1 Challenges & Struggles Challenges & Struggles : : Lived Experiences of Individuals Lived Experiences of Individuals with Co-Occurring Disorders 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
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1 Challenges & Struggles : Lived Experiences of Individuals with Co-Occurring Disorders Anna Villena, PhD, RN, FNP, BC SAMHSA/ANA Fellow University of.
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Challenges & StrugglesChallenges & Struggles::Lived Experiences of Lived Experiences of Individuals with Co-Individuals with Co-Occurring DisordersOccurring Disorders
Challenges & StrugglesChallenges & Struggles::Lived Experiences of Lived Experiences of Individuals with Co-Individuals with Co-Occurring DisordersOccurring Disorders
Anna Villena, PhD, RN, FNP, BCSAMHSA/ANA Fellow
University of California San FranciscoThe Ohio State University College of Nursing
Anna Villena, PhD, RN, FNP, BCSAMHSA/ANA Fellow
University of California San FranciscoThe Ohio State University College of Nursing
This research was partially funded by the Substance Abuse Mental Health/ANA Fellowship & The UCSF Health Fellowship
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).
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).
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.
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.
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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.
Current Studies & GapsCurrent Studies & Gaps
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PurposePurposePurposePurpose
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.
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.
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Research QuestionResearch QuestionResearch QuestionResearch 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?
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?
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AimsAimsAimsAims
To understand, illustrate and describe:To understand, illustrate and describe: the social and structural barriers that the social and structural barriers that
individuals with COD encounter in individuals with COD encounter in regards to their healthcare. regards to their healthcare.
how individuals with COD manage their how individuals with COD manage their multiple illnessesmultiple illnesses..
To understand, illustrate and describe:To understand, illustrate and describe: the social and structural barriers that the social and structural barriers that
individuals with COD encounter in individuals with COD encounter in regards to their healthcare. regards to their healthcare.
how individuals with COD manage their how individuals with COD manage their multiple illnessesmultiple illnesses..
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Research DesignResearch DesignResearch DesignResearch Design
Interpretive PhenomenologyInterpretive Phenomenology Data Collection
NarrativesNarratives Field Notes Field Notes Participant ObservationParticipant Observation Demographic QuestionnaireDemographic Questionnaire
Interpretive PhenomenologyInterpretive Phenomenology Data Collection
NarrativesNarratives Field Notes Field Notes Participant ObservationParticipant Observation Demographic QuestionnaireDemographic Questionnaire
were recruited from were recruited from community centers and community centers and supportive housing sites.supportive housing sites.
Participants were Participants were interviewed twiceinterviewed twice
All interviews were tape All interviews were tape recordedrecorded
Data Management: use of Data Management: use of Atlas TIAtlas TI
Twenty (n=20) participants Twenty (n=20) participants were recruited from were recruited from community centers and community centers and supportive housing sites.supportive housing sites.
Participants were Participants were interviewed twiceinterviewed twice
All interviews were tape All interviews were tape recordedrecorded
Data Management: use of Data Management: use of Atlas TIAtlas TI
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AnalysesAnalysesAnalysesAnalyses
Case AnalysisCase Analysis Thematic AnalysesThematic Analyses Paradigm Case AnalysesParadigm Case Analyses ExemplarsExemplars
Case AnalysisCase Analysis Thematic AnalysesThematic Analyses Paradigm Case AnalysesParadigm Case Analyses ExemplarsExemplars
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Descriptive StatisticsDescriptive Statistics
Frequency Percent
African American 13 65
American Indian 1 5
Caucasian 5 25
Latino 1 5
Tota l 20 100
N Minimum Maximum Mean
AGE
(years)
20 39 64 51.25
AGE
ETHNICITY
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Descriptive StatisticsDescriptive Statistics
Frequency Percent
Female 9 45
Male 11 55
Tota l 20 100
Frequency Percent
Bipolar 3 15
Depression 13 65
Schizoaffective 2 10
Schizophrenia 2 10
Tota l 20 100
GENDER
PSYCHIATRIC DIAGNOSES
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Descriptive StatisticsDescriptive Statistics
Frequency Percent
Diabetes 5 25
Degenerative Joint
Disease
5 25
Hypertension 10 50
Hepatitis C 4 20
Obesity 5 25
More than one medical
conditions
12 60
More than two medical
conditions
8 40
More than three medical
conditions
7 35
MEDICAL DIAGNOSES
15
Descriptive StatisticsDescriptive Statistics
Frequency Percent
CMSP_County
Uninsured
3 15
Medi-Cal (Medicaid) 16 80
Other 1 5
Tota l 20 100
INSURANCE COVERAGE
1616
Social & Structural Barriers
Negotiating & Navigating an Arduous
Healthcare SystemUnstable Shelter
Intricacies with Interpersonal
Relationships with Healthcare Providers
1717
Social & Structural Barriers
Intricacies with Interpersonal Relationships with Healthcare
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.
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
2020
Social & Structural Barriers
Intricacies with Interpersonal Relationships with Healthcare
Providers
Neglecting One’s Lived World
Trust
2121
TrustTrustTrustTrust
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
2222
Healthcare is becoming a commodity that is
becoming scarcer and scarcer for the poor
Peter, 54
Healthcare is becoming a commodity that is
becoming scarcer and scarcer for the poor
Peter, 54
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Social & Structural Barriers
Negotiating & Navigating an Arduous Healthcare System
Maneuvering the Maze Reaching the Limits
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Maneuvering the MazeManeuvering the MazeManeuvering the MazeManeuvering 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
2525
Social & Structural Barriers
Negotiating & Navigating an Arduous Healthcare System
Maneuvering the Maze Reaching the Limits
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Reaching the LimitsReaching 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
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They had rats in [the hotel]. They had rats in [the hotel]. They had bed bugs. They had They had bed bugs. They had
roaches. And every day roaches. And every day somebody was pissing in the somebody was pissing in the hallway or falling out, having hallway or falling out, having convulsions, or being sick or convulsions, or being sick or
dying. dying. -Cate, 52-Cate, 52
They had rats in [the hotel]. They had rats in [the hotel]. They had bed bugs. They had They had bed bugs. They had
roaches. And every day roaches. And every day somebody was pissing in the somebody was pissing in the hallway or falling out, having hallway or falling out, having convulsions, or being sick or convulsions, or being sick or
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.
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
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Social & Structural Barriers
Unstable Shelter
Unkempt & Precarious Housing
Wet Housing
3232
Wet HousingWet HousingWet HousingWet 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
In addition to understanding the medical In addition to understanding the medical complexities, we also need to acknowledge the complexities, we also need to acknowledge the individual’s socio-cultural-historical experiences.individual’s socio-cultural-historical experiences.
Need for continuity of care.Need for continuity of care.
In addition to understanding the medical In addition to understanding the medical complexities, we also need to acknowledge the complexities, we also need to acknowledge the individual’s socio-cultural-historical experiences.individual’s socio-cultural-historical experiences.
Need for continuity of care.Need for continuity of care.
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RecommendationsBreaking the Barriers
RecommendationsBreaking the Barriers
Negotiating and Navigating an Negotiating and Navigating an Arduous Healthcare SystemArduous Healthcare System Utilization of Pharmacy Assistance Utilization of Pharmacy Assistance
Program (PAP).Program (PAP). Flexible range of clinic drop-in hours.Flexible range of clinic drop-in hours. Peer support: utilize family members or Peer support: utilize family members or
consumers to help maneuver consumers to help maneuver institutional bureaucracies.institutional bureaucracies.
Negotiating and Navigating an Negotiating and Navigating an Arduous Healthcare SystemArduous Healthcare System Utilization of Pharmacy Assistance Utilization of Pharmacy Assistance
Program (PAP).Program (PAP). Flexible range of clinic drop-in hours.Flexible range of clinic drop-in hours. Peer support: utilize family members or Peer support: utilize family members or
consumers to help maneuver consumers to help maneuver institutional bureaucracies.institutional bureaucracies.
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RecommendationsBreaking the Barriers
RecommendationsBreaking the Barriers
Providing Clean & Safe HousingProviding Clean & Safe Housing Need for stricter housing regulations.Need for stricter housing regulations. Cogent, workable, & sustainable housing Cogent, workable, & sustainable housing
accommodations need to be developed. accommodations need to be developed. Matching individuals’ level of recovery to Matching individuals’ level of recovery to
future housing sites.future housing sites. Close collaboration between healthcare Close collaboration between healthcare
providers is needed to help patients living at providers is needed to help patients living at SROs manage their physical & mental SROs manage their physical & mental conditions.conditions.
Providing Clean & Safe HousingProviding Clean & Safe Housing Need for stricter housing regulations.Need for stricter housing regulations. Cogent, workable, & sustainable housing Cogent, workable, & sustainable housing
accommodations need to be developed. accommodations need to be developed. Matching individuals’ level of recovery to Matching individuals’ level of recovery to
future housing sites.future housing sites. Close collaboration between healthcare Close collaboration between healthcare
providers is needed to help patients living at providers is needed to help patients living at SROs manage their physical & mental SROs manage their physical & mental conditions.conditions.
AcknowledgmentsAcknowledgmentsAcknowledgmentsAcknowledgments Dr. Catherine A. CheslaDr. Catherine A. Chesla Dr. Faye Gary Dr. Faye Gary SAMHSA/ANA Minority FellowshipSAMHSA/ANA Minority Fellowship UCSF Graduate Dean’s Health Fellowship UCSF Graduate Dean’s Health Fellowship
AwardAward UCSF Graduate Opportunity AwardUCSF Graduate Opportunity Award UCSF Alumni ScholarshipUCSF Alumni Scholarship Dr. Catherine Waters & Dr. Bethany PhoenixDr. Catherine Waters & Dr. Bethany Phoenix Dr. Robert Ratner & Rick CrispinoDr. Robert Ratner & Rick Crispino
Dr. Catherine A. CheslaDr. Catherine A. Chesla Dr. Faye Gary Dr. Faye Gary SAMHSA/ANA Minority FellowshipSAMHSA/ANA Minority Fellowship UCSF Graduate Dean’s Health Fellowship UCSF Graduate Dean’s Health Fellowship
AwardAward UCSF Graduate Opportunity AwardUCSF Graduate Opportunity Award UCSF Alumni ScholarshipUCSF Alumni Scholarship Dr. Catherine Waters & Dr. Bethany PhoenixDr. Catherine Waters & Dr. Bethany Phoenix Dr. Robert Ratner & Rick CrispinoDr. Robert Ratner & Rick Crispino