Women with severe mental illness are 32 to 50 percent less likely to have regular mammograms, which are crucial to the early detection of breast cancer. Fueled by a grant from Jewish Family Services, nurses Sheila Linz and Bonnie Jerome-D’Emilia are advocating for interventions to increase access to breast cancer screening among women living with mental health conditions.
Linz, a psychiatric nurse practitioner and assistant professor in the Rutgers School of Nursing–Camden, and Bonnie Jerome-D’Emilia, an associate professor in the School of Nursing, interviewed 15 women to better understand how to increase screening rates among a vulnerable, at-risk population.
“Women with mental illness are diagnosed at a later stage and have worse prognoses upon diagnosis,” Linz said. “I have gone to nursing conferences for years as the lone voice standing up and saying that we cannot ignore this population.”
Unable to work, many individuals with mental illness reside in low-income areas with little access to screening centers. To better reach those populations, Linz and Jerome-D’Emilia partnered with the Women’s Health Network of Jewish Family Services (JFS), a nonprofit that provides wellness services, focusing on breast health for women with severe mental illness in the Atlantic City area.
Linz and Jerome-D’Emilia collected qualitative data about the patients’ experiences with breast cancer screening. In their responses, the patients discussed logistical barriers like transportation and childcare, along with social and emotional roadblocks caused by psychiatric symptoms, fear, distrust in the health care system, and other daily stressors.
“Mental illness can make it impossible just to get out of the house,” Jerome-D’Emilia said. “You know you have to go. You have an appointment, but you just can’t make it.”
For some patients, even scheduling an appointment is a challenge. Most screening centers require an imaging referral from a primary care physician. Many of the participants interviewed did not have an established primary care provider or had not kept up with annual visits. Several participants said they avoided the doctor out of fear of being inappropriately dismissed, misdiagnosed, or even accused of seeking drugs.
In minority communities, mental health stigma often intersects with racial bias. One participant, a Black woman with severe mental illness and a history of substance dependance, said she suffered a stroke after a doctor ignored her complaints of neck and spine discomfort.
“The doctor made a comment to her son, referring to them as ‘you people,’” Linz said. “Mother and son were both horrified. It turned out that she was very sick. The hospital administrators apologized, but it was too late to mitigate the damage to her health and her trust.”
Experiences like these dissuade patients from returning to their doctors to get reminders and referrals for routine screenings. Those who successfully schedule appointments may later back out due to fear of the procedure or discomfort with the possibility of receiving bad news about their health.
“When we asked providers of breast screenings if they had any patients with mental illness, they didn’t even know,” said Jerome-D’Emilia. “They must have patients with some level of mental illness, but they just aren’t aware of it, so they can’t adjust their approach accordingly. That’s a problem.”
Linz and Jerome-D’Emilia, with the support of a regional community advisory board they founded, are reimagining a system in which mental health care providers broaden their treatment paradigm to address the whole person, facilitating medical interventions when necessary. The proposed framework integrates mental and physical health, support, education, and even transportation to assist women with mental illness in pursuing preventative care. Linz and Jerome-D’Emilia hope these stories will encourage providers to examine and challenge their approach.
“Researchers may write about people with mental illnesses and their experiences, but you don’t often hear their voices,” said Jerome-D’Emilia. "We wanted to hear what the women had to say, and what they said was very powerful."
Creative Design: Beatris Santos