Examining caregivers of individuals with OCD Lee et al.
Examining the effects of accommodation and caregiver burden on relationship satisfaction in caregivers of individuals with OCD Eric Lee, MA Daniel Steinberg, MA Lucy Phillips, MA John Hart, PhD Angela Smith, MA Chad Wetterneck, PhD
Obsessive-compulsive disorder (OCD) is a debilitating condition that does not always respond well to treatment. People with OCD often require a great deal of assistance from caregivers or family members, which is referred to as family accommodations. Caregivers may experience a great deal of stress, depression, and other problems as a result of caring for their loved one with OCD. They may have decreased relationship satisfaction due to the accommodations required by their family member. The present study examines the experience family members have of caring for someone with OCD and how it relates to caregiver burden, relationship satisfaction, and level of family accommodations. Participants for this study included 50 caregivers of individuals with OCD. Analyses were primarily correlational in nature. Results found that high relationship satisfaction was correlated with caregiver burden and OCD severity. (Bulletin of the Menninger Clinic, 79[1], 1–13)
Eric Lee, Daniel Steinberg, and Lucy Phillips are at the University of Houston–Clear Lake, Webster, Texas. John Hart is at the Menninger Clinic, Houston, Texas. Angela Smith is at the University of Houston. Chad Wetterneck is at Rogers Memorial Hospital, Oconomowoc, Wisconsin. Correspondence may be sent to Eric Lee, University of Houston–Clear Lake, 15800 Hwy. 3 #1221, Webster, TX 77598; e-mail: [email protected] (Copyright © 2015 The Menninger Foundation)
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Lee et al.
Obsessive-compulsive disorder (OCD) is characterized by obsessions and/or compulsions that cause marked distress, are time-consuming, and significantly interfere with an individual’s normal routine, occupational functioning, or usual social activities or relationships with others (American Psychiatric Association, 2000). OCD affects 2%–3% of people in the United States, and over half (50.6%) of reported cases are classified as severe (Kessler, Chiu, Demler, & Walters, 2005). Because of the debilitating nature of OCD, it is quite common for caregivers (e.g., significant others, spouses, parents) to provide some level of daily living assistance for OCD sufferers. As a result, caregivers often provide accommodations to help the OCD sufferer function better. Accommodations occur more often with OCD than with any other psychiatric condition, with estimates that between 62% and 100% of caregivers accommodate their loved ones’ ritualistic behavior (Renshaw, Steketee, & Chambless, 2005). Caregivers often provide accommodations by becoming involved in some aspect of the ritual of the OCD sufferer or through avoidance. The caregiver may become part of a ritual (e.g., providing reassurance that a task was performed properly) or perform a ritual for the patient (e.g., cleaning some surface that the patient deems “contaminated”). Caregivers may also become part of a ritual by providing reassurance to the OCD patient when an anxiety-provoking situation occurs. Other involvement of caregivers may include assisting the patient with responsibilities or daily activities (Ramos-Cerqueira, Torres, Torresan, Negreiros, & Vitorino, 2008). Caregivers may also accommodate the sufferer by helping them avoid contact with feared stimuli without being asked (e.g., cleaning areas or avoiding objects prior to them being in the patient’s presence). It is likely that these accommodations are done primarily to help alleviate the individual’s OCD-related anxiety and stress. Caregivers may also help the patient proceed through tasks at a less time-consuming pace. For example, an individual who struggles with preparing for the day because of extensive cleaning rituals may be assisted by a loved one who helps with the ritual process. An important aspect of accommodations is that they
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can serve as a way for the OCD patient to avoid coming into contact with a feared stimulus or situation, thereby increasing the fear of the stimulus or situation. Caregivers may believe that their accommodations provide their loved one’s with relief from the pain and anguish caused by OCD. Caregivers may be providing accommodations in the hopes that their loved one’s symptoms will be extinguished or reduced. Research has shown, however, that as accommodations increase, the severity of a patient’s OCD increases (RamosCerqueira, Torresan, Negreiros, & Vitorino, 2008; Storch et al., 2008). Merlo, Lehmkuhl, Geffken, and Storch (2009) found that decreases in accommodations during treatment predicted better treatment outcomes after controlling for pretreatment severity. These findings indicate that accommodations help maintain OCD severity rather than reduce it. In addition, accommodations prevent corrective learning because the individual with OCD has limited exposure to the feared stimulus or situation. It is believed that families who involve themselves in the OCD rituals aid in maintaining the OCD symptoms, which can lead the individual with OCD to require more accommodations from the caregivers (Barrett, Healy-Farrell, & March, 2004). By decreasing accommodations, caregivers can help the OCD patient increase contact with others and improve coping skills. Multiple studies have shown that accommodations are associated with poorer treatment outcomes in adults and children (Chambless & Steketee, 1999; Storch, et al., 2008). For this reason, cognitive-behavioral treatments have begun to emphasize reducing accommodations (Franklin et al., 1998). There is currently a paucity of research related to the reasons for caregiver accommodation. One potential factor may be that caregivers provide accommodations to relieve their own anxiety and stress resulting from their involvement in rituals that can be time-consuming, repetitive, and complex (i.e., caregivers may accommodate after becoming stressed by their loved one’s OCD issues that negatively affect their own lives). This could be a contributing factor as to why accommodating behavior often leads to increased levels of stress, negative affect, and other pos-
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sible problems in caregivers own lives (Ramos-Cerqueira et al., 2008). Caregiver burden describes the suffering that caregivers often experience from accommodating individuals with OCD. Caregivers of individuals with OCD often experience depression, ruminating, and being pulled into rituals (Waters & Barrett, 2000), difficult and stressful family relationships (Renshaw et al., 2005), and disrupted family or social life, increases in anger or frustration in family members, conflicts within the family, and a decrease in the general quality of life (Maina, Saracco, & Albert, 2006). Additionally, research indicates that the level of caregiver burden increases as OCD severity increases (Ramos-Cerqueira et al., 2008). To date, little research has been conducted on caregiver burden in families with an individual diagnosed with OCD. Although somewhat scarce, the current data indicate that OCD severity is related to higher levels of both accommodation and caregiver burden. The current study attempts to examine these constructs from the point of view of the caregiver. More importantly, it seeks to understand the effect that these constructs and OCD severity have on the relationship satisfaction of the caregiver. Currently, few studies exist that have specifically examined the role that OCD has on relationship satisfaction. A number of studies have provided evidence that OCD severity is related to impairment in social and family relationships (Hollander, Kwon, Stein, & Broatch, 1996; Stengler-Wenzke, Kroll, Matschinger, & Angermeyer, 2006); however, relationship satisfaction has neither been examined in caregivers of individuals with OCD, nor has its relationship to accommodation or caregiver burden been explored. Although no studies have specifically examined OCD, a number have found associations between anxiety disorders and relationship distress (Overbeek et al., 2006; Whisman, 2007; Zaider, Heimberg, & Iida, 2010). Upon first thought, one may be inclined to surmise that as OCD severity, accommodations, and caregiver burden increase, so too will relationship dissatisfaction. However, Zaider et al. (2010) offer an alternative
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explanation, hypothesizing that, “it is possible … that adults with anxiety disorders experience improved relationship quality during episodes of heightened anxiety because of increased support received from an intimate partner at this time” (p. xxx). As caregivers are more heavily burdened with accommodating their loved one’s OCD symptoms, perhaps relationship satisfaction improves due to increased levels of commitment, collaboration, and/or time spent together. Furthermore, Zaider et al. (2010) found that relationship satisfaction scores of participants with anxiety were significantly correlated with their own perception of whether their caregiver was helping to alleviate their anxiety, indicating that when individuals with anxiety perceive their caregiver as assisting with calming their anxiety, their levels of relationship satisfaction increase. The current study aims to explore the relationship between accommodations, caregiver burden, and relationship satisfaction in caregivers of individuals with OCD. We hypothesized that, similar to other studies, accommodation, caregiver burden, and OCD severity would be positively correlated. Additionally, we hypothesized that accommodation, caregiver burden, and OCD severity would be correlated with greater levels of relationship satisfaction. Method Participants Participants (N = 50) were recruited from a conference of the International OCD Foundation, which researchers, patients with OCD, and their caregivers attended. Questionnaires were given to caregivers of individuals with OCD. Participant ages ranged from 22 to 72, and their mean age was 48.2 (SD = 11.36). The majority of the caregivers sampled were female (70%), Caucasian (98%), and married (82%). Most of the caregivers sampled were parents of the OCD sufferer (68%), followed by significant others (16%), and finally, other relationships such as siblings and grandparents (16%).
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Sampling procedure Participants were asked if they were a caregiver of someone with OCD. Caregivers were given a packet of measures that took approximately 20 minutes to complete. All participants signed an informed consent form before receiving a survey packet. Participants were paid $10 to participate and were included in the study if they answered the survey questions inquiring about OCD diagnosis (presence of obsessions and/or compulsions, distress from symptoms, time-consuming nature of symptoms, etc.) in a manner that would indicate that the individual they care for suffers from OCD. Measures Yale-Brown Obsessive Compulsive Scale: Self-Report (YBOCS-SR). The Y-BOCS-SR (Steketee, Frost, & Bogart, 1996) is a 10-item self-report scale designed to measure the severity and type of symptoms in patients with OCD. Five domains for obsessions and compulsions are assessed: time, distress, interference, resistance, and control. The assessment yields three scores: an obsessions severity score (range = 0–20), a compulsions severity score (range = 0–20), and a total score (range = 0–40). A total score of 16 is commonly used as the clinical cutoff. The Y-BOCS-SR displays good test-retest reliability (.80) and convergent reliability between the self-report and interview versions (.75) (Steketee et al., 1996). In the current study, participants completed the Y-BOCS-SR with regard to the individual for whom they care. Internal consistency in the current study was excellent (Cronbach’s α = .93). Family Accommodation Scale (FAS). The FAS (Calvocoressi et al., 1995) is a 13-item scale that measures the level of accommodations that a caregiver provides to a person who suffers from OCD. Items are rated from on a 5-point Likert scale (0 = Not at all or None to 4 = Every day or Extremely) with regard to how often accommodation occurs or how extreme the accommodations are. Higher scores indicate higher levels of accommodations that caregivers provide. Internal consistency in the current study was good (Cronbach’s α = .90). 6
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Dyadic Adjustment Scale (DAS-7). The DAS-7 (Hunsley, Best, Lefebvre, & Vito, 2001) is a seven-item measure used to assess adjustment in couples and distress in the relationship. Although primarily used to assess couples, the questions are applicable to important relationships in general. For example, items inquire about agreement between dyads regarding life philosophy and goals as well as how often they work together or discuss important topics with one another. Higher scores indicate less distress and higher adjustment. Scores less than 21 are considered to indicate a relationship in distress. Internal consistency in the current study was good (Cronbach’s α = .83). Caregiver Burden Scale (CBS). The CBS (Glajchen et al., 2005) is a 14-item scale originally developed as a self-report questionnaire measuring caregiver burden in relatives of impaired elderly individuals. The first seven questions assess subjective burden, which involves personal attitudes and feelings of the caregiver regarding the experience in that role. The remaining seven questions assess objective burden, which is the amount of disruption or change that takes place in the caregiver’s life. The scale captures five factors focusing on general feelings, feelings regarding caring for the relative, a sense of caregiver responsibility, feelings when spending time with the impaired relative, and how the relationship negatively affects the caregiver’s life. Items are rated on a 4-point Likert scale (0 = Not at all to 3 = Often). Internal consistency in the current study was excellent (Cronbach’s α = .91). Results Pearson’s correlations were performed to examine the relationships between each of the study variables. These results are displayed in Table 1. Correlations between the total scores for the FAS, Y-BOCS (caregiver rating), CBS, and DAS revealed significant relationships. The FAS was significantly correlated to the Y-BOCS (r = .58, p < .01) and the CBS (r = .74, p < .01). The Y-BOCS was also significantly correlated with the CBS (r = .56,
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Lee et al. Table 1. Correlations Between the FAS, Y-BOCS, CBS, and DAS Y-BOCS Caregiver Scores Family Accommodation Scale Y-BOCS Caregiver Scores Caregiver Burden Scale Dyadic Adjustment Scale
.58** 1.0
Caregiver Burden Scale (CBS)
Dyadic Adjustment Scale (DAS)
.74**
.11
.56**
.48**
1.0
.39** 1.0
*p < .05. **p < .01.
p < .01) and the DAS (r = .48, p < .01). The DAS was also significantly correlated with the CBS (r = .39, p < .01). Mean scores for each of the measures are displayed in Table 2. Y-BOCS scores (as rated by the caregiver) were on average in the moderate range (19.58), indicating that the caregivers reported OCD severity slightly below the clinical cutoff level of 21. CBS scores were in the low range (18.53), indicating that on average the participants felt that they were seldom burdened by their responsibilities to the individual whom they cared for. Similarly, FAS scores were on average in the low range (14.82), indicating that the participants were accommodating approximately one to three times per week on average and felt that their accommodations were moderate with regard to effort and distress. Finally, moderately high DAS scores indicated that on average the sample considered their relationships to be stable and relatively distress free. Discussion The results support our first hypothesis, that accommodation would be positively correlated with caregiver burden. It appears that families and caregivers who provide the most accommodations and assistance experience the most burden in caring for their family member with OCD. Furthermore, it seems that those who do not provide much assistance or accommodations do not experience a great deal of caregiver burden. Likewise,
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Examining caregivers of individuals with OCD Table 2. Mean Scores Mean
SD
Family Accommodation Scale
14.82
10.91
Y-BOCS Caregiver Scores
19.58
5.78
Caregiver Burden Scale
18.53
12.07
Dyadic Adjustment Scale
26.76
7.16
the results from the present study support the hypothesis that high levels of caregiver burden and OCD severity are associated with higher relationship satisfaction. The greater the caregivers rated their loved ones’ OCD severity and their own subjective experience of the burden associated with caring for them, the greater their report of their relationship satisfaction was. These results have some implications for the treatment of individuals with OCD, particularly if they are currently receiving accommodations from caregivers that may be contributing to their symptom severity. Considering that caregivers who were acting in an accommodator role reported that their relationship satisfaction was not negatively affected by their burden, it seems likely that similar results might occur if those same caregivers were asked to provide social support during treatment rather than accommodations for obsessions or compulsions. This might be particularly important because social support has been found to play a significant role in treatment outcomes (Steketee, 1993). Likewise, it might be inferred that the willingness with which caregivers seemed to engage in accommodations that incurred burden commensurate with the severity of their loved one with OCD may indicate that they also would be willing to engage in providing social support. Although the results indicated that accommodations were significantly and positively related to both OCD severity and caregiver burden, accommodations were not significantly related to relationship satisfaction. It seems that in our sample the actual level of accommodations being provided was not related to satisfaction within the relationship, but rather, only the perception of burden that the act of accommodating seemed to incur for the caregiver.
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While perhaps not entirely surprising, the finding that relationship satisfaction is positively correlated with both OCD severity and caregiver burden scores is an interesting one. It raises the questions of what a healthy relationship with an individual with OCD would consist of and how one would go about improving said relationship to better support healthy behavior. Perhaps these “satisfied” relationships are healthy in terms of spending time with one another, having similar goals, and liking one another; yet they may not be functional in terms of providing a healthy environment for treating OCD. The results from the current study indicate that relationship satisfaction is not related to accommodation; however, there is the possibility that more satisfactory relationships exacerbate the OCD symptoms through some other means. These could include dysfunctional attachment patterns, being less likely to recognize or report accommodation, or other extraneous issues related to quality of life. Further research is required to explore this relationship. Special consideration should be paid to the nature of the sample from which this information was collected, as these individuals were participating or attending a conference geared toward individuals suffering from OCD and their caregivers. The fact that these participants were present at this conference likely indicates a high level of support for their loved one with OCD, and may not necessarily reflect the level of commitment of all individuals who might be providing accommodations. Conversely, caregivers may have attended the conference without the individual with OCD in an attempt to learn new ways to help or better understand those whom they care for. Further examination of these relationships in broader samples may be necessary to be able to generalize these results. Due to the exploratory, cross-sectional nature of the current study, there are some notable limitations. While useful, the results of this study are limited by their correlational nature. The results cannot establish any causality between the various measures. Future research in this area could assess these variables at pre- and posttreatment to provide a fuller, more comprehensive understanding of these constructs. Due to the constraints of the conference environment in which the questionnaires were given,
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we were unable to fully assess the pathology of the individuals for whom the caregivers provided accommodation. While the OCD screening questions possessed face validity, there is the possibility that they over- or underdiagnosed the individuals with OCD. Although Wetterneck et al. (2013) recently found the OCD screener questions to perform similarly to both the Y-BOCS and the Obsessive-Compulsive Inventory (Foa, Kozak, Salkovskis, Coles, & Amir, 1998), future research would benefit from the use of more robust screening methods. Finally, because the individuals with OCD were not present, the Y-BOCS was filled out from the point of view of the caregivers and their perception of the symptom severity of those whom they care for. Despite these limitations, this research provides evidence that accommodation, caregiver burden, and relationship satisfaction may be important areas with regard to OCD treatment. Further research is needed to more fully understand the relationship between these constructs and how this information could be used to influence future treatment of individuals with OCD as well as their caregivers.
References American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (rev. 4th ed.). Washington, DC: Author. Barrett, P., Healy-Farrell, L., & March, J. S. (2004). Cognitive-behavioral family treatment of childhood obsessive-compulsive disorder: A controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 43, 46–62. Calvocoressi, L., Lewis, B., Harris, H., Trufan, S. J., Goodman, W. K., McDougle, C. J., et al. (1995). Family accommodation in obsessivecompulsive disorder. American Journal of Psychiatry, 152, 441–443. Chambless, D. L., & Steketee, G. (1999). Expressed emotion and behavior therapy outcome: A prospective study with obsessive-compulsive and agoraphobic outpatients. Journal of Consulting and Clinical Psychology, 67, 658–665. Foa, E. B., Kozak, M. J., Salkovskis, P. M., Coles, M. E., & Amir, N. (1998). The validation of a new obsessive-compulsive disorder scale:
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Lee et al. The Obsessive-Compulsive Inventory. Psychological Assessment, 10(3), 206–214. Franklin, M. E., Kozak, M. J., Cashman, L. A., Coles, M. E., Rheingold, A. A., & Foa, E. B. (1998). Cognitive-behavioral treatment of pediatric obsessive-compulsive disorder: An open clinical trial. Journal of the American Academy of Child & Adolescent Psychiatry, 37(4), 412–419. Glajchen, M., Kornblith, A., Homel, P., Fraidin, L., Mauskop, A., & Portenoy, R. K. (2005). Development of a brief assessment scale for caregivers of the medically ill. Journal of Pain and Symptom Management, 29, 245–254. Hollander, E., Kwon, J. H., Stein, D. J., & Broatch, J. (1996). Obsessivecompulsive and spectrum disorders: Overview and quality of life issues. Journal of Clinical Psychiatry, 57, 3–6. Hunsley, J., Best, M., Lefebvre, M., & Vito, D. (2001). The seven-item short form of the Dyadic Adjustment Scale: Further evidence for construct validity. American Journal of Family Therapy, 29(4), 325–335. Kessler, R. C., Chiu, W. T., Demler, O., & Walters, E. E. (2005). Prevalence, severity, and comorbidity of twelve-month DSM-IV disorders in the National Comorbidity Survey Replication (NCS-R). Archives of General Psychiatry, 62(6), 617–627. Maina, G., Saracco, P., & Albert, U. (2006). Family-focused treatments for obsessive-compulsive disorder. Journal of Treatment Evaluation, 3, 382–390. Merlo, L. J., Lehmkuhl, H. D., Geffken, G. R., & Storch, E. A. (2009). Decreased family accommodation associated with improved therapy outcome in pediatric obsessive-compulsive disorder. Journal of Consulting and Clinical Psychology, 77(2), 355–360. Overbeek, G., Vollebergh, W., de Graaf, R., Scholte, R., de Kemp, R., & Engels, R. (2006). Longitudinal associations of marital quality and marital dissolution with the incidence of DSM-III-R disorders. Journal of Family Psychology, 20, 284–291. Ramos-Cerqueira, A. T. A., Torres, A. R., Torresan, R. C., Negreiros, A. P. M., & Vitorino, C. N. (2008). Emotional burden in caregivers of patients with obsessive-compulsive disorder. Depression and Anxiety, 25, 1020–1027. Renshaw, K. D., Steketee, G., & Chambless, D. L. (2005). Involving family members in the treatment of OCD. Cognitive Behaviour Therapy, 34, 164–175. Steketee, G. (1993). Social support and treatment outcome of obsessivecompulsive disorder at 9-month follow-up. Behavioural and Cognitive Psychotherapy, 21(2), 81–95. Steketee, G., Frost, R., & Bogart, K. (1996). The Yale-Brown Obsessive Compulsive Scale: Interview versus self-report. Behaviour Research and Therapy, 34(8), 675–684.
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Examining caregivers of individuals with OCD Stengler-Wenzke, K., Kroll, M., Matschinger, H., & Angermeyer, M. C. (2006). Subjective quality of life of patients with obsessive-compulsive disorder. Social Psychiatry and Psychiatric Epidemiology, 41(8), 662–668. Storch, E. A., Merlo, L. J., Larson, M., Marien, W. E., Geffken, G. R., Jacob, M. L., et al. (2008). Clinical features associated with treatment resistant pediatric obsessive-compulsive disorder. Comprehensive Psychiatry, 49, 35–42. Waters, T. L., & Barrett, P. M. (2000). The role of the family in childhood obsessive-compulsive disorder. Clinical Child and Family Psychology Review, 3, 173–184. Wetterneck, C. T., Hong, J., Bravo, M., Lee, E. B., Hart, J. M., & Björgvinsson, T. (2013, July). Examination of the effectiveness of a short OCD screener. Paper presented at the 20th annual conference of the International Obsessive-Compulsive Disorder Foundation, Atlanta, Georgia. Whisman, M. A. (2007). Marital distress and DSM-IV psychiatric disorders in a population-based national survey. Journal of Abnormal Psychology, 116, 638–643. Zaider, T. I., Heimberg, R. G., & Iida, M. (2010). Anxiety disorders and intimate relationships: A study of daily processes in couples. Journal of Abnormal Psychology, 119(1), 163–173.
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Copyright of Bulletin of the Menninger Clinic is the property of Guilford Publications Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Examining the effects of accommodation and caregiver burden on relationship satisfaction in caregivers of individuals with OCD Eric Lee, MA Daniel Steinberg, MA Lucy Phillips, MA John Hart, PhD Angela Smith, MA Chad Wetterneck, PhD
Obsessive-compulsive disorder (OCD) is a debilitating condition that does not always respond well to treatment. People with OCD often require a great deal of assistance from caregivers or family members, which is referred to as family accommodations. Caregivers may experience a great deal of stress, depression, and other problems as a result of caring for their loved one with OCD. They may have decreased relationship satisfaction due to the accommodations required by their family member. The present study examines the experience family members have of caring for someone with OCD and how it relates to caregiver burden, relationship satisfaction, and level of family accommodations. Participants for this study included 50 caregivers of individuals with OCD. Analyses were primarily correlational in nature. Results found that high relationship satisfaction was correlated with caregiver burden and OCD severity. (Bulletin of the Menninger Clinic, 79[1], 1–13)
Eric Lee, Daniel Steinberg, and Lucy Phillips are at the University of Houston–Clear Lake, Webster, Texas. John Hart is at the Menninger Clinic, Houston, Texas. Angela Smith is at the University of Houston. Chad Wetterneck is at Rogers Memorial Hospital, Oconomowoc, Wisconsin. Correspondence may be sent to Eric Lee, University of Houston–Clear Lake, 15800 Hwy. 3 #1221, Webster, TX 77598; e-mail: [email protected] (Copyright © 2015 The Menninger Foundation)
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Obsessive-compulsive disorder (OCD) is characterized by obsessions and/or compulsions that cause marked distress, are time-consuming, and significantly interfere with an individual’s normal routine, occupational functioning, or usual social activities or relationships with others (American Psychiatric Association, 2000). OCD affects 2%–3% of people in the United States, and over half (50.6%) of reported cases are classified as severe (Kessler, Chiu, Demler, & Walters, 2005). Because of the debilitating nature of OCD, it is quite common for caregivers (e.g., significant others, spouses, parents) to provide some level of daily living assistance for OCD sufferers. As a result, caregivers often provide accommodations to help the OCD sufferer function better. Accommodations occur more often with OCD than with any other psychiatric condition, with estimates that between 62% and 100% of caregivers accommodate their loved ones’ ritualistic behavior (Renshaw, Steketee, & Chambless, 2005). Caregivers often provide accommodations by becoming involved in some aspect of the ritual of the OCD sufferer or through avoidance. The caregiver may become part of a ritual (e.g., providing reassurance that a task was performed properly) or perform a ritual for the patient (e.g., cleaning some surface that the patient deems “contaminated”). Caregivers may also become part of a ritual by providing reassurance to the OCD patient when an anxiety-provoking situation occurs. Other involvement of caregivers may include assisting the patient with responsibilities or daily activities (Ramos-Cerqueira, Torres, Torresan, Negreiros, & Vitorino, 2008). Caregivers may also accommodate the sufferer by helping them avoid contact with feared stimuli without being asked (e.g., cleaning areas or avoiding objects prior to them being in the patient’s presence). It is likely that these accommodations are done primarily to help alleviate the individual’s OCD-related anxiety and stress. Caregivers may also help the patient proceed through tasks at a less time-consuming pace. For example, an individual who struggles with preparing for the day because of extensive cleaning rituals may be assisted by a loved one who helps with the ritual process. An important aspect of accommodations is that they
2
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Examining caregivers of individuals with OCD
can serve as a way for the OCD patient to avoid coming into contact with a feared stimulus or situation, thereby increasing the fear of the stimulus or situation. Caregivers may believe that their accommodations provide their loved one’s with relief from the pain and anguish caused by OCD. Caregivers may be providing accommodations in the hopes that their loved one’s symptoms will be extinguished or reduced. Research has shown, however, that as accommodations increase, the severity of a patient’s OCD increases (RamosCerqueira, Torresan, Negreiros, & Vitorino, 2008; Storch et al., 2008). Merlo, Lehmkuhl, Geffken, and Storch (2009) found that decreases in accommodations during treatment predicted better treatment outcomes after controlling for pretreatment severity. These findings indicate that accommodations help maintain OCD severity rather than reduce it. In addition, accommodations prevent corrective learning because the individual with OCD has limited exposure to the feared stimulus or situation. It is believed that families who involve themselves in the OCD rituals aid in maintaining the OCD symptoms, which can lead the individual with OCD to require more accommodations from the caregivers (Barrett, Healy-Farrell, & March, 2004). By decreasing accommodations, caregivers can help the OCD patient increase contact with others and improve coping skills. Multiple studies have shown that accommodations are associated with poorer treatment outcomes in adults and children (Chambless & Steketee, 1999; Storch, et al., 2008). For this reason, cognitive-behavioral treatments have begun to emphasize reducing accommodations (Franklin et al., 1998). There is currently a paucity of research related to the reasons for caregiver accommodation. One potential factor may be that caregivers provide accommodations to relieve their own anxiety and stress resulting from their involvement in rituals that can be time-consuming, repetitive, and complex (i.e., caregivers may accommodate after becoming stressed by their loved one’s OCD issues that negatively affect their own lives). This could be a contributing factor as to why accommodating behavior often leads to increased levels of stress, negative affect, and other pos-
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Lee et al.
sible problems in caregivers own lives (Ramos-Cerqueira et al., 2008). Caregiver burden describes the suffering that caregivers often experience from accommodating individuals with OCD. Caregivers of individuals with OCD often experience depression, ruminating, and being pulled into rituals (Waters & Barrett, 2000), difficult and stressful family relationships (Renshaw et al., 2005), and disrupted family or social life, increases in anger or frustration in family members, conflicts within the family, and a decrease in the general quality of life (Maina, Saracco, & Albert, 2006). Additionally, research indicates that the level of caregiver burden increases as OCD severity increases (Ramos-Cerqueira et al., 2008). To date, little research has been conducted on caregiver burden in families with an individual diagnosed with OCD. Although somewhat scarce, the current data indicate that OCD severity is related to higher levels of both accommodation and caregiver burden. The current study attempts to examine these constructs from the point of view of the caregiver. More importantly, it seeks to understand the effect that these constructs and OCD severity have on the relationship satisfaction of the caregiver. Currently, few studies exist that have specifically examined the role that OCD has on relationship satisfaction. A number of studies have provided evidence that OCD severity is related to impairment in social and family relationships (Hollander, Kwon, Stein, & Broatch, 1996; Stengler-Wenzke, Kroll, Matschinger, & Angermeyer, 2006); however, relationship satisfaction has neither been examined in caregivers of individuals with OCD, nor has its relationship to accommodation or caregiver burden been explored. Although no studies have specifically examined OCD, a number have found associations between anxiety disorders and relationship distress (Overbeek et al., 2006; Whisman, 2007; Zaider, Heimberg, & Iida, 2010). Upon first thought, one may be inclined to surmise that as OCD severity, accommodations, and caregiver burden increase, so too will relationship dissatisfaction. However, Zaider et al. (2010) offer an alternative
4
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Examining caregivers of individuals with OCD
explanation, hypothesizing that, “it is possible … that adults with anxiety disorders experience improved relationship quality during episodes of heightened anxiety because of increased support received from an intimate partner at this time” (p. xxx). As caregivers are more heavily burdened with accommodating their loved one’s OCD symptoms, perhaps relationship satisfaction improves due to increased levels of commitment, collaboration, and/or time spent together. Furthermore, Zaider et al. (2010) found that relationship satisfaction scores of participants with anxiety were significantly correlated with their own perception of whether their caregiver was helping to alleviate their anxiety, indicating that when individuals with anxiety perceive their caregiver as assisting with calming their anxiety, their levels of relationship satisfaction increase. The current study aims to explore the relationship between accommodations, caregiver burden, and relationship satisfaction in caregivers of individuals with OCD. We hypothesized that, similar to other studies, accommodation, caregiver burden, and OCD severity would be positively correlated. Additionally, we hypothesized that accommodation, caregiver burden, and OCD severity would be correlated with greater levels of relationship satisfaction. Method Participants Participants (N = 50) were recruited from a conference of the International OCD Foundation, which researchers, patients with OCD, and their caregivers attended. Questionnaires were given to caregivers of individuals with OCD. Participant ages ranged from 22 to 72, and their mean age was 48.2 (SD = 11.36). The majority of the caregivers sampled were female (70%), Caucasian (98%), and married (82%). Most of the caregivers sampled were parents of the OCD sufferer (68%), followed by significant others (16%), and finally, other relationships such as siblings and grandparents (16%).
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Sampling procedure Participants were asked if they were a caregiver of someone with OCD. Caregivers were given a packet of measures that took approximately 20 minutes to complete. All participants signed an informed consent form before receiving a survey packet. Participants were paid $10 to participate and were included in the study if they answered the survey questions inquiring about OCD diagnosis (presence of obsessions and/or compulsions, distress from symptoms, time-consuming nature of symptoms, etc.) in a manner that would indicate that the individual they care for suffers from OCD. Measures Yale-Brown Obsessive Compulsive Scale: Self-Report (YBOCS-SR). The Y-BOCS-SR (Steketee, Frost, & Bogart, 1996) is a 10-item self-report scale designed to measure the severity and type of symptoms in patients with OCD. Five domains for obsessions and compulsions are assessed: time, distress, interference, resistance, and control. The assessment yields three scores: an obsessions severity score (range = 0–20), a compulsions severity score (range = 0–20), and a total score (range = 0–40). A total score of 16 is commonly used as the clinical cutoff. The Y-BOCS-SR displays good test-retest reliability (.80) and convergent reliability between the self-report and interview versions (.75) (Steketee et al., 1996). In the current study, participants completed the Y-BOCS-SR with regard to the individual for whom they care. Internal consistency in the current study was excellent (Cronbach’s α = .93). Family Accommodation Scale (FAS). The FAS (Calvocoressi et al., 1995) is a 13-item scale that measures the level of accommodations that a caregiver provides to a person who suffers from OCD. Items are rated from on a 5-point Likert scale (0 = Not at all or None to 4 = Every day or Extremely) with regard to how often accommodation occurs or how extreme the accommodations are. Higher scores indicate higher levels of accommodations that caregivers provide. Internal consistency in the current study was good (Cronbach’s α = .90). 6
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Dyadic Adjustment Scale (DAS-7). The DAS-7 (Hunsley, Best, Lefebvre, & Vito, 2001) is a seven-item measure used to assess adjustment in couples and distress in the relationship. Although primarily used to assess couples, the questions are applicable to important relationships in general. For example, items inquire about agreement between dyads regarding life philosophy and goals as well as how often they work together or discuss important topics with one another. Higher scores indicate less distress and higher adjustment. Scores less than 21 are considered to indicate a relationship in distress. Internal consistency in the current study was good (Cronbach’s α = .83). Caregiver Burden Scale (CBS). The CBS (Glajchen et al., 2005) is a 14-item scale originally developed as a self-report questionnaire measuring caregiver burden in relatives of impaired elderly individuals. The first seven questions assess subjective burden, which involves personal attitudes and feelings of the caregiver regarding the experience in that role. The remaining seven questions assess objective burden, which is the amount of disruption or change that takes place in the caregiver’s life. The scale captures five factors focusing on general feelings, feelings regarding caring for the relative, a sense of caregiver responsibility, feelings when spending time with the impaired relative, and how the relationship negatively affects the caregiver’s life. Items are rated on a 4-point Likert scale (0 = Not at all to 3 = Often). Internal consistency in the current study was excellent (Cronbach’s α = .91). Results Pearson’s correlations were performed to examine the relationships between each of the study variables. These results are displayed in Table 1. Correlations between the total scores for the FAS, Y-BOCS (caregiver rating), CBS, and DAS revealed significant relationships. The FAS was significantly correlated to the Y-BOCS (r = .58, p < .01) and the CBS (r = .74, p < .01). The Y-BOCS was also significantly correlated with the CBS (r = .56,
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Lee et al. Table 1. Correlations Between the FAS, Y-BOCS, CBS, and DAS Y-BOCS Caregiver Scores Family Accommodation Scale Y-BOCS Caregiver Scores Caregiver Burden Scale Dyadic Adjustment Scale
.58** 1.0
Caregiver Burden Scale (CBS)
Dyadic Adjustment Scale (DAS)
.74**
.11
.56**
.48**
1.0
.39** 1.0
*p < .05. **p < .01.
p < .01) and the DAS (r = .48, p < .01). The DAS was also significantly correlated with the CBS (r = .39, p < .01). Mean scores for each of the measures are displayed in Table 2. Y-BOCS scores (as rated by the caregiver) were on average in the moderate range (19.58), indicating that the caregivers reported OCD severity slightly below the clinical cutoff level of 21. CBS scores were in the low range (18.53), indicating that on average the participants felt that they were seldom burdened by their responsibilities to the individual whom they cared for. Similarly, FAS scores were on average in the low range (14.82), indicating that the participants were accommodating approximately one to three times per week on average and felt that their accommodations were moderate with regard to effort and distress. Finally, moderately high DAS scores indicated that on average the sample considered their relationships to be stable and relatively distress free. Discussion The results support our first hypothesis, that accommodation would be positively correlated with caregiver burden. It appears that families and caregivers who provide the most accommodations and assistance experience the most burden in caring for their family member with OCD. Furthermore, it seems that those who do not provide much assistance or accommodations do not experience a great deal of caregiver burden. Likewise,
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Examining caregivers of individuals with OCD Table 2. Mean Scores Mean
SD
Family Accommodation Scale
14.82
10.91
Y-BOCS Caregiver Scores
19.58
5.78
Caregiver Burden Scale
18.53
12.07
Dyadic Adjustment Scale
26.76
7.16
the results from the present study support the hypothesis that high levels of caregiver burden and OCD severity are associated with higher relationship satisfaction. The greater the caregivers rated their loved ones’ OCD severity and their own subjective experience of the burden associated with caring for them, the greater their report of their relationship satisfaction was. These results have some implications for the treatment of individuals with OCD, particularly if they are currently receiving accommodations from caregivers that may be contributing to their symptom severity. Considering that caregivers who were acting in an accommodator role reported that their relationship satisfaction was not negatively affected by their burden, it seems likely that similar results might occur if those same caregivers were asked to provide social support during treatment rather than accommodations for obsessions or compulsions. This might be particularly important because social support has been found to play a significant role in treatment outcomes (Steketee, 1993). Likewise, it might be inferred that the willingness with which caregivers seemed to engage in accommodations that incurred burden commensurate with the severity of their loved one with OCD may indicate that they also would be willing to engage in providing social support. Although the results indicated that accommodations were significantly and positively related to both OCD severity and caregiver burden, accommodations were not significantly related to relationship satisfaction. It seems that in our sample the actual level of accommodations being provided was not related to satisfaction within the relationship, but rather, only the perception of burden that the act of accommodating seemed to incur for the caregiver.
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While perhaps not entirely surprising, the finding that relationship satisfaction is positively correlated with both OCD severity and caregiver burden scores is an interesting one. It raises the questions of what a healthy relationship with an individual with OCD would consist of and how one would go about improving said relationship to better support healthy behavior. Perhaps these “satisfied” relationships are healthy in terms of spending time with one another, having similar goals, and liking one another; yet they may not be functional in terms of providing a healthy environment for treating OCD. The results from the current study indicate that relationship satisfaction is not related to accommodation; however, there is the possibility that more satisfactory relationships exacerbate the OCD symptoms through some other means. These could include dysfunctional attachment patterns, being less likely to recognize or report accommodation, or other extraneous issues related to quality of life. Further research is required to explore this relationship. Special consideration should be paid to the nature of the sample from which this information was collected, as these individuals were participating or attending a conference geared toward individuals suffering from OCD and their caregivers. The fact that these participants were present at this conference likely indicates a high level of support for their loved one with OCD, and may not necessarily reflect the level of commitment of all individuals who might be providing accommodations. Conversely, caregivers may have attended the conference without the individual with OCD in an attempt to learn new ways to help or better understand those whom they care for. Further examination of these relationships in broader samples may be necessary to be able to generalize these results. Due to the exploratory, cross-sectional nature of the current study, there are some notable limitations. While useful, the results of this study are limited by their correlational nature. The results cannot establish any causality between the various measures. Future research in this area could assess these variables at pre- and posttreatment to provide a fuller, more comprehensive understanding of these constructs. Due to the constraints of the conference environment in which the questionnaires were given,
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we were unable to fully assess the pathology of the individuals for whom the caregivers provided accommodation. While the OCD screening questions possessed face validity, there is the possibility that they over- or underdiagnosed the individuals with OCD. Although Wetterneck et al. (2013) recently found the OCD screener questions to perform similarly to both the Y-BOCS and the Obsessive-Compulsive Inventory (Foa, Kozak, Salkovskis, Coles, & Amir, 1998), future research would benefit from the use of more robust screening methods. Finally, because the individuals with OCD were not present, the Y-BOCS was filled out from the point of view of the caregivers and their perception of the symptom severity of those whom they care for. Despite these limitations, this research provides evidence that accommodation, caregiver burden, and relationship satisfaction may be important areas with regard to OCD treatment. Further research is needed to more fully understand the relationship between these constructs and how this information could be used to influence future treatment of individuals with OCD as well as their caregivers.
References American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (rev. 4th ed.). Washington, DC: Author. Barrett, P., Healy-Farrell, L., & March, J. S. (2004). Cognitive-behavioral family treatment of childhood obsessive-compulsive disorder: A controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 43, 46–62. Calvocoressi, L., Lewis, B., Harris, H., Trufan, S. J., Goodman, W. K., McDougle, C. J., et al. (1995). Family accommodation in obsessivecompulsive disorder. American Journal of Psychiatry, 152, 441–443. Chambless, D. L., & Steketee, G. (1999). Expressed emotion and behavior therapy outcome: A prospective study with obsessive-compulsive and agoraphobic outpatients. Journal of Consulting and Clinical Psychology, 67, 658–665. Foa, E. B., Kozak, M. J., Salkovskis, P. M., Coles, M. E., & Amir, N. (1998). The validation of a new obsessive-compulsive disorder scale:
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Lee et al. The Obsessive-Compulsive Inventory. Psychological Assessment, 10(3), 206–214. Franklin, M. E., Kozak, M. J., Cashman, L. A., Coles, M. E., Rheingold, A. A., & Foa, E. B. (1998). Cognitive-behavioral treatment of pediatric obsessive-compulsive disorder: An open clinical trial. Journal of the American Academy of Child & Adolescent Psychiatry, 37(4), 412–419. Glajchen, M., Kornblith, A., Homel, P., Fraidin, L., Mauskop, A., & Portenoy, R. K. (2005). Development of a brief assessment scale for caregivers of the medically ill. Journal of Pain and Symptom Management, 29, 245–254. Hollander, E., Kwon, J. H., Stein, D. J., & Broatch, J. (1996). Obsessivecompulsive and spectrum disorders: Overview and quality of life issues. Journal of Clinical Psychiatry, 57, 3–6. Hunsley, J., Best, M., Lefebvre, M., & Vito, D. (2001). The seven-item short form of the Dyadic Adjustment Scale: Further evidence for construct validity. American Journal of Family Therapy, 29(4), 325–335. Kessler, R. C., Chiu, W. T., Demler, O., & Walters, E. E. (2005). Prevalence, severity, and comorbidity of twelve-month DSM-IV disorders in the National Comorbidity Survey Replication (NCS-R). Archives of General Psychiatry, 62(6), 617–627. Maina, G., Saracco, P., & Albert, U. (2006). Family-focused treatments for obsessive-compulsive disorder. Journal of Treatment Evaluation, 3, 382–390. Merlo, L. J., Lehmkuhl, H. D., Geffken, G. R., & Storch, E. A. (2009). Decreased family accommodation associated with improved therapy outcome in pediatric obsessive-compulsive disorder. Journal of Consulting and Clinical Psychology, 77(2), 355–360. Overbeek, G., Vollebergh, W., de Graaf, R., Scholte, R., de Kemp, R., & Engels, R. (2006). Longitudinal associations of marital quality and marital dissolution with the incidence of DSM-III-R disorders. Journal of Family Psychology, 20, 284–291. Ramos-Cerqueira, A. T. A., Torres, A. R., Torresan, R. C., Negreiros, A. P. M., & Vitorino, C. N. (2008). Emotional burden in caregivers of patients with obsessive-compulsive disorder. Depression and Anxiety, 25, 1020–1027. Renshaw, K. D., Steketee, G., & Chambless, D. L. (2005). Involving family members in the treatment of OCD. Cognitive Behaviour Therapy, 34, 164–175. Steketee, G. (1993). Social support and treatment outcome of obsessivecompulsive disorder at 9-month follow-up. Behavioural and Cognitive Psychotherapy, 21(2), 81–95. Steketee, G., Frost, R., & Bogart, K. (1996). The Yale-Brown Obsessive Compulsive Scale: Interview versus self-report. Behaviour Research and Therapy, 34(8), 675–684.
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Examining caregivers of individuals with OCD Stengler-Wenzke, K., Kroll, M., Matschinger, H., & Angermeyer, M. C. (2006). Subjective quality of life of patients with obsessive-compulsive disorder. Social Psychiatry and Psychiatric Epidemiology, 41(8), 662–668. Storch, E. A., Merlo, L. J., Larson, M., Marien, W. E., Geffken, G. R., Jacob, M. L., et al. (2008). Clinical features associated with treatment resistant pediatric obsessive-compulsive disorder. Comprehensive Psychiatry, 49, 35–42. Waters, T. L., & Barrett, P. M. (2000). The role of the family in childhood obsessive-compulsive disorder. Clinical Child and Family Psychology Review, 3, 173–184. Wetterneck, C. T., Hong, J., Bravo, M., Lee, E. B., Hart, J. M., & Björgvinsson, T. (2013, July). Examination of the effectiveness of a short OCD screener. Paper presented at the 20th annual conference of the International Obsessive-Compulsive Disorder Foundation, Atlanta, Georgia. Whisman, M. A. (2007). Marital distress and DSM-IV psychiatric disorders in a population-based national survey. Journal of Abnormal Psychology, 116, 638–643. Zaider, T. I., Heimberg, R. G., & Iida, M. (2010). Anxiety disorders and intimate relationships: A study of daily processes in couples. Journal of Abnormal Psychology, 119(1), 163–173.
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