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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.
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Psychological Features of Illness and Recovery Patterns in HIV DiseasePHASE, Canadian Psychological Association and Health CanadaModule Developed by Paul C. Veilleux, Ph.D. UHRESS - Centre Hospitalier de l’Université de MontréalMontreal, Quebec
The 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. Aids 1
CD4 > 500 Lymphadenopathy Recurrent vaginal candidiasis Common HIV-Related Opportunistic Infections 2
CD4: 200 - 500 Pneumoccocal pneumonia Pulmonary tuberculosis Herpes Oral candidiasis Common HIV-Related Opportunistic Infections 3
CD4: 200 - 500 Cervical neoplasia Anemia Kaposi’s sarcoma Non-Hodgkin’s lymphoma Common HIV-Related Opportunistic Infections 4
CD4 < 200 Pneumocystis carinii pneumonia (PCP) Mycobacterium avium intracellulare (MAI) Cytomegalovirus (CMV- retinitis) Lymphoma Common HIV-Related Opportunistic Infections 5
CD4 < 200 Toxoplasmosis Progressive multifocal leukoencephalopathy (PML) AIDS dementia complex Common HIV-Related Opportunistic Infections 6
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 Neuropsychological and Neuropsychiatric Effects of Medications Used in HIV Disease d4T (antiretroviral) 7
Ddc (antiretroviral) Headache, confusion, impaired concentration, somnolence, asthenia, depression, seizures, peripheral neuropathy Nervousness, anxiety, confusion, seizures, insomnia, peripheral neuropathy, pain Insomnia, mania Neuropsychological and Neuropsychiatric Effects of Medications Used in HIV Disease ddI (antiretroviral) 3TC (antiretrovirale) 8
Acyclovir (herpes encephalitis) Visual hallucinations, depersonalization, tearfulness, confusion, hyperesthesia, thought insertion, insomnia Delirium, peripheral neuropathy, diplopia Paresthesias, seizures, headache, irritability, hallucinations, confusion Neuropsychological and Neuropsychiatric Effects of Medications Used in HIV Disease Amphotericin B (cryptococcosis) Foscarnet (Cytomegalovirus) 9
B-lactam antibiotics (infections) Confusion, paranoia, hallucinations, mania, coma Depression, loss of appetite, insomnia, apathy Psychosis, somnolence, depression, confusion, tremor, vertigo, paresis, seizures, dysathria Neuropsychological and Neuropsychiatric Effects of Medications Used in HIV Disease Co-trimoxazole (PCP) Cycloserine (tuberculosis) 10
Interferon (Kaposi’s sarcoma) Depression, weakness, headache, myalgias, confusion Confusion, anxiety, lability, hallucinations etc. Neuropsychological and Neuropsychiatric Effects of Medications Used in HIV Disease Pentamidine (PCP) etc. 11
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. Events That May Trigger Crises 12
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 immortality Losses and Transformations Facing Persons Living with HIV/Aids 13
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 Major Stressors Facing Persons Living with HIV/Aids 14
Loss of control over one's life Loss of one’s home Apprehension of social isolation as death approaches Major Stressors Facing Persons Living with HIV/Aids 15
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 Managing Chronic Health Problems 16
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 Managing Chronic Health Problems 17
Processes related to getting well again (new antiretroviral therapy) Multiples losses Deinvestment Reinvestment or deinvestment ? Ambivalence 18
Reinvestment? Intimate relationships Social involvement Desire to have a child Return to work Return to school etc. For how long ??? 19
Returning to Work: Positive Consequences • Quality of life • Self-confidence • Personal and social self-actualization • Economic status • Independence 20
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 working 21
Consult and inform yourself about the consequences: Medical Financial Social Psychological Make an enlightened decision. Returning to Work: Psychological and Social Consequences 22
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. Grief Issues in Therapy 23
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. Grief Issues in Therapy 24
Actualize the loss through talking and rituals. Encourage the expression of feelings. Assist in developing skills for living without the deceased. Facilitate emotional removal. Facilitating the Grief Process 25
Encourage specific times for grieving. Normalize grieving behaviour. Allow for individual and cultural differences in grieving. Identify non-productive coping and pathological grieving. Facilitating the Grief Process 26
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. Case Study: Instructions for Participants 27
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? Case Study: Questions 28
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. Marie 29
John 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. John 30
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. Claire 31
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. Jacques 32
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 ? Peter 33
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. Exercise: Daily Medication Schedule 34
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? Exercise: Daily Medication ScheduleQuestions for Small Group Discussion 35
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 ? Exercise: Daily Medication ScheduleQuestions for Small Group Discussion 36
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 Exercise: Daily Medication Schedule: Example 1 37
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 Exercise: Daily Medication Schedule: Example 2 38
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 Exercise: Daily Medication Schedule: Example 3 39
Coping with life as a person with AIDS Managing chronic health problems Time issues and life issues Preparing to die Psychosocial Issues Around AIDS and Late HIV-Disease 40
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. The Psychologist’s Role in Medical Treatment 41
Teach relaxation and pain management techniques. Educate clients and significant others about neuropsychological complications and strategies for managing them. The Psychologist’s Role in Medical Treatment 42
Client-centred Team approach Flexibility (acknowledge ignorance) System negotiation Constant interplay between management and meaning Psychotherapeutic Framework 43
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. Maintaining Boundaries and Avoiding Burnout 44
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. Maintaining Boundaries and Avoiding Burnout 45