Understanding the Lived Experience of Severe Mental Illness

October 2016Diana Austin

In 2004, in response to an ongoing shortage of mental health services, California voters passed Proposition 63, now known as the Mental Health Services Act (MHSA). The law added a tax on the state’s wealthiest residents to fund programs and resources designed to increase access to mental health services, particularly in the many California areas designated as federal Mental Health Professional Shortage Areas.

That funding has supported UC San Francisco School of Nursing’s Psychiatric/Mental Health Nurse Practitioner (PMHNP) program as it develops innovative programs to prepare advanced practice nurses to provide mental health care in ways that respect individuals’ experiences and needs.

Looking at the Lived Experience of Mental Illness

Deborah Johnson One aspect of that work sends PMHNP students to work in underserved communities, so they can gain direct experience. In addition, the School now hosts a quarterly symposium that brings together faculty and students with community mental health workers, advocates and people with mental illness to talk about what works and what people with mental health challenges need in order to live successful, fulfilling lives in the community.

“Understanding perspectives on the lived experience of mental illness is a strong value of the MHSA,” says faculty member Deborah Johnson, who coordinates the symposia. The seminars have provided real-world examples of successful recovery-oriented care, a model that emphasizes supporting people with mental illness in taking and maintaining control of their care and their lives rather than simply managing symptoms.

A Personal Perspective on Hearing Voices

The fall 2015 symposium focused on a particularly challenging mental health problem: helping people who hear voices, a condition known as auditory hallucinations. Speakers at the event included members of the Bay Area Hearing Voices Network (BAHVN), a group of advocates, professionals, families and people who hear voices and are working to improve understanding of their lives.

They discussed the group’s history and philosophy, which holds that hearing voices is a natural part of the human experience, and offered attendees insights into research and their experiences of living with auditory and other hallucinations, emphasizing the importance of person-centered care. Attendees also watched a short film produced by the organization Compassion for Voices, which invites viewers to experience a day in the life of a man who hears voices as he faces challenges and begins therapy to help him engage with his voices and develop what the filmmakers call his “compassionate self.”

Debra Lampshire, Ira Steinman The winter 2016 symposium featured speaker Debra Lampshire, a teacher at the University of Auckland’s Centre for Mental Health Research, who provided a unique perspective as someone who hears voices but is able to live and function well both personally and professionally after spending 18 years in a locked mental health facility.

Among the ideas Lampshire brought to attendees was the importance of addressing and changing the relationship with voices. “The voice-hearing experience has meaning, is related to live circumstances and is comprehensible,” she told them. She described her personal relationship with her voices, noting that, despite the fact that they are sometimes “abusive,” she always treats them “with kindness and respect.”

In a seminar for mental health nursing students that followed the symposium, Lampshire listened to case presentations, providing insight and guidance from the patient’s point of view. She advised one student not to encourage a patient to ignore his voices, saying, “If you ignore the voices, they get even madder. You have to reckon with them.”

In May, symposium attendees heard from San Francisco psychiatrist Ira Steinman, whose work combines psychoanalytic psychotherapy with judicious use of pharmacological treatment for auditory hallucinations and other symptoms of mental illness. He outlined his person-centered approach to and success with patients considered to have severe mental illness, which emphasizes engaging individuals in exploring the meaning behind their symptoms.

Developing Student-Led Topics

The choice to focus last year’s symposia on auditory hallucinations was the result of Johnson’s inviting second-year PMHNP students to co-coordinate these presentations. Student Manton Hurd, who serves on the BAHVN board, made the suggestion. “He came into the program with a really different perspective from the typical [student] on the whole issue of severe mental illness,” says Johnson.

Symposia for the 2016-2017 academic year will focus on the mental health of adolescent and transition-age youth, particularly those in the LGBT community, thanks to the interest of Johnson’s co-coordinator for the year, student Brian Lasofsky. The next symposium is scheduled for November 16, from noon to 1 p.m., at the School of Nursing, room N 217.

Not Just for Mental Health Clinicians

Beginning last year, Johnson and her colleagues opened the symposia to all comers, encouraging students and faculty from across UCSF schools to attend. The prevalence of mental illness – according to the National Institute of Mental Health, one in 25 Americans has serious functional impairment due to mental illness – ensures that most clinicians will encounter patients with mental illness during their careers. The shortage of mental health care providers means that many, particularly those in primary care, will shoulder much of the initial responsibility for screening, diagnosing and treating patients with mental illness, including those with severe symptoms.

While programs like the symposia won’t turn other clinicians into mental health care providers, Johnson hopes they will expose them to concepts and perspectives that can help them deliver more compassionate care to individuals with even the most challenging symptoms, who often don’t feel welcome in general health care settings.

She says, “It’s important to educate everyone who provides care to understand mental illness, and to view people with compassion.”