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.
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
These problems were assessed over a
three-day period using a validated questionnaire. This was administered by
Participants were asked to rate the following on
a scale of 0 (worst) to 5 (best):
- Feeling life is worth living.
- Provision of help and advice.
The investigators also assessed family
confidence at giving care, provision of information to families and family
These measures were grouped into three
- 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
- 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 <
“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