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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:
1.
Physical and psychological problems
(pain, symptoms and worry).
2.
Interpersonal (help and advice to the
family for planning for the future, and patient ability to share feelings).
3.
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”.
The Friends of AIDS Foundation is
dedicated to enhancing the quality of life for HIV positive individuals and
empowering people to make healthy choices to prevent the spread of the HIV
virus. To learn more about The Friends of AIDS Foundation, please visit: http://www.friendsofaids.org.
TOGETHER WE REMAIN STRONG!
