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 UgandaReport as inadecuate




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 - Download this document for free, or read online. Document in PDF available to download.

BMC Palliative Care

, 12:35

Palliative care in other conditions conditions

Abstract

BackgroundDespite 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.

MethodsLocal 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.

Results189 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.

ConclusionsThe 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.

KeywordsKenya Uganda HIV Distress Experience Pain Drug availability Qualitative research Electronic supplementary materialThe online version of this article doi:10.1186-1472-684X-12-35 contains supplementary material, which is available to authorized users.

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Author: Lucy Selman - Victoria Simms - Suzanne Penfold - Richard A Powell - Faith Mwangi-Powell - Julia Downing - Nancy Gikaara -

Source: https://link.springer.com/



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