There are just 9 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 second of two blogs from Eve and the theme for this blog is developmental age, how to engage with children and young people and cultural sensitivity.
In my last blog, I discussed informed consent and the engagement of healthcare workers. Now I am turning my attention to three other key issues. First, the often-neglected topic of developmental age. This means the age that the child or young person is in their understanding and cognitive ability rather than their chronological age. Considering this shapes the nature of the research methods and the development of questionnaires and consent forms to ensure that these methods are appropriate for all children and young people who may wish to take part. More so, the age-banding to ensure that children who belong together in terms of developmental age may differ depending on culture and setting. Culture and setting are important because of the differences in the potential for social interaction. Children and young people who have more opportunities for interaction may have better self-expression skills and abilities. For such reasons children in the United Kingdom (U.K.) can self-report from the age of five, yet in African countries like Uganda the age for self-reporting is about seven years. This makes the process of conducting research in multiple countries more labour intensive, so one must plan carefully around this and ensure that it is given due consideration.
When it comes to choosing the most appropriate methods for data collection, one must choose from a rich basket of options holding the children and young people in mind. For example, observations work well with very young children and those who may not be able to speak. The use of talking mats has proven useful for children with speech disabilities and so it helps to work with experts in disability, play therapists and those in education to advise researchers on the best methods. Based on my experience and that of associates in the U.K., Belgium and the Middle East, younger children (5 to 8 years) should have shorter interviews as compared to older children and young people, though this may vary depending on the cultural context, as mentioned earlier. For any engagement with children and young people the language used should be adapted to their individual needs but in general it should be simple and easy to understand. I find asking adolescents and teachers to peer review the materials for appropriateness of language to be very rewarding.
Based on my field experiences in Africa, I have learnt some rules of engagement during the data collection. It is rewarding to start off with some folk songs or age-appropriate play as part of the rapport and trust building process. This engagement should continue throughout the data collection process (and some interludes during the interviews are recommended) and so the drum and folk songs in between the interviews are a great tool for keeping the children engaged in African settings.
It is also important to be mindful of culturally sensitive questions or phrases which may distress the children and young people. For example, in the African culture most people may not want to talk about death, so one needs to avoid the use of sensitive terminologies like ‘end-of-life’ to avoid distress. I recall a young participant who became distressed because of this. At this point I realised the importance of having a study ‘distress protocol’ and I created one. This document stipulated what should be done incase a participant developed distress as a result of our interviews, and we had clinical psychologist and a child counsellor on site to provide the crisis counselling and support.
It is also important for quality assurance to train the researchers to boost their confidence and core competences in engaging with children and young people– and an individualised approach is essential. Some children may feel insecure sitting in interview rooms without their caregivers, so flexibility around who is in the room should be considered, as long as the child remains empowered to use their voice. A choice of interviewers also helps, as this gives the children the choice to go with what gives them comfort. A colleague from the Middle East also noted that the way we dress matters, so fancy dress may impress the children if you wish to add some flavour to the interview interaction experience. At the end of the interview, children should be appreciated with an age-appropriate gift if possible. This is some work and it takes effort and courage to carefully choose the right gift but let us appreciate the children for taking part!
One may ask how I hold the fort, ensure that the best practices are well adhered to but also continue to learn the best way to engage with children and young people? I learnt from colleagues in the UK that is useful to have an advisory board which should include children and adolescents to keep an eye on how things are going and what can be done better.
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.
- Read the special series about the EAPC 12th World Research Congress Online on the EAPC blog.
- 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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