HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Similar to other chronic diseases, HIV requires lifetime changes in physical health, psychological functioning, social relations, and adoption of disease-specific regimens. The shift from acute to chronic illness requires a self-management model in which patients assume an active and informed role in healthcare decision making to change behaviors and social relations to optimize health and proactively address predictable challenges of chronic diseases generally and HIV specifically. This article reviews literature on chronic disease self-management to identify factors common across chronic diseases, highlight HIV-specific challenges, and review recent developments in self-management interventions for people living with HIV (PLH) and other chronic diseases. An integrated framework of common elements or tasks in chronic disease self-management is presented that outlines 14 elements in three broad categories: physical health; psychological functioning; and social relationships. Common elements for physical health include: a framework for understanding illness and wellness; health promoting behaviors; treatment adherence; self-monitoring of physical status; accessing appropriate treatment and services; and preventing transmission. Elements related to psychological functioning include: self-efficacy and empowerment; cognitive skills; reducing negative emotional states; and managing identity shifts. Social relationship elements include: collaborative relationships with healthcare providers; social support; disclosure and stigma management; and positive social and family relationships. There is a global need to scale up chronic disease self-management services, including for HIV, but there are significant challenges related to healthcare system and provider capacities, and stigma is a significant barrier to HIV-identified service utilization. Recognizing that self-management of HIV has more in common with all chronic diseases than differences suggests that the design and delivery of HIV support services can be incorporated into combined or integrated prevention and wellness services.
Enacted and perceived HIV stigma was examined among substance-using young people living with HIV (YPLH) in Los Angeles, San Francisco, and New York City (N = 147). Almost all YPLH (89%) reported perceived stigma, and 31% reported enacted experiences in the past 3 months; 64% reported experiences during their lifetime. The HIV stigma questions were characterized by factors of avoidance, social rejection, abuse, and shame. In multivariate models, enacted stigma was associated with gay or bisexual identity, symptomatic HIV or AIDS, and bartering sex. Perceived stigma was associated with female gender, symptomatic HIV or AIDS, bartering sex, lower injection drug use, and fewer friends and family knowing serostatus. Gay or bisexual YPLH who were also HIV symptomatic or AIDS diagnosed experienced more HIV stigma than their heterosexual peers.
Efficacious behavioral interventions and practices have not been universally accepted, adopted, or diffused by policy makers, administrators, providers, advocates, or consumers. Biomedical innovations for sexually transmitted disease (STD) and HIV prevention have been embraced but their effectiveness is hindered by behavioral factors. Behavioral interventions are required to support providers and consumers for adoption and diffusion of biomedical innovations, protocol adherence, and sustained prevention for other STDs. Information and communication technology such as the Internet and mobile phones can deliver behavioral components for STD/HIV prevention and care to more people at less cost. Recent innovations in STD/HIV prevention with information and communication technology-mediated behavioral supports include STD/HIV testing and partner interventions, behavioral interventions, self-management, and provider care. Computer-based and Internet-based behavioral STD/HIV interventions have demonstrated efficacy comparable to face-to-face interventions. Mobile phone STD/HIV interventions using text-messaging are being broadly utilized but more work is needed to demonstrate efficacy. Electronic health records and care management systems can improve care, but interventions are needed to support adoption. Information and communication technology is rapidly diffusing globally. Over the next 5–10 years smart-phones will be broadly disseminated, connecting billions of people to the Internet and enabling lower cost, highly engaging, and ubiquitous STD/HIV prevention and treatment support interventions.
1 April 2013 in International Journal of Medical Informatics
Background: Self-monitoring by mobile phone applications offers new opportunities to engage patients in self-management. Self-monitoring has not been examined thoroughly as a self-directed intervention strategy for self-management of multiple behaviors and states by people living with HIV (PLH). Methods: PLH (n = 50), primarily African American and Latino, were recruited from 2 AIDS services organizations and randomly assigned to daily smartphone (n = 34) or biweekly Web-survey only (n = 16) self-monitoring for 6 weeks. Smartphone self-monitoring included responding to brief surveys on medication adherence, mental health, substance use, and sexual risk behaviors, and brief text diaries on stressful events. Qualitative analyses examine biweekly open-ended user-experience interviews regarding perceived benefits and barriers of self-monitoring, and to elaborate a theoretical model for potential efficacy of self-monitoring to support self-management for multiple domains. Results: Self-monitoring functions include reflection for self-awareness, cues to action (reminders), reinforcements from self-tracking, and their potential effects on risk perceptions, motivations, skills, and behavioral activation states. Participants also reported therapeutic benefits related to self-expression for catharsis, nonjudgmental disclosure, and in-the-moment support. About one-third of participants reported that surveys were too long, frequent, or tedious. Some smartphone group participants suggested that daily self-monitoring was more beneficial than biweekly due to frequency and in-the-moment availability. About twice as many daily self-monitoring group participants reported increased awareness and behavior change support from self-monitoring compared with biweekly Web-survey only participants. Conclusions: Self-monitoring is a potentially efficacious disruptive innovation for supporting self-management by PLH and for complementing other interventions, but more research is needed to confirm efficacy, adoption, and sustainability.