Relationship of caregiver burden with coping strategies, social support, psychological morbidity, and quality of life in the caregivers of schizophrenia
Introduction
Schizophrenia is a severe mental disorder, which places a considerable burden on the caregivers. Families experience a lot of physical, emotional and financial distress due to a patient's abnormal behavior, and social and occupational dysfunction. In countries like India, where rehabilitation services are almost non-existent and there is no social security system, the role of the family becomes more important.
Many studies from India have evaluated burden perceived by the caregivers of schizophrenia and these show that schizophrenia is a burdensome illness. Studies which have compared the burden of caregiving of schizophrenia with other psychiatric disorders, suggest that schizophrenia is more burdensome than recurrent depressive disorder (Chakrabarti et al., 1995), bipolar disorder (Chakrabarti et al., 1995, Chakrabarti and Gill, 2002), obsessive compulsive disorder (Thomas et al., 2004) and other neurotic disorders (Chakrabarti and Kulhara, 1999).
However, previous studies from India have mostly used the Family Burden Interview (FBI) (Pai and Kapur, 1981) or Burden Assessment Schedule (BAS) (Thara et al., 1998), which are interviewer based instruments for assessment of burden in caregivers. The primary focus of the FBI is on objective burden, and it is relatively inadequate with regards to assessment of the subjective consequences of caregiving, which is assessed by only one item of the instrument. On the other hand, BAS assesses both objective and subjective burden, but still the major emphasis is on the objective burden.
Over the years, several new burden-assessment instruments have been developed. One such instrument, the Involvement Evaluation Questionnaire (IEQ) was developed to assess the consequences of caregiving, and is based on the stress-appraisal-coping model (Schene et al., 1996, Schene et al., 1998). Being a self report scale, the IEQ evaluates the ‘consequences of caregiving’ and reflects the caregivers’ perception of burden without distinguishing between the objective and subjective aspects. Recently this instrument was adapted and evaluated for the psychometric properties in the Indian setting and has been shown to have good internal consistency and reliability (Grover et al., 2011).
Studies suggest that the level of caregiver burden is commonly associated with levels of dysfunction or disability, severity of symptoms and duration of illness (Raj et al., 1992; Chakrabarti et al., 1995, Kataria et al., 2002, Rammohan et al., 2002a, Saldanha et al., 2002, Creado et al., 2006, Thomas et al., 2004, Kalra et al., 2009). Findings with regard to association of burden with sociodemographic variables have been inconsistent. The general trend is that the caregiver burden is higher when the patient is male, caregiver is female, caregiver is less educated and in those from a low-socioeconomic background (Roychaudhuri et al., 1995, Rammohan et al., 2002a, Rammohan et al., 2002b, Kumar and Mohanty, 2007, Nehra et al., 2006, Chakrabarti, 2010). Studies evaluating the relationship of burden with coping suggest that uses of denial and other emotion-focused strategies are associated with higher burden (Sekharan et al., 2001, Rammohan et al., 2002a, Creado et al., 2006). However, as mentioned, most of the Indian research is based on instruments which mainly assess objective burden, while the subjective burden is rarely being the major focus.
As there is lack of data on subjective burden as a consequence of caregiving on schizophrenia from India, the present study, aimed to (1) Evaluate the relationship of caregiver-burden and coping strategies, social support, psychological morbidity and quality of life of caregivers of patients with schizophrenia. (2) Study the relationship of caregiver burden with sociodemographic variables and clinical variables including severity of psychopathology and level of functioning of patients with schizophrenia.
Section snippets
Setting and study population
The study was conducted in the psychiatry department of a multi-specialty hospital catering to a large section of the population of north-India. The study was approved by the Ethics Committee of the Institute. All participants were recruited after obtaining proper written informed consent. A cross-sectional study design was employed. The patients were assessed only once at the time of intake into the study. The study included 100 patients with schizophrenia along with their caregivers. The
Socio-demographic profile
The sociodemographic profile of the patients and caregivers is displayed in Table 1. About half of the caregivers were parents (51%), while 22% were spouses and 20% were siblings. Caregivers had been performing the role of a primary caregiver for the last 5.2 years (range 1–10 years) and on an average spent about 3 h each day in providing care to the patient. Caregivers accompanied their patients during the 93% of follow up visits in the previous three months and 73% were supervising the
IEQ as an instrument to assess burden
Many studies from India have evaluated burden on the caregivers of patients with schizophrenia or other disorders. Most of these studies have used the FBI and others have relied upon instruments like the BAS. Both these instruments primarily assess objective burden. However, in recent times, burden is understood in the stress-coping appraisal model, which is one of the dominant paradigms of conceptualizing caregiver-burden (Whalen and Buchholz, 2009, van Wijngaarden et al., 2000, van
Conclusion
To conclude, findings of the present study suggest that caregivers of schizophrenia experience considerable level of burden. The pattern of caregiver burden is slightly different from that reported in studies from the West. The lower total IEQ scores seen in studies from India compared to that reported in studies from the West suggests that there are cultural differences in as to how family members react to the mental illness of their relatives. Due to the relatively close knit family structure
Funding
None.
Conflict of interest
None.
Acknowledgement
We are thankful to the patients and their caregivers for their participation.
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