This is the first study to use an illness-related measure of parenting stress to describe the perceived frequency and difficulty of stressful events experienced by caregivers of adolescents receiving outpatient care for IBD. As hypothesized and compared to older caregivers, younger caregivers more often reported parenting stressors, such as managing worry, making frequent decisions about their adolescent’s medical care, communicating difficulties specific to IBD management, and fulfilling typical caregiving responsibilities. When individual parenting stress subscales were examined, communication between caregivers and both health care providers and family was identified as a particularly stressful domain for younger caregivers. These findings may be a function of younger caregivers having had fewer experiences parenting an adolescent, particularly with stressful disease-related issues, which may be heightened when families are adjusting to a new diagnosis, experiencing changes in treatment regimens, undergoing procedures, and/or navigating a complex medical system.
The link between caregiver age and parenting stress replicates prior data within paediatric cancer (Streisand et al. 2001
), but not within diabetes (Streisand et al. 2005
). Streisand and colleagues (2001)
speculated that younger caregivers likely have fewer resources and less experience, and thus perceive greater parenting stress. While lack of financial resources was likely not a contributor to parenting stress given the higher income reported by this sample, although not assessed, fewer psychosocial resources (e.g., social support, coping) may contribute to the elevated levels of parenting stress for younger caregivers.
Caregivers of adolescents with IBD generally reported significantly lower rates of parenting stress compared to other paediatric chronic conditions. Given their higher rates of psychopathology compared to caregivers of youth with other chronic conditions (Engstrom 1991
; Engstrom 1999
), this finding was somewhat unexpected. Lower rates of parenting stress within IBD could also be reflective of most adolescents having inactive or mild disease activity, which is common for those adolescents receiving outpatient treatment (Mackner & Crandall 2005b
; Hommel et al. 2008
). However, inactive or mild disease phases for many patients still include multiple daily medication doses, intermittent symptoms, attendance at routine clinic appointments, and dietary modifications. Significant differences between parenting stress in the IBD and cancer and BE samples are not surprising. Paediatric cancer is often perceived as a life-threatening condition and BE often involves multiple invasive surgical procedures with long-term sequelae (i.e., urinary incontinence, daily catheterization), whereas IBD is often viewed as an unpredictable, yet manageable condition. Furthermore, the BE sample was comprised of younger patients, which is consistent with previous literature suggesting that parenting stress is greater amongst parents with younger children (Streisand et al. 2001
Examination of IBD-specific factors may provide insight into the lower rates of parenting stress detected. Youth with IBD have been found to report significantly fewer stressful life events than healthy children (Gitlin et al. 1991
) and use more avoidant coping strategies (Gitlin et al. 1991
; van der Zaag-Loonen et al. 2004
), which may be secondary to the potentially embarrassing and socially limiting symptoms characteristic of IBD. When coupled with speculation that caregivers of youth with IBD may have a tendency to isolate feelings or worry about disease progression (Engstrom 1999
), fewer parenting stressors may be reported. Additionally, the sociodemographic data that characterize the current IBD sample (i.e., primarily Caucasian, well-educated caregivers, intact families of higher SES) (Greenley & Cunningham 2009
) is comparable to the sociodemographics of the diabetes sample (Streisand et al. 2005
). Caregivers within these samples may have greater access to financial resources, which may serve as protective factors and aid in promoting more optimal stress management. Sociodemographics, such as ethnicity and SES, may also explain the higher rates of parenting stress identified in the SCD and obesity samples, which included primarily single-parent, ethnic minority caregivers of lower SES status.
Our cross-sectional study design and small sample size precludes any temporal ordering of associations between parenting stress and sociodemographic data. The limited sociodemographic variability within IBD (Blanchard et al. 2001
; Greenley & Cunningham 2009
) may limit the ability to detect sociodemographic correlates of parenting stress. Although disease duration was unknown, parenting stressors may be more common during adolescence given that diagnosis often occurs during this developmental period. As such, time of diagnosis may influence parenting stress. Parenting stress may also be more elevated during active disease phases. Lower rates of parenting stress may have been captured in the current study given that most participants were experiencing mild/inactive disease symptoms, although their treatment regimens still require active disease management. And finally, mothers and fathers were combined in the present sample given the small number of fathers who participated. Future studies may want to consider how mothers and fathers differentially respond to parenting stress when managing their youth’s IBD.
The examination of paediatric parenting stress addresses the need to better understand caregiver non-pathological adaptation to paediatric chronic illness management (Quittner et al. 2003
). As an illustration, although caregivers of youth with IBD report quality of life data suggesting that they are functioning generally well (Greenley & Cunningham 2009
), the current data indicates that illness-related stressors exist. However, the extent of impairment that these stressors impose on both caregiver and youth functioning remain empirical questions. Given the hallmark characteristic of recurrent episodes of IBD relapse and remission, parenting stress examined longitudinally and during different disease phases will aid in understanding parenting stress over time and how elevations may compromise salient issues, such as disease management (e.g., treatment adherence). To better understand why younger caregivers report greater parenting stress, future research should consider examination of other caregiver psychological constructs, such as caregiver coping strategies, that may serve as protective factors. Further examination of coping strategies used within the IBD population may also aid in understanding the lower rates of parenting stress detected in the current study. Study replication to determine the psychometric properties of the PIP within the IBD population will also be essential (e.g., construct validity). Given that clinical cut-offs for parenting stress have yet to be developed for the PIP, such data may aid in ascertaining the need for clinical interventions for parents experiencing elevated parenting stress that interferes with their ability to adequately manage their youth’s IBD regimen.
- Caregiver age may be an important correlate of paediatric parenting stress for caregivers of adolescents with inflammatory bowel disease (IBD) receiving outpatient treatment, as younger caregivers reported significantly higher rates of parenting stress with respect to frequency and communication than older caregivers.
- Caregivers within IBD reported significantly lower rates of paediatric parenting stress in both frequency and difficulty compared to caregivers of youth with cancer, obesity, sickle cell disease, bladder exstrophy, yet, have comparable rates to caregivers of youth with type 1 diabetes.
- The sociodemographic characteristics of IBD families (i.e., primarily Caucasian, well-educated, and higher socioeconomic status) may encourage greater access to financial and psychosocial resources, which may explain lower rates of parenting stress and aid in promoting more optimal stress management.