Commentary by:
Dr. Andrea Johnson, University of Toronto
Dr. Johnson is a postdoctoral fellow in the Faculty of Nursing at the University of Toronto. She has worked in pediatric palliative care at Canuck Place Children’s Hospice for the past decade and is committed to advancing palliative care practice for adolescents and young adults living with advanced cancer.
Feature Article
Peake, J. N., Beecham, E., Oostendorp, L. J. M., Hudson, B. F., Stone, P., Jones, L., Lakhanpaul, M., & Bluebond-Langner, M. (2022). Research barriers in children and young people with life-limiting conditions: a survey. BMJ Support Palliat Care, 12, e715–e721.
Commentary
In this article, Peake and colleagues describe results from their survey of 61 chief investigators (CIs) across the UK who conduct research with children and adolescents living with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs).1 Various systemic barriers to patient and family recruitment and engagement were identified by participating CIs. I really appreciated that in addition to sharing challenges involving participant recruitment from this population, this study also asked participants about proposed solutions to mitigate or respond to these challenges. The solutions proposed by participating CIs reflect a commitment to authentic engagement and partnering throughout a research study. They highlighted inclusive involvement of young people and their families throughout every phase of research and the need to foster early inclusion of both young people and of clinicians early within the research process.
What drew me to this article was the CIs experiences of working with clinicians to recruit patients living with life-limiting conditions and life-threatening illnesses. In this study, 32% of respondents reported the working relationship with clinicians as extremely effective and 51% reported it as effective. However, in the open-ended questions of this survey, many discussed challenges with researcher access to patients and families and clinician gate-keeping for recruitment of this population. The participants’ comments about clinician gate-keeping closely paralleled my experiences as a doctoral student conducting research with adolescents treated for cancer. Recruiting adolescent participants for my study relied on oncology clinicians’ referrals which involved much more clinician gatekeeping than I had anticipated at the outset of this study. Clinicians decided who to recruit and who they perceived as most appropriate to recruit. To protect patients, and to do no harm to them, are guiding ethical principles of health care practice. Within a research context, there is often a tension between protecting them from harm and facilitating opportunities for patients to contribute to new knowledge or understanding.
Reflecting on the culture of protection within research with young people living with advancing disease or a serious illness, I came to understand that in the health care context within which my doctoral research was situated, the clinician protectionism I experienced grew from a close companioning stance that clinicians embodied with adolescents diagnosed with cancer throughout the trajectory of their treatment. Clinicians cared deeply for these adolescent patients and closely accompanied them throughout their cancer treatment. Although clinician companioning with adolescents is an expected outcome during cancer treatment, within research recruitment, it suggests a paternalism of authority that removes the autonomy of adolescents to decide if they want to participate in specific research studies. German philosopher, Hans-George Gadamer, writes that authority requires an active acknowledgement by others of the knowledge that one possesses.2 In this sense, honouring authority is not obedience to another, but rather a decision to acknowledge another’s knowledge. The authority of clinicians is privileged within the context of research recruitment: clinicians have knowledge of adolescent patients. However, to really advance practice with this population, to expand what is understood, and perhaps most importantly, to respect the integrity of the human experiences of this group of young patients, their authority, and the knowledge they possess as active agents, must be honoured within research activities.
Adolescents and young adults with cancer are expressing more direct statements of wanting to be involved within research as participants and within the planning of research involving young people their age with cancer.3 In my study, across the age-range of 13-19 years, the adolescents who participated listed the following reasons why they wanted to participate: wanting to help other adolescents, wanting to contribute their experiences to expand understanding of adolescent cancer, and wanting to change clinical care for people their age as they recognized significant gaps in the delivery of care. Although adolescents are considered a vulnerable group of research participants, this perceived vulnerability should not automatically trump their opportunity to consent or not to participate in research. Nearly twenty years ago, Berry offered a compelling commentary that palliative care patients should not necessarily be considered vulnerable in the context of research due only to living with advanced disease.4 Instead, each patient must be carefully considered as a fit for a study’s recruitment.
Finally, this article strongly alludes to the glaring gap of the voices of children and adolescents living with life-limiting conditions and life-threatening illnesses within extant research. These voices advance and improve the clinical care of this population and can help meet gaps in the current provision of care. Young people living with LLCs and LTIs are under-served and a poorly understood patient population. Included in this month’s citation list is a scoping review conducted by Abdelaal et al. that demonstrates current knowledge gaps in the palliative care of adolescents and young adults.5 Implicit in Peake et al’s article is the belief that barriers that compromise the direct inclusion of the voices of children and adolescents living with LLCs and LTIs must be minimized. As I move through my postdoctoral research which involves the voices and experiences of adolescents and young adults (AYAs) living with advanced cancer, this article has been a powerful reminder of the necessary time to consider how to involve this group of young people fully into this research and how I might minimize barriers that may prevent their research participation within my own research practice. Working with young people in all phases of research, and working with clinicians to overcome barriers, ensures the conduct of high-quality research that creates space for AYA voices to be expressed and amplified to impact care delivery.
Other articles recommended
1. Featured Article
2. Gadamer H-G. Truth and method (2nd rev.ed.) (J. Weinsheimer & D.G. Marshall, Trans.). New York, NY: Continuum, 1960/2004.
3. Schilstra CE, Sansom-Daly UM, Schaffer M, et al. “We Have All This Knowledge to Give, So Use Us as a Resource”: Partnering with Adolescent and Young Adult Cancer Survivors to Determine Consumer-Led Research Priorities. Journal of Adolescent and Young Adult Oncology, 2022;11(2):211-222.
4. Berry SR. For purposes of research, palliative care patients should not be considered a vulnerable population. Clinical Oncology, 2004;16(3):223–224.
5. Abdelaal M, Avery J, Chow R, et al. Palliative care for adolescents and young adults with advanced illness: A scoping review [published online ahead of print, 2022 Nov 9].Palliative Medicine, 2022;2692163221136160. doi:10.1177/02692163221136160.