Effects of caregiver burden on quality of life and coping strategies utilized by caregivers of adult patients with inflammatory bowel disease

Introduction

Inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), is a chronic inflammatory disorder of the intestines that follows a remitting and relapsing clinical course. The annual incidence in Northern Europe and the United States is estimated to be from 2 to 11 per 100,000 for UC and 1 to 6 per 100,000 for CD [1,2]. A diagnosis of chronic illness such as IBD can be devastating, and often results in feelings of hostility, despair, and grief [3]. These psychological effects extend beyond the initial diagnosis and may lead to long-term psychological impairments that shape the daily life of an individual with IBD. It is well established that several psychosocial issues impact the quality of life (QOL) of IBD patients, including loss of energy, loss of control, poor body image, feelings of isolation or fear, feeling a burden, and inability to reach full personal capacity [4,5].

Chronic illnesses not only affect the individual patient, but also have a significant impact on the family unit [6-8]. A chronic illness, such as IBD, can completely disrupt a family’s ability to function normally and often imposes a strain on family members’ relationships [6]. During times of flare-up, family members and friends often become caregivers for the adult IBD patients. Given that IBD is currently a lifelong disease, caregivers face the challenge of learning to adapt to this disease throughout their lifespan. It has been shown that long-term chronic illnesses create an even greater burden on the family in comparison to acute illnesses [9]. Caregivers of patients with chronic physical illnesses often experience feelings of isolation and fatigue related to their increased responsibilities and challenges [8].

There has been significant research evaluating the caregiver’s QOL, stress, and burnout, in relation to other chronic physical and mental health illnesses that show similarly deleterious effects [7,8]. Caregivers’ well-being is an area of interest because of its potential impact on patients’ long-term outcomes [10,11]. Although some studies have examined the relationship between family functioning and parental stress among caregivers of pediatric IBD patients [12-14], there is limited knowledge concerning the QOL of caregivers, the level of burden, and coping mechanisms among caregivers of adult patients with IBD. An improved understanding of these factors would allow healthcare providers to better serve this population and to provide adequate psychosocial interventions to assist these patients and their caregivers. Accordingly, this study aimed to assess caregiver burden as it relates to QOL and coping among caregivers of adult patients with IBD.

Materials and methods

Results

General demographics

Of the 200 consecutive caregivers asked to participate, 162 (81.0%) consented and completed the survey. The overall characteristics of the IBD caregivers are summarized in Table 2. The mean age was 49.6±14.6 years old with a female predominance (66.9%). A majority of the participants (54.3%) had a minimum educational level of high school graduation, with nearly one third (29.7%) having a college or graduate degree. A total of 66.0% of caregivers were working outside of the home on either a full-time or part-time basis. Only a minority of the caregivers (3.2%) reported having to stop working because of caregiving to the patients. Over half (55.6%) of the caregivers reported being either the patient’s spouse or significant other, 22.5% reported being a parent, and 16.9% reported being a child. Approximately one third (31.1%) stated that in addition to the patient, they also had at least 1 dependent living at home. Over half reported a total annual household income of greater then $100,000. The caregivers reported that 58.0% of their patients had CD, while the reminder had either UC (36.3%) or indeterminate colitis (5.7%).

Table 2 General demographics of primary caregivers of adult patients with inflammatory bowel disease

QOL among IBD caregivers

In this cohort, the mean QOL score was 19.89±12.15. Participants with a QOL index of less than the mean of 19.89 were identified as having a lower QOL. In this cohort, factors associated with a lower QOL among IBD caregivers included (Table 3): presence of a dependent (other than the patient) in the household, caring for patients with active IBD exacerbation and higher disease severity, and a personal history of psychiatric illness. In contrast, factors not predictive of a lower QOL among caregivers were gender, ethnicity, age, household income, patient’s IBD subtype, relationship to patient, and patient’s involvement in a support group. Interestingly, the two factors predictive of a better QOL for caregivers were participation in religious or spiritual activities and attendance at a support group.

Table 3 Factors associated with lower quality of life among caregivers of inflammatory bowel disease (IBD) patients (N=162)

Factors predictive of high caregiver burden

The mean score on the ZBI in our cohort was 19.9±11.07. A total of 71 of the 162 (43.8%) caregivers reported having a high level of burden, as measured by a ZBI score of ≥21 [11,16]. Table 4 summarizes the factors predictive of a high burden among caregivers of IBD patients. Factors predictive of a higher degree of caregiver burden included female gender, younger age, annual income level <$30,000, having more than one dependent in the household (other than the patient), caring for a patient with active disease exacerbation or more severe disease, and a personal history of psychiatric illness. Participation in religious activities (ZBI 17.94±11.33 vs. 22.13±14.05; P=0.41) and attendance at a support group (18.29±12.37 vs. 23.67±13.06; P=0.035) were predictive of reduced level of burden. Duration served as caregiver, ethnicity, relationship to patient, and living in the same household as the patient were not predictive of a high level of burden.

Table 4 Factors predictive of a high level of burden among caregivers of inflammatory bowel disease (IBD) patients (N=162)

Discussion

The presence of IBD in the home can have a long-term impact on family members and may affect their overall QOL. Recent studies suggest that household members of IBD patients have mental disorders more frequently compared with the general population [19-22]. In contrast to previous studies that examined the impact of IBD on parents of children and adolescents [13,21], our study is one of the first large-scale, multi-institutional studies to evaluate the impact of an adult IBD patient on the family unit from a caregiver’s perspective. In our study, the factors associated with a lower QOL among IBD caregivers included the presence of a dependent (other than the patient) in the household, caring for patients with active IBD exacerbation, higher baseline disease severity, and a personal history of psychiatric illness. This is similar to previous findings for caregivers of patients with other chronic illnesses [6,7,9]. Our findings suggest an increased level of support is needed during times of disease exacerbation and, more generally, when the patient has a higher degree of disease severity. A better knowledge of the factors that impact negatively on the QOL in this population can guide clinical interventions by targeting caregivers with these higher risk characteristics. Herzer et al suggested that the caregivers and the patient make a joint contribution to both the patient’s and the caregivers’ QOL [22]. This highlights the need for family-based interventions that target both patients and their caregivers through a multidisciplinary approach that involves social workers, psychiatrists, nurse navigators, and primary care providers.

Previous studies have uniformly demonstrated that caregivers of patients with chronic disease are placed under significant financial, psychological, and physical strain [23-26]. A higher burden has also been linked to increased mortality among caregivers [23]. Though it is difficult to compare across studies, the caregivers in our cohort demonstrated a similar or perhaps even greater level of burden to that reported among caregivers of patients with acute brain injury (ZBI 21.7±10.1), Alzheimer’s disease (ZBI 15.0±10.0), and advanced cancers (12.0±8.5) [27]. Our study supports previous findings that the level of burden for caregivers was inversely related to the level of social support they received [11,28,29]. Though not directly measured in this study, previous studies have demonstrated that a patient’s adherence to medical therapy depends heavily on the ability of the family unit to absorb the challenges [30,31]. Interestingly, we clearly demonstrated that participation in spiritual activities and social support groups may help reduce the level of burden for the caregiver. This underscores the fact that, as IBD practitioners, we should encourage caregivers to attend these group-based activities, which we have demonstrated in our previous study to be an effective outlet for patients and their caregivers [32].

Over one third of the caregivers in our cohort employed maladaptive coping patterns. The factors predictive of impaired coping skills included male gender, lack of involvement in spiritual activity or a support group, a personal history of psychiatric illness, and living in a different household from the patient. These characteristics could help identify caregivers who might require a greater psychological level of support. The utilization of maladaptive coping patterns has been linked to impaired social functioning and poor psychological well-being [18,33]. It is important for healthcare providers to identify patients or caregivers with maladaptive patterns, as there could be untreated depression. In our study, approximately 20% of caregivers reported having a personal history of mood disorder, whereas over 30% of caregivers were utilizing maladaptive coping patterns. Given that some maladaptive coping strategies (i.e., self-blame) may overlap with depressive symptoms, it suggests that we may miss approximately one third of caregivers who may have concomitant undiagnosed depression. In addition, as healthcare providers we need to help caregivers identify which coping strategies they naturally use, which strategies are effective and which ones are futile. This has been shown to facilitate maximally effective coping, even among caregivers who normally cope ineffectively [18]. Future studies will be needed to identify whether the caregiver’s coping mechanisms also parallel those of the patient, and whether maladaptive mechanisms predict poorer long-term patient outcomes.

This study had several limitations. First, it had a cross-sectional design that allowed for the assessment of coping skills only at one single point in time. To fully study coping patterns as a process will require a longitudinal study, as patterns of QOL, burden, and coping are likely to fluctuate with the patient’s disease activity. Second, given that this was a survey-based study, there is likely to have been a recall bias, while the self-reporting aspect may have selected a subset of caregivers with a higher level of burden. Third, the terms utilized in our study, such as disease exacerbation, may not have been sufficiently specific. Exacerbation might include anything from increasing abdominal bloating to symptoms severe enough to require hospitalization. Therefore, various aspects of our comprehensive survey leave significant room for personal interpretation.

In conclusion, a large proportion of caregivers of IBD patients experience a high level of caregiver burden and a reduced QOL. The caregiver’s QOL was most reduced when the patient had a higher level of disease severity or when their disease was actively flaring. The highest level of burden was associated with female caregivers, those of younger age or lower income level, having additional dependents in the household, patients with higher disease severity, and a personal history of psychiatric illness. Participation in religious activities and attendance at a support group appeared to improve QOL and reduce the perceived caregiver burden. This study suggests the importance of a multidisciplinary approach involving psychologists, social workers, and medical professionals to help caregivers absorb these daily life challenges and overcome their burden.