Parenting a child with a life-threatening illness like cancer is associated with unique demands and simultaneously raising healthy siblings can add another layer of complexity.
In order to further understand parenting of healthy children as well as children facing a life-threatening illness, Kim Mooney-Doyle from the University of Pennsylvania School of Nursing, conducted a mixed-method study where she interviewed 31 parents of 28 ill children with healthy siblings about their parenting practices.
Using qualitative descriptive methods, the parents were asked to describe their parenting style in the context of pediatric palliative care, how they prioritize aspects of parenting both ill and healthy children, and how they balance the needs of all of their children.
A few themes among families emerged from the data, including a desire by parents to maintain an emotional connection with all of their children; how parents use cues from their children to develop their parenting strategies; how parents change as a result of caring for a child with a life-threatening illness, and how parents strive to diminish suffering for all of their children.
Mooney-Doyle recently sat down with CURE to discuss her findings and offer advice to families in this situation.
CURE: What made you decide to conduct this study?
Mooney-Doyle: As a pediatric oncology nurse, I was really interested in understanding what it's like to be the parent who has to make decisions for their children with life-threatening illnesses. Specifically, I wanted to understand what is it like to be their mom or dad who has to make these end-of-life decisions, whether it be enrolling in a phase 1 clinical trial, deciding to enact a do-not-resuscitate order, or deciding to enroll in hospice. What is that like from a parental perspective?
We know about siblings of children who have survived cancer, we know a little bit about siblings of children who are on active treatment, and we know about bereaved siblings. But what about that other group of siblings where the care for the ill child might be increasing or the life threat is increasing, and families may be forced to draw closer into care for that other child because of the caregiving needs or because they're expected to die? What's the experience like for those siblings, and how can we help the parents meet all of their children’s needs? And parents really wanted to know about this — about their other children — because they knew what they needed to do for the sick kids. They weren't quite as sure what they needed to do for their other children.
What were some of the key findings?
What I found was that parents of a child with a life-threatening illness as well as healthy siblings describe parenting in the context of pediatric palliative care very differently. They may have the same overall goals — they just want their children to feel connected to the family and know that they are loved — but how they practice that might be different.
For their ill child, many of their priorities, rightfully so, were focused on illness management. Their trajectory of parenting almost looks like a curlicue where they would take care of their child and then the child would have an exacerbation of their illness or they'd relapse. The parents would then have to configure new skills into their parenting repertoire that would maybe increase their caregiving load and draw more attention to maintaining that child's health. They would incorporate that into family life, and they would be expecting the next kind of downward slope.
For their healthy children, they expected them to survive to adulthood, and they expected them to do the normal things that kids do. As one mother put it, she talked about having to think about discipline and instilling good manners in her healthy son, whereas for her ill child, she didn't know what tomorrow would bring. So for the healthy siblings it’s more of a stepwise progression rather than a curlicue. Sometimes they plateaued; kids were having trouble, especially with what was going on with their sick sibling. Sometimes they would go back, but they expected this kind of normative trajectory. And you can imagine the psychological distress that that could potentially cause for parents when you're parenting in two different places — children are sick in the hospital, children are at home.
How is the parenting dynamic in single-parent households?
I did have several single parents in my study, and what I found was that they had the same goals — they wanted their children to know that they were loved, and they wanted to meet every child's needs. But the caregiving burden fell on them, so they felt like they had to be in multiple places at once. For example, one mother described needing to be at the hospital with her baby who was sick and having the toddler with her because both of them were little and needed her attention, but she also had two adolescent children. One of them had to fend for herself a little bit. She depended on families in the neighborhood and friends to help meet her needs, but yet she would travel a great distance to get back home to see that child's sporting events. She didn't have another caregiver or another parent to balance that load. She felt like she had to shoulder everything, which is extraordinary work for one person to do, let alone two parents or other caregivers in the house.
Where can these families turn for help?
Nurses can have such an impact because when you're there with a family over the course of their child's illness and you're working on the floor with them for 12 hours, 8 hours, starting to tease out these stories is important. I'm taking care of, say, Jane who has pediatric cancer. I can ask her mom, "Well, tell me about your other kids?" and "What's important to you in being this kid's mom?" I think just starting the conversation with parents to help them realize it's OK if they're struggling, if they feel like it's hard. We often pat parents on the back for incorporating more of the caregiving work into their care for the child, and we pat them on the back when they can do this extraordinary work to take care of the kids, whether it's changing central line dressings or maybe taking care of the child who is home on hospice with a ventilator.
But nurses can also ask, "How can we maybe connect you to community resources to support you in parenting your other kids as well?" I think nurses can start that conversation because we're in it with families; we're in the trenches with them.
Mooney-Doyle K, Deatrick JA. Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary [published online before print October 14, 2015]. Palliat Support Care.