Living with HIV requires lifelong adjustments and management. As with many other long-term conditions, self-management approaches can help people living with HIV gain confidence, skills and knowledge to manage their own health better, with resulting improvements in quality of life and independence.
It is important to recognise that the resources required to effectively self-manage will change across the life course. Self-management issues around key life phases and moments, (e.g. diagnosis, commencement of HIV treatment and care, entry and re-entry into the workforce, establishing relationships, sexual debut, pregnancy and having children, coping with loss, ageing, retirement, transitioning from paediatric to adult services will require different strategies and resources and have implications for different services). Access to material and social resources, including for basic needs, will have a significant impact on people’s ability to engage with self-management.
UK health policy encourages an increased focus on self-management. Evidence shows that limited health literacy contributes to suboptimal care, poorer health status of affected people and avoidable costs within health systems. Across a number of long-term medical conditions effective self-management interventions have been shown to help build knowledge and skills among both individuals and groups of service users. Self-management and voluntary sector involvement in care also bring economic benefits to the community and to the health system.
Self-management involves people living with HIV developing an understanding of how their condition affects their lives and how to cope with the clinical, physical, psychological and social challenges it presents. Effective self-management allows people living with HIV to make the many daily decisions that improve their health-related behaviours and outcomes. Building capacity to optimally self-manage includes ways to manage current challenges and also preparedness for future challenges. It is in this area that strong networks of peer support can be particularly beneficial.
Peer support is a relationship in which participants see each other as equal partners and where the focus is on mutual learning and growth. Within NHS services, structured peer support is delivered by trained peer staff or volunteers, in both one-to-one and group settings. Trained peer supporters can model positive and health behaviour, and signpost to services and appropriate information. The focus is on strengths and abilities, motivating and working to achieve agreed goals and improve or maintain quality of life. Peer support is a key contributor to optimising self-management as it not only draws on community resources and expertise but allows people to contribute to communities.
For people living with HIV, self-management can help with at least five interconnected major areas:
Physical health, including HIV-specific issues, comorbidities that may be influenced by HIV, life-stage health issues (such as pregnancy, ageing, puberty), and general health matters
Health promotion and prevention of ill-health
Mental health and well-being, including resilience building and potentially reducing the development and/or exacerbation of emotional distress
Economic inclusion and well-being, including access to financial and employment support
Social inclusion and well-being (with peer support as a key intervention)
Self-management is an important part of comprehensive HIV care because:
People living with HIV are best placed to know and understand their own needs;
It allows people to take greater personal responsibility for their own health and well-being;
Professional resources can be focused where they are most needed.
Services that provide care for people living with HIV should be delivered in a way that supports and facilitates self-management, and encourages staff to operate a strong selfmanagement philosophy. This should include an assessment of individual needs, followed by assistance to access resources (including peer support, interventions and online resources) to develop confidence and competencies for living with HIV. Working with people living with HIV to identify their self-management needs, staff should be able to offer referral to a multidisciplinary range of services, professionals (including occupational therapists, physiotherapists, dietitians and speech and language therapists) and peersupport groups that will most effectively enhance their ability to self-manage. A variety of approaches can be used to help people access (and benefit from) self-management interventions, including telephone, one-to-one, group settings and online programmes.
Identifying ways to enhance service coordination and interdisciplinarity will play a critical part in making services accessible, appropriate and effective. It is important to ensure that models of care ensure equitable access to self-management support for people living with HIV regardless of personal characteristics (see Overarching principles).