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Open Access Research article

'My dreams are shuttered down and it hurts lots’–a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda

Lucy Selman1*, Victoria Simms1, Suzanne Penfold1, Richard A Powell23, Faith Mwangi-Powell4, Julia Downing3, Nancy Gikaara5, Grace Munene3, Irene J Higginson1 and Richard Harding1

Author Affiliations

1 King’s College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, Bessemer Road, London SE5 9PJ, UK

2 HealthCare Chaplaincy, 307 East 60th Street, New York, NY 10022, USA

3 Formerly of the African Palliative Care Association, PO Box 72518, Kampala, Uganda

4 International Palliative Care Initiative, Open Society Foundations, 400 West 59th Street, New York, NY 10019, USA

5 Kenya Hospices and Palliative Care Association, P.O Box 20854, 00202, Nairobi, Kenya

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BMC Palliative Care 2013, 12:35  doi:10.1186/1472-684X-12-35

Published: 7 October 2013

Abstract

Background

Despite the huge burden of HIV in sub-Saharan Africa, there is little evidence of the multidimensional needs of patients with HIV infection to inform the person-centred care across physical, psychological, social and spiritual domains stipulated in policy guidance. We aimed to describe the problems experienced by people with HIV in Kenya and Uganda and the management of these problems by HIV outpatient services.

Methods

Local researchers conducted in depth qualitative interviews with HIV patients, caregivers and service staff at 12 HIV outpatient facilities (6 in Kenya, 6 in Uganda). Interview data were analysed thematically.

Results

189 people were interviewed (83 patients, 47 caregivers, 59 staff). The impact of pain and symptoms and their causes (HIV, comorbidities, treatment side-effects) were described. Staff reported that effective pain relief was not always available, particularly in Kenya. Psychosocial distress (isolation, loneliness, worry) was exacerbated by stigma and poverty, and detrimentally affected adherence. Illness led to despair and hopelessness. Provision of counselling was reported, but spiritual support appeared to be less common. Neither pain nor psychosocial problems were routinely reported to service staff. Collaboration with local hospices and income-generation activities for patients were highlighted as useful.

Conclusions

The findings demonstrate the multiple and interrelated problems associated with living with HIV and how psychosocial and spiritual distress can contribute to 'total pain’ in this population. In line with the palliative care approach, HIV care requires holistic care and assessment that take into account psychological, socioeconomic and spiritual distress alongside improved access to pain-relieving drugs, including opioids.

Keywords:
Kenya; Uganda; HIV; Distress; Experience; Pain; Drug availability; Qualitative research