stigma and barriers to care - Uniformed Services University of the ...

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Stigma and Barriers to Care — Caring for Those Exposed to War, Disaster and Terrorism
research because I had gained knowledge on two of the dominant theories of helpseeking
that existed when I started my research agenda: the health belief model and
the socio-behavorial model. Unfortunately, after looking at those models for a while,
I could not figure out how they matched reality. They were cleaner, more elegant, and
had a nicer match with research methods than what I knew from looking around me.
Therefore, I embarked on an agenda to develop a different way of thinking about
the ways people enter into services. It is a messier and more complex way of thinking,
but it is based in the notion of social networks. Social networks may or may not get
people into care, depending upon culture. I started looking at networks and saw,
for example, that on the upper west side of Manhattan, having social networks got
people into care, while in Puerto Rico social networks were keeping people out of
care. That points to a large cultural difference.
I looked at the literature on what people think, believe, and feel about the use
of health services. Due to the lack of research on the topic I realized that it was not
a popular area to study. When I came upon a line of research pertaining to stigma,
I called one of the premiere stigma researchers in the country, Bruce Link, and said,
“I think this is something we need to think about.” At that time I was sitting on the
overseers’ board of the General Social Survey, which has existed since 1972 and
is the longest running monitor of American public opinion, beliefs, attitudes, and
behaviors. I thought this would be the place to replicate the three national studies
on stigma existing in the United States.
The first national study was done in 1950 by Shirley Starr under the auspices of
the National Opinion Resource Center (NORC). The study was never published, but
NORC saved every one out of three of the original surveys. The second and third
studies were the Americans View Their Mental Health studies done at the University
of Michigan in 1956, 1957 and 1976. We drove up to Michigan and found all of the
original surveys. In looking at these studies, not only could we get a sense of what
stigma looked like in the United States now (1996), but in a rigorous way we could
get a sense of how it had changed.
At that point Bruce Link and I went begging for money. Neither the National
Institutes of Health (NIH) nor the National Science Foundation (NSF) were interested
so we turned to the private foundations. Under the imprimatur of Dr. Ron
Kessler, we were able to secure money to do the first national study of stigma in 40
years. And that started a 15 year process.
I would like to give you the eight most important findings we have from that
line of research, but first I would like to present the four key points that guided our
research. First, stigma disqualifies individuals from citizenship, so stigma is not just
centered solely on treatment. It is about acceptance in the family sphere and in the
work place. Second, stigma is an attribute known to others, only occurring in social
interaction. Thus, as a basis for understanding, we wanted to either observe social
interactions or ask people about their social interactions. Third, stigma has different
forms. Fourth, stigma is dynamic, not static, and it creates careers. Whether we are
talking about careers in the workplace, in the military, or in domestic life, we get a
real sense of dynamics from looking at this aspect of stigma.
There are different types of stigma. Today I will mainly focus on public stigma.
I think this is important because it sets the cultural context in which people experience
the onset of mental health problems, in which others respond to them, and in
which they either go on to live a full life, what we now call recovery, or they live a
life that is damaged by others’ responses to that illness. A second type of stigma, self