Psychiatry and Clinical Neurosciences 2011; 65: 416–422
doi:10.1111/j.1440-1819.2011.02240.x
Regular Article
Perceived burden and quality of life of caregivers in obsessive–compulsive disorder pcn_2240
Sandeep Grover,
MD*
and Alakananda Dutt,
416..422
MD
Department of Psychiatry, Postgraduate Institute of Medical Education & Research, Chandigarh, India
Aim: The study aimed to examine the family burden and quality of life (QOL) of caregivers of patients with obsessive–compulsive disorder (OCD). Methods: A cross-sectional assessment of 50 patients with OCD and their caregivers was carried out. The severity of OCD was assessed using the Yale– Brown Obsessive Compulsive Scale. The caregivers were assessed using the Family Burden Interview Schedule and the World Health Organization Quality of Life BREF version (WHOQOL-BREF). Results: Fifty-six percent of caregivers reported a high objective burden. Severity of illness correlated with burden and impaired QOL of caregivers. Age of patient, longer duration of illness and longer duration of treatment were predictive of poorer QOL of caregivers in the physical health domain. Greater
BSESSIVE–COMPULSIVE DISORDER (OCD) is a chronic and disabling disorder, having a negative impact on the quality of life (QOL) of both the patient1–7 and the caregivers living with the patient.8,9 Studies have also shown that OCD imposes considerable burden on caregivers,10–14 more so than the burden on caregivers of subjects with depression.5 With respect to schizophrenia the findings are contradictory with some reporting more and others reporting similar or lower level of burden in the caregivers of schizophrenia patients compared to that in cases of OCD.6,15–17 This high level of burden
O
*Correspondence: Sandeep Grover, MD, Department of Psychiatry, Postgraduate Institute of Medical Education & Research, Chandigarh 160012, India. Email:
[email protected] Received 14 February 2010; revised 2 May 2011; accepted 25 May 2011.
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objective burden, disruption of family leisure and interaction due to OCD led to significantly poorer QOL in all domains in caregivers. Higher financial burden, perception of poorer mental health, and higher subjective burden were predictive of poorer physical, general health and general and psychological QOL, respectively.
Conclusions: The study provides important insights into the QOL and perceived burden of caregivers of OCD patients. It highlights the need for improving the quality of care not only for patients but also for primary caregivers. Key words: burden, caregivers, obsessive–compulsive disorder, quality of life.
experienced by the caregivers is possibly due to the accommodation the family members have to make specifically in relation to the obsessive–compulsive symptomatology. This includes behaviors such as feeling obliged to assist a relative with OCD when he or she is performing a ritual or respecting the rules that the disorder imposes on the patient and, alternatively, interfering with the rituals or actively opposing them.13 The difficulties encountered by the family members are in the form of disrupted personal and social lives, anger/frustration/fatigue, depression and family conflicts.18 Some studies have also demonstrated that caregivers of OCD patients have a significantly reduced QOL.8,9 However, caregiving is not always perceived as a burden and in recent times some studies on schizophrenia have shown that caregivers also experience some positive aspect of caregiving in the form of becoming more sensitive to persons with disabilities,
© 2011 The Authors Psychiatry and Clinical Neurosciences © 2011 Japanese Society of Psychiatry and Neurology
Psychiatry and Clinical Neurosciences 2011; 65: 416–422
deciding about priorities of life and recognizing their inner strength.19 In a study at our center in subjects with schizophrenia it was observed that caregivers valued good aspects of the relationship with the patient more than the personal positive experiences in the positive domains of the caregiving.20 These positive experiences are considered to be a holding force for the caregivers besides the sociocultural factors. However until now, very little attempt has been made to determine the correlations between the perceived burden and QOL of caregivers of OCD patients in the same sample. Hence the current study was carried out to study the correlations between perceived burden and QOL of caregivers of subjects with OCD. Efforts were also made to study the correlation between the perceived burden and QOL of caregivers and the sociodemographic and clinical variables.
METHODS Subjects A cross-sectional assessment of subjects diagnosed with OCD as per the ICD-1021 and their primary caregivers was conducted. Patients with a comorbid psychiatric disorder, physical disorder, organic brain syndrome or those having another family member in the same dwelling unit suffering from a diagnosed chronic physical illness or comorbid psychiatric disorder were excluded. The mean age of the patients included in the study (n = 50) was 31.2 years (SD 11.05; range 16–62 years). Most of the subjects were Hindu by religion (n = 44, 88%), belonged to nuclear families (n = 31, 62%) and came from an urban background (n = 34, 68%). More than half of the sample were women (n = 29, 58%), and were married (n = 27, 54%); and the average duration of education was 12 years (SD 4.35 years). Slightly less than onethird of the sample was employed (n = 15, 30%). The rest were homemakers (n = 18, 36%), students (n = 14, 28%) or unemployed (n = 3; 6%). The average monthly income of the patients was 4220 (SD 11 006.57) Indian rupees (INR). The most common subtype of OCD in the patient population was mixed thoughts and acts (n = 46, 92%) followed by predominantly obsessive thoughts (n = 3, 6%) and only one subject had predominantly compulsive acts. The mean duration of illness was 83.44 months (SD 83.47) and the patients had been
Impact of OCD on caregivers
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on treatment for an average duration of 40.41 months (SD 65.79). The mean duration of untreated illness was 43.03 months (SD 44.57). At the time of inclusion in the study, the majority of the patients were receiving selective serotonin reuptake inhibitors (n = 48, 96%) with only two patients receiving clomipramine. About one-third (n = 15; 30%) of the subjects were receiving clonazepam in addition to selective serotonin reuptake inhibitors or clomipramine. The mean score on the Yale–Brown Obsessive Compulsive Scale (YBOCS) obsession subscale (n = 50) was 9.8 (SD 3.31), on the compulsion subscale was 8.3 (SD 4.49) and on the total YBOCS score the mean was 18.1 (SD 7.48). To be included as a ‘primary caregiver’ the family member was required to be more than 18 years of age, living with the patient in the same dwelling and being involved in the continuous caring of the patient for at least the last year. Furthermore, the caregiver had to be free from any physical or psychiatric comorbidity (other than tobacco dependence) with the ability to read Hindi in order to fill out the Hindi version of the World Health Organization Quality of life BREF version (WHOQOL-BREF). The primary caregivers (n = 50) had a mean age of 42.92 years (SD 10.71; range 22–68 years), were mostly married (n = 48, 96%) and were mostly men (n = 28, 56%). Most of the primary caregivers were either the parent (n = 22, 44%) or spouse (n = 21, 42%) of the patient. The remaining seven caregivers who had been involved in the regular care of the patients were siblings, children or uncles of the patients. About two-thirds of the caregivers were employed (n = 32, 64%) and the rest were homemakers (n = 18, 36%) with an average education of 12.5 years (SD 3.69). The average monthly family income of the sample amounted to 11 780 INR (SD 6746.25).
Instrument The YBOCS22 is a clinician-rated, 10-item scale, each item rated from 0 (no symptoms) to 4 (extreme symptoms) (total range, 0–40), with separate subtotals for severity of obsessions and compulsions. It has high interrater reliability (0.72–0.98) as well as a high degree of internal consistency among items. The Family Burden Interview Schedule23 is a culturally sensitive semi-structured interview schedule devised for assessment of perceived burden in the caregivers of subjects with psychiatric disorders. It has
© 2011 The Authors Psychiatry and Clinical Neurosciences © 2011 Japanese Society of Psychiatry and Neurology
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24 items grouped under six areas of burden, namely: (i) financial burden; (ii) disruption of routine family activities; (iii) disruption of family leisure; (iv) disruption of family interactions; (v) effect on physical health of others; and (vi) effect on mental health of others. Each item is rated on a 3-point scale: zero indicating no burden, a score of 1 indicating moderate and a score of 2 indicating severe burden. The total score obtained for these six domains is termed as objective burden. In addition, the scale assesses the subjective burden in the caregivers with a standard question: ‘How much would you say that you have suffered because of the patient’s illness – severely, a little or not at all?’ It is a reliable and valid measure of burden and has been used in the past in many studies from India that have assessed burden due to various mental disorders.5,6,10,24 The WHOQOL-BREF version25 is a self-administered psychometrically sound cross-cultural instrument developed in 15 centers across developing and developed countries.26 It is available in the Hindi language26 and evaluates subjective QOL in the past 2 weeks in four domains: physical health, psychological health, social relationship, and environment. It has an additional two items for assessing overall QOL and general health. The 26 items are scored 1–5 to give domain scores, the total score ranging between 26 and 130, a higher score indicating a better QOL. The scale has shown good discriminant validity, concurrent validity, internal consistency and test–retest reliability.26–28
Psychiatry and Clinical Neurosciences 2011; 65: 416–422
Ethical considerations The study was approved by the departmental ethics committee and all the patients and the caregivers were recruited after being informed about the research project and providing written informed consent.
Statistical analysis Mean and SD were computed for continuous variables. Frequency and percentage of categorical variables were calculated. Pearson’s product moment correlation and Spearman’s rank correlation were used for computing correlations of parametric and non-parametric variables, respectively. Comparisons were carried out using the 2-tailed t-test. The significance level for various tests was set at
