Socio-demographic survey results

Demographics and characteristics of participants (n = 16) are described in Table 2. Seventeen individuals were screened for eligibility and determined to be eligible, with 16 individuals completing the interview and one loss to follow-up. As shown, a majority (n = 15) were male, identified as African American or Black (n = 13), had training or education beyond high school (n = 9) and were unemployed (n = 11). Incarceration history, including release from prison or jail, time since community reentry, and duration of incarceration, is described in Table 3.

Table 2 Participant socio-demographics (N = 16) Full size table

Table 3 Characteristics of participants’ most recent incarceration (N = 16) Full size table

Characteristics of health and healthcare utilization, as described in Table 4, reveal that a majority (n = 13) of participants were enrolled in insurance at the time of interviews and over half (n = 10) were on at least one daily medication at the time of their release.

Table 4 Participants’ health and healthcare characteristics Full size table

Qualitative findings

Overview

In order to provide a sense of the range and variation of findings, we use the term “most” to describe experiences in more than half of participants, “several” to indicate an experience or observation in 25 to 50% of participants, and “few” to describe observations that contrast with the majority and are seen in only one or two cases (Pandhi, Bowers, & Chen, 2007). Below we present our results in three sections. First, we describe healthcare experiences during incarceration and how these experiences impacted health and care-seeking post incarceration. Next, we describe barriers and facilitators to accessing care post-incarceration. Finally, we present participants’ advice for post-incarceration primary care services.

Overall, there was considerable variation in how participants navigated the healthcare system, what challenges they encountered and how they made decisions about when to seek care. For most participants, the first episode of care they sought following incarceration was for an acute medical issue. However, the importance of prevention, routine care or chronic disease management were also described as important by most participants. As one participant, released from jail 2 months prior, explained:

“I was just out there and never went to the doctor, and I had Hep C and didn’t even know it, you know. So that really right there makes me say hey, you got to constantly go, cause you got Hep C and you didn’t even know you had it. You know, so I got to go. Every six months I’m gonna go just to get a checkup and make sure I’m fine.”

Healthcare during incarceration and impact on care-seeking

Most participants perceived a compounding negative effect on their health from the poor healthcare they received during incarceration and the experience of incarceration itself. As illustrated in Table 5, perceived problems with healthcare in correctional facilities included lack of adequate treatment, delayed care, uncaring demeanor, wrong medications given, misdiagnosis, and lack of treatment unless emergent.

Table 5 Perceptions of problems with healthcare in correctional facilities Full size table

Most participants felt that incarceration had a negative impact on their health, with half of individuals describing adverse effects on mental health. One individual who had been incarcerated multiple times, having most recently spent over 2 years in prison, explained:

“The greatest health epidemic in prison is mental. You know, because you destroy a person’s spirit, you destroy their sense of worth, you know, like I’m not a man like you, I’m not a woman like you now because I’m locked up.”

A few individuals felt that incarceration had no impact on their health and a few described incarceration as preserving health or even improving some aspects of health:

“So I was healthier and my body had a chance to mend without the drugs, without the cigarettes, without the uh, the demands of rent and food and a job and a family or a woman, you know.”

Most interviewees said that their negative healthcare experience during incarceration did not hinder their future care seeking and several said it actually encouraged them to seek care following incarceration. An individual who spent 5 years in prison explained:

“After you do a little time or whatever, it’s not the best healthcare system in the world. Of course a lot of complaints and things of that nature are overlooked. So you really, I mean you kind of say to yourself, oh I get to see a real doctor, or I get to go to a real facility and so those were my main two things. To see somebody more professional in my opinion, and to just acquire healthcare.”

Nearly half of people mentioned the need for more resources about care options as a part of pre-release planning or the potential utility of promoting the availability of services to people prior to their release from prison or jail.

Barriers and facilitators to healthcare system navigation following incarceration

There was variation in how participants navigated the healthcare system after incarceration and what challenges were encountered. Commonly mentioned challenges and barriers were related to insurance, cost and transportation. Important facilitators included the role of community organizations and word of mouth.

While most participants did not have a regular place of care prior to incarceration, at the time of participation in interviews, most participants had active health insurance and a regular place of care. However, a few had never received primary care services outside of incarceration, and those who were receiving care still faced barriers and lapses in care at times. These barriers and lapses were primarily due to insurance or financial concerns and lack of transportation. While several people had no trouble enrolling in insurance, lapses in insurance were common, with nearly half of participants experiencing a gap in insurance coverage and several describing lack of insurance as a reason for not seeking care. Insurance challenges mentioned by participants included difficulty maintaining enrollment, employment related insurance gaps, lack of insurance and underinsurance. Without insurance, participants generally expressed lapses in care due to financial concerns. One individual who established care 7 years after his release from jail shared:

“I let my asthma get worse and worse and worse because when I think of doctor…I think copay. I think I just don’t have it. I don’t have the copay.”

Several people mentioned the important role of community organizations in navigating the healthcare system through providing support for insurance enrollment and/or finding a clinic and doctor. Additionally, most mentioned word of mouth as an important aspect of healthcare navigation. Participants described using word of mouth to assist them in figuring out a wide range of navigation factors including what doctor to go to, hospitals to seek or avoid, treatment approaches, eligibility for services and existence of helpful services. One person who spent a year and a half in the House of Corrections described the importance of word of mouth during incarceration that ultimately helped him seek treatment for Hepatitis C once he was released:

“So basically, a lot of information you get is like from people that’s in there among people that you talk about, you know, you talk around, and it’s like people just, other inmates just help other inmates, you know, you got older inmates, you got younger inmates, and everybody’s just trying to help each other out.”

Others described post-incarceration word of mouth as an important factor in seeking treatment. A 41-year-old man released from jail 2 months prior who was actively seeking mental health care explained:

“So I check around with other people that, a lot of people that I deal with or that I associate with have had the same problems I’m having. You know what I’m saying, from the medication side effects and things of that nature. So I take their advice and see if the places they’re going to is really going to help me like it’s helping them.”

Word of mouth was also described as helpful in finding a doctor or clinic, and was powerful both years after information was shared as well as more immediately:

“I remember one of my friends, like, from 2011, she always spoke about her [doctor]…So I remembered that name, looked her up, and I went to the urgent care and she told me to come to her office, and I went. It was just really word of mouth I guess.”

“One day I was with my buddy and he’s like ‘I’m going to urgent care and gonna walk in,’ and I just happened to go in with him, and was like, you got insurance card why don’t you try this.”

Advice for transitional care

When participants were asked to describe the ideal clinic for people coming out of incarceration, they commonly talked about such a clinic providing additional social services, addressing mental health, and fostering a friendly and welcoming environment. Table 6 displays participants’ specific advice for such a transitional clinic with illustrative quotes.

Table 6 Participants’ advice for an ideal clinic Full size table

Most participants mentioned the importance of providing additional social services including support for employment, transportation, housing, and food. Having multiple services available on-site was described as ideal, otherwise it was recommended to provide referrals or informational brochures. Several individuals mentioned the importance of prioritizing mental health as part of an initial assessment and having mental health services available, primarily counseling or therapy.

Friendly, respectful service from clinic staff and creation of a non-judgmental, empathetic environment were also highlighted as important aspects of care. Examples of good care experiences that were described included taking concerns seriously, listening, providing thorough care, providing appropriate referrals, personalizing care and perceptions of staff as friendly and caring. Generally, individuals did not feel that their history of incarceration impacted the care they received at a clinic, and most expressed that they never had concerns about how their doctor would treat them. Several interviewees emphasized an overall perception of providers as caring and passionate about helping people. A 51-year-old man who had recently been incarcerated in prison for over 3 years shared:

“Yeah, they open armed because I guess, a lot of them do love their profession. And most importantly, they love helping others, and they want to see people healthy. So they usually come with the best possible care, and information.”

However, a few individuals did express concerns about feeling out of place or stigmatized. One individual, a 61-year-old who had spent 11 months in jail, describes feeling out of place in a clinical setting:

“It’s just when you go to doctors and dentists and you know, business places or important places, you feel like you don’t fit if you’re not clean and nice and decent you know, so…You feel out of place, everybody else is nice and clean and fresh and laughing and optimism and happy and joyful and you down and out and smell yourself and god damn I gotta get outta here. And you feel like everybody’s talking about you and looking at you.”

A 31-year-old who had spent over a year in prison and had never accessed healthcare outside of incarceration described concerns about stigma and what doctors might think after long lapses in care:

“That’s [discrimination] always in the back of your head because people think, um, everybody who goes to prison is a bad person, but that’s really not the case, because we are human beings, and human beings make mistakes.”