What is the preferred place of care at the end of life for HIV/AIDS patients in countries affected by civil war and genocide: the case of Rwanda?

Uwimana, Jeannine; Struthers, Patricia

doi:10.1179/096992608x296950

Cited by 6 publications

(12 citation statements)

References 4 publications

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“…Although the preference to die at home is common to the findings of the PRISMA survey in Europe, a preference for hospital was much higher in Kenya (6.6% across seven European countries) [ 22 ]. It also differs from the results reported by Uwimana and Struthers [ 25 ] in Rwanda, who found that out of 250 people living with HIV/AIDS, 67% indicated they would prefer to be looked after in hospital during the terminal phase of illness, while 26% indicated they would prefer to be looked after at home. Whilst the study in Rwanda was undertaken not long after the civil war in the country and home may not have been seen as a ‘safe environment’, similarities exist in Kenya, following the post election violence in 2009.…”

Section: Discussioncontrasting

confidence: 98%

“…This is in contrast to patients’ preferences and priorities for end-of-life care reported in Rwanda for people living with HIV and AIDS, with 67% of respondents stating that they would prefer to be cared for in hospital at the end-of-life. However, this study was undertaken in the specific context of a country affected by genocide and civil war, where participants reported that they did not have anyone to look after them at home, as many of their family members were lost during the genocide [ 25 ]. Studies looking at the palliative care needs of individuals in Uganda and Kenya, however, support the findings from the European study, suggesting that patients would prefer to be cared for at home [ 7 , 26 - 28 ].…”

Section: Introductionmentioning

confidence: 99%

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Public preferences and priorities for end-of-life care in Kenya: a population-based street survey

Downing

Gomes

Gikaara³

et al. 2014

BMC Palliat Care

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BackgroundEnd-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya.MethodsPopulation-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations.Results201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death.ConclusionThis first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens’ preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home.

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Section: Discussioncontrasting

confidence: 98%

Section: Introductionmentioning

confidence: 99%

Public preferences and priorities for end-of-life care in Kenya: a population-based street survey

Downing

Gomes

Gikaara³

et al. 2014

BMC Palliat Care

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“…Several studies targeted home-based care, with family members as the sole providers of care, giving insight into patients' preferences for place of care and the conditions needed to supply home-based care [22,26,33,34,37,39,56-58]. …”

Section: Resultsmentioning

confidence: 99%

“…A later paper by the same authors in the same study site, focused on terminal AIDS patients' preferred place of care [58]. Whilst the quantitative data showed that 67% of participants preferred hospital care, the qualitative findings attributed this to the lack of home care provision in Rwanda and to patients having lost family members in the 1994 genocide war who would have otherwise taken care of them.…”

Section: Resultsmentioning

confidence: 99%

End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

et al. 2011

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BackgroundEnd of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.MethodsRelevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.ResultsOf the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.ConclusionsThe data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

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“…Tanzania is among the six SSA countries categorized as having “preliminary integration” of its palliative care services, while only one SSA country (Uganda) has reached “advanced integration” of its palliative care services (Lynch et al, 2013). In most regions of the world, the majority of the population would prefer a home death (Gomes et al, 2013); however, in SSA there is some evidence that a hospital death is to be preferred (Downing et al, 2014; Uwimana & Struthers, 2008). There is likely to be better access to morphine and symptom relief at inpatient institutions (Jang & Lazenby, 2013), and there is evidence that hospital-based palliative care teams can also help to enable a home death in SSA, where that is the preferred place for end-of-life care (EoLC) (Desrosiers et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

“We never speak about death.” Healthcare professionals' views on palliative care for inpatients in Tanzania: A qualitative study

et al. 2017

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Despite the fact that all the HCPs interviewed were regularly involved in providing palliative and EoLC, they had received limited formal training in its provision, although they identified such training as a universal requirement. This training gap is likely to be present across much of SSA. Palliative care training, particularly in terms of communication skills, should be comprehensively integrated within undergraduate and postgraduate education. Research is needed to develop culturally appropriate curricula to equip HCPs to manage the complex communication challenges that occur in caring for a diverse inpatient group with palliative care needs.

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What is the preferred place of care at the end of life for HIV/AIDS patients in countries affected by civil war and genocide: the case of Rwanda?

Cited by 6 publications

References 4 publications

Public preferences and priorities for end-of-life care in Kenya: a population-based street survey

Public preferences and priorities for end-of-life care in Kenya: a population-based street survey

End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

“We never speak about death.” Healthcare professionals' views on palliative care for inpatients in Tanzania: A qualitative study

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