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Sexual Health Exchange, 1999 - no. 3
Selfmanagement health education for chronic HIV-infection
Sohini Sengupta and Allen L. Gifford
HIV/AIDS is a devastating medical and public health problem in the United States, but recent improvements in HIV/AIDS treatment show great promise. Because of new, potent medication regimens to decrease viral loads and prevent opportunistic infections, HIV infection can be better controlled than ever before, although access to these new drugs remains very restricted in developing countries, due to their prohibitive cost. Both health care providers and community advocates are increasingly moving towards a chronic disease model for the care of HIV-related disease a model similar to the one that guides care for diabetes, asthma, hypertension, and many other medical conditions. In developing countries it is also more and more recognized that HIV/AIDS is not just a terminal situation, but a diverse and fluctuating process, different in each person according to how he manages to deal with it. The emergence of HIV/AIDS as a chronic illness brings with it a need for health education programmes to teach people living with HIV/AIDS (PHAs) to be effective selfmanagers.
Education for selfmanagement can motivate patients to participate actively in their own care, and give them confidence to set and achieve health goals. The Positive SelfManagement Programme (PSMP) teaches people living with chronic HIV infection to do this by giving them the skills and knowledge necessary to collaborate with their health-care providers and implement treatments effectively, as well as the confidence to put their skills and knowledge into practice.
Positive SelfManagement Programme (PSMP) assumptions
PSMP was developed in response to the practical concerns of PHAs and applies selfefficacy theory and the principles of disease selfmanagement to education for PHAs. According to the theory, changes in selfefficacy contribute to changes in health behaviour, attitudes and emotions, all of which influence health status, symptoms, and other health outcomes.
PSMP consists of seven weekly educational sessions. Each PSMP group includes 1015 PHAs under the supervision of two trained leaders, at least one of whom is also HIVpositive. PSMP leaders are not professional trainers, but instead have personal experience in living with HIV or some other chronic disease. PSMP groups meet in community settings that are conveniently located with respect to participants' homes and public transportation.
Selfefficacy concepts are integrated into the PSMP curriculum by key course elements that enhance four types of experience which influence selfefficacy perceptions. These are: performance accomplishments (or personal experiences), vicarious experiences, social or verbal persuasion, and physiological states.
Performance accomplishments are highly influential sources of selfefficacy learning because they provide individuals with direct experiences that are evidence of mastery and skill. "Contracting" (the process of articulating, planning, and achieving specific goals) is a skill taught and reinforced during PSMP to enhance and reinforce a sense of performance accomplishment. It involves a process of naming, planning and achieving specific goals.
Vicarious experiences raise efficacy perceptions by allowing individuals to see others succeeding at important tasks, thereby helping them to learn that they themselves can also succeed.
Persuasion and other forms of social influence can have a positive impact on personal efficacy. To make persuasion work, group leaders doing the persuading must be strong role models, which is the main reason why individuals with HIV/AIDS or another chronic disease were chosen to be group leaders.
Physiological states, generally experienced as physical sensations, influence efficacy because they are a potent form of immediate feedback about any task being attempted.
In addition to enhancing selfefficacy, the PSMP curriculum provides health information and skills for dealing with the problems posed by having HIV/AIDS. PSMP includes basic information on HIV/AIDS, as well as about diet, medications, and safer sex. No attempt is made to be comprehensive in providing information about HIV/AIDS. Instead, participants are encouraged to add to their knowledge continually by seeking out and using information resources available from libraries, service organizations, health-care providers, and the Internet.
Qualitative Evaluation
PSMP had 71 participants; 24 participated in a telephone interview for 30 to 40 minutes. They were representative of the majority of PSMP participants: gay men, mostly white and with health insurance.
Over half of those interviewed identified contracting as the most helpful PSMP activity. The majority were impressed by the connectedness and camaraderie felt among the group members. Many had experience with support groups outside of PSMP and indicated that group support could be a source of motivation and exchanging of ideas. Individuals who were already proactive in the management of their health, found the group process valuable, not only because of the information and support they received, but also because of the opportunity to support, educate, and share experiences with others.
Nearly all the participants identified the resource book, Living Well with HIV & AIDS, as useful for managing their HIV illness. They said it organized and condensed a large and difficult body of material. There were some concerns, however, about the book's limitations regarding health education during on some phases of chronic disease.
Participants enrolling in PSMP began with different skills, and different levels of knowledge about HIV/AIDS. Although all had symptomatic HIV infection, a range of clinical disease was represented. Some pointed to the variation of experiences as a programme strength. Others who considered themselves knowledgeable about HIV/AIDS criticized the programme on the grounds that it too often served the needs of "beginners," at the expense of addressing the needs of those with more knowledge and experience.
Many participants described important changes in their attitudes and healthrelated behaviour as a result of participating in PSMP. Several talked about how the course helped them organize their time and set priorities; some reported changing specific behaviour, such as diet or taking on more personal responsibility for obtaining health information. Finally, several described an overall change in attitude toward their future with HIV/AIDS, leading in turn to longterm behaviour changes.
Discussion
Selfmanagement patient education has become well established in recent years, with regard to chronic diseases, such as asthma, arthritis, hypertension, cardiovascular disease, and diabetes mellitus. PSMP extends this approach to chronic HIV disease, where selfmanagement and selfefficacy principles guide the design of an education programme that PHAs find helpful and even life changing in some cases.
In summary, PSMP represents an effort to develop a theorybased programme combining strengths from support group and health education formats. In so doing, it may become an important group education alternative to the social support groups and educational lectures frequently used by HIV clinical and social service providers. It could become an important educational resource for people receiving comprehensive primary HIV/AIDS care. An issue for ongoing study is how and whether the PSMP can be used successfully in populations different from the predominantly white gay male population studied here. Though the programme was well accepted by the group studied, further work will be needed with intravenous drug users, racial minorities in the US, and other disenfranchised groups. It will also be important to study how programmes based on self-efficacy principles can be applied to developing countries, where (self) management of HIV/AIDS has become extremely important, given the large numbers of people infected and the health system's lack of capacity to provide them with adequate care and support. In addition, controlled studies will be needed that evaluate selfmanagement education approaches in larger populations; such studies should measure programme effects on health, and determine the clinical, behavioural, and psychological factors that mediate changes in outcomes.
Sohini Sengupta, Center for AIDS Prevention Studies, University of California, San Francisco, CA 94105, USA; Tel: 1-415-5978120; Fax: 1-415-5979125; e-mail: ssengupta@psg.ucsf.edu.; and
Allen L. Gifford, Department of Medicine, the University of California, San Diego School of Medicine, La Jolla, CA; and Health Services Research and Development Programme, VA San Diego Healthcare System, San Diego, CA, USA; Tel: 1-619-5528535 ext.7674; Fax: 1-619-5524321; e-mail: agifford@ucsd.edu.
This article was based on the original article which was published in AIDS Care (1999) Vol. 11, no 1, pp 115-130. However, it is a shortened version and additions have been made. |