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

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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 , wanted to focus on what researchers see as an overlooked demographic.

鈥淲e 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,鈥 Joel Goldberg, a health professor with the Department of Psychology at York University, said in a press release. 鈥淲e found that family members were not receiving the social support they needed, even from other family members.鈥

The phenomenon, called 鈥渟tigma by association,鈥 is essentially a splash zone effect caused by targeted discrimination 鈥 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鈥檚 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 鈥渁voided鈥 by other family members after he received his diagnosis of schizophrenia.

鈥淲hen we told our family, they shut us out, I am so hurt, and so angry,鈥 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鈥檚 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鈥檚 regular decision-making.

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

鈥淭he 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,鈥 Goldberg said. 鈥淭hese ideas become the basis of the stigma, and families are then associated with it.鈥

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鈥檚 mental illness was something reported by many family members.

鈥淩aising a child has been very difficult due to stigma,鈥 a 58-year-old mother of a 24-year-old son with a serious mental illness said in the study. 鈥淏eing blamed as a 鈥榖ad parent鈥 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.鈥

A recurrent thread was the persistent feeling among those surveyed that their lives didn鈥檛 matter, a concept Canada Research Chair Gordon Flett, who is one of the authors of the study, describes as 鈥渁nti-mattering.鈥 Flett鈥檚 research often looks at how lacking a feeling of 鈥渕attering鈥 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鈥檚 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 鈥 suggesting that the family members they spoke to have some form of support through these organizations 鈥 the figure of one in three family members experiencing stigma may be even higher in the broader population.

They鈥檙e hoping that interventions can be developed to help this group, for whom there aren鈥檛 many supports currently.

鈥淚f 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,鈥 Goldberg said. 鈥淲e'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.鈥

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