There are just 14 days to go to #EAPC2022! The 12th World Research Congress Online of the European Association for Palliative Care (EAPC) has live sessions on 18 to 20 May 2022, and lots of on-demand content. Today, we are pleased to welcome Eve Namisango from the African Palliative Care Association to give us a sneak peek into her plenary lecture and to tell us more about why children and young people must be at the centre of palliative care research. This is the first of two blogs from Eve and the theme for this blog is informed consent and the engagement of healthcare workers.
Over 21 million children and young people worldwide could benefit from palliative care each year, yet many may not receive it. The care that these children receive must be person-centered and underpinned by robust evidence, which makes it important to involve the child and reduce reliance on proxy reporting (asking parents and carers for the views of children and young people) whenever possible. That said, involving children and young people in palliative care research can be challenging. In these blogs and in my plenary lecture, I will discuss some of the common challenges and propose solutions based on my own experiences in conducting pediatric palliative care research with children in Uganda, Kenya, Namibia, South Africa and those shared by researchers from Belgium, the United Kingdom (U.K.) and the Middle East.
One of the most common challenges is gatekeeping by health workers at clinical sites. For example, health workers may be concerned that the children and young people are too ill to participate in research, so they may not be referred to research teams to receive information about the study and make an informed decision if they would like to participate or not. This leads to exclusion of certain categories of children and young people, and some conditions, in research, especially the children and young people who are most ill. We have found that the way around this is to provide information about the study to the health workers and to explain that children and young people and caregivers can be empowered to make an informed decision regarding whether to participate or not. It can help to build up the trust of healthcare workers by reassuring them that there are terms and conditions for children and young people’s participation by the ethics regulators or administrators at the clinical sites. Gentle engagement such as sharing updates regarding planned and on-going studies can help to create more awareness about the study and encourage recruitment.
There are ways to ensure children and young people have all they need to make an informed decision about participation. One of these ways is to provide age-appropriate informed consent forms. This makes it easy for children and young people to read and understand the content and hence make decisions. It is also helpful to give children forty-eight hours to internalise the information and decide if they want to take part, as sometimes the information is too much to digest in one go. Having these two meetings – introducing the research and then meeting 48 hours later – enables areas of concern and questions to emerge, enabling children and young people and teams to have open discussions and then agree on the way forward. Besides engaging with the health workers, we should also cooperate with the caregivers as their role in guiding the children through the consent process is key. Sometimes, I have engaged a mental health worker to conduct mini-cognitive tests before enrolling children, and I found it helpful as some were excluded because they did not have the ability to comprehend the information provided in the consent form and use it to make an informed decision regarding participation. In my experience working with a disability support person is also useful. She easily identified children with hearing impairments through play and short stories and she advised me to speak much louder during our interview sessions.
All children and young people receiving palliative care deserve the best care, treatment and experience possible, and research is essential to this. In my next blog I will look at developmental age, how to engage with children and young people and cultural sensitivity.
My thanks to the following people who shared useful experiences from their work: Marie Friedel, Lucy Coombes, Sema Yurduşen, Waleed Alrjoob, Debbie Braybrook, Stephen Marshall, Ghadeer Al-arja, Anna Roach, Sabah Boufkhed and Richard Harding.
Join Dr. Eve Namisango at #EAPC2022. On Friday 20th May 2022, Eve will give the Paediatric Palliative Care Plenary ‘Best Practices for Involving Children and Young People in Palliative Care Research’. Find out more about the Congress here.
Links and resources
- Register here for the EAPC 12th World Research Congress Online.
- Eve Namisangoet al. ‘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 Medicine Journal.
- Eve Namisango et al. in press – Manuscript ID PMJ-21-0114.R3 ‘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 Journal.
- Jennifer McCleary-Sills et al, ‘Foundation for the Future: Meeting the Psychosocial Needs of Children Living With HIV in South Africa and Uganda’, Journal of HIV/AIDS & Social Services.
- Eve Namisango et al ‘Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes, The Patient.
- Catch up on the special series about the EAPC 12th World Research Congress Online on the EAPC blog here.
- Read the abstract of Dr Namisango’s lecture, and all other congress presentations and posters, in the Book of Abstracts for the EAPC 12th World Research Congress Online, to be published by ‘Palliative Medicine’.
About the author
Eve Namisango is Programmes, Research and Development Manager at the African Palliative Care Association. She holds masters and PhD degrees in palliative care from Cicely Saunders Institute, King’s College London.She also practices child life support, grief and bereavement support in communities. This blog is largely based on her research experience on interviewing children with HIV in Uganda and South Africa about their psychosocial needs and her PhD project research on outcome measurement in children with life limiting and life-threatening conditions which involved engaging children in research, using person-centred outcome measures and in result dissemination. Twitter: @EveNamisango; ORCID: 0000-0001-5032-4714.
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