Academic journal article Social Work Research

Assessing Capacity for Self-Care among HIV-Positive Heads of Household: Bilingual Validation of the Parental Self-Care Scale

Academic journal article Social Work Research

Assessing Capacity for Self-Care among HIV-Positive Heads of Household: Bilingual Validation of the Parental Self-Care Scale

Article excerpt

For many people living with HIV/AIDS (PLHA), coping with a lifelong and life-threatening illness is complicated by the roles and responsibilities of parenting (Antle, Wells, Goldie, DeMatteo, & King, 2001). The demands of child rearing, taken together with experiences of stigmatization, injustice, and uncertainty about one's own future, underscore the need for professionals to better understand the circumstances of HIV-positive parents and to develop constructive means of support.

Interviewing English- and Spanish-speaking HIV-positive women, Aranda-Naranjo, Portillo, Schietinger, and Norgan (2002) found that caring for self was often secondary to caring for family. Respondents valued creating an atmosphere of normalcy for their children despite their own illness, spent considerable time on children's needs, and identified them as their primary reason for living. Fullilove and colleagues (2002) identified challenges faced by women of color in obtaining culturally sensitive services, reporting that ancillary services (transportation, child care, and mental health and substance abuse treatment) may be especially difficult to obtain. Such women may find themselves disadvantaged when competing for service funding and may be least likely to effectively advocate for their own financial, political, or social needs.

Balancing obligations as caregiver and care recipient may mean taking care of basic survival needs, negotiating care for infected and affected household members, managing adherence to one's own medical regimen, and finding providers who communicate well and can be trusted (Aranda-Naranjo et al., 2002). These issues may be further complicated by immigrant status. Celia and colleagues (1998) observed the importance of developing assessments of health-related quality of life that could be usefully compared across differing populations, while Miller, Guarnaccia, and Fasina (2002), acknowledging the disproportionate impact of AIDS on people of Latino origin, called for increased Spanish translation of tools for prevention education and health-related assessment.

Bandura's (1997) concept of self-efficacy, the belief that one's behavior would result in a certain desired outcome, has been associated with numerous health-related conditions. Generally considered to be variable with circumstances rather than characteristic of individuals, it is best conceptualized for measurement as being specific to particular experiences and expressed as real-world challenges that people of interest are likely to face (DeVellis & DeVellis, 2001). For women in advanced stages of HIV/AIDS who have young children, successful adherence to antiretroviral medications has been significantly related to self-efficacy regarding their treatment, and outcome expectancies regarding its benefits (Murphy, Greenwell, & Hoffman, 2002).

Among people affected by HIV/AIDS, parents' beliefs in their abilities to care for their children have been assessed by Dorsey, Klein, and Forehand (1999) using Allen's (1993) Parenting Efficacy Scale to measure five dimensions: love, control, communication, education, and general self-efficacy.

Shively and colleagues (2002) reported an initial validation of the HIV Self-Efficacy Questionnaire, capturing six domains of PLHA experience (managing mood, medications, symptoms, and fatigue; communicating with the health care provider; and getting support).

The need for measures allowing comparisons among differing cultural and social groups is particularly strong in the context of the HIV/AIDS pandemic, where so many different groups require assistance in varying health care and social service settings (Skevington, 2002). Our instrument represents the first effort to capture self-efficacy from the perspective of parents in HIV-infected or -affected households, referenced to the challenges of caring for self while remaining responsible for others, and is the first assessed for its potential use with both English- and Spanish-speaking respondents. …

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