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Peer Counseling for HIV-Infected Women

July 1996

Peer counseling is a strategy for support and behavioral change that has been used for over 20 years in a variety of settings: students with academic difficulties or from low socioeconomic backgrounds; drug and alcohol abuse; prevention of teen pregnancy; prenatal care; domestic violence victims; geriatric patients and their caregivers; stress management; heart disease prevention; and military veterans with post-traumatic stress syndrome. In the context of HIV prevention, preliminary data suggested that peer counseling of minority women in an urban methadone treatment program increased their sense of purpose and self-worth, reduced sexual and drug use practices associated with risk for HIV infection, and promoted assumption of leadership roles and dissemination of accurate AIDS-related information in their communities (Harris RM, et al. Clin Nurs Res 1992; 1:9).

Poverty, minority status, and substance abuse are frequently part of the lives of both men and women with HIV infection. The economic and social disenfranchisement and systemic disorganization which often accompany these characteristics lead to fractured, crisis-oriented health care and poor compliance with recommended therapies. Issues such as child care and other family care responsibilities, childbearing, and domestic violence are largely unique to women and may cause further isolation and inattention to their own health needs. Butz et al, in a study of health care utilization by 90 HIV-infected women and their infants, found that although there was 73% adherence with infant immunization schedules by nine months, only 46% of mothers had ever sought health care at an HIV clinic within the first 12 months postpartum. (Butz AM et al. J Nurse Midwifery 1993;38:103).

A peer counselor for the woman with HIV infection is another woman who is infected or affected by HIV and who shares common features of background, values, beliefs, and/or lifestyle. Interactions can be in a one-on-one or group setting. Peer counseling can be utilized in the following ways:

  • providing general health information
  • helping women understand specific aspects of their individual disease processes and management plans
  • counseling concerning HIV testing, treatment and transmission, sex and drug use behaviors, and contraception
  • identifying barriers to care
  • facilitating access to substance abuse treatment
  • housing assistance
  • acting as a patient advocate in specific situations, such as the gynecologic examination or discussion with other health care providers
  • fostering trust in the health care system and promoting treatment compliance
  • providing social support and enhancement of self-esteem

Not to be overlooked or underestimated is the benefit to the peer counselor herself, in terms of increased self-esteem, self assurance and comfort and familiarity with the health care system.

This strategy has been enormously successful in the Johns Hopkins Obstetrical Clinic, where each new OB registrant receives pre-test HIV counseling and is offered voluntary screening from a community peer who is personally affected by HIV. Using this technique, over 95% of new patients accept screening. Women who are seropositive and pregnant are followed by a peer counselor throughout pregnancy, receiving general support and counseling about HIV and pregnancy, including use of AZT to reduce perinatal transmission. In the past year, 22 of 22 women accepted this therapy, and 20 of these showed macrocytosis indicating probable compliance. This is a rather remarkable achievement given the level of distrust of AZT common in our largely inner-city and minority patient community.

Peer counselors at Johns Hopkins recognize the importance and power of their work. Roslynn Howard, who entered our program as a patient, has now been an integral part of our team as a peer counselor since 1991. She serves on the boards of several local HIV advocacy, research and service organizations and has spoken nationally and internationally about her work. She says:

When asked what kind of job I have, I answer with pride: I am an HIV/STD peer educator and counselor. In this time of managed health care, physicians and nurses have limited time to spend with patients, and are unable to give in depth counseling or education about procedures, medicines, diagnosis, etc.. Sometimes language, ethnic, and social differences make patients feel less informed or empowered. A peer counselor can act as a liaison and take the time needed to help the patient fully understand and can offer comfort as well.

Information is more likely to be accepted and understood if it is given by someone who is a trusted member of the community, has the time to answer questions, and can show the community how to incorporate knowledge into their personal setting.

A lot of hard data evaluating the effectiveness of peer counseling programs do not as yet exist. However, the CDC-funded study Project Cares utilizes peer counseling as an intervention to promote condom and contraceptive use in HIV-infected and at-risk women. This study, which uses STDs and unintended pregnancy as outcome measures, is nearing an end, and we can expect a more rigorous evaluation of this strategy in the near future.

Several years ago, after giving a presentation on the evaluation and management of HIV infection in women, a young woman in the audience who was herself HIV-infected came up to me. "Dr. Anderson," she said, "that was a very good talk, but one thing you don't understand. HIV is not my worst problem." For most of the rest of their lives after becoming infected, HIV-seropositive individuals are clinically asymptomatic or have mild, nonspecific, and easily manageable signs and symptoms. However, the social framework within which they live is continuous and is perhaps the major determinant of quality of life, and ultimately serves as either a facilitator or a barrier to good clinical care. Peer counseling is an effective strategy for helping patients overcome some of those barriers.

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This article was provided by Johns Hopkins AIDS Service. It is a part of the publication Hopkins HIV Report.