95% CI]	OR [95% CI]	OR [95% CI]	OR [95% CI]	OR [95% CI]
PANEL A Unadjusted
Any developmental or behavioral health condition(s)	0.781 [0.637 - 0.957]	0.952 [0.774 - 1.171]	0.776 [0.625 - 0.964]	0.897 [0.709 - 1.134]	0.910 [0.740 - 1.120]	0.737 [0.603 - 0.902]	0.712 [0.538 - 0.942]
Any physical health condition(s)	0.828 [0.653 - 1.049]	1.317 [1.044 - 1.663]	0.963 [0.755 - 1.228]	0.839 [0.636 - 1.107]	0.879 [0.690 - 1.119]	0.779 [0.617 - 0.983]	0.830 [0.592 - 1.164]
Both developmental or behavioral and physical health conditions	0.788 [0.523 - 1.187]	0.678 [0.445 - 1.035]	1.165 [0.754 - 1.801]	1.265 [0.783 - 2.045]	1.002 [0.653 - 1.538]	1.154 [0.763 - 1.745]	0.943 [0.545 - 1.633]
PANEL B Adjusted
Any developmental or behavioral health condition(s)	0.714 [0.577 - 0.883]	1.097 [0.884 - 1.361]	0.824 [0.659 - 1.031]	0.941 [0.737 - 1.200]	0.928 [0.748 - 1.151]	0.751 [0.611 - 0.924]	0.690 [0.516 - 0.921]
Any physical health condition(s)	0.830 [0.652 - 1.057]	1.323 [1.040 - 1.682]	1.001 [0.780 - 1.285]	0.860 [0.650 - 1.138]	0.895 [0.697 - 1.151]	0.786 [0.619 - 0.998]	0.837 [0.596 - 1.177]
Both developmental or behavioral and physical health conditions	0.857 [0.565 - 1.300]	0.672 [0.435 - 1.038]	1.135 [0.730 - 1.765]	1.322 [0.810 - 2.158]	1.053 [0.673 - 1.648]	1.177 [0.772 - 1.794]	1.068 [0.607 - 1.879]

Notes: Adjusted models control for all teen, maternal, and household characteristics in Table 1. See Appendix 2 for full regression results.

The unadjusted estimates indicate that having a physical health condition was negatively associated with the odds of monthly participation in volunteer activities (Table 2, Panel A), but positively associated with participation in performing arts. Having a chronic developmental/behavioral health condition was negatively associated with participation in sports (OR: 0.781; CI: 0.637–0.957), school activities (OR: 0.776; CI: 0.625–0.964), volunteer activities OR: 0.737; CI: 0.603–0.902), and any of these activities (OR: 0.712; CI: 0.538–0.942). Having both types of conditions had no independent associations with monthly participation in activities, above and beyond the associations of having each type of health condition. The adjusted associations are similar to the unadjusted associations (Table 2, Panel B), although having a developmental/behavioral condition was no longer significantly associated with participating in volunteer activities.

The odds of monthly participation in sports were significantly higher for males than females (OR: 1.927; CI: 1.646–2.254), but the odds of monthly participation in performing arts, school activities and scouting or a hobby club were significantly lower for males (Appendix Table B). Teens with non-Hispanic black mothers had significantly higher odds of monthly participation in sports. The odds of participation in various activities were generally higher for teens whose mothers had at least some college education (versus less than a high school education) and whose mothers were married (versus unmarried). The odds of monthly sports participation were significantly lower for teens with household incomes <200% of poverty (vs. above that threshold).

Supplementary analyses that included a measure of having more than one chronic health condition (of any type) in addition to the indicators for having any developmental/behavioral condition and having any physical health condition indicated that more than one condition was independently and negatively associated with participation in sports (OR: 0.579; CI: 0.421–0.798) but not the other activities (not shown). Other analyses that included measures of depression and ADD/ADHD, the two most common developmental/behavioral conditions, in addition to indicators for having any other developmental/behavioral conditions and for having any physical health conditions indicated that depression was associated with lower odds of participation in sports (OR: 0.572; CI: 0.443–0.739) and volunteering (OR: 0.765; CI: 0.591–0.990) but that ADD/ADHD was not independently associated with the odds of participation in any of the extracurricular activities considered (not shown). Estimates from models that used alternative cutoffs for participation in the various activities (weekly, any) were consistent with our main findings (Appendix Table C). Finally, analyses of subsamples of teens with mothers who were unmarried, low-educated, and low-income when they were born (characteristics associated with attrition) produced estimates very similar to those from our main models, suggesting that attrition did not substantially bias our results.

DISCUSSION

This study used population-based data from a national urban birth cohort study to investigate associations between chronic health conditions of 15-year-olds and participation in a range of school and community activities. Like previous studies, most of which focused on very specific types of disabilities, activities, and contexts, we found that children with potentially disabling chronic health conditions were less likely than children without such conditions to participate. However, the negative associations were largely limited to developmental/behavioral conditions, which included ADD/ADHD, autism, and depression, and pertained to sports and volunteer activities but not to performing arts, scouts, hobby clubs, or religious services. This finding is consistent with previous studies that found differences in both participation and types of activities across different types of activity-limiting conditions.^14,15 The findings were less consistent for physical health conditions, and for one activity (performing arts), we found a positive association that should be replicated and further explored before drawing conclusions. Overall, our findings are consistent with, but more specific than, those of Houtrow et al.¹² which used nationally representative data on children ages 12–17 and found that children with special health care needs with functional limitations were less likely than both children with special health care needs and no functional limitations and children with no special health care needs to participate in any organized activities (sports teams or lessons, clubs or organizations, or any other organized events or activities) and volunteering (community service or volunteer work at school, church, or community). We found similar negative associations between health conditions and participation among 15-year-olds, but these were largely confined to children with developmental/behavioral conditions and specific types of activities—namely, sports and volunteer activities.

Our findings of no significant associations between children’s health conditions and religious service attendance does not appear consistent with those of Whitehead,¹³ which used nationally representative data on children ages 0–17 and found that children with health conditions were less likely than their peers with no conditions to attend religious services in the past 12 months. However, our findings pertained to children age 15 and our estimates were in the same direction as those in Whitehead’s study; it is possible that the associations between health conditions and religious service attendance are stronger for children of younger ages.

The findings from this study have important implications for teens with disabling conditions, for pediatric professionals who monitor children’s well-being, and for schools. Regular physical activity is an essential component of a healthy lifestyle for all children,²⁰ and participation in organized sports is associated with increased overall levels of physical activity.²¹ Children with disabling conditions may particularly benefit from participation in organized sports that support inclusion and peer interactions,²² and early and sustained involvement in organized physical activity is positively associated with children’s emotional development.²³ Adolescents who engage in volunteering activities do better in school, have better self-esteem, and are less likely to engage in risky behaviors compared to their peers who do not volunteer.²⁴

Schools ideally should ensure that organized sports, service-learning, and other enriching activities are available for all students that would benefit, including those with disabling conditions. The Individuals with Disabilities Education Act mandates that school districts …"shall take steps to provide nonacademic and extracurricular services in such manner as necessary to afford children with disabilities an equal opportunity for participation in those services and activities,”²⁵ but does not specify the accommodations or modifications that should be provided. Similar, but broader, mandates are included in the U.S. Department of Education Office for Civil Rights Rehabilitation Act and the American with Disabilities Act. However, students with disabling conditions may not always want to participate in, or benefit from, activities oriented to typical students. IDEA does not require schools to provide activities and programs designed specifically for students with disability, such as “Best Buddies” or “Circle of Friends,” which can provide a club experience geared toward students with developmental disabilities and can also include (and enrich) typical students, or to refer students to community organizations that support inclusion, such as Special Olympics Unified Sports and Challenger Athletics. Schools can play an important role by referring families to such activities. Clinicians can educate families about the benefits of extracurricular activities, provide information about current laws and regulations requiring schools and other organizations to provide accommodations, and link families to programs in their community.

The strengths of our study include the use of a population-based birth cohort that allowed us to focus on a representative sample of children, all of whom were at the same important developmental stage; maternal reports of a detailed set of children’s health conditions; and children’s reports of their own participation in specific types of activities (which may be more accurate than mothers’ proxy reports for teens). Our study is also subject to certain limitations: The FFCWB study focused on urban, mostly non-marital, births and the results may not be generalizable to the broader population. The rate of chronic health conditions in our sample is somewhat lower than for the U.S. as a whole; to the extent that our lower rate reflects under-diagnosis of health conditions, the associations of interest would likely be underestimated. Attrition from the study was systematically associated with economic disadvantage and risk for poor health using low birthweight as a marker, which could potentially bias our estimates. Even with rich control variables, the observed associations between children’s health conditions and participation in activities could reflect unobserved factors. There is considerable heterogeneity in the developmental/behavioral conditions we grouped together, and only depression and ADD/ADHD could be considered separately. Finally, we could not ascertain reasons for the underrepresentation of teens with developmental/behavioral conditions in certain types of activities; e.g., those with such conditions may be less interested in activities, find them less enjoyable, or have fewer opportunities because of limited offerings or screening processes such as auditions or coach selection.

CONCLUSIONS

Chronic developmental/behavioral conditions of teens were negatively associated with school and community participation, particularly sports and volunteering, suggesting roles for clinicians and schools in promoting equal access to extracurricular activities to students with disabilities as mandated by the IDEA, as well as by the U.S. Department of Education Office for Civil Rights Rehabilitation Act and the American with Disabilities Act.

Implications:

This study finds that teens with a chronic developmental or behavioral health condition are less likely than teens with no chronic health conditions to participate in sports, volunteering, and any activity. Both schools and clinicians can play important roles in promoting participation in these activities.