HIV and Chronic Mental Illness PHASE, Canadian Psychological Association and Health Canada

1. HIV and Chronic Mental IllnessPHASE, Canadian Psychological Associationand Health Canada Module Developed by Lynda J. Phillips, Ph.D., C.Psych. Division of Clinical Psychology, Department of Psychiatry, University of Alberta Hospital, Edmonton, Alberta

2. HIV and Chronic Mental Illness (CMI) • Chronic mental illness usually predates HIV diagnosis (though first-time psychosis/mania may mean HIV brain disease) • Major depressive disorder • Schizophrenia • Bipolar disorder • Severe personality disorder

3. Myths about Peoplewith CMI • They don’t contribute to society. • They don’t care about their lives. • They’re either asexual or have uncontrollable sexual urges. • They have few or meaningless relationships. • They can’t learn new information or change their behaviours.

4. Impact of Myths on People with CMI • shame • isolation • sense that people are afraid of you • lack of trust in self, others • lack of positive, caring social support

5. Double Whammy (or more!) Stigma of Chronic Mental Illness PLUS Stigma of HIV and maybe substance use problems and other difficulties too

6. People with CMI are at high risk for HIV(higher than the general population). • Unsafe sex or drug practices may occur, due to: • Low self-esteem • Parasuicidal acting-out • Fear of rejection • Poor judgement or impaired cognitive functioning • Impulsivity • Financial problems • Transitory or tumultuous relationships • Lack of skills or knowledge about safer sex and clean needle use • Sexual victimization by others • Use of substances (which may be an attempt to self-medicate CMI symptoms and may impair judgment)

7. What’s the HIV rate among the chronically mentally ill? • Among homeless adults (at least one third are mentally ill), HIV rates range from 5 to 20%. • Homeless adults infected with either TB or HIV, 80% are unaware of their condition. • Reports of HIV incidence rates range from 6 to 7% for in-patients See: Cournos et al. (1994); Zolopa et al. (1994); Kalichman et al. (1994)

8. Risky business can happen for those with CMI, just as it can across all populations in society. From a sample of mentally ill patients, the following took place in the past year: • Had sex with a partner known for less than a day 10% • Were pressured into unwanted sex 15% • Had sex in exchange for drugs, money or a place to stay 13% • Had sex after using alcohol or drugs 20% • Were receptive partner in anal intercourse 3% • Had sex with partner who used injection drugs 7%

9. Sex Among Mentally IllMale In-patientsIt’s Happening. • Men with multiple sexual partners 42% • Average number of female partners for sexually active men 13 • Average use of condoms during intercourse 18% See: Welch et al. (1991)

10. Sex Among Mentally Ill Female In-patients • Women having sex with more than one partner 19% • Average use of condoms during intercourse episodes 12% • Average number of partners for women 3 See: Welch et al. (1991)

11. High-risk Situations Encountered by a Sample of (CMI) Canadian Patients High-risk situations reported % in the Past year 1. Have been sexually active 51.7 2. Had sex for money, drugs, or a place to stay 6.7 3. Have been treated for sexually transmitted disease 5.4 4. Had sex with someone you knew less than 24 hours 16.1 5. Would give in to partner’s desire not to use condom 33.3 6. Had sex during or soon after using drugs or alcohol 22.5 7. Had been a recipient in anal sex 5.4 8. Had sex with someone you knew who used injection drugs 4.1 9. Had been tested for HIV 25.0 10. Had sex with more than one sexual partner 17.4 Adapted from Chuang and Atkinson (1996).

12. Alcohol and drugs add to the mix. • Studies have documented rates of multiple substance use (cocaine, alcohol, marijuana) up to 98% (often used to self-medicate CMI symptoms). • Second diagnoses of substance abuse occurs for about 45% of patients with serious mental illnesses. See: Cournos et al. (1996) Hanson et al. (1992) Clinical Psychology Review, Special HIV Edition (1997)

13. For one sample of mentally ill in-patients... • Alcohol use last year 55% • Marijuana use last year 15% • Crack cocaine last year 8% • Illicit drug (pills) 8% • Injected drugs 5% See: Cournos et al. (1991)

14. Gaps in Traditional Services • Most providers of services to people with CMI have little experience or training in working with HIV+ individuals. • Most providers of services to PWHAs aren’t well prepared to work with people with CMI.

15. The Challenge to the Clinician • We may feel unskilled in particular areas: mental illness, substance abuse, HIV infection. • We are not skilled in assessing risk behaviour. • We are not prepared to talk about sex or sexuality. • This population is stigmatized, marginalized, and sometimes jaded. • People with CMI may distrust of “the system.”

16. Clients might be tough to work with because... • They don’t take their medications (medical and psychiatric) and don’t show up for therapy. • There are recurrent crises. • They may be violent or assaultive. • They don’t seem to make much progress. • Family members or guardians may have to be involved in treatment decisions.

17. It’s tough when... • Clients may be “burned out” on the social services and medical systems. • Clients are too disorganized to access mental health, medical or social service systems. • Clients’ lack of skills with interpersonal relationships complicate the negotiation of safer sex behaviours.

18. Hassles in the System • In-patient staff may not be comfortable or equipped to deal with complex medical issues. • Other patients and perhaps staff may be fearful of HIV – a review of safety procedures is necessary. • Staff may need training to deliver health promotion material about HIV. • There is little time for in-service activities on the ward. • The system is not very flexible; services in the community are usually available only from 9 to 5 and not necessarily accessible where and when patients are in need.

19. Roles for Psychologists • Assessment • Education/prevention • Psychotherapy • Staff consultation and support • Referral to other resources • Preparation of written information (educational materials) for patients

20. Assessment Q. Are psychiatric symptoms due to relapse of pre-existing mental illness (schizophrenia, bipolar disorder), to effects of HIV, or to effects of some other co-morbid issue (e.g., dementia, head injury, a neurological condition)? A. Answer this by doing a comprehensive assessment, obtaining collateral information from family, friends and caregivers.

21. Other Factors to Assess... • HIV meds, CMI meds • Adherence with meds • current • obstacles • Substance use • Sexual practices • Knowledge about HIV • Use of community resources • Need for neuropsychological assessment to further investigate co-morbidity issues (see next slide)

22. Refer for Neuropsychological Assessment to Assess for Co-morbidity Issues Related to Neurological Functioning: • Prenatal/perinatal complications • Severe childhood illnesses • History of developmental learning problems • Head injuries • Neurological conditions or disorders • Hepatic dysfunction due to medication regimen • Alcohol and drug use • Psychoactive medications (Percodan, Benzodiazapines) Please see PHASE module “How The Brain can be Affected by HIV-infection: A Neuropsychological Primer” for more information and for guidelines as to when to refer a patient for neuropsychological assessment.

23. Education and Prevention • Tailor to the person’s individual strengths and deficits • Use peers as trainers - small groups or individual sessions - variety of modalities - brief messages repeated often - stickers in washrooms, pamphlets or flyers on wards

24. Psychological Interventions • Assertiveness training • Communication skills • Safer-sex education • Substance abuse treatment • using safely • harm reduction • abstinence • Adherence promotion • Exploration of sexual orientation issues/concerns

25. Consultation to Staff, Programs • Staff issues – burnout, homophobia, etc. • Programs need to be flexible, adaptive, accessible, and close to consumers. • Programs need to involve consumers in planning. • Programs need to acknowledge sexuality, sexual diversity and drug use.

26. Referral to Other Resources • Basic needs first – housing, food, medical and legal services (sometimes HIV is the least of a person’s problems) • Occupational therapy, life skills, support groups • HIV organizations • Canadian Mental Health Association local chapter / Canadian Psychiatric Association

27. Some Background about Chronic Mental Illness

28. What is it Like to be Chronically Mentally Ill? May involve: • feelings of fear and confusion • confused sense of self • feelings of being out of control • tendency to attribute special meaning to events • ideas of reference

29. Mental illness can be characterized by... • Loose associations (mania/psychosis) • Hypersensitivity to criticism (Axis II - avoidant personality disorder) • Despair and loss of energy (depression) • Decreased capacity for insight (schizophrenia)

30. How should I deal with someone who is mentally ill? • Be respectful, talk to adults as adults. • Be calm, clear and direct in communication. • Be as consistent and predictable as you can. • Set clear limits, rules and expectations. • Keep a respectful distance.

31. What else? • Accept the person as ill. • Attribute the symptoms to the illness. • Don’t take the symptoms of illness personally. • Maintain a positive attitude, even during failure.

32. Anything more? • Allow the ill person to be unable to do things and, yet maintain his or her dignity. • Notice and praise any positive steps or behaviours. • Offer frequent praise, and, separately, specific criticism. • Focus on current functioning and achieving the best current life.

33. Specifics: Handling Hallucinations • Someone may be hallucinating if they: • talk to themselves, as if responding to others • laugh suddenly for no apparent reason • appear distracted or preoccupied • appear to see something that you can’t see.

34. Hallucinations: What’s Helpful • Therapists can: • ask if the person just heard something, and if so, what • determine how the client is feeling • discuss ways of coping to feel safe, calm and in control, especially if the hallucination contains violent content • discuss the possibility that the experience is a symptom • Remind person of limits on behaviour (no screaming).

35. What’s Not Helpful • It’s not helpful to: • act shocked or alarmed by experience • tell the person the experience is not real or minimize/dismiss it • enter into lengthy discussions about the content of the hallucination or why someone might be saying the things he/she is hearing.

36. Strategies for Clients • Talk to a therapist or someone else. • Increase antipsychotic medications. • Tell the voices to leave them alone. • Ignore the voices, smells, tastes and sensations. • Focus on a task or activity (e.g., listening to loud music).

37. Confusion about what’s real Overstimulation – external/internal Difficulty concentrating Preoccupation with internal world Fear Be simple and straightforward. Limit input; don’t focus discussion. Be brief, repeat and summarize. Get attention first before discussing. Stay calm. How to communicate when there’s...

38. Agitation Fluctuating emotions Fluctuating plans Little empathy for others Withdrawal Violence Recognize agitation; allow person an exit. Don’t take it personally. Stick to one plan. Recognize this as a symptom. Initiate conversation. Stay calm, diffuse anger, ensure safety, use restraint as a very last resort. How to communicate when there’s...

39. What About Delusions? Delusions are bizarre, unreal, false impressions and beliefs that can include delusions of grandeur, control, persecution, influence, somatic sensations and infidelity. • Do not question or discuss the details of delusional symptoms in any depth. • Do not try to argue a person out of a delusion; it won’t work. • Listen neutrally, calmly and respectfully. • Respond to any non-delusional remarks. • Explicitly express your desire to change the subject.

40. Take my drugs? I’ve heard this one before!! Adherence to HIV medication is critical in order to: • prevent development of drug resistance • suppress viral replication • maintain health. BUT… studies of adherence indicate that HALF of participants skip some doses of antiretrovirals. See: Bialer et al. (1997)

41. I skipped my HIV medications today because of*: • simple forgetfulness • change in daily routine • too busy with other things • away from home • “I want to die” (suicidality) • slept in • paranoia (that they are poison) • side effects of the drugs * (sample from general population)

42. Role of Pharmacological Rx • Meds used before client was HIV+ may affect client differently: HIV affects the CNS. • Some psychotropics interact negatively with HIV meds. • Consider HIV meds and their mental health consequences (see O’Connor, M. (1997), pp. 329-336). • Some HIV meds interact negatively with psychotropics. • Collaboration with psychiatry is important.

43. Getting the Meds in There • Consult with and/or involve the pharmacist. • Listen carefully about concerns and fears. • Do not minimize the patient’s discomfort. • Provide education tailored to the patient’s learning level and style. • Use the medication of choice where possible; however, sometimes drug interactions or side effects will mean using or switching to a second or third choice. • Create a system using simple strategies such as weekly pill boxes, blister packs or beepers. • Be supportive yet firm. • Check patient’s understanding (don’t assume it).

44. Case Studies on the Following Five Slides: Questions for Discussion 1. What more do you want to know? 2. What are the client’s needs? 3. What are the staff’s needs? 4. What interventions would help? 5. Would referrals be helpful? Where would you refer to?

45. PAM • Age 32, HIV-positive, bipolar disorder, borderline intelligence • Lives in group home • Sleeping and eating very little, impatient and agitated, high energy level • Told staff member she’s having sex with another resident; staff member suspects Pam’s partner not aware of her HIV status

46. SUE • Age 30, HIV+, history of psychotic episodes • Has had to trade sex for shelter and food; lives in inner city, sometimes homeless • Assaulted, taken to ER, further tests show PCP • As a psychologist with the hospital’s HIV clinic, you’re asked by the physician in ER to see her as an out-patient for “help with coping skills”

47. MICHAEL • Age 27; diagnosed with schizophrenia at age 18 • Diagnosed HIV-positive five years ago • Lives in group home, takes Risperidone and Prozac • Poor problem-solving skills and poor judgement • Sexually active; impulsive, unprotected sex • Confused about his sexual identity

48. JIM • Age 26, has schizophrenia, also HIV-positive • Recent acute episode after HIV-positive gay partner died from lymphoma • Now stable on medications, wants to go to group home for people with mental illnesses – he’d be first PWHIV there • Several group-home staff are homophobic • Group-home director wants your help

49. TOM • Age 23, has paranoid schizophrenia, lives with parents • Recently hospitalized with acute episode • Met woman in hospital age 36, with history of IVDU • Told his mother that he had sex several times with the woman • Told mother he can trust no one and that the doctor and nurses are plotting against him