HIV illness representation as a predictor of self-care management and health outcomes: a multi-site, cross-cultural study.

Research has shown that the perceptions that form the cognitive representation of an illness (illness representation) are fundamental to how persons cope with illness. This study examined the relationship of illness representation of HIV with self-care behavior and health outcomes. Data were collected at 16 sites in the United States, Taiwan, Norway, Puerto Rico and Colombia via survey. HIV seropositive participants (n = 1,217, 31% female, 38% African-American/Black, 10% Asian/Pacific Islander and 26% White/Anglo) completed measures of illness representation based on the commonly accepted five-component structure: identity, time-line, consequences, cause, and cure/controllability (Weinman et al. 1996, Psychology and Health, 11, 431-445). Linear regression analyses were conducted to investigate relationships among illness representation, self-care behaviors and quality-of-life outcomes. Components of illness representation were associated with self-care and health outcomes, indicating that the cognitive representation of HIV has consequences for effective illness management. For example, perception that there is little that can be done to control HIV was significantly associated with fewer and less effective self-care activities (F = 12.86, P < .001) and poorer health function in the domain of quality-of-life (F = 13.89, P < .001). The concept of illness representation provides a useful framework for understanding HIV symptom management and may be useful in directing development of effective patient-centered interventions.

Symptom management and self-care for peripheral neuropathy in HIV/AIDS.

Peripheral neuropathy is the most common neurological complication in HIV and is often associated with antiretroviral therapy. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of peripheral neuropathy in HIV disease, sociodemographic and disease-related correlates and self-care strategies. A convenience sample of 1,217 respondents was recruited from data collection sites in several US cities, Puerto Rico, Colombia and Taiwan. Results of the study indicated that respondents with peripheral neuropathy (n=450) identified 20 self-care behaviors including complementary therapies, use of medications, exercise and rest and/or elevation of extremities. Ratings of frequency and effectiveness were also included. An activities checklist summarized into five categories of self-care behaviors including activities/thoughts, exercise, medications, complementary therapies and substance was used to determine self-care behaviors. Taking a hot bath was the most frequent strategy used by those with peripheral neuropathy (n=292) and received the highest overall rating of effectiveness of any self-management strategies included in this study at 8.1 (scale 1-10). Other self-care strategies to manage this symptom included: staying off the feet (n=258), rubbing the feet with cream (n=177), elevating the feet (n=236), walking (n=262), prescribed anti-epileptic agent (n=80), prescribed analgesics (n=84), over-the-counter medications (n=123), vitamin B (n=122), calcium supplements (n=72), magnesium (n=48), massage (n=156), acupuncture (n=43), reflexology (n=23) and meditation (n=80). Several behaviors that are often deemed unhealthy were included among the strategies reported to alleviate peripheral neuropathy including use of marijuana (n=67), cigarette smoking (n=139), drinking alcohol (n=81) and street drugs (n=30).

Self-care management for neuropathy in HIV disease.

Peripheral neuropathy is the most common neurological complication in HIV and is often associated with antiretroviral therapy. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of peripheral neuropathy in HIV disease, the self-care strategies, and sources of information for self-care utilized by the sample. A convenience sample of 422 respondents was recruited from an Internet web-based site developed by the University of California, San Francisco International HIV/AIDS Research Network and from five geographic data collection sites (Boston, New York City, San Francisco and Paterson in the USA, and Oslo, Norway). Results of the study indicated that respondents with peripheral neuropathy identified 77 self-care behaviours including complementary therapies, use of medications, exercise and rest and/or elevation of extremities. Sources of information included health care providers, informal networks and media sources.