The (slightly adapted) title for this opinion piece comes from a commentary by Sebastian Kraemer.1 Fifty years on from the Platt Report2 that influenced the way we work in the United Kingdom and elsewhere, Kraemer edited a paper given by the late Sydney Brandon in 1986 at the 20th anniversary Conference of the National Association for the Welfare of Children in Hospital (now Action for Sick Children a Children’s Healthcare Charity in the United Kingdom; http://actionforsickchildren.org.uk/). This paper traced the history of increasing interest in children’s welfare and parental presence in hospitals, a pathway described by Davies3 as one from exclusion, to toleration and parental participation in the care of the hospitalized child. “What seemed normal 50 years ago would now be regarded as naive, yet how will we view current practice 50 years hence”?1 (p177) What I would like to argue here is that there will be a significant difference in the “before and after stories” if we were to trace a similar history in the care of adolescents and young adults (AYAs) with cancer in hospital. Unlike the reporting of the care of hospitalized children that has focused in the main on parents’ perspectives,4 over the next 50 years the voice of the young person will dominate with respect to patient experience, service development, delivery, and evaluation5 (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216852/CYP-report.pdf).
Why, because if we are to provide care that really meets the needs of AYAs hospitalized in the 21st century, we must now focus all our efforts on seeking their perspectives to inform practice.3 The professional community that delivers care to AYAs is of the shared opinion that there is an overwhelming need to know what age-appropriate care looks like, who delivers it, where it is delivered, what aspects of delivery make a difference to outcome and patient experience, and how we best meet the needs of hospitalized AYAs and their family members/friends.6 Research must take center stage if we are to find answers to these questions, and AYAs must be active in that process because they are the experts on their care, have something salient to contribute to the questions we might ask, will improve the relevance of our research, will improve the quality of the research process, can contribute to a more valid interpretation of results, can improve how research is reported and disseminated, and can take a role in ensuring research has an impact and influences change.
How, well there are no absolute ways to approach the question, how far should I involve AYAs in my research? The simple answer is that they can be involved at any stage: it is about opening up opportunities to them for meaningful participation based on their own realities and enabling them to have a real impact on the way their care is managed and delivered.7 It is about building and sustaining a culture of participation in organizations and facilitating ongoing dialogue with young people rather than imposing fixed structures. Involving AYAs may mean taking risks and making mistakes and, I would argue, be part of the process of getting it right. I thought in 2008 that “the tide may well be turning,”8 (p225) and I am now even more certain, by what we bear witness to in published work and journals such as Cancer Nursing, that there is an increasing presence of the voice of AYAs.
So, unlike the years post Platt, where we relied on identifying important aspects of care from the perspective of parents as proxies for AYAs, we now have both policy and practice that will enable us to research young people’s experiences of care. In answer to the question: what is it really like to be a young person, in our hospital, at this moment? We can now be confident in saying: I don’t know, but I know who to ask.
1. Brandon S, Lindsay M, Lovell-Davis J, Kraemer S. ‘What is wrong with emotional upset’—50 years on from the Platt Report. Arch Dis. 2009; 94 (3): 173–177.
2. Ministry of Health, Central Health Services Council. The Welfare of Children in Hospital Report of the Committee. The Platt Report. London: HMSO; 1959.
3. Davies R. Marking the 50th anniversary of the Platt Report: from exclusion, to toleration and parental participation in the care of hospitalized the child. J Child Health Care. 2010; 14 (1): 6–23.
4. Coyne IT. Children’s experiences of hospitalization. J Child Health Care. 2006; 10 (4): 326–36.
6. Fern L, Taylor R, Whelan J, et al. The art of age-appropriate care: young people’s experiences of cancer care. Cancer Nurs. 2013; 36 (5): E27–E38.
7. Moules C Research with children who use NHS services: sharing the experience. In: Lowes L, Hulatt I, eds. Involving Service Users in Health and Social Research. New York: Routledge; 2005: 140–151.
8. Gibson F. Building a culture of participation: young people’s involvement in research. In: Kelly D, Gibson F, eds. Cancer Care for Adolescents and Young Adults. Oxford: Blackwell Publishing; 2008: 214–228.