Caring for Life-Limiting Illness in Ethiopia: A Mixed-Methods Assessment of Outpatient Palliative Care Needs

Reid, Eleanor; Gudina, Esayas Kebede; Ayers, Nicola; W, Tigineh; Azmera, Yoseph Mamo

doi:10.1089/jpm.2017.0419

Cited by 32 publications

(47 citation statements)

References 29 publications

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“…However, the practice impedes communication and contributes to a delay in obtaining healthcare and a diagnosis, adding to other factors revealed in our data and highlighted in other studies, such as illiteracy, lack of cancer awareness, limited knowledge about cancer, high travel costs to Addis Ababa, and preferences for traditional medicine [14,17,19,50]. Due to unnecessary delays in diagnosis, many patients are diagnosed with an advanced disease that cannot be cured and can only be offered palliative treatment, which makes it additionally difficult for physicians to communicate the prognosis [14,25].…”

Section: Plos Onementioning

confidence: 71%

“…Besides covering travel and treatment costs [6,23], a patient's family plays an important role in decision making and especially in breaking bad news [24]. In Ethiopia, in the case of terminal illness, the disclosure of bad news to patients is discouraged by family members, who often believe that it may lead to unnecessary distress, loss of hope, and worsen their ill relative's condition [25].…”

Section: Introductionmentioning

confidence: 99%

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Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia

Kebede

Abraha²,

Andersson

et al. 2020

PLoS ONE

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Background Cancer is a growing concern in Ethiopia. Though communication is essential for the treatment process, few studies have looked at communication in Ethiopian cancer care. Due to the large number of patients and scarcity of resources, it is vital to understand how to manage consultations in order to effectively help as many patients as possible in this challenging work environment. Thus, research is needed to analyze and understand the communicative challenges experienced by physicians, patients, and family caregivers, in order to successfully handle patient care in practice. Objective We explore communication in Ethiopian cancer care and present the main challenges faced by physicians, patients, and family caregivers. Methods This explorative qualitative study was conducted at the Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa, Ethiopia. A triangulation of data collection methods was used: 91 audio-recorded, semi-structured interviews and 21 video-recordings of authentic interactions during hospital rounds. The aim was to obtain as complete a picture as possible of communication from the perspectives of physicians, patients, and family caregivers. The interviews were analyzed using thematic content analysis and the identified themes were supported by excerpts from the transcribed recordings.

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Section: Plos Onementioning

confidence: 71%

Section: Introductionmentioning

confidence: 99%

Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia

Kebede

Abraha²,

Andersson

et al. 2020

PLoS ONE

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“…A large additional literature base was identified in the scoping review that confirms these findings, emphasizing PC preferences relating to the needs of populations ( Harding and Higginson, 2004 ; Barnard, 2006 ; Harding et al , 2008 ; Selman et al , 2009 ; Alsirafy et al , 2010 ; Gysels et al , 2011 ; Harding et al , 2013a ; Powell et al , 2013 ; Powell et al , 2014 ; van Niekerk and Raubenheimer, 2014 ; Selman et al , 2015 ; Luyirika et al , 2016 ; Chisumpa et al , 2017 ; Kimani et al , 2018 ; Lewis et al , 2018 ; Reid et al , 2018 ). Although these do not address the integration of PC specifically, they support PC integration by guiding what type of PC is needed and preferred by a population.…”

Section: Resultsmentioning

confidence: 88%

“…Despite this, Rhee et al (2017a ) showed that 16 of the African countries they assessed had no identifiable PC service at the time. There is therefore a major need to improve access to PC in LMICs ( Powell et al , 2013 ; Reid et al , 2018 ), which characteristically balance the need for PC against limited resources and high burdens of death from communicable and non-communicable diseases (NCDs) ( Grant et al , 2011b ). Following World Health Organization (WHO) estimates that 1% of a population require PC, ∼10 million people in Africa need PC annually ( African Palliative Care Association, 2018 ).…”

Section: Introductionmentioning

confidence: 99%

Approaches to integrating palliative care into African health systems: a qualitative systematic review

Court

Olivier

2020

Health Policy and Planning

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Africa is characterized by a high burden of disease and health system deficits, with an overwhelming and increasing demand for palliative care (PC). Yet only one African country is currently considered to have advanced integration of palliative care into medical services and generalized PC is said to be available in only a handful of others. The integration of PC into all levels of a health system has been called for to increase access to PC and to strengthen health systems. Contextually appropriate evidence to guide integration is vital yet limited. This qualitative systematic review analyses interventions to integrate PC into African health systems to provide insight into the ‘how’ of PC integration. Forty articles were identified, describing 51 different interventions. This study found that a variety of integration models are being applied, with limited best practices being evaluated and repeated in other contexts. Interventions typically focused on integrating specialized PC services into individual or multiple health facilities, with only a few examples of PC integrated at a population level. Four identified issues could either promote integration (by being present) or block integration (by their absence). These include the provision of PC at all levels of the health system alongside curative care; the development and presence of sustainable partnerships; health systems and workers that can support integration; and lastly, placing the client, their family and community at the centre of integration. These echo the broader literature on integration of health services generally. There is currently a strong suggestion that the integration of PC contributes to health system strengthening; however, this is not well evidenced in the literature and future interventions would benefit from placing health systems strengthening at the forefront, as well as situating their work within the context of integration of health services more generally.

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“…Inability to fulfil social roles Decreasing support systems 36 Childcare 36,56,66 Need for support with shopping 77 Practical support with care when bedridden 36,48,77 Planning for children after their own death 37,43,56,69 Relief/Respite from and support in caring 32,36,45,48,58,60,61,76,80,82,85 Feeling overwhelmed and Needing a break 45,[58][59][60]67,87 Taking time off school and work 36,43,45,60,66,82 Practical support in providing personal care where culturally inappropriate 79 Restricted ambitions 60 Managing fragmented care coordination 87 Clinical supplies for care 63,75,85…”

Section: Practical Support Needsmentioning

confidence: 99%

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

et al. 2021

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Background: Clarity on what constitutes a palliative care need is essential to ensure that health systems and clinical services deliver an appropriate response within Universal Health Coverage. Aim: To synthesise primary evidence from Africa for palliative care needs among patients and families with serious illness. Design: We conducted a mixed methods systematic review with sequential synthesis design. The protocol was registered with PROSPERO (CRD42019136606) and included studies were quality assessed using Mixed Method Appraisal Tool. Data sources: Six global literature databases and Three Africa-specific databases were searched up to October 2020 for terms related to palliative care, serious illnesses and Africa. Palliative care need was defined as multidimensional problems, symptoms, distress and concerns which can benefit from palliative care. Results: Of 7810 papers screened, 159 papers met eligibility criteria. Palliative care needs were mostly described amongst patients with HIV/AIDS ( n = 99 studies) or cancer ( n = 59), from East ( n = 72) and Southern ( n = 89) Africa. Context-specific palliative care needs included managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children’s school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual). Conclusions: Palliative care assessment and care must reflect the context-driven specific needs of patients and families in Africa, in line with the novel framework. Health literacy is a crucial need in this context that must be met to ensure that the benefits of palliative care can be achieved at the patient-level.

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Caring for Life-Limiting Illness in Ethiopia: A Mixed-Methods Assessment of Outpatient Palliative Care Needs

Abstract: There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to psychosocial distress and financial crisis in this Ethiopian population.

Cited by 32 publications

References 29 publications

Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia

Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia

Approaches to integrating palliative care into African health systems: a qualitative systematic review

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

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