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Colleen F Bechtel Driscoll, Grayson N Holmbeck, Self-Management in Youth With Spina Bifida: Associations With Parent Factors in the Context of a Summer Camp Intervention, Journal of Pediatric Psychology, Volume 48, Issue 1, January 2023, Pages 51–66, https://doi.org/10.1093/jpepsy/jsac058
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Abstract
To investigate cross-sectional and longitudinal associations between parent factors and self-management for youth with spina bifida (SB).
Participants were 89 camper–parent dyads recruited for a summer camp program for youth with SB (Myouthage = 12.2 years); 48 of these families participated across 2 years. Campers and parents completed assessments at Time 1 (pre-camp) and Time 3 (post-camp) for one or two summers. Parents reported on demographics, their own adjustment, perceptions, attitudes, and behaviors, and youth condition-related responsibility and task mastery. Youth also reported on condition-related responsibility. Hierarchical multiple regression analyses and multilevel modeling were used to examine relationships between parent factors and youth self-management.
Parents’ expectations for future goal attainment were positively associated with camper responsibility and task mastery, and these associations were moderated by camper age (only significant for older campers). When examining changes over one summer, parental expectations for the future were significantly associated with changes in campers’ condition-related task mastery. When examining trajectories across summers, parental perception of child vulnerability was negatively associated with the slope of condition-related responsibility and parents’ expectations for future goal attainment were positively associated with the slope of task mastery.
Parent perceptions and behaviors may be important targets for assessment and intervention when promoting condition-related independence for youth with SB.
Introduction
Spina bifida (SB) is the most common congenital birth defect of the central nervous system, affecting 3 of every 10,000 live births in the United States (Centers for Disease Control and Prevention, 2011). Individuals with SB face a unique and complex set of physical, psychosocial, and cognitive challenges (Copp et al., 2015). SB is also associated with a number of complications, including lower-body paralysis, urinary and bowel dysfunction, and hydrocephalus (Copp et al., 2015). It is not uncommon for the extensive medical regimen of children with SB to include medications, clean intermittent catheterization, bowel programs, skin checks, monitoring of shunt functioning, and use of orthopedic devices (Copp et al., 2015; Sandler, 2010). Adherence to this complex medical regimen is necessary to prevent life-threatening complications such as urinary tract infections and pressure injuries (Copp et al., 2015).
Although many youth with SB desire autonomy, including independence in managing condition-related responsibilities, these youth can be slow to acquire this independence (Holmbeck & Devine, 2010), with one study finding that 60% of children with SB require moderate or high levels of caregiver assistance to carry out daily condition-related tasks (Dahl et al., 2000). Indeed, youth with SB often lack the executive, cognitive, or fine motor functioning required to complete condition-related tasks independently (Copp et al., 2015). However, the ultimate goal of most families is to transfer condition-related responsibilities from parents to youth with SB (Sawin et al., 2009).
Multiple general and condition-specific theoretical models of pediatric self-management have been proposed. For example, Modi et al.’s (2012) Pediatric Self-Management Model posits that self-management behaviors operate within individual, family, community, and health care system contexts and that all four of these key domains include both modifiable and non-modifiable factors that can influence self-management behaviors (also see Ryan and Sawin, 2009). In line with this model, a number of factors, including condition severity (e.g., lesion level; Greenley et al., 2006; Yun & Kim, 2017; Zukerman et al., 2011), neurocognitive factors (e.g., attention and executive functioning, Stern et al., 2018), personal factors (e.g., condition-related knowledge and self-efficacy; Ievers et al., 1999; Stepansky et al., 2010), and interpersonal factors (e.g., family functioning and peer relations; Holmbeck & Devine, 2010; Kayle et al., 2020), have been identified as affecting self-management behaviors in children and adolescents with SB specifically. However, few studies have been conducted to identify modifiable factors that affect self-management in this population.
Parents play an essential role in shaping the home environment for all youth, but especially for youth with SB who are dependent on their parents for both typical and medical caregiving (Copp et al., 2015). The theoretical models mentioned above (e.g., Modi et al., 2012; Ryan & Sawin, 2009) highlight parent factors—including parent adjustment, stress, perceptions, attitudes, behaviors, and expectations—as having the potential to influence condition-related independence for youth with SB. However, there is very little research investigating associations among parent factors and SB self-management. Therefore, the current study sought to increase understanding of how parent personal adjustment factors (personal distress, general parenting stress, SB-specific parenting stress) and parental perceptions, attitudes, and behaviors (parental perception of child vulnerability [PPCV], illness uncertainty, overprotection, optimism, expectations for the future) are associated with self-management in youth with SB.
Few interventions exist that address the unique self-management needs of individuals with SB. While two mobile health interventions focused on self-management in young adults with SB have demonstrated promising results (Amaral, 2016; Dicianno et al., 2016), only one self-management intervention, a summer camp-based program, has included children with SB in the evaluation process. Although two previous studies have found that this summer camp-based intervention is effective at increasing independence in completing self-management activities for youth and adolescents with SB (Holbein et al., 2013; O’Mahar et al., 2010), we know little about how modifiable factors might influence youths’ responses to the intervention. Given the brevity of the camp experience, parents play a critical role in ensuring that the gains made at camp are maintained over time. Therefore, an additional purpose of the proposed study was to better understand potential associations among parent adjustment factors, parental perceptions, attitudes, and behaviors, and youth response to the camp-based intervention.
The present study had three objectives. The first objective was to identify cross-sectional associations between the parent variables (i.e., parent adjustment and parent perceptions/attitudes/behaviors) and youth self-management (youth responsibility for and youth mastery over condition-related tasks; see Figure 1). The second objective was to examine relationships between these parent variables and youth responses to the camp-based intervention (e.g., changes in youth self-management) within the same summer. The third objective was to examine the roles of parent factors in explaining variability in youth self-management trajectories for youth who participated in the intervention across two summers. For all three objectives, it was hypothesized that lower levels of parental distress, general parenting stress, SB-specific parenting stress, PPCV, parental illness uncertainty, and parental overprotection and higher levels of parental optimism and expectations for the future, would be associated with higher levels of or greater increases in youth condition-related responsibility and mastery over condition-related tasks. Finally, both youth self-management behaviors and parental perceptions/attitudes/behaviors were expected to change as youth age (e.g., youth responsibility and mastery increasing; PPCV and overprotection decreasing). Because the age range of youth in this study’s sample spanned multiple developmental periods (childhood and adolescence) and due to the expected changes in many study variables with changes in child age, this study will also examine age as a moderator of the relationships between parent factors and youth self-management across all three objectives.
Methods
Participants
Participants were recruited for an ongoing longitudinal study examining the effects of a camp-based intervention targeting social and medically-based independence for youth and young adults with SB (Holbein et al., 2013; O’Mahar et al., 2010). Although this intervention study has been ongoing since 2009, the current study used data from the summers of 2017 and 2018, as these were the first two summers that included assessment of parent factors.
Participants were youth attending an overnight summer camp in northern Illinois as well as one participating parent/caregiver. Camp Independence exclusively serves individuals with SB and is conducted across 8 week-long consecutive sessions, with each session serving one of three age groups (children: ages 7–13 years; adolescents: ages 14–19 years; young adults: ages 20+ years). Those with severe allergies or unpredictable health conditions (e.g., uncontrolled seizures) were ineligible. Financial assistance was available to all families as needed. Every registered camper was approached to participate in the research study. Because parental involvement was not included in study procedures for young adult campers (those >20 years), only data from child and adolescent participants (e.g., <20 years of age) were included in this study’s analyses. Additionally, there were adolescent campers (N = 5; 3 in 2017, 2 in 2018) who completed study procedures without a parent participant; these campers were excluded.
The final sample included 89 camper–parent dyads (Figure 2). Of these families, 20 (21.5% of the total sample) participated in 2017 only, 21 (23.6% of the total sample) participated in 2018 only, and 48 (53.9% of total sample) participated across both years. Data from the first year that families participated (either 2017 or 2018) was included as Year 1 data in analyses. Youth and family demographic information and youth condition-related information are included in Table I. Demographic information (e.g., race/ethnicity, age) was not collected from parent participants.
. | Youth (N = 89) . | Parent Year 1 (N = 89) . | Parent Year 2 (N = 48) . |
---|---|---|---|
M (SD) or N (%) . | N (%) . | N (%) . | |
Gender: female | 54 (60.7%) | 78 (87.6%) | 41 (93.2%)a |
Age | 12.20 (3.00) | — | — |
Race | |||
White | 64 (71.9%) | — | — |
African-American/Black | 8 (9.0%) | — | — |
Hispanic | 11 (12.4%) | — | — |
Asian/Asian American | 3 (3.4%) | — | — |
Multi-racial | 3 (3.4%) | — | — |
Previous years attended camp | 2.67 (2.66) | — | — |
Family income | 9.23 (5.82)a | — | — |
IQ | 89.52 (16.10) | — | — |
SB type | |||
Myelomeningocele | 73 (82.0%) | — | — |
Other | 7 (7.9%) | — | — |
Unknown/not reported | 9 (10.1%) | — | — |
Lesion level | |||
Thoracic | 1 (1.1%) | — | — |
Lumbar | 53 (59.6%) | — | — |
Sacral | 18 (20.2%) | — | — |
Unknown/not reported | 17 (19.1%) | — | — |
Shunt: present | 66 (74.2%) | — | — |
Unknown/not reported | 1 (1.1%) | — | — |
Ambulation | |||
No assistance | 5 (5.6%) | — | — |
Braces, crutches, or combination (does not include wheelchair) | 28 (31.4%) | — | — |
Includes Wheelchair | 56 (62.9%) | — | — |
. | Youth (N = 89) . | Parent Year 1 (N = 89) . | Parent Year 2 (N = 48) . |
---|---|---|---|
M (SD) or N (%) . | N (%) . | N (%) . | |
Gender: female | 54 (60.7%) | 78 (87.6%) | 41 (93.2%)a |
Age | 12.20 (3.00) | — | — |
Race | |||
White | 64 (71.9%) | — | — |
African-American/Black | 8 (9.0%) | — | — |
Hispanic | 11 (12.4%) | — | — |
Asian/Asian American | 3 (3.4%) | — | — |
Multi-racial | 3 (3.4%) | — | — |
Previous years attended camp | 2.67 (2.66) | — | — |
Family income | 9.23 (5.82)a | — | — |
IQ | 89.52 (16.10) | — | — |
SB type | |||
Myelomeningocele | 73 (82.0%) | — | — |
Other | 7 (7.9%) | — | — |
Unknown/not reported | 9 (10.1%) | — | — |
Lesion level | |||
Thoracic | 1 (1.1%) | — | — |
Lumbar | 53 (59.6%) | — | — |
Sacral | 18 (20.2%) | — | — |
Unknown/not reported | 17 (19.1%) | — | — |
Shunt: present | 66 (74.2%) | — | — |
Unknown/not reported | 1 (1.1%) | — | — |
Ambulation | |||
No assistance | 5 (5.6%) | — | — |
Braces, crutches, or combination (does not include wheelchair) | 28 (31.4%) | — | — |
Includes Wheelchair | 56 (62.9%) | — | — |
Note. Yearly family income was reported on a 21-point scale, from <$10,000 per year to >$200,000 per year, with each point on the scale representing increments of $10,000. For this sample, family income ranged from <$10,000 to >$200,000 per year with a mean of ∼$92,000 and a standard deviation of ∼$58,000. Youth and Year 1 N includes families that participated in 2017 only, in 2018 only, or in 2017 and in 2018.
Sample size is reduced for these characteristics due to missing data/assessments.
. | Youth (N = 89) . | Parent Year 1 (N = 89) . | Parent Year 2 (N = 48) . |
---|---|---|---|
M (SD) or N (%) . | N (%) . | N (%) . | |
Gender: female | 54 (60.7%) | 78 (87.6%) | 41 (93.2%)a |
Age | 12.20 (3.00) | — | — |
Race | |||
White | 64 (71.9%) | — | — |
African-American/Black | 8 (9.0%) | — | — |
Hispanic | 11 (12.4%) | — | — |
Asian/Asian American | 3 (3.4%) | — | — |
Multi-racial | 3 (3.4%) | — | — |
Previous years attended camp | 2.67 (2.66) | — | — |
Family income | 9.23 (5.82)a | — | — |
IQ | 89.52 (16.10) | — | — |
SB type | |||
Myelomeningocele | 73 (82.0%) | — | — |
Other | 7 (7.9%) | — | — |
Unknown/not reported | 9 (10.1%) | — | — |
Lesion level | |||
Thoracic | 1 (1.1%) | — | — |
Lumbar | 53 (59.6%) | — | — |
Sacral | 18 (20.2%) | — | — |
Unknown/not reported | 17 (19.1%) | — | — |
Shunt: present | 66 (74.2%) | — | — |
Unknown/not reported | 1 (1.1%) | — | — |
Ambulation | |||
No assistance | 5 (5.6%) | — | — |
Braces, crutches, or combination (does not include wheelchair) | 28 (31.4%) | — | — |
Includes Wheelchair | 56 (62.9%) | — | — |
. | Youth (N = 89) . | Parent Year 1 (N = 89) . | Parent Year 2 (N = 48) . |
---|---|---|---|
M (SD) or N (%) . | N (%) . | N (%) . | |
Gender: female | 54 (60.7%) | 78 (87.6%) | 41 (93.2%)a |
Age | 12.20 (3.00) | — | — |
Race | |||
White | 64 (71.9%) | — | — |
African-American/Black | 8 (9.0%) | — | — |
Hispanic | 11 (12.4%) | — | — |
Asian/Asian American | 3 (3.4%) | — | — |
Multi-racial | 3 (3.4%) | — | — |
Previous years attended camp | 2.67 (2.66) | — | — |
Family income | 9.23 (5.82)a | — | — |
IQ | 89.52 (16.10) | — | — |
SB type | |||
Myelomeningocele | 73 (82.0%) | — | — |
Other | 7 (7.9%) | — | — |
Unknown/not reported | 9 (10.1%) | — | — |
Lesion level | |||
Thoracic | 1 (1.1%) | — | — |
Lumbar | 53 (59.6%) | — | — |
Sacral | 18 (20.2%) | — | — |
Unknown/not reported | 17 (19.1%) | — | — |
Shunt: present | 66 (74.2%) | — | — |
Unknown/not reported | 1 (1.1%) | — | — |
Ambulation | |||
No assistance | 5 (5.6%) | — | — |
Braces, crutches, or combination (does not include wheelchair) | 28 (31.4%) | — | — |
Includes Wheelchair | 56 (62.9%) | — | — |
Note. Yearly family income was reported on a 21-point scale, from <$10,000 per year to >$200,000 per year, with each point on the scale representing increments of $10,000. For this sample, family income ranged from <$10,000 to >$200,000 per year with a mean of ∼$92,000 and a standard deviation of ∼$58,000. Youth and Year 1 N includes families that participated in 2017 only, in 2018 only, or in 2017 and in 2018.
Sample size is reduced for these characteristics due to missing data/assessments.
Procedure
The current study was approved by the university Institutional Review Board and utilized a multi-method, multi-informant longitudinal research design. Figure 3 depicts the flow of the study. A letter explaining the study, a camper consent/assent form, a caregiver consent form, and Time 1 questionnaires were sent to families in the mail roughly 1 month prior to the first day of camp. Families who had not returned questionnaires prior to coming to camp were given the opportunity to do so on the first day of camp. Families were paid $10.00 for completing Time 1 questionnaire packets. Neurocognitive tests were administered by trained research assistants at Time 2 (during the camp week). Time 3 questionnaires were sent to parent and child participants approximately one month post-intervention via mail with prepaid envelopes for return. In summer 2018, families were given a choice to receive their Time 3 questionnaires in hard copy via mail or electronically, through Opinio, via email. Of the 68 families who participated in 2018, 36 (52.9%) chose to receive Time 3 questionnaires electronically, and 24 of these families (66.7%) returned completed electronic questionnaires. The remaining 32 families opted to receive hard copies of questionnaires, and 24 (75%) returned completed Time 3 questionnaires. Families who opted to receive questionnaires electronically had significantly younger campers [t(66) = 2.27, p < .05] and significantly higher family income [t(66) = –2.47, p < .05] than those who chose to receive hard copies of questionnaires (Mage: 11.33 years [electronic], 12.97 [hard copies]; Mincome: 11.69 [electronic], 8.13 [hard copies]). The overall return rate for Time 3 questionnaires for child and adolescent participants was 63.5% in 2017 and 72.1% in 2018. Upon receipt of Time 3 questionnaires, families were paid $40.00 (via a check sent in the mail). All materials were available in in either English or Spanish. Questionnaires that were only available in English were adapted for Spanish speakers using forward and back translation. The current study uses both youth- and parent-reported questionnaire data as well as the results of neurocognitive tests administered by trained research assistants during the camp week (see Figure 3). Data are available upon request.
Intervention
The intervention has been described previously (Holbein et al., 2013; O’Mahar et al., 2010). Generally, the intervention was designed to address previously identified social and independence difficulties specific to youth and young adults with SB. The intervention is embedded within a typical camp program designed for individuals with SB that includes swimming, arts and crafts, and other outdoor/physical activities.
The independence intervention has three main components: (a) goal-setting, (b) counselor monitoring of goals, and (c) 1-hr daily workshops. Before the start of camp, parents and campers collaborate to identify two specific goals—one health-related self-care goal and one social goal—for the campers to work on throughout the camp session. At camp, trained counselors monitor camper goals and collaborate with campers daily to review campers’ specific goals, identify daily steps to achieve goals, and discuss barriers to goal achievement. A trained post-baccalaureate research assistant lives at camp each week and is available to aid counselors in tracking goal progress during the week.
In addition to goal-setting and monitoring, campers participate in hour-long groups, called “Independence Workshop,” that occur on 4 days of the camp week for ∼1 hour each day. Workshops include psychoeducation and discussion of strategies (e.g., problem-solving and communication) aimed at promoting health-related and social independence. Workshops are led by trained post-baccalaureate research assistants, follow a manualized curriculum for each session, and include multiple interactive activities, such as group and partner discussions, art projects, games, workbook exercises, and role plays. Each day, a different topic is addressed: (a) communication and taking care of relationships, (b) self-esteem and emotional wellness, (c) living with SB (e.g., personal reactions and dealing with others’ reactions to SB), and (d) health-related self-care and planning for the future. Campers are provided workbooks to use throughout the week and take home with them. Three versions of the intervention manual are used to ensure developmentally appropriate content and activities for each age group (7- to 13-year old campers, 14- to 19-year old campers, 20+ year old campers). Minor revisions (changes to the warm-up games and activities) were made to the intervention prior to the start of camp in 2018. However, the overall content of each session remained consistent.
Measures
Covariates
Medical and Demographic Factors
At Time 1, parents completed a demographics form assessing camper’s age, gender, race, and medical characteristics (i.e., lesion level, SB type, number of shunt surgeries, and ambulation status). Total household income was reported on a 21-point scale, from <$10,000 per year to >$200,000 per year, with increments of $10,000.
Youth Intellectual Functioning
Youth were administered the Vocabulary and Matrix Reasoning subtests of the Wechsler Abbreviated Scale of Intelligence (Wechsler, 1999) while at camp (Time 2). Scores on these two subtests can be used to compute an estimated Full Scale IQ (FSIQ), which functions as a proxy for general intellectual functioning. If already administered within the past 2 years, FSIQ scores were extracted from previous camp evaluations.
Outcome Measures
Condition-Related Responsibility
The Sharing of Spina Bifida Management Responsibilities (SOSBMR) was adapted from the Diabetes Family Responsibility Questionnaire (Anderson et al., 1990; Smith & Holmbeck, 2021), a measure that has shown adequate internal consistency, factor structure, and concurrent validity. The SOSBMR was used to assess responsibility for SB tasks across several domains (e.g., health appointments, communication about SB, medications). Campers and parents indicated who was responsible for 34 SB-related tasks (1 = parent, 2 = shared, 3 = camper, or not applicable). Mean total scores were computed, with higher scores indicating greater camper responsibility for condition-related tasks (reliability = .95). In this sample, parent-and camper-reports on the SOSBMR (r = .78–.85) were found to be highly correlated. Therefore, in an effort to limit common method variance as well as Type 1 error, a composite total score for this variable was created and used in subsequent analyses.
Mastery of Self-Management Tasks
The 48-item SB Independence Survey was adapted from a validated diabetes questionnaire (Diabetes Independence Survey; Smith & Holmbeck, 2021; Wysocki et al., 1996). Parents responded “yes,” “no,” “not sure,” or “N/A” regarding their child’s mastery of condition-related skills (e.g., medication management, catheterization). Ratio scores of “yes” responses to the total number of item responses were calculated to determine the degree to which a camper had mastered condition-related tasks, with high scores indicating greater mastery of tasks (reliability = .96).
Parent Measures: Adjustment
Parent Distress
Parents completed the Symptom Checklist-Revised (SCL-90-R; Derogatis et al., 1976). This measure assesses psychological symptoms in parents. Each item is rated on a 4-point scale ranging from 0 (not at all distressed) to 4 (extremely distressed) for symptoms experienced over the past week. The Global Severity Index was used in this study, with higher scores indicating higher global distress (α = .98).
General Parenting Stress
Subscales from the Parenting Stress Index (Abidin, 1990) were used to assess parenting stress (e.g., stress an individual experiences as a direct result of being a parent). The current study used three parenting subscales: Perceived Parental Competence, Restriction of Role, and Social Isolation. A total parenting general parenting stress score was computed, with higher scores on this measure indicating higher reported parenting stress (α = .62).
SB-Specific Parenting Stress
Parents completed a modification of the Family Stress Scale (FSS; Quittner et al., 1990), a 19-item scale assessing general and condition-specific stressors in families of a child with SB. Items are rated on a 5-point Likert scale (1 = “not at all stressful” and 5 = “extremely stressful”). The current study used a total score comprised of the six condition-specific items with higher total scores indicating higher levels of SB-specific parenting stress (α = .83).
Parent Measures: Perceptions, Attitudes, and Behaviors
Parental Perceptions of Child Vulnerability
The 16-item Vulnerable Child Scale (Perrin et al., 1989) is a modified version of Forsyth’s Child Vulnerability Scale (Forsyth, 1987). The current study employed a 15-item version; the item “I sometimes worry that my child will die” was dropped due to the pediatric nature of the study population. Parents responded to each item on a 4-point scale (1 = definitely true, 4 = definitely false; α = .80).
Parental Illness Uncertainty
Parents completed the Parents’ Perception of Uncertainty in Illness Scale, which was adapted from the Mishel Uncertainty in Illness Scale and measures a parents’ evaluation of their uncertainty experienced concerning their child’s medical condition (Mishel, 1983), on a 5-point Likert scale (5 = Strongly Agree, 1 = Strongly Disagree; α = .88).
Parental Overprotection
Parents completed the Parent Protection Scale (Thomasgard et al., 1995), a 25-item self-rating scale that assesses parenting behaviors across the subscales of Supervision, Dependence, Separation Problems, and Control (a total score was used). Each item is rated on a 4-point Likert scale (ranging from 0 = never to 3 = always) and higher total scores represent greater levels of protection (α = .70).
Parental Optimism
Parents completed the Life Orientation Test—Revised (Herzberg et al., 2006; Scheier et al., 1994), a 10-item self-report questionnaire that assesses traits of optimism and pessimism using a 5-point Likert scale (ranging from 1 = I Disagree a Lot to 5 = I Agree a lot). Only the three-item optimism factor was used in this study (α = .67).
Parental Expectations for the Future
Parental expectations for their children with SB’s future functioning were assessed using a measured designed for a previous study by the same principal investigator (Questions about the Future [QAF] described in Holbein et al., 2017). Parents rated the extent to which they believed their children would be capable of attaining specific adulthood milestones (e.g., attaining a full-time job, living independently, marriage, parenthood) on a 4-point Likert scale (ranging from 1 = very unlikely to 4 = very likely). Higher scores indicated higher parental expectations for campers’ futures (α = .95).
Statistical Analysis
Data were analyzed using SPSS for Windows (V. 26) and Mplus (V 8.1). Prior to hypothesis testing, the psychometric properties (e.g., alphas, skewness) of all measures were evaluated. Additionally, to provide a broad understanding of the relations among study variables, a series of Pearson correlations will be performed. In an effort to maximize sample size (by limiting the number of participants removed from analyses due to missing data via listwise deletion), proposed covariates with non-significant cross-sectional associations with the study’s outcome variables were excluded from subsequent analyses. For Objective 1, a series of hierarchical multiple regression analyses were conducted to examine associations between all parent variables and youth self-management variables at Year 1, Time 1 (see Figure 1). Independent variables were entered in the following order: (Step 1) demographic covariates; (Step 2) parent adjustment or perceptions, attitudes, and behaviors. For Objective 2, the analyses were the same as for Objective 1; however, to examine changes within the same summer, residual scores were created by controlling for Time 1 of the dependent variable, and these residuals were used as the dependent variable in subsequent analyses.
Finally, for Objective 3, to examine individual trajectories of youth self-management variables (independence in completing SB-related tasks, mastery over self-management skills) with parent variables as predictors of these trajectories, multilevel modeling was conducted with Mplus (Muthen & Muthen, 1998–2017). This approach was deemed to be the most appropriate for this study’s longitudinal data for two reasons: (a) multilevel modeling in Mplus allows for variability in intervals between measurements (e.g., assessments do not need to be completed at regular intervals) and (b) multi-level modeling can utilize maximum likelihood estimation to manage missing data (Gray et al., 2018). These analyses utilized all available data (including campers who only participated for one summer) from four assessment time points across both years of data collection: Year 1, Time 1; Year 1, Time 3; Year 2, Time 1; Year 2, Time 3. Prior to completion of these analyses, the variable of camper age was centered around the mean (12.2 years). A multistep approach was used when applying multilevel modeling to the data. First, a null model was built to determine if the data were appropriate for multilevel modeling. Next, linear and quadratic models were created with self-management variables (independence in completing self-management tasks, mastery over condition-related tasks) at each time point entered as the dependent variable, time entered as within-subjects Level 1 variable, and demographic covariates (IQ, lesion level, camper age, income, years of prior camp participation) and parent factors at Year 1 Time 1 entered as between-subjects Level 2 variables. Fit indices were compared across equivalent models to identify the model that best fit the data.
Results
Preliminary Analyses
All variables were examined for outliers, but none were identified. Additionally, all independent and dependent variables were tested for skewness. A conservative approach to identifying skewness was used; variables were considered skewed and transformed if skewness values were greater than 1.0 (Tabachnick & Fidell, 2013). Results indicated that two variables were positively skewed: parent-report on the SCL-90 (skewness value = 3.02) and parent-report on the FSS (skewness value = 1.11). One variable, parent-report on the QAF, was found to be negatively skewed (skewness value = –1.17). Scoring on this variable was reversed prior to using data transformation techniques. All three of these variables were first transformed using square root transformations; however, they continued to be skewed significantly. These variables were transformed using log transformations and were found to be acceptable.
Attrition Analyses
As was anticipated, not all families participated at all four data collection time points. As mentioned previously, 89 families participated for at least one time point and were included in this study (Figure 2). Of those 89 families, 25 (28.1%) completed Time 1 questionnaires only and 64 (71.9%) completed questionnaires at Time 1 and Time 3. Analyses revealed that families who participated at both time points reported significantly higher parent report of illness uncertainty [t(86) = 2.15, p < .05] than those who participated only at Time 1. Of the total sample, 48 families (53.9%) participated across two summers. There were no significant differences between families who participated for one or two summers on any of the covariate, independent, or dependent variables (all p’s > .05). For the second summer of data collection, 14 families (29.2%) participated at Time 1 only and 34 families (70.8%) participated at both Time 1 and Time 3. There were no significant differences between families who participated at one or both time points on any of the covariate, independent, or dependent variables (all p’s > .05).
To provide a broad understanding of the relations among study variables, a series of Pearson correlations were performed, and a correlation matrix was created (Table II). This matrix shows the correlations between covariates, independent variables, and dependent variables at Year 1 Time 1. Means and standard deviations for all variables at Year 1 Time 1 are also included in Table II.
. | 1 . | 2 . | 3 . | 4 . | 5 . | 6 . | 7 . | 8 . | 9 . | 10 . | 11 . | 12 . | 13 . | 14 . | 15 . |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1. IQ | 89.52 (17.00) | 2.24 (.46) | 12.20 (3.00) | 9.23 (5.82) | 2.67 (2.66) | .26 (.40) | 74.84 (7.26) | 11.41 (4.61) | 1.67 (.42) | 60.44 (16.65) | 1.01 (.27) | 11.65 (2.45) | 3.31 (.71) | 1.98 (.40) | .60 (.25) |
2. Lesion level (p) | .002 | 1 | |||||||||||||
3. Camper age (p) | –.16 | .006 | 1 | ||||||||||||
4. Family income (p) | .17 | .001 | –.03 | 1 | |||||||||||
5. Previous years at camp (p) | –.22* | .06 | .59** | –.11 | 1 | ||||||||||
6. Distress (p) | .20 | –.06 | .08 | –.18 | –.001 | 1 | |||||||||
7. Parenting stress (p) | –.03 | –.05 | –.08 | –.23 | –.11 | .30** | 1 | ||||||||
8. SB-specific parenting stress (p) | .07 | –.15 | –.02 | .07 | –.14 | .30** | .07 | 1 | |||||||
9. PPCV (p) | –.02 | –.15 | –.18 | –.17 | –.24* | .36** | .18 | .22* | 1 | ||||||
10. Illness uncertainty (p) | –.11 | –.10 | .07 | –.03 | –.03 | .23* | –.02 | .29** | .43** | 1 | |||||
11. Overprotection (p) | –.06 | –.07 | –.38** | –.10 | –.29** | .22 | .27* | .26* | .42** | .23* | 1 | ||||
12. Optimism (p) | .04 | .14 | –.10 | .08 | –.05 | –.38** | –.11 | –.23* | –.12 | –.24* | .02 | 1 | |||
13. Expectations for the future (p) | .35** | –.08 | –.25* | .13 | –.11 | –.15 | .05 | –.24* | –.26* | –.14 | –.06 | .21 | 1 | ||
14. Camper condition-related responsibility (p + c) | .11 | –.06 | .59** | –.05 | .40** | .04 | –.02 | –.14 | –.32** | –.06 | –.38** | .03 | .09 | 1 | |
15. Camper condition-related mastery (p) | .20 | .04 | .45** | –.15 | .49** | .02 | –.11 | –.17 | –.19 | –.06 | –.26* | .08 | .11 | .70** | 1 |
. | 1 . | 2 . | 3 . | 4 . | 5 . | 6 . | 7 . | 8 . | 9 . | 10 . | 11 . | 12 . | 13 . | 14 . | 15 . |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1. IQ | 89.52 (17.00) | 2.24 (.46) | 12.20 (3.00) | 9.23 (5.82) | 2.67 (2.66) | .26 (.40) | 74.84 (7.26) | 11.41 (4.61) | 1.67 (.42) | 60.44 (16.65) | 1.01 (.27) | 11.65 (2.45) | 3.31 (.71) | 1.98 (.40) | .60 (.25) |
2. Lesion level (p) | .002 | 1 | |||||||||||||
3. Camper age (p) | –.16 | .006 | 1 | ||||||||||||
4. Family income (p) | .17 | .001 | –.03 | 1 | |||||||||||
5. Previous years at camp (p) | –.22* | .06 | .59** | –.11 | 1 | ||||||||||
6. Distress (p) | .20 | –.06 | .08 | –.18 | –.001 | 1 | |||||||||
7. Parenting stress (p) | –.03 | –.05 | –.08 | –.23 | –.11 | .30** | 1 | ||||||||
8. SB-specific parenting stress (p) | .07 | –.15 | –.02 | .07 | –.14 | .30** | .07 | 1 | |||||||
9. PPCV (p) | –.02 | –.15 | –.18 | –.17 | –.24* | .36** | .18 | .22* | 1 | ||||||
10. Illness uncertainty (p) | –.11 | –.10 | .07 | –.03 | –.03 | .23* | –.02 | .29** | .43** | 1 | |||||
11. Overprotection (p) | –.06 | –.07 | –.38** | –.10 | –.29** | .22 | .27* | .26* | .42** | .23* | 1 | ||||
12. Optimism (p) | .04 | .14 | –.10 | .08 | –.05 | –.38** | –.11 | –.23* | –.12 | –.24* | .02 | 1 | |||
13. Expectations for the future (p) | .35** | –.08 | –.25* | .13 | –.11 | –.15 | .05 | –.24* | –.26* | –.14 | –.06 | .21 | 1 | ||
14. Camper condition-related responsibility (p + c) | .11 | –.06 | .59** | –.05 | .40** | .04 | –.02 | –.14 | –.32** | –.06 | –.38** | .03 | .09 | 1 | |
15. Camper condition-related mastery (p) | .20 | .04 | .45** | –.15 | .49** | .02 | –.11 | –.17 | –.19 | –.06 | –.26* | .08 | .11 | .70** | 1 |
Note. Each cell underneath the diagonal indicates Pearson Correlation value (r). Values in the top row indicated means and standard deviations for each variable in the following format: M (SD).
Letters after variable name indicate reporters on variables: (p) = parent; (p + c) = parent and camper.
Correlation significant at .05 level.
Correlation is significant at .01 level.
. | 1 . | 2 . | 3 . | 4 . | 5 . | 6 . | 7 . | 8 . | 9 . | 10 . | 11 . | 12 . | 13 . | 14 . | 15 . |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1. IQ | 89.52 (17.00) | 2.24 (.46) | 12.20 (3.00) | 9.23 (5.82) | 2.67 (2.66) | .26 (.40) | 74.84 (7.26) | 11.41 (4.61) | 1.67 (.42) | 60.44 (16.65) | 1.01 (.27) | 11.65 (2.45) | 3.31 (.71) | 1.98 (.40) | .60 (.25) |
2. Lesion level (p) | .002 | 1 | |||||||||||||
3. Camper age (p) | –.16 | .006 | 1 | ||||||||||||
4. Family income (p) | .17 | .001 | –.03 | 1 | |||||||||||
5. Previous years at camp (p) | –.22* | .06 | .59** | –.11 | 1 | ||||||||||
6. Distress (p) | .20 | –.06 | .08 | –.18 | –.001 | 1 | |||||||||
7. Parenting stress (p) | –.03 | –.05 | –.08 | –.23 | –.11 | .30** | 1 | ||||||||
8. SB-specific parenting stress (p) | .07 | –.15 | –.02 | .07 | –.14 | .30** | .07 | 1 | |||||||
9. PPCV (p) | –.02 | –.15 | –.18 | –.17 | –.24* | .36** | .18 | .22* | 1 | ||||||
10. Illness uncertainty (p) | –.11 | –.10 | .07 | –.03 | –.03 | .23* | –.02 | .29** | .43** | 1 | |||||
11. Overprotection (p) | –.06 | –.07 | –.38** | –.10 | –.29** | .22 | .27* | .26* | .42** | .23* | 1 | ||||
12. Optimism (p) | .04 | .14 | –.10 | .08 | –.05 | –.38** | –.11 | –.23* | –.12 | –.24* | .02 | 1 | |||
13. Expectations for the future (p) | .35** | –.08 | –.25* | .13 | –.11 | –.15 | .05 | –.24* | –.26* | –.14 | –.06 | .21 | 1 | ||
14. Camper condition-related responsibility (p + c) | .11 | –.06 | .59** | –.05 | .40** | .04 | –.02 | –.14 | –.32** | –.06 | –.38** | .03 | .09 | 1 | |
15. Camper condition-related mastery (p) | .20 | .04 | .45** | –.15 | .49** | .02 | –.11 | –.17 | –.19 | –.06 | –.26* | .08 | .11 | .70** | 1 |
. | 1 . | 2 . | 3 . | 4 . | 5 . | 6 . | 7 . | 8 . | 9 . | 10 . | 11 . | 12 . | 13 . | 14 . | 15 . |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
1. IQ | 89.52 (17.00) | 2.24 (.46) | 12.20 (3.00) | 9.23 (5.82) | 2.67 (2.66) | .26 (.40) | 74.84 (7.26) | 11.41 (4.61) | 1.67 (.42) | 60.44 (16.65) | 1.01 (.27) | 11.65 (2.45) | 3.31 (.71) | 1.98 (.40) | .60 (.25) |
2. Lesion level (p) | .002 | 1 | |||||||||||||
3. Camper age (p) | –.16 | .006 | 1 | ||||||||||||
4. Family income (p) | .17 | .001 | –.03 | 1 | |||||||||||
5. Previous years at camp (p) | –.22* | .06 | .59** | –.11 | 1 | ||||||||||
6. Distress (p) | .20 | –.06 | .08 | –.18 | –.001 | 1 | |||||||||
7. Parenting stress (p) | –.03 | –.05 | –.08 | –.23 | –.11 | .30** | 1 | ||||||||
8. SB-specific parenting stress (p) | .07 | –.15 | –.02 | .07 | –.14 | .30** | .07 | 1 | |||||||
9. PPCV (p) | –.02 | –.15 | –.18 | –.17 | –.24* | .36** | .18 | .22* | 1 | ||||||
10. Illness uncertainty (p) | –.11 | –.10 | .07 | –.03 | –.03 | .23* | –.02 | .29** | .43** | 1 | |||||
11. Overprotection (p) | –.06 | –.07 | –.38** | –.10 | –.29** | .22 | .27* | .26* | .42** | .23* | 1 | ||||
12. Optimism (p) | .04 | .14 | –.10 | .08 | –.05 | –.38** | –.11 | –.23* | –.12 | –.24* | .02 | 1 | |||
13. Expectations for the future (p) | .35** | –.08 | –.25* | .13 | –.11 | –.15 | .05 | –.24* | –.26* | –.14 | –.06 | .21 | 1 | ||
14. Camper condition-related responsibility (p + c) | .11 | –.06 | .59** | –.05 | .40** | .04 | –.02 | –.14 | –.32** | –.06 | –.38** | .03 | .09 | 1 | |
15. Camper condition-related mastery (p) | .20 | .04 | .45** | –.15 | .49** | .02 | –.11 | –.17 | –.19 | –.06 | –.26* | .08 | .11 | .70** | 1 |
Note. Each cell underneath the diagonal indicates Pearson Correlation value (r). Values in the top row indicated means and standard deviations for each variable in the following format: M (SD).
Letters after variable name indicate reporters on variables: (p) = parent; (p + c) = parent and camper.
Correlation significant at .05 level.
Correlation is significant at .01 level.
Primary Analyses
Based on the results of Pearson correlations among this study’s proposed covariates, independent, and dependent variables presented (Table II), some changes were made to the originally proposed analytic plan. In an effort to maximize sample size (by limiting the number of participants removed from analyses due to missing data via listwise deletion) and due to their lack of significant cross-sectional associations with the outcome variables, the proposed covariates of camper IQ, lesion level, and family income were excluded from this study’s primary analyses. Camper age and previous years attending camp were included in analyses as covariates, and camper age was examined as a moderator of significant effects.
Objective 1: Condition-Related Responsibility
Based on cross-sectional regression analyses (Table III), parental distress (β = .12, p = .23), general parenting stress (β = .01, p = .93), and SB-specific parenting stress (β = –.12, p = .20) were not significantly associated with youth’s condition-related responsibility. Parental expectations for the future were significantly associated with youth’s condition-related responsibility (β = .63, p < .01), such that higher expectations for the future were related to greater youth responsibility for condition-related tasks. No other parental perceptions, attitudes, or behaviors were significantly associated with youth’s condition-related responsibility.
. | Condition-related responsibility . | Condition-related mastery . | ||||||
---|---|---|---|---|---|---|---|---|
Variable . | Step . | b . | β . | ΔR2 . | Step . | b . | β . | ΔR2 . |
Camper age | 1 | .07 | .55 | .41** | 1 | .02 | .19 | .32** |
Previous years at camp | .02 | .14 | .04 | .44 | ||||
SB-specific parenting stress | 2 | –.30 | –.12 | .01 | 3 | –.14 | –.09 | .01 |
Parental distress | 3 | .09 | .12 | .01 | 2 | .04 | .09 | .01 |
General parenting stress | 4 | .00 | .01 | .00 | 4 | –.01 | –.09 | .01 |
Camper age | 1 | .07 | .54 | .38** | 1 | .02 | .23 | .32** |
Previous years at camp | .02 | .13 | .04 | .40 | ||||
Parental expectations for the future | 2 | .63 | .26 | .06** | 2 | .33 | .22 | .04* |
PPCV | 3 | –.13 | –.13 | .01 | 5 | .04 | .06 | .00 |
Parental overprotection | 4 | –.11 | –.08 | .01 | 6 | –.05 | –.05 | .01 |
Parental optimism | 5 | –.01 | –.03 | .00 | 3 | .01 | .09 | .01 |
Parental illness uncertainty | 6 | –.00 | –.02 | .00 | 4 | –.01 | –.06 | .00 |
. | Condition-related responsibility . | Condition-related mastery . | ||||||
---|---|---|---|---|---|---|---|---|
Variable . | Step . | b . | β . | ΔR2 . | Step . | b . | β . | ΔR2 . |
Camper age | 1 | .07 | .55 | .41** | 1 | .02 | .19 | .32** |
Previous years at camp | .02 | .14 | .04 | .44 | ||||
SB-specific parenting stress | 2 | –.30 | –.12 | .01 | 3 | –.14 | –.09 | .01 |
Parental distress | 3 | .09 | .12 | .01 | 2 | .04 | .09 | .01 |
General parenting stress | 4 | .00 | .01 | .00 | 4 | –.01 | –.09 | .01 |
Camper age | 1 | .07 | .54 | .38** | 1 | .02 | .23 | .32** |
Previous years at camp | .02 | .13 | .04 | .40 | ||||
Parental expectations for the future | 2 | .63 | .26 | .06** | 2 | .33 | .22 | .04* |
PPCV | 3 | –.13 | –.13 | .01 | 5 | .04 | .06 | .00 |
Parental overprotection | 4 | –.11 | –.08 | .01 | 6 | –.05 | –.05 | .01 |
Parental optimism | 5 | –.01 | –.03 | .00 | 3 | .01 | .09 | .01 |
Parental illness uncertainty | 6 | –.00 | –.02 | .00 | 4 | –.01 | –.06 | .00 |
Note. All predictor and outcome variables are measured at Time 1, and separate regressions were run for two blocks of predictors (Block 1: adjustment variables, Block 2: perceptions/attitudes). For all analyses, the covariates of camper age and previous years at camp were entered in Step 1. PPCV = Parental perceptions of child vulnerability.
p < .05, **p < .01.
. | Condition-related responsibility . | Condition-related mastery . | ||||||
---|---|---|---|---|---|---|---|---|
Variable . | Step . | b . | β . | ΔR2 . | Step . | b . | β . | ΔR2 . |
Camper age | 1 | .07 | .55 | .41** | 1 | .02 | .19 | .32** |
Previous years at camp | .02 | .14 | .04 | .44 | ||||
SB-specific parenting stress | 2 | –.30 | –.12 | .01 | 3 | –.14 | –.09 | .01 |
Parental distress | 3 | .09 | .12 | .01 | 2 | .04 | .09 | .01 |
General parenting stress | 4 | .00 | .01 | .00 | 4 | –.01 | –.09 | .01 |
Camper age | 1 | .07 | .54 | .38** | 1 | .02 | .23 | .32** |
Previous years at camp | .02 | .13 | .04 | .40 | ||||
Parental expectations for the future | 2 | .63 | .26 | .06** | 2 | .33 | .22 | .04* |
PPCV | 3 | –.13 | –.13 | .01 | 5 | .04 | .06 | .00 |
Parental overprotection | 4 | –.11 | –.08 | .01 | 6 | –.05 | –.05 | .01 |
Parental optimism | 5 | –.01 | –.03 | .00 | 3 | .01 | .09 | .01 |
Parental illness uncertainty | 6 | –.00 | –.02 | .00 | 4 | –.01 | –.06 | .00 |
. | Condition-related responsibility . | Condition-related mastery . | ||||||
---|---|---|---|---|---|---|---|---|
Variable . | Step . | b . | β . | ΔR2 . | Step . | b . | β . | ΔR2 . |
Camper age | 1 | .07 | .55 | .41** | 1 | .02 | .19 | .32** |
Previous years at camp | .02 | .14 | .04 | .44 | ||||
SB-specific parenting stress | 2 | –.30 | –.12 | .01 | 3 | –.14 | –.09 | .01 |
Parental distress | 3 | .09 | .12 | .01 | 2 | .04 | .09 | .01 |
General parenting stress | 4 | .00 | .01 | .00 | 4 | –.01 | –.09 | .01 |
Camper age | 1 | .07 | .54 | .38** | 1 | .02 | .23 | .32** |
Previous years at camp | .02 | .13 | .04 | .40 | ||||
Parental expectations for the future | 2 | .63 | .26 | .06** | 2 | .33 | .22 | .04* |
PPCV | 3 | –.13 | –.13 | .01 | 5 | .04 | .06 | .00 |
Parental overprotection | 4 | –.11 | –.08 | .01 | 6 | –.05 | –.05 | .01 |
Parental optimism | 5 | –.01 | –.03 | .00 | 3 | .01 | .09 | .01 |
Parental illness uncertainty | 6 | –.00 | –.02 | .00 | 4 | –.01 | –.06 | .00 |
Note. All predictor and outcome variables are measured at Time 1, and separate regressions were run for two blocks of predictors (Block 1: adjustment variables, Block 2: perceptions/attitudes). For all analyses, the covariates of camper age and previous years at camp were entered in Step 1. PPCV = Parental perceptions of child vulnerability.
p < .05, **p < .01.
Camper age was examined as a moderator of the relationships between parent factors and camper condition-related responsibility. There were no significant interactions between camper age and any of the three parent adjustment factors or camper age and PPCV, overprotection, illness uncertainty, or optimism (all p’s > .05). The interaction between camper age and parental expectations for the future was significant (β = .20, p < .05). Post hoc probing revealed that there was not a significant relationship between parental expectations for the future and youth’s condition-related responsibility for younger campers (β = .16, p = .19), but that this relationship was significant for parents of older campers (β = .36, p < .01; Figure 4). In other words, higher reported expectations were associated with higher levels of responsibility, but only for older campers.
Objective 1: Condition-Related Task Mastery
Parent adjustment variables were not significantly associated with youth’s condition-related mastery (distress: β = .09, p = .36; general parenting stress: β = –.09, p = .40; SB-specific parenting stress: β = –.09, p = .41). With camper age and previous years at camp included as covariates, parental expectations for the future were found to be significantly associated with campers’ mastery over condition-related tasks (β = .22, p < .05). Parents who reported greater expectations for campers’ futures also reported higher levels of camper mastery over condition-related tasks. No other parent perceptions, attitudes, or behaviors were significantly associated with campers’ condition-related master.
Again, camper age was examined as a moderator of the relationships between parent factors and youth condition-related mastery. There were no significant interactions between camper age and any of the three parent adjustment factors or camper age and PPCV, overprotection, illness uncertainty, or optimism (all p’s > .05). The interaction between camper age and parental expectations for the future was significant (β = .24, p < .05). As with condition-related responsibility, for older campers, higher reported expectations were associated with higher levels of condition-related mastery (see Figure 4).
Objective 2: Condition-Related Responsibility
Parental distress (β = –.01, p = .94), general parenting stress (β = .08, p = .58), and SB-specific parenting stress (β = .14, p = .35) were not significantly associated with changes in youth’s condition-related responsibility. Furthermore, none of the parental perceptions/attitudes/behaviors were significantly associated with youth’s condition-related responsibility. Age was examined as a moderator of the relationships between parent factors and changes in youth condition-related responsibility. There were no significant age × parent factor interactions (all p’s > .05).
Objective 2: Condition-Related Mastery
Parental distress (β = –.18, p = .25), general parenting stress (β = .13, p = .36), and SB-specific parenting stress (β = –.17, p = .26) were not significantly associated with changes in camper mastery over condition-related tasks. Similar analyses were completed using parental perceptions/attitudes/behaviors as independent variables. Parental expectations for the future were found to be significantly associated with changes in campers’ condition-related mastery (β = .35, p < .01). When parents reported greater expectations for the future, campers exhibited larger increases in reported mastery following participation in the intervention. Other parental perceptions/attitudes/behaviors were not associated with changes in condition-related task mastery. Also, there were no significant age × parent factor interactions.
Objective 3: Condition-Related Responsibility
The third objective of this study was to examine trajectories of the youth self-management variables (independence in completing SB-related tasks, mastery over self-management skills) over the course of two summers, with parent variables as predictors of these trajectories. This was accomplished using multilevel modeling in Mplus. Models were examined for goodness of fit using the following criteria: for a good fitting model, the robust Satorra–Bentler scaled chi-square statistic should be significant, RMSEA should be <.06, SRMR should be <.08, and CFI and TLI should be > .95 (Kline, 2006).
The null latent growth curve model for condition-related responsibility was found to provide adequate fit, such that families tended to report increases in campers’ responsibility over time (from Year 1 Time 1 to Year 2 Time 3). The mean intercept was 1.98 (SE = .04, p < .001), and the mean slope was .25 (SE = .04, p < .001). An additional model was built including only the initially proposed covariates (camper age, IQ, lesion level, family income, and prior years at camp) in the model. There were significant paths from age (β = .07, p < .001) and IQ (β = .01, p < .05) to the intercept, indicating that campers with higher ages and IQs had higher initial levels of responsibility. None of the covariates were significantly related to the slope. Two additional models were created to examine parent adjustment and parent perception/attitude variables as predictors of change in campers’ condition-related responsibility over time. No predictors were significantly associated with the intercept; however, the path from PPCV to the slope was significant (β = –.01, p < .05). That is, when parents reported higher levels of PPCV, the slope of the line of growth over time was less steep (e.g., campers acquired responsibility at a slower rate).
Objective 3: Condition-Related Mastery
The null latent growth curve model for condition-related mastery was found to fit at the linear level. Overall, families tended to report increases in campers’ condition-related mastery over time (from Year 1 Time 1 to Year 2 Time 3). The mean intercept was .61 (SE = .03, p < .001), and the mean slope was .03 (SE = .004, p < .001). An additional model was built including only the initially proposed covariates (camper age, IQ, lesion level, family income, and prior years at camp) in the model. There were significant paths from age (β = .02, p < .05), IQ (β = .094, p < .01), and prior years at camp (β = .04, p < .001) to the intercept. This indicated that older campers, those with higher IQs, and those who had more years of previous camp participation had higher initial levels of mastery. There were also significant paths from age (β = –.003, p < .05) and family income (β = .002, p < .05) to the slope, indicating that younger campers and those from families of higher SES acquired mastery over condition-related tasks at a higher rate. All of the initially proposed covariates were included in subsequent models, as multi-level modeling eliminated concerns about missing data/listwise deletion. For parent adjustment and parent perception/attitude/behavior variables as predictors of change in campers’ condition-related mastery over time, the path from expectations for the future to the slope was significant (β = .05, p < .05). When parents reported greater expectations for the future, the slope of the line of growth over time was steeper (e.g., campers mastery increased more quickly).
Discussion
Many pediatric health conditions, including SB, require lifelong adherence to a medical regimen (Modi et al., 2012). The development and maintenance of self-management behaviors for youth with these conditions are important steps toward independence (Bakaniene et al., 2018). However, the acquisition of condition-related skills and the transfer of condition-related responsibilities from caregivers to individuals with SB are often challenging processes. The purpose of the current study was, broadly, to identify parent factors that may affect the development of condition-related autonomy for youth with SB. This study examined the relationships among parent personal adjustment factors, parental perceptions/attitudes/behaviors, and youth condition-related responsibility and mastery cross-sectionally and longitudinally in the context of a summer camp independence-related intervention study.
A number of significant relationships between the parent factors and youth self-management variables were identified, and these will be discussed below. However, first, it should be noted that, though conceptualized as separate constructs, the dependent self-management variables of condition-related responsibility and condition-related mastery were highly positively correlated. Furthermore, growth analyses indicated that youth with SB’s condition-related responsibility and mastery each increased over time for many youth. This set of findings indicates that youth with greater levels of responsibility also had higher levels of mastery over condition-related tasks. These results are promising, because increase in responsibility without increase in skill may lead to poor adherence (Psihogios et al., 2015) and, subsequently, the occurrence of secondary medical complications. Given their conceptualization as unique constructs, findings for condition-related responsibility and mastery will be discussed individually below. However, findings should be interpreted and applied in the context of this significant relationship between these two self-management outcome variables.
There were several significant findings for the parent perception of expectations for the future, including significant findings in cross-sectional, longitudinal (over one summer), and growth (across two summers) analyses. In the cross-sectional analyses, parental expectations for the future were significantly associated with both youth with SB’s condition-related responsibility and mastery. Moreover, this relationship was moderated by camper age—when parents of older campers held higher expectations for campers’ milestone attainment—campers also had greater responsibility and parents reported higher mastery of condition-related skills. Additionally, higher parental expectations for the future were associated with larger increases over time in campers’ mastery over condition-related skills following participation in the camp intervention regardless of camper age. Furthermore, growth analyses revealed that when parents reported higher expectations for the future at baseline, youth’s mastery over SB-related tasks improved more rapidly. This relationship appears to be more robust for older campers, perhaps because these campers are closer to reaching the age at which some milestones are expected to be met.
One interpretation of these findings is that when parents expect their children to reach certain milestones, they likely create an environment that promotes the skills necessary to meet these milestones (e.g., by providing opportunities to practice skills, by utilizing a scaffolding approach; Winning et al., 2020). In line with this, youth’s mastery over condition-related tasks (e.g., clean intermittent catheterization, bowel programs) has been found to be significantly related to youth’s community participation (Bakaniene et al., 2018). Community participation can be considered a precursor to broader autonomy.
Overall, parents of young people with SB have actually been found to decrease their expectations for future milestone achievement over time (Holbein et al., 2017). This same pattern was observed with the current study’s data, as camper age was significantly negatively associated with parental expectations for the future cross-sectionally. Moreover, bivariate correlations in the current study found that camper IQ was significantly positively associated with parents’ expectations for the future; in past work, parents of youth with SB’s expectations for the future have been found to vary based on youth’s cognitive abilities (Holbein et al., 2017; Wasserman & Holmbeck, 2016). Future research should examine how youth’s cognitive abilities (including overall intellectual functioning, attention, executive functioning, and learning) are related to both parental expectations for their child’s future and youth with SB’s self-management behaviors. Executive dysfunction has been identified as a particularly important factor, both in terms of individuals with SB’s milestone achievement and self-management (Stern et al., 2018). A better understanding of the contributions of cognitive abilities to specific self-management behaviors and, ultimately, autonomy would be useful for the development of interventions tailored specifically to individuals with SB.
Interestingly, when parents reported higher levels of PPCV, youth with SB acquired condition-related skills at a slower rate. When parents perceive their children with SB to be more vulnerable, they may be hesitant to allow them to take responsibility for condition-related tasks. This finding is line with the study’s hypotheses and previous research. In fact, in another longitudinal study with families of youth with SB, based on a different data set, higher maternal PPCV was associated with lower subsequent levels of youth condition-related responsibility (Driscoll et al., 2020).
Though not examined in the current study, it is possible that the relationships between these parent perceptions and youth self-management are bidirectional. There are a number of other condition-related factors that contribute to youth with SB’s potential for condition-related independence, including attention abilities, executive functioning, gross motor functioning, and fine motor coordination (Copp et al., 2015; Stern et al., 2018). Campers with dysfunction in these areas may struggle to master condition-related skills and assume responsibility for condition-related tasks, and, subsequently, their parents may have lowered expectations for campers’ future milestone achievement or perceive them to be increasingly vulnerable. It is also possible that when parents have higher expectations for campers, the campers may have higher expectations for themselves. Campers may then have higher levels of intrinsic motivation (internal drive to perform an activity for its inherent interest and enjoyment) to utilize opportunities, such as those presented at camp, to improve their condition-related skills (Zukerman et al., 2011). Future research is needed to better understand all factors that contribute to these, likely bidirectional, relationships.
Across all analyses, the three parent adjustment factors (distress, general parenting stress, SB-specific parenting stress) were not significantly associated with youth self-management variables. Previous research with youth with SB has found that youth are more passive and less actively involved during family discussions (Holmbeck et al., 2002). It is possible that youth with SB’s unique interpersonal/interaction style protects them from the potential negative impact of poor parental adjustment. It is notable that the baseline levels of distress, general parenting stress, and SB-specific parenting stress reported by parents in this particular study were lower than is typically found in this population. It is possible that the parents of campers with SB included in this study did not experience the challenges with adjustment that have been reported by other parents of youth with SB (Vermaes et al., 2005) or that these parents have found adaptive ways to manage distress and stress. Alternatively, it is possible that parental distress and parenting stress decreased as a result of camp itself. For example, parents may experience some relief at the start of camp knowing that they will have fewer responsibilities for the week and this may affect their report on the measures of adjustment used in this study.
Many of the study’s analyses examining change over a single summer were non-significant. Specifically, parent factors were not related to changes in youth responsibility for condition-related tasks or health-related goal achievement following participation in the camp-based intervention. While these outcome variables were both found to increase significantly from pre- to post-camp, the hypothesized parent factors were not significantly related to these changes over a single summer. It is possible that, because changes in youth with SB’s behavior occurred in the summer camp setting (e.g., away from their parents with repeated reinforcement and assistance with goal-directed problem solving from an alternate caregiver [e.g., camp counselor]), the proposed parent factors were unrelated to gains made. It is also possible that youth with SB’s uniquely passive interpersonal style observed in the home (Holmbeck et al., 2002; Lennon et al., 2015) allowed them to make gains in responsibility and goal achievement following camp regardless of parent characteristics. Future research should explore other camper-, parent-, and family-level variables that may affect campers’ response to the summer camp-based intervention.
Limitations and Future Directions
There are limitations to be considered when interpreting the results of this study. First, there is potential for sample bias, as the families were self-selected participants at a summer camp. Information about the families who declined to participate (17 per summer) is unavailable. It is possible, for example that the families who declined were experiencing increased stress, further biasing the study’s results. Second, due to a high number of repeat (vs. new) campers in the second summer, the overall sample size was smaller than anticipated and may have limited the ability to detect significant effects (specifically for Objective 2). Third, it is possible that common-method variance contributed to some significant findings in this study, as parents provided self-report data for most of the study’s variables. Future research could utilize additional reporters (e.g., camp staff) when assessing condition-related responsibility and mastery. Fourth, for the analyses involving a single summer, the time between assessments (1 month) may not have been long enough to detect significant effects, especially given the time of year that the study was completed, as many families are not following their typical routines during the summertime. Future research with a larger sample size in a more generalizable setting could address these limitations.
The results of the current study identify areas for future research. Future work could expand on this study as discussed previously (e.g., by using a larger sample size, assessing mothers and fathers of youth with SB separately, considering the different neuropsychological domains and/or other external factors that may impact both parent factors and youth self-management, including additional reporters [e.g., camp staff]). Additionally, it would be beneficial for future research to explore the potential bidirectional relationships between this study’s parent factors and self-management.
Clinical Implications
The results of the current study also have important implications for work with families of youth with SB. Parental expectations for the future and PPCV have been identified as potential targets for assessment by SB health-care providers, as they have the potential to affect SB outcomes, including aspects of self-management. Further these perceptions, attitudes, and behaviors are also potential targets for parent- and family-based interventions. Given the heterogeneous nature of the complications and medical sequelae associated with SB, it would be difficult to design a “one-size-fits-all” intervention. However, this study highlights the potential benefits of the following types of interventions: (a) parent-focused cognitive behavioral interventions targeting potentially maladaptive thoughts/perceptions and unhelpful behaviors (e.g., Levy et al., 2016); (b) youth-focused problem-solving interventions (e.g., the camp intervention described in this study); and (c) family-focused strengths-based problem-solving interventions (e.g., Narad et al., 2019).
Acknowledgments
This work is based on the first author’s dissertation project (Driscoll, 2020) and was conducted under the supervision of Grayson N. Holmbeck, PhD. The authors would like to thank Kiwanis Neuroscience Research Foundation: Illinois-Eastern Iowa District of Kiwanis International, Camp Independence, YMCA Camp Duncan, the Illinois Spina Bifida Association, and the undergraduate and graduate research assistants who worked on this study. The authors would also like to extend their appreciation to the campers and parents who contributed their time and effort to this study.
Funding
This work was supported in part by a research grant from the Kiwanis Neuroscience Research Foundation: Illinois-Eastern Iowa District of Kiwanis International.
Conflicts of interest: None declared.