Trends in Palliative Care Research 2022; Special Edition #02

Special Edition #02 focuses on research that examines the experiences of parents and their unique and rich personal perspectives caring for their child with medical complexity. This issue includes commentaries written by two parents, who recently participated in a virtual journal club hosted by the Siden Lab at the BC Children’s Hospital Research Institute. They have both graciously taken the time to reflect and provide their thoughts on two recent research articles that examine the parent perspective.

View the Special Edition #02 Citation List in the Library

View a PDF of the Special Edition #02 Citation List

Commentary by:

Candice Barrans, parent

Candice is a busy mother of two and a returning UBC student. Her eldest, Lorelei, is two-and-a-half, and her youngest, Ronan, is seven months old and has Trisomy 21. She lives in Coquitlam with her husband and mother. The family of five can usually be found in their rooftop garden or participating in local cultural activities.

Featured Article:

Shaw, K. L., Baldwin, L., & Heath, G. (2020). “A confident parent breeds a confident child”: Understanding
the experience and needs of parents whose children will transition from paediatric to adult care.
of Child Health Care.

In reading for the recent parent journal club, this article left the biggest impact on me.

As a new parent myself, I felt the frustration and concern in the voices of the parents of this study; that desire to protect my children and the willingness to pause my development to prioritize theirs. I could absolutely commiserate with the parents, as it seemed they did with each other. With each parent’s anecdote, though, a lump of guilt slowly began to form in my throat. I knew, as every parent did, that for every frustration I have felt in parenting there is a child that is equally frustrated in being parented.

What was the voice on the other side of these statements trying to assert? Who was peeking through behind the parents’ paraphrasing? What did their children say to evoke these statements from the parents in this study and what did the children feel about their parents’ responses? How much of these comments were based in concern for the children and how much were simply the captured internal struggle of the parent consolidating their visions for their children? Why were the children’s voices left unheard? The role of the parent is dependent on the contextual relationship with their child; when a study mutes the voice of the child it ambiguates the power of the child in this relationship, oversimplifying the conflict faced by parent advocates and uncentering focus from the child patient.

Parenting, as I have learned in my brief 2-and-a-half-year crash course, is a reactionary role. You meet this tiny enigma that is a baby and are told you are responsible for them to meet their presently undefined potential and overcome their unforetold struggles. All this with, usually, no prior experience. So naturally, as parents, we draw on other experiences, on ideas of success and, inevitably, comparison to others and standardized timelines. There are countless more poetic definitions of parenthood and they are not something I aim to summarize here; my point is, becoming a parent is a role birthed from a new relationship between parent and child, two lives that inevitably become enmeshed and informed by the world around them.

As stated, parenting is a reactionary role; it requires the child’s voice to contextualize the parent’s response. The model used for this study, a discussion group for parents, took parents out of the context of their relationship with their child. This format removed parents’ accountability to their nearly adult children, or any chance for the children to make a rebuttal to their parents’ comments and, ultimately, removed the ability to discern the real rather than the perceived struggle for either party in the parent-child dynamic. Like the idiom says: “There are two sides to every story; the truth is somewhere in between.”

This loss of context strips the child of the power they hold in their life and the weight they deserve to have in the decisions of their future. Within the study, this loss of context removes the struggle parents face in trying to support their children while overcoming their own wants for their children’s needs. For example, the comments regarding some children’s struggles to marry or have children, these parent concerns fit a very narrow definition of family dynamic and potential life outcomes for a child. Are these truly struggles for the children or are these struggles of ideologies between parent and child?

Outside the study, the apprehension I have as a parent to a medically complex child, who will likely have to strive even more than other children to be heard in many settings, is that this study, like many others aimed at aiding the ecosystem of pediatric patients, placed the child’s voice on the peripheries of the conversation. This study empowered the parent’s voices that spoke about their children rather than with their children with medical complexities. The children weren’t even in the room – parent voices had no immediate accountability to their children, the patients, and the parents’ unchecked voices were published in an authoritative context without opportunity for rebuttal.

This loss of context and ambiguation of the patient’s voice can be overcome; we simply need to center their voices. Start with the patient. If the study began by framing the patient and their concerns (or lack thereof) in transition to adulthood and captured the reactions of the parents, context would have been present, power of the patient would have a better chance of being preserved in the study, and this would have given depth to the struggle patients and their parents face in transitioning to adulthood.

This study could go one step further: a great way to normalize some of these results would be to also include non-medically complex young adults. This study analyzes a marginalized group only within themselves, in this case, medically complex children. When we do this, we risk conflating traits or struggles of individuals as symptoms of their marginal identity, rather than traits and struggles indicative of the intersections of life which they find themselves in, young adulthood. Many of the paraphrased comments from children in this paper are not abnormal for young adults. By not comparing this group of children (and their relationship with their parents), with children without medical complexities, we cannot normalize their concerns and fears. For instance, again drawing on the example of the comments regarding some children’s struggles with the concept of marriage or having children; gender identity, ideas of marriage or even the idea of having children as a young adult don’t strike me as unique to the subjects of this study. This normalization through comparison of two cohorts of young adults, one with medical complexities and one without, has the potential to create much more nuanced commentary.

I am thankful to the Siden Lab for the opportunity to share my insights on this paper, and to you, dear reader, for listening.

Commentary by:

Michelle W., parent

Michelle lives in Toronto, Canada with her husband, 11-year-old son and her teenage daughter, who has complex health needs. She has been involved as a patient partner on several hospital improvement and patient-oriented research projects to help providers better understand the patient perspective and to improve supports for children with medical complexity.  

Featured Article:

Hoang, K., Halpern-Felsher, B., Brooks, M., & Blankenburg, R. (2020). Shared Decision-making With
Parents of Hospitalized Children: A Qualitative Analysis of Parents’ and Providers’ Perspectives.
, 10(11), 977–985.

This article was discussed by patient/caregiver partners during a recent online journal club. Having been involved in the Ontario health system, and as a supporter of a medically complex child for over 13 years, this article resonated with me. It highlighted the disconnect between patients/caregivers and providers, and served as a reminder to me that we still have a long way to go before we can achieve effective shared decision-making and true patient and family centered care.

A barrier to shared decision making (SDM) that was identified in the article included a lack of education around the topic – specifically about how to conduct SDM and when it is appropriate to conduct it within a hospital setting. Other challenges mentioned were the lack of health literacy on the family’s part and the stress of a child’s hospitalization being a limiting factor on caregivers’ ability to participate. I agree with each of these points. Without consistent and standardized training, there is a risk of physician bias. On the health literacy side, I have spent years acquiring medical knowledge about my child’s condition, learning how to objectively present the facts to my daughter’s health care team and practicing how to keep my emotions in check, despite constant worry and stress. When we are in a hospital setting, I am with my daughter the entire time, and I have learned to ask when rounds will be so I can be prepared and available when the team arrives. None of this would be possible if I did not also have what may be referred to as ‘health privilege’. I am fortunate to have been born in Canada, which lends to an ease in understanding the language and the culture. I have a husband who has flexibility within his job, to allow him to manage things at home and care for our other child when we are away. My daughter does not have developmental delays and can articulate her symptoms – she and I have the confidence to actively participate in health discussions with multiple providers. Together we are constantly learning and adapting to what the system requires of us, since it is not designed to be flexible or to meet patients and families where they are at.

I do not necessarily agree with the assumption outlined in the article that it is easier to engage in SDM with more experienced parents. Despite having 13+ years of experience, we still find it incredibly difficult to engage in productive health discussions with our providers. I believe this is due to the fact that despite our health teams’ best intentions, we have still been experiencing a relatively paternalistic approach to care, and when an answer is not known, we are simply referred elsewhere. Recently, we have been advocating for our health team to listen to ‘evidence’ directly from my daughter, and from our daily observations, to help inform decision making.  She knows her body best, and it is important for her voice to be heard and valued in the SDM process.

My daughter is medically complex, and unique. Often, her body does not respond to the ‘gold standard of care’, so more tests are ordered or we are referred to more specialists. When additional team members are brought in, it can sometimes make the situation more complicated and hinder the ability for positive shared decision-making to take place. In one incident, where two specialties showed up at the same time for their consults, one physician bullied the other and we only heard the one perspective. We have also experienced needing input from multiple specialists to make an informed decision, but the doctors were simply not available at the same time to weigh in. In both of these scenarios, no decision could be made while in hospital, and we were instead discharged with a number of clinical follow ups, without a clear direction or management plan. 

From our perspective, in order to move the needle and engage in effective SDM for medically complex children in Canada, we first need to look at designing a system that can support decision making involving multiple specialties. This would mean having the right people available at the right time and having everyone’s opinions, including the patient and caregivers, be equally heard and respected.