Elisa Castro-Noriega, statistician and healthcare researcher, Canuck Place Children’s Hospice
Bogetz, J. F., Trowbridge, A., Jonas, D., Root, M. C., Mullin, J., & Hauer, J. (2022). The Impact of Caring for Children With Severe Neurological Impairment on Clinicians. Clin Pediatr (Phila), 99228221099135.
Broden, E. G., Hinds, P. S., Werner-Lin, A. V., & Curley, M. A. Q. (2022). “I Didn’t Want My Baby to Pass, But I Didn’t Want Him Suffering Either”: Comparing Bereaved Parents’ Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit. Journal of Hospice and Palliative Nursing, 06.
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When I became a researcher in pediatric palliative care (PPC), I held preconceived ideas of what patients living with serious illnesses, their families and clinicians go through. It was only by listening and being in contact with their lived experiences and personal stories that I could better grasp the meaning and relevance of the work we do.
As a quantitative analyst, I usually work with numbers and trends that apply to populations rather than to individuals. While quantitative data provides critical insights to understand the broader context, we must incorporate the human experience to observe factors than can deeply influence emotions and have lasting effects on the lives of families and clinicians.
The articles by Bogetz et al. (2022) and Broden et al. (2022) prompted me to reflect on the purpose of our collective work in PPC and emphasized who is the beneficiary of this work. I am not a clinician, but I work alongside clinicians in a clinical setting that provides excellent holistic care for children and youth living with serious illnesses, as well as their families. In these articles, I found great insights about families’ and clinicians’ views and experiences that helped me conceptualize my work better. I believe these resources may help sensitize others in administrative or more distant roles to the experiences of those who provide or receive PPC.
Bogetz et al. performed a qualitative study exploring the personal impact that caring for children with severe neurological impairment (SNI) has on pediatric clinicians working in a tertiary pediatric institution in the United States. The researchers completed one-on-one interviews with 25 clinicians to understand the challenges they face as part of their daily work, and proposed a model for clinicians to identify positive areas of care that could aid in a deepened understanding of the families they serve, better care for their patients, and enhancement of their own self-awareness and wellbeing.
The article featured some clinicians’ quotes, which mirrored the narratives of my clinician colleagues, as well as my own experience of seeing glimpses of the lives of these families. For example, one of the interviewees said that parents “…show me videos of [their child] at their best, which I think is nice for me, because… doctors’ offices [are] a snippet in time… And I’ve had a couple of families that would just send me pictures or videos just because they thought I would enjoy it, and that’s my favorite.” Reading this paper made me reflect on how hearing accounts of this sort connects me with the purpose of my work, and I believe it is important to maintain this connection for people like myself who work in PPC but do not provide direct care.
Broden et al. used a mixed methods approach for their study. Almost 2,500 patients aged 0-17 years were enrolled in the RESTORE clinical trial across 31 PICUs in the United States. This trial evaluated a sedation protocol used on patients with acute respiratory failure needing mechanical ventilation.
Between 7 and 11 years after the trial, the researchers interviewed 8 parents of children who had been enrolled in RESTORE and had died in the PICU. They compared parents’ memories on the EOL care their child had received with the clinical data reported by nurses at that time.
The quantitative data showed that patients’ pain and sedation scores were indicative of comfort. Despite this, when parents were asked years later about their child’s experience, their recollections reflected pain and suffering aligned with the worst episodes rather than the average data recorded. By combining qualitative and quantitative analyses, these researchers provided a more complete picture of the EOL experiences of children in the PICU, and the long-term impacts on their families, highlighting the need to direct efforts to support families in navigating these painful and challenging times and their unique grieving experience. These findings correspond with what I have observed in my workplace, where a holistic approach is used, and a multidisciplinary team accompanies patients and families resulting in better outcomes. I have read and watched the accounts of many families on how these supports have helped them ease their suffering and shifted their lives for the better. This study highlights the importance of including family perspectives as a critical component of pediatric EOL care and PPC research studies, and of expanding the reach of PPC.
These two articles reflect the importance of integrating human experiences and highlight how clinicians and interdisciplinary teams can support families as well as themselves. These articles have also reinforced for me that fostering team empathy and understanding of family’s experiences and needs, and providing holistic PPC, are essential components in caring for children with serious illnesses.