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Comparison of Positive Youth Development for Youth With Chronic Conditions With Healthy Peers
Journal of Adolescent Health xxx (2016) 1e6
www.jahonline.org Original article
Comparison of Positive Youth Development for Youth With Chronic Conditions With Healthy Peers Gary R. Maslow, M.D., M.P.H. a, b, Sherika N. Hill, Ph.D., M.H.A. b, and McLean D. Pollock, Ph.D., M.S.W. b, * a b
Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina Department of Psychiatry and Behavioral Sciences, Duke University, Durham, North Carolina
Article history: Received February 22, 2016; Accepted August 3, 2016 Keywords: Adolescents; Young adults; Childhood-onset chronic condition; Chronic illness; Positive Youth Development
A B S T R A C T
Purpose: Adolescents with childhood-onset chronic condition (COCC) are at increased risk for physical and psychological problems. Despite being at greater risk and having to deal with traumatic experiences and uncertainty, most adolescents with COCC do well across many domains. The Positive Youth Development (PYD) perspective provides a framework for examining thriving in youth and has been useful in understanding positive outcomes for general populations of youth as well as at-risk youth. This study aimed to compare levels of PYD assets between youth with COCC and youth without illness. Methods: Participants with COCC were recruited from specialty pediatric clinics while healthy participants were recruited from a large pediatric primary care practice. Inclusion criteria for participants included being (1) English speaking, (2) no documented intellectual disability in electronic medical record, and (3) aged between 13 and 18 years during the recruitment period. Univariate and bivariate analyses on key variables were conducted for adolescents with and without COCC. Finally, we performed multivariable linear regressions for PYD and its subdomains. Results: There were no significant differences between overall PYD or any of the subdomains between the two groups. Multivariable linear regression models showed no statistically significant relationship between chronic condition status and PYD or the subdomains. Conclusions: The findings from this study support the application of the PYD perspective to this population of youth. The results of this study suggest that approaches shown to benefit healthy youth, could be used to promote positive outcomes for youth with COCC. Ó 2016 Society for Adolescent Health and Medicine. All rights reserved.
Approximately 15% of adolescents have some form of childhood-onset chronic condition (COCC), such as cancer, diabetes, seizures, or sickle cell disease [1,2]. This group of Conflicts of Interest: The authors have no conflicts of interest or financial disclosures to report. * Address correspondence to: McLean D. Pollock, Ph.D., M.S.W., Center for Developmental Epidemiology, Duke University, Box 3454 DUMC, Durham, NC 27710. E-mail address: [email protected] (M.D. Pollock). 1054-139X/Ó 2016 Society for Adolescent Health and Medicine. All rights reserved. http://dx.doi.org/10.1016/j.jadohealth.2016.08.004
IMPLICATIONS AND CONTRIBUTION
While most youth with childhood-onset chronic condition do thrive, they are at increased risk of psychological distress and are known to struggle with educational and vocational transitions. The results of this study suggest that approaches shown to benefit healthy youth could be used to promote positive outcomes for youth with childhood-onset chronic condition.
adolescents is at increased risk for physical and psychological problems, ranging from symptoms such as pain and fatigue to a twofold to threefold increased risk of depression [3,4]. In addition, adolescents with COCC sometimes struggle with their peer relations, and as they become adults they are at greater risk of low educational attainment and unemployment [5]. Still, even though they are at greater risk and may have to deal with traumatic experiences and uncertainty, the majority of adolescents with COCC do well across many domains. For example, high
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school graduation rates and marriage rates for young adults with and without chronic illnesses are equivalent [6]. The notion of adaptation or adjustment to chronic illness is often presented as a negative concept. Doing well with an illness is defined by not having depression or some other major problem. However, recently the notion of adaptation to chronic illness has taken on a more positive perspective, particularly in studies examining adults with cancer, HIV, and myocardial infarction [7]. Developmental science models offer an opportunity to extend this perspective to youth with chronic illness. The Positive Youth Development (PYD) perspective is a developmental science model that focuses on the developmental strengths of youth and how they align with growth promoting resources in their environment [8]. The PYD perspective provides a framework for examining thriving in youth and has been useful in understanding and promoting positive outcomes for at-risk youth. The Five Cs model of PYD postulates that youth with greater developmental assets including character, confidence, competence, connection, and compassion will have fewer maladaptive or risk outcomes and greater contribution in their communities [9e11]. This model has been empirically validated through a large longitudinal study of youth from 5th through 12th grades which found that youth with higher scores on a measure of these five PYD assets had lower rates of depression and at-risk behavior and higher rates of contribution to their communities [12]. Although interventions based on PYD models have been used to promote positive developmental outcomes for youth [11], there is limited evidence of the PYD approach being applied to program development for youth with COCC. A recent systematic review identified only three, community-based programs for youth with COCC that utilized major principles of the PYD approach [13]. Yet, thousands of youth with COCC participate in illness-specific programs each year such as summer camps [14]. To promote the application of the PYD perspective in future programming and interventions for youth with COCC, a better understanding of PYD among youth with COCC is needed. According to the model by Lerner et al. [15], PYD assets of youth are shaped by the ecological context surrounding an individual, as well as by internal factors such as school connection or hope for the future. In this model, ecological and individual characteristics are mutually influential such that certain environmental factors influence the development of individual characteristics of youth and vice versa. Chronic illness in childhood can affect a child’s environment by potentially altering their ability to participate in critical activities such as school or by changing the constellation of important adults with whom they interact. These changes could have a positive or negative effect. For example, many youth with COCC identify health care providers such as doctors, nurses, or physical therapists as important adults (G. Maslow, J. Lewis, C. Barrington, E. Fisher, unpublished data, 2016), which may be related to their experiences with receiving health care. To better appreciate the differences in individual characteristics that are shaped by their different experiences and environments, it is important to compare PYD between youth with COCC and those without as a first step. To this end, this study aimed to apply the Five Cs model of PYD to a sample of youth with COCC and compare their levels of PYD assets to youth without illness. Based on studies that have found that youth with COCC are more isolated or have lower selfesteem than healthy peers [16], we hypothesized that youth with COCC would have lower levels of confidence, competence,
and connection. We also hypothesized that youth with COCC would have higher levels of character and compassion based on anecdotal reports of youth with COCC often pursuing careers in helping professions. Finally, we hypothesized that youth with more physical limitations would have lower PYD scores. Methods Sample This study used a noncategorical approach to define and recruit youth with COCC. Previous psychosocial studies have found that distinguishing between youth with COCC by specific biological illnesses is an arbitrary delineation that would be better understood by accounting for the burden of the illness such as chronicity or impairment [17,18]. Therefore, this study utilized a noncategorical approach to examine the relationship between COCC and PYD. Study participants were recruited from Duke University clinics in Durham, North Carolina, between August 2013 and March 2015. Healthy participants were identified from system-wide pediatric primary care practices, and participants with COCCs were recruited from specialty pediatric clinics including cardiology, cystic fibrosis, endocrinology, gastroenterology, hematology, muscular dystrophy, neurology, oncology, and rheumatology. Recruitment targets were set for each specialty clinic to ensure that there would be a variety of conditions represented among youth with COCC in sufficient numbers to allow for subgroup analyses. As a result, the clinical, convenience sample consisted of nine conditions (as listed in Table 1) that are known to cause impairment or lifestyle limitations; thereby, necessitating routine clinical monitoring and treatment unlike chronic conditions such as asthma and obesity. Of the 465 subjects enrolled in the study, 51% with chronic conditions, 348 initiated surveys. Among these participants, 325 (95%) had complete data on surveys of interest to be included in the final analytical data set. Procedure A trained clinical research coordinator approached subjects who met study inclusion criteria during their scheduled clinical appointments. Inclusion criteria for participants included being between 13 and 18 years of age during the recruitment period and being able to speak and read English. Potential subjects were excluded if they had an intellectual disability documented in their electronic medical record or a severe learning disability as reported by the clinician or parent that would prohibit them from being able to independently complete an online survey. The main additional exclusion criterion for healthy controls was that they could not have a documented COCC in their medical chart problem list or a new diagnosis during their clinical appointment. To ensure compliance, a second medical chart review was conducted of each healthy subject prior to data analysis to confirm that they did not have any of the 141 International Classification of Disease, Ninth Edition codes related to childhood-onset neuromuscular conditions, cardiac conditions, respiratory conditions (not including asthma), renal conditions, gastrointestinal conditions, hemetology conditions (not including sickle cell trait), congenital/genetic conditions, metabolic conditions (not including obesity), and malignant conditions. The complete list of International Classification of Disease, Ninth Edition can be obtained by contacting the corresponding author.
G.R. Maslow et al. / Journal of Adolescent Health xxx (2016) 1e6 Table 1 Sample demographics by chronic condition status Overall sample N ¼ 325
Chronic condition N ¼ 163
Comparison group N ¼ 162
Mean (SD)/percentages (n) Age (years) Sex Female Male Race/ethnicity White*** Black* Hispanic Other* Parents married*** Household crowding (SES) Number of household members Number of bedrooms Residence*** Durham Raleigh/Cary Chapel Hill/Carrboro Greensboro Other Chronic illness Cancer survivor Congenital heart disease Cystic fibrosis Diabetes Epilepsy Inflammatory bowel disease Juvenile arthritis Muscular dystrophy Sickle cell disease
15.35 (1.70)
15.31 (1.70)
15.39 (1.70)
56.3 (183) 43.7 (142)
53.4 (87) 46.6 (76)
59.3 (96) 40.7 (66)
48.9 37.9 5.5 7.7 51.4 1.24 4.10
58.9 31.9 4.9 4.3 61.4 1.22 4.08
38.9 43.8 6.2 11.1 41.4 1.26 4.13
(159) (123) (18) (25) (167) (.53) (1.43)
3.53 (1.02) 42.5 5.5 5.5 1.9 44.6 50.2
(138) (18) (19) (6) (145) (163)
(96) (52) (8) (7) (100) (.52) (1.36)
3.55 (.94) 14.1 9.8 2.5 3.7 69.5 d 8.6 10.4
(23) (16) (4) (6) (114)
9.2 16.0 13.5 14.1
(15) (26) (22) (23)
(63) (71) (10) (18) (67) (.53) (1.50)
3.51 (1.09) 71.0 1.2 8.6 d 19.1 d
(115) (2) (14) (31)
(14) (17)
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higher levels of that asset [22]. Previous studies of younger and older adolescents have shown that the Five Cs measure is a valid framework for understanding PYD and has strong internal consistency overall and across the five subdomains [15,21,23]. “Character” is defined as having respect for both cultural and societal rules and holding standards for correct behaviors, morality, and integrity; “caring” is recognized as having a sense of sympathy and empathy for others; “competence” is identified by having skills and abilities in social, academic, cognitive, and vocational areas as well as having a positive view of those abilities or skills; “confidence” is an internal sense of positive self-worth and self-efficacy; and “connection” is defined as having positive bonds with peers, family, school, and community in which both parties contribute to the relationship [15,24]. Main independent variabledchronic condition. We used a noncategorical definition for having a chronic condition (yes/no) which included the following: juvenile idiopathic arthritis, systemic lupus erythematous, congenital heart disease, cystic fibrosis, diabetes, epilepsy, cancer survivor, inflammatory bowel disease, sickle cell disease, and muscular dystrophy. A noncategorical definition for chronic conditions is appropriate in examining the psychosocial outcomes of COCCs as there are similarities across conditions [18].
Four misclassified participants were retrospectively identified and dropped from the study. Once consented, each adolescent completed a selfadministered online survey. Subjects were paid for their participation. Study data were collected and managed using Research Electronic Data Capture tools hosted at Duke University [19]. Research Electronic Data Capture is a secure, Web-based application designed to support data capture for research studies, providing: (1) an intuitive interface for validated data entry; (2) audit trails for tracking data manipulation and export procedures; (3) automated export procedures for seamless data downloads to common statistical packages; and (4) procedures for importing data from external sources. The study was approved by the Duke Institutional Review Board.
Other independent variables. Socioeconomic status (SES) was calculated in terms of household crowding (number of household members/number of bedrooms) given that adolescents may be inaccurate reporters of household income, parental highest education level, or parents’ occupation. Larger values correspond to greater crowding. Studies have shown that an inverse relationship exists between household crowding and SES [25]. In our sample, household crowding was significantly correlated with parent reported highest education level. Finally, the family structure variable, having married parents (yes/no) served as an indicator of social support. Other demographic covariates of interest included age (in years), male sex (yes/no), race/ethnicity (white referent group, black, Hispanic, and other), and residence based on distance from Duke University clinics ([Durham referent group where Duke University clinics are located], Chapel Hill [approximately 10 miles from the clinics], Raleigh/Cary [approximately 25 miles from the clinics], Greensboro [approximately 50 miles from the clinics], and others [over 50 miles from the clinics]). Residence was important to include because subjects in our sample drove as far as 300 miles to see a Duke pediatric specialist. To examine the relationship between functional disability and PYD, we used the physical health-related quality of life (QoL) subscale of the Pediatric Quality of Life Survey [26] which uses a 0e100 (minimumemaximum) point scale. The physical domain of this survey corresponds to limitations in daily activities.
Measures
Approach
Dependent variabledPYD. The primary measure is PYD as calculated by the PYD survey short form developed by Lerner and validated through the 4-H Study of PYD [15,20,21]. The scale includes 34 items and provides a global measure of PYD and five specific subdomains including character, caring (compassion), confidence, competence, and connection; scores for each domain are generated on a 0e100 scale, with a higher score indicating
First, in order to confirm that the structure of the PYD scale was maintained in our sample of youth with COCC, we performed a confirmatory factor analysis using structural equation modeling [27]. We examined PYD as a latent variable of character, caring, confidence, competence, and connectedness factors, allowing the error terms for character and caring to covary as well as the error terms for confidence and competence.
13.5 (22) 4.3 (7) 10.4 (17)
* p < .05, ***p < .001. SD ¼ standard deviation; SES ¼ socioeconomic status.
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Table 2 Positive Youth Development scores: Overall and five subdomains for entire sample and by COCC status (n ¼ 325) Sample
Chronic condition
Comparison group
72.12 (12.68)
71.53 (12.75)
72.72 (12.62)
73.87 81.78 72.47 71.33 61.47
74.29 82.10 73.64 69.06 59.12
73.45 81.45 71.30 73.62 63.83
Mean (SD) Positive Youth Development Character Caring Connection Confidence Competence
(15.40) (19.51) (17.00) (23.49) (22.73)
(14.84) (16.48) (16.47) (23.96) (23.96)
(15.97) (22.18) (17.48) (22.86) (21.24)
COCC ¼ childhood-onset chronic condition; SD ¼ standard deviation.
We then summarized the means and frequencies of key variables and conducted bivariate analyses for adolescents with and without chronic conditions. t tests were used for continuous variables and chi-square tests for categorical variables. As a final step, multivariable linear regressions were performed. The correlation between PYD and the physical health-related QoL domain was examined using Pearson correlations. All data were analyzed using STATA 14 (StataCorp LP, College Station, TX).
Results The sample consisted of 325 youth, and just over half of the sample were youth with COCC. The average age of the sample was 15 years, over half were female (56.3%), and nearly half were white (48.9%) (Table 1). The group of youth with COCC included youth with nine conditions as indicated in Table 1. The sample of adolescents with COCC was significantly different from the youth without COCC, in that the majority were white (58.9%), had a higher proportion of married parents (61.4%), and were less likely to live in Durham. There were no differences of SES as indicated by household crowding.
Table 3 Adjusted linear regression model coefficients for Positive Youth Development Positive Youth Development
Coefficient
95% Confidence interval
Chronic condition Male Age Race (reference: white) Black Hispanic Other City (reference: Durham) Raleigh/Cary Chapel Hill/Carrboro Greensboro Other Household crowding Parents married*** Intercept*** Observations F (13, 311) Probability >F R-squared Adjusted R-squared Root MSE
1.44 .27 .31
4.98 2.51 1.12
2.10 3.05 .50
1.97 5.88 4.71
1.37 12.31 10.09
5.31 .55 .67
13.03 10.60 9.76 5.30 2.74 2.42 62.06
.27 2.03 11.51 2.22 2.67 8.46 89.80
6.38 4.29 .88 1.54 .03 5.44 75.93 325 2.30 .0082 .0812 .0459 12.387
***
p < .001.
Physical QoL and PYD Mean physical QoL was 76.4, with the group with COCC having a significantly lower mean physical QoL score of 72.0 versus 80.9 for the comparison group. Physical QoL across the sample was correlated with overall PYD (p < .001), connection (p < .01), confidence (p < .001), and competence (p < .001) but not with character or caring. While the correlations between PYD and QoL ranged from weak to moderate, the strongest correlation was between physical QoL and competence (.4) (Table 4). The physical functioning subdomain of QoL was moderately correlated with overall PYD, confidence, and connection but not with character or caring. There were similar patterns for both youth with COCC and youth without.
Confirmation of PYD measure fit with data Discussion Confirmatory factor analysis showed that there was a very good to excellent close fit of the PYD latent variable and Five Cs (root mean square error of approximation ¼ .023, pclose >.05) among youth with COCC. This indicates that the PYD measure and the Five Cs constructs are clearly delineated in our data. This confirms that the same structure of the PYD measured by Lerner in the general population is also applicable to youth with COCC in this sample.
Comparisons of PYD between groups There was no significant difference between overall PYD or any of the individual PYD subdomains between the two groups. Youth with and without COCC had similar scores across all domains (Table 2). Adjusted linear regressions showed that there was not a statistically significant relationship between chronic condition status and PYD (Table 3) or character, caring, connection, confidence, and competence (results not shown). The only variable in the model found to be significantly associated with PYD was “married parents” which had significantly higher overall PYD scores (p < .01).
This study is among the first to compare PYD between youth with and without childhood-onset chronic illness. Given the limited empirical evidence on the development of the growing population of adolescents with COCC, our goal was to apply the PYD approach to youth with COCC. Confirmatory factor analysis revealed that the same structure of PYD and subdomains of character, caring, confidence, connection, and confidence as
Table 4 Correlation table between PYD (and subdomains) and physical quality of life Overall sample
Chronic condition
Comparison group
Correlation coefficient (p value) Positive Youth Development (PYD) Character Caring Connection Confidence Competence
.3027 (.0000)
.3189 (.0000)
.0604 .0258 .1586 .2627 .4040
.0403 .0920 .1822 .2725 .3609
(.2858) (.6504) (.0048) (.0000) (.0000)
(.6128) (.2490) (.0211) (.0005) (.0000)
.2958 (.0002) .1177 .0253 .1894 .2224 .4566
(.1459) (.7563) (.0186) (.0057) (.0000)
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measured by Lerner in the general population is also applicable to youth with COCC in this sample [28]. Another key aim of this study was to compare PYD between youth with COCC and those without. The sample was constructed specifically to identify youth with a range of conditions, all of which can have significant impairment and are associated with psychological vulnerability [29]. We hypothesized that youth with COCC would have lower scores on the confidence, competence, and connection subdomains but higher scores on the character and caring domains. Yet, we did not find a significant difference in overall PYD or any of the Five Cs between youth with COCC and youth without COCC. Moreover, the observed PYD and subdomain scores from this study fell within the range of PYD scores observed in the 4-H study for youth in grades 5e12 that were on an optimal longitudinal trajectory (trajectory 2) for positive outcomes, including making contributions to their communities and having higher academic competence [28]. In examining the relationship between physical impairment, as indicated by health-related QoL, character and compassion were the only subdomains of PYD that were not correlated with physical health-related QoL. Accordingly, it may be that the experience of COCC alone is not sufficient to affect PYD. Instead, the development of functional physical limitations is necessary to impact PYD or at least subdomains of confidence, competence, and connections given the correlations with physical healthrelated QoL. Specifically, lower physical health-related QoL was correlated with lower PYD on those domains. As one of the first studies on this topic, there are several limitations that should be considered. First, the study was limited by its observational, cross-sectional design and small, clinical convenience sample. These factors could have resulted in systematic biases between study participants who chose to enroll in the study and those who did not. Also, there could be differences between recruited participants who completed the online survey and those who did not. Second, the multivariable model does not account for differences in disease severity among the COCC group. In addition, the model does not adjust for healthy peers who may have acute or persistent conditions that require intensive or repetitive medical care such as infections, fractures, dermatology (acne), asthma, or obesity. However, it is important to note that analyses of physical QoL increased our confidence that there was greater variation between the groups of youth with COCC and without COCC rather than within the COCC group. Despite these shortcomings, this study provides an important first step toward examining youth with COCC from the PYD perspective. The evaluation of PYD among adolescents with COCC is critical given that prior research has identified this group as a vulnerable population that needs targeted attention to promote development. It is important to recognize the strengths of youth with COCC and to build on those strengths using the approaches that are commonly used to promote PYD among youth in general. Although the findings were contrary to our hypotheses, they are consistent with conclusions drawn from other studies that youth with COCC do well across a wide range of domains [6]. The findings from this study show no differences in PYD between youth with and without COCC and thus support the application of the PYD perspective, which have been shown to be beneficial for healthy youth, to youth with COCC. The PYD perspective has been used to develop and implement
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interventions for youth with a range of problems and promote positive outcomes, including adolescent sexual health [30], HIV-related risk behaviors [31], and academic engagement and achievement [32,33]. The results of this study suggest that similar approaches could be used to promote positive outcomes for youth with COCC. While most youth with COCC do thrive, they are at increased risk of psychological distress and are known to struggle with educational and vocational transitions. PYD-informed interventions could be used to address these problems. Given the cross-sectional nature of this study, future research is needed to better understand the long-term impact of PYD assets for youth with COCC. Additionally, longitudinal research is needed within the group of youth with COCC to assess the relationship between PYD and positive outcomes and to determine which factors are associated with the development of PYD for youth with COCC. Previous research has shown that a strong connection with school and hopeful future expectations are factors that could be examined, as they are known to be associated with higher PYD for healthy youth [34]. Finally, future research should examine the role of PYD programs, especially those with mentoring components, in ensuring the success of youth with COCC. Acknowledgments The authors thank Katie Delgado and Amanda Layne Walker for their work on this project, as well as the Duke Healthcare System patients and their families who participated in this study. Funding Sources All phases of this study were supported by the John Templeton Foundation (grant #40033), but the funder had no involvement in the study design, data collection, analysis or interpretation, writing of the report, or the decision to submit this manuscript for publication. References [1] van Dyck PC, Kogan MD, McPherson MG, et al. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med 2004;158:884e90. [2] Newacheck PW, Strickland B, Shonkoff JP, et al. An epidemiologic profile of children with special health care needs. Pediatrics 1998;102:117e23. [3] Stewart SM, Rao U, White P. Depression and diabetes in children and adolescents. Curr Opin Pediatr 2005;17:626e31. [4] Benton TD, Ifeagwu JA, Smith-Whitley K. Anxiety and depression in children and adolescents with sickle cell disease. Curr Psychiatry Rep 2007;9: 114e21. [5] Maslow GR, Haydon AA, Ford CA, Halpern CT. Young adult outcomes of children growing up with chronic illness: An analysis of the national longitudinal study of adolescent health. Arch Pediatr Adolesc Med 2011;165: 256e61. [6] Maslow GR, Haydon A, McRee A, et al. Growing up with a chronic illness: Social success, educational/vocational distress. J Adolesc Health 2011;49: 206e12. [7] Barskova T, Oesterreich R. Post-traumatic growth in people living with a serious medical condition and its relations to physical and mental health: A systematic review. Disabil Rehabil 2009;31:1709e33. [8] Lerner RM, Abo-Zena MM, Bebiroglu N, et al. Positive youth development: Contemporary theoretical perspectives. In: DiClemente RJ, Santelli JS, Crosby RA, editors. Adolescent Health: Understanding and Preventing Risk Behaviors. San Francisco, Calif.: Jossey-Bass; 2009. p.115e128. Available at: http://search.lib.unc.edu?R¼UNCb5994191; Full text available via the UNC-Chapel Hill Libraries (http://libproxy.lib.unc.edu/login?url¼http:// site.ebrary.com/lib/uncch/Doc?id¼10308110). Accessed June 10, 2015.
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www.jahonline.org Original article
Comparison of Positive Youth Development for Youth With Chronic Conditions With Healthy Peers Gary R. Maslow, M.D., M.P.H. a, b, Sherika N. Hill, Ph.D., M.H.A. b, and McLean D. Pollock, Ph.D., M.S.W. b, * a b
Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina Department of Psychiatry and Behavioral Sciences, Duke University, Durham, North Carolina
Article history: Received February 22, 2016; Accepted August 3, 2016 Keywords: Adolescents; Young adults; Childhood-onset chronic condition; Chronic illness; Positive Youth Development
A B S T R A C T
Purpose: Adolescents with childhood-onset chronic condition (COCC) are at increased risk for physical and psychological problems. Despite being at greater risk and having to deal with traumatic experiences and uncertainty, most adolescents with COCC do well across many domains. The Positive Youth Development (PYD) perspective provides a framework for examining thriving in youth and has been useful in understanding positive outcomes for general populations of youth as well as at-risk youth. This study aimed to compare levels of PYD assets between youth with COCC and youth without illness. Methods: Participants with COCC were recruited from specialty pediatric clinics while healthy participants were recruited from a large pediatric primary care practice. Inclusion criteria for participants included being (1) English speaking, (2) no documented intellectual disability in electronic medical record, and (3) aged between 13 and 18 years during the recruitment period. Univariate and bivariate analyses on key variables were conducted for adolescents with and without COCC. Finally, we performed multivariable linear regressions for PYD and its subdomains. Results: There were no significant differences between overall PYD or any of the subdomains between the two groups. Multivariable linear regression models showed no statistically significant relationship between chronic condition status and PYD or the subdomains. Conclusions: The findings from this study support the application of the PYD perspective to this population of youth. The results of this study suggest that approaches shown to benefit healthy youth, could be used to promote positive outcomes for youth with COCC. Ó 2016 Society for Adolescent Health and Medicine. All rights reserved.
Approximately 15% of adolescents have some form of childhood-onset chronic condition (COCC), such as cancer, diabetes, seizures, or sickle cell disease [1,2]. This group of Conflicts of Interest: The authors have no conflicts of interest or financial disclosures to report. * Address correspondence to: McLean D. Pollock, Ph.D., M.S.W., Center for Developmental Epidemiology, Duke University, Box 3454 DUMC, Durham, NC 27710. E-mail address: [email protected] (M.D. Pollock). 1054-139X/Ó 2016 Society for Adolescent Health and Medicine. All rights reserved. http://dx.doi.org/10.1016/j.jadohealth.2016.08.004
IMPLICATIONS AND CONTRIBUTION
While most youth with childhood-onset chronic condition do thrive, they are at increased risk of psychological distress and are known to struggle with educational and vocational transitions. The results of this study suggest that approaches shown to benefit healthy youth could be used to promote positive outcomes for youth with childhood-onset chronic condition.
adolescents is at increased risk for physical and psychological problems, ranging from symptoms such as pain and fatigue to a twofold to threefold increased risk of depression [3,4]. In addition, adolescents with COCC sometimes struggle with their peer relations, and as they become adults they are at greater risk of low educational attainment and unemployment [5]. Still, even though they are at greater risk and may have to deal with traumatic experiences and uncertainty, the majority of adolescents with COCC do well across many domains. For example, high
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school graduation rates and marriage rates for young adults with and without chronic illnesses are equivalent [6]. The notion of adaptation or adjustment to chronic illness is often presented as a negative concept. Doing well with an illness is defined by not having depression or some other major problem. However, recently the notion of adaptation to chronic illness has taken on a more positive perspective, particularly in studies examining adults with cancer, HIV, and myocardial infarction [7]. Developmental science models offer an opportunity to extend this perspective to youth with chronic illness. The Positive Youth Development (PYD) perspective is a developmental science model that focuses on the developmental strengths of youth and how they align with growth promoting resources in their environment [8]. The PYD perspective provides a framework for examining thriving in youth and has been useful in understanding and promoting positive outcomes for at-risk youth. The Five Cs model of PYD postulates that youth with greater developmental assets including character, confidence, competence, connection, and compassion will have fewer maladaptive or risk outcomes and greater contribution in their communities [9e11]. This model has been empirically validated through a large longitudinal study of youth from 5th through 12th grades which found that youth with higher scores on a measure of these five PYD assets had lower rates of depression and at-risk behavior and higher rates of contribution to their communities [12]. Although interventions based on PYD models have been used to promote positive developmental outcomes for youth [11], there is limited evidence of the PYD approach being applied to program development for youth with COCC. A recent systematic review identified only three, community-based programs for youth with COCC that utilized major principles of the PYD approach [13]. Yet, thousands of youth with COCC participate in illness-specific programs each year such as summer camps [14]. To promote the application of the PYD perspective in future programming and interventions for youth with COCC, a better understanding of PYD among youth with COCC is needed. According to the model by Lerner et al. [15], PYD assets of youth are shaped by the ecological context surrounding an individual, as well as by internal factors such as school connection or hope for the future. In this model, ecological and individual characteristics are mutually influential such that certain environmental factors influence the development of individual characteristics of youth and vice versa. Chronic illness in childhood can affect a child’s environment by potentially altering their ability to participate in critical activities such as school or by changing the constellation of important adults with whom they interact. These changes could have a positive or negative effect. For example, many youth with COCC identify health care providers such as doctors, nurses, or physical therapists as important adults (G. Maslow, J. Lewis, C. Barrington, E. Fisher, unpublished data, 2016), which may be related to their experiences with receiving health care. To better appreciate the differences in individual characteristics that are shaped by their different experiences and environments, it is important to compare PYD between youth with COCC and those without as a first step. To this end, this study aimed to apply the Five Cs model of PYD to a sample of youth with COCC and compare their levels of PYD assets to youth without illness. Based on studies that have found that youth with COCC are more isolated or have lower selfesteem than healthy peers [16], we hypothesized that youth with COCC would have lower levels of confidence, competence,
and connection. We also hypothesized that youth with COCC would have higher levels of character and compassion based on anecdotal reports of youth with COCC often pursuing careers in helping professions. Finally, we hypothesized that youth with more physical limitations would have lower PYD scores. Methods Sample This study used a noncategorical approach to define and recruit youth with COCC. Previous psychosocial studies have found that distinguishing between youth with COCC by specific biological illnesses is an arbitrary delineation that would be better understood by accounting for the burden of the illness such as chronicity or impairment [17,18]. Therefore, this study utilized a noncategorical approach to examine the relationship between COCC and PYD. Study participants were recruited from Duke University clinics in Durham, North Carolina, between August 2013 and March 2015. Healthy participants were identified from system-wide pediatric primary care practices, and participants with COCCs were recruited from specialty pediatric clinics including cardiology, cystic fibrosis, endocrinology, gastroenterology, hematology, muscular dystrophy, neurology, oncology, and rheumatology. Recruitment targets were set for each specialty clinic to ensure that there would be a variety of conditions represented among youth with COCC in sufficient numbers to allow for subgroup analyses. As a result, the clinical, convenience sample consisted of nine conditions (as listed in Table 1) that are known to cause impairment or lifestyle limitations; thereby, necessitating routine clinical monitoring and treatment unlike chronic conditions such as asthma and obesity. Of the 465 subjects enrolled in the study, 51% with chronic conditions, 348 initiated surveys. Among these participants, 325 (95%) had complete data on surveys of interest to be included in the final analytical data set. Procedure A trained clinical research coordinator approached subjects who met study inclusion criteria during their scheduled clinical appointments. Inclusion criteria for participants included being between 13 and 18 years of age during the recruitment period and being able to speak and read English. Potential subjects were excluded if they had an intellectual disability documented in their electronic medical record or a severe learning disability as reported by the clinician or parent that would prohibit them from being able to independently complete an online survey. The main additional exclusion criterion for healthy controls was that they could not have a documented COCC in their medical chart problem list or a new diagnosis during their clinical appointment. To ensure compliance, a second medical chart review was conducted of each healthy subject prior to data analysis to confirm that they did not have any of the 141 International Classification of Disease, Ninth Edition codes related to childhood-onset neuromuscular conditions, cardiac conditions, respiratory conditions (not including asthma), renal conditions, gastrointestinal conditions, hemetology conditions (not including sickle cell trait), congenital/genetic conditions, metabolic conditions (not including obesity), and malignant conditions. The complete list of International Classification of Disease, Ninth Edition can be obtained by contacting the corresponding author.
G.R. Maslow et al. / Journal of Adolescent Health xxx (2016) 1e6 Table 1 Sample demographics by chronic condition status Overall sample N ¼ 325
Chronic condition N ¼ 163
Comparison group N ¼ 162
Mean (SD)/percentages (n) Age (years) Sex Female Male Race/ethnicity White*** Black* Hispanic Other* Parents married*** Household crowding (SES) Number of household members Number of bedrooms Residence*** Durham Raleigh/Cary Chapel Hill/Carrboro Greensboro Other Chronic illness Cancer survivor Congenital heart disease Cystic fibrosis Diabetes Epilepsy Inflammatory bowel disease Juvenile arthritis Muscular dystrophy Sickle cell disease
15.35 (1.70)
15.31 (1.70)
15.39 (1.70)
56.3 (183) 43.7 (142)
53.4 (87) 46.6 (76)
59.3 (96) 40.7 (66)
48.9 37.9 5.5 7.7 51.4 1.24 4.10
58.9 31.9 4.9 4.3 61.4 1.22 4.08
38.9 43.8 6.2 11.1 41.4 1.26 4.13
(159) (123) (18) (25) (167) (.53) (1.43)
3.53 (1.02) 42.5 5.5 5.5 1.9 44.6 50.2
(138) (18) (19) (6) (145) (163)
(96) (52) (8) (7) (100) (.52) (1.36)
3.55 (.94) 14.1 9.8 2.5 3.7 69.5 d 8.6 10.4
(23) (16) (4) (6) (114)
9.2 16.0 13.5 14.1
(15) (26) (22) (23)
(63) (71) (10) (18) (67) (.53) (1.50)
3.51 (1.09) 71.0 1.2 8.6 d 19.1 d
(115) (2) (14) (31)
(14) (17)
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higher levels of that asset [22]. Previous studies of younger and older adolescents have shown that the Five Cs measure is a valid framework for understanding PYD and has strong internal consistency overall and across the five subdomains [15,21,23]. “Character” is defined as having respect for both cultural and societal rules and holding standards for correct behaviors, morality, and integrity; “caring” is recognized as having a sense of sympathy and empathy for others; “competence” is identified by having skills and abilities in social, academic, cognitive, and vocational areas as well as having a positive view of those abilities or skills; “confidence” is an internal sense of positive self-worth and self-efficacy; and “connection” is defined as having positive bonds with peers, family, school, and community in which both parties contribute to the relationship [15,24]. Main independent variabledchronic condition. We used a noncategorical definition for having a chronic condition (yes/no) which included the following: juvenile idiopathic arthritis, systemic lupus erythematous, congenital heart disease, cystic fibrosis, diabetes, epilepsy, cancer survivor, inflammatory bowel disease, sickle cell disease, and muscular dystrophy. A noncategorical definition for chronic conditions is appropriate in examining the psychosocial outcomes of COCCs as there are similarities across conditions [18].
Four misclassified participants were retrospectively identified and dropped from the study. Once consented, each adolescent completed a selfadministered online survey. Subjects were paid for their participation. Study data were collected and managed using Research Electronic Data Capture tools hosted at Duke University [19]. Research Electronic Data Capture is a secure, Web-based application designed to support data capture for research studies, providing: (1) an intuitive interface for validated data entry; (2) audit trails for tracking data manipulation and export procedures; (3) automated export procedures for seamless data downloads to common statistical packages; and (4) procedures for importing data from external sources. The study was approved by the Duke Institutional Review Board.
Other independent variables. Socioeconomic status (SES) was calculated in terms of household crowding (number of household members/number of bedrooms) given that adolescents may be inaccurate reporters of household income, parental highest education level, or parents’ occupation. Larger values correspond to greater crowding. Studies have shown that an inverse relationship exists between household crowding and SES [25]. In our sample, household crowding was significantly correlated with parent reported highest education level. Finally, the family structure variable, having married parents (yes/no) served as an indicator of social support. Other demographic covariates of interest included age (in years), male sex (yes/no), race/ethnicity (white referent group, black, Hispanic, and other), and residence based on distance from Duke University clinics ([Durham referent group where Duke University clinics are located], Chapel Hill [approximately 10 miles from the clinics], Raleigh/Cary [approximately 25 miles from the clinics], Greensboro [approximately 50 miles from the clinics], and others [over 50 miles from the clinics]). Residence was important to include because subjects in our sample drove as far as 300 miles to see a Duke pediatric specialist. To examine the relationship between functional disability and PYD, we used the physical health-related quality of life (QoL) subscale of the Pediatric Quality of Life Survey [26] which uses a 0e100 (minimumemaximum) point scale. The physical domain of this survey corresponds to limitations in daily activities.
Measures
Approach
Dependent variabledPYD. The primary measure is PYD as calculated by the PYD survey short form developed by Lerner and validated through the 4-H Study of PYD [15,20,21]. The scale includes 34 items and provides a global measure of PYD and five specific subdomains including character, caring (compassion), confidence, competence, and connection; scores for each domain are generated on a 0e100 scale, with a higher score indicating
First, in order to confirm that the structure of the PYD scale was maintained in our sample of youth with COCC, we performed a confirmatory factor analysis using structural equation modeling [27]. We examined PYD as a latent variable of character, caring, confidence, competence, and connectedness factors, allowing the error terms for character and caring to covary as well as the error terms for confidence and competence.
13.5 (22) 4.3 (7) 10.4 (17)
* p < .05, ***p < .001. SD ¼ standard deviation; SES ¼ socioeconomic status.
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Table 2 Positive Youth Development scores: Overall and five subdomains for entire sample and by COCC status (n ¼ 325) Sample
Chronic condition
Comparison group
72.12 (12.68)
71.53 (12.75)
72.72 (12.62)
73.87 81.78 72.47 71.33 61.47
74.29 82.10 73.64 69.06 59.12
73.45 81.45 71.30 73.62 63.83
Mean (SD) Positive Youth Development Character Caring Connection Confidence Competence
(15.40) (19.51) (17.00) (23.49) (22.73)
(14.84) (16.48) (16.47) (23.96) (23.96)
(15.97) (22.18) (17.48) (22.86) (21.24)
COCC ¼ childhood-onset chronic condition; SD ¼ standard deviation.
We then summarized the means and frequencies of key variables and conducted bivariate analyses for adolescents with and without chronic conditions. t tests were used for continuous variables and chi-square tests for categorical variables. As a final step, multivariable linear regressions were performed. The correlation between PYD and the physical health-related QoL domain was examined using Pearson correlations. All data were analyzed using STATA 14 (StataCorp LP, College Station, TX).
Results The sample consisted of 325 youth, and just over half of the sample were youth with COCC. The average age of the sample was 15 years, over half were female (56.3%), and nearly half were white (48.9%) (Table 1). The group of youth with COCC included youth with nine conditions as indicated in Table 1. The sample of adolescents with COCC was significantly different from the youth without COCC, in that the majority were white (58.9%), had a higher proportion of married parents (61.4%), and were less likely to live in Durham. There were no differences of SES as indicated by household crowding.
Table 3 Adjusted linear regression model coefficients for Positive Youth Development Positive Youth Development
Coefficient
95% Confidence interval
Chronic condition Male Age Race (reference: white) Black Hispanic Other City (reference: Durham) Raleigh/Cary Chapel Hill/Carrboro Greensboro Other Household crowding Parents married*** Intercept*** Observations F (13, 311) Probability >F R-squared Adjusted R-squared Root MSE
1.44 .27 .31
4.98 2.51 1.12
2.10 3.05 .50
1.97 5.88 4.71
1.37 12.31 10.09
5.31 .55 .67
13.03 10.60 9.76 5.30 2.74 2.42 62.06
.27 2.03 11.51 2.22 2.67 8.46 89.80
6.38 4.29 .88 1.54 .03 5.44 75.93 325 2.30 .0082 .0812 .0459 12.387
***
p < .001.
Physical QoL and PYD Mean physical QoL was 76.4, with the group with COCC having a significantly lower mean physical QoL score of 72.0 versus 80.9 for the comparison group. Physical QoL across the sample was correlated with overall PYD (p < .001), connection (p < .01), confidence (p < .001), and competence (p < .001) but not with character or caring. While the correlations between PYD and QoL ranged from weak to moderate, the strongest correlation was between physical QoL and competence (.4) (Table 4). The physical functioning subdomain of QoL was moderately correlated with overall PYD, confidence, and connection but not with character or caring. There were similar patterns for both youth with COCC and youth without.
Confirmation of PYD measure fit with data Discussion Confirmatory factor analysis showed that there was a very good to excellent close fit of the PYD latent variable and Five Cs (root mean square error of approximation ¼ .023, pclose >.05) among youth with COCC. This indicates that the PYD measure and the Five Cs constructs are clearly delineated in our data. This confirms that the same structure of the PYD measured by Lerner in the general population is also applicable to youth with COCC in this sample.
Comparisons of PYD between groups There was no significant difference between overall PYD or any of the individual PYD subdomains between the two groups. Youth with and without COCC had similar scores across all domains (Table 2). Adjusted linear regressions showed that there was not a statistically significant relationship between chronic condition status and PYD (Table 3) or character, caring, connection, confidence, and competence (results not shown). The only variable in the model found to be significantly associated with PYD was “married parents” which had significantly higher overall PYD scores (p < .01).
This study is among the first to compare PYD between youth with and without childhood-onset chronic illness. Given the limited empirical evidence on the development of the growing population of adolescents with COCC, our goal was to apply the PYD approach to youth with COCC. Confirmatory factor analysis revealed that the same structure of PYD and subdomains of character, caring, confidence, connection, and confidence as
Table 4 Correlation table between PYD (and subdomains) and physical quality of life Overall sample
Chronic condition
Comparison group
Correlation coefficient (p value) Positive Youth Development (PYD) Character Caring Connection Confidence Competence
.3027 (.0000)
.3189 (.0000)
.0604 .0258 .1586 .2627 .4040
.0403 .0920 .1822 .2725 .3609
(.2858) (.6504) (.0048) (.0000) (.0000)
(.6128) (.2490) (.0211) (.0005) (.0000)
.2958 (.0002) .1177 .0253 .1894 .2224 .4566
(.1459) (.7563) (.0186) (.0057) (.0000)
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measured by Lerner in the general population is also applicable to youth with COCC in this sample [28]. Another key aim of this study was to compare PYD between youth with COCC and those without. The sample was constructed specifically to identify youth with a range of conditions, all of which can have significant impairment and are associated with psychological vulnerability [29]. We hypothesized that youth with COCC would have lower scores on the confidence, competence, and connection subdomains but higher scores on the character and caring domains. Yet, we did not find a significant difference in overall PYD or any of the Five Cs between youth with COCC and youth without COCC. Moreover, the observed PYD and subdomain scores from this study fell within the range of PYD scores observed in the 4-H study for youth in grades 5e12 that were on an optimal longitudinal trajectory (trajectory 2) for positive outcomes, including making contributions to their communities and having higher academic competence [28]. In examining the relationship between physical impairment, as indicated by health-related QoL, character and compassion were the only subdomains of PYD that were not correlated with physical health-related QoL. Accordingly, it may be that the experience of COCC alone is not sufficient to affect PYD. Instead, the development of functional physical limitations is necessary to impact PYD or at least subdomains of confidence, competence, and connections given the correlations with physical healthrelated QoL. Specifically, lower physical health-related QoL was correlated with lower PYD on those domains. As one of the first studies on this topic, there are several limitations that should be considered. First, the study was limited by its observational, cross-sectional design and small, clinical convenience sample. These factors could have resulted in systematic biases between study participants who chose to enroll in the study and those who did not. Also, there could be differences between recruited participants who completed the online survey and those who did not. Second, the multivariable model does not account for differences in disease severity among the COCC group. In addition, the model does not adjust for healthy peers who may have acute or persistent conditions that require intensive or repetitive medical care such as infections, fractures, dermatology (acne), asthma, or obesity. However, it is important to note that analyses of physical QoL increased our confidence that there was greater variation between the groups of youth with COCC and without COCC rather than within the COCC group. Despite these shortcomings, this study provides an important first step toward examining youth with COCC from the PYD perspective. The evaluation of PYD among adolescents with COCC is critical given that prior research has identified this group as a vulnerable population that needs targeted attention to promote development. It is important to recognize the strengths of youth with COCC and to build on those strengths using the approaches that are commonly used to promote PYD among youth in general. Although the findings were contrary to our hypotheses, they are consistent with conclusions drawn from other studies that youth with COCC do well across a wide range of domains [6]. The findings from this study show no differences in PYD between youth with and without COCC and thus support the application of the PYD perspective, which have been shown to be beneficial for healthy youth, to youth with COCC. The PYD perspective has been used to develop and implement
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interventions for youth with a range of problems and promote positive outcomes, including adolescent sexual health [30], HIV-related risk behaviors [31], and academic engagement and achievement [32,33]. The results of this study suggest that similar approaches could be used to promote positive outcomes for youth with COCC. While most youth with COCC do thrive, they are at increased risk of psychological distress and are known to struggle with educational and vocational transitions. PYD-informed interventions could be used to address these problems. Given the cross-sectional nature of this study, future research is needed to better understand the long-term impact of PYD assets for youth with COCC. Additionally, longitudinal research is needed within the group of youth with COCC to assess the relationship between PYD and positive outcomes and to determine which factors are associated with the development of PYD for youth with COCC. Previous research has shown that a strong connection with school and hopeful future expectations are factors that could be examined, as they are known to be associated with higher PYD for healthy youth [34]. Finally, future research should examine the role of PYD programs, especially those with mentoring components, in ensuring the success of youth with COCC. Acknowledgments The authors thank Katie Delgado and Amanda Layne Walker for their work on this project, as well as the Duke Healthcare System patients and their families who participated in this study. Funding Sources All phases of this study were supported by the John Templeton Foundation (grant #40033), but the funder had no involvement in the study design, data collection, analysis or interpretation, writing of the report, or the decision to submit this manuscript for publication. References [1] van Dyck PC, Kogan MD, McPherson MG, et al. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med 2004;158:884e90. [2] Newacheck PW, Strickland B, Shonkoff JP, et al. An epidemiologic profile of children with special health care needs. Pediatrics 1998;102:117e23. [3] Stewart SM, Rao U, White P. Depression and diabetes in children and adolescents. Curr Opin Pediatr 2005;17:626e31. [4] Benton TD, Ifeagwu JA, Smith-Whitley K. Anxiety and depression in children and adolescents with sickle cell disease. Curr Psychiatry Rep 2007;9: 114e21. [5] Maslow GR, Haydon AA, Ford CA, Halpern CT. Young adult outcomes of children growing up with chronic illness: An analysis of the national longitudinal study of adolescent health. Arch Pediatr Adolesc Med 2011;165: 256e61. [6] Maslow GR, Haydon A, McRee A, et al. Growing up with a chronic illness: Social success, educational/vocational distress. J Adolesc Health 2011;49: 206e12. [7] Barskova T, Oesterreich R. Post-traumatic growth in people living with a serious medical condition and its relations to physical and mental health: A systematic review. Disabil Rehabil 2009;31:1709e33. [8] Lerner RM, Abo-Zena MM, Bebiroglu N, et al. Positive youth development: Contemporary theoretical perspectives. In: DiClemente RJ, Santelli JS, Crosby RA, editors. Adolescent Health: Understanding and Preventing Risk Behaviors. San Francisco, Calif.: Jossey-Bass; 2009. p.115e128. Available at: http://search.lib.unc.edu?R¼UNCb5994191; Full text available via the UNC-Chapel Hill Libraries (http://libproxy.lib.unc.edu/login?url¼http:// site.ebrary.com/lib/uncch/Doc?id¼10308110). Accessed June 10, 2015.
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