Elaine Bell has a problem with people who don’t listen. “I can’t understand why someone who doesn’t know me very well thinks they know what I need, better than I do myself,” she says.
Bell, a retired nurse and factory worker, thinks back to a difficult time—with miscarriages and a demanding work and home life—when a mental health crisis brought her to a psychotherapist. “She wanted to talk about my relationship with my husband, and I wasn’t ready to deal with anything but my losses. She didn’t let me go where I needed to go.”
Finding a more responsive therapist wasted valuable time, Bell says. And she knows that many women—particularly those with financial difficulties—never get help at all, either for their mental health conditions or other problems.
Now, Bell is in a position to do something about it. As a community partner in a PCORI-funded project, she has been instrumental in designing a study to test what happens when vulnerable, troubled women are connected to people who do listen and are trained to help them help themselves.
As Ellen Poleshuck, PhD, Principal Investigator for the project, explains, socioeconomically disadvantaged women are at high risk for depression and unlikely to get effective treatment—even when it’s available. “We have evidence-based approaches for treating depression that work quite well, but we know that many people aren’t using them,” says Poleshuck, associate professor of psychiatry and obstetrics and gynecology at the University of Rochester.
Her earlier research suggests, for example, that many disadvantaged women view standard treatment as “disrespectful of their preferences and priorities,” she says. “They thought neither medication nor psychotherapy could create the life changes they needed.”
For these women, Poleshuck explains, depression usually appears amid a swarm of difficulties: relationship and parenting problems, domestic violence, eviction threats, trouble putting food on the table. “Traditional approaches to depression often fail to consider the context in which it occurs,” Poleshuck says.
This study focuses on how to do a better job understanding and responding to what women say they need and want, instead of giving them what we think they need.
Getting on the Same Page
“This study focuses on how to do a better job understanding and responding to what women say they need and want, instead of giving them what we think they need,” Poleshuck says.
The projected 200 patients in the study are being recruited at a women’s clinic in Rochester, the third poorest city in the nation. “We know that underserved women don’t go to mental health specialty settings,” Poleshuck says, “but 22 percent of those who come to the Women’s Health Center—whether for prenatal care, contraception, abortion, or pelvic pain—meet criteria for clinical levels of depressive symptoms.”
In Poleshuck’s current study of clinic patients who score high on depressive symptoms, the patients are randomized into two groups. Participants in one group receive enhanced screening and referral (ESR): evaluation for psychological, behavioral, and social problems; an opportunity to identify their most pressing concerns; and a list of resources—clinics, domestic violence shelters, social service offices—that can help them with these issues.
Participants in the other group are offered a more intensive program called personalized support and progress (PSP). After the same evaluation as in ESR, each patient is paired with a woman of similar background who has undergone mentor training. The mentor and patient work together for the next four months, navigating ways to address the problems the patient considers most important.
After four months, the researchers will compare depression symptoms, quality of life, and satisfaction with care of the two groups.
This study of depression is unusual in that some participants, Poleshuck expects, will not want depression medication or psychotherapy. She notes, “Some patients enter the study actively engaged in mental health treatment, and we anticipate that some will be eager or at least open to becoming involved in it. But some won’t consider the possibility.” However, she suggests, some patients working with mentors may later become more receptive to depression therapy.
“Overall, we can’t say how often mental health treatment will be part of the program—that’s part of what we’re interested in discovering,” Poleshuck says. “We work hard not to impose goals on patients. There’s a huge range of tasks mentors work on with them.” For example, one woman was having trouble with the paperwork needed to apply for Social Security disability benefits; the mentor walked her through the process and helped her get to required appointments. Another wanted to find a job; the mentor is working with her on building a resume and developing skills.
For some women, the study may find, overcoming real-life problems is enough to improve mental health, even without specific therapy for depression.
It’s amazing when someone gives you back the power to live your own life.
Shared Decisions from the Start
The patient perspective has been central since the project’s planning stages, when Poleshuck and her colleague and co-Principal Investigator Catherine Cerulli, JD, PhD, brought together a Community Advisory Board that included patients, physicians, social workers, psychologists, and social service providers.
“We had conversations for nearly two years to define what problems to address and which women to target. We’d considered survivors of violence and women with chronic pain, as well as those with depression. We discussed what interventions to use and outcomes to measure,” Poleshuck says.
As a survivor of domestic abuse and an advocate for reform, Bell was among the original members of the board. “Elaine played an important role in developing the manual that the mentors use,” Poleshuck says.
When researchers sought volunteers for a core consultation team to meet biweekly to direct the project’s day-to-day operations, Bell stepped up. Now, that team meets with the researchers and mentors to discuss cases and make recommendations. Poleshuck says, “Elaine keeps grounding us in a way that’s consistently been helpful.”
Practicality, Bell agrees, is a big part of what she brings to the party. “They’re professionals. And there are times when they get too pie-in-the-sky,” she says. For example, they didn’t recognize that it would be almost impossible for a pregnant women to get a job.
Bell feels that her input is valued. “The researchers are so open to suggestions, so easy to talk to,” she says. “That to me has been amazing. Sometimes it’s hard to admit, especially for professionals, there may be a better way, but anything they think will stand a chance, they’ll give it a shot.”
Most important, Bell says, is the team’s total consensus on its goal—empowering patients to solve their own problems. “We come from different places, different disciplines, yet when we sit at the table, we’re all on the same page.”
“It’s amazing when someone gives you back the power to live your own life,” Bell says. “To me, getting involved in this project is coming full circle. It’s everything I already believe in.”
Patient Priorities and Community Context: Navigation for Disadvantaged Women with Depression
Principal Investigator: Ellen Poleshuck, PhD
Goal: To compare symptom reduction and quality of life after more and less intensive programs designed to help disadvantaged women with depression address the life problems most important to them.
Posted: August 27, 2014