Care
There is no simple definition of social care.
It is individual and takes a variety of forms including social, psychological, or health care. Most people with HIV in Scotland live a reasonably normal day-to-day life. There may be specific circumstances, however, when someone needs extra support for daily living –
- Unemployment and poverty
- Mental health problems
- Disability and exclusion
- Stigma and discrimination
Scotland’s voluntary HIV organisations play a vital role in care provision alongside advice agencies and local authorities. Care support includes –
- Self-management or being ‘in the driving seat’. A well evaluated self-management programme is the Stanford Positive Self-Management Program for HIV. This has been adopted by several HIV organisations as a programme to help individuals take control of their own care. Self-management support is available from the LTCAS.
- Peer support in treatment adherence, positive role-modelling, and advocacy is found by some to be a support at critical points in life, and especially as part of a formal programme
- Practical support may also be needed, sometimes not related to HIV but made more difficult due to the impact of HIV and treatment demands on daily life
- Psychological support of a more intensive nature is available through HIV counselling clinics See service finder and if not available in a local area, then by referral. Less intensive ‘talking therapies’, support and buddying can get someone through a period when coping emotionally is difficult. See BPS Faculty Sexual Health & HIV
HIV in itself places additional stresses on the human body. With newer drugs and more choice, HIV treatments are much easier to tolerate but can have serious side effects. Although generally these are not long lasting, they contribute generally to the need for additional support and care.
Other contributory factors include –
- Stigma and discrimination – whilst the outlook for people living with HIV in the UK is much improved, stigma is often experienced by positive people. Being singled out as ‘different’, shamed, or discriminated against are the result of internal prejudice. Legal protection exists not only against HIV-related discrimination, but also on the grounds of gender, age, race, sexuality, and disability. It is illegal to discriminate on these grounds, and services and workers are required by law to treat people fairly and equally. See Stigma and Stigma Index.
- Ageing – not only the physical effects of ageing but also the effect of HIV itself contribute to care needs. A recent report by the Terrence Higgins Trust and the Joseph Rowntree Foundation found that people with HIV over 50 reported twice as many long-term health problems, difficulties with everyday tasks, were less economically active, and had serious financial worries. Information and support is available – Care Info Scotland and see service finder
- Terminal illness and bereavement – although people on average live longer with HIV than previously, life expectancy is shorter than for people who are HIV negative. For this reason people may need palliative care and bereavement support.