'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

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.

Gender Differences and Psychosocial Factors Associated with Quality of Life Among ART Initiators in Oromia, Ethiopia

“…The observed association between psychological distress and HRQoL is consistent with prior research from the region [39]. Although the cause of psychological distress is beyond the scope of this study, the availability of ongoing counseling services to PLWHA has been shown to help mitigate the trauma or other psychological effects that may result from receiving an HIV diagnosis, navigating complex drug regimens, or isolation caused by stigma [40, 41]. Our findings that persons who initiated treatment late (CD4+ count <150 cells/µL or WHO stage 4) had lower HAT-QoL scores than those with less advanced disease were also consistent with studies performed in other resource-limited settings that showed a strong correlation between clinical indicators and HRQoL [2, 12].…”

Patient-reported barriers and facilitators to antiretroviral adherence in sub-Saharan Africa

“…Studies were conducted in 24 countries in SSA with six studies including more than one country [45,64,84,95,124,130]. More than half the studies (59.7%) were conducted across South Africa, Uganda, Ethiopia and Kenya.…”

“…Just over half of the qualitative studies conducted semi-structured in-depth interviews (IDIs) (49; 56.3%) [17,20–22,26,27,29,32–37,39–43,45–47,49,51,54–60,62,63,65–67,69–71,78,81,84,85,87–90,95–97,165] with their HIV-positive participants. Eighteen studies (20.7%) used focus group discussions (FDGs) [19,23–25,28,50,53,61,68,73,74,76,77,82,94,98,167,169], 16 used both IDIs and FDGs (18.4%) [18,30,31,38,44,52,64,72,75,79,83,86,92,93,99,170], one used free attitude interviews (FAIs) and FGDs (1.1%) [80], one used group sessions without more detail [168], one used IDIs and life history and illness narratives [48] and one used digital stories [91].…”

Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004–2012

“…We also introduced Saunders's theory of "total pain" to appreciate problems from a patient-centered view (1). This was represented as P 2 S 2 , reflecting: physical, psycho-emotional, social, and spiritual or belief system to describe what we named "the 4-quadrant approach" to understanding PLWH needs (43). Use of these palliative constructs encouraged a systematic approach to patients.…”