Education, transition support needed for effective diabetes management after incarceration
Formerly incarcerated adults with diabetes living in supervised community housing can benefit from accessible, literacy-tailored self-management education, yet data suggest such programs are lacking for this vulnerable population.
Diabetes prevalence among incarcerated people ranges from 4% to 9% when matched to the general population for age, race, sex and Hispanic origin, according to Louise Reagan, PhD, APRN, ANP-BC, FAANP, assistant professor at the University of Connecticut School of Nursing. Diabetes prevalence is also rising with the age of the incarcerated population, she said.
“In my preliminary work and research with incarcerated persons with diabetes, significant diabetes knowledge deficits, such as recognizing diabetes symptoms, treatment of hypoglycemia and hyperglycemia existed, and key self-care behaviors within the prison were not being performed,” Reagan told Healio. “This is a problem, because at least 95% of all people incarcerated in state prison are released back to their communities at some point and will be responsible to self-manage their diabetes along with competing demands to find housing, employment and reintegrate into society.”
Challenging ‘inadequate care’
In a 2018 editorial published in The Lancet, titled “Diabetes behind bars,” the journal noted that despite the existence of diabetes management guidelines from the Federal Bureau of Prisons, provision of such care is “highly variable and often lacking.” The editorial cited the use of private contractors and limited budgets, creating incentives for cost cutting that can undermine the health of people with diabetes and other incarcerated people, including through low-quality food from outsourced contractors.
“Imprisoned people should not have to suffer from inadequate health care,” the editorial states. “In the U.S. context, prisons are one of the few places where access to health care is guaranteed by law, thus representing a potential opportunity to improve the health of vulnerable populations.”
When it comes to diabetes management, what incarcerated people can do for themselves is extremely limited, according to Elizabeth Murphy, MD, DPhil, chief of the endocrinology and director of the Diabetes Center for High-Risk Populations at San Francisco General Hospital and professor of medicine at the University of California, San Francisco.
“As you might imagine, there are many logistical challenges to this,” said Murphy, who has led targeted diabetes-related outreach to San Francisco County Jail patients. “Often, meals are very early in the morning, at very strict times. People with diabetes must time their insulin to the meal, and that can be difficult. There are limited staff, guards and nurses, who are needed to go in and check the glucose and administer the insulin. Patients are typically not permitted to perform these activities themselves because you are giving them a sharp, which can be used as a weapon.”
Jails and prisons do tend to monitor HbA1c in incarcerated people with diabetes, Reagan said; however, that can also cause problems for people who do not know — or learn — how to manage their diabetes on their own.
“Jails and prisons do focus on HbA1c,” Reagan said. “I have talked to other directors of prisons, and HbA1c is something they monitor. The problem is when there are people doing everything for you for a good HbA1c, when you get out of prison in the United States, how do you maintain that on your own?”
‘Eager to learn’: Diabetes education in prison
In 2011, the American Diabetes Association published an updated position statement on diabetes management in correctional facilities, intended to help prisons to ensure care is provided in keeping with national standards. Recommendations include intake medical assessment, diabetes screening, uninterrupted continuation of treatment, and training of staff to recognize and respond to acute crises. The ADA also recommends provision of diabetes self-management education and healthy food options, as well as consistent carbohydrate content of meals to enable nutritional management.
However, experts agree that very little diabetes education is provided in correctional facilities.
To address the lack of diabetes education, Reagan and colleagues examined the feasibility, acceptability and preliminary effect of a 6-week, 1-hour per week “diabetes survival skills” intervention on diabetes knowledge, distress, self-efficacy and outcome expectancy for transitioning, incarcerated men. Among 92 participants, 84% had type 2 diabetes, 83% were using insulin; mean length of incarceration was less than 4 years (40% Black). Within the cohort, 41 completed the study (22 controls). The data were presented at the 2019 ADA Scientific Sessions.
The researchers found both groups showed improvement in diabetes-related distress and outcome expectancy, with the treatment group experiencing greater and sustained improvement at 12 weeks. Analysis of focus group data revealed acceptance of and enthusiasm for the diabetes survival skills training and low literacy education materials, and the need for skill demonstration and ongoing support throughout incarceration and before release. Due to high attrition, the power to detect effects was limited, Reagan said; however, results suggest the intervention is feasible and acceptable with an increased sample size.
“The diabetes survival skills program we did in the prison, the participants loved it,” Reagan said. “The big problem was attrition. Because of the way people are released to supervised community housing or to parole, someone who was ready to leave in 3 weeks can suddenly leave tomorrow. Some of those systems do not allow for this sort of planning for diabetes education.”
Murphy, who has helped run diabetes education programs in San Francisco prisons, said attendees seemed to benefit from such sessions.
“Logistically it was quite difficult, because you have to have parts of the prison willing to work with you, and a person who is cleared to do this work,” Murphy said. “In general, for those that attended, it was well received. They are eager to learn about their diabetes. They are eager to do better at living with diabetes. Providing more education opportunities for people with diabetes while in jail can only be beneficial, even if we don’t yet have great data on long-term outcomes.”
Some facilities conduct diabetes education as needed, so incarcerated people can learn how to self-administer insulin, Reagan said.
“But [the programs] are quick,” Reagan said. “There has been some work via group medical appointments, but again, this takes money, time and staff to run and sustain these programs. I am trying to bring my diabetes survival skills programs to supervised community housing and deliver it remotely. We want to provide something accessible to them at the point they most need it.”
Preparing for release
Coordinating follow-up care for people with diabetes who will be released from prisons or jails is essential to reduce risk for hyperglycemia, hypoglycemia and other adverse diabetes outcomes during a time of intense change and transition, experts said. Logistically, however, such planning is challenging.
“Another logistical problem is patients are suddenly discharged,” Murphy said. “A person could have a court time at 4 p.m., and then at 6 p.m. they are discharged. We have run into difficulties with coordination of care. We would like for them to have an appointment for diabetes care when they leave, but we don’t know when they are leaving and neither does the medical staff, who have no capacity to arrange for follow-up.”
Data suggest coordinated care affects diabetes outcomes. In a study published in 2017 in Health Affairs, researchers assessed data from the Transitions Clinic Network, a national network of medical homes for individuals with chronic health conditions recently released from incarceration. Researchers analyzed the impact of early engagement in primary care and referral from correctional systems to the Transitions Clinic Network on the use of acute care — ED visits and hospitalizations — and recidivism. Among 751 patients, 29.8% were referred by correctional partners and 52.7% were engaged with Transitions Clinic Network care within 1 month of release.
In the 12 months after release, patients referred by correctional partners had fewer acute care visits vs. those referred by community-based partners, whereas early engagement was associated with more acute care visits. Neither referral by correctional partners nor early engagement was significantly associated with recidivism.
“Our findings suggest that health equity for this vulnerable population could be achieved through improved coordination between correctional and community health care systems,” the researchers wrote.
Reagan acknowledged that myriad issues need to be addressed with reentry in addition to diabetes care, such as securing employment, housing and substance use, which further complicate care coordination.
“But we have these other chronic illnesses like diabetes, where they have to take on a lot of the self-care,” Reagan said. “The Transitions Clinic is a model for people recently released; however, it is in selected areas, and you have to make sure the person that is released gets there. They try to use community health workers, but many people do not have access to these clinics.”
Reagan said clinicians should ask all patients about any history of incarceration when addressing their diabetes management or other aspects of self-care.
“Practitioners and educators might ask all their patients about having a recent history of incarceration,” Reagan said. “Important factors to consider include time of diagnosis, such as a diagnosis during incarceration, what diabetes self-management skills were allowed in prison, and if the person is living in community supervised housing where certain skills, like medication taking, may not be carried out independently.”
Better data needed
Conducting interventions or studies inside a prison or jail offers more logistical challenges for researchers, Murphy said.
“Incarcerated people are a vulnerable population, and there are special protections for them in terms of approvals, study protocols and research protocols, which is appropriate,” Murphy said. “Also, there is distrust in that population. It is difficult to get incarcerated people to participate in research. Both the protections and the distrust come out of what we know is a very unfortunate history of taking advantage of incarcerated people for unethical research. That history is there, and that has an impact in a lot of different ways.”
Buy-in is also needed from prison medical staff, who have limited time and resources.
“It is also difficult for the researchers to get the approvals needed to enter the prisons,” Murphy said. “In some instances, it is done right, and prisons and jails can be very receptive.”
As a result, reliable, empirical data on diabetes management or diabetes outcomes among incarcerated people are scarce; guidelines for management in correctional settings are infrequently updated.
“The degree of evidence is really we have no evidence,” Murphy said. “It is our best guess.”
The COVID-19 pandemic added yet another layer of complexity to the research issue, when many services deemed “nonessential” were stopped, Reagan said.
“We planned to do a study, we had the results and planned on doing another inside the prison, and then COVID-19 hit,” Reagan said. “We are trying to get back on our feet now.”
Reagan said more research is needed, as the health of incarcerated people should matter as much as any other patient managing a chronic disease.
“We have a large, vulnerable, ethnic population, with mental health issues like cognitive impairment,” Reagan said. “This is the exact population we should be conducting research with. We must relax some of these restrictions for people trying to conduct research to find ways to help people getting out of prison or jail. Most will be released to the community. By not helping them, by not providing them with the skills and knowledge that they need, we are adding to health disparities these communities are already facing.”
For more information:
Elizabeth Murphy, MD, DPhil, can be reached at firstname.lastname@example.org.
Louise Reagan, PhD, APRN, ANP-BC, FAANP, can be reached at email@example.com.