People with HIV receiving palliative care have high levels of physical and psychological problems, according to the results of a study conducted in sub-Saharan Africa and published in Sexually Transmitted Infections. Several problems were worse for people who were receiving their care at home.
“Better attention is required to effectively manage problems at home,” write the authors.
In 2009, in Sub-Saharan Africa, there were an estimated 22.5 million HIV infections in the region and 1.2 million HIV-related deaths.
The World Health Organization (WHO) has identified palliative care as an essential component of care for people with HIV from the moment of diagnosis to the time of death.
Previous research has shown that palliative care is effective in the management of multiple problems in people with HIV, including pain, symptoms and anxiety. However, this research has been conducted in richer countries and little is known about the palliative care needs of people with HIV in sub-Saharan Africa.
An international team of investigators therefore undertook a study involving 230 participants, who were provided with palliative care by five centres in South Africa and Uganda. They wished to assess the intensity of the physical, psychological and social/spiritual problems experienced by the participants and the factors associated with problem severity.
These problems were assessed over a three-day period using a validated questionnaire. This was administered by clinical staff.
Participants were asked to rate the following on a scale of 0 (worst) to 5 (best):
- Pain.
- Symptoms.
- Worry.
- Sharing feelings.
- Feeling life is worth living.
- Feeling of peace.
- Provision of help and advice.
The investigators also assessed family confidence at giving care, provision of information to families and family worry.
These measures were grouped into three broad areas:
- Physical and psychological problems (pain, symptoms and worry).
- Interpersonal (help and advice to the family for planning for the future, and patient ability to share feelings).
- Existential and spiritual (feeling life was worthwhile and feeling at peace).
Most of the participants (71%) were women and the mean age was 37 years. Two-thirds of participants were cared for at home and the mean duration of care was 46 weeks. Over half (56%) of participants were taking antiretroviral therapy. Information on CD4 cell count was available for just 59% of individuals.
The most severe problems reported by participants were pain, worry, symptoms and lack of information to plan for the future (mean scores = 1.82, 1.87, 2.11 and 2.11 respectively).
Being cared for at home was associated with lower physical and psychological scores (p = 0.005). However, these scores were significantly higher for people who were taking HIV therapy (p = 0.005) and those who had been in care for longer (p = 0.009).
Existential and spiritual scores were poorer for individuals cared for at home (p < 0.001), but longer duration of care was associated with higher scores (p < 0.001).
“Time under palliative care does indeed lead to a measurable improvement across all dimensions,” comment the investigators, who believe their findings “build significantly on the existing pain literature to give a greater understanding of patient wellbeing and clinical need”.
Harding R et al. Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa. Sex Transm Infect, online edition. DOI: 10.1136/sextrans-2011-050460, 2012.