Dr. Kimberley Widger
Feature Articles: Rahimzadeh, V., Bartlett, G., Longo, C., Crimi, L., Macdonald, M. E., Jabado, N., & Ells, C. (2015). “Promoting an Ethic of Engagement in Pediatric Palliative Care Research Ethics, Organization and Policy.” BMC Palliative Care 14, no. 1. doi:http://dx.doi.org/10.1186/s12904-015-0048-5.
Hudson, B. F., Oostendorp, L. J. M., Candy, B., Vickerstaff, V., Jones, L., Lakhanpaul, M., Bluebond-Langner, M., & Stone, P. (2017). “The under Reporting of Recruitment Strategies in Research with Children with Life-Threatening Illnesses: A Systematic Review.” Palliative Medicine 31, no. 5: 419–36. doi:http://dx.doi.org/10.1177/0269216316663856.
As I face a summer of writing grant proposals for new research projects – two papers from the June list of citations particularly caught my eye. Both are focused on how we do research in pediatric palliative care.
The first paper, Promoting an Ethic of Engagement in Pediatric Palliative Care Research, calls for greater involvement of children and adolescents with life-threatening illness in research. The authors highlight the American Academy of Pediatrics’ assertion that “the goal of palliative care is to add life to the child’s years, not simply add years to the child’s life” and suggest that the child’s perspective is required to know whether or not that goal has been achieved as well as to guide development of services to meet that goal. The authors provide a helpful review of ethical frameworks that can be used to promote or justify increased participation of children and adolescents in palliative care research. This paper can certainly be used for both grant proposals and Research Ethics Boards applications to highlight the centrality of children’s perspectives to advancing our knowledge about pediatric palliative care.
However, Research Ethics Boards and granting agencies don’t just want to know about the theories behind the need and ethics related to research with children, they also want to know the practicalities of how potential participants will be approached and whether the needed sample size can be achieved given the available population. The second paper, The Under Reporting of Recruitment Strategies in Research with Children with Life-threatening Illnesses: A Systematic Review, unfortunately highlights the lack of evidence to guide researchers in addressing these areas. In their review of pediatric palliative care research published in the last 5 years, the authors identified 215 relevant studies; however, in nearly 80% of these studies recruitment rates could not be calculated. There was also very little information about the recruitment process, thus the authors could not extrapolate information to guide other researchers on the best practices in recruitment for this population. As well, there was little information provided about why participants chose to take part in research or whether they found participation to be burdensome. All of this type of information would be incredibly helpful for researchers (like me!) looking to design studies that will include the perspective of children. This information could be used to anticipate and address potential concerns of Research Ethics Boards as well as clinicians who are often the gatekeepers to accessing this population. Hudson and colleagues notes that restrictive journal word limits may be one factor that prevents full disclosure of all aspects of the recruitment process as part of publishing study findings. Their suggestion to include this type of information as supplementary material along with a publication is an excellent one.
Including the perspective of children in pediatric palliative care research is an imperative that is not without challenges. Advancement in this area requires open reporting and sharing of both the successes and challenges of conducting research in this area, and hearing from the children themselves what it is like to take part in this type of research. I encourage the pediatric palliative care research community to collect and share this information in the body of manuscripts or as supplemental material so that we can learn from each other and continue to advance our field. Our patients and families deserve nothing less.
These info-graphics aim to categorize and communicate patterns found in PedPalASCNET’s monthly Trends in Pediatric Palliative Care Citation Lists (March-December 2016). We hope to inform the pediatric palliative research community about which journals are being published in most often; the impact factors assigned to those publications; and the most commonly reoccurring subject headings and keywords. In future we will create similar reports 1-2 times annually.
Methods and Limitations
Every article from our monthly lists were grouped together and analyzed in OpenRefine according to their journals of publication, authors, publication years, subject headings and keywords, and impact factors. This involved pulling metadata from multiple databases, including PubMed, UBC’s Summon search engine, Web of Science, and Science Direct. To avoid duplication we clustered the keywords and subject headings together under appropriate terms (typically a MeSh term). Subheadings were included under their main subject heading; for example, “palliative care–psychology” was included under “palliative care.” Worth noting, we did not include the articles from our oncology or developing world lists, and terms for population group were excluded from the visualization for subject headings and keywords.
Out of 235 articles, 51 did not have subject headings or keywords, and certain publications had a very low percentage of articles with terms assigned. For example, 30 out of the 38 articles from the Journal of Pain and Symptom Management had neither. Duplicate articles were found in several of the months and were deleted accordingly. As a result, the total citation numbers from each month were not accurate and were excluded.
In total we found 235 articles from 104 different journals. The most prevalent patient populations are “infant/infant, newborn” and “child.” Notably, “ethics,” “decision making,” and “attitude of health personnel” appear among the top 20 keywords and subject headings (figure 3). The majority of articles were published in 2016 (figure 2). This mostly comes as a result of our research team preferring the most recent scholarship for the monthly lists. Lastly, we found that the most popular journals in the field (figure 1) do not necessarily correlate with the journals which have the highest impact factors (figure 4).
Trends in Pediatric Palliative Care Research (TPPCR) is a listserv distribution that aims to collect new and exciting research into a monthly list for anyone with an interest in pediatric palliative care. The hope is that these articles will not only contribute evidence to the practice of pediatric palliative clinicians, researchers and trainees, but also spark conversation and debate on these topics. To facilitate this discussion every month a commenter writes a blog post on one (or more) article from the list, often tying it back to their own practice or research. The commentary helps to highlight articles that may be of particular quality or interest.
Creating the list was a collaborative and iterative process. We derived inspiration and sook advice from other librarians and institutions that have experience creating similar lists to learn more about their search strategies and process. Multiple test lists were evaluated and assessed by the clinician-researchers based on their own experience and interests. This was very helpful to me, the librarian, as it helped extend my own understanding of the field, and I was able to edit the search strategies and the way we filter the results based on these discussions.
In the interest of access and collaboration we share our citation list on our blog so others can use or translate the strategies for their own needs (for instance an individual student project or a library working group). As the list has grown we have extended the scope of databases we search to include a broader range of topics and formats. They include: Web of Science for conferences, Cinahl for nursing and allied health, and PsycInfo for its focus is psychology and social sciences.
Even in a sub specialty field such as pediatric palliative care, with a small population and a limited research production, it can be difficult to keep up to date with newly published literature. The TPPCR list is filtered to remove articles that focus solely on specific treatments and cures or are localized in a particular place. Instead the focus is on articles that can be used across the population or deal with broader psychosocial themes. Our hope is that everyone who reads the citation list and commentaries finds at least one article that sparks their interest and helps them to engage in the field of pediatric palliative care research.
Dr. Chris Vadeboncoeur
Feature Article: Wilkinson, D. & J. Weitz. (2016) Dying later, surviving longer. Archives of Disease in Childhood.
I chose this article because over the past several years, this trend has been evident in my institution. The objectives of training in the subspecialty of Pediatric Critical Care Medicine provide the following definition of the subspecialty training program:
“Pediatric Critical Care Medicine is a field of medicine concerned with infants, children and adolescents who have sustained or are at risk of sustaining life threatening, single or multiple organ system failure due to disease or injury. … seeks to provide for the needs of these patients through immediate and continuous observation and intervention so as to restore health and prevent complications. … competent in all aspects of recognizing and managing acutely ill pediatric patients with single or multiple organ system failure requiring ongoing monitoring and support.”
This definition fits well with the critically ill infant or child, whether previously healthy or with a previous history of complex health needs. Many of the former and a few of the latter children who receive this acute care recover quickly and return to their previous baseline or close to that status. Unfortunately, some do not, and a subset of these less fortunate children are the topic of the review discussed in this editorial.
The challenge arises when this latter group of children remains in the intensive care setting for prolonged periods of time. The article and editorial look specifically at the subset that die, but there is perhaps a larger group who survive, with a long intensive care stay, then a long hospital stay before they eventually go home. The moral distress which sometimes arises can affect the care given to the children who die after a prolonged stay, but also the care given to the survivors and their families. The editorial suggests that if the children who will eventually die could be identified, the care provided could be better informed and interventions which will not achieve benefit could possibly be avoided. Whether it could also benefit the moral distress felt by those caring for the children who will survive remains to be seen.