Stigma faced by caregivers increases their burden and their ability to care
Canadian sociologist Erving Goffman defines stigma as an attribute, behavior, or reputation which is socially discrediting in a particular way. Goffman’s theory says stigma causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one. Stigma is not an alien word to those whose suffer from mental health issues. In fact, Dr Norman Sartorius, former director of the World Health Organization’s (WHO) mental health division, points at stigma as being the single largest cause that blocks the treatment of those with mental illnesses. But is the stigma associated with mental illness faced by the patient alone? Studies, though few in number, indicate that families of people with mental health issues also face stigma by association with the stigmatized.
In a paper published in the British Journal of Psychiatry, Margareta Ostman and Lars Kjellin study the associative stigma faced by caregivers and relatives of the mentally ill. They describe associative stigma (also called stigma by association and courtesy stigma) as the process by which an individual is stigmatized by virtue of their association with another stigmatized person.
Caregivers of persons whose symptoms of mental illness are pronounced and persist for a long time find it difficult to avoid stigma. “In cases where the illness is a short-term one, given the public perception, caregivers share information with neighbours and relatives only on a need-to-know basis. However with a long-term illness this becomes tough,” says Dr T Sivakumar, assistant professor of psychiatric rehabilitation, NIMHANS.
Dr Aarti Jagannathan, assistant professor, department of psychiatric social work, NIMHANS.
What is stigma by association?
Stigma by association can be defined as a process in which a person is stigmatized simply for their association or similarity with a person who is stigmatized. Stigma by association can be external, in which society stigmatizes the family of a mentally ill person, or internal, where the family of a mentally ill person believes the wrong societal perception of mental illness and expects to be stigmatized.
In addition to societal perception, stigma is also seen to stem from some other specific causes.
Perceived heredity and guilt of inaction
Families of people with mental illness often feel stigmatized by the perception that a mental illness is genetic or hereditary. This stems from the lack of knowledge about disorders, both among caregivers and society. While some illnesses can be hereditary, they may or may not manifest among relatives. In a study conducted on 527 family members of people with mental illness, it was found that people who believed that mental illness is hereditary showed psychological distress. "This seems to suggest that when mental illness is considered genetically determined, uncertainty about one’s health may ensue and concerns regarding latent mental illness may result. We believe that being confronted with a family member's mental illness and stigma may stimulate fear and uncertainty," says the study.
‘Stress’ is often wrongly seen as the cause of a mental disorder causing caregivers to think that they have inordinately caused the mental illness to occur. This self-stigma can be easily dealt with by counselling families of people with mental illness and explaining the disorder to them.
When a patient responds to treatment and gets better, caregivers often blame themselves for not bringing the patient to a mental health expert sooner. They blame themselves for having failed to see the early signs and feel responsible for the suffering of the patient.
Dr T Sivakumar.
Self-stigmatization from guilt and misinformation can be cleared and clarified by talking to a psychiatrist openly about your fears and doubts
Embarrassment due to inability to achieve life goals
This cause of stigma is especially true in the Indian context. When social milestones such as completion of education, marriage and employment are not achieved, both the person with mental illness, and the family, tend to withdraw from their own social interactions. Caregiving parents find this to be frustrating and this burden often builds up and affects their ability to care for their ward.
Delay in seeking treatment
The most troubling by-product of stigma is that caregivers of the mentally ill delay approaching medical treatment for fear of being labeled as a family with mental illness. “Often they hope it will pass and only bring the patient to a psychiatrist when the symptoms are out of hand,” says Dr T Sivakumar.
Stigma can cause great psychological distress in caregivers and people with mental illness. The distress may arise from worries and unrest associated with one’s place in society or among extended family and friends. Such psychological distress when not checked can affect the mental health of the caregiver. Experts recommend that caregivers consult with mental health experts and talk about their concerns to dispel any misgivings.
Social exclusion and isolation
Social exclusion can take place by initiation from the caregiver or by society.
The fear of being stigmatized often causes the families of people with mental illness to isolate themselves from their social circles. While some people withdraw completely and never go out, others exclude the person with the mental illness from social gatherings such as weddings, parties and pujas, and avoid discussing them in public. Often, recovering from mental illness is aided by support from family and friends, and isolation robs the patient from the benefits of these associations.
The distress caused by stigma can push caregivers to distance themselves from the patient and reduce the care they provide over a period of time. In the study mentioned above, researchers say, “The results also show SBA (Stigma by Association) to correlate positively to psychological distress and negatively to perceived closeness. This supports the contention that stigma by association may motivate family members of PWMI (Persons With Mental Illness) to psychologically distance themselves from a relative with a mental illness, perhaps in an effort to detach oneself from the stigma carried by their family member.”
Stigma, whatever maybe the cause, can be tackled by accessing the right information and education. Mental health experts point out that the onus of doing away with stigma associated with mental illness lies with society, as opposed to caregivers and the mentally ill. “In the current structure, caregivers already suffer from an immense financial and psychological burden. Reducing stigma in society will help them cope better,” says Dr Jagannathan.