Eve Namisango, Katherine Bristowe, Fliss Em Murtagh, Julia Downing, Richard A Powell, Mackuline Atieno, Melanie Abas, Zipporah Ali, Emmanuel Bk Luyirika, Michelle Meiring, Faith N Mwangi-Powell, Irene J Higginson, Richard Harding Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries
Kennedy Bashan Nkhoma, Bassey Ebenso, David Akeju, Samuel Adejoh, Michael Bennett, Mike Chirenje, Adlight Dandadzi, Elizabeth Nabirye, Elizabeth Namukwaya, Eve Namisango, Kehinde Okunade, Omolola Salako, Richard Harding & Matthew J. Allsop Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe
Mary Goombs, Kenneth Mah, Richard Powell, Faith N. Mwangi-Powell, Emmanuel Luyirika, Eve Namisango, Sarah Hales, Kayla Wolofsky, Lesley Chalklin, Camilla Zimmermann Quality of Dying and Death in Advanced Cancer in Ontario, Canada, and sub-Saharan Africa
Kelly K. O’Brien, Mendwas Dzingina, Richard Harding, Wei Gao, Eve Namisango, Lisa Avery and Aileen M. Davis Developing a short‑form version of the HIV Disability Questionnaire (SF‑HDQ) for use in clinical practice: a Rasch analysis
Prof Dr Anne Merriman Eve Namisango, Dr Eddie Mwebesa, Fatia Kiyange, Dr Emmanuel Luyirika, THE STATE OF PALLIATIVE CARE IN AFRICA 2016. Submitted to Cancer:
Namisango E, Ntege C, Kiyange F, Luyirka E Allosp M. Strengthening pharmaceutical systems for palliative care services in resource limited settings: piloting a mHealth application across a rural and urban setting in Uganda- 2016 http://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-016-0092-9
Rawlinson, Fm ; Gwyther, L ; Kiyange, F ; Luyirika, E ; Meiring, M ; Downing, J The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients. ecancer 8 492 / DOI: 10.3332/ecancer.2014.492 current-situation-in-education-and-training-of-health-care-professionals-across-africa-to-optimise-the-delivery-of-palliative-care-for-cancer-patients.php
FM Rawlinson E Luyirika Collaboration across continents to produce e-learning for palliative care education in Sub Saharan Africa. ecancer 8 ed36 / DOI: 10.3332/ecancer.2014.ed36 http://ecancer.org/journal/editorial/36-collaboration-across-continents-to-produce-e-learning-for-palliative-care-education-in-sub-saharan-africa.php
Fatia Kiyange: Social work in palliative care in Africa: Progress in Palliative Care: Science and the Art of Caring. Volume 18, Issue 4, 2010
Harding R, Powell RA, Kiyange F, Downing J, Mwangi-Powell F. Provision of pain- and symptom-relieving drugs for HIV/AIDS in sub-Saharan Africa. J Pain Symptom Manage.doi: 10.1016/j.jpainsymman.2009. http://www.ncbi.nlm.nih.gov/pubmed/20685071
Powell RA, Downing J, Harding R, Mwangi-Powell F & Connor S on behalf of the APCA M&E Group. Development of the APCA African Palliative Outcome Scale. Journal of Pain and Symptom Management, 2007 http://www.ncbi.nlm.nih.gov/pubmed/17280929
Harding R, Gwyther L, Powell FM. Treating HIV/AIDS patients until the end of life. J Acquir Immune Defic Syndr. 2007 http://www.ncbi.nlm.nih.gov/pubmed/17327759
Namisango E, Katabira E, Karamagi C, Baguma P. Validation of the Missoula-Vitas Quality-of-Life Index among patients with advanced AIDS in urban Kampala, Uganda. J Pain Symptom Manage. 2007 Feb;33(2):189-202. http://www.ncbi.nlm.nih.gov/pubmed/17280924
Harding R, Powell RA, Downing J, Connor S, Mwangi-Powell F, Defilippi K, Cameron S, Garanganga E, Kikule E & Alexander C. Generating an African palliative care evidence base: The context, need, challenges and strategies. Journal of Pain and Symptom Management, 2008. http://www.ncbi.nlm.nih.gov/pubmed/?term=Harding+R%2C+Powell+RA%2C+Downing+J%2
Powell RA, Downing J, Radbruch L, Mwangi-Powell FN & Harding R. Advancing palliative care research in Africa: From Venice to Nairobi and beyond. Palliative Medicine 2008. http://www.ncbi.nlm.nih.gov/pubmed/?term=Powell+RA%2C+Downing+J%2C+Radbruch+L%
Powell RA & Mwangi-Powell FN. Improving palliative care in Africa: Selection, training, and retention of community-based volunteers is a priority. British Medical Journal 2008
Downing J, Atieno M, Powell RA, Mwangi-Powell F. The development of the APCA African Children’s Palliative Outcome Scale. International Children’s Palliative Care Network: Network News, 2009
Selman L, Higginson IJ, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll AP, Mpanga Sebuyira L, Panjatovic B, HARDING R. Meeting information needs of patients with incurable disease and their families in South Africa and Uganda: Multicentre qualitative study. British Medical Journal. 2009
Powell RA, Downing J, Ddungu H & Mwangi-Powell FN (2009) Pain history and pain assessment, pp.54-68. In: Patel NB & Kopf A (Eds.) Manual on Pain Management in Low-Resource Settings. Seattle, USA: International Association for the Study of Pain
Mwangi-Powell FN, Downing J, Ddungu H, Kiyange F, Powell RA & Baguma A (2010) Palliative care in Africa. In: Ferrell BR & Coyle N (Eds.) Textbook of Palliative Nursing, 3rd Edition. New York: Oxford University Press
Downing J, Mwangi-Powell F & Powell RA. Home-based palliative care in sub-Saharan Africa. Home Healthcare Nurse 2010 http://www.researchgate.net/publication/44593100_Home-based_palliative_care_in_sub-Saharan_Africa
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Mpanga Sebuyira L, Panjatovic B, Higginson IJ. Validation of a core outcome measure for palliative care in Africa: The APCA African Palliative Outcome Scale. Health and Quality of Life Outcomes. 2010 http://www.hqlo.com/content/8/1/10
Harding R, Mwangi-Powell FN, Gwyther L, Dinat N, Powell RA. Brief Global Reports – How can we improve palliative care patient outcomes in low and middle income countries? Successful research approaches in sub-Saharan Africa. Journal of Pain and Symptom Management, 2010 http://www.ncbi.nlm.nih.gov/pubmed/20619209
Harding R, Simms V, Penfold S, McCrone P, Moreland S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Fayers P, Curtis S, Higginson IJ. Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: Study protocol. BMC Public Health. 2010 http://www.ncbi.nlm.nih.gov/pubmed/20920241
Mwangi-Powell F, Powell RA & Downing J. Palliative care: Why is it important in the HIV and AIDS response? OPENSPACE, 2010
Selman LE, Higginson IJ, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Ikin B, Harding R. Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study. 2011 Health Qual Life Outcomes. doi: 10.1186/ http://www.ncbi.nlm.nih.gov/pubmed/21477274
Selman L, Siegert RJ, Higginson IJ, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Ikin B, Harding R. The MVQOLI successfully captured quality of life in African palliative care: a factor analysis. Journal of Clinical Epidemiology. doi: 10.1016/j.jclinepi.2010.12.013. http://www.ncbi.nlm.nih.gov/pubmed/21474280
Powell RA, Mwangi-Powell FN, Kiyange F, Radbruch L, Harding R. Palliative care development in Africa: How we can provide enough quality care? BMJ Supportive and Palliative Care, 2011 1 http://spcare.bmj.com/content/1/2/113.extract
Bausewein C, Simon ST, Benalia H, Downing J, Mwangi-Powell FN, Daveson BA, Harding R1, Higginson IJ, andPRISMA. Implementing patient reported outcome measures (PROMs) in palliative care - users' cry for help. Health and Quality of Life Outcomes 2011, 9:27 doi:10.1186 http://www.hqlo.com/content/9/1/27
Downing J, Atieno M, Powell RA, Ali Z, Marston J, Meiring M, Ssengooba J, Williams S, Mwangi-Powell FN, Harding R and the APCA AIDSTAR Project Advisory Group. A palliative care outcome measure for children in sub-Saharan Africa: Early development findings. European Journal of Palliative Care. 2012
Downing J, Gikaara N, Gomes B, Daveson BA, Higginson IJ, Harding R. Public opinion on preferences and priorities for end-of-life care in sub-Saharan Africa: piloting a novel method of street surveying. BMJ Supportive & Palliative Care 2012
http://www.ncbi.nlm.nih.gov/pubmed/24529217
Downing J, Ojing M, Powell RA, Ali Z, Marston J, Meiring M, Ssengooba J, Williams S, Mwangi-Powell F, Harding R. A palliative care outcome measure for children in sub-Saharan Africa: Early development findings. European Journal of Palliative Care 2012
Downing J, Simon ST, Mwangi-Powell FN, Benalia H, Daveson BA,Higginson IJ, Harding R, Bausewein C, Project PRISMA. Outcomes 'Out of Africa': the selection and implementation of outcome measures for palliative care in Africa. BMC Palliative Care 2012
http://www.biomedcentral.com/1472-684X/11/1
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gao W, Gwyther L, Mashao T, Mmoledi K, Moll A, Sebuyira LM, Ikin B, Higginson IJ. Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa. Sexually Transmitted Infections 2012 http://www.ncbi.nlm.nih.gov/pubmed/22896679
Namisango E, Harding R, Atuhaire L, Ddungu H, Katabira E, Muwanika FR, Powell RA. Pain among ambulatory HIV/AIDS patients: Multicentre study of prevalence, intensity, associated factors and effect. Journal of Pain. 2012 http://www.ncbi.nlm.nih.gov/pubmed/?term=Namisango+E%2C+HARDING+R%2C+Atuhaire+L%2C+
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Ikin B, Higginson IJ. Prevalence, burden, and correlates of physical and psychological symptoms among HIV palliative care patients in sub-Saharan Africa: an international multicenter study. Journal of Pain Symptom Management. 2012 http://www.ncbi.nlm.nih.gov/pubmed/22658471
Eve Namisango, Richard A Powell. The 7th World Research Congress of the EAPC: through the lens of an early African researcher. European Journal of Palliative Care, 201 http://www.eapcnet.eu/LinkClick.aspx?fileticket=nOLqt1pj92U%3D&tabid...
Harding R, Selman L, Agupio G, Dinat N, Downing J, Gao W, Gwyther L, Mashao T, Mmoledi K, Moll A, Mpanga Sebuyira L, Ikin B, Higginson IJ. Intensity and correlates of multidimensional problems in HIV patients receiving integrated palliative care in sub-Saharan Africa. Sex Transm Infect. 2012. doi: 10.1136/sextrans-2011-050460. http://www.ncbi.nlm.nih.gov/pubmed/22896679
Downing J, Simon ST, Mwangi-Powell FN, Benalia H, Daveson BA, HigginsonIJ, Harding R, Bausewein C and Project PRISMA BMC palliative care . Outcomes 'out of Africa': the selection and implementation of outcome measures for palliative care in Africa. BMC Palliative Care 2012, doi:10.1186/1472-684X-11-1 http://www.biomedcentral.com/1472-684X/11/1
Namisango E, Powell RA, Kariuki H, Harding R, Luyirika E, Mwangi-Powell F. Palliative Care Research in Eastern Africa. European Journal of Palliative Care. 2013
Selman L, Simms V, Penfold S, Powell RA, Mwangi-Powell F, Downing J, Gikaara N, Munene G, Higginson IJ, Harding R. '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. BMC Palliative Care. 2013 http://www.biomedcentral.com/1472-684X/12/35
Namisango E, Harding R. Is symptom burden associated with treatment status and disease stage among adult HIV outpatients in East Africa? Palliative Medicine. 2013. doi: 10.1089/jpm.2013.0291. http://www.ncbi.nlm.nih.gov/pubmed/24359205
Harding R, Simms V, Penfold S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Gikaara N, Atieno M, Kataike J, Nsubuga C, Munene G, Banga G, Higginson IJ. Availability of essential drugs for managing HIV-related pain and symptoms within 120 PEPFAR-funded health facilities in East Africa: A cross-sectional survey with onsite verification. Palliative Medicine. 2013 http://www.ncbi.nlm.nih.gov/pubmed/23885009
Powell RA, Namisango E, Gikaara N, Moyo S, Mwangi-Powell FN, Gomes B, Harding R. Public priorities and preferences for end-of-life care in Namibia. doi: 0.1016/j.jpainsymman.2013.04.004. http://www.ncbi.nlm.nih.gov/pubmed/23870841
Mwangi-Powell FN, Powell RA Harding R. Models of delivering palliative and end-of-life care in Sub-Saharan Africa: A narrative review of the evidence. Current Opinion in Supportive & Palliative Care. 2013 http://www.ncbi.nlm.nih.gov/pubmed/?term=Mwangi-
Simms VM, Gikaara N, Munene G, Atieno M, Kataike J, Nsubuga C, Banga G, Namisango E, Fayers P, Powell RA, Higginson IJ, Harding R. Multidimensional patient-reported problems within two weeks of HIV diagnosis in East Africa: A multicentre observational study. PLoS One. 2013. 8(2): e57203 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3576340/
Harding R, Selman L, Simms VM, Penfold S, Agupio G, Dinat N, Downing J, Gwyther L, Ikin B, Mashao T, Mmoledi K, Sebuyira LM, Moll T, Mwangi-Powell F, Namisango E, Powell RA, Walkey FH, Higginson IJ, Siegert RJ. How to analyse palliative care outcome data for patients in Sub-Saharan Africa: an international, multicenter, factor analytic examination of the APCA African POS. J Pain Symptom Manage. 2013 http://www.ncbi.nlm.nih.gov/pubmed/23017619
Harding R, Selman S, Powell RA, Namisango E, Downing J, Meriman A, Ali Z, Gikaara N, Gwyther L, Higginson IJ. Research into palliative care in sub-Saharan Africa. Lancet Oncology. 2013. http://www.ncbi.nlm.nih.gov/pubmed/?term=HARDING
Simms VM, Gikaara N, Munene G, Atieno M, Kataike J, Nsubuga C, Banga G, Namisango E, Fayers P, Powell RA, Higginson IJ, HARDING R. Multidimensional Patient-Reported Problems Within Two Weeks of HIV Diagnosis in East Africa: a Multicentre Observational Study. PLoS One. 2013, Journal of Pain and Symptom Management. https://kclpure.kcl.ac.uk/portal/en/publications/multidimensional-patientreported-problems-within-two-weeks-of-hiv-diagnosis-in-east-africa(1780157a-13a8-4cc9-83e2-2384da65ef4f).html
Powell RA, Harding R, Namisango E, Katabira E, Gwyther L, Radbruch L, Murray S, El-Ansary M, Ajayi IO, Mwangi-Powell FN. Palliative care research in Africa: An Overview. European Journal of Palliative Care. 2013.
Mwangi-Powell FN, Powell RA, Harding R. Models of delivering palliative and end-of-life care in sub-Saharan Africa: a narrative review of the evidence. Curr Opin Support Palliat Care. doi: 10.1097/SPC.0b013e328360f835. Review. http://www.ncbi.nlm.nih.gov/pubmed/23572158
McCleary-Sills J, Kanesathasan A, Brakarsh J, Vujovic M, Kgethi Dlamini MeD c , Namisango E, Nasaba R, Fritz K. Foundation for the Future: Meeting the Psychosocial Needs of Children Living With HIV in South Africa and Uganda. Journal of HIV/AIDS & Social Services. 2013 http://www.tandfonline.com/doi/abs/10.1080/15381501.2012.749818?af=R#.U6Q-u_mSw1I
Harding R, Selman L, Ali Z, Powell RA, Namisango E, Mwangi-Powell F, Gwyther L, Nancy Gikaara, Higginson IJ Siegert RJ: Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multi-centred study comparing two outcome measures. Health and Quality of Life Outcomes 2014 http://www.hqlo.com/content/12/1/80
Harding R, Namisango E, Powell RA, Merriman A, Gikaara N, Ali Z, Higginson IJ. Palliative care-related self-report problems among cancer patients in East Africa: a two country study 1.Journal of Supportive Care in Cancer. 2014 http://link.springer.com/article/10.1007%2Fs00520-014-2301-5
Siegert R, Selman L, Higginson IJ, Ali Z, Powell RA, Namisango E, Mwangi-Powell F, Gwyther L, Gikaara N, Harding R. A psychometric evaluation of the Functional Assessment of Chronic Illness Therapy – Palliative Care (FACIT-Pal) Scale with palliative care samples in three African countries. J Pain Symptom Manage. 2014 http://www.ncbi.nlm.nih.gov/pubmed/24742786
Downing J, Gomes B, Gikaara N, Munene G, Daveson BA, Powell RA, Mwangi-Powell FN, Higginson IJ, Harding R on behalf of Project PRISMA. Public preferences and priorities for end-of-life care in Kenya: a population-based street survey. BMC Palliative Care 2014 http://www.biomedcentral.com/1472-684X/13/4
Penfold S, Namisango E, Banga G, Kataike J, Atieno M, Munene G, Moreland S, Downing J, Higginson IJ, Harding R, Gikaara N, Simms V, Mwangi-Powell F, Powell RA. The HIV Basic Care Package: Where is it available and who receives it? Findings from a mixed methods evaluation in Kenya and Uganda. AIDS Care. 2014 http://www.ncbi.nlm.nih.gov/pubmed/?term=Penfold+S%2C+Namisango+E%2C+Banga+
Harding R, Simms V, Penfold S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Gikaara N, Atieno M, Kataike J, Nsubuga C, Munene G, Banga G, Higginson IJ. The presence of CD4 counts for the management of HIV patients in East Africa: a multicentred study.6.AIDS Care. 2014 http://www.ncbi.nlm.nih.gov/pubmed/24099416
Powell RA, Harding R, Namisango E, Katabira E, Gwyther L, Radbruch L, Murray SA, El-ansary M, Leng M, Ajayi IO, Blanchard C, Kariuki H, Kasirye I, Namukwaya E, Gafer N, Casarett D, Atieno M, Mwangi-Powell FN. Palliative care research in Africa: Consensus building for a prioritized agenda. (Special Article). Journal of Pain and Symptom Management. 2014 http://www.ncbi.nlm.nih.gov/pubmed/23870840
Krakauer E, Callaway M, Foley K, De Lima L, Mwangi-Powell F, Radbruch L: No visa for health: Schengen and North American countries block medical education for clinicians from poor countries. http://eapcnet.wordpress.com/ 30.5.13
Downing J, Namisango E, Kiyange F, Luyirika E, Gwyther L, Enarson S, Kampi J, Sithole Z, Kemigisha-Ssali E, Masclee M,Mukasa I.The net effect: spanning diseases, crossing borders—highlights from the fourth triennial APCA conference and annual HPCA conference for palliative care. ecancer 7 371 / DOI: 10.3332/ecancer.2013.371 http://ecancer.org/journal/7/full/371-the-net-effect-spanning-diseases-crossing-borders-highlights-from-the-fourth-triennial-apca-conference-and-annual-hpca-conference-for-palliative-care.php
Cleary J, Powell RA, Munene G, Mwangi-Powell FN, Luyirika E, Kiyange F, Merriman A, Scholten W, Radbruch L, Torode J, Cherny NI. Formulary availability and regulatory barriers to accessibility of opioids for cancer pain in Africa: a report from the Global Opioid Policy Initiative (GOPI). Annals of Oncology 24 (2013) xi14-xi23 http://www.ncbi.nlm.nih.gov/pubmed/24285225
Powell RA, Radbruch L, Mwangi-Powell F, Cleary J, Cherny N: Failing to numb the pain. South African Medical Journal. 2014 http://www.ncbi.nlm.nih.gov/pubmed/24742786
Harding R, Selman L, Ali Z, Powell RA, Namisango E, Mwangi-Powell F, Liz Gwyther, Gikaara N, I Higginson IJ, Siegert RJ. Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred study comparing two outcome measures. . Health and Quality of Life Outcomes 2014, 12:80 doi:10.1186/1477-7525-12-80 http://www.hqlo.com/content/pdf/1477-7525-12-80.pdf
Moens K, Siegert RJ, Taylor S, Namisango E, Harding R. Symptom Clusters in People Living with HIV Attending Five Palliative Care Facilities in Two Sub-Saharan African Countries: A Hierarchical Cluster Analysis.; ENCOMPASS; EURO IMPACT. PoS One. 2015 May 12;10(5):e0126554. doi: 10.1371/journal.pone.0126554. Collection 2015.Free PMC Article http://www.ncbi.nlm.nih.gov/pubmed/25966420
Namisango E, Harding R, Katabira ET, Siegert RJ, Powell RA, Atuhaire L, Moens K, Taylor S. A novel symptom cluster analysis among ambulatory HIV/AIDS patients in Uganda. AIDS Care. 2015 Mar 18:1-10. http://www.tandfonline.com/doi/abs/10.1080/09540121.2015.1020749?journalCode=caic20#.VhYo6t-qqko
submitted : Allsop MJ, Powell RA, NamisangoE. The state of mHealth development and use by palliative care services in sub-Saharan Africa: a systematic review of the literature and visual framework for progression. BMJ supportive and palliative care
Namisango E, Harding R, Atieno M, Powell RA, Ali Z, Meiring M, Ivy Kasirye, Ssengooba J, Downing J . Cross-national validation of an outcome measure for children with life-limiting and life-threatening illness: the APCA African Children’s Palliative Outcome Scale (C-POS) submitted to Journal of paediatrics manuscript available on request