ICPCN’s Publications and Resources
Jump to sections:Publications Research, Papers and Journal Articles
The ICPCN Charter sets out the International standard of support that is the right of all children living with life limiting or life threatening conditions and their families.
The Charter can be downloaded here and is available in a range of languages. If it is not available in your language and you would like to assist in translation please contact us at email@example.com
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Children’s Palliative Care: An International Case-Based Manual
Edited by: Julia Downing
Price: ebook – £31.99 softcover book – £39.99
Sold by Springer
This manual, edited by ICPCN enables individuals working in children’s palliative care globally to learn through engaging real-world cases. The aim is to provide a clinical case-based resource that is globally relevant and accessible to those working in CPC. Drawing on case histories from around the world that reflect key issues and elements of CPC, it provides a practical approach grounded in experience. It addresses multidisciplinary care in the management of children and their families; discusses cases from an international perspective, and shares examples from a variety of countries, utilising cases across a range of ages and conditions, demonstrating holistic care. It represents the first case-based manual on global CPC and is endorsed and promoted by the International Children’s Palliative Care Network (ICPCN).
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Palliative Care – Celebrating Nurses’ Contributions
This report was led by ICPCN and published by ICPCN, IAHPC and WHPCA in 2021 in recognition of the International Year of the Nurse and Midwife in 2020. Launched on World Health Day in 2021 it highlights the work of 27 nurses, some working in low- and middle-income countries, some in high income settings, some developing services, others working in humanitarian settings, some in clinical care, some in education, research, academia and advocacy.
Nurses play a key role in the provision of palliative care globally, and during the International Year of the Nurse and Midwife in 2020, we wanted to recognise this and celebrate their work. As we work to continue developing and strengthening palliative care, we have had the privilege of meeting nurses around the world working in the field, some who are newly qualified and full of enthusiasm, others who are nearing the end of their careers and are keen to pass on their knowledge and skills.
This report is a celebration of the pivotal role of nurses in palliative care across the globe. We hope that it will also serve as an inspiration to policymakers, health care administrators, and managers to support nurses so they can have a more prominent voice in health policymaking, education, and care provision.
The children’s palliative care provider of the future: A blueprint to spark, scale and share innovation
This policy report sets out an optimistic vision of what a world-class provider of children’s palliative care (CPC) could look like in the future. It proposes nine key features through which providers can innovate to improve access and quality over time, drawing on best practice and trends as described by 50 CPC service leaders in 27 countries, as well as insights from other healthcare sectors. Recognising that there is huge variation among CPC providers and the systems they work in, this ‘blueprint’ is intended for inspiration and challenge, not prescription.
In addition to key areas for future innovation it also highlights many areas in which CPC providers are already exemplars within the healthcare sector. CPC leaders and other stakeholders are invited to reflect on the opportunities the blueprint describes and how their own organisations might benefit from pursuing these.
The report was developed by Imperial College London’s Institute for Global Health Innovation, with the support of Mais Research Center. It was produced in association with ICPCN, Global Treehouse Foundation., Helix Centre, Isabella Seragnoli Foundation, Masi Family Office Innovation Centre, ORTO Impact and Fondazione AIS.
Palliative Care, COVID-19 and Universal Health Coverage Report
Based on a survey conducted in June 2020, this report provides recommendations to governments to integrate palliative care into COVID-19 responses, train health care workers in palliative care and build back better through the integration of palliative care into health systems, including through Universal Health Coverage reforms. It is a moral imperative to ensure that adults and children are not experiencing avoidable serious health related suffering during the COVID-19 pandemic which could be alleviated through access to integrated and cost-effective palliative care. The survey was undertaken by ICPCN, WHPCA and PallCHASE.
Palliative Care and Universal Health Coverage Fact Sheet
The Palliative Care and Universal Health Coverage Fact Sheet, published in June 2018 was developed by WHPCA, IAHPC and ICPCN. The fact sheet information is based on the findings of the Lancet Commission Report on Palliative Care and Pain relief (2017).
Touching Rainbows – Acknowledging the Child’s Voice in Palliative Care
Edited by: Julia Downing and Sue Boucher
Price: US$25 (including 5$ postage and packaging per copy)
“Man is born with rainbows in his heart and you’ll never read him unless you consider rainbows.”
Touching Rainbows: Acknowledging the Child’s Voice in Palliative Care is an ICPCN publication in which children and family members of children living with life threatening or life limiting conditions, and sometimes their carers, share a slice of their difficult journey with great courage, honesty and openness. This is done through stories, poems, artwork and pictures.
These inspiring stories come from across the world and, where possible, have been written in the writer’s own language with an English translation. It is hoped they will touch and enrich the lives of many, encourage those travelling a similar path, and instil a sense of courage and joy, despite the many challenges and heartaches that come with this journey. These children and their families pass through many storms and dark days, but still somehow manage to aspire to reach out for the promise and beauty of the rainbow.
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Research into the need for children’s palliative care
Assessment of the Need for Palliative Care for Children
Three country report: South Africa, Kenya and Zimbabwe – completed in 2013
In November 2013, UNICEF and ICPCN launched the results of a collaborative research project to quantify the need for children’s palliative care in three sub-Saharan countries – Kenya, South Africa and Zimbabwe.
The Report “Assessment of the Need for Palliative Care for Children. Three Country Report: South Africa, Kenya and Zimbabawe” was the first study to look at the prevalence of life-limiting illness and life-threatening conditions in countries in the developing world and compare this with the coverage of palliative care services, to identify the gap between them, and develop a methodology that can be used to estimate the global need.
The knowledge that so many children are suffering needlessly and dying in pain and so few children have access to palliative care services in these countries is something that should steel every one of us to action. This important research provides us not only with evidence of the enormous need but also a methodology that can be used by other countries to calculate their own needs and gaps in services.
By adapting the methodology used in this study, researchers can assess the need for children’s palliative care services in every country which will in turn lead to a clearer and more accurate picture of the global need for children’s palliative care.
Jump to sections:Publications Research, Papers and Journal Articles
ICPCN Papers and Journal Articles
The ICPCN has contributed to the following papers, books and publications and also has a YouTube channel where you can access further resources.
- Bialous S, Krishnasamy K, Marsh J, Downing JD, So WKW, Yates P. 2023 ISNCC Position Statement on Tobacco Cancer Nursing Published ahead of print.
- Scott JM, Coombes L, Braybrook D, Roach A, Haroardottir D, Bristow K, Ellis-Smith C, Downing J, Murtagh FEM, Farsides B, Fraser LK, Bluebond-Langner M, Harding R on behalf of C-POS. 2023. Spiritual, religious and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliative Medicine. Published ahead of print. Doi: 10.1177/026921632316501
- McPoland P, Grossoehme DH, Sheehan DC, Stephenson P, Downing J, Deshommes T, Gassant PYH, Friebert S. 2023. Children’s understanding of dying and death: a multi-national grounded theory study. Palliative and Supportive Care. https://doi.org/10.1017/S1478951523000287
- Downing JD, Adjetey Appiah A, Ask K, Chante ST, Eves E, Tysoe F, Glennon C, Krishnasam M, Milanti A, Philips J, Power J, So WKW, Yates P. (2023) Position Statement on Cancer Nursing Leadership. Cancer Nursing 46(2) 85-91
Downing J,Bagcivan G, Burns K, Challinor J, Cruickshank S, de Villiers M, Diez de Los Rios de la Serna C, Doumit M, Kumaralingam N, Lodge M, Robles Mendoza L, Saad Rassam R, Samba V, Tomlins E, Young A. (2023) Celebrating oncology nursing: from adversity to opportunity. The Global Power of Oncology Nursing Conference held virtually on the 15th November 2022. Ecancer 17:1507
- Rapa E, Hanna JR, Pollard T, Santos-Paulo S, Gogay Y, Ambler J, Namukwaya E, Kavuma D, Nabirye E, Kemigisha RM, Namyeso J, Brand T, Walker L, Neethling BG, Downing J, Ziebland S, Steon A, Dalton LJ. (2023) Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings. BMJ Open 13:e064741. doi:10.1136/ bmjopen-2022-064741
- Downing J, Namisango E, Connor C, Batanda P, Irumba LC, Basemera B, Jatho A, Nakami S, Nalubega H, Kamate A, Basirika D, Zalwango J, Namuddu M, Chiyoka W, Kayondo F, Byaruhanga D, Rusanganwa E, Davis H, Watiti S, Gaolebale B, Ahern LN, Thomas L, Luyirika E. (2022) The Declaration on Palliative Care in a Pandemic: report of the African Ministers of Health meeting and the 7th International African Palliative Care Conference, held from the 24th-26th August 2022 in Kampala, Uganda and virtually. Ecancer 16:1474. https://doi.org/10.3332/ecancer.2022.1474
- Earle S, Blackburn M, Chambers L, Downing J, Flemming K, Hale J, Marston HR, O’Dell L, Sinason V, Watts L, Whitney S. (2022) ‘Whose life are They Going to Save? It’s Probably Not Going to be Mine!’ Living With a Life-Shortening Condition During the Coronavirus (COVID-19) Pandemic: A Grounded Theory Study of Embodied Precarity. Qual Health Res. Oct 16: 10497323221131692 Online ahead of print.
- Van Heerden J, Irumba LC, Downing J, Davidson A, Hessissen L, Schoeman J, Ladas EJ, Israel T, Cox S, Abdelhafeez H, Arao SGO, Fentie AM, Kamal S, Parkes J, Naiker T, Ludick A, Balagadde-Kambugu J, Geel J. (2022) Current status of Africa pediatric oncology education efforts aligned with the Global Initiative for Childhood Cancer. Pediatric Hematology and Oncology. Published online 9th Sep 2022.
- Van Heerden J, Irumba LC, Assani K, Downing J, Davidson A, Hessissen L, Schoeman J, Israel T, Cox S, Abdelhafeez H, Arao SO, Parkes J, Balagadde-Kambugu J, Geel J. (2022) Conference report on the 14th International Society of Paediatric Oncology African Continental Meeting. 16-18th March 2022, Kampala, Uganda. Ecancer 16:1423
- Bustamante LM, Okhuysen-Cawley R, Downing J, Connor SR, Muckaden MR, Phillips M, Icaza A, Garzon N, Nakashima Y, Morgan K, Mauser S and Grunauer M. (2022). The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care. Children 9:642
- Namisango E, Bristowe K, Murtagh FEM,Downing J,Richard A Powell RA, Atieno M, Abas M, Ali Z, Luyirika EBK, Meiring M, Mwangi-Powell FNM, Higginson IJH,and Harding R. (2022) 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. Palliative Medicine. 36(7): 1140-1153.
- Downing J and Ling J (2022) Editorial: War in Europe: palliative care in a humanitarian crisis. International Journal of Palliative Nursing. March. 28(3):106-107.
- Lohman D, Cleary J, Connor S, De Lima L, Downing J, Marston J, Morris C, Pardy S, and Pettus K (2022) Advancing Global Palliative Care over Two Decades: Health System Integration, Access to Essential Medicines, and Pediatrics. Journal of Pain and Symptom Managemen 64(1): 58-69.
- Carr K, Hasson F, McIlfatrick S, Downing J. (2022) Initiation of Paediatric Advance Care Planning: Cross Sectional Survey of Health professionals reported behaviour. Child: Care, Health and Development. 48:423-434
- Carr K, Hasson F, McIlfatrick S, Downing J. (2022) Parents’ experiences of initiation of paediatric advance care planning discussions: a qualitative study. European Journal of pediatrics. 181:1185-1196
- Benini F, Pappadatou D, Bernada M, Craig F, De Zen L, Downing J, Drake R, Freidrichsdorf S, Garros D, Giacomelli L, Lacerda A, Lazzarin P, Marceglia S, Marston J, Mukaden MA, Papa S, Parravicini E, Pellegatta F, Wolfe J. (2021) International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management. 63(5): e529-e543.
- Downing J, Niyonzima N, Mwebesa E, Mutyaba I, Ddungu H, Irumba IC, Zirimenya L, Basirija D, Mbarusha I, Kobusingye C, Happy M, Jatho A, Olet Adong D, Kabagambe C, Mpamani C, Nalukwago Z, Kyomuhangi Z, Zalwango J, Orem J, Mwesiga M. (2021) Cancer and palliative care in COVID-19 and other challenging situations – highlights from the Uganda Cancer Institute- Palliative Care Association of Uganda 3rd Uganda Conference on Cancer and Palliative Care, 23-24 September 2021, held in Kampala, Uganda. ecancer 15:1333
- Neilsen S, Randall D, McNamara K, Downing J. (2021) Children’s palliative care education and training: developing an education standard framework and audit. BMC Med Educ 21:539.
- Rosa WE, Downing J, Collier A, and Ferrell BR. (2021). New paths forward for palliative nursing.International Journal of Palliative Nursing, 27(8), 383-384.
- McNeil MJ, Kaye EC, Vedaraju Y, Baker JN, Devidas M, Downing J, Graetz D, Ranadive R, Rosenberg AR, Wiener L and Weaver MS. (2021) Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic. Journal of Pain and Symptom Management. 62(3) e91-99.
- Rosa WE,Downing J, Ferrell BR, Grant L, Matula ST, Pande, S, Sey-Sawo J, Sowe M, and Upvall MJ. (2021). Global palliative nursing partnerships in the face of COVID-19: Considerations and strategies. International Journal of Palliative Nursing. 27(8) 410-416.
- Rosa WE, de Campos AP, Abedini NC, Gray TF, Abu-Saad Huijer H, Bhadelia A, Boit JM, Byringiro S, Crisp N, Dahlin C, Davidson PM, Davis S, De Lima L, Farmer PE, Ferrell BR, Hategekimana V, Karanja V, Knaul FM, Kpoeh J, Lusaka J, Matula ST, McMahon C, Meghani SH, Moreland PJ, Ntizimira C, Radbruch L, Rajagopal MR. and Downing J. (2021) Optimizing the global nursing workforce to alleviate serious health-related suffering worldwide.Journal of Pain and Symptom Management. Jul 29;S0885-3924(21)00470-X.
- Downing J. (2021) Editorial – It’s time to invest in nursing and not cut back. International Journal of Palliative Nursing. 27(2):175
- Downing J. (2021) Editorial: Are we providing the evidence? International Journal of Palliative Nursing. 27(2):71.
- Meyerheim M, Karamanidou C, Payne S, Garani-Papadatos T, Sander A, Downing J, Stamatopoulos K, Ling J, Payne C, Scarfo L, Lokaj P, Maramis C and Graf N. (2021). MyPal-Child Study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients. BMJ Open; 11:e045226.
- Zuniga-Villanueva G, Ramos-Guerreri JA, Osio-Saldana M, Casas JA, Marston J, Okhuysen-Calwey R. (2021) Quality Indicators in Pediatric Palliative Care: Considerations for Latin America. Children 8(3):250
- Coombes L, Bristowe K, Ellis-Smith C, Aworinde J, Fraser LK, Downing J, Bluebond-Langner M, Chambers L, Murtagh FEM, Harding R. (2021) Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Quality of Life Research. 30:1803-1832
- Carr K, Hasson F, McIlfatrick S, Downing J. (2021) Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review. Palliative Medicine. 35(3): 503-528.
- Friedel M, Brichard B, Boonen S, Tonon C, De Terwangne B, Bellis D, Mevisse M, Fonteyne C, Jaspard M, Schruse M, Harding R, Downing J, Namisango E, Degryse JM, Aujoulat I. (2021) Face and content validity, acceptability and feasibility of the adapted version of the Children’s Palliative Outcome Scale: A Qualitative Pilot Study, Journal of Palliative Medicine24(2):181-188.
- Arias-Casais N, Garralda E, Pons JJ, Marston J, Chambers L, Downing J, Ling J, Rhee JY, de Lima L, Centeno C. (2020) Mapping paediatric palliative care development in the WHO European region: Children living in low-middle income countries are less likely to access it.Journal of Pain and Symptom Management 60(4):746-753.
- Radbruch L,Liliana de Lima, Knaul F, Wenk R, Zipporah V. Ali, Bhatnaghar S, Blanchard C, Bruera E, Buitrago R, Burla C, Callaway M, Munyoro EC, Centeno C, Cleary J, Connor SR, Davaasuren O, Downing J, Foley K, Goh C, Gomez-Garcia W, Harding R, Khanh QT, Larkin P, Leng M, Luyirika E, Marston JM, Moine S, Osman H, Pettus K, Puchalski CM, Rajagopal MR, Spence D, Spruijt O, Venkateswaran C, Wee B, Woodruff R, Yong J, Pastrana T. (2020) Redefining Palliative Care – a New Consensus-based Definition. Journal of Pain and Symptom Management 60(4):754-764.
- Namisango E, Bristowe K, Murtagh FE, Downing J, Powell RA, Abas M, Haufiku D, Guma S, Luyirika EBK, Mwangi-Powell FN, Higginson IJ, Harding R. (2020). Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study. Palliative Medicine34(3):319-335.
- Connor S, De Lima L, Downing J, Ling J, Quilliam P, Radbruch L. (2020) The Berlin Declaration: A Collaborative Roadmap to Advance Global Hospice and Palliative Care. Journal of Palliative Medicine. 23(1):1-2
- Pergert P, Sullivan CE, Adde M, Mbah Afungchwi GM, Downing J, Hollis R, Ilbawi A, Morrissey L, Punjawani R, Challinor J. (2020) An ethical imperative: Safety and specialization as nursing priorities of WHO Global Initiative for Childhood Cancer. Pediatric Blood & Cancer. 2020;67:e28143.
- Downing J, Niyonzima N, Guma S, Batuli R, Kiwanuka R, Atuhe I, Nalukwago Z, Mwesiga M, Phipps W, Ddungu H. (2019) Towards universal coverage – highlights from the 2nd Uganda Conference on Cancer and Palliative Care, 5-6 September 2019, Kampala, Uganda. ecancer 13: 976.
- Pilkington G, Knighting K, Bray L, Downing J. Jack BA, Maden M, Mateur C, Noyes J, O’Brien MR, Roe B, Tsang A, Spencer S. (2019) The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review. BMJ Open 2019;9:e030470.
- Pettus K, De Lima L, Maurer M, Husain A, Connor S, Torode J, Ling J, Downing J, Rajagopal MR, Radbruch L, Pastrana T, Luyirika EB, Goh C, Marstin K and Cleary J. (2019) Ensuring and Restoring Balance on access to Controlled Substances for Medical and Scientific Purposes: Joint Statement from Palliative Care Organizations. Journal of Pain & Palliative Care Pharmacotherapy, 32:2-3, 124-128.
- Namisango E, Bristowe K, Allsop MJ, Murtagh FEM, Abas M, Higginson IJ, Downing J, Harding R. (2019) Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. The Patient-Patient Centered Outcomes Research 12:15-55.
- Ghoshal A, Talawadekar P, Palleri A, Marston J, Muckaden M. (2018). Impact of educational training in improving skills, practice, attitudes and knowledge of healthcare workers in pediatric palliative care: Children’s palliative care project in the Indian State of Maharashtra. Indian Journal of Palliative Care. 24(4): 411-425.
- Harding R, Bristowe K, Downing J, Gwyther L, Luyirika E, Meiring M, Ratshikana-Moloko M. (2018) Policies on Palliative Care in Different Parts of the World. In: R. D. MacLeod, L. Block (eds.), Textbook of Palliative Care, Springer, Cham.
- Downing J, Boucher S, Ambler J, Brand T, Sithole Z, Nkosi B, Meiring M, Gwyther E, Sithole L, Steel B, Daniels A. (2018) Inspiration, innovation and integration: highlights form the third ICPCN conference on children’s palliative care, 30th May to 2nd June 2018, Durban, South Africa. ecancer 12:870
- Daniels A, Downing J. (2018) Increasing access to children’s palliative care education through e-learning: a review of the ICPCN experience. International Journal of Palliative Nursing. 24(7): 351-358.
- Downing J. (2018) Innovation, inspiration and integration: children’s palliative care. International Journal of Palliative Nursing. 24(7): 315.
- Downing J, Namisango E, Harding R (2018) Outcome measurement in paediatric palliative care: lessons from the past and future developments Annals of Palliative Medicine 7(Suppl 3):S151-S163
- Knighting K, Bray L, Downing J, Kirkcaldy A, Mitchell T, O’Brien M, Pilkington M, Jack B (2018) Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices. Journal of Advanced Nursing. 74(8): 1888-1898
- Downing J, Boucher S, Daniels A, Nkosi B. (2018) Paediatric Palliative Care in Resource-Poor Countries. Children 5:27.
- Knaul FM, Farmer PE, Krakauer EL, De Lima, L, Bhadelia A, Kwete XJ, Arreola-Ornelas H, Gómez-Dantés O, Rodriguez NM, Alleyne GAO, Connor SR, Hunter DJ, Lohman L, Radbruch L,del Rocío Sáenz Madrigal M, Atun R, Foley KM, Frenk J, Jamison DT, Rajagopal MR, on behalf of the Lancet Commission on Palliative Care and Pain Relief Study Group. (2018) Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the Lancet Commission report. The Lancet. 391:1391-1454.
- Grant L, Downing J, Luyirika E, Murphy M, Namukwaya L, Kiyange F, Atieno M. Kemigish-Ssali E, Hunt J, Snell K, Murray SA and Leng M. (2017) Integrating palliative care into national health systems in Africa: a multi-country intervention study. Journal of Global Health 7(1):010419
- Connor SR, Downing J, Marston J. (2017) Estimating the global need for palliative care for children: A cross-sectional analysis. Journal of Pain and Symptom Management. 53(2):171-177.
- Naicker SN, Richter L, Stein A, Campbell L, Marston J. (2016) Development and pilot evaluation of a home-based palliative care training and support package for young children in southern Africa. BMC Palliative Care 15:41.
- Downing J. (2016) Editorial: To research or not to research – An important question in paediatric palliative care Palliative Medicine 30(10): 902-903
- Downing J, Kiman R, Boucher S, Nkosi B, Steel B, Marston C, Lascar E, and Marston J. ecancer (2016) Children’s Palliative Care ….. Now! highlights from the second ICPCN conference on children’s palliative careecancer 10:667
- Marston J, De Lima L, Powell RA, Palliative Care in Complex Humanitarian Emergencies Network. (2015) Palliative care in complex humanitarian crisis responses. Lancet. Nov 14;386(10007):1940.
- Downing J, Powell RA, Marston J, Huwa C, Chandra L, Garchakova A, Harding R. (2015) Children’s palliative care in low and middle-income countries. Archives of Diseases in Childhood. 101(1)85-90.
- Downing J, Knapp C, Mukaden MA, Fowler-Kerry S, Marston J on behalf of the ICPCN Scientific Committee. (2015) Priorities for global research into children’s palliative care: results of an International Delphi Study. BMC Palliative Care. 14:36
- Bausewein C, Daveson BA, Currow DC, Downing J, Delians L, Radbruch L, Defilippi K, Lopes Ferreira P, Costanini M, Harding R and Higginso IJ. (2015) EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliative Medicine 30(1):6-22.
- Downing J, Jassal SS, Matthews L, Britts H and Friedrichsdorf SJ. (2015) Pediatric Pain Management in Palliative Care. Pain Management. 5(1): 23-25. Doi:
- Boucher S, Downing J, Shemilt R. (2014) The Role of Play in Children’s Palliative Care Children2014, 1(3), 302-317;
- Downing J, Ling J, Benini F, Payne S and Papadatou D. (2014) A summary of the EAPC White Paper on core competencies for education in paediatric palliative care. European Journal of Palliative Care. 21(5): 245-249.
- Downing J, Boucher S, Nkosi B, Steel B and Marston J. (2014) Transforming children’s palliative care through the International Children’s Palliative Care Network. International Journal of Palliative Nursing 20(3) 109-114.
- Downing J, Marston J, Muckaden MA, Boucher S, Cardoz M, Nkosi B, Steel B, Talawadekar P and Tilve P. (2014). Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care. ecancer 8:415.
- Connor SR, Sisimayi C, Downing J, King E, Lim Ah Ken P, Yates R, Iken B and Marston J. (2014) Assessment of the need for palliative care for children in South Africa.International Journal of Palliative Nursing 20(3) 130-134
- Savva N, Krasko O, Knapp C, Downing J, Fowler-Kerry S and Marston J. (2014) How Can We Improve Pain Control in Children Over the World? Results of International Multiprofessional ICPCN Survey. Pain Medicine. 15(7): 1238-1239
- н.н. савва, О.В. Красько, К. Кнапп, Дж. Доунинг, с. Фоулер-Керри, Дж. Марстон, Э.В. Кумирова, а.г. Притык (2014) Приоритетные направления деятельности государственных и общественных организаций по улучшению ситуации с обезболиванием у детей.ОнКОПЕДиатрия. No 3. 14-18.
- Downing J, Marston J and Fleming E. (2014) Children’s Palliative Care: Considerations for a physical therapeutic environment. Journal of Palliative Care2 116-124.
- Downing J, Marston J, Muckaden MA, Boucher S, Cardoz M, Nkosi B, Steel B, Talawadekar P and Tilve P. (2014) Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care. ecancer 8:415
- Downing J, Ling J, Benini F, Payne S, and Papadatou D. (2013) EAPC core competencies for education in paediatric palliative care. Report of the EAPC children’s palliative care education task force. EAPC, Italy.
- Marston J, Boucher S, Downing J, Nkosi B and Steel B. (2013) International Children’s Palliative Care Network: Working together to stop children’s suffering. European Journal of Palliative Care20(6): 308-311.
- Downing J, Namisango E, Kiyange F, Luyirika E, Gwyther L, Enarson S, Kampi J, Sithole Z, Kemigisha-Ssali E, Masclee M, Mukasa I. (2013) The Net Effect: Spanning diseases, crossing borders – highlights from the 4th triennial APCA conference and annual HPCA conference for palliative care.ecancer 7:371
- Downing J and Marston J. (2013) Commentary on children’s palliative care. Ann Palliat Med; 2(2):105-107.
- Downing JD, Marston J, Selwyn C, and Ross-Gakava L. (2013) Developing children’s palliative care in Africa through beacon centres: lessons learnt.BMC Palliative Care. 12:8.
- Downing J, Fowler-Kerry S and Boucher S. (2013) Paediatric palliative care professionals congregate in Rome. International Journal of Palliative Nursing19(1); 4.
- 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. (2012) Development of a palliative care outcome measure for children in sub-Saharan Africa: findings from early phase instrument development. European Journal of Palliative Care. 19(6) 292-295
- Knapp C, Baker K, Cunningham C, Downing J, Fowler-Kerry S and McNamara K. (2012) Pediatric palliative care and the medical home Journal of Palliative Medicine. June, 15(6): 643-645.
- Downing J, Ling J (2012) Education in children’s palliative care across Europe and internationally. International Journal of Palliative Nursing18(3); 115-120.
- Downing J, Birtar D, Chambers L, Drake R, Gelb B and Kiman R (2012) Children’s palliative care: a global concern.International Journal of Palliative Nursing 18(3); 109-114.
- Knapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kerry S, Hain R and Marston J. (2011) Pediatric Palliative Care Provision Around the World: A Systematic Review.Pediatric, Blood and Cancer. 56 (7):361-368.
- Downing J, Marston J and Boucher S. (2010). Children’s palliative care in Africa. The Australian Journal of Cancer Nursing. 11(2):3-10.
- Knapp C, Madden V, Marston J, Midson R, Murphy A and Shenkmen E (2009) Innovative pediatric palliative care programs in four countries. Journal of Palliative Care. 25(2): 132-136.
Book Chapters and Contributions
- Downing J and Marston J. (2021) Chapter 33. Delivering care around the world. In: Hain R, Goldman A, Rapoport A and Meiring M (Eds). Oxford Textbook of Palliative Care for Children.361-372.
- Downing J, Ambler J, Brand T, Nakawesi J. (2021) El niño con VIH/SIDA In: Medicina Palliative en Ninos y Adolescentes. Asrudilo W, Astigarraga I, Salinas A, Mendinueta C, Navajas A, D’Souza C and Jassal SS (Eds.). Paliativos Sin Fronteras.
- Lyckholm L, Norton K and Downing J. (2021) Chapter 6. End of Life: Care of the Dying. In Servaty-Seib HL and Stanton Chapple H (Eds). Handbook of Thanatology: The essential body of knowledge for the study of death, dying and bereavement. Association for Death Education and Counseling. USA. p151-180.
- Knaul F, Radbruch L, Connor S, de Lima L, Arreola-Ornelas H, Mendez Carniado O, Jiang Kwete X, Bhadelia A, Downing J, Krakauer EL. (2020) Chapter 2: How many adults and children are in need of palliative care worldwide?. In Connor S (Ed). Global Atlas of Palliative Care 2nd Edition. London. 17-32.
- Clark D, Centeno C, Clelland D, Garralda E, Lopwz-Fidalo J, Downing J, Varghese C, Connor S. (2020) Chapter 4: How are palliative care services developing worldwide to address the unmet need for care? In Connor S (Ed). Global Atlas of Palliative Care 2nd Edition. London. 45-58.
- Connor S, Downing J, de Lima L. (2020) Chapter 6: What are the available resources at global/regional levels to support palliative care policies, programmes and research in low-middle income countries. In. Connor S (Ed). Global Atlas of Palliative Care 2nd Edition.London. 82-91.
- Harding R, Bristowe K, Downing J, Gwyther L, Luyirika E, Meiring M, Ratshikana-Moloko. (2018) Policies on Palliative Care in Different Parts of the World. In: R. D. MacLeod, L. Block (eds.), Textbook of Palliative Care,
- Harding R, Atieno M, Downing J. (2018) Growing and developing palliative care worldwide: assessing and developing public health approaches to palliative care. In: Walshe C, Preston N, Johnson B. Palliative Care Nursing: Principles and Evidence for Practice. Third Edition.McGraw Hill Education, UK.
- Downing J, Boucher S, Nkosi B, Daniels A. (2018) Palliative Care for children in low and middle-income countries. In MacGrath I (Editor) Cancer Control 2017: Cancer Care in Emerging Health Systems. P71-76. INCTR and Global health Dynamics, UK.
- Downing J. (2017) Education and Curriculum Development in Children’s Palliative Care. In Talawadekar (Ed). Children’s Palliative Care Handbook 2nd Edition. India.
- Boucher S, Downing J, Shemilt R. (2016) The Role of Play in Children’s Palliative Care.Children. In: Navidid U(Ed) The Role of Play in Children’s Health and Development. Printed Edition of the Special Issue Published in Children. MDPI, Switzerland.
- Mwangi-Powell FN, Downing J, Powell RA, Kiyange F, and Ddungu H, (2015) Chapter 76: Palliative care in Africa. In; Ferrell BR, Coyle N, Paice JA, Oxford Textbook of Palliative Nursing Fourth Edition. Oxford University Press, Oxford, UK.
- Downing J, Ambler J, Brand T, Nakawesi J. (2015) Les soins palliatifs a L’intention des enfants ayant le VIH & SIDA In: Medicine Palliative chez les enfants et adolescents. Asrudilo W, Astigarraga I, Salinas A, Mendinueta C, Navajas A, D’Souza C and Jassal SS (Eds.). Paliativos Sin Fronteras.
- McCallister S, Marinlovich Z, Jailer T. (2019) Helping Children Live with HIV: Family and community support for vulnerable children. Hesperian Health Guides, California, USA.
- WHO (2018) Integrating palliative care and symptom relief into paediatrics: A WHO guide for health care planners, implementers and managers. Geneva, WHO.
- WHO (2018) Integrating palliative care and symptom relief into the response to humanitarian emergencies and crisis. A WHO guide. Geneva, WHO.
- Talawadekar P, Muckaden M, Paleri A. Training Manual on Paediatric Palliative Care. Children’s Palliative Care Project Indian Association of Palliative Care.
- Downing J, Nakawesa J and Kiwanuka R. (2012) Paediatric Palliative Care in Uganda In Knapp C, Madden V and Fowler-Kerry S. Paediatric Palliative Care: Global Perspectives. Springer, New York, p 41-64.
- Chambers L, Boucher S, Downing J, Mwangi-Powell F and Kraft S. (2010) The International Children’s Palliative Care Network (ICPCN): a global overview. In Pfund R and Fowler-Kerry S (Eds) Perspectives on Palliative Care for Children and Young People: A Global Discourse.Radcliffe Publishing, Oxford.
- Downing J. (2020) Children’s Palliative Care: An International Case-Based Manual. Springer, Switzerland, ISBN 987-3-030-27374-3
- Downing J and Milicevic N (Eds). (2014) Palijativno zbrinjavnje dece.Projekat Ministarstva zdravlja I Evropske unije “Razvoj palijativnog zbrinjavanja u Srbiji”. Beograd, Serbia.
- Boucher S and Downing J. (2011) Touching rainbows: Acknowledging the child’s voice in palliative care. ICPCN South Africa. ISBN 978-0-620-51623-5
Prior to 2010
- Amery J (Editor) (2009) Children’s Palliative Care in Africa. Oxford University Press, London. Can be downloaded from this website
- Amery J (Editor) A Really Practical Handbook of Children’s Palliative Care. Lulu.com Can be downloaded from this website