99 ORIGINAL ARTICLE Quality of life and perception of burden among caregivers of persons with mental illness Sucharita Narasipuram*, Sivaprasad Kasimahanti** *Psychologist, Roshini Counselling centre, **Associate Professor of Psychiatry, Institute of Mental Health, Osmania Medical College, Hyderabad, India. ABSTRACT Background: Family care-giving for persons with mental illness has been associated with reduced quality of life and high levels of burden. Most studies on care-giving focused on burden of caregivers in schizophrenia and to some extent on bipolar affective disorders. Aim: The current study examined perceived burden and its influence on the Quality of Life in caregivers of persons suffering from severe and persistent psychiatric illness. Methods: Care givers of persons suffering from mental illness of three groups viz., Schizophrenia (35subjects), Affective Disorder (36subjects), and Mental Retardation (32subjects) attending the outpatient department of a psychiatry hospital were assessed on Zarit Burden interview and World health organization Quality of Life -Bref (WHOQOL-Bref). Care receiver's functional ability was associated with care giver's perception of burden. Results: Care givers of Schizophrenia group reported higher burden than care givers of Affective Disorder followed by Mental Retardation. Overall, care givers reported high burden and significantly reduced Quality of Life in the domains of physical health, social relationships and environment. In particular, Schizophrenia group of caregivers reported higher levels of burden and reduced quality of life in psychological and environmental domains Conclusions: The findings from this study suggest that caregivers need social support and family intervention programmes to cope with the burden of care-giving and enhance better quality of life. Keywords: Caregivers, Perceived burden, Quality of Life, Schizophrenia, Affective Disorder, Mental Retardation INTRODUCTION The consequences of care-giving for mentally ill persons have been associated with burden reflected in physical and psychological ill health. [1-5] There are nearly 450 million people in the world who are diagnosed as having had a psychiatric illness in their life time. [6] Among these disorders, schizophrenia and affective disorders comprise 55% of hospital admissions and 65% of inpatient care. The World Health Organization (2003) statistics also indicate that more than 25 percent of population is affected by some sort of psychiatric disorders world-wide. This also implies that globally one family in every four is involved in care-giving for psychiatric illness. Families of mentally ill relatives have reported psychiatric distress, depression (mediated by stigma and patient's suicidality), anxiety and psychotic symptoms as a result of care-giving responsibilities. [7,8] Care-giving also exacts Address for correspondence Ms Sucharita Narsipuram, Psychologist, Roshini Counselling Centre, Hyderabad. Andhra Pradesh, India. Email: drsivaprasadk@gmail.com How to cite this article : Narasipuram S, Kasimahanti S. Quality of life and perception of burden among caregivers of persons with mental illness. AP J Psychol Med 2012; 13(2) : 99-103. a heavy toll on the relationship with family and friends, their social life and also leisure activities. [9] Couples of bipolar disorders expressed marital, parenting and interpersonal problems, [10] impairment in family functioning and lack of cooperation. [11] Caregiver's experiences with professionals in the mental health system are often 'frustrating and double-binding. [12] Caregivers are not only subjected to physical and verbal abuse, [13-15] resulting in visits to physicians and health facilities, [16, 17] but their general physical health is also affected, making them vulnerable to illnesses. [18] Deinstitutionalization in the western world has led to families taking care of their mentally ill relatives, for which they were unprepared and untrained resulting in a sense of 'burden' among them. Unlike the western countries, in India deinstitutionalization was not the harbinger for family care-giving, but economic and kinship obligation compensating the modest mental health infrastructure led to the involvement of caregivers in India. Care givers in India, therefore, face significantly higher burden in taking care of the mentally ill persons in the community due to inadequate funding for mental health services by the government, lack of adequate number of trained mental health personnel and the absence of social security services from the state.
100 Narasipuram and Kasimahanti : Quality of life and burden in caregivers The impact of mental illness on the overall quality of life has been hardly explored. While there are studies to show the stress and burden experienced by the families, questions remain as to how family's global quality of life gets affected when challenged by care-giving responsibilities to a mentally ill relative. [19] The adverse consequences of care-giving impact not only the caregiving process but also reduce the quality of life of the caregiver. [20] Few studies have reported the association between caregiver burden and reduction in quality of life. [21-23] The present study intends to examine how quality of life of the caregiver is influenced by the process of care-giving (or perception of burden) across three groups of psychiatric disorders. MATERIALS AND METHOD Subjects A consecutive sample of one hundred and three care givers of patients suffering from severe and persistent mental illness viz., Schizophrenia, Affective Disorder, and Mental Retardation who attended out-patient service at Government Hospital for mental Care have been recruited into the study. The study group consisted of care givers of 36 patients suffering from Schizophrenia, 35 patients suffering from Affective Disorder and 32 patients with mild or moderate Mental Retardation. The patients with Schizophrenia, Affective disorders and Mental retardation were in remission and were not currently symptomatic. The inclusion criteria required patients who were stable and were on regular follow-up with maintenance medication for at least 6 months. Affective disorders with minor depression and Dysthymia were not included and only those with recurrent depressive disorder and bipolar affective disorder were included. An informed consent was taken from the patients and their caregivers before including them into the study. The diagnosis was ascertained using ICD 10 DCR criteria. Assessment Demographic data of the care receiver or the patient included age, sex, marital status, education, and employment and their functional level that was assessed using The California caregiver resource centre's uniform assessment (Atool) section IV [24] California caregiver resource centre's uniform assessment (A tool) section IV describes activities of daily living (such as eating, bathing, using toilet, preparing meals, taking medicines, managing money, performing house hold chores) that the patients had difficulty in performing. Since the activities were simple to understand an official Telugu version was not adapted. Socio-demographic Profile of the care giver: A semistructured socio-demographic profile of caregivers, their relation to the patient /care receivers, age, sex, education, background, marital status, relationship, diagnosis, duration of mental illness, and duration of care giving. Adapted Zarit Interview (AZI) for the assessment of burden. [25] Adapted Zarit Interview (AZI) for the assessment of burden had items (such as, Not enough time for self, Stressed between caring and other responsibilities, Social life has suffered because of caring Uncertain what to do about CR, Should be doing more for CR, Could do a better job in caring for CR) which were simple to understand, hence an official Telugu version was not adapted WHOQOL-BREF - 26 item abbreviated tool developed by the World Health Organization Quality Of Life, Group 1998. [26]The WHOQOL instrument was adapted and translated into Telugu (local language of Andhra Pradesh) for epidemiological study of eye diseases in Southern India, Andhra Pradesh. [27] The instrument was found to have high inter-rater reliability. Corresponding items to WHOQOL-Bref, were verified by two monolingual and two bilingual experts from this adapted version and was used in this study. Data Analysis Data was collected over a period of four months (August 2007-November 2007). This data was anonymised, coded, tabulated and analyses using SPSS 13 package. Data analysis included statistical test such as ANOVA, t tests, chi square and pearson's product and measures of central tendency (mean and SD) wherever appropriate. RESULTS AND DISCUSSION Socio-demographic profile of caregivers and care receivers Profiles of caregivers among the three sub groups of psychiatric disorders indicated that among the Mental retardation group there were mostly married unemployed mothers in their middle years from urban areas with either no formal education or less than high school education, living in nuclear families that provided care for more than 10 years. Spouses as well as parents mainly from rural areas with less than high school education and differing in employment status living in nuclear families represented the caregivers of affective disorders. Mostly married men and women in middle age above 36 years residing in rural areas, having low literacy rates and employed full-time in manual labour, characterized the caregivers of schizophrenia. Profiles of care receivers among the three sub groups of psychiatric disorders indicated that there was equal number of male and female patients with mental retardation with low academic as well as employment
Narasipuram and Kasimahanti : Quality of life and burden in caregivers 101 status. There was greater proportion of female patients with affective disorders and who had high school education with no employment. There were slightly more women than men who were affected with schizophrenia with nearly half of them remaining unmarried. Perception of burden by caregivers The caregivers of schizophrenia reported a greater perception of burden than the other two. On the individual socio-demographic characteristics of the care receivers however there were no significant variables that influenced the perception of burden. Similarly there were no statistically significant differences on caregivers characteristics and perception of burden, except for variations among those living in rural areas who, experienced more burden than their urban counterparts. Similar results were reflected in a study by Moily, etal, [28] that caregivers from rural areas perceive greater burden than those from urban areas. Findings on perception of burden were further examined across the three groups of psychiatric disorders (Table 1). Statistically significant difference was observed among the three groups of caregivers. Table 1 Care giver burden across three groups of psychiatric disorders Disorder N Mean SD ANOVA Mental retardation 32.68.47 3.040* Affective Disorders 36.72.45 Schizophrenia 35.91.28 Total 103.77.41 *p < 0.05 As seen from the above table caregivers of schizophrenia reported higher burden than care givers of affective disorder followed by those with mental retardation. This finding is similar to the previous cross-sectional studies that care-giving for persons with schizophrenia impose a heavy burden for their families. [29] Relationship between care giver's burden and the functional ability of care receiver The difference in perception of burden among caregivers of these three groups can be attributed to the functional ability of the care receiver. In this sample, caregivers perceived greater burden when care receiver had functional impairments in instrumental activities of daily living. Some of the major areas of functional ability such as preparing meals, taking medicines, managing money, performing house hold chores, being supervised and the potential to wander were associated with higher burden. This is similar to the earlier reported studies that functional impairments in care receivers are predictive of caregiver burden. [30, 31] The functional impairment of schizophrenia patients with the potential to wander and being supervised there seems to be a greater burden perceived by their caregivers than in the other two groups of caregivers. Influence of burden on Quality of Life Care givers with high burden reported significantly reduced quality of life (Table 2). The domains of physical health, social relationships and environment were affected. Table 2 Levels of Burden across the dimensions of Quality of Life Dimensions of Quality of life Levels of burden N Mean F Physical health Less 23 102.08 10.02* High 80 90.35 Psychological health Less 23 74.43 3.085 High 80 71.00 Social relationships Less 23 40.00 6.213* High 80 35.20 Environment Less 23 104.17 15.69** High 80 91.05 *p < 0.05; **p < 0.01 In the physical health domain in WHOQOL-Bref the caregivers expressed that were not able to get around. In the social relationships domain caregivers reported that they did not have satisfying personal relationships and support from friends. In the environment domain caregivers expressed a need for healthy physical environment, enough money to meet needs, as well as for information and time for leisure activities and good conditions of living place. Quality of Life among the three groups The study also proposed to assess the variations in quality of living among the three sub categories of mental illnesses (Table 3). There were significant differences in the psychological health and environmental domain of quality of life of caregivers between schizophrenia and the other two. Table 3 Quality of life across three psychiatric disorders Dimensions on Type of disorder N Mean SD f Quality of life Physical health Mental Retardation 32 91.62 17.13 Bipolar affective disorder 36 97.33 16.56 2.132 Schizophrenia 35 89.71 14.78 Psychological health Mental Retardation 32 75.00 9.79 3.050* Bipolar affective disorder 36 71.66 10.79 Schizophrenia 35 68.91 9.55 Social relationships Mental Retardation 32 37.37 10.49 1.845 Bipolar affective disorder 36 37.88 10.62 Schizophrenia 35 33.60 9.41
102 Narasipuram and Kasimahanti : Quality of life and burden in caregivers Environmental Mental Retardation 32 99.87 15.62 6.936* Bipolar affective disorder 36 95.33 12.37 Schizophrenia 35 87.20 14.51 * p < 0.05 In the psychological health domain, ability to concentrate was reported to be most affected among care givers of schizophrenia. Healthy physical environment, money to meet needs, information available, satisfied with living conditions were some of the areas that were reported to reduce the psychological quality of life for the caregivers of schizophrenia in our study. Zauszniewski's, [32] middle-range theory of resourcefulness and quality of life conceptualized that contextual variables and process regulators intervene and influence quality of life. In adherence to this theory the present study showed that contextual variables, chiefly the functional impairments in care receiver had direct effect on process regulators (perceived burden) that had an impact on quality of life (physical health, psychological wellbeing, social relationships and environment). Caregivers in general perceived greater burden when care receiver had functional impairments in instrumental activities of daily living such as preparation of meal, taking medication, managing money, performing house hold chores, being supervised, and the potential to wander. Caregivers with high burden reported significantly reduced quality of life. In the quality of life, the domains of physical health, social relationships, and environment were significantly affected. The study also found that there were significant differences with greater reduction of quality life in the psychological health and environmental domains in caregivers of Schizophrenia group compared with the other two groups. The findings from this study also suggest that caregivers need social support and family intervention programmes to cope with the burden of caregiving and enhance their quality of life. Limitations There are some limitations to this study. This is a hospital based sample with subjects who have been treated with medication with a regular follow up. It is not a community based sample where majority of the patients live in rural area with limited resources of mental health services. Hence the results cannot be generalised to the community. Personal and social resources for coping and style of coping (problem-focused or emotion focus were not included in this study), which can influence burden and Quality of Life were not assessed in the study. It would be interesting to know how families coped and if the coping was adaptive and also whether coping had any impact on perceived burden. Assessment of expressed emotions (EE) would have added additional insights in to caregiver's experiences and the association between EE and burden would have added to the value of the study. This study also emphasises the need for implementation of the following strategies to reduce burden and improve quality of life among the caregivers. Family intervention strategies should be started, preferably, from the time of commencement of pharmacological treatment. They must provide adequate information regarding the nature of illness, need for long term treatment, identify early warning signs of relapse, empathise caregiver's distress, and help to reduce their expectations Psycho-social Rehabilitation to care receivers in the community to achieve the necessary skills for daily living must be included in the management plan. 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