Research

The ICPCN believes that research and the dissemination of findings is an important component of the development of children’s palliative care globally. Increasing the evidence base for children’s palliative care is vital in order to improve the care provided, along with service delivery, education and advocacy. Dissemination of research results, and the sharing of experiences is vital to building capacity for children’s palliative care.

ICPCN’s Remarkable Researcher

Julia Downing

Prof Julia Downing is our Chief Executive andalso  leads on research related issues for ICPCN
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ICPCN Research Projects

ICPCN is involved in a variety of research studies, undertaken in collaboration with other organisations. Examples of ongoing research projects include:

  1. Identifying global priorities for research into children’s palliative care through a delphi study. The delphi process has been completed and the results are currently being written up for publication. It is hoped that the results of this study will serve as a guide to inform the development of an international research agenda for ICPCN, inform the development of collaborative research studies and provide the evidence base to justify future research projects.
  2. An evaluation of the impact of the training programmes conducted through ICPCN. This is a mixed methods study, with the initial phase of an online survey, having been recently completed. The second phase will be conducted through semi-structured interviews. The aim of the study is to look at the impact of the training programmes, both face-to-face and elearning that ICPCN have undertaken in the past couple of years, and to adjust accordingly.
  3. A study looking at the role of ICPCN in regard to the WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical illnesses. The new guidelines were published a year ago, and ICPCN needs to address their role in terms of promoting and utilising these guidelines. A survey was completed by 80 participants from 20 countries, and the results are being finalised. It is hoped that this will help the ICPCN in developing their strategy towards these guidelines.
  4. An analysis of palliative care need in 3 countries. This is a study being undertaken in collaboration with UNICEF to develop a methodology to establish palliative care needs in children to support more effective planning and responses. It hopes to provide evidence of coverage of palliative care services and service gaps in relation to palliative care for children which can inform investment decisions at a country and global level. It is being conducted in Kenya, South Africa and Zimbabwe and the results should be available by the end of 2013.
  5. The identification of successful models of children’s palliative care in sub-Saharan Africa and what makes them successful. This study is due to start in September 2013 and is being done in collaboration with FHSSA. A mixed methods approach is being utilised including questionnaires, focus group discussions and semi-structured interviews. It is hoped that the results of this study will inform the ongoing development of children’s palliative care in the region.

For more information about any of these studies, or research into children’s palliative care please contact Prof Julia Downing.

Click here for a complete list of all research papers and publications to which ICPCN has contributed.

Share your research with the ICPCN Network

ICPCN’s mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledge.

ICPCN wants to help all agencies across the world to share their expertise in children’s palliative care. One of the key ways that we can do this is by sharing research, information and good practice.

We want to provide a ‘one stop shop’ for information relating to children’s palliative care. If we do this we will also increase the international evidence base for children’s palliative care and it will help us with lobbying to include children’s hospice development and get palliative care on the agendas of governments, and to encourage NGOs to include such issues in their development programmes.

Any organization working with, or with an interest in children’s palliative care can share their research, information and good practice with ICPCN.

All you have to do to share your research is to fill in a simple “research upload form” – telling us a few details about your organization and include a short abstract, plus a link to the full document if you choose to. We will then share your research with the ICPCN network.

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