Living with HIV/AIDS: Exploring Impact in Physcial, Psychological and Economic Domain

Living with HIV/AIDS: Exploring Impact in Physcial, Psychological and Economic Domain

Training and education of medicaid workers and importance linking clients with appropriate mental health services and medicaid-related programs

Charlene Vetter, Ph.D. student

Counseling, School Educational Psychology

Baldy Hall

New York State University at Buffalo

Jim Donnelly, Assistant Professor

Counseling, School Educational Psychology

Baldy Hall

New York State University at Buffalo

Sally Speed, Sally Speed, Director, NYS Medicaid Training Institute

Award: 34963

Project: 1044887

Task: 2

Appointment period: January 1, 2005 to June 30, 2005

Award: 31177

Project: 1037112

Task: 2

Appointment period: August 23, 2004 to December 31, 2004

Summary

This reference manual represents a summary of basic information, terminology, and

informational resources relevant to HIV/AIDS-related issues that affect the quality of life for HIV-positive individuals and their caretakers. The tables included in this manual are

organized into four main categories: Table 1) HIV/AIDS-related symptoms, illnesses, and treatment side effects (basic definitions of commonly used terms, physical challenges of living with HIV/AIDS); Table 2) HIV/AIDS-related psychological issues (psychological challenges associated with living with HIV/AIDS); Table 3) HIV/AIDS-related psychosocial issues (social challenges associated with living with HIV/AIDS );

Table 4) HIV/AIDS-related economic issues. (financial issues associated with HIV/AIDS, medical insurance coverage, Medicaid-related programs designed to assist HIV-positive individuals).

The primary focus of Table 3 (pertaining to HIV-related psychosocial issues) is societal stigma, discriminatory behavior, and illness disclosure issues. Several researchers have found that these factors may affect quality of life in many areas. These include accessing services, making decisions related to disclosing HIV-positive status, and making choices related to employment (e.g. disclosure of illness at work, asking employers for accommodations). Unlike many other types of disease, stigma and discrimination add to burden of coping with the health-related challenges of being HIV-positive. In helping to assist HIV-positive individuals and their caretakers, it is important for Medicaid workers to have awareness of issues such as stigma and discrimination that

may become barriers to clients receiving needed medical, mental health, social, and financial services.

This reference manual is not intended to be an exhaustive representation of physical, psychological, psychosocial, and economic issues related to HIV/AIDS, but is intended to serve as an introduction to important topics in each of these categories. This manual includes references for further reading in each topic area and a list of internet resources/website site addresses to obtain more in-depth, detailed information.

HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 9 of 20

Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
HIV/AIDS-Related Symptoms, Illnesses, Side Effects
AIDS (Acquired Immune Deficiency Syndrome / A late stage of HIV disease. According to the Centers for Disease Control and Prevention (CDC, www.cdc.gov/hiv/dhap), a person with HIV infection has AIDS when he or she:
1) has a CD4 cell count (a way to measure the strength of the immune system) that falls below 200. A normal CD4 cell count is 500 or higher. OR 2) develops any of the specific, serious conditions - also called AIDS-defining illnesses - that are linked with HIV infection IMPORTANT NOTE: Once a diagnosis of AIDS is assigned, a patient remains classified as having AIDS even if CD4 cell count shows fluctuations above 200. (www.cdc.gov/hiv/dhap) / Impact on functioning will be determined by specific diagnoses of AIDS-defining illnesses (please see definition below) / Training and education of Medicaid Workers:
Need for workers to be knowledgeable of criteria necessary for an AIDS diagnosis, and awareness that AIDS-related illnesses are highly variable across patients.
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
AIDS-defining illness / A condition (e.g., Pneumocystis carinii pneumonia, toxoplasmosis, Kaposi's sarcoma) that is included in the Center for Disease Control and Prevention's CDC definition of AIDS. (www.cdc.gov/hiv/dhap) / Impact on functioning will be determined by specific diagnoses of AIDS-defining illnesses / Training and education of Medicaid Workers:
Need for workers to be knowledgeable of criteria necessary for an AIDS diagnosis, and awareness that AIDS-related illnesses are highly variable across patients.
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
AIDS related complex (ARC)
(Early Symptomatic HIV infection) / 1. A group of common complications found in early stage HIV infection. They include progressive generalized lymphadenopathy (PGL), recurrent fever, unexplained weight loss, swollen lymph nodes, diarrhea, herpes, hairy leukoplakia, fungus infection of the mouth and throat and/or the presence of HIV antibodies.
2. Symptoms that appear to be related to infection by HIV. They include an unexplained, chronic deficiency of white blood cells (leukopenia) or a poorly functioning lymphatic system with swelling of the lymph nodes (lymphadenopathy) lasting for more than three months without the opportunistic infections required for a diagnosis of AIDS. (www.aegis.com) / Fever, diarrhea, and infections may cause weakness, fatigue, physical pain and discomfort / Training and education of Medicaid Workers: Need for workers to be aware of ways in which early-stage HIV infection is manifested and awareness that daily functioning may be impacted soon after infection.
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
AIDS dementia complex
(HIV-associated dementia or HAD / A degenerative neurological condition attributed to HIV infection, characterized by a group of clinical presentations including loss of coordination, mood swings, loss of inhibitions, and widespread cognitive dysfunction. It is the most common central nervous system complication of HIV infection. Characteristically, it manifests itself after the patient develops major opportunistic infections or AIDS-related cancers. However, patients can also have this syndrome before these major systemic complications occur. The cause of ADC has not been determined exactly, but it may result from HIV infection of cells or inflammatory reactions to such infections
(www.aegis.com) / HAD may affect cognitive functions such as memory,
ability to concentrate, may cause mood swings, and may affect physical coordination / Training and education of Medicaid Workers: Need for workers to be aware of how HAD may impact abilities/capacities to function in the workplace
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
opportunistic infection (oi) / An illness caused by a microorganism that usually does not cause disease in persons with healthy immune systems, but which may cause serious illness when the immune system is suppressed. Common OI in HIV positive people include Pneumocystis carinii pneumonia (PCP), Mycobacterium avium complex (MAC) and cytomegalovirus (CMV) infection.
(www.aegis.com) / Impact on daily functioning depends on the specific opportunistic infection diagnosed (e.g. PCP causes symptoms such as weakness,
respiratory distress). / Training and education of Medicaid Workers: Need for workers to be aware that
1) HIV does not cause illness per se, but rather weakens the immune system, making the individual vulnerable to illnesses such as OIs.
2) The presence of an OI is a likely indicator that a patient has progressed to an AIDS diagnosis.
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
AIDS-related cancers / Several cancers are more common or more aggressive in persons living with HIV. These malignancies include certain types of immune system cancers known as lymphomas, Kaposi's Sarcoma, and anogenital cancers that primarily affect the anus and the cervix. HIV, or the immune suppression it induces, appears to play a role in the development of these cancers.
(www.aegis.com) / Impact on daily functioning depends on the specific cancer diagnosis, and on the side effects associated with the treatment approach (e.g. nausea is a possible side effect of chemotherapy). / Training and education of Medicaid Workers: Need for workers to be aware that
HIV-positive individuals are 1)more like to be diagnosed with cancers that effect the immune system than the general population
2) Symptoms of cancer and side effects of treatment can greatly effect an individual’s
ability to function on a daily basis.
AIDS Wasting Syndrome / The involuntary weight loss of 10 percent of baseline body weight plus either chronic diarrhea (two loose stools per day for more than 30 days) or chronic weakness and documented fever (for 30 days or more, intermittent or constant) in the absence of a concurrent illness other than HIV infection.
(www.aigis.com) / Daily functioning may be impacted by weakness, fatigue due to the body inability to fully absorb/utilized nutrients. / Training and education of Medicaid Workers: Need for workers to be aware that wasting syndrome can affect
all areas of functioning,
(e.g. cognitive, physical).
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
Side Effects of Highly Active Anti-Retroviral Therapy (HAART)
NOTE: HAART treatment
is the most common treatment approach and involves taking a minimum of three anti-HIV medications. / Possible side effects of HAART include:
fever, nausea, diarrhea, fatigue,liver problems, diabetes, fat maldistribution (lipodystrophy syndrome), high cholesterol,decreased bone density, increased bleeding in patients with hemophilia. (www.aegis.com) / The side effects of HAART can cause serious impairment to an individual’s ability to perform daily activities such as shopping, meal preparation, taking public transportation.
Some side effects (such as nausea, diarrhea) make it difficult to be away from home for any length of time. / Training and education of Medicaid Workers: Need for workers to be aware that
1)treatment side effects can affect all areas of functioning,
(e.g. cognitive, physical).
2) Side effects are highly variable across individuals and may range from mild to severe.

HIV/AIDS Reference Manual Table 1: HIV/AIDS-Related Symptoms, Illnesses, Treatment Side Effects Page 9 of 20

Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
Psychological Issues Related to HIV/AIDS
Other articles relevant to this topic:
Miles (1997)
Demi et al (1997)
Demi et al (1998)
Sherbourne et al (2000) / Psychiatric disorders such as depression and substance abuse issues commonly occur in HIV-positive individuals (see Bing, 2001,Kemppainen, 2001). / Disorders such as depression can affect motivation to adhere to treatment regiments as well as impair ability to function on a daily basis (e.g. desire/energy to perform self-care activities
may be affected). / Training and education of Medicaid Workers: Need for workers to be aware that
for many HIV-positive individuals, mental health concerns and psychological disorders add to the burden of living with the disease. Workers also need to be aware of the importance of linking clients with appropriate mental health services.
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
Anxiety related to unpredictability of HIV-related illnesses/treatment outcomes
Other articles relevant to this topic:
Brashers et al (1999)
Selwyn & Arnold (1998)
Rabkin & Fernando (1997)
Crandall & Coleman (1992) / HIV-related illness is non-linear and individuals can unpredictably experience symptom-free and symptomatic periods. People who respond well to treatment may experience longer periods of relative good health and their progression to an AIDS diagnosis will likely be slower. Even during healthier periods, however, the uncertainty of how long the effects of the treatment will last may cause distress for these individuals in many areas of their lives. This may present obstacles to making important life decisions about personal and professional future goals such as whether to have a family, pursue education, or attempt to become employed. See Bogart et al (2000) and Rabkin et al (2000). / Impact of anxiety on daily functioning will vary depending on whether symptoms of anxiety are mild, moderate, or severe. / Training and education of Medicaid Workers: Need for workers to be aware that the unpredictability of HIV-related illness and treatment outcomes presents a challenge to service providers to determine what kinds of services are needed to assist individuals in coping with multiple stressors and making major life decisions.

HIV/AIDS Reference Manual Table 3: HIV/AIDS-Related Psychosocial Issues Page 12 of 20

Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
Psychosocial Issues related to HIV/AIDS
Social Stigmatization/Disclosure of HIV-Positive Status
Other articles relevant to this topic:
Herek et al (2002)
Chandra et al (2003) / An emotional challenge of living with HIV that does not appear to be associated with other types of chronic illness is the social stigma surrounding the disease. The stigma may partially be a consequence of the epidemic’s early association
with homosexuality. In their article about sources of societal stigmatization of HIV/AIDS, Herek and Glunt (1988) suggest that it arises from two main factors: the identification of the illness as serious and life-threatening, and the association of the disease with groups that were already socially stigmatized prior to the epidemic, specifically homosexual men and intravenous drug users. / Fear of being discriminated against can impact many areas of life, including influencing decisions related to disclosing illness to family, friends, employers, and service providers. / Training and education of Medicaid Workers: Need for workers to be aware that
the experience of societal stigma/discriminatory behavior can have a negative affect on life satisfaction by hindering access to social support, medical care, and social services for HIV-positive individuals and their families/caretakers. It is important that workers provide support, advocacy, and guidance related to issues of disclosure for clients and their caretakers.
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
Factors that May Affect Quality of Life for HIV-Positive Individuals
and their Family Members/Caregivers / Heckman (2003) devised and tested a Chronic Illness Quality of Life Model and found that HIV-related discrimination appeared to have a negative effect on life satisfaction by
hindering access to social support, medical care, and social services. Heckman also suggests that an important goal of intervention efforts to should be to link HIV-positive individuals and their families with sources of informational, emotional, and instrumental support to increase future optimism and identify adaptive coping strategies. / Disclosing HIV-positive status may sometimes lead to discriminatory behavior and loss of social, emotional, and financial support from family and/or friends. HIV-related discrimination may become a barrier to accessing needed services. / Training and education of Medicaid Workers: Need for workers to be aware of the importance of assessing how an individual’s life has been impacted by disclosing positive status (in some cases also disclosing sexual orientation and/or substance abuse issues).
If support from the individual’s social network has been lost ,and/or if discrimination is preventing access to services, this will increase the need for workers to link clients to sources of financial, medical ,and social support, and act as advocates on behalf of clients.
Topic / Explanation / Impact on Daily Functioning / Training/Practice Recommendations
Factors that May Affect Quality of Life for HIV-Positive Individuals
and their Family Members/Caregivers
Other articles relevant to this topic:
DeMatteo et al (2002)
Selwyn & Forstein (2003)
Carlisle (2000) / Feelings of stigma may contribute to the experience of depression and increase the emotional burden of caretakers. Service professionals need to focus on decreasing stigma experienced by family members and offer guidance around issues of disclosure of HIV status (Demi et al, 1997). / Feelings of stigma may lead to increased anxiety and reluctance to request assistance and access needed support services. / Training and education of Medicaid Workers: Need for workers to be aware of the importance of being sensitive to possible feelings of stigma experienced by family members/caretakers and the necessity of helping them obtain support by linking them to community resources.