Blog PedPalASCNET

This blog features expert commentaries on recent publications of interest in pediatric palliative care research. Our bloggers provide their personal take on an article chosen from our monthly citation list and discuss how it relates to trends within the field. To view our search strategy, click here.

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Trends in Pediatric Palliative Care 2017; Issue #7

July 11, 2017

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 Researchcalls 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.

 

 

What can reported symptoms tell us about caring for children with progressive, non-curable diseases?

June 12, 2015

Olivia Jang

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.

 

 


 

Does pediatric palliative care research really increase burden for parents?

May 21, 2015

Joanie Maynard

Featured Article: Steele, R., Cadell, S., Siden, H., Andrews, G., Smit Quosai, T. & Feichtinger, L. Impact of research participation on parents of seriously ill children. Journal of Palliative Medicine.

In the last few years, research in pediatric palliative care (PPC) has become more prominent in the literature, but institutional review boards are still offering little support to this type of research. The ethical arguments for and against research in PPC are great examples of the conflict between autonomy and beneficence. Parents understand the need for research in PPC and would welcome an opportunity to share their experience; yet, their voices are too often unheard because their child’s clinician is hesitant to introduce studies to them by fear of increasing burden. This paternalistic approach to medicine puts patients and their families’ autonomy at stake and also increases the gap in pediatric palliative care knowledge.

Concerns about research with vulnerable populations are unequivocally warranted. However, a recent article has shown that families with children who have a LTC experience positive effects from their participation in studies. Empowerment, catharsis and the sense of helping others were among the benefits of research participation. Yes, the experience of talking about a painful situation may exacerbate negative feelings for some parents, but this was only found in a small minority of participants, and often these parents expected such effects.

Although the arguments supporting the barriers to research in PPC are worth our consideration, we should not assume that participating in PPC studies will be too painful for parents. The clinicians’ role is to give parents enough information so they can make an informed decision about their participation in research. Parents have a voice of their own – please let them speak for themselves!