A Study to Assess the Level of Family Burden Among the Caregivers of Schizophrenic Patients at a Mental Health Center in Salem

Introduction

Caregiver burden has been defined as the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member (Stucki & Mulvey, 2000). It is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the care-giving experience. The burden can be objective or subjective. Objective burden is defined as readily verifiable behavioral phenomena. Example: Negative patient symptoms; caregiver’s life disrupted in terms of domestic routine, social activities, and leisure; social isolation; problems related to finance and employment; effects on the health of the entire family; and the unusual behavior of the patient. Subjective burden comprises emotional stressors such as fear, sadness, anger, guilt, loss, stigma, rejection, etc., on the caregiver.

The shift towards community care for patients with mental disease has resulted in the transfer of responsibility of their day-to-day care to their family members, which has led to profound psychosocial, physical, and financial burden on the patients’ families.

Schizophrenia is found in all societies and geographical areas and is a major cause of death in patients. About 15% of new admissions in mental hospitals are schizophrenia cases, and it has been estimated that they occupy 50% of the hospital beds. About 3-4% per 1000 people in every community suffer from schizophrenia.

About of the general population carries the risk of developing this disease in their lifetime. India ranks among the highest in the prevalence rate of schizophrenia. Amongst the epidemiological studies in India, the study of functional psychosis in urban community (SOFPU) in Madras is the most confounding one. It was a multistage census survey wherein the prevalence rate of schizophrenia was estimated to be at 2.62/1000 people.

The World Federation of Mental Health estimates that 80% of the caregivers in the world are female. They could be the spouse, mother, or daughter of the patient. Studies have shown that women, who have to care for a mentally ill patient, are prone to have six times more depressive and anxiety symptoms than those who have no such liability. It has been reported that factors influencing the caregiver burden include the gender and age of the patient, severity of the disease, cultural factors, stigma, duration of the disease, and disability. Studies exploring the relationship between the economic condition and caregiver burden have shown that a lower socioeconomic level is associated with increased caregiver burden. The World Federation of Mental Health has assessed the burden of those providing care to patients with chronic diseases as a global problem and has announced that caring for these patients requires continuous energy, knowledge, empathy, and economic power, and that it influences the daily living of the caregivers to a large extent. While attempting to establish a balance between their jobs, families, and patient care, caregivers usually neglect their own physical and mental health.

The negative impacts of persons with a serious mental illness on their family members have been explored since the 1950s, and the term “caregiver burden” began to be used in the 1970s. It is a widely accepted concept and includes all of the physical, mental, social, and economic problems experienced by the relatives of an individual with a chronic mental illness. Some studies have demonstrated that caregivers usually do not have the knowledge and competency necessary for providing the appropriate care to such patients.

The burden on the family caregivers results in negative consequences not only for themselves but also for the patients, other family members, and the health care system as a whole. It affects their physical, emotional, and economic status.

The caregivers of schizophrenia patients experience tremendous stress and are potentially at an increased risk of developing mental disorders. Jensiya et al conducted a cross-sectional hospital-based study to assess the family burden on 56 caregivers of patients with schizophrenia at Mercy Psychiatry Hospital, Trichy. The tools used in this study were the sociodemographic data and the responses to the interview schedule developed by Pai and Kapur³ . The findings of this study indicated that these caregivers experienced an enormous burden and required proper attention and psychological intervention to reduce this burden and improve their quality of life.

The objective of the present study was to study the association between the demographic variables and the level of family burden among the caregivers of schizophrenic patients.

Materials And Method

A nonexperimental, descriptive approach was adopted to assess the level of family burden among the caregivers of schizophrenic patients at the Manoraksha Mental Health Center in Salem. The demographic characteristics of the caregivers, such as age, gender, relationship, marital status, religion, education, occupation, income, area of residence, and health issues, as well as their level of burden of caregiving were analyzed in this study. It included 30 caregivers of schizophrenic patients, selected through purposive sampling technique based on the inclusion and exclusion criteria.

The inclusion criteria comprised caregivers who were: in the age range of 20 to 60 years;taking care of a family member diagnosed with schizophrenia according to diagnostic and statistical manual of mental disorders (DSM-IV-TR), for more than a year; and whose patients were under medication and had regular follow-up. Caregivers who had: patients with co-morbid conditions; not been living with the patient for at least 6 to 10 months; history of medical or psychiatric illness before becoming a caregiver; and were not willing to participate in the study, were excluded.

The study consisted of two sections:

Section A: Demographic variables of the caregiver – age, gender, relationship with the patient, marital status, religion, area or residence (rural/urban), education, occupation, income, and any past health issues.

Section B: Assessment of the level of burden among the caregivers using the standardized questionnaire and the scores obtained from the “Burden Assessment Scale”.

Data collection procedure

The permission to collect data was obtained from the chief psychiatrist of Manoraksha Mental Health Center, Gajjalnaickenpatti, Salem, before study initiation. Informed consent was obtained from the study participants. The data was collected by the researcher for 2 weeks. All the caregivers were asked to visit the center. Individual pre-tests were done by asking them to provide answers to a standardized questionnaire, and their responses were scored according to the “Burden Assessment Scale,” used to assess the level of burden on families of mentally ill patients. The levels of burden based on the scores were categorized as follows: 0-20 (low), 21-40 (moderate), and 41-60 (high).

Results

Based on the caregivers’ demographic information, it was noted that: 14 (47%) of them were in the age group of 20-30 years; majority of them were female: 21 (70%); about half of them were married: 22 (73.3%); most of the caregivers were the spouses of the patients: 10 (33.3%); one-third of them were Hindu: 18 (60%); half of them resided in rural areas: 16 (53%); many of them had completed higher secondary education: 12 (40%) and were employed: 11 (37%); 73 (43%) of them had an income in the INR 5,000-10,000 per month range; and 19 (63%) of them had no health issues.

It was observed that 8 (26.6%) of the respondents had low, 15 (50%) had moderate, and 7 (23.3%) had high level of family burden, respectively. There was no significant association between the caregivers’ level of family burden and their demographic variables such as age, gender, relationship with the patient, marital status, religion, residential area, education, and health issues; however, it was highly significant for joint family setting, occupation, and the income of the caregiver.

Limitations of the study

The study was limited for the following reasons:

• It was restricted to caregivers of schizophrenic patients
• The sample size was limited to 30 caregivers
• The data was collected only from first-degree relatives of schizophrenic patients.

Conclusion

The majority of caregivers of schizophrenic patients had moderate level of family burden. Certain social traits such as living in joint families can increase the risk of caregiver burden. There is a need for providing psychological assistance to the vulnerable caregivers to help reduce their burden and employ positive coping strategies, as well as strengthening and increasing the economic support for families affected due to schizophrenia.

Conflict of Interest

None.