The evolution of hospice and palliative care in Ethiopia: From historic milestones to future directions

Abstract Introduction: This article reviews the genesis of hospice and palliative care in Ethiopia, examines recent progress, and makes recommendations for the way forward. Result:Although the delivery of palliative care in Ethiopia has shown significant progress over the past two decades, it remains patchy, with the interdisciplinary components of psychological, social and spiritual support lagging behind the primarily medical approach. Discusion: As a pillar of healthcare provision, and in conjunction with health promotion, disease prevention, curative services and rehabilitation, PC awareness and its development should be a high priority Conclusion: More research on the root causes of lack of integrated services for PC and genuine conversation is required [Ethiop. J. Health Dev. 2020; 34(4):310-312] Key words: Palliative care, Ethiopia, life-threatening chronic illness, hospice, end-of-life car

It Takes a Village:Bringing Palliative Care to Ethiopia

In Ethiopia, there is a great need for culturally relevant, sustainable palliative care. Profound poverty and limited health care resources magnify the impact of disease in Ethiopia, one of the poorest countries in the world. The impacts of high burden of disease and poor access to health care include physical suffering, and detrimental economic effects. Thus, the potential for palliative care to improve health care allocation and reduce suffering is substantial. An immediate action could include harnessing the infrastructure of the iddir, which are centuries-old, indigenous neighborhood organizations that provide care and support for families during the time of a death. We propose a model of community-based palliative care instantiated within iddirs, in which they are trained as volunteers to deliver basic palliative care. Shifting the gaze of global health research towards local solutions in Ethiopia may reveal sustainable, effective strategies to improve care for millions in this vulnerable population.</p

Co-design and prototype development of the 'Ayzot App' : a mobile phone based remote monitoring system for palliative care

Background: Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia. Aim: To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia Design: Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019–2020. Phase-1 interviews ( n = 40), Phase-2 focus groups ( n = 3) and interviews ( n = 10). Setting/Participants: Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers. Results: Co-design activities lead to development of the prototype ‘Ayzot’ application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings. Conclusion: This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation

Development of culturally sensitive guidelines for disclosing bad news in palliative care: Ethiopia

Background: Breaking bad news is a difficult task and on occasions, such news is withheld from the patient. This task of disclosing life-threatening illness and poor prognosis requires a full understanding and appreciation of contextual cultural issues. There is scarce evidence of the cultural preferences regarding disclosure of bad news when a patient is diagnosed with life threatening-illness in the Ethiopian context. This study aimed to explores the Ethiopian community cultural preferences on the disclosure of bad news when a family member is diagnosed with a life-threatening disease to develop guidelines for this eventuality. Methods: A qualitative research approach and purposive sampling method were applied. In-depth interviews and observation were employed to collect data from fifty-one participants. In all, twenty-five in-depth interviews and twenty-six observations were undertaken. Field notes were taken during field observations. The study participants were patients, healthcare professionals and community members. Data was transcribed verbatim and analysed by using ATLAS.ti 22. The guideline developed was sent to nine experts and community members for their feedback on its applicability and cultural sensitivity. Findings: Patients with life-threatening-illness disclosed that they prefer full but culturally ensitive medical information regarding their diagnosis of serious illness. Disclosure of poor prognosis should preferably be delivered to the patient family. The religious beliefs, values and rituals of Ethiopian culture are important during the disclosure of news on life-threatening. The respondents identified some advantages of breaking disclosing bad news. Participants submitted that such news should be incremental rather than stunning, amiable, roundabout, sensitive and sympathetic. A six-step, culturally adaptive guideline for breaking negative news was developed and validated. Conclusion: Patients with life threatening-illness should be informed of their medical condition in the presence of family. Disclosure of bad news in such circumstances was perceived as helpful in curtailing expenses and meeting the patients’ needs in palliative care. The patients submitted on their participation in decision on treatments. Cultural values, religious beliefs and preferred approaches should be considered carefully when conveying bad news. The availability of culturally adaptive guidelines could assist healthcare professionals to accommodate the patients’ values, beliefs and preferences when disclosing bad news.Health Studie

Patients’ preferences for delivering bad news in palliative care in Ethiopia: a qualitative study

Abstract Background One of the major challenges for healthcare professionals relates to awareness of patients’ preferences relative to how and when to break bad news and how much information should be disclosed in the eventuality of a serious medical diagnosis or prognosis. On occasions, a serious medical diagnosis or prognosis is withheld from the patient. There is a scarcity of evidence about cultural preferences regarding breaking bad news in the palliative care setting in Ethiopia. Therefore, it is necessary to understand the surrounding cultural issues to properly convey bad news. The purpose of the study was to explore Ethiopian patients’ cultural preferences for receiving bad news in a palliative care setting. Methods A qualitative research approach and nonprobability, purposive sampling method were applied. In-depth interviews were employed to collect data from eight patients who were diagnosed with cancer and cancer with HIV/AIDS during the time of data collection. Thematic analysis was applied to identify themes and subthemes. The data were transcribed verbatim and analysed using ATLAS.ti 22 computer software. Results The following three themes emerged and are reported in this study: (1) Perceptions about life-threatening illness: religious values and rituals are essential for establishing perspectives on life-threatening illnesses and preferences in receiving bad news. (2) Experiences with life-threatening illness: study participants’ experience with the method of breaking bad news was sad, and they were not provided with sufficient details about their medical condition. Making appropriate decisions, fulfilling the ordinance of religious faith, and avoiding unnecessary costs were outlined as benefits of receiving bad news. (3) Preferred ways of breaking bad news; the findings revealed that incremental, amiable and empathic methods for delivering bad news were preferred. It was suggested that the presence of family members is crucial when receiving bad news. Conclusion Patients choose to be told about their medical conditions in the presence of their family. However, the patient’s needs for receiving bad news were unmet. Patients should be involved in the treatment decision process. Delivery of bad news needs to tailor the preferred methods, cultural values, and religious beliefs. Delivering bad news according to the patients’ preferences helps to fulfil their wishes in palliative care

sj-docx-2-pmj-10.1177_02692163231162408 – Supplemental material for Co-design and prototype development of the ‘Ayzot App’: A mobile phone based remote monitoring system for palliative care

Supplemental material, sj-docx-2-pmj-10.1177_02692163231162408 for Co-design and prototype development of the ‘Ayzot App’: A mobile phone based remote monitoring system for palliative care by Nicola Carey, Ephrem Abathun, Roma Maguire, Yohans Wodaje, Catherine Royce and Nicola Ayers in Palliative Medicine</p

sj-pdf-1-pmj-10.1177_02692163231162408 – Supplemental material for Co-design and prototype development of the ‘Ayzot App’: A mobile phone based remote monitoring system for palliative care

Supplemental material, sj-pdf-1-pmj-10.1177_02692163231162408 for Co-design and prototype development of the ‘Ayzot App’: A mobile phone based remote monitoring system for palliative care by Nicola Carey, Ephrem Abathun, Roma Maguire, Yohans Wodaje, Catherine Royce and Nicola Ayers in Palliative Medicine</p