Challenges & Struggles : Lived Experiences of Individuals with Co-Occurring Disorders

1. Challenges & Struggles:Lived Experiences of Individuals with Co-Occurring Disorders Anna Villena, PhD, RN, FNP, BC SAMHSA/ANA Fellow University of California San Francisco The Ohio State University College of Nursing This research was partially funded by the Substance Abuse Mental Health/ANA Fellowship & The UCSF Health Fellowship

2. Co-Occurring Disorders • Co-occurring disorders (COD) of mental illness and substance abuse are highly insidious, transcending “differential types of psychiatric diagnosis, and drug of abuse, and are encountered regularly in psychiatric and medical emergency rooms, clinics and hospitals” (Chambers, 2007, p.4). • COD exists when at least one disorder of each type can be established independently of the other and is not simply a cluster of symptoms resulting from a single disorder (Co-Occurring Center for Excellence, 2003).

3. Background & Significance • Approximately 33.2 million adults age 18 and older have a serious mental illness or a substance use disorder in a given year. • Of these, 40.4 percent (13.4 million) have only a serious mental illness; • 47.4 percent (15.7 million) have only a substance use disorder; • 12.2 percent (4.0 million) have both serious mental illness and a substance use disorder. • 61 percent of those who have COD have not received treatment for either illness.

4. Background & Significance • Individuals with COD have higher rates of other chronic health problems (i.e. diabetes), multiple re-hospitalizations and over utilize emergent services. • Increased prevalence of cardiovascular disease, high blood pressure, diabetes, arthritis, digestive disorders, and asthma. • Higher rates of HIV and hepatitis C than those found in the general population. • Specific mental or substance-use diagnoses place individuals at higher risk for certain general medical conditions.

5. Current Studies & Gaps • Current studies examine COD and recovery issues, housing issues, and clinicians’ perspectives when working with this population. • Literature focuses on co-occurring disorders of HIV, mental illness, & substance abuse. • Dearth of literature that focuses on the impact for those with COD of having multiple physical health disorders.

6. Purpose The purpose of this hermeneutic interpretive study is to discover the meanings of health, health beliefs and practices and health management of individuals with co-occurring disorders of mental illness, substance abuse and chronic diseases.

7. Research Question How do individuals with co-occurring disorders of mental illness, substance abuse and chronic diseases (e.g., diabetes, hypertension and hepatitis C) perceive and manage their health?

8. Aims To understand, illustrate and describe: • the social and structural barriers that individuals with COD encounter in regards to their healthcare. • how individuals with COD manage their multiple illnesses.

9. Research Design • Interpretive Phenomenology • Data Collection • Narratives • Field Notes • Participant Observation • Demographic Questionnaire

10. Data Collection • Twenty (n=20) participants were recruited from community centers and supportive housing sites. • Participants were interviewed twice • All interviews were tape recorded • Data Management: use of Atlas TI

11. Analyses • Case Analysis • Thematic Analyses • Paradigm Case Analyses • Exemplars

12. Descriptive Statistics AGE ETHNICITY

13. Descriptive Statistics GENDER PSYCHIATRIC DIAGNOSES

14. Descriptive Statistics MEDICAL DIAGNOSES

15. Descriptive Statistics INSURANCE COVERAGE

16. Social & Structural Barriers Intricacies with Interpersonal Relationships with Healthcare Providers Negotiating & Navigating an Arduous Healthcare System Unstable Shelter

17. Social & Structural Barriers Intricacies with Interpersonal Relationships with Healthcare Providers Neglecting One’s Lived World Trust

18. Neglecting One’s Lived-World • A few days after my appointment, I noticed that my sugars were high in the morning when they shouldn’t have been. So then that’s when I realized, oh, this is N, and, not 70/30. I called and left a message on the doctor’s voice mail. She was on vacation, but I knew that she would pick it up Monday. And she called on Monday, and said, “Oh, yes, I did give you the wrong insulin.” She tried to correct her mistake by telling me to go back to the clinic that day and get another prescription. …But I did not want to pay again. That’s not the point. The point is you fix it. Now, I got two bottles of insulin that I don’t need, that it’s perfectly good insulin, and it would be nice if they would take it back and give me what I need so I won’t have to pay again. • -Sheila, 52

19. Neglecting One’s Lived-World • I told her I didn’t have the money to go to the clinic and that it would have to wait until my appointment on Saturday. You know, all that running around, trying to correct the doctor’s mistake, when I don’t have a car, and I'm on the bus, and it’s hard go to the pharmacy. It was her fault. It was also mine for not rechecking. I tried not to get upset. But it’s hard not to get upset. • -Sheila,52

20. Social & Structural Barriers Intricacies with Interpersonal Relationships with Healthcare Providers Neglecting One’s Lived World Trust

21. Trust • I got some therapy through interns at this program. They would only be there for eight months. I worked with them. And after getting a good feeling with this person, as far as him understanding where I'm at...all of a sudden his internship was over. I'm just getting comfortable, you know? I'm talking with this person. Things are coming out. And all of a sudden they have to leave. Somebody else is going to come in next week. I felt like I'm being abandoned. If I want to continue getting therapy at this particular place, I have to start over. I have to rehash or dig back stuff up that I worked with the last therapist. After eight months, that therapist [would leave]. • -Patrick, 45

22. Healthcare is becoming a commodity that is becoming scarcer and scarcer for the poor Peter, 54

23. Social & Structural Barriers Negotiating & Navigating an Arduous Healthcare System Maneuvering the Maze Reaching the Limits

24. Maneuvering the Maze • They said that I missed the appointment, and I couldn’t have my pills. I have to take pills for the cholesterol and heart. I have three medicines, plus I take iron. I went without for about almost a whole month. They told me I missed the appointment, and like what she did, she scheduled me a month later. And that irked me. It really pissed me off ‘cause I coulda died within that month. • -Paul, 64

25. Social & Structural Barriers Negotiating & Navigating an Arduous Healthcare System Maneuvering the Maze Reaching the Limits

26. Reaching the Limits • There’s only so much that Medicaid will pay for. You know, that’s a big issue at times. I am on eight medications per month. Medicaid will only pay for six. After that they have to get a TAR (treatment authorization request), which causes a delay in my medications. So there are times that I gotta make a decision, well, what can I hold off on for four days while the pharmacist gets a TAR for Medicaid to pay for this. • -Patrick, 45

27. They had rats in [the hotel]. They had bed bugs. They had roaches. And every day somebody was pissing in the hallway or falling out, having convulsions, or being sick or dying. -Cate, 52

28. Social & Structural Barriers Unstable Shelter Wet Housing Unkempt & Precarious Housing

29. Unkempt & Precarious Housing • I went and bought pesticides, foggers and everything myself to try to combat this problem. The bed bugs got in all my belongings. I ended up being moved into five different rooms. It was like torture...being bitten by bed bugs. And what that did was bring up memories of being abused physically and mentally during my childhood.

30. Unkempt & Precarious Housing • I’ve been looking for my other little piece of weapon. This is a piece of steel. (Rebar) I found it walking up to my sister’s house. And then I have a box cutter I used to use at work. -Lola, 63

31. Social & Structural Barriers Unstable Shelter Unkempt & Precarious Housing Wet Housing

32. Wet Housing • This past weekend you could smell crack all in the hallways. Can’t do anything about that. I'm just tired. I smell it, but what I do is I leave. I go out and get some air and just leave. And hopefully the smell will be gone by the time I get back. Sometimes I come to the realization that why, why would I want that [drugs]? And I’ll say no. And I’ll just leave. I’ll go somewhere else. -Sasha, 54

33. Social & Structural Barriers Intricacies with Relationships with Healthcare Providers Unstable Shelter Negotiating & Navigating an Arduous Healthcare System Neglecting One’s Lived World Trust Maneuvering the Maze Reaching the Limits Unkempt & Precarious Housing WetHousing

34. RecommendationsBreaking the Barriers • Improving Interpersonal Relationships with Healthcare Providers • Understanding background differences. • In addition to understanding the medical complexities, we also need to acknowledge the individual’s socio-cultural-historical experiences. • Need for continuity of care.

35. RecommendationsBreaking the Barriers • Negotiating and Navigating an Arduous Healthcare System • Utilization of Pharmacy Assistance Program (PAP). • Flexible range of clinic drop-in hours. • Peer support: utilize family members or consumers to help maneuver institutional bureaucracies.

36. RecommendationsBreaking the Barriers • Providing Clean & Safe Housing • Need for stricter housing regulations. • Cogent, workable, & sustainable housing accommodations need to be developed. • Matching individuals’ level of recovery to future housing sites. • Close collaboration between healthcare providers is needed to help patients living at SROs manage their physical & mental conditions.

37. Limitations

38. Future Studies

39. Acknowledgments • Dr. Catherine A. Chesla • Dr. Faye Gary • SAMHSA/ANA Minority Fellowship • UCSF Graduate Dean’s Health Fellowship Award • UCSF Graduate Opportunity Award • UCSF Alumni Scholarship • Dr. Catherine Waters & Dr. Bethany Phoenix • Dr. Robert Ratner & Rick Crispino