Barriers to Self-Care in a Cohort of Low-Income White Women Living With HIV/AIDS.

In this cohort of 12 low-income White women with HIV disease, five conditions at diagnosis emerged as barriers to self-care: (a) health care provider (HCP) failure to mobilize resources, (b) HCP devaluing of women, (c) social devaluing, (d) economic problems, and (e) legal problems. The core category, disconnection from self-care, linked the five barriers. The self-care barriers were shaped by complex intra- and interpersonal relationships. Motivation to engage in self-care was promoted by relationships that valued women's health. Relational dialogue within a partnership provided the model for HCP relationships that encouraged women to build knowledge and skills for self-care. At diagnosis, HCP interactions were critical in the HIV-disease trajectory because HCPs held knowledge and power to mobilize needed resources, as well as the power to offer (or withhold) the caring and compassion that encouraged women to engage in self-care.

Key words: women, HIV infection, self-care barriers, low income

The relationship between socioeconomic status and the self-care practices of low-income HIV-positive women is understudied. Low-income women represent a growing proportion of the number of HIV/AIDS cases diagnosed each year (Stevens, 1995; Wortley & Fleming, 1997). As this number grows, socioeconomic issues and social context become increasingly recognized as cofactors influencing women's self-care (Melnick, et al., 1994; Moneyham, Seals, Sowell, Cohen, & Guillory, 1996a, 1996b; Nokes, 1995; Seals et al., 1995; Sowell et al., 1996; Stevens, 1995; Ward, 1993a, 1993b; Wortley & Fleming, 1997). The knowledge base in nursing lacks midrange theories that address barriers to self-care in low-income women living with HIV/AIDS. The findings reported here represent a segment of a larger study addressing self-care practices of low-income White women living with HIV/AIDS (Leenerts, 1997). The focus of this report addresses relational interactions at the time of diagnosis that wielded powerful influences on self-care, particularly interactions that devalued women and their health needs.

Self-care was defined as the self-described behaviors women engaged in to promote or improve their health. Self-care barriers were those factors that constrained or prevented women from engaging in self-care practices. Relationships of importance included intra- and interpersonal interactions that influenced women's self-care attitudes and behaviors. Frequently, women described relationships with health care providers (HCPs) as unhelpful and at times hostile. In addition, they encountered social stigma as well as economic and legal barriers that constrained self-care. To examine the effects of these relational interactions on women's self-care, two dimensions of relationship were compared. The first dimension of relationship addressed private intrapersonal relationships and was defined as the inner-subjective interactions forming the self-images that motivated and shaped self-care practices. The second dimension of relationship addressed public interpersonal relationships and was defined as the social-structural factors conveying social messages about valuing the health of low-income HIV-positive women. These social-structural factors influenced access to health care resources as well as the practice of self-care skills.

Background and Significance

HCPs are challenged to understand the intrapersonal (subjective) and interpersonal (social-structural) factors acting to influence self-care. In this challenge, the context of social relationships figures as an important motivational factor (Jordan, Kaplan, Miller, Stiver, & Surrey, 1991). How a woman relates to her own being, how she relates to those within her support system and beyond it, and how she relates to her environment, all exert a powerful and determining influence on self-care practices. Evidence has consistently and persuasively been mounting to demonstrate that many low-income HIV-positive women are disconnected from supportive relationships that would serve to guide and motivate healthy ways of confronting experiences that threaten their health (Jordan et al., 1991; Nokes, 1995; Nyamathi, Flaskerud, & Leake, 1997; Ward, 1993a, 1993b). Low-income women are at a disadvantage in their self-care because they are economically dependent and limited in their ability to mobilize financial resources. For example, they may not have the money to purchase vitamins and herbs, special diet preparations, and medications, or the money to pay for psychotherapy, substance abuse treatment programs, child care, transportation, and so forth. Additionally, their financial dependence may limit their access to health care and their choice of HCPs.

As the HIV epidemic increasingly affects low-income women, the relationship between socioeconomic status and access to health care resources becomes an important factor in these women's self-care. Questions about why low-income women are increasingly infected force a widening of the lens for understanding the complex interactions between economics and resource availability (Flaskerud & Winslow, 1998). Ward (1993a, 1993b) addressed socioeconomic-based differences in persons with HIV disease and challenged the health care community to acknowledge that HIV is a qualitatively different disease for low-income women. Surveillance data on HIV/AIDS has divided people into groups of ethnicity and gender without stratification by economic level. Because of this, the influence of low socioeconomic status on access to health care resources is not well understood in any gentler or ethnic group. For instance, statistics describing White women with AIDS are often presented as if White women represent one homogeneous group (Flaskemd & Thompson, 1991). By midyear 1997, 20% of the women with AIDS reported to the Centers for Disease Control and Prevention (CDC) (1997) were White women. Many of these women are poor and disconnected from health care services (Hellinger, 1993). Within this group of HIV-positive women, White women represent an understudied population (e.g., Flaskerud & Thompson, 1991). The need to investigate low-income White women's experiences of self-care while living with HIV/AIDS is important because these women are part of the growing number of women who are infected.

Until recently, the experiences of low-income women with HIV/AIDS have received little attention. Nokes (1995) described socioeconomic characteristics of women diagnosed with HIV infection: "Women are often poor, use public facilities, are suspicious of institutions or agencies, and are crisis oriented in their health-seeking behaviors" (p. 243). Ward (1993a) suggested that HIV infection for "poor" women is not a new disease; "it is only another life-threatening condition which parallels serious health problems already experienced by these populations" (p. 413). Ward (1993a) noted that because of the circumstances of their lives, poor women are not healthy. Other authors have acknowledged the link between low income and poor health (Flaskerud & Winslow, 1998; Hellinger, 1993; Melnick et al., 1994; Nelson, 1994; Wallace, 1993). However, the extent to which low-income serves as a barrier to self-care practices remains unknown. Sowell et al. (1997) explored self-care activities of women with HIV infection and found that these women frequently engaged in a wide range of self-care activities. Their study identified that even though HIV-positive women might be reluctant to use available health care services, they were engaging in other activities to promote their health. Sowell et al. described HCP perceptions of low-income women and self-care.

 
   The perception by health care providers that poor, minority women lack the 
   ability to provide self-care or to participate fully in the development of 
   treatment options may be particularly prevalent in the provision of care to 
   women with HIV disease. (p. 20) 

Further investigation of self-care practices of low-income women is needed to identify how economic factors serve as barriers to resource procurement and self-care. This information is necessary for the development of education programs and interventions that support low-income women's self-care practices.

Literature Review

The literature review focuses on the private-intrapersonal and public-interpersonal relationships that influence low-income HIV-positive women's self-care practices. The literature often presents disparaging views of low-income women with HIV/AIDS. Literature describing women's personal experience of HIV/AIDS is fraught with the problems of these women's lives. These problems include a mixture of blows to both the private and public self. At the private intrapersonal level, women's problems go beyond diagnosis of a terminal disease. Rudd and Taylor (1992) pointed out that these problems center around illiteracy, fears of discrimination, domestic violence, substance abuse, childhood physical and sexual …