Integrated Psychosocial Intervention in Schizophrenia: Implications for Patients and Caregivers

Introduction
Indian families have been typically described as often believing in causes like supernatural forces and therefore seek help from magico-religious healers observe Srinivasan & Thara (2001). Beliefs about the causation of schizophrenia could influence the attitudes patients' families adopt towards the patient and may also influence their help-seeking behaviour. This is particularly true of rural and semi-urban populations in India and those hailing from an orthodox and very religious background who throng religious centers of healing in search of a desperate cure for mental illness.

Schizophrenia is a severe mental illness, which is stressful not only for patients, but also for family members. Providing care to family members dealing with chronic illness may result in feelings of burden or strain for caregivers that can diminish their quality of life (Sales, 2003). Numerous studies have demonstrated that family caregivers of persons with a severe mental illness suffer from significant stresses, experience moderately high levels of burden, and often receive inadequate assistance from mental health professionals (Saunders, 2003). Martens & Addington (2001), observe that family members are significantly distressed as a result of having a family member with schizophrenia and Ivarsson et al. (2004) contend that family caregiver burden is complex and includes several areas such as activities in daily life, worry and social strain. Effective family functioning in families with schizophrenia may be influenced by a variety of psychosocial factors (Saunders, 2003). Family conflict and family intimacy have been found to reflect the degree of burden or reward experienced and it is suggested that the family system, as the context within which the patient exists, be seen as the mediating environment for caregiving burden and reward (Heru, 2000).

Identifying predictors of family burden in caregivers of patients with schizophrenia has been the focus of several investigations. Lanzara (1999), found that disability is the main predictor of family burden whereas manic and positive symptoms, time spent by the carer with the patient and carer's social support are less important. Satisfaction with mental health services is predicted by family burden. Disability related to work and sexual problems is frequent while social withdrawal, under activity, lack of participation in household duties and lack of self-care are less frequent. Family burden is severe in one third of relatives, mainly in social relationships. Solomon & Draine (1995), opine that the best set of predictors of burden, identified by stepwise linear regression, was young patient age, awareness of patient's suicidal ideation, and family resources. Mc Donell et al. (2003), found that 39% of the variance in subjective burden was explained by the severity of stressors related to the relative's illness and by mediators related to social support and coping capabilities.

Lauber et al. (2003), are of the view that the most important predictor of burden is burden in the relationship between caregiver and the affected representing the changes in the relationship occurring in acute illness. Threats, nuisances, time spent with the affected, and burden due to restricted social life and leisure activities were additional predictors. Winefield and Harvey (1994), observe that burden in the sense of interference in their daily lives was most marked for those caregivers who were in high contact with the patients. Stengard et al. (2000), found that caregivers were more likely to be dissatisfied with the situation if they lived with the patient and if the patient's functional state was poor or the patient's use of services, particularly medication and rehabilitation was low. Psychological well being of carers is affected by the dimensions of perceived burden (Madianos et al., 2004). Psychological impairment was related with high levels of burden and negative family atmosphere. Previous admissions and duration of illness were also found to predict burden. Winefield and Harvey (1993), found that caregiver psychological distress was high and the level of behavioral disturbance in the sufferer was found to contribute to caregiver distress after controlling for the caregiver's age, sex, and social supports. In general, changes in the parents' burden level are closely interconnected with the illness curve of the patients, and Jungbauer et al. (2003), observe that parents of continuously and severely affected patients are overloaded with their long-term caring tasks.

It is also seen that parents and spouses perceive the caregiver burden differently, although there are some apparent similarities (Lauber et al., 2003). Jungbauer et al. (2004), hold that the spouses not only face illness-specific burdens but also burdens resulting from their partnership and family roles. The chronic burden of everyday living can profoundly reduce the quality of life and the subject's satisfaction with the partnership.

Thornicroft et al. (2004), found that low quality of life in schizophrenic patients was associated with: anxiety, depression, psychotic symptoms, more previous psychiatric admissions, alcohol abuse, having no reliable friends nor daily contact with family, being unemployed, and having few leisure activities. The most frequently occurring unmet needs among the patients were: daytime activities, company and intimate relationships, psychotic symptoms, psychological distress, and lack of information. The most common worries of relatives were about the patient's health, and their own future, safety and financial position.

In a study from Germany, Angermeyer et al. (2000), report that more than half the participants expressed the need for more support and complained of not having enough opportunities to relieve their burden. Hence there is a distinct need to understand the extent and nature of burden experienced by the caregivers of schizophrenics and to initiate measures during intervention to enhance their quality of life.

Though there are several crossectional studies in the literature that have investigated family burden and quality of life in caregivers of patients with schizophrenia, it is seen that not many prospective studies have investigated change in these variables prior to and after intervention and such studies are woefully inadequate in the Indian context. This study attempts to address this lacuna and is a comparative pre and post intervention analysis that seeks to determine the extent of change in psychiatric symptomatology in schizophrenic patients attending a community based rehabilitation programme and the family burden and perceived quality of life of their caregivers.

Material and Method
Objectives

Duration:
The stay period is for a minimum of 48 days to a maximum of 90 days for the patients and their caregivers.
Professional team members: Psychiatrist, psychiatric social workers, occupational therapist, Nurses.

Research Design
This is a quasi-experimental study since no control group has been deployed nor have subjects been assigned randomly to an experimental and a control group as in a true experimental study (Judd & Kenny, 1981). It uses a single subject design comprising of a group of schizophrenia patients as well as their caregivers and compares pre-intervention baseline data with that following intervention in both groups. The attempt has been to bring out changes if any in the mental health status of the patients as well as the burden and QOL of their caregivers following intervention.

Selection of Respondents
Data was collected from thirty consecutive patients and their caregivers based on the following criteria:

Inclusion criteria for the patients
1.   Patients should have been diagnosed schizophrenia (F20) (using ICD – 10 Diagnostic criteria, WHO 1992)
2.   Patients should be above 20 years of age.
3.   Patients should be co-operative for data collection.

Inclusion criteria for the caregivers
1.   An adult aged 20 years or more
2.   He / she should be of first or second – degree relationship to the patient.
3.   Should be the attendant of the patient during the entire stay in the community care center and also should care for the patient after discharge.
4.   Willing to co-operate and provide consent for the study.

The exclusion criteria for the caregivers and patients
1.   Caregiver should be free from psychiatric or physical disorder which might interfere with the care of patients and his / her co- operation during interviews.
2.   Any other co- morbid psychiatric diagnosis in the patient like dementia, OCD, Substance abuse (excluding tobacco use).

Instruments
1.   Family Burden Scale by Pai and Kapur (1983).
2.   Perceived Quality of Life Scale by Patrick et al., (1998).
3.   Positive and Negative Syndrome Scale (PANSS) by Kay (1986).
4.   Self-prepared interview schedule to elicit socio-demographic data and clinical particulars.

The PANSS was administered to the patients for assessment of symptomatology and the remaining instruments to the caregivers. All instruments were administered twice; first at the time of admission and later after intervention during the first follow up contact 30 days after discharge from the center.

General Background of the Caregivers
The majority of the caregivers were female (53.3%) and their age ranged from 23 to 75 years with a mean age of 54.9 years. While the majority of them were parents (76.7%), 16.7 per cent of the caregivers were spouses and the remaining (6.6%) were siblings of the patient. The majority of the caregivers were married (70%) and had availed of basic school level education. Their mean income per month was Rupees.1408.80.(approx.32 $).

Profile of the Patients:
The age of the patients ranged from 21 to 50 yrs with a mean age of 32.7 years. The majority of them were female (53.3%) and were unmarried (66.7%) and had availed of school education. Seventy per cent of them were not employed while the remaining were earning and had a mean income of Rs. 533.30 per month. The majority of them hailed from nuclear families (76.7%) and had a mean family size of 3.8. Half of them belonged to the first two ordinal positions in their family. All of them had a F20 diagnosis and the majority were said to have the illness for 5 to 10 years (63.3 %). The majority of them manifested the disorder before the age of 22 and sixty per cent reported being treated for a duration up to 5 yrs. The majority (70%) reported irregular treatment and had a history of multiple hospitalizations prior to their admission at Gunaseelam. For 46.7% of them this was the first instance of hospitalization.

Results & Discussion
Data analysis was done by using SPSS (Ver. 10.0). The data was subjected to statistical procedures such as t- test, ANOVA, Scheffe procedure and Karl Pearson’s correlation.

Psychiatric Symptomatology in the Patient

The data in Table No. 1 reveals a statistically significant improvement in terms of psychiatric symptomatology at first follow up. This is indicated by the considerable reduction in mean scores obtained on all the sub-dimensions of the PANSS as seen in the table. The efficacy of the intervention carried out is vindicated by the t-values, which show a significant difference prior to and after intervention. Magliano et al., (2005), have found that the provision of psycho educational intervention was associated with a statistically significant improvement in patients symptoms. Similarly a study from China has found that family education on schizophrenia was effective in improving knowledge and promoting improvement in patients’ symptoms and functioning (Zheng Li & David Arthur, 2005).

Family Burden & Quality of Life of the Caregivers

The figures in Table No. 2 show that there is a statistically significant difference in the status of the caregivers before and after intervention vis-à-vis the burden experienced by them as well as their quality of life as revealed by the t-test. Further it is observed that there is a reduction in the mean score values on the overall burden score as well as all its sub-dimensions following intervention, at first follow up. In a similar study Moller-Leimkuhler (2005), found that though there was a considerable level of burden in most of the relatives at 1-year follow-up, a significant reduction in objective and subjective burden was seen while compared to their baseline status. The effectiveness of intervention in schizophrenic patients has been demonstrated in a study by Magliano et al., (2005), who found that the provision of psycho educational intervention was associated with a statistically significant improvement in family burden and coping strategies. It is also seen in Table No.2 that the mean scores have increased on the overall quality of life score and its three sub-dimensions, indicating an enhanced quality of life in the caregivers after intervention. This finding is in consonance with that of Moller-Leimkuhler (2005), who found significant improvements in well-being, self-rated symptoms and subjective quality of life in two-thirds of the relatives of patients with schizophrenia. Foldemo et al., (2005) have found that parents of schizophrenic patients were significantly less satisfied with their overall quality of life. Chadzynska (2003), who assessed quality of life in schizophrenic patients as well as their caregivers, found that both have a tendency to evaluate QOL similarly.

Analysis by Gender of the Patient
The next analysis was done by computing ANOVA values for the caregivers based on the gender of the patients before and after intervention.

It is seen in Table No. 3 that the F values show a statistically significant difference on the overall family burden score of the caregivers as well as their overall quality of life. Statistically significant differences are also seen in terms of all the sub-dimensions of both these variables except for the social component of the QOL scale. However, Alptekin et al. (2004) did not obtain significantly different quality of life scores between relatives of patients and those of control subjects, but found that quality of life of patients was negatively correlated with the severity of their psychopathology and the extrapyramidal side effects induced by antipsychotic drugs .

Following the ANOVA, the data was further subjected to posthoc Scheffe analysis to ascertain if there were significant differences for caregiver scores based on the gender of the patients before and after intervention and these results are posted in Table No. 4.

The results in Table No. 4 reveal that there is a highly significant statistical difference for the overall family burden scores of the caregivers of both male and female patients before and after intervention. This significant difference is manifested for all the sub-dimensions of the family burden scale except with regard to financial burden where the before and after scores for both the sexes of the patients is not statistically significant. Similarly while a significant difference is seen for female patients before and after intervention in terms of family leisure, the same is not the case for the caregivers looking after male patients. It is important to note that the mean score difference (I – J) for the overall family burden score as well as all its sub-dimensions is positive for both male and female patients. This indicates that the scores prior to intervention (I) were higher than those following intervention (J). The reduced J values point to a diminishing family burden on all sub-dimensions in the caregivers following intervention regardless of the gender of the patient. Similarly the mean score difference (I – J) values for the overall QOL score and all its sub-dimensions is negative for both male and female patients, indicating that scores prior to intervention (I) were lower than those following intervention (J) thus showing enhanced QOL status in the caregivers following intervention regardless of the gender of the patient.

When caregivers were compared with regard to their mean FB and QOL scores, it was seen that those caring for female patients scored higher on both these dimensions both before and after intervention (Table No. 5). Though this appears paradoxical, it indicates that though caregivers of female patients experience greater burden, they also manifest better quality of life than those caring for male patients. Consistent with this study, Winefield and Harvey (1993), also found that those caring for female sufferers reported greater distress than those caring for males. Similarly, Thornicroft et al. (2002) did not find support for their hypothesis that caregivers of male patients will show higher rates of psychological distress, and higher scores for 'supervision' and 'urging' than caregivers of female patients.

Analysis by Gender of the Caregiver
A similar analysis was done by computing ANOVA values and Scheffe analysis, this time based on the gender of the caregivers and the results are tabulated in Table No. 6.

Comparison of data based on the gender of the caregivers before and after intervention reveals a highly significant statistical difference among all four groups in terms of their overall family burden as well as QOL scores. A similar difference is seen with regard to all the sub-dimensions of both scales except for financial burden and the social domain of QOL. While the ANOVA values are based on mean score comparison of the four groups studied, the Scheffe results helps to identify the precise status of the caregivers based on their gender before and after intervention.

It is seen that there is a highly significant statistical difference for both male and female caregivers before and after intervention (Table No. 7). This difference is also seen with regard to all the sub-dimensions of the family burden scale except for financial burden. In terms of the overall QOL score, while female caregivers show a significant difference before and after intervention, the same is not observed for male caregivers. Further while female caregivers show a significant difference before and after intervention on the physical domain of QOL, no such differences are seen on the remaining sub-dimensions of QOL for both male and female caregivers. It is also to be noted that the mean difference values (I – J) for the overall family burden score as well as its sub-dimensions is positive whereas it is negative for the overall QOL score and its sub-domains. This indicates reduced family burden and enhanced QOL following intervention for both male and female caregivers.

Table No. 8
INTERCORRELATIONS AMONG SUBJECT DIMENSIONS
__________________________________________________________________________________
                           FB OV QOL OV   PS   NS   GP    AN TD      ACT      PAR     DEP
FB OVERALL    1.00     -.42*       .29   -.07   .03    -.05   -.02      .01        .05    .11


QOL OVERALL -.42*     1.00    -.04 -.06   .07    -.05   -.11     -.21        -15 .24
___________________________________________________________________________________
*Correlation is significant at the 0.05 level (2-tailed).

LEGEND: FB OV- Family burden overall score, QOL OV-Quality of life overall score, PS-Positive symptoms, NS-Negative symptoms, GP-General psychopathology, AN-Anergia, TD-Thought disturbance, ACT-Activation, PAR-Paranoid symptoms, DEP-Depression.

The correlation values plotted in Table No. 8 show a significant negative correlation between the overall family burden and overall QOL scores. Though a cause-effect relationship cannot be interpreted on the basis of this, it indicates that increase in one domain adversely impacts the other and both seem to mutually influence one another. A recent study by Foldemo et al. (2005), have also found a correlation between lower overall quality of life and higher perceived burden in parents of schizophrenic patients. It is also important to note that the overall FB and QOL scores did not enter into a significant relationship with any of the dimensions of the PANSS. This is contrary to the finding of Hamada et al., (2003) who found that psychotic symptoms of schizophrenic patients were closely related to the mental state and QOL of their families. The lack of correlation seen in this study between psychiatric symptomatology of the patient and the FB and QOL scores of their caregivers perhaps indicates that both FB and QOL are complex variables not determined exclusively by the psychiatric status of the patient but by several other factors as suggested by previous authors (e.g. Saunders, 2003; Ivarsson et al., 2004). While no correlations were obtained in this study between the PANSS scores and the FB and QOL status of their caregivers, another study by (Karow , 2005), which also used the PANSS, found that anxiety and depression in schizophrenic patients correlated with their own QOL scores during and after hospitalization.

Implecations for Therapeutic Intervention
Caregiver burden and burnout are important, prevalent, and preventable. Physicians aware of the symptoms and signs can better assess, identify, prevent, and intervene in these situations. Such efforts result in improved quality of life for both patients and their loved ones (Kasuya et al., 2000). Early intervention could result in reduction in morbidity and better quality of life for the patients and their families. This study has revealed that an integrated therapeutic approach consisting of components such as pharmacotherapy, psychosocial therapies and spiritual therapy is successful in enhancing mental health status of patients with schizophrenia besides reduction of family burden and improved quality of life in their caregivers. A decade ago, Tarrier (1996), argued that a comprehensive and holistic approach to care in schizophrenia that combines, and continually refines, pharmacological and psychosocial interventions is required and that high-quality care and clinical management need to be provided by a partnership between pharmacological; and psychosocial interventions. He emphasized that psychosocial interventions can provide patients and their carers with skills that both increase the patient's resilience, and empower the patient and carer to forge a partnership with clinicians to define high-quality care. There is considerable evidence to emphasize the importance of combining drug therapy with outpatient psychotherapy, psychotherapeutic management, and psychosocial programs May (1976). Drug and psychosocial intervention is indicated as part of tertiary prevention to prevent further disability in the illness observe Lee et al. (2005).

Psychiatric rehabilitation for schizophrenia involves utilizing psychosocial interventions to assist persons with the illness to attain their highest level of independent functioning, strongest level of symptom control, and greatest level of subjective life satisfaction (Glynn, 2003). Psychotherapeutic intervention in schizophrenia should be goal-directed and aimed particularly at developing and promoting social and occupational skills and at eliciting cooperation with appropriate drug treatment and monitoring its progress May (1976). Pekkal & Merinder (2004), observe that psycho education approaches are useful as part of the treatment programme for people with schizophrenia and the fact that these interventions are brief and inexpensive should make them attractive. Further, psychosocial interventions decrease the frequency of relapse, encourage compliance with medication, improve general social impairment and the levels of expressed emotions within the family when compared to standard care (Pharoah et al., 2004). When relatives of patients with schizophrenia are able to improve their coping strategies, it is possible for burden to be reduced. This points to the necessity to provide families of chronic psychotic patients with psychoeducational interventions emphasizing the adoption of an effective coping style (Magliano et al., 2000).

Psychoeducation programs for caregivers need to focus on empathic engagement, education, ongoing support, better access to clinical resources, social network enhancement, and increased problem-solving, coping and communication skills. Thorup et al. (2005), in a recent study which adopted an integrated intervention modality conclude that the integrated approach is crucial, since, many aspects of the integrated treatment contributed to the reduction of both negative and psychotic symptoms in their sample. While a combination of pharmacotherapy and psychosocial procedures has been routinely used with schizophrenic patients and their caregivers, it is suggested on the basis of this study that they may stand to benefit by also including elements of spiritual therapy specific to their religious orientation during intervention.

Limitations of the Study
While this study establishes the efficacy of an integrated treatment modality, the data do not reveal the extent to which its components (pharmacotherapy, psychosocial intervention or spiritual aspects) individually have contributed to the changes seen in patients as well as their caregivers. The absence of a control group is yet another limitation against which the findings need to be viewed. Respondents of this study professed a faith in Hinduism and approached the Gunaseelam center owing to the ‘healing powers’ traditionally attributed to the diety there and as such those belonging to other religious faiths have gone un-represented.

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