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.
Feature Article: Stephenson, E., DeLongis, A., Steele, R., Cadell, S., Andrews, G. S., & Siden, H. (2016). Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems. Journal of Pediatric Psychology
Health in siblings of seriously ill children has been a long term interest of our group of researchers and clinicians. Our work with dying children focuses mostly on the sick child and their parents. We know that healthy siblings of chronically sick children struggle to maintain normal psychological functioning like their peers. It is important to understand what siblings experience when their brother or sister has a life-threatening illness.
This article was written using data from our Charting the Territory study with 258 families of children with life-threatening conditions in Canada and the US. Early data analysis showed that when reporting problem behaviours for their healthy children (siblings to sick children), parents reported more internalizing issues (e.g. anxiety and withdrawing) than normal for these children at baseline. These problem behaviours normalized for the most part over time. There were no significant differences between boys and girls on behaviour problem scores demonstrated in our early data analysis.
What our lead author Ellen Stephenson adds in this article is a fascinating look at how mothers can influence the behaviour of healthy siblings. In her analysis, Ellen and our psychosocial research team explore whether mothers who report post-traumatic growth have children with less behaviour problems.
Post-traumatic growth is experienced as an adjustment or change in the face of adversity. Through our research we have learned that growth is not due to an absence of trauma or difficulty, but rather to the new growth and resilience that comes from surviving hard times. It is the nature of caregiving that having a chronically sick child is difficult. Interestingly, however, mothers who experience post-traumatic growth while caring for a sick child are able to pass some of the benefits on to their sick child’s healthy siblings.
What is super interesting about our findings is that the siblings themselves report a decrease in problem behaviours when their mothers report higher scores in the ‘relationships with others’ domain of post-traumatic growth. This confirms that on at least some level, the healthy siblings noticed a change in themselves that could be predicted by their mother’s post-traumatic growth scores. It is possible that when one member of the family experiences relationship-focused coping from post-traumatic growth, it may impact other members of the sick child’s family in a positive way.
It would be interesting in our next study to look at whether healthy siblings themselves experience post-traumatic growth and what impact that has on their quality of life and behaviour over time.
Dr. Hal Siden
This month’s blog post features commentary by Dr. Hal Siden on his article, “Charting the Territory: Children and families living with progressive life-threatening conditions”.
Feature Article: Siden, H. & Steele, R. (2015) Charting the Territory: Children and families living with progressive life-threatening conditions. Paediatrics & Child Health.
Why did we write this article? Rose Steele and I wanted this article to be a high-level summary of preliminary findings, and in some ways, a companion to our Protocol article from 2010 (BMC Pediatrics 2010;10: 67.) where we describe the research protocol.
We also thought it would be useful to describe a large research undertaking that many of the contributors to this special issue of Paediatrics & Child Health were also a part of: Liben and Rapoport (editors), Davies, Spicer, Vadeboncoeur, Macdonald, Friedrichsdorf, Grégoire (authors). While ours is not the only research article in this issue- see “Quality indicators for paediatric palliative care” by Charlebois and Cyr from Sherbrooke – this CTT article represents a substantial undertaking that resulted in an enormous database.
Our next steps are to engage collaborators such as Dr. Anita deLongis of the UBC Psychology Department and her PhD student Ellen Stephenson, who are now are looking at how the siblings are doing. Stefan Friedrichsdorf is examining medications and symptoms. Dr. Liisa Holsti from UBC Occupational Therapy /BC Children’s Hospital and her colleague Sandi Tatla have been examining children’s function as shown in the annual PEDI evaluations.
This is a good opportunity for members of our PedPalASCNet team to once again think about inquires that they would like to undertake. What questions might arise?
Looking forward to hearing ideas.
Featured Article: Siden, H. & Steele, R. (2015) Charting the Territory: Children and families living with progressive life-threatening conditions. Paediatrics & Child Health.
Many children who are in pediatric palliative care have life-threatening diseases which are progressive neurological conditions (PNC). These children are typically affected by impaired central nervous system function and experience multiple physical symptoms including pain, seizures, and loss of mobility. Health care providers attempt to prevent and relieve symptoms however, little is known about patterns of symptoms in these rare diseases.
A recent article from our Charting the Territory study used clinical data collected over time to examine the symptoms these children experienced. Each child on average had 3 reported symptoms with the most common ones being pain, sleep problems, and feeding difficulties. Children with assisted feeding devices such as G/J tubes and children who require extensive home modifications due to mobility issues had, on average, more symptoms than those without.
As many children with PNCs are not capable of speaking, parents are the ones communicating symptoms they observe to their child’s physician. However, there is a discrepancy between the symptoms parents and clinicians reported; clinicians tended to report fewer symptoms. There are multiple possibilities for this inconsistency. Clinicians may only report symptoms that they are confident in treating or they may not assess a certain symptom because they cannot directly ask the non-verbal child. Alternatively, parents may be overemphasizing symptoms if a particular symptom is especially distressing to their child.
What this study tells us is that extra attention needs to be paid to symptoms of children with PNCs, especially if they have G/J tubes and mobility issues. Symptoms can provide insight into an underlying problem. Knowing the frequency and severity of a symptom can provide insight into its nature and help identify an appropriate treatment. Furthermore, clinicians need to be mindful of how parents report their child’s symptoms. It would perhaps be helpful to ask why parents are concerned about a particular symptom in order to address their and their child’s needs.