Relatives of people with serious mental illness often bear brunt of stigma: study

Those who experience serious mental health issues often face stigma from society, but a new study has found that their close family members also bear the brunt of that stigma.

One out of three family members of those dealing with little-understood mental illnesses such as schizophrenia or disordered thinking reported that they feel isolated and stigmatized simply for this close relationship.

The study, which was published last month in the peer-reviewed International Journal of Environmental Research and Public Health, wanted to focus on what researchers see as an overlooked demographic.

“We wanted to reach out to a group of people who we think have been especially marginalized and one of the things that we noticed right away, is that this is a group of people who have really not been well studied. And that really speaks to how isolated they are,” Joel Goldberg, a health professor with the Department of Psychology at York University, said in a press release. “We found that family members were not receiving the social support they needed, even from other family members.”

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The phenomenon, called “stigma by association,” is essentially a splash zone effect caused by targeted discrimination — when a group or person is directly stigmatized by society or other individuals, those around them feel the effects as well.

Researchers reached out through a number of advocacy and health groups, including the Institute for Advancements in Mental Health, the Canadian Mental Health Association, Reconnect Community Health Services and the Schizophrenia Society of York, in order to survey family members living with relatives who had severe mental illnesses, including schizophrenia, other psychotic disorders, and bipolar and major depression, among others.

They surveyed 124 family members in total, 81 of whom lives at home with the relative in question and 43 who did not live in the same residence as them. Family members were asked to fill out questionnaires that included questions such as whether they had ever felt like they needed to hide their relative’s mental illness in front of others, and whether they felt they had people to lean on if need be.

Family members reported feeling loneliness, isolation, and feelings of blame or failure. Many felt unsupported, with a third passing the threshold for experiencing stigma by association.

One 62-year-old mother of an adult son told York researchers that she and her son were “avoided” by other family members after he received his diagnosis of schizophrenia.

“When we told our family, they shut us out, I am so hurt, and so angry,” she is quoted as saying in the study.

Another participant reported that their sister had cut them off since discovering the mental illness of that participant’s close family member.

Schizophrenia is experienced by around one per cent of the population, and is commonly characterized by auditory hallucinations, delusions and disordered thinking that can severely impact an individual’s regular decision-making.

It’s also a condition that has been severely misrepresented in media, leading to further stigma against it, researchers said.

“The few times when the public hears stories about people with schizophrenia, they hear about someone who hasn't been taking their medicine, or acts of violence,” Goldberg said. “These ideas become the basis of the stigma, and families are then associated with it.”

Researchers found that family members who lived in the same house as their relative who has a serious mental illness were more likely to report feeling stigmatized.

This may be because they have taken on additional caregiving duties that bring added stress and the risk of burnout, researchers said.

The feeling that society blamed them for their relative’s mental illness was something reported by many family members.

“Raising a child has been very difficult due to stigma,” a 58-year-old mother of a 24-year-old son with a serious mental illness said in the study. “Being blamed as a ‘bad parent’ was a frequent occurrence for years; from immediate family to strangers, to teachers, to health professionals. It was excruciatingly difficult, and contributed to chronic feelings of self-blame, feeling like a failure, feelings of helplessness, hopelessness, confusion, chaos, isolation.”

A recurrent thread was the persistent feeling among those surveyed that their lives didn’t matter, a concept Canada Research Chair Gordon Flett, who is one of the authors of the study, describes as “anti-mattering.” Flett’s research often looks at how lacking a feeling of “mattering” can lead to or exacerbate other mental health struggles.

The study found that family members who struggle with this feel as though they cannot talk about their experiences because of fear of overshadowing their relative’s struggles, or hurting them, and ended up feeling as though their own lives were less important on the whole.

Researchers noted that since they found participants through community organization connections — suggesting that the family members they spoke to have some form of support through these organizations — the figure of one in three family members experiencing stigma may be even higher in the broader population.

They’re hoping that interventions can be developed to help this group, for whom there aren’t many supports currently.

“If you're made to feel insignificant, if you are feeling like those around you treat you as if you're invisible, this can have really harmful effects on your sense of well-being,” Goldberg said. “We're hoping with this Mental Health Week that this will give great attention to family members, and let them know that we do not see their lives as being insignificant, that we don't see them as being invisible, that their lives matter.”