“Families and us, we’re a team.” Pediatric cancer and caregivers at CHU Sainte-Justine

28 September 2023

“Families and us, we’re a team.” Pediatric cancer and caregivers at CHU Sainte-Justine

Andrea Saragosti is a social worker working with the hematology-oncology team, and Pascal Bernier is a mental health and psychosocial nurse clinician. Andrea and Pascal, both of whom work at CHU Sainte-Justine in Montréal, sit down with us to discuss peer support in the context of pediatric cancer.

Cancer (5)

Pascal, how does Ste-Justine approach the care of children with cancer?

Sainte-Justine has a very humanizing approach to care, placing the patient and family at the centre. I think that’s the profound nature of the approach of most of the people who work here. We don’t treat the disease, we care for it through a supportive, symptom-solving approach. With hematology-oncology in particular, we’re very much focused on people’s needs. I believe that this humanizing and decentralized approach enables us to offer quality care.

Andrea, is there a specific approach at Ste-Justine to supporting parents who are involved with their child?

Historically, the health of mothers and children has been at the core of the care offered at Sainte-Justine, the “mother and child university hospital center.” Today, realities are very different and have evolved considerably; it’s the parental relationship that counts. But, in fact, I prefer to speak of “family,” because it’s more inclusive. In some situations, it’s not the parents who are involved or most present in the cancer-stricken child’s care trajectory. This means that we need to consider all the people around the child, and it’s this group that we want to mobilize. This involves identifying the circumstances of these people, their resources and then, if necessary, seeking out complementary services. Families need us, and we need them. It’s in this way that we manage to function with the same interest in mind: the child. Families and us, we’re a team.

When a child is diagnosed with cancer, what happens to the parents and siblings? What steps are taken? Which departments and professions are involved?

As soon as the diagnosis is made, a lot of things start to happen, particularly in the medical and nursing spheres, with examinations and meetings with various specialists to clarify the diagnosis or the impact of the diagnosis. The announcement of the treatment plan often comes as a second shock, because of the intensity of the treatments under consideration or the expected duration. Sometimes, the treatment plan is spread over years, or just a few months. And sometimes extended hospitalization is required. All this has repercussions, and leads to a certain degree of disruption in the way families function. Medical, nursing, social and psychological support is needed to help families cope with what they are going through. There are many questions to ask, for example, about work. How can I organize my work? Can I skip work tomorrow morning? As self-employed workers, how are we going to pay our bills? All families faced with the news of pediatric cancer experience a number of stressors. At that point, the best person to help is the social worker!

So, Andrea, at what stage do you become involved?

More and more, as soon as the diagnosis is announced, the social worker becomes involved. Generally speaking, the social workers intervene right away, at least once. After that, we call on one or other of our colleagues, depending on the needs identified. Each patient, each family is considered on its own merits. There is no “magic formula.”

What do I do? Where do I start? It’s very challenging. A multitude of questions is added to an enormous mental and emotional burden. The whole situation is intense for the child and for the family. All this intensity needs to be managed! Working as a team, we discuss what we’re going to tackle first. Sometimes it’s possible to make a partial plan, but it’s not always that clear-cut. The family doesn’t know what to expect, and that can be very stressful. So we reach out to them. We don’t go from point A to point B. I’d say it’s more like a rollercoaster.

Are the words “caregiving,” “helper” and “caregiver” mentioned in this first meeting, Andrea?

Yes, those words are used right away, always. But I’ll tell you right now that this can be a challenge, because it makes the parents wear a double hat: parent “and” caregiver… It’s something that, here too, needs to be accompanied. When the family is in the hospital, surrounded by the team, it’s fine. But back home, it’s a different story…

Social norms, social pressure, vulnerabilities, marital tensions, financial difficulties… How are these issues addressed with families?

Andrea: There is a wide range of emotions involved. For many families, guilt is very prevalent. So we work to alleviate guilt.

Pascal: This question makes me want to talk about identity. In the caregiving experience, parents can also get lost between their role and their identity. Beyond being the parent caregiver, who am I? I was a woman, a man, a friend, all of which was lost in the experience of my child’s illness…

How do you link up with services outside the CHU that parents confronted with their child’s cancer might need, such as respite care, home care or financial assistance?

Pascal: Ah, that’s a challenge! The healthcare system is a very big wheel, in which there are many other little cogs. It’s not easy to tie all the services together at the same time. We are fortunate to have access to many in-house resources, but sometimes we have to call on outside resources. I’m thinking, for example, of families who live in the regions, for whom accommodation and transportation will be needed. Everything can be done, but it’s often very tedious to open up these communication channels with other resources.

Andrea: Let’s not forget that at CHU Sainte-Justine, we welcome families from all over Quebec. Sometimes we connect families with this or that resource, but sometimes we encourage them to look for resources themselves. I might call social work colleagues in Abitibi, for example, to discuss possible resources and collaborations. But we often lack the time to make the connection with community resources. So yes, it remains a challenge.

Pascal, a possibly difficult question: to what extent does helping parents to help their child with cancer contribute to successful care?

Oh, that’s an easy question! Parent in distress, child in distress, and vice versa. If we can help parents, we can help sick children. So, there’s greater success in providing care: in the medical treatment itself, but also in the reason why the treatment is given in the first place.

For Andrea Saragosti and Pascal Bernier, time is precious. A big thank you to both of them for dedicating their time to discuss this moving topic of conversation.

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