One definition is:

“Self-management is the means by which people can develop confidence and skills to take control of the daily management of their illness. The aim is to achieve the greatest possible quality of life by working with professionals to make the best use of all resources.”

LMCA, Supporting Expert Patients

There are many interventions designed to improve self-management skills. Most of them work by some combination of information provision, learning skills and changing attitudes. The balance between these elements varies but each plays a part:

1. Information

In order to manage life with HIV it is essential to have reliable, relevant and understandable information sources. Given the speed of change in treatments these information sources need to be regularly updated. The information needs of people living with HIV in the UK are well served by organisations such as NAM and THT. Much of this information focuses on things we can do for ourselves or on improving our understanding HIV and its treatment. Both reinforce attitudes supportive of self-management.

2. Skills

Life requires many management skills. These are analogous to those required in the workplace. Skills such as planning, problem solving and time management are all the more important when living with HIV. Juggling hospital appointments and medication regimes make these skills essential. Good communication skills are valuable to anyone but doubly useful if one has to deal with an issue like disclosure. Many of these skills can be taught.

3. Attitudes

Dealing with the emotional, physical and social consequences of living with HIV requires confidence that one can deal with them. This confidence is often lost as a result of the effect of living with HIV but it is possible to regain it.

Developing skills and changing attitudes can be more difficult than providing information. And information will not be used, to best effect, if users lack the skills to use it or the confidence that it will “work for them.” For this reason self-management programmes that concentrate on skills and attitudes are particulary valuable. The Positive Self-Management Programme (PSMP), which originated in work undertaken at Stanford University in the USA, is an example of this type of programme.

Given that the PSMP has strong links to the approach widely used within the Expert Patients Programme (EPP) in Britain the rest of this section will focus on it, however much of what is said about the PSMP will be true for other “self-management” interventions.