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Barbara Marín and Cynthia Gómez at the Center for AIDS Prevention Studies at UCSF and Karin Coyle and Doug Kirby at ETR Associates developed this questionnaire as part of an evaluation study. These questionnaires are available both in English and Spanish. Please read a description of the questionnaires. Instruments:

• Student health questionnaire
• Encuesta de salud estudiantil

Scoring: See scales. Reliability and/or validity: Marín BV, Coyle K, Gómez C, Carvajal S, Kirby D (2000). Older Boyfriends and Girlfriends Increase Risk of Sexual Initiation in Young Adolescents. Journal of Adolescent Health, 27, 409–418.

What are injection drug users (IDU) HIV prevention needs?

Are IDUs at risk?

Yes. Injecting drug use accounts for nearly one-third (36%) of cumulative AIDS cases in the US, and for 28% of the 42,156 new AIDS cases reported in 2000. These cases include injecting drug users (IDUs), their sexual partners and children born to them.¹ African Americans and Latinos are disproportionately affected by IDU-associated AIDS. In 2000, the proportion of IDU-associated AIDS cases was 26% for African Americans, 31% for Latinos and 19% for whites.¹ Women are also disproportionately affected. Overall, 62% of AIDS cases among women have been attributed to IDUs and sex with IDU partners, compared with 34% of cases among men.² IDUs are at even greater risk for other serious drug use-related illnesses, including hepatitis C and overdose. Injecting drug use accounts for 60% of hepatitis C infections in the US. Rates of hepatitis C infection among young IDUs are 4 to 100 times higher than rates of HIV infection. Drug overdose is a major cause of death among heroin users, even in areas with high rates of IDU HIV.⁵

What puts IDUs at risk?

Sharing injection equipment to either inject or split drugsincluding syringes, cookers, water and cottonis a high risk factor for IDUs.⁶ Sharing mainly occurs because there are not enough needles and syringes available or they are not affordable to IDUs. Unprotected sexual activity with an HIV+ partner is also a high risk factor for IDUs, especially male IDUs who have sex with men, women IDUs who trade sex for money and women with IDU partners.⁷ Risk varies depending on drug use; for example, speed (methamphetamines) increases sexual desire and has been shown to lead to unsafe sex.⁸ IDUs often struggle with multiple health risks due to social, economic and psychological factors. HIV prevention may not be their top concern since they face other more pressing daily challenges such as addiction, poverty, incarceration, homelessness, stigma, depression, mental illness and past trauma.⁹

What about drug treatment?

Quitting drug use through drug abuse treatment can be an effective HIV prevention intervention. However, only about 15% of IDU are currently in treatment, and there is no medical treatment for speed addiction. Increasing the amount of quality drug treatment alone is not enough. Drug dependence is a chronic, relapsing disease. Some drug users are unwilling to seek treatment and those who do often find there are no treatment services available or affordable. Also, most people who go through drug treatment relapse several times before quitting for good. Because of this, it is important to take a harm reduction approach to HIV prevention for IDUs.¹⁰ A harm reduction approach recognizes that some IDUs are unable or unwilling to stop using drugs; therefore, harm reduction helps IDUs in a nonjudgmental way to reduce negative consequences of drug use. This can be done through promoting safer use, managed use or quitting drug use. In the US, harm reduction methods include street outreach to active drug users, syringe exchange and pharmacy access to sterile syringes.¹¹ Internationally, harm reduction initiatives include safe injecting rooms and medical dispensing of illicit drugs.¹²

What can help?

Peers, such as recovering IDUs, can be effective in motivating behavior change. However, recovering IDUs used as peer educators need support to avoid relapse to drug use. IDUs are more likely to use condoms when members of their social network discuss general health concerns and condom use, and when they have broader financial support.¹³ Access to quality medical care and STD/HIV treatment can help promote safer behaviors. A study in Baltimore, MD, found that informal caregivers were more likely to promote prevention messages in the community when their friends and family had access to HIV treatment, giving them hope for the future.¹⁴

What’s being done?

Methadone maintenance treatment for heroin dependency can help reduce injection risk behavior and HIV seroconversion.¹⁵ In Connecticut, the Department of Mental Health and Addiction Services works with community-based Drug Treatment Advocates (DTAs) to help drug users get into drug abuse and mental health facilities. Each day, the Department faxes the available treatment slots to the DTAs so that their outreach and referrals are guaranteed.¹⁶ Syringe exchange helps reduce the risk of sharing infected needles by exchanging used syringes with new, sterile syringes. It is estimated that the use of a syringe exchange has a two- to six-fold protective effect against HIV risk behaviors.¹⁷ In Oakland, CA, high-risk IDUs who used the syringe exchange were significantly more likely to quit sharing syringes than IDUs who never used the exchange.¹⁸ However, only about 20 million syringes are exchanged annually in the US, equivalent to only about 15 syringes per drug user per year, not nearly enough to meet the number needed for effective HIV prevention.¹⁹ Community-based prevention programs can be effective. These programs address not just individual IDUs needs, but the health and welfare of the entire community. In Harlem, NY, a community advisory board comprised of researchers, health providers and community members identified three public health problems to be addressed: substance use, infectious diseases and asthma. In order to reduce barriers to receiving care and social services, they created a “survival guide” for substance users. They also began a peer training program for IDUs to deliver HIV and hepatitis C prevention interventions at local community-based organizations. The UFO Study in San Francisco, CA, offered a spectrum of services for young IDUs, including HIV and hepatitis B and C testing and counseling and overdose prevention education. The Study had a drop-in site for young IDUs with phones, food and clothes, as well as on-site peer counselors and clinicians. Clients could also receive hepatitis A and B vaccinations. The study also provided a directory of youth-friendly services in several large cities in the US.²⁰ Yet another prevention approach calls for treating HIV+ IDU with highly active antiretroviral therapy and helping them adhere to it. Bringing HIV+ IDUs’ viral loads to undetectable levels could slow transmission of HIV. In San Francisco, CA, Action Point, a storefront drop-in center, offers adherence support for the urban poor with active drug or alcohol addiction. Action Point is open 5 days a week and operates on a harm reduction principle that encourages any positive change in health. The program offers adherence case management, medication dispensing, nursing care, acupuncture and referrals to mental health and substance abuse services.²¹

What still needs to be done?

The biggest barrier to reducing HIV transmission among IDUs is the failure to implement effective prevention programs. Increasing access to quality drug treatment and sterile injection equipment would greatly affect this epidemic among IDUs. However, political attitudes and the criminalization of drug use have hampered prevention efforts in the US.²² Federal and state governments should act quickly to legalize syringe exchange programs and fund more drug treatment. It is often erroneously assumed that IDUs are not comfortable discussing sexual issues. Prevention programs for IDUs need to address sexual behavior as well as injecting behavior. Handing out condoms is not enough; service providers need to initiate discussions about sex. This is especially important for drug use-based interventions, such as syringe exchange programs, drug treatment and 12-step programs. Programs should be multi-faceted and address other non-HIV needs of IDUs. Collaboration between HIV prevention, drug treatment, hepatitis C prevention and mental health services is crucial. Case managers can then give effective referrals to these services, housing or medical care, and help with follow-up and retention. Programs for IDUs should also incorporate a harm reduction approach and be aware that relapse is a common event for IDUs.

Says who? 1. Drug-associated HIV transmission in the United States. Fact Sheet published by the Center for Disease Control https://www.cdc.gov/hiv/risk/substanceuse.html  2. CDC. HIV/AIDS Surveillance Report-cases reported through December 2001. 2002;13:tbl 22,23.https://www.cdc.gov/hiv/library/reports/hiv-surveillance.html 3. Centers for Disease Control and Prevention. Recommendations for prevention and control of hepatitis C virus (HCV) infection and HCV- related chronic disease. Morbidity and Mortality Weekly Report. 1998;47(RR19):1-39. 4. Garfein RS, Doherty MC, Monterroso ER, et al. Prevalence and incidence of hepatitis C virus infection among young adult injection drug users. Journal of AIDS and Human Retrovirology. 1998;18:S11-19. 5. Darke S, Hall W. Heroin overdose: research and evidence-based intervention. Journal of Urban Health. 2003;80:189-200. 6. Access to sterile syringes. Published by the National Center for HIV, STD and TB Prevention. January 2002. www.cdc.gov/idu/facts/ 7. Kral AH, Bluthenthal RN, Lorvick J, et al. Sexual transmission of HIV-1 among injection drug users in San Francisco, USA: risk-factor analysis. Lancet. 2001;357:1397-1401. 8. Bull SS, Piper P, Rietmeijer C. Men who have sex with men and also inject drugs-profiles of risk related to the synergy of sex and drug injection behaviors. Journal of Homosexuality. 2002;42:31-51. 9. Galea S, Vlahov D. Social determinants and the health of drug users: socioeconomic status, homelessness and incarceration. Public Health Reports. 2002;117: S135-S145. 10. Day D. Health emergency 2003: the spread of drug-related AIDS and hepatitis C among African Americans and Latinos. Published by Dogwood Center. 2003. www.dogwoodcenter.org/2003/HE2003.pdf 11. Hilton BA, Thompson R, Moore-Dempsey L, et al. Harm reduction theories and strategies for control of HIV: a review of the literature. Journal of Advanced Nursing. 2001;33:357-370. 12. Is there a more effective social policy with respect to the problems of substance misuse in British Columbia? Presentation to the Vancouver Area Network of Drug Users. 2000. www.vandu.org 13. Latkin CA, Forman V, Knowlton A, et al. Norms, social networks, and HIV-related behaviors among urban disadvantaged drug users. Social Science & Medicine. 2003;56:465-476. 14. .Knowlton AR. Social network approaches to HIV prevention and care: theoretical and methodological considerations of intervention. Presented at the 14th International AIDS Conference, Barcelona, Spain. 2002. ThOrE1501. 15. Gibson DR, Flynn NM, McCarthy JJ. Effectiveness of methadone treatment in reducing HIV risk behavior and HIV seroconversion among injecting drug users. AIDS. 1999,13:1807-1818. 16. Alcohol and drug use and HIV. NASTAD HIV Prevention Fact Sheethttps://www.nastad.org/domestic/hepatitis/drug-user-health  Gibson DR, Brand R, Anderson K, et al. Two- to six-fold decreased odds of risk behavior associated with use of syringe exchange. Journal of Acquired Immune Deficiencies Syndrome. 2002;31:237-242. 18. Bluthenthal RN, Kral AH, Gee L, et al. The effect of syringe exchange on high-risk injection drug users: a cohort study. AIDS. 2000;14:605-611. 19. Galea S, Factor SH, Bonner S, et al. Collaboration among community members, local health service providers, and researchers in an urban research center in Harlem, New York. Public Health Reports. 2001;116:530-539. 20. The UFO Study. https://ufostudy.ucsf.edu/  21. Bamberger JD, Unick J, Klein P, et al. Helping the urban poor stay with antiretroviral HIV drug therapy. American Journal of Public Health. 2000;90:699-701. 22. Des Jarlais DC, Friedman SR. Fifteen years of research on preventing HIV infection among injecting drug users: what we have learned, what we have not learned, what we have done, what we have not done. Public Health Reports. 1998;113:182-188.

Prepared by Pamela DeCarlo and David R. Gibson CAPS September 2003. Fact Sheet #51E Special thanks to the following reviewers of this Fact Sheet: Cyril Colonius, Carol Dawson-Rose, Dawn Day, Pam Klein, Alex Kral, Pam Ling, Kim Shafer, Claire Sterk, Karin Tobin.

Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National Prevention Information Network at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. © September 2003, University of California

Are Informal Caregivers Important in AIDS Care?

What do caregivers do?

Informal caregivers of people with AIDS (PWAs) provide practical help and nursing care at home. They are often the lovers, spouses, friends, or family of someone with AIDS and are not professional care providers. The service they provide is essential to the scope of AIDS care services and saves society great expense. AIDS care services in the US have shifted from hospital-based care to community-based and in-home care. Rising health care costs and many people’s preference to receive health care, and, when possible, to die at home, have driven this trend. The percentage of AIDS deaths in hospitals decreased from 92% in 1983 to 57% in 1991.¹ Informal caregivers have helped make this shift possible. Caregivers provide practical support such as shopping, housekeeping, and transportation to clinics, as well as more basic assistance such as help with bathing, going to the bathroom, and feeding. As symptoms worsen, caregivers are also likely to take on more clinical roles such as keeping track of medications, giving injections, inserting catheters, and cleaning wounds.² Caregivers often provide front-line medical and mental assessment, being the first to note changes in health and to decide when to go for help. One study found the value of personal care tasks and housework performed by caregivers equaled a per capita value of over $25,000 a year for caregiving.³

Who are AIDS caregivers?

A national survey found that 3.2% of the entire US adult population have provided care to a friend, spouse, relative, or lover with AIDS. Almost three-fourths of caregivers were under 40 years old. Caregiving was equally distributed across gender, race and ethnic groups among the general population.⁴ Traditionally, parents, spouses and adult daughters have been the caregivers of people with terminal illnesses. With AIDS, family members still provide care in many cases. However, with gay men, it is more often the partners and friends who provide care. A study of 265 British men with AIDS found that 87% had a close friend or partner as primary caregiver.⁵ What are caregiver burdens? AIDS is prevalent in young and middle-aged people; one in every four new HIV infections occurs in young people under the age of 22.⁶ Caregivers, also, are often in their 20s, 30s and 40s. At that age most people are traditionally building relationships and developing careers, not caring for sick people or preparing for the loss of their partner. The stress involved in this “off-time” caregiving can be enormous.² Unlike professional care providers, informal caregivers are often on call 24-hours a day and are not protected by a limited work day or professional distance. Many informal caregivers have never cared for a seriously ill person, nor have they seen someone die. Also, caregivers must learn skills such as how to give shots or insert catheters, often under extremely stressful circumstances.² Many caregivers of AIDS patients are also their sexual partners. This puts them at risk for HIV infection. For HIV-positive caregivers, disease progression symbolizes the loss of their partner as well as their own changing health status. Caregiving also raises the question of who will care for them when they become ill. Informal caregivers may experience numbness, compassion fatigue, or burnout from losing multiple friends and loved ones to AIDS, or from caring for someone who has been ill for a very long time. In some communities there is still fear and stigma surrounding HIV disease. In addition, people greatly affected by AIDS are often already stigmatized populations: gay men, injection drug users, African-Americans and Latinos. Caregivers may fear social rejection, loss of job and/or housing and may thus conceal their caregiving status from family, friends, and co-workers.⁷ For women with HIV, having responsibility for children at home may pose a barrier to obtaining caregiving support for themselves. A study of HIV-infected mothers across the US found 46% were the sole caretakers of children. Only 30% knew about child care assistance services, and only 8% had contacted those services.⁸ Caregiving for mothers with HIV must include the children as well as the sick mother, and address the welfare of the children after a parent dies. According to one estimate, there could be over 80,000 AIDS orphans in the US by the year 2000.⁹

What can be done to help?

Helping caregivers benefits both the caregiver and the patient. Professional clinicians can include the caregiver in the “triad of care”-doctor, patient, caregiver-and train them in simple medical procedures to help improve patient care.¹⁰ Caregivers can benefit from psychological help (like support groups) to help them cope with the emotional roller coaster involved in caring for a terminally ill person. Caregivers may also need support in grieving the death of a loved one. Some people may be unsure how to act around a person with AIDS, or confused about the best way to show love and support. A study of PWAs identified what they see as helpful and unhelpful actions in caregiving. Helpful actions included expressing love or concern, acting naturally, providing an opportunity for reciprocity and providing encouragement. Unhelpful actions included avoiding interaction, acting embarrassed or ashamed, breaking confidentiality, and criticizing their medical care decisions.¹¹ Doctors and clinical staff have an excellent opportunity for primary and secondary prevention with caregivers during medical appointments or home visits.¹² Informal caregivers may benefit from prevention education and assistance in staying HIV-negative. HIV-positive caregivers need information on early treatment of HIV in order to stay healthier longer. Many organizations have emerged to provide care for AIDS caregivers. Kairos Support for Caregivers and Home Care Companions Inc. in San Francisco, CA, and Gay Men’s Health Crisis in New York City, NY, provide training, educational and emotional support to caregivers with support groups, workshops, and classes. Some religious organizations, such as the HIV/AIDS Ministries Network and the National Episcopal AIDS Coalition, also provide support to caregivers.¹³ In Africa, many different community responses have helped AIDS caregivers. In Rwanda, a Red Cross project trains volunteers to train family caregivers in nursing skills, and to give emotional support. In Kamwokya, Uganda, where 20-30% of people 20-45 years old are HIV-positive, the religious community provides medical and material support to caregivers and also helps break down social tensions and unfounded fears in the community.¹⁴ The UCSF Coping Project, in San Francisco, CA, has been studying the physical and psychological well-being of gay male caregivers for over five years. The project found that while caregivers experience stress and depression, they also experience positive feelings associated with loving, caring and comforting. To sustain this positive well-being, the Coping Project suggests three techniques: define what is personally meaningful and valued by the caregiver; facilitate intimacy and conversation between caregivers and their partners; and help caregivers tune in to “brief human moments” that create positive feelings.² The UCSF Care Study has also been following the caregiving experiences of over 600 friends, partners and family members.¹⁵ Prepared by Pamela DeCarlo and Susan Folkman, PhD

********** Says Who?

1. Kelly JJ, Chu SY, Buehler JW. AIDS deaths shift from hospital to home . American Journal of Public Health. 1993;83:1433-1437. 2. Folkman S, Chesney MA, Christopher-Richards A. Stress and coping in caregiving partners of men with AIDS . Psychiatric Manifestations of HIV Disease. 1994;17:35-53. Contact: Susan Folkman 415/597-9156. 3. Ward D, Brown MA. Labor and cost in AIDS family caregiving . Western Journal of Nursing Research. 1994;16:10-22. 4. Turner HA, Catania JA, Gagnon J. The prevalence of informal caregiving to persons with AIDS in the United States: caregiver characteristics and their implications . Social Science and Medicine. 1994;38:1543-1552. 5. McCann K, Wadsworth E. The role of informal carers in supporting gay men who have HIV related illness. What do they do and what are their needs? AIDS Care. 1992;4:25-34. 6. Rosenberg PS, Biggar RJ, Goedert JJ. Declining age at HIV infection in the United States . New England Journal of Medicine. 1994;330:789-790. 7. Raveis VH, Siegel K. The impact of care giving on informal or familial care givers. AIDS Patient Care. 1991;39-43. 8. Schable B, Diaz T, Chu SY, et al. Who are the primary caretakers of children born to HIV-infected mothers? Results from a multi-state surveillance project . Pediatrics. 1995;95:511-515. 9. Michaels D, Levine C. Estimates of the number of motherless youth orphaned by AIDS in the United Sates. Journal of the American Medical Association. 1992;268:3456-3461. 10. Rabkin J, Remien R, Wilson C. Good Doctors, Good Patients: Partners in HIV Treatment. New York: NCM Publishers, Inc.;1994. Contact: Robert Remien 212/966-2375. 11. Hays RB, Magee RH, Chauncey S. Identifying helpful and unhelpful behaviours of loved ones: the PWA’s perspective . AIDS Care. 1994;6:379-392. 12. D’Arrigo,T. When the caregiver has HIV: early intervention through home care . Caring. 1994;13:4,7,80. Contact: Caring Magazine 202/547-5277. 13. Contacts: Kairos Support for Caregivers 415/861-0877; Home Care Companions, Inc 415/824-3269; Gay Men’s Health Crisis 212/337-3524; HIV/AIDS Ministries Network 212/870-3909; National Episcopal AIDS Coalition 202/628-6628. 14. Anderson S. Community responses to AIDS . International Nursing Review. 1994;41:57-60. Contact: UCSF Care Study, Joe Mullan 800/350-8660. Other caregiver resources: Shelby D. If A Partner Has AIDS: Guide to Clinical Intervention for Relationships in Crisis. Binghamton, NY: Harrington Park Press;1992. Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National AIDS Clearinghouse at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. ©1996, University of California