For people with SMI, disclosure still challenging

ROCKVILLE, MD. – People working in the mental health field are more likely to disclose their past or present treatment for psychosis than are professionals in other fields, a researcher said at a National Institute of Mental Health conference on mental health services research.

The researcher, Nev Jones, PhD, presented the findings of a small survey she conducted in 2014 and 2015 of adults with current or past experiences of psychotic disorder who described themselves as having had or having a successful career. The research was not conducted for publication purposes but as part of an effort to develop tools for students with psychosis as they continued in higher education, said Dr. Jones, of the department of mental health law and policy at the University of South Florida, Tampa.

One of those tools was a closed program that was akin to Facebook; people with early psychosis could use this to “look at successful adults across a wide range of careers and how they had navigated accommodations, disclosure, education as well as vocational choice,” she said.

Dr. Jones did not ask participants about their gender and race, but she did query them on highest degree earned. The poll was disseminated with the assistance of the National Alliance on Mental Illness and that of Stanford (Calif.) University, where Dr. Jones was a postdoctoral fellow. Of the sample presented, 33% had a masters degree (MSW, MBA), and 15% had a doctoral level degree (JD, MD, PhD).

People who worked in fields outside of mental health care were far less likely to have revealed their conditions to colleagues or employers, with 14 of 67 participants having made no disclosure. Of 14 who had made no disclosure, 12 were in fields such as banking, economics, secondary education, nursing, pediatrics, and computer programming.

Dr. Jones said she received several calls from students and staff at Stanford who were unwilling to fill out the survey.

“They were very concerned about the risks of inadvertent disclosure, even though it was anonymous, because they had unique, potentially identifiable career paths that they could not lay out in their responses without the fear that that would disclose [identify] them,” Dr. Jones said.

An additional 17 of the 67 participants made what Dr. Jones termed “selective disclosures,” such as telling a coworker who was considered a friend or a supportive boss. The majority of the respondents to Jones’s survey – 36 of the 67 participants – were open about their conditions. All but one of the respondents in this broad-disclosure group worked in mental health fields.

Dr. Jones described the broad-disclosure designation as “meaning that there is nobody in their life who doesn’t know.”

“They’re out professionally. They’ve published a book. They speak,” Dr. Jones said. “If you Google them on the Internet, you would quickly learn that they had a psychiatric disability or psychosis.”

Dr. Jones herself falls into that camp. She’s told media outlets, including the online newspaper MinnPost, about her own experience being diagnosed with schizophrenia while a PhD student. The online magazine Pacific Standard ran a full-length feature about her return to academia.

About 100,000 adolescents and young adults in the United States experience first-episode psychosis each year, and the peak onset hits between 15 and 25 years of age, according to the NIMH. About a decade ago, the NIMH launched its Recovery After an Initial Schizophrenia Episode (RAISE) initiative to examine use of coordinated specialty care treatments for people who were experiencing a first episode of psychosis. Congress in 2014 moved to provide a stream of federal funding for those kinds of efforts.

“We’re going to be soon starting to discharge, on an annual basis, potentially tens of thousands of young people from these specialized early intervention programs,” Dr. Jones said. “So it becomes really pressing to understand what’s happening to them in the context of reintegration.”

Another presenter at the panel, Marjorie L. Baldwin, PhD, of Arizona State University, Tempe, is an economist who has published a book based, in part, on her son’s struggles, “Beyond Schizophrenia: Living and Working With a Serious Mental Illness” (Lanham, Md.: Rowman & Littlefield Publishers, 2016).

She presented findings from a pilot study for a larger project looking at the issue of disclosures of serious mental illness in the workplace. She and her colleague in this work, Steven C. Marcus, PhD, of the University of Pennsylvania, Philadelphia, separately spoke about the difficulties in securing funding for the project, including five failed R01 grant applications.

“The 6th time was the charm with NIH,” Dr. Baldwin said.

An initial hurdle was finding a cost-effective way to identify workers with serious mental illness who hold or have held what she termed “competitive jobs,” which Dr. Baldwin described as those that paid at least minimum wage and are not subsidized for people with disabilities.

“You cannot do this kind of a study with random dialing because it would be way too expensive,” she said. “Schizophrenia and serious mental illnesses are not rare, but they are fairly uncommon.”

Several years ago, though, she learned of a long-running health survey into which she could “piggyback” questions on mental health status. She presented results of a pilot study with about 230 people with serious mental illness who had held or had competitive jobs. Of this group, 52% had left their most recent job for reasons other than mental illness, while those conditions had caused an additional 21% to leave. But Dr. Baldwin and her colleagues found 27% still working.

Like Dr. Jones, Dr. Baldwin said some of those workers were in professional fields, such as accounting, law, education; others worked in the service and construction industries.

“Contrary to the stereotypes, people with serious mental illness whose symptoms are reasonably well controlled can work, and many are capable of supporting themselves in mainstream competitive jobs,” Dr. Baldwin said.

Dr. Jones had no disclosures tied to her survey. Dr. Baldwin and Dr. Marcus had no disclosures other than the NIH R01 grant.

ROCKVILLE, MD. – People working in the mental health field are more likely to disclose their past or present treatment for psychosis than are professionals in other fields, a researcher said at a National Institute of Mental Health conference on mental health services research.

The researcher, Nev Jones, PhD, presented the findings of a small survey she conducted in 2014 and 2015 of adults with current or past experiences of psychotic disorder who described themselves as having had or having a successful career. The research was not conducted for publication purposes but as part of an effort to develop tools for students with psychosis as they continued in higher education, said Dr. Jones, of the department of mental health law and policy at the University of South Florida, Tampa.

One of those tools was a closed program that was akin to Facebook; people with early psychosis could use this to “look at successful adults across a wide range of careers and how they had navigated accommodations, disclosure, education as well as vocational choice,” she said.

Dr. Jones did not ask participants about their gender and race, but she did query them on highest degree earned. The poll was disseminated with the assistance of the National Alliance on Mental Illness and that of Stanford (Calif.) University, where Dr. Jones was a postdoctoral fellow. Of the sample presented, 33% had a masters degree (MSW, MBA), and 15% had a doctoral level degree (JD, MD, PhD).

People who worked in fields outside of mental health care were far less likely to have revealed their conditions to colleagues or employers, with 14 of 67 participants having made no disclosure. Of 14 who had made no disclosure, 12 were in fields such as banking, economics, secondary education, nursing, pediatrics, and computer programming.

Dr. Jones said she received several calls from students and staff at Stanford who were unwilling to fill out the survey.

“They were very concerned about the risks of inadvertent disclosure, even though it was anonymous, because they had unique, potentially identifiable career paths that they could not lay out in their responses without the fear that that would disclose [identify] them,” Dr. Jones said.

An additional 17 of the 67 participants made what Dr. Jones termed “selective disclosures,” such as telling a coworker who was considered a friend or a supportive boss. The majority of the respondents to Jones’s survey – 36 of the 67 participants – were open about their conditions. All but one of the respondents in this broad-disclosure group worked in mental health fields.

Dr. Jones described the broad-disclosure designation as “meaning that there is nobody in their life who doesn’t know.”

“They’re out professionally. They’ve published a book. They speak,” Dr. Jones said. “If you Google them on the Internet, you would quickly learn that they had a psychiatric disability or psychosis.”

Dr. Jones herself falls into that camp. She’s told media outlets, including the online newspaper MinnPost, about her own experience being diagnosed with schizophrenia while a PhD student. The online magazine Pacific Standard ran a full-length feature about her return to academia.

About 100,000 adolescents and young adults in the United States experience first-episode psychosis each year, and the peak onset hits between 15 and 25 years of age, according to the NIMH. About a decade ago, the NIMH launched its Recovery After an Initial Schizophrenia Episode (RAISE) initiative to examine use of coordinated specialty care treatments for people who were experiencing a first episode of psychosis. Congress in 2014 moved to provide a stream of federal funding for those kinds of efforts.

“We’re going to be soon starting to discharge, on an annual basis, potentially tens of thousands of young people from these specialized early intervention programs,” Dr. Jones said. “So it becomes really pressing to understand what’s happening to them in the context of reintegration.”

Another presenter at the panel, Marjorie L. Baldwin, PhD, of Arizona State University, Tempe, is an economist who has published a book based, in part, on her son’s struggles, “Beyond Schizophrenia: Living and Working With a Serious Mental Illness” (Lanham, Md.: Rowman & Littlefield Publishers, 2016).

She presented findings from a pilot study for a larger project looking at the issue of disclosures of serious mental illness in the workplace. She and her colleague in this work, Steven C. Marcus, PhD, of the University of Pennsylvania, Philadelphia, separately spoke about the difficulties in securing funding for the project, including five failed R01 grant applications.

“The 6th time was the charm with NIH,” Dr. Baldwin said.

An initial hurdle was finding a cost-effective way to identify workers with serious mental illness who hold or have held what she termed “competitive jobs,” which Dr. Baldwin described as those that paid at least minimum wage and are not subsidized for people with disabilities.

“You cannot do this kind of a study with random dialing because it would be way too expensive,” she said. “Schizophrenia and serious mental illnesses are not rare, but they are fairly uncommon.”

Several years ago, though, she learned of a long-running health survey into which she could “piggyback” questions on mental health status. She presented results of a pilot study with about 230 people with serious mental illness who had held or had competitive jobs. Of this group, 52% had left their most recent job for reasons other than mental illness, while those conditions had caused an additional 21% to leave. But Dr. Baldwin and her colleagues found 27% still working.

Like Dr. Jones, Dr. Baldwin said some of those workers were in professional fields, such as accounting, law, education; others worked in the service and construction industries.

“Contrary to the stereotypes, people with serious mental illness whose symptoms are reasonably well controlled can work, and many are capable of supporting themselves in mainstream competitive jobs,” Dr. Baldwin said.

Dr. Jones had no disclosures tied to her survey. Dr. Baldwin and Dr. Marcus had no disclosures other than the NIH R01 grant.

ROCKVILLE, MD. – People working in the mental health field are more likely to disclose their past or present treatment for psychosis than are professionals in other fields, a researcher said at a National Institute of Mental Health conference on mental health services research.

The researcher, Nev Jones, PhD, presented the findings of a small survey she conducted in 2014 and 2015 of adults with current or past experiences of psychotic disorder who described themselves as having had or having a successful career. The research was not conducted for publication purposes but as part of an effort to develop tools for students with psychosis as they continued in higher education, said Dr. Jones, of the department of mental health law and policy at the University of South Florida, Tampa.

One of those tools was a closed program that was akin to Facebook; people with early psychosis could use this to “look at successful adults across a wide range of careers and how they had navigated accommodations, disclosure, education as well as vocational choice,” she said.

Dr. Jones did not ask participants about their gender and race, but she did query them on highest degree earned. The poll was disseminated with the assistance of the National Alliance on Mental Illness and that of Stanford (Calif.) University, where Dr. Jones was a postdoctoral fellow. Of the sample presented, 33% had a masters degree (MSW, MBA), and 15% had a doctoral level degree (JD, MD, PhD).

People who worked in fields outside of mental health care were far less likely to have revealed their conditions to colleagues or employers, with 14 of 67 participants having made no disclosure. Of 14 who had made no disclosure, 12 were in fields such as banking, economics, secondary education, nursing, pediatrics, and computer programming.

Dr. Jones said she received several calls from students and staff at Stanford who were unwilling to fill out the survey.

“They were very concerned about the risks of inadvertent disclosure, even though it was anonymous, because they had unique, potentially identifiable career paths that they could not lay out in their responses without the fear that that would disclose [identify] them,” Dr. Jones said.

An additional 17 of the 67 participants made what Dr. Jones termed “selective disclosures,” such as telling a coworker who was considered a friend or a supportive boss. The majority of the respondents to Jones’s survey – 36 of the 67 participants – were open about their conditions. All but one of the respondents in this broad-disclosure group worked in mental health fields.

Dr. Jones described the broad-disclosure designation as “meaning that there is nobody in their life who doesn’t know.”

“They’re out professionally. They’ve published a book. They speak,” Dr. Jones said. “If you Google them on the Internet, you would quickly learn that they had a psychiatric disability or psychosis.”

Dr. Jones herself falls into that camp. She’s told media outlets, including the online newspaper MinnPost, about her own experience being diagnosed with schizophrenia while a PhD student. The online magazine Pacific Standard ran a full-length feature about her return to academia.

About 100,000 adolescents and young adults in the United States experience first-episode psychosis each year, and the peak onset hits between 15 and 25 years of age, according to the NIMH. About a decade ago, the NIMH launched its Recovery After an Initial Schizophrenia Episode (RAISE) initiative to examine use of coordinated specialty care treatments for people who were experiencing a first episode of psychosis. Congress in 2014 moved to provide a stream of federal funding for those kinds of efforts.

“We’re going to be soon starting to discharge, on an annual basis, potentially tens of thousands of young people from these specialized early intervention programs,” Dr. Jones said. “So it becomes really pressing to understand what’s happening to them in the context of reintegration.”

Another presenter at the panel, Marjorie L. Baldwin, PhD, of Arizona State University, Tempe, is an economist who has published a book based, in part, on her son’s struggles, “Beyond Schizophrenia: Living and Working With a Serious Mental Illness” (Lanham, Md.: Rowman & Littlefield Publishers, 2016).

She presented findings from a pilot study for a larger project looking at the issue of disclosures of serious mental illness in the workplace. She and her colleague in this work, Steven C. Marcus, PhD, of the University of Pennsylvania, Philadelphia, separately spoke about the difficulties in securing funding for the project, including five failed R01 grant applications.

“The 6th time was the charm with NIH,” Dr. Baldwin said.

An initial hurdle was finding a cost-effective way to identify workers with serious mental illness who hold or have held what she termed “competitive jobs,” which Dr. Baldwin described as those that paid at least minimum wage and are not subsidized for people with disabilities.

“You cannot do this kind of a study with random dialing because it would be way too expensive,” she said. “Schizophrenia and serious mental illnesses are not rare, but they are fairly uncommon.”

Several years ago, though, she learned of a long-running health survey into which she could “piggyback” questions on mental health status. She presented results of a pilot study with about 230 people with serious mental illness who had held or had competitive jobs. Of this group, 52% had left their most recent job for reasons other than mental illness, while those conditions had caused an additional 21% to leave. But Dr. Baldwin and her colleagues found 27% still working.

Like Dr. Jones, Dr. Baldwin said some of those workers were in professional fields, such as accounting, law, education; others worked in the service and construction industries.

“Contrary to the stereotypes, people with serious mental illness whose symptoms are reasonably well controlled can work, and many are capable of supporting themselves in mainstream competitive jobs,” Dr. Baldwin said.

Dr. Jones had no disclosures tied to her survey. Dr. Baldwin and Dr. Marcus had no disclosures other than the NIH R01 grant.