INTRODUCTION:

Mental disorders are considered as invisible disorders as they are overlooked by patients, caregivers, health professionals, and policymakers yet cause significant health burdens¹. Family can help their loved ones get treatment and take their medication once they reached home. Family can also help patients by setting sensible goals³⁴. A recent WHO meta-analysis estimated that the prevalence of mental disorders was 22.1% in emergency settings³. Mental illness has several effects on the person, their family, and their community³⁵. Among Indian population, the estimated prevalence of mental disorders is found to be 5.8%⁴.

Recent studies have pointed that an increasing number of people experience mental health disorders. Due to a global deinstitutionalization of the treatment of mental illnesses, only a low proportion of those suffering from mental illnesses are admitted to hospitals. The rest of the persons affected need to be managed by their own family².

Families are the mainstay of caregiving for persons with mental illnesses. Most of the mentally ill patients are cared at home by their family. Family members have various responsibilities in caring for a person who has a mental illness—for example, monitoring their psychological and physical problems, transporting them to a hospital or clinic, providing emotional support, financial aid etc. They also play an essential role in the patient’s treatment adherence. Furthermore, family members have to tolerate behavioural changes in people with schizophrenia, such as hostility. So, the burden of caring for mentally ill patients falls on the family who provide all necessary support for the patient. Caregiving is a time-consuming responsibility^5,6,7.

At times, the society looks down upon the family members with a mentally ill patient as abnormal and a person having problems with behaviour. The family has always been recognized as an important factor both in the genesis and prognosis of mental illness³⁷. Thus, the whole family gets labelled, stigmatized, ostracized and discriminated in the society. The discrimination and stigma surrounding mental illness are widespread⁹. In our society the persons with psychiatric illness often received as unwanted elements and societal stigma prevents them from seeking help and treatment³⁶.

Thus, this review is undertaken to get in depth insight into the extent of stigma, barriers and its consequences on the family caregivers.

Concept of Stigma and Discrimination:

The term stigma is derived from Greek word “steizen” which means tattooing or branding. Stigma was initially described by Erving Goffman in 1963. He defined stigma as any characteristic or attribute by which a person was devalued, tainted, or considered shameful or discredited. Stigma is strongly influenced by cultural and contextual value systems that differ over time and across contexts^10,11.

The word discriminate is derived from the Latin verb ‘discriminare’ meaning "to distinguish or differentiate". Discrimination is defined as the differential treatment of an individual based on a socially ascribed characteristic¹².

Several diseases have stigma and discrimination attached to it, but mental illness is a disorder which has suffered a setback not merely to the patient, but family and the future prospects of the society at large. Among the various mental illnesses, evidence suggests that patients with schizophrenia experience more stigma compared to other psychiatric disorders like depression and eating disorders¹³.

Prevalence of stigma and discrimination among Family Care Giver’s:

Despite the existing programs for the control of non-communicable disease, including mental illness, mental health disorders remain as one of the hidden disease burdens in India due to stigma and discrimination^14,15. People with mental illness are subjected to high levels of stigma and discrimination because of widely held misconceptions about the causes and nature of mental health situations¹⁶. Studies have identified that stigma experienced by caregivers of mental illness varies from 43% to 83%^6,7. Living with and caring for an individual with a psychiatric disorder seems inherently stressful. Relatives of psychiatric patients report a wide range of reactions to their situation. On the whole, these family members endorse significantly higher level of psychological distress than the general population³⁹.

The global magnitude of perceived stigma among people with schizophrenia from 16 countries was found to be 13.5% and 22.1% for developing countries and 11.7% in developed ones, respectively¹⁷.

A study with a focus group in Hong Kong suggested that approximately 40% of patients with schizophrenia reported that their family members were unfairly treated because of the patients’ illness, and over 60% of their family members and partners chose to conceal their relationship.

Research on stigma indicated that 56% of relatives of patients with schizophrenia kept the disease secret in China^18,19. A Community-based, cross-sectional study undertaken in Udupi district, Karnataka among 445 community people, found the overall prevalence of stigma toward mental illness was 74.61%²⁰.

Forms of stigma:

Stigma and discrimination can occur in one or the other form. The co-occurrence of five components of stigma includes labelling, stereotyping, separation, status loss, and discrimination”⁶.

Labels are attached to people with mental illness which not only can stigmatize family members but also kill them silently. Due to labelling and stigmatization, families hide or are ashamed of people with mental disorders and feel embarrassed to take that person to treatment, family occasions and confine them to the home. This worsens the situation of people with mental illness²¹.

Most often negative stereotypes are attached to mental illness. Stereotypes can lead to inaccurate assessments of people’s personal characteristics. Stereotyping may be the basis for discriminatory acts by individuals.

Types of stigma:

Literature identifies different types of mental health-related stigma, including self-stigma, public stigma, professional stigma, and institutional stigma.

1. Self-stigma or internalized stigma refers to negative attitudes of a person to his/her own illness. Self-stigma is related to poor outcomes such as failure to access treatment, disempowerment, reduced self-efficacy, and decreased quality of life.

2. Public stigma refers to negative attitudes towards mental illness held by the general public. These often occur due to misconceptions, fear, and prejudice. Research has demonstrated the significant impact of public stigma such as discrimination in workplaces and public agencies.

3. Professional stigma occurs when professionals themselves experience stigma from the public or other healthcare professionals because of their work and connection with stigmatized individuals. Professional stigma is of particular concern as it may affect the care and treatment a person with mental illness.

4. Institutional stigma refers to an organization’s policies or culture of negative attitudes and beliefs toward stigmatized individuals, such as those with mental health problems. Such stigma can also be informed by legal frameworks, public policy, and professional practices, thereby becoming deeply embedded in society^22,23.

Consequences of stigma and discrimination among Family Care Givers:

Stigma in mental illness is a serious social problem that has a multitude of consequences on the individual concerned and his or her family^9,24. Few studies have studied the positive effects of stigma and discrimination. However, the negative consequences outnumber the positive effects and are detrimental to the family as well as to the society. However, mental health professionals focus only on the index patient and the relatives’ needs and concerns are often ignored⁸.

Family caregivers are at an increased risk of suffering physically, psychologically and socially while providing care for family members with mental health conditions^25,26,27.

According to Literature, the consequences of stigma and discrimination includes:

· Physical consequences

· Indigestion,

· Weight gain,

· Insomnia,

· Loss of appetite, and

· Irritability.

· Psychological consequences:

· Reduced hope,

· Increased anxiety,

· Lower self-esteem,

· Depression and

· Suicidal attempts.

· Social consequences:

· Social Isolation

· Neglect by other members

· Fear of rejection.

· Occupational and financial consequences

· Irregular for work

· Financial loans

· Unable to adjust to work and colleagues

· Drowsy at job.

· Treatment related consequences:

· Poor adherence to treatment,

· Irregulars follow up.

· Chronically of illness.

CONCLUSION:

The problem of stigma and discrimination is identified as one of the most significant barriers to reducing the mental health treatment gap globally. Mental illness. Mental illness stigma feeds a negative spiral of silence and suffering that leads to successive cycles of stigma and discrimination²⁸. However, the effects of stigma on caregivers, remain understudied in many countries including India²⁹. Reducing public stigma is an aim in India’s national mental health policy³⁰. family psycho educational program could change the negative attitude in relatives of patients³⁸.

A study concluded that developing community based supportive educative programs for patients and care givers at the home and community level to combat stigma and discrimination is essential to counter social rejection and promote re-integration and participation in society. In addition to this the mental health literacy of the community needs to be improved which is a significant barrier in mental illness. Thus, these efforts will improve compliance to medications and reduce burden on caregivers^31,32.

Besides this decision and policy makers need to include caregivers while formulating policies for the betterment of the caregivers. The media is a powerful weapon of change which can benefit the society by broadcasting relevant factual information about the mental illness through advertisements, media coverage, television broadcast and the latest being the social media and networking. Future research in stigma needs to be clinically driven and quantitative to develop standards of care³³.

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Received on 11.06.2023 Modified on 27.06.2023

Asian J. Nursing Education and Research. 2023; 13(4):312-316.

DOI: 10.52711/2349-2996.2023.00064