|Home | About | Journals | Submit | Contact Us | Français|
The psychosocial functioning of caregivers of adolescents managing inflammatory bowel disease (IBD) has been understudied; yet, poor caregiver functioning can place youth at risk for compromised disease management. The current study addressed this limitation by examining a sample of caregivers of adolescents with IBD. Study aims included: 1) document rates of paediatric parenting stress, 2) identify associated sociodemographic predictors of parenting stress, and 3) compare previously published rates of parenting stress to those within other paediatric chronic conditions, including cancer, type 1 diabetes, obesity, sickle cell disease, bladder exstrophy.
Caregivers of adolescents with an IBD diagnosis (Mage = 15.4±1.4, 44.4% female, 88.7% Caucasian) and receiving tertiary care within a gastroenterology clinic (N = 62) completed the Pediatric Inventory for Parents (PIP) as a measure of paediatric parenting stress with Frequency and Difficulty as PIP subscales. Paediatric gastroenterologists provided disease severity assessments.
Adolescents with IBD were experiencing relatively mild disease activity. Bivariate correlations revealed that PIP-Difficulty was positively associated with Crohn’s disease severity (r = 0.38, p < 0.01). Caregiver age was negatively associated with the frequency of parenting stress total (r = −.25, p = .05) and communication scores (r = −.25, p <.05). The frequency and difficulty of parenting stressors within the IBD sample were similar to rates within type 1 diabetes, but were significantly lower to rates identified in other paediatric chronic conditions.
Caregivers of adolescents with IBD seem to experience low rates of parenting stress when their adolescents are receiving outpatient care and during phases of IBD relative inactivity. The sociodemographic characteristics of IBD families (i.e., primarily Caucasian, well-educated, and higher socioeconomic status) likely encourage greater access to financial and psychosocial resources, which may aid in promoting more optimal stress management.
Crohn’s disease (CD) and ulcerative colitis (UC), known collectively as inflammatory bowel disease (IBD), are diagnosed during childhood or adolescence for approximately one-fourth of the IBD population with an incidence rate of 71 per 100,000 children in the United States (Kappelman et al. 2007) and international incidence rates increasingly rising (Benchimol et al. 2010). Management of IBD often involves both youth and their caregivers managing numerous potentially stressful and complex treatment aspects, which may include multiple medications, infusions, dietary/nutritional modifications, invasive procedures (i.e., colonoscopies, endoscopies), and surgical interventions, while continuing to experience intermittent episodes of relapse and remission.
Caring for youth with a chronic illness, such as IBD, encompasses balancing typical familial responsibilities (i.e., employment, finances) with disease-related tasks. Caregivers of youth with IBD often have to overcome challenges associated with following a multifaceted treatment regimen, manage unpredictable episodes of relapse and remission, cope with concerns about long-term consequences of IBD (e.g., colorectal cancer), have difficult discussions with youth about IBD (e.g., need for frequent restroom use during school), navigate and serve as advocate within a complex medical system, and manage personal emotions. These demands can be perceived by caregivers as overly burdensome and contribute to increased stress and poor adjustment. Yet, the psychosocial functioning of caregivers managing a child with IBD has been understudied. Most studies have primarily focused on psychopathological aspects of caregiver functioning, detecting higher rates of psychiatric symptoms in some maternal caregivers ((Burke et al. 1994; Engstrom 1991; Engstrom 1999). To date, only one study within the IBD literature has systemically assessed non-pathological responses to IBD management in caregivers (i.e, quality of life). Specifically, compared to a normative sample of adults, quality of life was comparable, but lower when disease severity was elevated (Greenley & Cunningham, 2009). Parenting stress is another non-pathological aspect of caregiver functioning that has yet to be examined within paediatric IBD.
Within other chronic conditions, parenting stress has been linked to poor caregiver psychological adjustment and compromised youth illness and psychosocial outcomes (Mullins et al. 2000; Streisand et al. 2005; Fredericks et al. 2007; Ohleyer et al. 2007). The Pediatric Inventory for Parents (PIP; Streisand et al. 2001) is a psychometrically valid assessment tool measuring parenting stress specific to caring for youth with a chronic condition. The PIP has been applied to several other conditions, including cancer (Streisand et al. 2001), type 1 diabetes (Streisand et al. 2005), obesity (Ohleyer et al. 2007), sickle cell disease (SCD; Logan et al. 2002), and bladder exstrophy (BE; Mednick et al. 2009). Yet, the extent to which caregivers of youth with IBD experience significant stress related to caring for their chronically ill child, along with the clinical usefulness of the PIP within IBD, are unknown.
The purpose of the current study was three-fold. Given the paucity of data on non-pathological aspects of caregiver functioning within IBD, the first two study aims were to document parenting stress as measured with the PIP and identify associated sociodemographic correlates within a sample of adolescents diagnosed with IBD. Based upon prior paediatric studies (Streisand et al. 2001; Streisand et al. 2005), increased parenting stress was hypothesized to be associated with lower caregiver and youth age, lower socioeconomic status (SES), and single-parent families. The final study aim was to conduct a preliminary investigation of PIP data published within the paediatric chronic condition literature by comparing rates of parenting stress in IBD to rates within other paediatric chronic conditions with published PIP data. Although disease-specific factors may impact parenting stress rates, understanding parenting stress in other chronic conditions, and its subsequent impact on disease management, may aid in conceptualizing caregiver functioning in paediatric IBD. Parenting stress within IBD was hypothesized to have comparable parenting stress rates.
Adolescents aged 13–17 years with a confirmed diagnosis of IBD and a prescribed treatment regimen of a 5-ASA medication and/or 6-MP/azathioprine were recruited for a larger study on behavioural functioning, treatment adherence, and disease outcomes in youth with IBD. Exclusion criteria included patients with a diagnosis of a neurocognitive disorder, comorbid chronic illness diagnosis, or lack of English fluency in both the adolescent and their caregiver. Eligibility included 106 patients of which 83 were able to be contacted for recruitment. Thirteen declined participation and 8 did not provide complete data. Reasons for declining participation were blood draw requirement for adolescent, not enough time, and/or not interested in participating in research. Thus, a final sample of 62 adolescents receiving treatment for IBD (CD n = 49; UC n = 13) and one of their caregivers participated in the current study. For the current sample, IBD-specific characteristics are outlined in Table 1 and sociodemographic characteristics in Table 2. No site differences were detected and the sample was generally representative of the paediatric IBD population (Mackner & Crandall 2005a; Greenley & Cunningham 2009).
Study recruitment occurred at two large paediatric medical centres in the Midwest (n = 28) and northeast (n = 34) United States. Study personnel identified adolescents meeting study inclusion criteria via chart review. Eligible families were contacted during regularly scheduled gastroenterology clinic appointments, scheduled Infliximab infusions, or via telephone and given a thorough study description. After parents verified inclusion/exclusion criteria, informed consent/assent was obtained from both the adolescents and their caregivers at the study visit and .participants were compensated $25 following study completion. Each adolescent’s gastroenterologist provided a disease severity assessment based upon the clinic appointment corresponding to the study visit or from the most recent clinic appointment. This study was approved by the hospitals’ Institutional Review Boards.
Caregivers completed a demographic questionnaire assessing family income, caregiver age, marital status, education, and number of family members in the home.
The PIP is a 42-item parent-report questionnaire using 5-point Likert scaling that measures both the frequency (PIP-F) and difficulty (PIP-D) of illness-related parenting stress across 4 factors: Communication, Medical Care, Role Functioning, and Emotional Distress. Adequate validity and internal consistency has been previously demonstrated (α = .80 – .96) (Streisand et al. 2001) and also confirmed within the current study for total scales (PIP-F, α = .96; PIP-D, α = .95) and subscale ranges (Medical Care Difficulty, α = .75 to Emotional Distress Frequency, α = .92).
The well-validated PCDAI (Hyams et al. 1991) assesses Crohn’s disease activity using both subjective (e.g., pain) and objective criteria (e.g., physical exam), laboratory findings, and growth parameters. Disease activity scores ranged from 0–100: < 10 = inactive; 10–29 = mild, and 30 ≤ = moderate/severe. Internal consistency was .95 in this sample.
Using both subjective and objective criteria, the LCAI (Lichtiger et al. 1994) assesses 8 UC symptoms (score 0–21): daily stool frequency, nocturnal diarrhoea, visible blood in stool, faecal incontinence, abdominal pain/cramping, general well-being, abdominal tenderness, and need for anti-diarrhoeal medication. Higher scores represent more severe disease. LCAI scores ≤ 2 indicate quiescent disease; < 10 indicate a response to therapy; ≥ 10 indicate active disease and no response to therapy (Fanjiang et al. 2007). Internal consistency was .85 in this sample.
Descriptive statistics were calculated to examine illness-related parenting stress in caregivers of adolescents with IBD. To assess for significant site and disease group differences on total parenting stress rates, Student’s t-tests were conducted. Given the potential for disease severity to impact caregiver reporting of parenting stress, Spearman correlations, due to disease severity skewness, were conducted to examine the associations between total parenting stress and disease severity within the IBD sub-types (CD, UC). Bivariate correlations, Student’s t-tests, and analyses of covariance (ANCOVA) were conducted to identify sociodemographic predictors of PIP-F and PIP-D, including caregiver age, SES, marital status, education, and adolescent age and gender. Caregiver education, marital status, and child ethnicity were dichotomized into college degree vs. no college degree, married vs. not married, and Caucasian vs. non-Caucasian. Given that the majority of the sample demonstrated inactive or mild disease severity, continuous ratings from the PCDAI and LCAI were summed and then combined to reflect an overall disease severity rating (Hommel et al. 2008), which was statistically controlled for in the ANCOVA. T-tests were then performed to compare the PIP scores within the IBD sample to scores from five previously published samples: cancer (Streisand et al. 2001), type 1 diabetes (Streisand et al. 2005), obesity (Ohleyer et al. 2007), SCD (Logan et al. 2002), and BE (Mednick et al. 2009). Subscale scores were only available for the cancer sample. Standardized effect sizes (Cohen’s d) were then estimated to determine the strength of sample group differences (Cohen 1992). To aid in comparing the various disease groups, sociodemographic information for each sample is provided in Table 2.
Descriptive statistics for parenting stress subscale and total scores are presented in Table 3. Student’s t-tests identified no significant site or disease group differences on the PIP-F and PIP-D.
Before disease severity was entered into the ANCOVA as a covariate, Spearman correlations revealed that CD severity was associated with PIP-D (rho = 0.38, p < 0.01) and PIP-F (rho = 0.30, p < 0.05). In the ANCOVA, parenting stress frequency and difficulty scores did not significantly vary by most caregiver (i.e., marital status, SES) or adolescent (i.e., age, gender) characteristics after controlling for disease severity, which reflected primarily inactive or mild disease status (see Table 1). Caregiver age was inversely related to PIP-F (r = −.25, p = .05), with younger caregivers reporting greater parenting stress frequency. This finding was also observed with the Communication-F subscale (r = −.25, p < .05). The association between caregiver education and parenting stress frequency approached significance (F = 2.69, p = .07). Caregivers with a 4-year college degree reported lower frequencies of parenting stress compared to caregivers without a 4-year college degree.
Parenting stress scores within IBD were generally lower than data obtained from caregivers of youth with other paediatric chronic conditions (see Table 3). Regarding the frequency of parenting stress, PIP-F scores obtained in the current study significantly differed from scores provided by caregivers of youth receiving treatment for cancer (d = −0.70), obesity (d = −1.00), and SCD (d = −1.52). For parenting stress difficulty, caregivers of adolescents with IBD reported significantly lower ratings compared to caregivers of youth receiving treatment for cancer (d = −2.74) obesity (d = −1.10), SCD (d = −1.03), and BE (d = −0.99). PIP-F and PIP-D scores obtained from the IBD sample were similar to caregivers of youth diagnosed with type 1 diabetes. Regarding PIP subscale scores comparing IBD and cancer samples, IBD parenting stress frequency scores were significantly lower than the cancer sample for Role Function (d = −0.70) and Emotional Distress (d = −1.09). IBD parenting stress difficulty scores were consistently significantly lower, with large effects detected, than scores from the cancer comparison sample: Communication (d = −2.35), Medical Care (d = −3.03), Role Function (d = −4.23), Emotional Distress (d = −2.10).
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.
Research supported in part by NIDDK K23 DK079037, PHS Grant P30 DK 078392, Procter and Gamble Pharmaceuticals, Prometheus Laboratories, Inc., USPHS Grant #M01 RR 08084 from the General Clinical Research Centers Program, National Center for Research Resources, NIH.