Disengagement From Care: Perspectives of Individuals With Serious Mental Illness and of Service Providers

Of the 3,504 individuals who were not engaged in services, 2,361 met the following additional eligibility criteria for qualitative interviews: age 18–65 and a history of criminal justice involvement or mandated outpatient mental health services. These populations are among the most vulnerable and underserved in community mental health systems (18,19). They also encompass young adults between 18 and 24 years old, another vulnerable population.

Each month during the recruitment period, the managed behavioral health organization provided the research team with the names of 50 to 100 eligible individuals. Medicaid claims data were reviewed to identify providers who had served each eligible individual. Research staff contacted the provider to request that a provider staff member present the project to the individual at the next contact. Providers were willing to attempt to contact the individual and present the study for 971 cases and successfully contacted 126 individuals. Providers presented the study to these 126 individuals during the 16-month recruitment period, and 77 granted permission to be contacted. Of these, 56 provided written informed consent after study procedures were fully explained and completed interviews. Two interviewers from the research team attended each interview, which was designed to last 60 to 90 minutes and was conducted at a convenient location in the community or on inpatient units for individuals who were hospitalized when recruited.

The research team developed a qualitative interview guide in weekly meetings during a three-month planning period. Qualitative questions prompted individuals with serious mental illness to describe interactions with providers, experiences accessing services in criminal justice and mental health settings, common reasons for failure to engage in or remain engaged in services, and strategies for use by providers to increase engagement. The schizophrenia outcomes modules (20) were used to collect self-reported demographic data and descriptive information regarding housing, legal problems, diagnoses, and mental health treatment.

Research staff also recruited providers working at agencies serving individuals with serious mental illness who had disengaged from services. The staff obtained the names of the agencies from the Care Monitoring Initiative and contacted agency directors or supervisors to request permission to interview staff. Research staff purposively recruited providers with various clinical roles, including intensive case managers, social workers, therapists, and clinical supervisors. Twenty-one agencies were contacted, and 25 providers from 14 agencies provided consent and completed interviews. Twenty-one (84%) providers were female, and four (16%) were male. The sample included three (12%) bachelor’s-level case managers and 22 (88%) individuals with master’s-level or doctoral training. With the exception of one interview conducted at an agency, provider interviews were conducted over the phone and designed to last 60 minutes. Providers were asked to describe their experiences working with individuals with serious mental illness who frequently discontinue services, common reasons for failure to engage in or remain engaged in services, and strategies to increase engagement.

The reason most commonly reported by individuals for disengaging was that services were not relevant to their needs (N=17, 30%). Some individuals linked this observation to symptoms: “Some programs, I just don’t find them suitable to my needs. . . . The activities are irrelevant for my disorder.” Most spoke more globally about irrelevant programming. One client stated, “They referred me to a program at [facility name], and I've been there already. All they do is just sit around, talk, and draw. I didn’t go because I didn’t want to do the same thing.” Another reflected, “I just got aggravated, because it didn't seem like the issues that I was having, anyone was really addressing them.”

Individuals also identified themes related to relationships with treating clinicians as reasons for disengagement. Sixteen individuals (29%) described experiences with providers whom they perceived as critical or negative: “Some doctors can be really the finger pointer, [doing nothing] other than giving you orders. I’d rather have suggestions, so when you start pointing your finger and telling me [what to do], I lose interest quick in people like that, so I just never went.” Another individual reported, “One therapist used to say things, like, criticize me. I didn’t like that. She used to criticize, say that I’m not trying to do the right thing. She wasn’t giving me enough credit at all about nothing I did.”

Eleven individuals (20%) noted lack of continuity with providers as a reason for disengagement. One individual reported, “Every time I get close to somebody, they just up and disappear. So I said . . . ‘We're going to start talking about my problems, and then what? Two months later she’s going to be gone?’ That's when I said it isn’t worth it.” Another noted, “It’s very hard to develop a rapport with a doctor, because you don’t know how long they’re going to be there.” Twelve (21%) individuals insisted they had no mental health problems requiring treatment, and only two (4%) mentioned stigma as a reason for disengagement. Individuals did not identify themselves as mental health patients and felt neither the burden of seeking care nor the negative consequences of being labeled.

Whereas individuals with serious mental illness described disengagement in terms of service needs and relationship issues, provider reports reflected attitudes regarding individuals’ difficulties coping with an illness. Nineteen providers (76%) described stigma as an impediment to engaging in services. One said, “The stigma from the community about having a mental illness . . . nobody wants to be thought of as crazy. It can keep you from being employed, which can keep you from feeding yourself, so that’s number one is the stigma.” Providers (N=17, 68%) also described lack of awareness of illness. “If they have no insight, there is really no helping them at this point, and if I can’t really help them, I would have to refer them [to another provider],” according to one provider. Another noted, “Then you have your clients who really don’t want to come. They just can’t be bothered. They don’t believe they have a mental illness, and they’re axis II, so after a while they just drop out and we close their cases.” In addition to identifying stigma and lack of awareness, which are patient-level issues, providers (N=7, 28%) also identified the system-level issue of a lack of continuity with clinicians as a reason individuals disengage from services.

Providers (N=16, 64%) commonly identified family and cultural attitudes as barriers to accepting services. One provider noted, “A lot of times it’s really not the client that has issues [with receiving services], it’s the family members. Maybe it’s the mother, or a sister, they feel ‘Why is the client needing these services?’ They don’t see the reason why.” Providers (N=21, 84%) also described transportation barriers (N=21, 84%) and changes in living arrangements or unstable housing (N=10, 40%) as commonly contributing to individuals’ disengagement from services.

Fifteen individuals (27%) described providers who foster engagement as caring and noncritical. One individual said, “You want to know what makes me stay. Well, for me, it was the constant caring, the constant knowledge that came out of these people. It was like I find that if people are sincere and they really want to help you and they try, you can see that.” Individuals (N=12, 21%) also endorsed a recovery approach. “They’re not just listening to me,” said one. “They’re trying to help me to become a better functional person. I feel that they’re serious in their desire to help me do the things I want to do.”

Providers (N=15, 60%) also reported that clinicians with caring, noncritical attitudes were more likely to engage individuals. “It has a lot to do with having respect for the client and treating our clients like a person and not just somebody with a mental illness,” said one provider. Another noted, “First it’s listening to the patient. You can determine what is going to help them, and people like people to listen to them. One thing that helps me keep people engaged is just listening to what people have to say.” Providers were more likely to describe approaches that include psychoeducation (N=13, 52%) and client choice (N=12, 48%). One provider noted, “The way to engage a client is to ask them ‘What it is you think is your problem, or what problem or what issue do you think you have at this moment that I can work with you on?’”

Both individuals (N=13, 23%) and providers (N=17, 68%) endorsed the importance of transportation assistance, and providers emphasized flexibility of scheduling, both in time and place (N=17, 68%). A majority of providers (N=23, 92%) endorsed working with families to improve engagement, although none of the individuals endorsed family interventions. Individuals noted the importance of help with activities outside treatment, including assistance structuring free time to avoid maladaptive behaviors such as substance use (N=12, 21%), and job training or assistance with entitlements (N=10, 18%).