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

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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

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Co-Occurring DisordersCo-Occurring DisordersCo-Occurring DisordersCo-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).

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).

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Background & Background & SignificanceSignificance


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.

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.

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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

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Data CollectionData CollectionData CollectionData Collection 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

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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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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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


Frequency Percent

CMSP_County

Uninsured

3 15

Medi-Cal (Medicaid) 16 80

Other 1 5

Tota l 20 100

INSURANCE COVERAGE

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Social & Structural Barriers

Negotiating & Navigating an Arduous

Healthcare SystemUnstable Shelter

Intricacies with Interpersonal

Relationships with Healthcare Providers

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Intricacies with Interpersonal Relationships with Healthcare

Providers

Neglecting One’s Lived World

Trust

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Neglecting One’s Lived-Neglecting One’s Lived-WorldWorld

Neglecting One’s Lived-Neglecting One’s Lived-WorldWorld

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

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Neglecting One’s Lived-WorldNeglecting One’s Lived-WorldNeglecting One’s Lived-WorldNeglecting 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

2020


Intricacies with Interpersonal Relationships with Healthcare

Providers

Neglecting One’s Lived World

Trust

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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

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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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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

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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

dying. dying. -Cate, 52-Cate, 52

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Unstable Shelter

Unkempt & Precarious Housing

Wet Housing

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Unkempt & Precarious Unkempt & Precarious HousingHousing


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.

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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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Unstable Shelter

Unkempt & Precarious Housing

Wet Housing

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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

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Negotiating & Navigating an Arduous

Healthcare System

Unstable Shelter

Intricacies with Relationships with

Healthcare Providers

Maneuvering the Maze

Neglecting One’s Lived

World

Reaching the Limits Unkempt &

Precarious Housing

Wet Housing

Trust

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RecommendationsBreaking the Barriers


Improving Interpersonal Relationships Improving Interpersonal Relationships with Healthcare Providerswith Healthcare Providers Understanding background differences.Understanding background differences.

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.

Improving Interpersonal Relationships Improving Interpersonal Relationships with Healthcare Providerswith Healthcare Providers Understanding background differences.Understanding background differences.

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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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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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.

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LimitationsLimitations

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Future StudiesFuture StudiesFuture StudiesFuture Studies

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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

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