Palliative Care Research in Africa: Consensus Building for a Prioritized Agenda

Powell, Richard A.; Harding, Richard; Namisango, Eve; Katabira, Elly; Gwyther, Liz; Radbruch, Lukas; Murray, Scott A; El-Ansary, Maged; Leng, Mhoira; Ajayi, IkeOluwapo O.; Blanchard, Charmaine; Kariuki, Helen; Kasirye, Ivy; Namukwaya, Elizabeth; Gafer, Nahla; Casarett, David; Atieno, Mackuline; Mwangi-Powell, Faith

doi:10.1016/j.jpainsymman.2013.03.022

Cited by 37 publications

(41 citation statements)

References 27 publications

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“…The data extracted from the ten included studies [15,21,[43][44][45][46][47][48][49][50] are presented in Appendix. The largest group to shape the research priorities were academic, commissioners and healthcare professionals (HCPs) and these were included in eight of the ten studies [15, 21, 43-45, 47, 49, 50].…”

Section: Overviewmentioning

confidence: 99%

“…However, these were the only studies in which patients shaped the research priorities. Six of the studies included researchers [15, 43-45, 49, 50], two included researcher/clinicians [43,50], one included members of the public [15] and two included palliative care volunteers [15,43]. Details on the sample sizes for each participant group can be found in Appendix.…”

Section: Overviewmentioning

confidence: 99%

“…Three of studies were based in the United Kingdom [44, 47,48], while one was conducted in both the United Kingdom and Ireland [20]. Each of the remaining five studies geographical location were conducted in New Zealand [21], United States [49], Canada [43], Australia [45] and Africa [50] respectively.…”

Section: Overviewmentioning

confidence: 99%

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International palliative care research priorities: A systematic review

Hasson¹,

Nicholson

Muldrew³

et al. 2020

BMC Palliat Care

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Background: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework. Methods: A systematic review of several academic and grey databases were searched from January 2008-June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis. Results: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas. Conclusions: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.

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Section: Overviewmentioning

confidence: 99%

Section: Overviewmentioning

confidence: 99%

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International palliative care research priorities: A systematic review

Hasson¹,

Nicholson

Muldrew³

et al. 2020

BMC Palliat Care

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“…Fourth, palliative and NCD care must be underpinned by rigorous and locally relevant research demonstrating appropriate, feasible and effective care,30 31 as an integral part of the public health palliative care strategy 32…”

Section: Out Of the Shadows: Ncds And Palliative Care In Africamentioning

confidence: 99%

Out of the shadows: non-communicable diseases and palliative care in Africa

Powell¹,

Ali²,

Luyirika

et al. 2015

BMJ Support Palliat Care

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Non-communicable diseases (NCDs) in Africa have been comparatively neglected, partly due to donor-driven funding priorities. This is despite NCDs being the principal cause of mortality globally, with the majority incidence occurring in low-income and middle-income nations. Most of the patients with NCDs will suffer from pain, breathlessness and other physical symptoms, or need support with psychosocial or spiritual problems. Reflecting regional disease prevalence, late-stage clinical presentation, limited funding and restricted access to curative therapies, palliative care need in Africa is significantly high. Although palliative care provision has advanced significantly on the continent in the past decade, much of this development was driven by services for adult HIV patients. However, recent international and regional political declarations and commitments constitute a new global NCD agenda that calls for the integration of palliative care into the NCD response. This could be achieved under a chronic care model of service provision in partnership with other clinical providers in an integrated care continuum spanning prevention, early detection, diagnosis, treatment, survivorship and the end of life. Four important challenges have to be addressed if palliative care is to contribute meaningfully to this NCD agenda: (1) existing variation in the ability of countries to deal with NCDs per se; (2) ensuring clinical partners are integrated effectively with palliative care; (3) agreeing implementation is linked to relevant national-level and patient-level metrics; and (iv) underpinning palliative care and NCD care with a rigorous and locally relevant evidence base demonstrating appropriate, feasible and effective care.

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“…The key achievements of the meeting included the development of conceptual notes to conduct research for seven priority research questions, as outlined in the research agenda for palliative care in Africa [3]. The aim of the workshop was to discuss the status of palliative care research in Africa and to share effective strategies for generating and using research evidence in advancing the palliative care agenda on the continent and to continue building capacity for research, in order to sustain a vibrant research culture in Africa.…”

Section: Introductionmentioning

confidence: 99%

ecancermedicalscience

Downing

Namisango²,

Kiyange³

et al.

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The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17–20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, ‘The Net Effect: Spanning Diseases, Crossing Borders’, reflected this joint vision and the drive to remember the ‘net effect’ of our work in palliative care—that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten ‘C’s of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can ‘span diseases,’ ‘cross borders,’ and realise the ‘African Dream’ for palliative care.

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Palliative Care Research in Africa: Consensus Building for a Prioritized Agenda

Cited by 37 publications

References 27 publications

International palliative care research priorities: A systematic review

International palliative care research priorities: A systematic review

Out of the shadows: non-communicable diseases and palliative care in Africa

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