Background
Globally,
the majority of people with HIV/AIDS live in sub-Saharan Africa. While the
increasing availability of antiretroviral therapy is improving the outlook for
many, its effects are yet to reach all of those in need and patients still
present with advanced disease. This paper reports findings from qualitative
interviews with patients living with AIDS and their caregivers who were
receiving palliative care from Hospice Africa Uganda (HAU). We aimed to
understand what motivated patients and their families to seek formal
healthcare, whether there were any barriers to help- seeking and how the help
and support provided to them by HAU was perceived.
Methods
We
invited patients with AIDS and their relatives who were newly referred to HAU
to participate in qualitative interviews. Patients and carers were interviewed
in their homes approximately four weeks after the patient’s enrolment at HAU.
Interviews were translated, transcribed and analysed using narrative and
thematic approaches.
Results
Interviews
were completed with 22 patients (10 women and 12 men) and 20 family caregivers,
nominated by patients. Interviews revealed the extent of suffering patients
endured and the strain that family caregivers experienced before help was
sought or accessed. Patients reported a wide range of severe physical symptoms.
Patients and their relatives reported worries about the disclosure of the AIDS
diagnosis and fear of stigma. Profound poverty framed all accounts. Poverty and
stigma were, depending on the patient and family situation, both motivators and
barriers to help seeking behaviour. Hospice services were perceived to provide
essential relief of pain and symptoms, as well as providing rehabilitative
support and a sense of caring. The hospice was perceived relieve utter
destitution, although it was unable to meet all the expectations that patients
had.
Conclusion
Hospice
care was highly valued and perceived to effectively manage problems such as
pain and other symptoms and to provide rehabilitation. Participants noted a
strong sense of being “cared for”. However, poverty and a sense of stigma were
widespread. Further research is needed to understand how poverty and stigma can
be effectively managed in hospice care for patients for advanced AIDS and their
families.
Full article at: http://goo.gl/lOsj9X
1Kabarak University, School of Medicine and
Health Sciences, P O Private Bag-20157 Kabarak, Nakuru, Kenya
2School of Health Sciences, University of
Nottingham, Queen’s Medical Centre, Derby Road, Nottingham NG7 2UH, UK
3The Cicely Saunders Institute, Bessemer
Road, Kings College, London SE5 9PJ, UK
More at: https://twitter.com/hiv_insight
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