Background: Human immunodeficiency virus (HIV) infection has become a serious health problem for low-income African American women in their childbearing years. Interventions that help them cope with feelings about having HIV and increase their understanding of HIV as a chronic disease in which self-care practices, regular health visits, and medications can improve the quality of life can lead to better health outcomes.
Objective: This study aimed to determine the efficacy of an HIV self-care symptom management intervention for emotional distress and perceptions of health among low-income African American mothers with HIV.
Method: Women caregivers of young children were randomly assigned to self-care symptom management intervention or usual care. The intervention, based on a conceptual model related to HIV in African American women, involved six home visits by registered nurses. A baseline pretest and two posttests were conducted with the mothers in both groups. Emotional distress was assessed as depressive symptoms, affective state, stigma, and worry about HIV. Health, self-reported by the mothers, included the number of infections and aspects of health-related quality of life (i.e., perception of health, physical function, energy, health distress, and role function).
Results: Regarding emotional distress, the mothers in the experimental group reported fewer feelings of stigma than the mothers in the control group. Outcome assessments of health indicated that the mothers in the experimental group reported higher physical function scores than the control mothers. Within group analysis over time showed a reduction in negative affective state (depression/dejection and tension/anxiety) and stigma as well as infections in the intervention group mothers, whereas a decline in physical and role function was found in the control group.
Conclusions: The HIV symptom management intervention has potential as a case management or clinical intervention model for use by public health nurses visiting the home or by advanced practice nurses who see HIV-infected women in primary care or specialty clinics.
Human immunodeficiency virus (HIV) infection has reached epidemic proportions in the United States and throughout the world (Centers for Disease Control, 2001). It has become a particular health problem for African American women in their childbearing years (Ruiz, Molitor, Bruckner, & Zukowski, 2002;Smith et al., 2000). A rapid rise in HIV infections is especially evident among poor and minority women living in smaller cities and rural areas of the Southeast (Fiscus et al., 1996;Heckman et al., 1998;North Carolina Department of Health and Human Services, 2001).
Pathologically, HIV affects cell-mediated and antibody-mediated immunity, causing a progressive, severe depression of the immune system and resulting in a progression of related health problems and other symptoms, which, if untreated, can cause serious life-threatening complications (Matthews et al., 2000). Of particular concern are opportunistic infections and malignancies that can be fatal. Among women, gynecologic infections and other gynecologic health problems can occur throughout the disease trajectory and may persist or recur (Minkoff, Eisenberger-Matityahu, Feldman, Burk, & Clarke, 1999). New advances in HIV treatment, however, have slowed the rate of HIV progression and reduced many of its life-threatening complications. Thus, HIV has been reconceptualized from an acute, fatal illness to a serious chronic disease that involves complex medical regimens and necessitates preventive efforts to reduce complications and prolong life (Paterson, Thorne, & Russell, 2002).
Low-income African American women, however, delay their pursuit of medical care after diagnosis, often present at clinical facilities for advanced disease, and are less likely to use health services consistently once HIV is diagnosed (Anderson & Mitchell, 2000;Raveis, Siegel, & Gorey, 1998;Ruiz et al., 2002;Stein et al., 2000). A number of issues may affect the health-seeking behaviors of poor African American women (e.g., lack of current information about HIV) (Kalichman & Rompa, 2000). This is particularly important because many of the health problems and symptoms associated with HIV are common experiences of any woman, and inadequate understanding about the meaning of symptoms in the context of HIV may mean that they are ignored. Thus, inadequate self-care strategies aimed at the prevention and early treatment of infections and other health problems exacerbated by irregular healthcare visits may compromise immune status and lead to more rapid progress of HIV in women (Anderson & Mitchell, 2000).
Emotional responses to the diagnosis of HIV also may have an impact on self-care and health-seeking patterns. Feelings of fear, guilt, shame, and stigma, coupled with a sense of fatalism, may lead to coping behaviors (e.g., denial or avoidance) that can impede focusing on HIV (Black & Miles, 2002;Jones, Beach, & Forhand, 2001;Powe, 1996;Smith et al., 2000). Stressors associated with poverty (e.g., physical abuse, history of child sexual abuse, and substance abuse) can increase emotional distress (Ensminger, 1995;Gielen, McDonnell, Wu, O’Campo, & Faden, 2001). Depressive symptoms, a common response to the diagnosis of HIV (Moneyham, Sowell, Seals, & Demi, 2000;Morrison et al, 2002;Penzak, Reddy, & Grimsley, 2000) that also is frequent among low-income African American women struggling with poverty (Ensminger, 1995), can affect self-care and health-seeking behavior (Jones et al., 2001).
Two important steps to improve the health of African American women with HIV are helping them cope with their feelings about having HIV and leading them to understand that HIV is a chronic disease in which self-care practices, regular health visits, and medications can improve health and extend life. Interventions must consider the sociocultural context of these women’s lives such as stresses associated with poverty and family issues. The maternal role of these women, including the responsibilities for the care of children, especially preschool and early school-age children who are more dependent on them, can be another barrier to their ability to focus on their own healthcare needs (Boyd-Franklin, Steiner, & Boland, 1995;Hackl, Somlai, Kelly, & Kalichman, 1997;Stein et al., 2000). On the other hand, motivation to stay healthy to care for children could become a motivator for self-care.
The purpose of this study was to determine the efficacy of an HIV self-care symptom management intervention in reducing emotional distress and improving health among low-income African American mothers with HIV. The study was based on the Maternal HIV Self-Care Symptom Management framework (Miles, Holditch-Davis, & Black, 2001). The framework was adapted from the University of California-San Francisco (UCSF) model for symptom management (UCSF School of Nursing Symptom Management Faculty Group, 1994), a review of the literature on African American women with HIV, and qualitative analysis of longitudinal interviews with HIV-positive African American mothers. It was postulated that by helping mothers cope with their emotional responses to the diagnosis of HIV, and by reframing their understanding of HIV from that of an immediate life-threatening illness to that of a chronic disease, their emotional distress and health would improve.
The intervention was designed to enable the mothers to share and process emotional responses related to HIV including depression, fear, guilt and shame, and feelings of stigma. The intervention also used cognitive reframing to change the women’s understanding of HIV through knowledge. They learned how HIV infection affects the body and the importance and efficacy of self-care behaviors such as identifying, preventing, and managing symptoms, as well as seeking regular HIV-related and general healthcare. Barriers to management and prevention associated with the mother’s social situation were considered. The mothers’ concern about being healthy enough to care for their children was used as a motivator for improved self-care. It was hypothesized that the mothers in the intervention group would have less emotional distress (fewer depressive symptoms, improved affective state, and reduced feelings of stigma and worry about HIV) and better self-reported health in terms of infections, health-related quality of life (perception of health, physical function, energy, health distress and role function) than the mothers in the control group.
Margaret Shandor Miles, PhD, RN, FAAN, is Professor, School of Nursing, University of North Carolina at Chapel Hill.
Diane Holdich-Davis, PhD, RN, FAAN, is Professor, School of Nursing, University of North Carolina at Chapel Hill.
Joseph Eron, MD, is Associate Professor, Department of Infectious Diseases, School of Medicine, University of North Carolina at Chapel Hill.
Beth Perry Black, RN, MSN, is Clinical Associate Professor, School of Nursing, University of North Carolina at Chapel Hill.
Cort Pedersen, MD, is Professor, Department of Psychiatry, School of Medicine, University of North Carolina at Chapel Hill.
Donna A. Harris, BSN, is Social Research Assistant, School of Nursing, University of North Carolina at Chapel Hill.
Accepted for publication July 14, 2003.
The authors received partial support from the following grants: R01 NR 04416, P30 NR 03962, P30 HD27360, GCRC RR0046, and R01 MH 51019. John Preisser, PhD, provided statistical consultation, and Lynda L. Bell, RN, ANP, provided clinical consultation. Other members of the research team included Mardi Clayton, MSN, Mary Foster Dillard, MSN, Senyene Eyo, BSN, Jenise V. Gillespie, PhD, RN, Joann Haggerty, MSW, Valerie Lunsford, MSN, and Yaoshi Wu.
Corresponding author: Margaret S. Miles, RN, PhD, School of Nursing, Carrington Hall, CB7460, The University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7460 (e-mail: Mmiles@email.unc.edu).