Psychological Features of Illness and Recovery Patterns in HIV Disease PHASE, Canadian Psychological Association and Health Canada Module Developed by

Psychological Features of Illness and Recovery

Patterns in HIV Disease PHASE, Canadian Psychological Association and Health Canada

Module Developed by Paul C. Veilleux, Ph.D. UHRESS - Centre Hospitalier de l’Université de Montréal

Montreal, Quebec

AidsThe fourth stage of HIV infection, diagnosed when serious opportunistic disease or a CD4 cell count of less than 200 occurs, is commonly referred to as AIDS. Treatment at this stage includes both continuation or enhancement of antiretroviral therapy and the prophylaxis, diagnosis and treatment of specific opportunistic diseases as they occur.

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Common HIV-Related Opportunistic Infections

• CD4 > 500

– Lymphadenopathy– Recurrent vaginal

candidiasis

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• CD4: 200 - 500

– Pneumoccocal pneumonia

– Pulmonary tuberculosis

– Herpes

– Oral candidiasis4


• CD4: 200 - 500

– Cervical neoplasia

– Anemia

– Kaposi’s sarcoma

– Non-Hodgkin’s lymphoma

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• CD4 < 200

– Pneumocystis carinii pneumonia (PCP)

– Mycobacterium avium intracellulare (MAI)

– Cytomegalovirus (CMV- retinitis)

– Lymphoma6


• CD4 < 200– Toxoplasmosis

– Progressive multifocal leukoencephalopathy (PML)

– AIDS dementia complex

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Neuropsychological and Neuropsychiatric Effects of Medications Used in HIV Disease

• AZT (antiretroviral) • Headache, feeling ill, asthenia, insomnia, unusually vivid dreams, restlessness, severe agitation, mania, auditory hallucinations, confusion

• Headache, asthenia, feeling ill, confusion, depression, seizures, excitability, anxiety, mania, early awakening, insomnia

• d4T (antiretroviral)

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• Ddc (antiretroviral) • Headache, confusion, impaired concentration, somnolence, asthenia, depression, seizures, peripheral neuropathy

• Nervousness, anxiety, confusion, seizures, insomnia, peripheral neuropathy, pain

• Insomnia, mania

• ddI (antiretroviral)

• 3TC (antiretrovirale)

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• Acyclovir (herpes encephalitis)

• Visual hallucinations, depersonalization, tearfulness, confusion, hyperesthesia, thought insertion, insomnia

• Delirium, peripheral neuropathy, diplopia

• Paresthesias, seizures, headache, irritability, hallucinations, confusion

• Amphotericin B (cryptococcosis)

• Foscarnet (Cytomegalovirus)

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• B-lactam antibiotics (infections)

• Confusion, paranoia, hallucinations, mania, coma

• Depression, loss of appetite, insomnia, apathy

• Psychosis, somnolence, depression, confusion, tremor, vertigo, paresis, seizures, dysathria

• Co-trimoxazole (PCP)

• Cycloserine (tuberculosis)

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• Interferon (Kaposi’s sarcoma)

• Depression, weakness, headache, myalgias, confusion

• Confusion, anxiety, lability, hallucinations

• etc.

• Pentamidine (PCP)

• etc.

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Events That May Trigger Crises

• HIV testing• HIV diagnosis• Fear of disclosure• Viral load & T4 count• Concerns about

negotiating safer sex and/or needle use

• First opportunistic infection

• First hospitalization• Treatment failure• Leaving one’s job• Moving into a hospice• Confronting losses• Anticipating death• etc.

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Losses and Transformations Facing Persons Living with HIV/Aids

• Physical capacities• Mental faculties• Body image, dignity• Income, Job, status• Independence, Ano-

nymity• Mobility, Recreation

• Family, friends• Love and intimacy• Sense of self and one’s

role in the world• Anticipation, Control

over the future• Sense of invulnerabil-

ity and immortality14

Major Stressors Facing Persons Living with HIV/Aids

• Job loss, financial insecurity and medical expenses

• Informing others about the diagnosis

• Fear of loss of body functions and/or of physical disability

• Fear of loss of mental functions and autonomy

• Changes in body image and self-image

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Major Stressors Facing Persons Living with HIV/Aids

• Loss of control over one's life

• Loss of one’s home• Apprehension of social isolation as

death approaches

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Managing Chronic Health Problems

• Assessing anxiety, depression, neuropsychological symptoms, and the need for intervention

• Organizing support services

• Educating and organizing family, friends, and partners about one's changing needs

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Managing Chronic Health Problems

• Learning to set flexible goals to accommodate changes in energy and health status

• Weighing medical treatment needs against quality of life issues

• Dealing with anticipatory grief in self and others

• Determining what is worth the effort and what is not

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Multiples losses

Deinvestment Ambivalence

Processes related to getting well again (new antiretroviral therapy)

Reinvestment or

deinvestment

?

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Reinvestment?

• Intimate relationships• Social involvement• Desire to have a child• Return to work • Return to school• etc.• For how long ???

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Returning to Work: Positive Consequences

• Quality of life• Self-confidence• Personal and social self-actualization• Economic status• Independence

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Returning to Work: Negative Consequences

• Anxiety• Medication (cost, side effects, regimen)• Difficulty finding a place in the job market• Confronting the social network• Lost of benefits (insurance, long-term

disability plan, etc.)• Uncertainty about how long one will stay

working22

Returning to Work: Psychological and Social

ConsequencesConsult and inform yourself about the consequences:– Medical– Financial– Social– Psychological

Make an enlightened decision. 23

Grief Issues in Therapy

• You can't fix grief – what’s lost is lost.

• Allow depression and sadness – don't try to take them away.

• Sit with the client and witness the tough feelings.

• It's hard to be helpless – both for the client and for the therapist.

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Grief Issues in Therapy

• Just listening is often the best intervention – sometimes you don't have to do or say anything.

• Continually give clients permission and encouragement to grieve.

• Clients feel safest to grieve when they know their grief can be expressed and contained.

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Facilitating the Grief Process

• Actualize the loss through talking and rituals.

• Encourage the expression of feelings.

• Assist in developing skills for living without the deceased.

• Facilitate emotional removal.

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Facilitating the Grief Process

• Encourage specific times for grieving.

• Normalize grieving behaviour.

• Allow for individual and cultural differences in grieving.

• Identify non-productive coping and pathological grieving.

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Case Study: Instructions for Participants

Form discussion groups of about five participants. Choose a case example that you wish to discuss and answer the four questions shown. Name a spokesperson who will give a summary of your responses or ideas. You will have approximately 30 minutes to discuss and then you will share your ideas with the rest of the class.

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Case Study: Questions

Read the case examples, choose one case, and answer the following questions:

1. What are the feelings and emotions of the patient or client?

2. What are your feelings and emotions regarding this person and situation?

3. What are the needs of the patient or client?

4. What solutions or strategies would you suggest?

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Marie

Marie has known that she is HIV+ for seven years. She is hospitalized for the first time with a PCP. The physician also discovered a lymphoma for which she will receive chemotherapy. She is exhausted because she had kept on working until this hospitalization. She is a single mother of a 5-year-old son named Antoine. He is HIV-. Marie's mother is taking care of him during the hospitalization. Marie has never told Antoine about her seropositivity or illness. She is anxious to tell him about her health problems and doesn't know how to do it. She is afraid that she might have to quit her job. She is also afraid of dying. She feels in a panic. You are called on to help her.

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JohnJohn is a young IDU. He is a prostitute. He has experienced periods of incarceration because of his work. He is well known by the emergency room staff. Some members of the team have pity for him while others are hostile toward him. He is presently hospitalized for a skin problem related to his drug use. He has also a PCP. He should be hospitalized for two weeks. After a few days, he receives his welfare cheque and asks for a few hours’ leave. The staff is concerned because this type of client frequently does not come back. The staff requires your help in this situation.

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Claire

Claire is a 30-year-old black woman from the Caribbean. Her husband died two years ago from AIDS. She was expecting herself to die in the year following her husband’s death since her CD4 count was below 50 and she had had several opportunistic infections. She spent almost all her savings and is now receiving welfare. With the new treatment, her CD4 count is up to 200 and she has an undetectable viral load. She is afraid of going on with her life (maybe meeting someone else, having a baby, getting a job) because she feels that it would be a betrayal of her husband. She is asking for help.

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Jacques

Jacques is André's lover. André has been at the AIDS stage for two years; Jacques is HIV-negative. They have been living together for the last 12 years. Jacques, a high school teacher, is responsible for the housekeeping and André's medical visits, etc. André is blind as a result of CMV retinitis. Jacques expected André to die in the last year but with the new treatment André is still alive. He comes to you because he is exhausted from taking care of André, and he feels guilty when he thinks that André's death would be an easy solution to his problem. He ask for help.

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Peter

You have been following Peter in psychotherapy for almost two years. In the past six months, he has been receiving treatment for CMV retinitis. He has lost his sight in his right eye and his left eye is affected. On a cloudy day, he comes to your office. You notice that his vision is worse because he has to feel with his hands for where objects are. Peter is proud and strongly values. With tears in his eyes, he says he would prefer death to blindness. How can you help him ?

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Exercise: Daily Medication Schedule

• Choose a sample daily medication schedule that a person with HIV may be taking (examples follows). Using yourself and your typical daily schedule (at work, home, or here today), map out your day’s medication regimen, integrating it with meals and other daily activities. 35

Exercise: Daily Medication Schedule

Questions for Small Group Discussion

• What are some possible challenges to following your medication schedule?

• What are your emotional reactions to this schedule?

• How likely would you be to follow your schedule as instructed?

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Exercise: Daily Medication ScheduleQuestions for Small Group Discussion

• How would you follow your schedule if you:– were visually impaired ?– were depressed ?– were homeless ?– didn’t want anyone to know you were HIV+ ?– were cognitively impaired ?

• What could help you to better follow your medication schedule ?

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Exercise: Daily Medication Schedule: Example 1

AZT: three pills (3X100mg) two times a day taken with food

3TC: one pill (150 mg) twice a day, can be taken with food

Crixivan: two pills (2X400mg) every 8 hours around the clock, with water, skim milk, juice, coffee, or tea; one hour before or two hours after a meal; drink a minimum of 1.5 litres (preferably water) throughout the day, store at room temperature, keep dry

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Nelfinavir: five pills (5x250mg) twice a day, with a meal

Saquinavir: five pills (5X200mg) twice a day, with a meal

ddI: two pills (2x100mg) twice a day, 30 minutes before or 2 hours after meals

d4T: one pill (40mg) twice a day; can be taken with food

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Indinavir: two pills (2x400mg) twice a day with a meal

Ritonavir: 5ml; 400mg twice a day; tastes awful

ddI: two pills (2x100mg) twice a day; must be taken one hour before or after the indinavir and the ritonavir

Hydoxyurie: one pill (500mg) twice a day; can be taken with food

Septra: one pill (5mg) once a day, without food if possible

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Psychosocial Issues Around AIDS and Late HIV-Disease

• Coping with life as a person with AIDS

• Managing chronic health problems

• Time issues and life issues

• Preparing to die

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The Psychologist’s Role in Medical Treatment

• Explore how symptoms, diagnostic procedures, medications and treatment procedures affect daily living and one’s sense of self.

• Assist the client in formulating questions for his or her physician.

• Offer emotional support and suggest ways of establishing a sense of control whenever possible.

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The Psychologist’s Role in Medical Treatment

• Teach relaxation and pain management techniques.

• Educate clients and significant others about neuropsychological complications and strategies for managing them.

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Psychotherapeutic Framework

• Client-centred

• Team approach

• Flexibility (acknowledge ignorance)

• System negotiation

• Constant interplay between management and meaning

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Maintaining Boundaries and Avoiding Burnout

• Tell clients how often, where and when you will see them. Tell them early on in the therapeutic relationship.

• Continually review the new commitments you make in light of how many HIV-infected clients you are seeing at various stages of the disease.

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Maintaining Boundaries and Avoiding Burnout

• Anticipate the emerging needs of clients and assess services before those needs become desperate.

• Know the resources in your community and how to use them.

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Documents

Psychological Features of Illness and Recovery Patterns in HIV Disease PHASE, Canadian Psychological Association and Health Canada Module Developed by