|Year : 2022 | Volume
| Issue : 1 | Page : 86-92
Coping in caregivers of obsessive–compulsive disorders
Erika Pahuja1, Anil Nischal2, Anuradha Nischal3, Manu Agarwal2, Bandna Gupta2, Adarsh Tripathi2
1 Department of Psychiatry, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
2 Department of Psychiatry, King George's Medical University, Lucknow, Uttar Pradesh, India
3 Department of Pharmacology, King George's Medical University, Lucknow, Uttar Pradesh, India
|Date of Submission||27-Jun-2020|
|Date of Decision||19-Jul-2020|
|Date of Acceptance||09-Aug-2020|
|Date of Web Publication||30-Mar-2022|
Dr. Manu Agarwal
Department of Psychiatry, King George's Medical University, Lucknow, Uttar Pradesh
Source of Support: None, Conflict of Interest: None
Background: Obsessive Compulsive disorder (OCD) is potentially a disabling disorder not only for the patients, but also for their family members, generating an additional burden on caregivers. Burden of care on caregivers may impact their family dynamics and affect the course of the illness. This perception of burden may largely depend on the coping strategies used by the caregivers. Studies have demonstrated that coping varies with socio-demographic variables but there is a dearth of research on coping strategies used by caregivers of OCD in India. Aims: To study coping in caregivers of OCD and its association with socio-demographic variables of caregivers and clinical variables of the illness. Method: Sixty seven caregivers of OCD were assessed on Cope Inventory. Association of experience of coping with socio-demographic variables of caregivers as well as patients and clinical variables of patients was studied. Result and Conclusions: Adaptive coping strategies like “Positive reinterpretation and Growth” and “Active Coping” were used more by males; student, clerical/ shop owner/ farmer; and caregivers of patients with OCD, with mixed obsessional thoughts and acts. Maladaptive coping strategies like “Focus on Venting of Emotions” was used more by caregivers of patients with severe illness. “Acceptance” was used more by young caregivers, spouses and caregivers of patients who received adequate treatment for last 3 months. Considering, adaptive coping efforts may provide protection from stressor of having a family member with OCD, there is an equal need to focus on caregivers along with patients. Training caregivers to use adaptive coping strategies, family interventions, psycho-educating targeted caregivers may lower the burden of illness and help caregivers to appraise the caregiving more favorably rather than taxing.
Keywords: Burden, caregivers, coping, obsessive–compulsive disorder
|How to cite this article:|
Pahuja E, Nischal A, Nischal A, Agarwal M, Gupta B, Tripathi A. Coping in caregivers of obsessive–compulsive disorders. Indian J Soc Psychiatry 2022;38:86-92
|How to cite this URL:|
Pahuja E, Nischal A, Nischal A, Agarwal M, Gupta B, Tripathi A. Coping in caregivers of obsessive–compulsive disorders. Indian J Soc Psychiatry [serial online] 2022 [cited 2022 May 25];38:86-92. Available from: https://www.indjsp.org/text.asp?2022/38/1/86/341333
| Introduction|| |
Obsessive–compulsive disorder (OCD) is potentially a crippling disorder not only for the patient but also for his/her family. OCD runs a chronic and disabling course, causes significant distress, and impedes patient's as well as family members' social, familial, and occupational functioning. This disorder generates an additional burden for relatives, which may, in turn, affect the family dynamics and impair the evolution of the disease, consequently presenting challenge to both the patient and the family system. Marital discord, frustration, and financial strain are common results of the stress that OCD places on both the patient and his/her family members.,, Families of a patient with OCD are different from families of patients with other severe mental illnesses due to the entanglement of family members in the core symptoms of the disorder. This entanglement also affects the course of the illness. Studies evaluating the responses of family members of patients with OCD revealed that family members perceive feelings of frustration, anger and guilt, and loss of social activities with other family members.
Lazarus and Folkman gave the “Cognitive Theory of Psychological Stress and Coping” in 1984. The theory states that the interaction between a person and his/her environment is dynamic, mutually reciprocal, and bidirectional. Stress is conceptualized as a relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and as endangering well-being. The theory enumerates cognitive appraisal and coping as critical mediators of stressful person–environment relationships. Coping refers to the person's cognitive and behavioral efforts to manage (reduce, minimize, master, or tolerate) the internal and external demands of the person–environment transaction that is appraised as taxing or exceeding the person's resources. Coping can be divided into two types–problem focused and emotion focused. Dealing with the problem involves problem-focused coping and regulating emotions involves emotion-focused coping. People use both forms of coping in virtually every type of stressful encounter. Coping strategies can also be divided as adaptive, maladaptive, and both. Novelty, predictability, duration, uncertainty about the timing of occurrence, and timing in relation to the stressor are properties which determine appraisal of a situation as stressful and taxing., Considering the unpredictable nature of symptom setbacks, the uncertainty of course of illness, and the family's lack of control over the course of the disorder, clearly, OCD in a loved one increases the probability that the situation will be appraised as stressful and taxing. The Glynn and Liberman model of adjustment in relatives of the mentally ill also proposed that psychiatric illness in the family functions as a chronic stressor to which family members must adjust. Accordingly, efforts to use adaptive coping strategies may provide a protection from the stress of illness in a relative. As evidenced in multiple Western studies despite the heavy practical and emotional toll exerted by having a family member with OCD, there is a paucity of systematic attempts to study coping strategies used by caregivers of OCD in India.
Stengler-Wenzke et al. conducted narrative interviews of 22 family members of patients with OCD. They established that relatives described different burdens and developed different strategies to cope with these. While parents tried to educate their children, spouses focused on the patient's resources. The attempts of family members to cope with patients with OCD included assisting in rituals, opposing the symptoms, and supporting patients in dealing with the illness. Derisley et al. conducted a study to compare mental health, coping, and family functioning in parents of young people with OCD, anxiety disorders, and no known mental health problems. They concluded that parents of adolescents in the clinical groups used more coping strategies overall than the nonclinical group. Parents of children with OCD used significantly more cognitive and behavioral avoidance strategies than nonclinical parents. Geffken et al. examined the relationships between hope, coping strategies, and depressive symptoms in a heterogeneous sample of 67 spouses/primary caregivers of individuals with a history of OCD. Hope was negatively related to depressive symptoms, symptom severity, and denial disengagement coping strategies and positively related to active reframing and social support coping strategies. Active reframing social support, and religiosity were negatively related to depressive symptoms. Denial/disengagement was positively associated with depressive symptoms. Coping mediated the relationship between hope and depressive symptoms.
It appears from the above mentioned studies that coping may differ according to sociodemographic variables of caregiver and clinical variables of the illness. There is a dearth of research in this area, and we did not find any Indian studies evaluating coping in caregivers of OCD. Our study intends to assess coping in caregivers of OCD and its association with sociodemographic variables of caregiver and clinical variables of the illness.
| Materials and Methods|| |
The sample was drawn from the patient population attending the psychiatry outpatient department of a medical university in North India. Out of a total of 206 patients and caregivers screened, 67 caregivers and their respective patients, meeting selection criteria for the study, were recruited. The diagnosis of OCD was made as per ICD-10 DCR. “Caregiver” for the purpose of the study was defined as “A family member of the patient who is living with the patient in the same household, spending time with him/her and shouldering responsibility of his/her care for majority of the time since at least last 1 year.” The study was approved by the Institutional Ethics Committee of the Medical University.
Yale–Brown Obsessive–Compulsive Disorder Scale
The Yale–Brown Obsessive–Compulsive Disorder Scale (YBOCS) is a reliable and valid instrument to measure the severity of symptoms of OCD that is not influenced by the type of obsessions or compulsions present. The scale is a clinician-rated, 10-item scale, and each item rated from 0 (no symptoms) to 4 (extreme symptoms) is rated (total range, 0–40), with separate subtotals for the severity of obsessions and compulsions. The severity of obsessions and compulsions is assessed in the dimensions of time spent, interference, distress, resistance, and control over obsessions/compulsions. A score of less than 16 is mild OCD, 16–23 is moderate OCD, 24–31 is severe OCD, and 32–40 is extreme OCD.
COPE Inventory (Carver et al., 1989)
It is a multidimensional coping inventory to assess different ways in which people respond to stress. It consists of 15 scales, all consisting of four items, graded on a Likert scale from 1 to 4 (1 = I usually don't do this at all, 2 = I usually do this a little bit, 3 = I usually do this a medium amount, and 4 = I usually do this a lot) The scales, according to Carver et al., are arbitrarily divided into:
- Adaptive or functional
- Positive reinterpretation and growth (PRG)
- Active coping (AC)
- Suppression of competing activities (SCA)
- Use of instrumental social support (ISS)
- Religious coping (RC)
- Use of emotional social support (ESS)
- May be adaptive or maladaptive: Acceptance
- Maladaptive or dysfunctional.
- Mental disengagement (MD)
- Focus on and venting of emotions (FOVE)
- Behavioral disengagement (BD)
- Substance use (SU).
In our study, we have used the “present tense progressive” format for assessing the coping strategies of the caregivers. We used the Hindi version of the scale which was prepared by Doval et al. by translation–retranslation method and was used in their study, Experience of Caregiving and Coping in Caregivers of Schizophrenia, conducted at our center. The application of COPE Inventory was assisted by one of the co-authors.
Descriptive statistics were used to calculate means, standard deviation, and frequencies. Independent samples t-test was applied to compare coping among different gender, domicile, religion, family type, OCD subtype, age at onset, and treatment over the last 3 months. One-way analysis of variance (ANOVA) was used to compare coping between caregiver age groups, level of education, occupation groups, marital status, caregivers' relationship, duration of caregiving, severity of OCD, and duration of illness. In case P value of one-way ANOVA was found significant, Tukey's post hoc test was used to identify the pairs between whom differences were significant. The The Statistical Package for the Social Sciences version 23 (SPSS-23, IBM, Chicago, USA) was used.
| Results|| |
Majority of the caregivers were male (70.1%), with a mean age of 39.7 ± 10.34 years, whereas gender distribution among patients was fairly uniform (males: 49.3% and females: 50.7%), with a mean age of 30.09 ± 7.93 years. Most of the caregivers were spouses (49.3%), followed by parents (31.3%), and had a mean duration of caregiving of 6.10 ± 4.38 years. Only 4.5% of the caregivers were illiterate. The mean years of education of patients was 11.13 ± 4.55 years. Around 38.8% of the caregivers were employed as clerical/shop owner/farmer, whereas a maximum patient sample comprised homemakers (35.8%). Majority of the caregivers (82.1%) as well as patients (55.2%) were married. Majority of them belonged to urban (59.7%), Hindu (77.6%), and nuclear family (58.2%) and were fairly uniformly distributed over different income subgroups [Table 1].
Majority of the patients with OCD had mixed obsessions and compulsions type (F42.2) (86.6%), with a mean YBOCS score of 26.06 ± 5.53 indicating severe illness. The mean duration of illness was 7.10 ± 5.5 years. The mean age of onset of illness for patients in this study was 25.62 ± 7.17 years. An approximate estimate of adequacy of treatment was made, and patients who were on medications for OCD in adequate dose for the last 3 months and had taken at least approximately 75% of the prescribed dosages (on self-report/caregiver's report) were considered receiving adequate treatment. Around 55.2% of the patients had received adequate treatment over the last 3 months [Table 2].
Caregivers of patients with OCD used both adaptive and maladaptive coping strategies with individual differences among varying sociodemographic profile. Among the adaptive coping strategies, “PRG” was being used the most, followed by “AC” and “planning.” The “use of ISS” was being used the least. “Humor” was practically not being used at all. Hence, the use of humor has not been studied further. Among the maladaptive coping strategies, “FOVE” was used the most. “BD” and “SU” coping strategies were practically not being used at all. Hence, the use of BD and SU has not been studied further. Acceptance which can be used both as adaptive and maladaptive coping strategies was used by our sample population [Table 3].
The use of coping strategies was found to be influenced by some sociodemographic variables of caregivers and clinical variables of patients.
The use of PRG (t = 7.434, P ≤ 0.001), AC, and MD differed significantly across genders with males using more PRG, AC (t = 4.839, P ≤ 0.001), and MD (t = 2.623, P = 0.011) as compared to females. Acceptance was used significantly more in the younger age group of caregivers (<40 years). The use of ESS (t = 2.13, P = 0.037) and MD (t = 2.141, P = 0.036) differed significantly across different domicile groups with rural caregivers using them more as compared to urban caregivers. The use of ESS (P = 0.049) was significantly higher in caregivers with 1–5 years of education as compared to >15 years of education. Occupation categories were taken as per the Modified Kuppuswamy Scale. Responsibilities of students and homemakers are different as compared to unemployed, and hence, these were taken as separate categories., The use of PRG, AC, and MD differed significantly across different occupational groups with clericals/shop owners/farmers using more PRG and AC as compared to homemakers and more MD as compared to semi-professionals/professionals. Furthermore, unemployed, unskilled/semiskilled workers used significantly higher PRG as compared to homemakers. The use of restraint and SPA differed significantly across marital status groups. Restraint was used maximally by unmarried, followed by married and least by widow/divorced caregivers, and SCA was used significantly more by married caregivers (P = 0.027) as compared to widow/divorced. The use of MD was significantly higher in caregivers with monthly family income more than 30,000. The use of acceptance was significantly more in spouses of patients as compared to parents.
Assessment of COPE Inventory according to clinical variables revealed the following results.
The use of PRG and AC differed significantly across OCD subtype groups with caregivers of patients with mixed OCD using higher PRG and AC. The use of PRG, SPA, and FOVE differed significantly across the severity of OCD groups. Caregivers of patients with severe OCD used more PRG, SPA, and FOVE as compared to caregivers of patients with moderate OCD. The use of acceptance was significantly more in caregivers of patients on adequate treatment over the last 3 months.
| Discussion|| |
It is interesting to know how people respond when they confront difficult or stressful events in their lives, like living with a person with mental illness. The duration of illness of patients enrolled in our study ranged from 1 to 30 years. It is possible that over time coping strategies change as per the status of illness and its perception by family members, accounting for the use of a large variety of coping strategies in our sample. Of the 15 coping strategies assessed by the COPE Inventory, caregivers in our study reported using twelve.
Among the adaptive coping strategies, the sample population of our study used “PRG,” “RC,” and “ESS” which are emotion-focused coping strategies and “AC,” “planning,” “SCA,” “restraint,” and “ISS” which are problem-focused coping strategies. Humor is an adaptive coping strategy which was practically not used by our sample population. Among the maladaptive coping strategies, our sample used “FOVE” which is an emotion-focused coping strategy and “MD” and “denial” which are avoidant coping strategies. “BD” and “SU” were practically not used by our population. “Acceptance” coping strategy may be used as an adaptive as well as maladaptive coping strategy and was used by our population.
Association between coping strategies and sociodemographic and clinical variables
In our study, we analyzed differences in the use of coping strategies as per sociodemographic variables of caregivers.
We found that among the adaptive coping strategies, emotion-focused coping strategy “PRG” and problem-focused coping strategy “AC” was used more by males as compared to females. Among maladaptive coping strategies, male caregivers used more “MD” as compared to females. The traditional male gender role prescribes attributes such as autonomy, self-confidence, assertiveness, instrumentality, and being goal oriented, whereas the traditional female gender roles prescribe dependence, affiliation, emotional expressiveness, lack of assertiveness, and subordination of one's own needs to those of others. These basic differences in traditional gender roles may be responsible for the differences in handling stress in different genders. This accounts for gender differences in the use of coping strategies and explains more use of “PRG” and “AC” in males.
In our study, we found that caregivers in the age group of 18–30 years and 31–40 years used “acceptance” more as compared to 51–60 years and the age group of 31–40 years used “acceptance” more as compared to 41–50 years. A similar finding was reported in a study by Whitty in 2010, wherein coping strategy “accepting responsibility” was used more by the younger age group than the older groups.
Our study revealed that rural caregivers used “ESS” and MD more as compared to the urban population. Similar findings were found in other studies in which the rural population used more social support as compared to the urban population. These differences may be due to differences in nonnormative stressors in different atmospheres.
There was a significant difference in the use of ESS as per years of education. Caregivers with 1–5 years of education used it more than caregivers with >15 years of education. A similar finding was obtained in a study by Doval et al. on caregivers of patients with schizophrenia, wherein the use of ESS was negatively correlated with years of education suggesting higher dependence on social support and sympathy gaining in less educated population.
There were significant differences in the use of coping strategies in relation to occupation of caregiver. Unemployed, unskilled/semiskilled, clerical/shop owner/farmer used “PRG” more as compared to homemakers. Clerical/shop owner/farmer used “AC” more as compared to homemakers. These findings may be a reflection of gender differences in the use of coping strategies as majority of the caregivers in unemployed (85.71%), unskilled/semiskilled (100%), and clerical/shop owner/farmer (96.15%) were male. MD was used more by clerical/shop owner/farmer as compared to semi-professional/professional.
Difference in the use of restraint and SCA coping strategy was found in relation to marital status of caregivers. Restraint involves waiting for an appropriate opportunity to act instead of acting prematurely and was used maximally by unmarried, followed by married and then widow/divorced caregivers. This is against the general thinking that restraint increases with maturity as the mean age of unmarried caregivers was 27.13 ± 4.97, mean age of married caregivers was 41.04 ± 9.86, and mean age of widow/divorced caregivers was 46.5 ± 5.45. Hence, this finding could not be explained.
Acceptance coping strategy was used more by spouses as compared to parents which may be reflection of difference in the use of acceptance coping strategy in different age groups as the mean age of spouses is 35.94 ± 7.57 and mean age of parents is 51.05 ± 4.34.
The use of PRG and AC differed significantly across OCD subtypes. Caregivers of patients with mixed OCD used more PRG and AC as compared to caregivers of patients with predominant obsessions. This can be explained as patients with mixed OCD had a higher YBOCS score of 26.79 ± 5.29 as compared to predominant obsessional thoughts and ruminations (YBOCS score – 21.33 ± 4.9) and caregivers of mixed OCD tend to be more involved in compulsions of patients illness as compared to patients with predominant obsessions which may be responsible for caregivers taking active steps for problem resolution accounting for higher scores on adaptive scales of AC. More involvement of caregivers with patients of mixed OCD as compared to OCD with predominant obsessions, may be responsible for caregivers being enriched from their experiences hence viewing them in positive light implying higher score on PRG. This also explains more use of PRG by caregivers of severe OCD as compared to moderate OCD. Caregivers of severe and extreme OCD patients suppressed their attention to other activities in order to concentrate on dealing with the problem accounting for higher scores on SCA.
Coping strategy Acceptance was used more by caregivers of patients receiving adequate treatment in the last 3 months as compared to caregivers of patients receiving no/inadequate treatment in the last 3 months. In this context, it appears that acceptance was being used as an adaptive coping strategy as active steps like seeking adequate treatment were being taken by caregivers.
Conclusion and Clinical Implications
Caregivers of patients with OCD use a variety of adaptive and maladaptive coping strategies. The use of coping strategies varies with sociodemographic profile of caregivers and clinical variables of patients. As seen in our study, adaptive coping strategies such as “PRG” and “AC” were used more by male caregivers, student, clerical/shop owner/farmer, and caregivers of patients with OCD, with mixed obsessional thoughts and acts. Maladaptive coping strategies like “FOVE” were used more by caregivers of patients with higher severity of illness. “Acceptance” was used more by caregivers in the younger age group, spouses, and caregivers of patients receiving adequate treatment for the last 3 months. The use of wide spectrum of adaptive coping strategies by caregivers denotes that caregiving does not have to be a lugubrious task. As described earlier, coping efforts may provide protection from stressor of having a patient with OCD in family, and there is a need to focus on caregivers along with patients of OCD. Training caregivers to use adaptive coping strategies, family interventions supporting both patient and caregiver, and psycho-educating targeted caregivers may lower the burden of illness and may help caregivers to appraise the caregiving experiences more favorably rather than taxing. This may be done by involving caregivers in treatment process, recording daily goals of patients, and establishing support groups for caregivers, wherein they may be taught about using adaptive coping strategies and adapting appropriate supportive behaviors.
- Small sample size, which may affect generalization of results
- Patients with YBOCS score <16 were not included due to which most patients with OCD, predominantly obsessional thoughts and ruminations (F42.0), were excluded, and hence, generalization of results to caregivers of patients with OCD, predominantly obsessional, may be questionable
- As no data on coping in Indian caregivers of OCD were available, this study was planned to assess coping strategies used by caregivers of patients with OCD. We did not plan to explore the reasons for using or not using a particular coping strategy. This may be planned in future studies.
- The association between coping strategies and sociodemographic characteristics is preliminary, and appropriate interpretation of these would be better accomplished by a study specifically designed to assess caregiver factors such as caregiver personality and ongoing stressors
- Exploration of reason for using/not using a particular coping strategy may be done.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]