INTRODUCTION:

An individual who has the responsibility of meeting the physical and psychological needs of the dependent patient is simply termed as his/her caregiver. Caregivers, while assisting or supervising activities of psychiatric patients, often get placed by major burden, thereby placing the former at a great risk of mental and physical health problems. The physical, emotional and financial toll of providing care can be termed as ‘caregiver burden’. With the progression of any illness, it carries with it a tremendous increase of burden on the person who does the caregiving. The burden faced by any caregiver of a patient with a psychiatric illness is a fundamental prognostic aspect as it critically determines the negative outcomes for caring.

Caregiving of persons with mental illness is challenging as sometimes it is demanding and at other times, it is fulfilling to caregivers. No one will work harder for the health and well-being than family.

Due to Indian tradition and paucity of mental health professionals, majority of persons with mental illnesses stay with their family members. Hence, family caregivers have a key role in the care of people with psychiatric disorders. Dr. Vidya Sagar in 1950s first involved the family in the care of mentally ill at Amritsar Mental Hospital. Most families are not prepared to cope with learning their loved ones have mental illness. It can be physically and emotionally trying, and can make us feel vulnerable to the opinions and judgments of others. There are more than 200 classified forms of mental illness.

The changing social milieu in India such as urbanization and nuclear family is placing significant burden on family members. Indians share a collective value orientation and regard their caregiving as a reflection of the cultural ethos of interdependency and reciprocity. Thus, not just the dearth of beds in mental hospital or community care services but also strong family ties and innate felt responsibility for loved ones ingrained in the Indian culture made family members the crucial spokes wheel of therapeutic purpose.

India has a rich heritage of diversity in several dimensions which sometimes makes it important to understand different needs and problems of different groups for effective policy changes.

Approximately there are about 450 million people across the globe who deal with a mental illness. Globally, caregivers play an important and ever-expanding role as developments in medical care find new ways to help control illness while health and social services systems are resource-challenged. There are physical, social, emotional, sexual and even financial impacts of caregiving. As caregivers struggle to balance work, family, and caregiving, their physical and emotional health is often ignored. Not only for the wellbeing of self but also for a healthy recovery of the patient is the emotional and physical health of caregivers important.

The world of psychiatry and psychology comprises of different disorders which affect not only adults but also children; they may develop at any point of time in life with or without any precipitating factor.

Depression–a common mental disorder, a person with depression presents depressed mood, loss of interest or pleasure, decreased energy, feelings of guilt or low self-worth, disturbed sleep or appetite, and poor concentration. Moreover, it often comes with symptoms of anxiety which can become chronic or recurrent and lead to substantial impairments in an individual’s ability to take care of his or her everyday responsibilities. At its worst, depression can lead to suicide. Depression loses almost 1 million lives yearly due to suicide, which translates to 3000 suicide deaths every day. According to WHO report, 2012, every person who completes a suicide, 20 or more may attempt to end his or her life. Disruptive mood dysregulation disorder, major depressive disorder (including major depressive episode), persistent depressive disorder (dysthymia), premenstrual dysphoric disorder, substance/medication-induced depressive disorder, depressive disorder due to another medical condition, other specified depressive disorder, and unspecified depressive disorder all fall under the category of depressive disorders.

Anxiety – anxiety has many faces. It may be viewed either as a symptom; or as a specific neurotic syndrome. As a symptom, it is found to a greater or lesser degree. Anxiety may be either acute, occurring in discrete attacks, or chronic, or a mixture of both, the attacks arising out of a background of longer-lasting, less intense symptoms. The manifestations of anxiety are both somatic and experiential. Types of anxiety disorder are: separation anxiety disorder; selective mutism; phobia; social anxiety disorder; panic disorder; agoraphobia; generalised anxiety disorder; substance/medication-induced anxiety disorder; other specified anxiety disorder; and unspecified anxiety disorder.

Intellectual disability– having its onset during the developmental period this disorder includes intellectual and adaptive functioning deficits in conceptual, social, and practical domains. The following criteria must be met: deficits in intellectual functions, deficits in adaptive functioning and onset of intellectual and adaptive deficits during the developmental period. Mild, moderate, severe and profound levels of severity are defined on the basis of adaptive functioning, and not the IQ scores of the individual, because it is adaptive functioning that determines the level of support required. In the lower end of the IQ range IQ measures are less valid. Intellectual disability is a varied condition with multiple causes. Along with social judgement difficulties, there may be associated complications like assessment of risk; self-management of behaviour, emotions, or interpersonal relationships; or motivation in school or work environments. Lack of communication skills may be a precipitator for disruptive and aggressive behaviors.

Schizophrenia - schizophrenia, other psychotic disorders, and schizotypal (personality) disorder are included in the schizophrenia spectrum and other psychotic disorders. Abnormalities in one or more of the following five domains define the spectrum: delusions, hallucinations, disorganized thinking (speech), grossly disorganized or abnormal motor behaviour (including catatonia), and negative symptoms. Key defining features of this disorder include: delusions, hallucinations, disorganised thinking (speech), grossly disorganized or abnormal motor behaviour (including catatonia), and negative symptoms. The typical indications of schizophrenia involve a series of cognitive, behavioural, and emotional dysfunctions, but no single symptom is pathognomonic of the disorder. The diagnosis involves the recognition of a group of signs and symptoms associated with impaired occupational or social functioning. Individuals with schizophrenia will vary substantially on most features, as it is a heterogeneous clinical syndrome.

While living with and caring for an individual with a psychiatric or other mental illness seems inherently stressful, relatives of patients report a wide range of reactions to their situation. Under perplexities the caregivers raise queries – What to do? How to do? Whom to approach? How much time will be required? Will medication be needed? Will the patient ever recover? etc. The researchers during their clinical practice in mental healthcare settings have encountered many family members troubled with various problems because of having their family member with a mental illness.

The demands of caring for a person with a chronic mental illness has both emotional and practical impact on the caregiver. Research into the impact of caregiving shows that one-third to one-half of caregivers suffer significant psychological distress or depression and experience higher rates of anxiety than the general population. Being a caregiver can raise difficult personal issues about duty, responsibility, adequacy and guilt. Caring for a relative with a mental health problem is not a static process since the needs of the care recipient alter as their condition changes. The role of the carer can be more demanding and difficult if the care recipient’s mental disorder is associated with psychiatric or any other mental illness.

A Study by Mills in the year 2007 assessed and selected 200 psychiatry patients and found that particularly all were a source of anxiety to their relatives. More than 50% were described as difficult at home and only 12 % caused no practical difficulties. Those patients who did not speak often created more distress than those whose speech was excessive though the later caused suffering too.

Carers play a vital role in the lives of such patients, so the time is not the only thing demanded of them. They endure significantly considerable amount of psychological distress as compared to the general mass. With such complexities the caregiver drains himself on resources from all ends. As a family is now being recognized as an important factor for both in the genesis and prognosis of mental illness, hence the study is aimed at studying how at a certain age the quality of life of a caregiver is affected while caring for a person with any sort of mental illness.

Over the past few decades, research into the impact of care-giving has led to an improved understanding of this subject including the interventions that help. It has now been realized that developing constructive working relationships with care giver, and considering their needs, is an essential part of service provision for people with mental disorders who require and receive care from their relatives. Paying attention to mental health status of family members and caregivers of the patients with mental disorders is really of importance regarding its pivotal role on controlling and prevention of the disease and its recurrence. In addition, it may have a role on the public mental health status and prevention of mental disorders in patient's family members.

One of the objectives of National Mental Health Program being ‘community participation’starts with the involvement of families. Involvement and sense of responsibility needs to be improved by creating awareness about the significant role played by the family members in the management of the mental illness. As families represent the key resource persons in the care of such patients in India, their role as primary caretakers is assigned for two reasons. First, there is paucity of trained professionals to execute psychosocial interventions and second, most Indian families would like to be meaningfully involved in all aspects of care of their ill relative. Family role is core in treating mentally ill in India. Recent trends point towards a community-based care for persons with severe psychiatric disorders where family members would assist with the care of these patients. Family members help their loved one to take proper treatment; they help the patient in setting sensible goals. When a patient is under pressure or is criticized he/she generally does not do well; by telling them that they are doing right is the best way to help a loved one move forward.

Exploring the impact of having a family member with a psychiatric or mental illness and the problems faced by the families would be beneficial towards planning holistic healthcare services. The community based services which can provide support to the family members can better be incorporated along with the usual care.

Henceforth, for the present study, 228 caregivers were interviewed from the state of Gujarat using the Behaviour and Symptom Identification Scale-32. The caregivers ranged between ages of 21 years to 60 years. The caregivers involved themselves in caring for patients with depression, schizophrenia, intellectual disability, anxiety etc.

Method:

Sample:

The present research was undertaken with the aim of studying the effects of age on the quality of life of caregivers of patients with psychiatric and mental illness. The sample size of the study was 228, with 142 females and 86 males. The caregivers (of patients diagnosed by mental health professionals) were interviewed in a structured format by the researcher using Behavior and Symptom Identification Scale-32. The interview took place in various settings like psychiatric clinic, mental health institute, child neuro-care centre, mental hospital, psychological setup etc. mainly in the cities of Ahmedabad and Bhuj, Gujarat. Caregivers from different sectors of societies, volunteered to participate in the research.

The caregivers were divided into four groups based on their age – 21-30 years, 31-40 years, 41-50 years and 51-60 years of age.

Instrument:

Behavior and Symptom Identification Scale-32 was originally developed by Eisen and colleagues at McLean Hospital in the United States. This scale was originally developed to assess outcomes among inpatients with mental health problems. Subsequent studies have confirmed its utility as an outcome measure for use across a range of mental health settings. This scale had 32 items; each item rated from 0 (no difficulty) to 4 (extreme difficulty), resulting in 32 individual scores, five subscales and a single total score.

Numerous studies have examined the internal consistency of the BASIS-32, as measured by Cronbach’s alpha. In these studies, Cronbach’s alpha of subscales has ranged from 0.6 to 0.9, indicating that the BASIS-32 has a high level of internal consistency across settings (inpatients and outpatients) and types of administration (structured-interview and self-administration). In these studies, the impulsive and addictive behaviour subscale and the psychosis subscale have consistently achieved the lowest Cronbach’s alpha (i.e., the poorest internal consistency). Several studies have also analysed the intercorrelations between the subscales. These studies have shown that three of the five subscales (relation to self and others; depression and anxiety; and daily living and role functioning) are highly intercorrelated, indicating this instrument may be measuring a single dimension rather than distinct aspects of psychological functioning.

Test-retest reliability - only a few studies have examined the test-retest reliability of the BASIS-32, but their findings are uniformly positive, suggesting that the instrument produced consistent results when rated by the same rater at different points in time.

RESULTS:

H0: There is no significant difference between the variances of life challenges over different age groups.

Ha: There is significant difference between the variances of life challenges over different age groups.

Descriptives
Challenges
	N	Mean	Std. Deviation	Std. Error	95% Confidence Interval for Mean		Minimum	Maximum
	N	Mean	Std. Deviation	Std. Error	Lower Bound	Upper Bound	Minimum	Maximum
21-30	117	1.25	.870	.080	1.09	1.41	0	3
31-40	52	.77	.854	.118	.53	1.01	0	3
41-50	31	1.35	.709	.127	1.09	1.62	0	3
51-60	28	1.43	1.451	.274	.87	1.99	0	4
Total	228	1.18	.959	.064	1.05	1.30	0	4

Test of Homogeneity of Variances:

H0: There is homogeneity of variances

Ha: There is no homogeneity of variances

Test of Homogeneity of Variances
Challenges
Levene Statistic	df1	df2	Sig.
11.881	3	224	.000

Interpretation:

Here the significance value is .000. The p value is less than or equal to the level of significance. Hence, the null hypothesis is rejected and so there is no homogeneity between the variances with respect to the age groups.

From the data above it becomes clear there is no similarity between the changes that take place for the caregivers with respect to the age groups. The highest number of caregivers, 117, fall in the age group of 21-30 years, followed by 31-40 years having 52 caregivers, 41-50 years` having 31 caregivers and last 28 caregivers in the 51-60 years of age group.

ANOVA
Challenges
	Sum of Squares	df	Mean Square	F	Sig.
Between Groups	11.986	3	3.995	4.543	.004
Within Groups	196.997	224	.879
Total	208.982	227

Interpretation:

Here the significance value is .004. The p value is less than the level of significance. Hence, the null hypothesis is rejected. This says there is significant variance between the life challenges over age groups.

This explicitly explains that with increasing age, the difficulties faced by a caregiver while caring for its patient also increase. The longer the duration of the illness the more problems the caregiver goes through. The challenges faced could be in terms of their sexual life, social life, managing finance, taking care of their daily chores etc.

Graph:

Graphical Interpretation:

The above graph shows that the highest mean value belongs to the fourth group which is of people belonging to 51-60 age which interprets that they face maximum challenges in their quality of life as opposite to the second group of people belonging to 31-40 age group having the lowest mean.

Thus, people belonging to the age group of 51-60 undergo maximum difficulties as opposed to people belonging to the other groups.

DISCUSSION:

Studies have reported that caregivers stated burden in different areas including effects on family functioning, social isolation, financial problems, and health. 18-47% of caregivers land in depression, as reported by many notable community based studies. It is also known that caring for someone with psychiatric illness is associated with a higher level of stress than caring for someone with functional impairment from other chronic medical illnesses. Many authors are of the opinion that the level of burden does not correlate with the duration of illness, but has enough variability with age, gender and educational status.

Evidence suggests that family members experience significant stress in coping with a psychiatrically ill person. Feelings of loss and grief is experienced by the relatives of the patients. They are confronted with uncertainty and emotions of shame, guilt and anger. Like the patient, they feel stigmatized and socially isolated. Their lives may be disrupted by providing more care than would be normal for someone of patient’s age. In cases where the reciprocity between family members is out of balance, normal care changes to caregiving. It may become both psychologically and economically stressful to carry out the role of caregiving along with the already existing family role.

Caregivers are at risk for many different physical and mental health challenges. In general, they suffer from high levels of stress and frustration, show higher levels of depression than the general population, sometimes exhibit harmful behaviors, from increased use of alcohol or other substances to higher than normal levels of hostility. Caregivers are also physically less healthy than non-caregivers, and have more chronic illnesses like high blood pressure, heart disease, diabetes and arthritis than their non-caregiving peers. They may suffer from poorer immune function resulting due to exhaustion. They neglect their own care (have lower levels of self-care and preventive health behaviors than others), and have higher mortality rates than non-caregivers of the same age. Given these odds, caregivers need to take better care of themselves and reduce their levels of stress, depression, and anxiety.

Early empirical research and clinical observation showed that assuming a caregiving role can be stressful and burdensome. Caregiving creates physical and psychological strain over long period of time, accompanied by high levels of unpredictability and uncontrollability; it also has the ability to create secondary stress in numerous life domains such as work and family relationships, and frequently requires high levels of vigilance. Caregiving can be used as a model for studying the health effects of chronic stress as it fits the formula for chronic stress very well.

SUMMARY:

Caregiving is a complex health care activity. From an informal family level activity, it is becoming a major part of health care. There is a growing awareness of the mental health aspects of caregiving both in the economically rich and low- and middle-income countries. It is this aspect of addressing the emotional dimensions of caregiving, in addition to importance to care receivers and to utilize the caregiving situations to address the prevention of mental disorders, promotion of mental health, and fight stigma of mental disorders.

The World Federation of Mental Health acknowledges that caring for those with a chronic condition requires tireless effort, energy, and empathy and indisputably greatly impacts the daily lives of caregivers. Often, family caregivers receive little recognition for the valuable work that they do, and policies in most countries do not provide financial support for the care services they provide. Caregivers often ignore their own physical and emotional health while struggling to balance work, family, and caregiving. In combination with the lack of personal, financial and emotional resources, many caregivers often experience tremendous stress, depression, and/or anxiety in the year after caregiving begins (World Federation of Mental Health, 2010).

The present research was conducted in order to study the effects of age on the quality of life of caregiver of patients with mental illness. For this the researcher interviewed a sample of 228 comprising of 142 females and 86 males using Behavior and Symptom Identification Scale-32 at different settings. The caregivers were divided in to four groups based on their age - 21-30 years, 31-40 years, 41-50 years and 51-60 years of age.

From the analysis of the data it can be inferred that there is no homogeneity between the variances with respect to the age groups. Also there is a significant variance of .004 between the life challenges over different age groups. People belonging to 51-60 years of age face maximum challenges as opposite to people belonging to 31-40 years of age.

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Received on 10.04.2019 Modified on 30.04.2019

Res. J. Humanities and Social Sciences. 2019; 10(2):629-634.

DOI: 10.5958/2321-5828.2019.00102.5