Marcia McDonnell Holstad, DSN, RN, C, FNP
Colleen DiIorio, PhD, RN, FAAN
Mabel K. M. Magowe, MSN, RN
Women comprise the fastest growing group of persons with AIDS. They are often diagnosed later in the disease, when antiretroviral therapy (ART) is strongly indicated. Antiretroviral therapy has transformed the course of HIV/AIDS to a treatable, chronic illness. This article provides a profile of women with HIV/AIDS and describes ART. Selected research related to adherence and motivation is summarized. Psychosocial and economic concerns specific to women, ART, adherence, and motivation are presented. The article reviews challenges for risk reduction behaviors for HIV + women, such as sexual activity and substance abuse. The authors discuss the Keeping Health and Active with Risk reduction and Medication Adherence (KHARMA) Project, a research project in progress that was designed to promote adherence to both ART and risk reduction behaviors in HIV+ women. The study includes two groups: a motivational group intervention based on motivational interviewing and a health promotion program control group tailored to the needs of HIV+ women. A description of the tailored intervention and project update is included.
Citation: Holstad, M., DiIorio, C., Magowe, M., (January 31, 2006). "Motivating HIV Positive Women to Adhere to Antiretroviral Therapy and Risk Reduction Behavior: The KHARMA Project". Online Journal of Issues in Nursing. Vol. 11 No. 1, Manuscript 4.
Key words: adherence, AIDS, antiretroviral therapy, ART, health promotion, HIV, HIV+ women, risk reduction behaviors, RRB, motivational interviewing
Antiretroviral therapy has transformed the course of HIV/AIDS to a treatable, chronic illness.
Women comprise the fastest growing group of persons with AIDS. They are often diagnosed later in the disease, when antiretroviral therapy (ART) is strongly indicated. Antiretroviral therapy has transformed the course of HIV/AIDS to a treatable, chronic illness. Though effective in reducing the amount of circulating HIV virus and increasing the CD4 lymphocyte count, ART regimens are complex and can have serious side effects. Persons on ART must maintain near perfect adherence at about 95% of all prescribed doses in order to prevent opportunistic infections and hospitalizations (Patterson et al., 2000).
Regimen related difficulties and a high caregiver burden for children and/or other HIV+ family members make near perfect adherence difficult for women to achieve. In addition, as women on ART begin to feel better, and resume normal activities, including sexual activities (Pratt et al., 1998), adherence to risk reduction behaviors (RRB) becomes crucial to prevent the spread of HIV (Janssen et al., 2001).
Regimen related difficulties and a high caregiver burden for children and/or other HIV+ family members make near perfect adherence difficult for women to achieve.
Reports of poor adherence to risk reduction behaviors among people on ART are emerging (Murphy, Miller, Appleby, Marks, & Mansergh, 1998; Vanable, Ostrow, McDirnan, Taywaditep, & Hope, 2000; Van de Straten, Gomez, Saul, & Parian, 2000). Data indicate that only about 11% (O’Campo et al., 1999) to 63% (Wilson, 1999) of HIV+ women use condoms consistently. Poor adherence to ART has the potential to diminish treatment effectiveness, promote viral resistance, and increase potential for sexual and perinatal transmission. Poor adherence to RRB by women on ART contributes to the spread of HIV disease and drug resistant strains.
The purpose of this article is to describe current issues related to HIV+ women, and how they relate to antiretroviral therapy adherence and use of risk reduction behaviors. We will provide a profile of women with HIV/AIDS, describe ART, and summarize selected research related to adherence and motivation. The article reviews challenges for risk reduction behaviors for HIV + women. We also describe a nursing intervention tailored to HIV+ women that was designed to improve adherence to ART and RRB. The intervention is currently being tested within a large behavioral clinical trial, the KHARMA Project, which is also described.
Profile of Women with HIV/AIDS
AIDS is now the third leading cause of death in women ages 25 to 44 years, and the leading cause of death in African American women ages 24 to 34.
Globally, nearly half of the 40 million people living with HIV are female (Kaiser, 2005a). The percent of AIDS cases in U.S. adult and adolescent women has risen steadily from 11% in 1990 to 26% in 2003 (CDC, 1991, 2004). Women accounted for about 31% of new HIV infections in 2003 (CDC, 2004). AIDS is now the third leading cause of death in women ages 25 to 44 years, and the leading cause of death in African American women, ages 24 to 34 (Kaiser, 2005b). The CDC (2001) estimates that between 120,000 and 160,000 of adult and adolescent women, and 1 in 160 African American women, are HIV-infected.
The primary modes of HIV transmission in women are heterosexual contact and injection drug use (CDC, 2003). Often, sex and substance use are intermingled such that the actual source of infection is difficult to identify. In addition, some HIV+ women might also voluntarily exchange sex
The primary modes of transmission in women are heterosexual contact and injection drug use...[often] intermingled such that the actual source of infection is difficult to identify.
for financial or material goods such as housing, food, or clothing in order to survive. The majority of women with AIDS are between 15 and 44 years of age, belong to a racial or ethnic minority, and reside in the northeastern and southern states. They are single, unemployed, and poor, having a household income of less than $10,000 (Barken et al., 1998
; Levine, 1999
; Wohl et al., 1998
). Compared to HIV+ men, women are more likely to have an income below $10,000 (64% vs. 47%) and be insured by Medicaid (61% vs. 39%) (Bozzette et al., 1999
Women with AIDS have higher rates of depression (Morrison et al., 2002), have high levels of emotional distress (Van Servellen et al., 1998), experience more fatigue and anxiety (Barroso, Carlson & Meynell, 2003), are subject to physical and sexual abuse (Liebschutz, 2000), and are more responsible for care giving to children and partners. They also have to deal with stigma, rejection, and isolation (Barroso & Powell-Cope, 2000; Sandelowski, Lambe, & Barroso, 2004) and often hide their diagnosis more so than their male counterparts (Andrews & Williams, 1993). These social and economic factors increase their vulnerability to poor adherence to both antiretroviral medications and use of risk reduction behaviors.
Antiretroviral Therapy (ART)
Despite the life saving aspects of ART, there are costs to the woman who decides to begin therapy.
ART, a therapy composed of multiple anti-HIV drugs, is prescribed to many HIV positive persons based on current guidelines developed by the Panel on Clinical Practices for Treatment of HIV Infection (2005) (see also www.AIDSinfo.nih.gov). The therapy usually includes combinations of one or two nucleoside analogs (NRTI), and a protease inhibitor (PI) or a non-nucleoside reverse transcriptase inhibitor (NNRTI) (Panel on Clinical Practices). The goals of ART are to attain maximal and durable suppression of HIV viral load; restore and preserve immunologic function (improved CD4 lymphocyte count); improve quality of life, and reduce HIV-related opportunistic infections (OI), morbidity, and mortality. The benefits of ART are well documented; due to its effectiveness, HIV is now considered a chronic disease.
Adherence to ART is a complex and dynamic behavior. Factors that influence adherence are multiple. They are summarized and categorized by Reynolds (2004) as follows:
- Treatment experiences (e.g., regimen complexity, side effects)
- Support from provider and others
- Health care environment and material factors (e.g., access to care, financial concerns)
- Informational resources (e.g., knowledge about HIV, medications)
- Cognitive and psychological function (e.g., cognitive impairment, literacy, forgetfulness, depression)
- Substance use of drugs, alcohol, tobacco
- Health beliefs in effectiveness of medications and self-efficacy for taking medicication
Despite the life saving aspects of ART, there are costs to the woman who decides to begin therapy. Patterson et al. (2000) reported that an adherence rate of at least 95% is needed to sustain health and prevent hospitalization and OI. This is much higher than the usual 80% standard held for other chronic diseases such as hypertension (Mehta, Moor, & Graham, 1997). Although the ART regimens are becoming simpler for the patient just beginning therapy, women with long term HIV or AIDS may be on complex schedules or a large number of pills. Many of the medications have dietary restrictions and most have short and/or long term side effects. Women must endure side effects such as nausea, vomiting, diarrhea, fatigue, headaches, dry skin, rashes, sleep disturbances, numbness, muscle aches, anemia, changes in body fat and body image, or the possibility of hepatitis, pancreatitis, or a fatal drug reaction.
Fear of violence or abandonment for disclosing her HIV+ status may put a woman at high risk for non-adherence to both ART and RRB.
Consequently, young, previously healthy women, who are not used to taking medications, are being asked to be perfect pill takers for regimens fraught with potential side effects. The difficulties with adherence, then, become apparent. These difficulties compound when HIV+ women are caregivers for children and partners. In addition, certain antiretrovirals influence the effectiveness of oral contraceptives, thus condom use is essential to prevent pregnancy and sexually transmitted diseases (STDs), including HIV.
In addition to the multiple factors described above, HIV+ women have special adherence issues related to social factors, such as poverty, perceived powerlessness, caregiver burdens, stigma, and disclosure of HIV status (Zorilla, 2000). In clinical practice, the authors have noted that HIV+ women, more so than men, just do not like to take medication and will resist therapy because of the numerous pills, large size of the pills, complicated dosing schedules, or fear and mistrust about side effects. Roberts and Mann (2000) verified these observations. Fear of violence or abandonment for disclosing her HIV+ status may also put a woman at high risk for non-adherence to both ART and RRB. Family concerns and caregiving, particularly when a partner, child, or both are HIV+, may overburden a woman and exact a toll on self-care. As one patient put it: "We put everyone else first." The costs associated with ART, and the burdens imposed, place women at higher risk for poor adherence to ART medications and consistent use of risk reduction behaviors.
...most women say they have access to ART, but face problems sticking to prescribed regimens, dealing with strict and frequent time schedules, and tolerating side effects.
The challenge to improve access and adherence to ART for women remains critical. Lake, Snell, Perry, and Associates (2003) conducted a focus group project for The Kaiser Family Foundation (www.kff.org) about the experiences of lower income, HIV+ women with access to health care. They explain that most women say they have access to ART, but face problems sticking to prescribed regimens, dealing with strict and frequent time schedules, and tolerating side effects. Women report they forget to take the medication or may take drug holidays to avoid the burden of frequent medication taking, or because of the desire to live a normal life. Most women reported a strong desire for information about HIV/AIDS, and noted their main resources as health care professionals and other HIV+ women. The focus groups revealed that women had needs beyond medical care, such as transportation, mental health counseling, childcare, access to new and low cost drugs, and support during therapy. Women stated that they could not access this support from family members for fear of rejection.
Motivation, Women, and Adherence to ART
...little is known about the differences in treating women versus men in regard to medication doses and side effects.
In the past, it has been difficult to recruit women into drug clinical trial studies. Therefore little is known about the differences in treating women versus men in regard to medication doses and side effects. Likewise, few studies have explored what motivates women to adhere to ART. This section provides an overview of selected research related to motivation and adherence in HIV+ women.
Lake et al (2003) found that connectedness with health care providers, particularly female providers, nurses, and nurse practitioners, experienced in HIV/AIDS care was important for women and lead to reports of better care. Although children can be motivators to remain healthy, they can also be a source of anxiety about the future in case of death.
Sankar, Luborsky, Schuman, and Roberts (2002), conducted a study on adherence discourse among African-American women taking ART. They used in-depth interviews to identify sources of influence used by 15 African-American women to describe their adherence behavior. The women, who attended an inner-city infectious disease clinic, were asked to provide information on self-reported adherence and sources of authority or reference groups in adherence practice. The results showed that sources of influence that encouraged adherence included physician, quasi-scientific rationale, belief that the drugs work, religiosity and faith (support from God), family members (mom), secular popular cultural prescription (they say) television talk shows, the body instinct (my body tells me when I need it), friends, and self (I know when I need it), the belief in the power of positive thinking and individual responsibility. The results also showed adherence rate of 69%.
Many women tracked viral load and CD4 cell counts as tangible effectiveness of treatment.
Powell-Cope, White, Henkelman & Turner (2003) conducted a qualitative and quantitative assessment of ART adherence of substance abusing women as a pilot project for a reminder device intervention. Three focus groups were conducted with 24 substance abusing HIV+ women to define factors that hinder or promote adherence to ART. Previously developed structured questions on adherence were administered to a second group of 24 substance abusing women, who also participated in a pilot study for the feasibility, acceptability and effect of medication reminder devices.
The Powell-Cope et al. study (2003) analyzed data on a complex set of beliefs, attitudes, and behaviors related to adherence in substance-abusing women living in urban settings. Results demonstrated that participants recognized treatment benefits. Many women tracked viral load and CD4 cell counts as tangible evidence of effectiveness of treatment. Most participants affirmed a renewed positive outlook on life from effective treatment, and noted the need to remain optimistic. Increased lifespan and more time with children, a significant partner, friends, and family were expressed as advantages of effective ART. Participants used words such as grateful, thankful, blessed, happy, comfortable, and willing to describe the positive aspects of taking ART and depressing, cranky, sad, guilty, irresponsible, nervous, anxious, and afraid to describe the negative effects. Areas of confusion included the need to take ART, even when feeling well, and medication changes and schedules.
Women admitted that substance abuse was a difficult barrier to taking ART medications, and tended to stop ART rather than illegal drugs and alcohol.
Women admitted that substance use was a difficult barrier to taking ART medications, and tended to stop ART rather than illegal drugs and alcohol. Women mentioned use of reminders and aids, such as pillboxes, to promote adherence. Most expressed personal responsibility for taking medications, and a few expressed the importance of support from family, friends, others who are HIV positive and on ART, and health care providers. The most common reason for missing medications was forgetfulness due to various circumstances (e.g., sleeping, being busy, and changes in schedule). Many respondents indicated that feeling too good or too bad were barriers to adherence. Spirituality, and the power of prayer, was mentioned as a factor that promoted adherence, especially for African-Americans. The results of Powell-Cope et al.’s study (2003) demonstrate the number and complexity of social and psychological issues that need to be explored when dealing with ART in women.
Small sample size and use of self-report methods limit the generalizability of these studies to other populations. Authors recommended further research to explore specific motivators and discover how patients support their adherence to the ART regimen.
Challenges for Risk Reduction Behaviors for HIV + Women
In addition to adherence to ART, it is important for HIV+ women to practice risk reduction behaviors (RRB) to prevent the spread of HIV (Janssen et al., 2001). Two previously mentioned significant challenges for RRB in HIV+ women, sexual activity and substance abuse, are discussed in this section.
As HIV+ women on ART regain their health and strength, it is likely that they will resume or increase their sexual activity and possibly other risky behaviors...
As HIV+ women on ART regain their health and strength, it is likely that they will resume or increase their sexual activity (Pratt et al, 1998) and possibly other risky behaviors such as substance use or injection drug use. It has been noted in a recent meta-analysis, that between 9% and 77% of HIV+ persons engage in unprotected sex (Crepaz, Hart, & Marks, 2004). Reports of consistent condom use in HIV+ women range from a low of 11% (O’Campo et al., 1999), to 63% (Wilson, 1999). A woman may not disclose her HIV status to partners due to fear of violence or abandonment, thus, she may not insist on condom use when a partner refuses (Zorilla, 2000). In addition, widespread use of ART may decrease transmission concerns and increase risky behaviors (Murphy et al., 1998; Vanable et al., 2000; Van de Straten et al., 2000; Wilson & Minkoff, 2001; Wilson et al., 2004). Substance use also continues. In a study of 206 HIV+ patients (including 79 women) who received care at an Infectious Disease Clinic, 20% of the women reported drug use and exchanging sex for drugs in the previous 6 months (Campos, Rothenberg, Johnson, & Del Rio, 1999).
...patients and partners may believe that because their viral load is undetectable, and they feel so much better, the virus is absent or dead and they are incapable of transmitting HIV to others.
Currently there is no identified viral load level at which HIV transmission does not occur, but a strong association between increasing viral load and increasing risk of heterosexual transmission has been documented. Low viral load in plasma (a result of ART) correlates with lower amounts of the virus in semen and cervical/vaginal fluids, and a lower incidence of sexual and mother to child transmission (Barroso et al., 2000; Castilla, del Romero, Hernando, Marincovich, Garcia, & Rodriguez, 2005; Quinn et al, 2000). It is well known that ART does not completely eradicate the virus. However, patients and partners may believe that because their viral load is undetectable, and they feel so much better, the virus is absent or dead and they are incapable of transmitting HIV to others. Their motivation to continue condom use or other risk reduction behaviors wanes (Crepaz et al., 2004; Hecht, 2001; Wilson & Minkoff, 2001).
Patients may tire of the constant stress to maintain safe behaviors and cognitively disengage from risk reduction practices. This phenomenon has been documented in men who have sex with men (MSM), however has not been well studied in women (McKirnan, Ostrow, & Hope, 1996; Willams, Elwood, & Bowen, 2000). Condom use and negotiation may pose problems for women, particularly those who rely on men for shelter or material goods, are not assertive, or are older and did not use condoms during their younger years.
Patients may tire of the constant stress to maintain safe behaviors and cognitively disengage from risk reduction practices.
Substance abuse may contribute to poor medication adherence and inconsistent use of risk reduction behaviors. Casual and chronic substance users are more likely to engage in unprotected sex or share needles, especially when they are under the influence of drugs and alcohol. In addition, they are less likely to access health care (Leigh & Stall, 1993). Novotna and colleagues (1999) reported an overall drug use rate of 34% in a sample of 260 HIV+ women. Drug users in this sample had more male sex partners, used condoms less consistently in the previous year, and had more sexually transmitted diseases on baseline than non drug users. A recent study found that HIV+ women who used drugs were less likely than nonusers to take their antiretroviral medicines exactly as prescribed (Sharpe, Lee, Nakashima, Elam-Evans, & Fleming, 2004).
In sum, unique social barriers to care and the psychologic, epidemiologic, economic, and biologic aspects of HIV disease in women pose a number of challenges that impact an HIV+ woman’s ability to take medications and use risk reduction behaviors consistently. Interventions to promote adherence to medications and/or risk reduction behaviors should specifically address these needs and the unique characteristics of this population. The following section describes the KHARMA project, a research project that focuses on these complex challenges with a tailored intervention to promote adherence to ART and RRB in HIV+ women.
The KHARMA Project
Brief Description and Project Update
KHARMA is an acronym for Keeping Health and Active with Risk reduction and Medication Adherence. The KHARMA Project was designed by the authors to address the specific issues of adherence to ART and RRB as they relate to women with HIV/AIDS. It is a National Institutes of Health/National Institute of Nursing Research (NIH/NINR) funded behavioral clinical trial developed to test the effect of a nurse-led motivational group intervention on adherence to ART and RRB, as compared to a nurse led health promotion control group. The hypotheses are: 1) women in the motivational groups will have better adherence to ART and use more RRB, have higher mean CD4 lymphocyte counts and lower mean viral loads, and 2) the effect of the intervention will be mediated by higher levels of self-efficacy, more positive outcome expectancies, and more specific and effective personal goals. Use of RRB is measured by self-report and ART adherence is measured by self report and electronic medication bottle caps. Each participant is assessed at baseline and followed four times over a 9 month period after completion of the group sessions. The project is currently in its third year and will recruit a total of 216 HIV+ women from three HIV/AIDS clinical sites within metropolitan Atlanta, Georgia.
During the project period, we expect to conduct approximately 18 motivational groups and 18 health promotion control groups. Topics discussed in both groups are tailored specifically within the context of the issues that women with HIV deal with on a regular basis. Each of the groups meets weekly for 8 weeks. The sessions last about 1.5 to 2 hours and the participants receive monetary and non-monetary incentives for each session. Weekly non-monetary incentives for all participants include a meal, transportation tokens, toiletry items, child care, water bottles, tote bag or lunch bag, and picture frame magnets. In addition, massage therapists conduct shoulder, neck, or chair massages at two of the sessions and a beauty consultant conducts a beauty and skin care demonstration at one of the sessions. The women in the intervention group receive a purse size inspirational calendar, a motivational journal, a motivational medication adherence video, and items to promote safe behaviors, such as male and female condoms.
The motivational groups in the KHARMA project are based on motivational interviewing (MI) techniques (for additional information see www.motivationalinterviewing.org). Motivational Interviewing was developed by Miller (1983) and further elucidated by Miller and Rolnick (1991). The original focus of this method was to encourage behavior change in those with addictions, however, the method has gained popularity in health care research and has been applied to a variety of health behaviors (Dilorio et al., 2003; Resnicow et al., 2000; Smith, Heckemeyer, Kratt, & Mason, 1997). It is based on the Rogerian counseling model (Boeree, 1998) and consistent with Prochaska’s Transtheoretical Model that views behavior change as entailing 6 steps: precontemplation, contemplation, preparation, action, maintenance and relapse (Prochaska & Velicer, 1997; Velicer, Prochaska, Fava, Norman, & Redding, n.d.). The MI counselor assists clients to recognize and explore resistance and ambivalence, and supports self-efficacy through these stages (Diclemente & Velasquez, 2002).
Motivational Interviewing has five central principles, as follows:
- Expressing empathy and building rapport with the client through reflective listening and acceptance.
- Developing discrepancy between the person’s life goals and the effects of current behavior on future goals.
- Avoiding conflict by using a positive approach and avoiding negating and direct confrontation.
- Rolling with resistance deals with resistance or ambivalence to change by assisting clients to explore options.
- Supporting self-efficacy and encouraging clients to consider and choose personal options, and to develop belief in their own power to make changes.
Motivational group sessions and health promotion program groups used in the KHARMA Project are briefly described below.
Motivational Group Session
The KHARMA Project motivational group intervention is designed to empower women to make decisions and develop strategies about taking antiretroviral medications as prescribed and the consistent use of risk reduction behaviors. Nurse group facilitators use MI techniques within a group setting to develop discrepancies between current behaviors and values, help participants weigh the costs and benefits of behavior change, increase self-efficacy, and develop weekly goals for behavior change or maintenance. Topics for each group session are listed in Table 1.
Table 1. Topics for Weekly Motivational Group Sessions
1. Introduction, Group Guidelines, Exploration of Lifestyles
2. ART Awareness: The Good Things and the Not so Good Things
3. ART Adherence: Change & Exploring Goals
4. Sharing successes & ART Strategies
5. Risk Reduction behavior: Knowledge & Skills
6. Risk Reduction behavior: Balance & Negotiation
7. Disclosure of HIV Status: To tell or Not to Tell
8. Summary & Termination: Putting it all Together with Goals and Values
The first and last sessions include discussion about both ART and RRB. There are 3 sessions devoted to medication adherence and 3 sessions specific to risk reduction behaviors. A session on disclosure of HIV status is included because it is a major and pervasive issue that affects both medication taking and use of risk reduction behaviors.
There is a nurse facilitator and co-facilitator for each motivational group session. All of the "MI nurses" undergo an extensive training program that includes both theory and practice in MI skills, HIV, and antiretroviral medications. The training culminates with leading two group sessions composed of standardized patients (trained actors who portray HIV+ women who participate in the KHARMA group sessions). These sessions are videotaped and feedback is provided. Upon completion of training, nurses may lead groups of research participants. Regular updates and additional training on MI are provided.
Nurse facilitators use MI to guide women to analyze the pros and cons of medication adherence and then identify and develop individualized strategies to deal with personal barriers.
At the initial session, women choose the first topic they wish to address. The topical sessions are sequential and build on each other. To that end, there is progression from exploration of positive and negative aspects of behavior (including positive and negative aspects of behavior change), to developing strategies to deal with barriers to change or maintenance, to examination of how behaviors fit within their current values. Women ultimately develop weekly written goals for changing or maintaining their behavior.
The basic format for motivational groups includes an introduction and review of confidentiality and group rules. A discussion about progress toward weekly goals follows and then the nurse introduces the topic for the session. There is usually a discussion/activity to promote thinking about behaviors related to the session topic. For example, in the session "ART Awareness: The good things and the not so good things," women make a list of the negative things about ART and discuss these barriers to taking medications. During the discussion, facilitators allow free flow of complaints or issues, and resist the urge to offer suggestions and "fix" the problem. Participants then list and discuss positive things about taking the ART medications. Nurse facilitators use MI to guide women to analyze the pros and cons of medication adherence and then identify and develop individualized strategies to deal with personal barriers. The facilitator uses strategies to encourage women to make independent decisions about strategies and behaviors. Because it is contradictory to the spirit of MI, facilitators rarely offer unsolicited advice. If they need to correct mistaken facts, or offer suggestions or comments, they will ask permission first and then provide several suggestions from which participants can choose.
Open-ended questions, reflection, and summarization techniques elicit the strengths and barriers in regard to a women's motivation or confidence levels.
In sessions 3, 4, and 6, levels of motivation and confidence related to taking medications as prescribed and/or use of risk reduction behaviors are explored via the use of "human motivation/confidence rulers." Numbers from 0 to 10 are placed on the floor and women are asked to stand on the number that represents their motivation to take ART or use a specific risk reduction method (e.g., condoms). Open-ended questions, reflection, and summarization techniques elicit the strengths and barriers in regard to a woman's motivation or confidence levels. "Change talk," or language that indicates the need or desire to change one’s behavior, and "commitment language," or expressions of one’s plan or commitment to implement behavior change are encouraged and affirmed.
Weekly goals cards are used to further enhance planned changes. At the end of every session, women are asked to write a goal for the week. They may write two goals, a session goal and a personal goal. The KHARMA Project pilot study identified that personal issues, such as finding adequate housing and/or employment; relationships with a mother, child or significant other; and recovery from drug use impact adherence behavior. Women often had to resolve these in order to improve adherence. Thus, we include the personal and the session goal. Women may share their goals with the group as they feel comfortable.
Sessions end with a brief stress reduction or relaxation exercise. Women choose a "symbol" with which to close the group, such as a handshake or a prayer.
Health Promotion Program Group
The health promotion program (HPP) group is also 8 sessions (1.5 to 2 hours) and led by trained nurse health educators. The HPP group focuses on nutrition, exercise, stress recognition, and women’s health issues. The topics for this group are listed in Table 2.
Table 2. Weekly Topics for the Health Promotion Program Group Sessions
1. Introduction & Overview of the effects of nutrition, exercise and stress on the body and immune system
2. Nutrition Part I: Eating for Energy
3. Nutrition Part II: Cholesterol, Fat, & Label Reading
4. Exercise & Fitness Part I: The Awareness of Physical changes and how to deal with them
5. Exercise & Fitness Part II: The Importance of a Physically Active Lifestyle Weight Changes: Recognizing the ups and downs of body weight
6. Stress & Depression: Signs, Symptoms, & some Solutions General Wellness: lung cancer and smoking cessation and Lymphoma
7. Women’s Health: The Importance of Breast Self exam and Understanding Menstruation & Menopause
8. Women’s Health: Recognizing & Understanding Gynecological Problems
All content in the HPP is tailored to women with HIV. For example, since abnormal pap smears are more prevalent in HIV+ women compared to those who are seronegative, information about the importance of regular pap smears and follow-up procedures (such as colposcopy, biopsy, and loop electrosurgical excision procedure for abnormal smears) is discussed (Ellerbrock et al., 2000; Harris et al., 2005; Six et al., 1998). Each participant receives a manual with all the content for each session. Activities designed to engage participants and reinforce content are included in each session. Activities that participants really enjoy are educational games modeled after TV game shows that review and reinforce information from the previous session. The women compete to win small prizes for correct answers. Some even take notes, so they’ll be sure to get all of the information.
As of this writing, the KHARMA Project is still in progress. The design and implementation of the tailored intervention for HIV+ women described above suggests several nursing implications for care of this population. These implications are presented below.
It is important for nurses to understand issues unique to women with HIV/AIDS so they can provide culturally appropriate and disease specific nursing care.
HIV+ women have multiple social, psychological, and economic challenges that impact their ability to consistently take antiretroviral therapy and use risk reduction behaviors. It is important for nurses to understand issues unique to women with HIV/AIDS so they can provide culturally appropriate and disease specific nursing care. Suggested nursing implications include:
- Educate and counsel all HIV+ women about the disease process, medications, and lifestyle adjustments imposed by the diagnosis.
- Comprehensive HIV education must include discussions about strategies to promote regular medication-taking and consistent use of risk reduction behaviors, such as safer sex and avoidance of substance use.
- Evaluate women for psychosocial concerns, such as depression, stigma, and caregiver burden.
- Evaluate economic stressors, including those related to housing, transportation, and access to health care.
Nurse-led motivational groups...are designed to empower women to overcome barriers to prescribed medication adherence and to practice risk reduction behaviors.
Studies show that HIV+ women who are on ART require education and encouragement to attain and maintain a high level of adherence. Nurses receive training in group dynamics, interviewing, and therapeutic communication techniques in their basic nursing program, thus they have fundamental skills in place to learn MI and advanced group facilitation techniques and deal with sensitive issues, such as sexual behavior. Nurse-led motivational groups, such as those in the KHARMA project, are designed to empower women to overcome barriers to prescribed medication adherence and to practice risk reduction behaviors. Participation in the KHARMA Project intervention groups allows women to receive accurate and realistic information about medications and risk-reduction practices. Moreover, they are encouraged to identify and use strategies to maintain adherence, with emphasis on the importance of caring for the self.
Results of the KHARMA Project and other studies that focus on adherence issues of women will be useful to nurses who provide care to women with HIV. Further testing of various approaches to adherence education and motivation for HIV+ women will lead to better understanding of strategies that work and will promote evidenced based nursing practice.
Author Note: The KHARMA Project is funded by the National Institutes of Nursing Research R01NR008094. Human subjects approval was obtained from the Emory University Institutional Review Board.
Marcia McDonnell Holstad, DSN, RN, C, FNP
Marcia McDonnell Holstad is an assistant professor in the Family Community Health Department at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, Georgia. She teaches in the masters’ and doctoral programs, and is trained in motivational interviewing. Her doctorate is from the University of Alabama in Birmingham. As a nurse practitioner, she provides care to women with HIV/AIDS at an infectious disease clinic one day a week. In 2003, Dr. McDonnell Holstad received the Health Care Hero award from the Atlanta Business Chronicle for her work with women with HIV/AIDS in Atlanta. Her research areas are adherence, risk reduction behaviors, women with HIV/AIDS, and motivational interviewing. She is the principal investigator of the KHARMA project, which is funded by the National Institute of Nursing Research (NINR).
Colleen DiIorio, PhD, RN, FAAN
Colleen DiIorio is a Professor in the Department of Behavioral Sciences and Health Education at Rollins School of Public Health. She has extensive experience in health promotion research. Her work covers two broad areas that address health behavior and behavioral change: adherence/self-management and HIV prevention. In one project funded by the National Institute of Nursing Research (NINR), Dr. DoIorio and colleagues examined the use of Motivational Interviewing as an approach to improving adherence to antiretroviral medications. In a second NINR funded grant, she explored the role of antecedents in epilepsy self-management, including medication adherence. This work has resulted in a better understanding of adherence, MI as applied to medication adherence, and procedures for evaluating the approach in clinical settings. Dr. DiIorio has also conducted studies to test programs designed to reduce HIV risk among adolescents. In one project, she designed a program for fathers of adolescent sons, and in another, she is working to develop a program for mothers of 6-12 year old children. She is co-investigator on the KHARMA project.
Mabel K. M. Magowe, MSN, RN
Mabel K.M. Magowe, MSN, RN is a doctoral student and Fulbright Fellow at the Nell Hodgson Woodruff School of Nursing and works on the KHARMA project with her advisor, Dr. McDonnell Holstad. She is a nurse-midwife and has practiced and taught the theory and practice of midwifery for over twenty years in her country, Botswana. She has coordinated the integration of HIV/AIDS content in the University of Botswana curricula, and taught the content to nursing and non-nursing students. She was also involved in HIV prevention projects undertaken by the government of Botswana, including the Prevention of Mother-to-child Transmission (PMTCT) of HIV, and the development and implementation of a counseling training curriculum for nurse-midwives in preparation for that project. Her dissertation will focus on exploring predictors of safer sex communication and negotiation among young women in Botswana, where HIV/AIDS statistics are very high.
Andrews, S., & Williams, A. (1993). Mother-child relationship in the HIV positive family. International Conference on AIDS, 9 (1) (Abstract No. WS-D05-6).
Barken, S., Melnick, S., Preston-Martin, S., Weber, K., Kalish, L., Miotti, P., et al. (1998). The women’s interagency HIV study. Epidemiology, 9 (2), 117-125.
Barroso, J., Carlson, J.R., & Meynell, J. (2003). Physiological and psychological markers associated with HIV-related fatigue. Clinical Nursing Research, 12(1), 49-68.
Barroso, J., & Powell-Cope, G.M. (2000). Metasynthesis of qualitative research on living with HIV infection. Qualitative Health Research, 10(3), 340-353.
Barroso, P., Schechter, M., Gupta, P., Melo, M., Vieira, M., Murta, F., et al. (2000). Effect of antiretroviral therapy on HIV shedding in semen. Annals of Internal Medicine, 133(4), 280-284.
Boeree, C.G. (1998). Personality theories. Carl Rogers. Retrieved January 8, 2006 from www.ship.edu/~cgboeree/rogers.html.
Bozzette, S, Berry, S., Duan, N., Frankel, M., Leibowitz, A., Lefkowitz, D., et al. (1999). The care of HIV infected adults in the United States. New England Journal of Medicine, 339(26), 1897-1904.
Campos, P., Rothenberg, R., Johnson, W., & Del Rio, C. (1999). The context for adherence. National HIV Prevention Conference, (Abstract No. 345).
Castilla, J., del Romero, J., Hernando, V., Marincovich, B., Garcia, S., & Rodriguez, C. (2005). Effectiveness of highly active antiretroviral therapy in reducing heterosexual transmission of HIV. Journal of Acquired Immune Deficiency Syndromes, 40 (1), 96-101.
CDC News Update. (2003). Sexual functioning among HIV infected women. AIDS Patient Care and STD, 17(2), 75-83.
Centers for Disease Control and Prevention. (2004). HIV/AIDS Surveillance Report, 2003. Vol 15. Atlanta: US Department of Health and Human Services, Center for Disease control and Prevention. http://cdc.gov/hiv/stats/hasrlink.htm.
Centers for Disease Control and Prevention. (2001). HIV/AIDS Surveillance Report, 12(2), 1-44. Atlanta, GA: Author.
Centers for Disease Control and Prevention. (1991). The HIV/AIDS epidemic: The first 10 years. Morbidity and Mortality Weekly Report, 40 (22), 358-363,369.
Crepaz, N., Hart, T., & Marks, G. (2004). Highly active antiretroviral therapy and sexual risk behavior: A meta-analytic review. JAMA, 292(2), 224-236.
DiClemente, C., & Velasquez, M. (2002). Motivational interviewing and the stages of change. In W. Miller & S. Rollnick, Motivational Interviewing: Preparing people for change (2nd ed.) (pp. 201-216). New York: Guilford Press.
Dilorio, C. Resnicow, K. McDonnell, M. Soet, J McCarty, F. & Yeager, K. (2003). Using motivational interviewing to promote adherence to antiretroviral medications: A pilot study. Journal of the Association of Nurses in AIDS Care, 14(2), 52-62.
Ellerbrock, T.V., Chiasson, M.A., Bush, T.J., Xiao-Wei, S., Sawo, D., Brudney, K., et al. (2000). Incidence of cervical squamous intraepithelial lesions in HIV-infected women. JAMA, 283(8), 1079-1080.
Harris, T.G., Burk, R.D., Palefsky, J.M., Massad, L.S., Bang, J.Y., Anastos, K., et al. (2005). Incidence of cervical squalmous intraepithelial lesions associate with HIV serostatus, CD4 cell counts, and human papillomavirus test results. JAMA, 293(12), 1471-1476.
Hecht, F.M. (2001). Approaches to HIV prevention among seropositive patients in the clinical care setting. Topics in HIV Medicine, 9(3), 12-14.
Janssen, R., Holtgrave, D., Valdiserri, R., Shepherc, M., Gayle, H., & DeCock, K. (2001). The serostatus approach to fighting the HIV epidemic: Prevention strategies for infected individuals. American Journal of Public Health, 9 (7), 1019-1024.
Kaiser Family Foundation. (2004, December). HIV/AIDS Policy Fact Sheet: Women and HIV/AIDS in the United States. Menlo Park, CA. available www.kff.org.
Kaiser Family Foundation. (2005a, September). HIV/AIDS Policy Fact Sheet: The Global HIV/AIDS Epidemic. Menlo Park, CA. available www.kff.org.
Kaiser Family Foundation. (2005b, September). HIV/AIDS Policy Fact Sheet: The HIV/AIDS Epidemic in the United States. Menlo Park, CA. available at www.kff.org.
Lake, Snell, Perry, & Associates. (2003). The healthcare experiences of women with HIV/AIDS: Insights from focus groups. Executive Summary. Available at www.kff.org.
Leigh B, & Stall R. (1993). Substance use and risky sexual behavior for exposure to HIV: issues in methodology, interpretation, and prevention. American Psychologist, 48, 1035–1045.
Levine, A. (1999). HIV Disease in women. Available at www.medscape.com/medscape/HIV/Clinicalmgmt/CM.v09/public/index-CM.v09.html.
Liebschutz, J., Feinman, G., Sullivan, L., Stein, M., & Samet, J. (2000). Physical and sexual abuse in women infected with the human immunodeficiency virus: increased illness and health care utilization. Archives of Internal Medicine, 160 (11), 1659-1664.
McKirnan, D.J., Ostrow, D.G., & Hope, B. (1996). Sex drugs and escape: a psychological model of HIV-risk sexual behaviours. AIDS Care, 8 (6), 655-69.
Mehta, S., Moor, R., & Graham, N. (1997). Potential factors affecting adherence with HIV therapy. AIDS. 11, 1665-1670.
Miller, W. (1983). Motivational interviewing with problem drinkers. Behavioural Psychotherapy, 11(2), 147-172.
Miller, W., & Rollnick, S. (1991). Motivational interviewing: Preparing people to change addictive behavior. New York: Guilford Press.
Miller, W.R., & Rollnick, S. (2002). Motivational Interviewing: Preparing people for change (2nd ed.). New York: Guilford Press.
Morrison, M.F., Petitto, J.M., Ten Have, T., Gettes, D.R., Chiappini, M.S., Weber, A.L., et al. (2002). Depressive and anxiety disorders in women with HIV infection. American Journal of Psychiatry, 159 (5), 789-796.
Murphy, S., Miller, L.C, Appleby R., Marks, G., & Mansergh, G. (1998). Antiretroviral drugs and sexual behavior in gay and bisexual men: when optimism enhances risk. International Conference on AIDS, 12, 209 (Abstract No. 14137).
Novotna, L., Wilson, T.E., Minkoff, H., McNutt, L-A., DeHovitz, J.A., Ehrlich, I., et al. (1999). Predictors and risk-taking consequences of drug use among HIV-infected women. Journal of Acquired Immune Deficiency Syndromes & Human Retrovirolgy, 20(5), 502-507.
O’Campo, P., Fogarty, L., Gielen, A.C., Armstrong, K., Bond, L., Galvotti, C., et al. (1999). Distribution along a stages-of-behavioral-change continuum for condom and contraceptive use among women accessed in different settings. Prevention of HIV in women and infants demonstration projects. Journal of Community Health, 24 (1), 61-72.
Panel on Clinical Practices for Treatment of HIV Infection. (2005, April 7). Guidelines for the use of antiretroviral agents in HIV-1 infected adults and adolescents. Available at www.AIDSinfo.nih.gov.
Patterson, D.L., Swindells, S., Mohr, J., Brester, M., Vergis, E., Squier, C., et al. (2000). Adherence to protease inhibitor treatment and outcomes in patients with HIV infection. Annals of Internal Medicine, 133, 21-30.
Powell-Cope, G.M., White, J., Henkelman, E.J., & Turner, B.J. (2003). Qualitative and quantitative assessments of HAART adherence of substance-abusing women. AIDS Care, 15(2), 239-249.
Pratt, R., Robinson, N., Loveday, H., Pellowe, C., Franks, P., Loveday, C., et al. (1998). Improvement in sexual drive and a falling viral load are associated with adherence to anti-retroviral therapy. International Conference on AIDS, 12, 589-90. (Abstract No. 32343).
Prochaska, J. & Velicer, W. (1997). The transtheoretical model of health behavior change. American Journal of Health Promotion, 12 (1), 38-48.
Quinn, T., Wawer, M., Sewankambo, N., Serwadda, D., Li, C., Wabwire-Mangen, F., et al. (2000). Viral Load and heterosexual transmission of human immunodeficiency virus type 1. The New England Journal of Medicine, 342 (13), 921-929.
Resnicow, K., Coleman-Wallace, D., Jackson, A., DiGirolamo, A., Odom, E., Wang, T., et al. (2000) Dietary change through Black churches: Baseline results and program description of the "Eat for Life" trial. Journal of Cancer Education, 15, 156-163.
Reynolds, N. (2004). Adherence to antiretroviral therapies: State of the science. Current HIV Research, 2, 207-214.
Roberts, K.J., & Mann, T. (2000). Barriers to antiretroviral medication adherence in HIV-infected women. AIDS Care, 12(4), 377-386.
Sandelowski, M., Lambe, C., & Barroso, J. (2004). Stigma in HIV-positive women. Journal of Nursing Scholarship, 36(2), 122-128.
Sankar, A. Luborsky, M. Schuman, P & Roberts, G. (2002). Adherence discourse among African-American women taking HAART. AIDS Care; 14(2), 203-218.
Sharpe, T.T., Lee, L.M., Nakashima, A.K., Elam-Evans, L.D., & Fleming, P. (2004). Crack cocaine use and adherence to antiretroviral treatment among HIV-infected black women. Journal of Community Health, 29, 117–127.
Six, C., Heard, I., Bergeron, C., Orth, G., Poveda, J-D., Zagury, P., et al. (1998). Comparative prevalence, incidence and short-term prognosis of cervical squamous intraepithelial lesions amongst HIV-positive and HIV-negative women. AIDS, 12(9), 1047-1056.
Smith, D., Heckemeyer, C., Kratt, P., & Mason, D. (1997). Motivational interviewing to improve adherence to a behavioral weight-control program for older obese women with NIDDM. Diabetes Care, 20 (1), 52-54.
Vanable, P.A., Ostrow, D.G., McDirnan, D.J., Taywaditep, K.J., & Hope, B.A. (2000). Impact of combination therapies on HIV risk perceptions and sexual risk among HIV-positive and HIV-negative gay and bisexual men. Health Psychology, 19 (2), 134-45.
Van der Straten, A., Gomez, C.A., Saul, J., & Padian, N. (2000). Sexual risk behaviors among heterosexual HIV serodiscordant couples in the era of post-exposure prevention and viral suppressive therapy. AIDS, 14(4), 47-54.
VanServellen, G., Sarna, l., Nyamathi, A., Padilla, G., Brecht, M., & Jablonski, K. (1998). Emotional distress in women with symptomatic HIV disease. Issues in Mental Health Nursing, 19(2), 173-88.
Velicer, V.F, Prochaska, J.O., Fava, J.L., Norman, G.J., & Redding, C.A. (n.d.). Detailed overview of the Transtheoretical Model. Retrieved January 8, 2006 from www.uri.edu/research/cprc/TTM/detailedoverview.htm. Source: Velicer, V.F, Prochaska, J.O., Fava, J.L., Norman, G.J., & Redding, C.A. (1998). Smoking cessation and stress management: Application of the Transtheoretical Model of behavior change. Homeostasis, 38, 218-233. [adapted]
Williams, M.L., Elwood, W., & Bowen, A., (2000). Escape from risk: A qualitative exploration of relapse to unprotected anal sex among men who have sex with men. Journal of Psychology & Human Sexuality, 11(4), 25-49.
Wilson, T. E., Gore, M.E., Greenblatt, R., Cohen, M., Minkoff, H., Silver, S., et al. (2004). Changes in sexual behavior among HIV-infected women after initiation of HAART. American Journal of Public Health, 94(7), 1141-1146.
Wilson, T.E., Massad, L.S., Riester, K.A., Barkan, S., Richardson, J., Young, M., et al. (1999). Sexual, contraceptive, and drug use behaviors of women with HIV and those at high risk for infection: results from the Women’s Interagency HIV Study. AIDS, 13(5), 591-8.
Wilson, T.E. & Minkoff, H. (2001). Condom use consistency associated with beliefs regarding HIV disease transmission among women receiving HIV antiretroviral therapy. Journal of Acquired Immune Deficiency Syndrome, 27(3), 289-291.
Wohl, A. R., Lu, S., Odem, S., Sorvillo, F,. Pegues, C. F., & Kerndt, P. R. (1998). Sociodemographic and behavioral characteristics of African-American women with HIV and AIDS in Los Angeles County, 1990-1997. JAIDS: Journal of Acquired Immune Deficiency Syndromes, 19(4), 413-20.
Zorilla, C. (2000). Antiretroviral combination therapy in HIV-1 infected women and men: Are their responses different? International Journal of Fertility, 45(2), 195-199.
© 2006 Online Journal of Issues in Nursing
Article published January 31, 2006
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