Exploring the leisure behavior patterns and experiences of youth with endocrinological disorders: Implications for therapeutic recreation
Caldwell, Linda L
The increased concern by the medical community about quality of life issues has led some physicians to question whether biomedical treatment protocols (e.g., medication and surgery) are sufficient to promote health. Questions arise such as: Even if I successfully treat this condition with medicine, will the patient be socially and emotionally healthy? This perspective moves the medical community beyond a focus on the biomedical model to a focus on health promotion that includes all aspects of health: physical, mental, emotional, and spiritual (the biopsychosocial model).
The impetus for this study came from an attempt to answer the preceeding question for adolescents who have short stature (SS) with or without delayed puberty (DP) and adolescents with diabetes mellitus (DM). The vast majority of research on adolescents with endocrinological disorders such as SS, DP, and DM is medical and physiological in nature. There is some evidence, however, to suggest that these adolescents encounter potentially significant social psychological problems that warrant further investigation. Thus, recently, the medical community has addressed the need to include quality of life concerns in treatment protocols (Brennan, 1996; Borkenstein, Limbert, Reiterer, Stalzer, & Zinggl, 1998; Greenhalgh, 1997).
Underwood and Rieser (1991) represent the more expanded and holistic perspective when they advocated that the therapy goal for adolescents with SS is to produce happier and more productive adults and not just to increase adult height. They felt that increased height to within the normal range might improve selfconcept and better psychosocial adjustment and may be more important to healthy development. Likewise, others have suggested that diabetes treatment should reach beyond a biomedical approach, which excludes psychosocial factors (Brennan, 1996; Grenhalgh, 1997), to provide patients with a good quality of life (Borkenstein et al., 1998).
Social withdrawal, feelings of social inadequacy, and social isolation may be associated with SS (McCauley, Ito, & Kay, 1991; Reiser, 1992) and DP (Finley, Crouthamel, & Richman, 1981). For example, females between the ages of 9 and 27 who had Turner’s syndrome (an endocrinological disorder comprising short stature, undeveloped ovaries and absent puberty, and many other physical abnormalities) had significantly fewer friends, needed more help from parents in socializing with peers, and lacked skill in understanding social cues when compared to controls of a similar age.
Some research has focused on a “withingroup” comparison of youth with SS and DP. For example, Stabler, Clopper, Siegel, and Stoppani (1994) compared children with SS who had isolated growth-hormone deficiency (GHD) to those with idiopathic (cause of SS unknown) short stature (ISS). Youth with GHD and who were below the 3rd percentile for height demonstrated decreased social competence in school-related activities compared with those with ISS (Stabler et al., 1994). Youth with GHD also showed higher levels of anxiety. In a follow-up study, Stabler and his colleagues (Nicholas, Tancer, Sliva, Underwood, & Stabler, 1997) found a similar phenomenon in this group.
Children and adolescents with endocrinological problems are often subject to “juvenilization” (Finley et al., 1981; Rieser, 1992; Solomon, 1986), where they are treated by others according to their appearance (they look younger than they are) rather than according to their chronological age. This phenomenon may lead to over-protection by parents and may contribute to social withdrawal, overdependence on parents, and lack of assertiveness (Reiser, 1992). In a sample of 522 youth with short stature, Sandberg and Michael (1998) found evidence from self-reports of both parents and their children that juvenilization was common. Csapo (1991) also reported greater parental control of children with SS than of age-matched controls.
Adolescents with DM do not face the same problems of those with SS and DP, but evidence does suggest that these adolescents exhibit low self-esteem, social dependency, and poor ego development (Grey, Cameron, & Thurber, 1991). In fact, it was estimated that one in five young adults who had juvenile onset diabetes exhibited psychosocial problems in a sample of Nordic youth (Kokkonen, Lautala, & Salmela, 1997). In that study, depression and social immaturity were more common than among age-matched controls.
Evidence suggests that the existence and degree of psychosocial problems depends on the length of time the individual has had the condition, although there is no consensus as to what the critical length of time is. Blake (1997) suggested that among a sample of adolescents diagnosed with diabetes, newly diagnosed adolescents were more in need of psychosocial support than those with longer histories of diabetes. Other research has suggested that the critical period for psychosocial intervention is between one and two years postdiagnosis of DM (Grey, Cameron, Lipman, & Thurber, 1995). Still others have found that psychosocial variables remained stable, even after the first year postdiagnosis when metabolic control was volatile (Grey, Lipman, Cameron, & Thurber, 1997). Although these studies just described implicated the role of metabolic control in DM as possibly being correlated with psychosocial adjustment, some researchers have suggested that even if the goals of biomedical treatment are met, the condition can still leave youth depressed and with other psychosocial problems (Grey, Boland, Yu, Sullivan-Bolyai, & Tamborlane, 1998).
Despite evidence suggesting that the medical community should be concerned with psychosocial issues among youth with endocrinological problems, it is worth noting that some studies have had mixed results. For example, although Sandberg and Michael (1998) found evidence of juvenilization among youth with SS, they also found that their sample did not report a significant number of maladaptive behaviors. Zimet, Cutler, Litvene, and Dahms (1995) found no evidence of distress, lack of self-esteem, or other measures of psychological maladjustment among a sample of children and adolescents who were referred for medical care due to short stature.
Leisure as a Quality of Life Factor
Our approach is somewhat different from the studies just reviewed in that we examined an area of great interest and concern to most adolescents and an arena that has a direct effect on adolescent quality of life and human development: leisure time activities. Issues of social, emotional, and mental health are intertwined with the developmental process, suggesting that an examination of quality of life and psychosocial adjustment take into account developmental issues. Evidence suggests that certain activities such as sports, hobbies, and the arts contribute positively to aspects of youth development (e.g., Larson, 1994; Silbereisen, Noack, & Eyferth, 1986). One of the most important tasks young people face as they move through adolescence is establishing a sense of identity. To construct an identity adolescents put together pieces of their perceived selves based on how other people react to them, and how they perceive themselves (e.g., Brooks-Gunn & Reiter, 1990; Brown, 1990). Body image is one important piece of the identity puzzle, as are perceived self-competence, social integration, degree of autonomy, and sense of control over life events. All of these developmental issues have been associated with participation in leisure activities (e.g., Kleiber, 1999). Autonomy from parents, identity development, experimentation with social and sexual roles, and achievement orientation are often associated with leisure behavior and experience (e.g., Kleiber & Kirshnit, 1991; Larson, 1994; Shaw, Kleiber, & Caldwell, 1995). Harter (1990), for example, suggested that feedback received during participation in leisure activities provides one basis for identity development. If an adolescent is bothered by his or her physical shape, it is likely to affect beliefs about who he or she is as a person. Thus, the amount an adolescent was bothered by his or her condition was measured.
Autonomy from parents is an important aspect of a youth’s life. As youth age, peers increasingly become arbiters of acceptable behavior. Although parents still exert influence on a maturing adolescent, the peer group is often a stronger influence (Brown, 1990). In addition, the opportunity and support to make one’s own decisions is critical to a youth’s quality of life (e.g,, Elliot & Feldman, 1990). These issues are often played out in leisure contexts. Unsupervised leisure time grows for maturing youth, allowing these developmental processes to take place (e.g., peer influence, self-determined action, and experimentation with actions and consequences). Adolescents who feel that their parents have too much control over their burgeoning freedom either become bored (e.g., Caldwell, Darling, Payne, & Dowdy, 1999) or rebel (e.g., Caldwell & Darling, 2000). The perception of parental control among adolescents with SS, DP, and DM is particularly important due to the tendency of parents to juvenilize their children.
The body of literature on the amount of time spent in leisure activities and the qualitative nature of the leisure experience among youth and adolescents continues to grow. Too much time or too little time spent in activities seems detrimental to youth and adolescents, and has been associated with substance use and delinquent behavior (e.g., Caldwell & Smith, 1995; Smith, 1997). High levels of boredom and low levels of self-competence and self-determination have been associated with a variety of health compromising behaviors such as substance use, vandalism, and violence (e.g., Caldwell & Darling, 2000; IsoAhola & Crowley, 1991; Patterson, Pegg, & Dobson-Patterson, 2000). On the other hand, as suggested previously, being engaged in leisure activities in a self-determined manner leads to a number of healthy developmental outcomes. Thus, the leisure behavior and experience of youth with SS, DP, and DM is an important line of research.
The purpose of our study was to determine whether therapeutic recreation intervention is necessary in the lives of adolescents with SS, DP, and DM. To do so, we examined the leisure behavior patterns and experiences of youth with SS, DP, and DM. Our research questions were the following. Question 1: Is there a difference in the number of hours of participation in leisure activities among adolescents with SS, DP, and DM compared with adolescents with other endocrinological problems? Question 2: Do adolescents with SS, DP, and DM experience leisure differently than their peers without these disorders but who do have other endocrinological problems? We conjectured that the extent that adolescents were ‘bothered’ by their SS, DP, or diabetes (Question 3) and recency of when they perceived they had a problem (Question 4) might also influence their leisure experience and behavior.
These questions are important to answer because we know that not all adolescents are able to derive the full developmental and health benefits of participation in leisure activities without assistance (e.g., with TR services). Youth with endocrinological disorders are not commonly receiving TR services; therefore, this study helps to identify whether or not there is a need for TR intervention in the lives of these youth. Therapeutic recreation specialists (TRSs) are in unique positions to address the social psychological issues that might result from endocrinological disorders in both hospital and community settings.
Methods
Diagnosis of Endocrinological Disorders
A child is diagnosed with SS if he or she is two or more standard deviations below the mean (approximately the 5th percentile) on the standard height by age growth curve, or who fails to grow more than 3.5-4 cm/year when prepubertal or more than 6 cm/yr if pubertal (Solomon, 1986). In the U.S. more than 2 million children fall below the 5th percentile for height on a growth chart (Reiser, 1992). DP is measured by a physician’s estimate that the onset of physical sexual development is greater than two standard deviations beyond the mean time of onset in normal development. Commonly, DP and SS co-occur (SS/ DP). DM is the most common endocrine disorder in adolescence and is clinically diagnosed.
Sample and Procedures
Participants in this study came from a clinical sample of adolescents who presented themselves for treatment in an endocrine clinic associated with a university teaching hospital in central Pennsylvania. All adolescents in the study were diagnosed with an endocrinological problem. For the purposes of our study, adolescents were grouped into the following three categories: SS/DP, DM, and comparison. The comparison group was comprised of adolescents with other endocrine disorders such as thyroid, adrenal, and parathyroid conditions. None of the comparison group had DP, SS, DM, nor any visible physical abnormality. This group was considered an adequate comparison because their disorders have not been linked with the concerns of youth with SS, DP, and DM presented previously. Therefore, all three groups represented individuals seeking health care.
Placement into the SS/DP group and DM group was based on physician diagnosis. The SS and DP groups were combined (SS/DP) because all DP subjects also had SS. Furthermore, there was no difference in leisure activity variables between the two groups (SS and DP). The SS and DP youth also had visible physical characteristics, whereas the DM and the comparison groups did not. Therefore, there were three distinct groups, all with chronic illness: SS/DP, DM, and comparison.
Adolescents between the ages of 11 and 19 who presented for treatment were asked if they would fill out a short questionnaire about their leisure interests while they were waiting to be seen. If the adolescent agreed to participate and the parents) gave consent, the adolescent was taken by a research assistant or clinical nurse to a private room and given the questionnaire.
Of the 178 adolescents who agreed to participate in the study, 83 were male and 91 were female. The ages ranges from 11 to 19 (M = 14.5). Forty-one percent were diagnosed as SS/DP, 25% were DM, and 34% were included in the comparison group. Of those diagnosed as SS/DP, about 60% had noticed over 15 months ago they were delayed in development. Similarly, 66.7% of those diagnosed with DM perceived a delay in development over 15 months ago.
Measures
Leisure behavior participation (Question 1) was measured by determining the number of hours spent in a variety of commonly pursued activities of youth (e.g., social, sports, and relaxation). The respondents were instructed to think about what they usually did during the week and indicate which number of hours best reflected their typical participation: 0, 1-2, 3-5, 6-10, and 11 or more. The response categories were based on the work of a large, nationally representative study conducted by Brown, Dornbusch, and Steinberg (see Caldwell & Darling, 1999). Data were coded using the midpoints of each response category and then log transformed due to skewness. It is the transformed data that are used in analysis. Therefore, direct interpretation of the number of hours spent in each activity is not possible (although if mean scores within response code are used, the activity pattern is identical).
The leisure experience measures (Question 2) were chosen to reflect the social psychological and developmental concerns expressed in the literature (e.g., McCauley et al., 1987; Nicholas et al., 1997; Stable et al., 1994) regarding youth with endocrinological disorders. These measures included self-determination in leisure, self-competence in leisure, affinity toward a challenge in leisure; amount of perceived parental control over free time activities; and level of boredom in leisure. These variables were important due the possibility of juvenilization, perceived lack of social and personal competence, and over-protection by parents.
Each of the leisure experience variables were measured using an index comprised of three to four items, coded on a 5 point Likert scale where 1 indicated a low level of the variable and 5 indicated a high level of the variable. The boredom and challenge indices came from the Leisure Experience Battery for Adolescents (Caldwell, Smith, & Weissinger, 1992). The other experience indices were researcher developed. Although a discussion of the development of these indices is beyond the scope of this paper, these measures have been used in previous studies (e.g., Caldwell & Darling, 2000). The Cronbach’s alpha reliability scores for the various indices used in this study were: boredom in leisure = .70 (4 items), challenge = .68 (4 items), self-competence = .61 (3 items), self-determination = .53 (5 items), and parental control = .73 (3 items).
For question 3, how much adolescents were bothered by their height and slower sexual maturation was measured by using visual analog scales comprised of a 13 cm line anchored by “a lot” (0 cm) and “not at all” (13 cm). The adolescent was asked to place a mark along this line to indicate how much he or she was bothered. Marks were coded according to the number of centimeters the line was from the left side of the line (0 cm). The amount they were bothered by their height and slower sexual maturation scores were averaged to form an overall index to measure the degree to which SS/DP bothered the adolescent. This item was researcher developed.
Recency of having perceived a problem (Question 4) was measured by asking youth with SS/DP to indicate how long ago they noticed that they were less sexually developed or shorter than their peers. The youth were asked to respond to the following answer categories: during this past spring (coded as 3 months), during the past winter (coded as 6 months), during the past fall (coded as 9 months), during this past summer (coded as 12 months), and since before last summer (coded as 15 months).
Results
To statistically test for differences among mean scores on the variables of interest, we used multiple analysis of covariance (MANCOVA) to first test for differences among the three groups’ (i.e., SS/DP, DM, and comparison) leisure behavior (i.e., participation in sports, social activities, expressive activities, relaxational activities, outdoor activities, and other activities; Question 1). A second MANCOVA was run for Question 2 to test for differences among the groups’ leisure experience (i.e., boredom, challenge, perceived parental control, self-determination, and self-competence). The GLM Multivariate and Univariate procedures in SPSS for Windows were used for the analysis. Amount bothered and recency variables were treated as independent variables because we thought that how much someone was bothered by their height or sexual development, or how long they had lived with their condition, might influence their participation (Questions 3 and 4). Amount bothered and recency were entered as covariates in the GLM Multivariate procedure, but were treated as independent variables for analysis purposes. If the MANCOVA indicated that there were significant differences, the univariate analyses were used to identify those significant differences. Correlation analysis was also conducted on the variables.
Figure I compares the mean hours per week that the youth engaged in various activities by diagnosis. As foreshadowed by Figure 1, MANCOVA indicated that there were no significant differences among the three groups (Pillars Trace p
Figure 2 compares the leisure experience means across group. MANCOVA suggested that overall, there was a difference in the variables that could be attributable to diagnosis (Pillars Trace p
Correlation analysis assisted in furthering determining the nature of these relationships. Significant but not strong correlations were found for the relations between recency and parental control (-.306, p
Post Hoc Analysis
Our study examined whether individuals with SS/DP and DM participated in and experienced leisure differently from a group of adolescents who, although had endocrinological diagnoses, did not possess the same physical and biological problems. Since there has been no prior research on the leisure experience and behavior of youth with SS, DP, and DM, a clinical comparison appeared to be the best place to start.
We did wonder, however, if the non-significant differences might be attributed to the fact that all youth came from a clinical sample. Thus, we compared the mean scores and frequency distributions of the leisure experience variables from this sample to similar data from other samples (roughly the same age range) one of the authors had previously collected.1
When making comparisons across the sampies, note that some of the samples have unique characteristics (SAL and LGBQ) and some are more like the general population (Rock94, Majors, Carlisle, and Non-LGBQ). The SAL data set recruited youth who hungout informally in places where risky health behaviors were known to occur (e.g., drugs and alcohol consumption) and the LGBQ group was comprised of youth who were considered lesbian, gay, bisexual, or questioning their sexual identities. Responses from youth from these two data sets typically demonstrate higher levels of boredom and parental control, and lower levels of self-determination in their leisure.
Figures 3 through 5 display the comparative data for boredom in leisure, self-determination, and parental control. Although statistical testing is beyond the scope of this paper, visual inspection of the means suggests that our clinical sample may be more bored. Boredom mean scores, which were calculated from the identical index across all samples and are presented in Figure 3, were higher for the clinical sample 2.98 (SS/DP and DM) and 2.67 (comparison) than for any of the other samples (range 1.96-2.08).
Only minimal differences in levels of selfdetermination in leisure across the samples exist (see Figure 4); these self-determination means ranged from 3.28 to 2.77. The SAL sample (N = 121) has the lowest mean level of reported self-determination (2.77), while the DM group had a mean of 3.28 and the SS/DP group had a mean of 3.16.
We compared levels of parental control over leisure activities across various samples. The youth with SS/DP and DM had mean values of parental control of 2.98 (the comparison group’s mean was 2.67). The other samples’ mean levels of parental control ranged from 2.47 to 2.95, with the LGBQ sample having the highest mean.
Although it is difficult to make any conclusions about the differences in mean scores across these various samples, these comparisons suggest that there is some consistency in the clinical sample’s mean level of self-determination as compared to the other samples’ means. It is possible, but not conclusive, that the clinical sample in this study reported higher levels of boredom in leisure. The clinical sample also reported levels of parental control similarly high to the LGBQ group, all of which are higher than the other sample’s means.
Discussion
This study posed four questions concerning leisure activities and experiences among adolescents with short stature and delayed puberty (SS/DP), diabetes mellitus (DM), and a clinical comparison group. Adolescents with short stature and delayed puberty, and diabetes mellitus did not spend more or less time participating in the various leisure activities that were evaluated than the clinical comparison group (Question 1). Furthermore, these adolescents were not different from the comparison group in regard to boredom, challenge, selfdetermination, self-competence, or parental control, as measures of their leisure time experience (Question 2). Duration of adolescents’ condition (Question 3) was not significantly related to the leisure experience and behavior variables. Recency of diagnosis (Question 4) was associated with higher levels of perceived parental control of leisure activities among those with SS/DP and DM.
Post hoc comparisons with other non-clinical groups studied elsewhere suggested that youth with SS/DP and DM may be more bored than youth that were sampled in other studies. At the same time, the youth in the current study appeared to have the same levels of parental control in leisure and self-determination in leisure as did the youth in the comparison samples. Neither of these statements, however, are backed by statistical analysis and future research could address this question.
This study was initiated for two related reasons. First, one of the authors (JWF) felt that based on his clinical practice, youth with endocrinological disorders might have psychosocial needs not identified or addressed by the biomedical model of care to which they were exposed. The second reason was that the literature, although scant, suggested that youth with endocrinological disorders had lower levels of psychosocial adjustment to life than youth without endocrinological problems. Furthermore, the literature suggested that youth with endocrinological disorders had more adjustment problems as adults than their peers without similar disorders.
Since the initiation of this study, there has been a debate in the medical literature regarding (a) whether or not to treat youth with growth hormone deficiency (GHD-one form of SS) with growth hormone and (b) whether or not youth with GHD are in any way different from their peers without GHD (e.g., Kranzler, Rosenbloom, Proctor, Diamond, & Watson, 2000; Saenger, 2000; Voss, 2000a, b). There is growing support that suggests that on all indicators, youth with GHD (but not for those with Turners’ syndrome or short stature associated with chronic renal disease) are not really any different than their peers in regard to psychosocial behaviors. Voss (2000a) has suggested that the differences previously ascribed to youth with GHD were products of society’s obsession with perfection and the need to fit into a tight range of expected physical attributes. Our findings suggest that Voss may be correct.
On the other hand, a recent study by Zimet, Owens, Dahms, Cutler, Litvene, and Cuttler (1997) examined the psychosocial functioning of adults who were evaluated as children for short stature and were not treated with human growth hormone. Their findings supported that childhood height is not associated with psychosocial adjustment problems. But, they also found that shorter adult stature is associated with lower self-esteem and greater emotional distress. The debate in the literature and the methodological problems associated with previous studies (Voss, 2000a) suggest that the case is not closed on whether or not, and how, youth with some endocrinological disorders experience psychosocial problems. As Saenger (2000) stated, “Now, nearly 15 years later, the answer is still elusive” (p. 106).
Kranzler and his colleagues (2000) suggested one possible answer for the differences in results across studies. Suspecting a referral bias, they compared scores on a variety of academic and social functioning variables across youth with normal short stature (NSSwhich is the same as ISS) who were referred for medical treatment, youth with NSS who were not referred for treatment, and children with normal stature. Their referral bias hypothesis was supported in the following ways. Parents of children with NSS who were referred for treatment rated their children as having significantly more attention and concentration problems than the other two groups. These parents also reported that their children had more trouble with social skills than either of the other two groups. Kranzler et al. (2000) concluded that children without NSS and children with NSS who were not referred for treatment were the same. They also concluded that, if problems arose or if parents suspected problems associated with NSS, they were more likely to seek help.
A referral bias possibly explains why the clinical groups (SS/DP, DM, and comparison) in the present study did not differ in leisure behaviors. The parents of the youth in these groups might have believed that their children were experiencing some type of problem associated with their diagnosed endocrinological problem, which is why they presented for treatment. If this were true, all groups would be similar in the levels of problems (and would not, by extension, be the same as peers with or without SS/DP in the general population). The possibility of a referral bias suggests that future research should consider testing for the referral bias vis-a-vis the leisure behavior and experiences of youth with SS/DP among clinical, non-clinical, and general population samples.
In the present study, parental control of leisure was higher for youth with SS/DP and DM than for the comparison group at p
Our study does not suggest that adolescents with endocrinological disorders are in need of TR services, although this finding runs contrary to some of the available research. Nevertheless, because of the large prevalence of youth with these endocrinological disorders, TRSs should at least be cognizant of this group of youth. It seems that, for example, provision of leisure education may be a valuable service. Recent research using a coping skills training program on an experimental group of adolescents who were beginning treatment for DM demonstrated not only better metabolic control, but also better general self-efficacy and increased quality of life than youth in the control group (Grey, Boland, Davidson, Yu, & Tamborlane, 1999). Thus, by extension, leisure education might also prove valuable. Hopefully, further research will help to clarify some of the issues raised in this paper.
Both methodological and practical issues are implicated as a result of this study. Qualitative data would be useful to more fully understand these youth’s experiences in leisure, as well as levels of parental control. Furthermore, it should be noted that the sample size for each group was relatively small. A lack of power causing a Type II error could be an alternate explanation for our findings. Because of the small sample and cell sizes, it would be helpful to replicate this study using a larger clinic sample, or ideally, a mixed clinical and non-clinical sample. Additionally, future research should examine these relationships from a longitudinal perspective especially evaluating the effects of treatment since other research has suggested that youth with endocrinological disorders experience problems as adults (e.g., Gray et al., 1998; Reiser, 1992). This latter research should take into account the developmental stages and issues associated with adolescence. Finally, more complex models that include moderating and mediating variables should be used.
Copyright National Recreation and Park Association Third Quarter 2001
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