Commentary by Dr. Justin N. Baker, MD, FAAHPM
Feature Articles: Levy, K., Grant, P. C., Tenzek, K. E., Depner, R. M., Pailler, M. E., & Beaupin, L. K. (2019). The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program. The American Journal of Hospice & Palliative Care., 1049909119879413(02).
Other articles referenced: Levy, K., Grant, P. C., Depner, R. M., Tenzek, K. E., Pailler, M. E., Beaupin, L. K., Breier, J. M., & Byrwa, D. J. (2019). The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention. American Journal of Hospice & Palliative Medicine, 36(7), 557–563.
“She was going for her surgery and I was very scared. This (photo) is her telling me that everything is going to be okay. I felt like I had to be strong and that day I was not—she was being strong for me. That day something inside of me changed. I don’t feel that I have to be strong all the time …I can cry sometimes in front of her.”
The TPPCR issue this month is FULL of fabulous work. At first it was difficult for me to determine which of the manuscripts to choose for full commentary. Once I read this piece by Levy, et al., however, it was clear to me that I needed to do my best to highlight this innovative work that shed light on pediatric palliative caregivers (PPCGs) in a way I had never experienced. As each of us witness everyday in our clinical work, PPCGs have physical and psychosocial difficulties including role strain, lack of social support, social isolation, and long-term health concerns. As Levy, et al report, “They are left at a constant disadvantage due to their unique life circumstance of becoming a caregiver before fully integrating into society. Further, as they represent only a small subset of caregivers, they are often inappropriately judged and misunderstood by their communities.”
The study team has previously discussed the feasibility of this intervention and I found its potential so intriguing.(1) When I read that manuscript I found myself imagining what my patients would share and what they would discuss. I truly was looking forward to reading the current publication and seeing if some of my “hypotheses” regarding content would be supported by their data. None of the themes surprised me as they likely do not surprise you either. The longer I work in this field the more I have recognized that themes such as “Love”, “Challenges”, “Uncertainty”, “Loss”, “Coping”, and “New Normal” seem almost universal in our patient population. What I do find inspiring and quite novel is the approach that was used to better understand the experience of PPCGs as I could see this feasibility and descriptive study being a significant intervention as well.
Social media is clearly an ideal platform for potentially distributing an intervention to the PPCGs we serve. More than 1/3 of the global population is on social media and more than half of these people report being active daily. Social media is already being used as a platform for several interventions, including smoking and health promotion so why shouldn’t we be thinking about how to use it in our field? I feel like the study team has done a wonderful job helping us to begin to think of all the potential possibilities of a social media platform instead of what it seems we have done in the past which is to shy away from using social media in this way due to the many inherent complexities.
Although the study team has published on the feasibility and thematic contents from The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG), I find myself right back to the last time Levy et al., published on this topic – looking forward to their next publication on the large-scale intervention results. Additionally, I am deeply grateful to the study team as instead of dreading the thought of navigating the complexities of social media in our patient population, I now find myself dreaming of the next intervention our team might be able to provide through a social media platform.