Meeting patients' needs

The needs of people living with HIV can be complex, and the challenges they face can be physical, psychological and social. Their needs may also depend on a number of factors, such as whether they are taking HIV treatments, their legal situation, and the existence of other infections or illnesses.

Nurses need to evaluate these needs properly and regularly. But it is important to remember that not all patients will have the same level of need. Some may require limited and very specific interventions, whilst others will be able to meet their needs with the support of other networks and organisations (such as peer groups, patient/user networks, and voluntary organisations). 

The information below will be useful for health workers practicing in all settings, but particularly in those disciplines where HIV-positive people may be more likely to require non-HIV care in the future due to other infections or complications associated with HIV or HIV treatment.

Common problems

The problems experienced by people with HIV can be broken down into four main groups: psychological, physical and physiological, social and economic, and treatment-related. It is important you are aware of these problems and are sensitive to them. Some problems can be solved by a single intervention, while others may require long-term support. For further advice and information, please contact your local HIV clinic or sexual health service.

Psychological

  • Anxiety and depression are frequently reported by people living with HIV, with up to 40% of respondents reporting episodes of depression at least once in the previous year. There can be several reasons for this high number: for example, higher rates of depression are found in men who have sex with men and Africans, two of the groups most affected by HIV. Anxiety can be related to the process and implications of disclosure, particularly at times when successful prosecutions of HIV-positive people are increased, as well as the diagnosis of a severe but chronic health problem like HIV.
  • Some HIV medications have been associated with depression and other related symptoms like sleep problems, including sleeplessness and vivid dreams, as well as recurrences of early depressive symptoms.
  • Lack of self-confidence and unhappiness about physical appearance- HIV drugs can also indirectly cause psychological problems by causing side-effects.
  • Lack of motivation
  • Insomnia caused by physical problems (such as pain, nausea and skin irritations) and stress and anxiety (over issues such as health and illness, relationships and children, money and housing conditions, and of course mortality)

Physical and physiological

  • Loss of appetite or an inability to eat and drink
  • Exhaustion and fatigue - these symptoms can be very frustrating as they are difficult to describe and measure, are not visible but have a huge impact on the ability to carry out other daily activities. It also seems to be poorly understood and acknowledged by health professionals
  • Lack of mobility and physical strength
  • Weight loss

Social and Economic

Despite the successes in treatment, people living with HIV are more likely to be unemployed than HIV-negative people, and a review by the National Aids Trust in 2003 found that one in three people diagnosed with HIV in the UK had experienced severe economic hardship.

  • Money worries
  • Housing problems
  • Frustration at benefits system
  • Discrimination, social isolation, and even abuse
  • Problems with relationships

Treatment-related

  • Coping with the side-effects of medication (which can include nausea and vomiting, digestion problems, mouth and throat problems, loss of appetite and weight)
  • Fitting treatment-taking into daily life at home, at work or when out socialising.
  • Discrimination by health professionals, ranging from poor advice to denial of treatment.

In 2002, a group of researchers investigating the psychosocial impact of anti-HIV combination therapies identified a number of issues, including the disruption it caused to daily living and the fact that the tablets were a visible marker of an HIV infection.

Solutions to HIV problems and needs

Many of the problems and needs that HIV patients have are no different to patients with other chronic conditions who may also experience side-effects with medication, an impact on their physical appearance, deterioration in their psychological well-being, and financial concerns.

What makes HIV unique though is the impact of discrimination and the feeling of social isolation, which some patients will have experienced. By not being aware of the wider needs that HIV patients have and the challenges they face in their daily lives, your practice and communication may come across as being unsympathetic.

Recommended actions

  • Be aware of the needs that people with HIV have and the unique problems they face
  • Know which charities, groups and networks are able to offer additional support
  • Contact your local HIV service for advice on best practice and additional information

Suggested reading

Catalan J, Meadows J, Douzenis A. The changing pattern of mental health problems in HIV infection: the view from London, UK.AIDS Care. 2000 Jun;12(3):333-41.

Chapman L. Body image and HIV: implications for support and care. AIDS Care. 1998 Jun;10 Suppl 2:S179-87

Jenkin P, Koch T, Kralik D. The experience of fatigue for adults living with HIV. J Clin Nurs. 2006 Sep;15(9):1123-31

Henderson M, Safa F, Easterbrook P, Hotopf M. Fatigue among HIV-infected patients in the era of highly active antiretroviral therapy. HIV Med. 2005 Sep;6(5):347-52

Lee K, Solts B, Burns J. Investigating the psychosocial impact of anti-HIV combination therapies. AIDS Care. 2002 Dec;14(6):851-7

Weatherburn P et al. What do you need? Findings from a national survey of people living with HIV. Sigma Research, London (PDF 356KB)  [see How to access PDF files]