We sat down to chat with Jane Cassano, MSW, and Cindy van Halderen, MSW, about the role pediatric oncology social workers play in the care of children with cancer and their families. Jane is a past member of POGO’s Psychosocial Services Committee and Cindy is a past co-chair of that committee and former member of POGO’s Board of Directors. They work together at McMaster Children’s Hospital in Hamilton. Here’s what they shared.
Describe the role of a social worker and the specific practice of a pediatric oncology social worker. Social workers are skilled at assessing and helping individuals, couples and families who are faced with a variety of challenges. The social work role can be found in hospitals, mental health clinics, schools, child welfare and community service agencies, and private practices.
Pediatric oncology social workers are heavily involved in supporting children, and their families, facing both a cancer diagnosis and the demands of treatment. Ideally, we meet a family at diagnosis so that questions and concerns can be addressed from the outset. Some of the early interventions include assistance with employment issues and applying for benefits, and making referrals to community partners, like POGO for the POGO Financial Assistance Program. Throughout the cancer journey, we provide emotional support and counselling, and monitor how the child and family are coping. We also provide resources for any family member who may be struggling, especially siblings.
What difference do you think social workers make in the lives of kids with cancer and their families? Parents have identified that having a social worker has eased the burden of managing applications for government funding, employment benefits and community resources. There are many programs available in Ontario to support a child with cancer and their family, and they can be difficult to navigate. Social workers are skilled at liaising and advocating with community partners. Parents have said it is a relief to have someone who has knowledge about what is out there and can help them navigate it all.
In such a rapidly evolving field, how do pediatric oncology social workers stay current about the issues of childhood cancer?
Pediatric oncology social workers stay in close contact with community partners like POGO. Ongoing training and education through POGO keep us and our colleagues at other Ontario hospitals up to date with current practices and standards. Through POGO, we have a voice at the provincial level, working as part of a multidisciplinary team to ensure pertinent psychosocial issues are addressed and acted on.
They say, “teamwork makes the dream work.” How is that true for pediatric oncology social workers and POGO? Pediatric oncology social workers and POGO work hand in hand, especially when it comes to the POGO Financial Assistance Program. Families often experience financial distress when their child is diagnosed with cancer. Many parents need time off work and they lose income or there is a major gap before supports begin. Many families are travelling from a distance, which creates a financial strain. Some benefits of the POGO Financial Assistance Program are that it provides stays at Ronald McDonald House and pays for child care for siblings. This support is provided immediately, which is when the need can be the greatest. Families have told us this has made a world of difference.
Jillian Ross, RN, MBA, BScN, is now POGO’s Chief Executive Officer. Previously, Jill was the Director, Cancer System Quality Improvement Initiatives at Cancer Care Ontario (CCO) where she oversaw work on new models of cancer care delivery, quality measurement and system-level improvement initiatives. Additionally, she established new provincial programs and was instrumental in expanding and formalizing CCO’s approach to engaging clinicians in its work. Jill has worked in the hospital sector and other healthcare settings, holding positions as a frontline nurse and clinical educator, as well as leadership roles.
“Jill brings to POGO impressive expertise in patient care, health services administration, and policy and government relations, as well as a commitment to client-centred, data- and evidence-driven improvement in healthcare services,” says Stephen Goudge, President, POGO Board of Directors. “The Board has no doubt that under her leadership POGO will continue to see innovations in our programs, services, and community partnerships that benefit all of Ontario’s children with cancer, their families and the healthcare professionals who care for them. We invite our supporters to join us in welcoming Jill to POGO.”
Ms. Amanda Sherman, BA, MA, PhD(c), discusses her POGO-funded research study.
Your study looked at overprotective and overcontrolling parenting. Can you give us some examples of these two parenting styles?
I would define overprotection as a style of parenting that does not allow the child or emerging adult to experience stressful things. These parents might try to reduce harm even where the situation doesn’t require it. An overprotective parent might call their child’s friends to solve a problem or insist on driving them to destinations where they can easily walk or ride a bike. It is excessive care. Overcontrolling parenting has more to do with discipline and getting a child to behave in a specific way. A parent might say, “You can’t go out tonight because I don’t like some of your friends.” It is excessive control.
What is non-productive coping?
Coping strategies that are not effective in helping that person feel better (worrying, swearing,
avoidance and isolation, for example) are nonproductive because they may lead to more distress and anxiety. In children, one correlate of the development of anxiety disorders is overprotective parenting.
Are childhood cancer survivors more at risk for depression and anxiety?
When looking at levels of depression, we did not find that our sample differed significantly from normative populations; but we did find that anxiety levels were markedly higher than the general population—participants’ scores on our questionnaire were within one standard deviation from the mean score of people with anxiety disorders. That was surprising to me and something we don’t yet know how to account for. Maybe for this population so much of their childhood was focused on getting better, that learning to cope with stress was less important than getting by and managing their illness. Now they are emerging adults and they are facing the potential late effects of their childhood disease, as well as regular life stresses, and perhaps they are less equipped to cope. These are hard questions to answer.
Ms. Amanda Sherman, BA, MA, PhD(c) was the recipient of the 2013 POGO Fellowship Award. Her research focused on maternal overprotection/overcontrol and its relationship to coping strategies, anxiety and depression in survivors of childhood cancer. Her study looked at 109 survivors aged 18-30 attending the POGO AfterCare Clinic at Princess Margaret Cancer Centre. POGO AfterCare Clinics monitor survivors at regular intervals so that potential long-term effects of treatment can be identified as early as possible.
You are doing your PhD in psychology. How did your career path lead you to study childhood cancer patients?
I did a practicum placement with Norma D’Agostino at Princess Margaret, where I was doing therapy exclusively with young adult survivors of childhood cancer. We noticed that problems with lack of autonomy, separating from parents and non-productive coping strategies kept coming up.
What can we take away from this research?
Now that we have this evidence that says overprotective parenting and anxiety are an issue in this population, we can target those parents and teach them how to socialize coping in their children. Even the oncologist can spend five minutes asking the parents and children a few targeted questions to
determine if there is a bigger issue, flag it, and refer the family to a psychologist to help them develop better coping skills.
What do you hope will come from your study?
This is preliminary research but even posing the question is opening doors and people are looking for potential issues when perhaps they weren’t looking for them before. Next steps from a research standpoint: our measure of overprotective and overcontrolling parenting needs to be validated and the study needs to be replicated with a non-cancer control group. I want to disseminate this research any way I can.
What does this POGO Fellowship Award do for your career?
This grant has allowed me to have time, space and community to do research. What I have enjoyed so much about POGO is how open minded everyone is about psychosocial issues, and psychosocial development. It has been nice to be accepted and encouraged for studying these kinds of issues, and working with medical professionals has helped provide a different perspective. It has been humbling, rewarding and encouraging at the same time.
POGO works to provide the best care possible for all of Ontario’s children with cancer, in part, by identifying gaps in childhood cancer care. In recent years, a POGO priority has been to focus efforts on enhancing culturally relevant care for First Nations, Inuit and Métis (FNIM) children, as FNIM families often face barriers to culturally appropriate healthcare.
POGO’s focus has been on building relationships, identifying current opportunities to improve the care of FNIM children with cancer as well as opportunities that might result in a more efficient system, and assembling the expertise needed to assess the issues, gaps and advances anticipated.
In 2017, POGO collaborated with Cancer Care Ontario to launch Pediatric Oncology, a new course in the recently refreshed series of Aboriginal Relationship and Cultural Competency (ARCC) courses offered by Cancer Care Ontario. ARCC courses stress the importance for frontline healthcare professionals to understand and apply FNIM cultural safety to provide effective person-centred care.
POGO and Cancer Care Ontario know that cultural safety is a critical component for improving patient experiences and outcomes. Through video and text, the Pediatric Oncology course examines the differences between childhood and adult cancer, one family’s experience of the journey for FNIM children with cancer, and the role POGO plays in helping to navigate this journey with a unique whole-life approach to childhood cancer care told from the frontline experience of a POGO Interlink Community Cancer Nurse.
The 13 ARCC courses are ideal for healthcare providers, those working with FNIM people, and anyone who wants to better understand FNIM history and culture. The courses are interactive, free of change and open to anyone. Each course in the Self-Learning program has been certified by the College of Family Physicians of Canada for Mainpro+ credits.
Watch the video featured in Pediatric Oncology
Calvin’s illness was something we never could have anticipated. One weekend everything was normal. He was a healthy kid, skating and doing gymnastics. Then on Sunday he started complaining about a pain in his leg. We thought perhaps he had fallen while playing so we went to the hospital in the early morning, but his pain had subsided and we left without doing any tests.
The next day and night he screamed in pain again and we took him to our family doctor who sent us directly to The Hospital for Sick Children. He obviously had his suspicions but ironically, even though my husband and I both work in healthcare, cancer never crossed our minds. We thought for sure it was a broken bone or worst-case scenario a crazy virus.
On January 31, 2017, we heard the words no parent is ever prepared to hear. Calvin was diagnosed with very high-risk leukemia and given a four-year aggressive protocol.
As you would expect, everything in our family’s world turned upside down. Calvin went from being an active little boy to a very sick patient. My husband Michael and I made drastic changes to our work and home lives to take care of our son. And Calvin’s siblings, Quincie and Payton, had to make many sacrifices as they learned to navigate this “new normal.”
It is impossible to be prepared to tell your 5-year-old he has cancer. He kept asking, “What is happening to me? What did I do wrong?” We are both scientists and it was complicated for us to figure out what to say to him in a way that he would understand. We told him, “There was a mistake in your blood and now we have to get rid of all the bad blood. It was random, like an accident.” For a while that answer wasn’t good enough for him. He wanted to know what caused the accident, which there is no good answer for.
And then of course our other kids had their concerns. When our 7-year-old Payton had a pain, he asked, “Do you think I have cancer?” He heard at school about cancer being hereditary. And the other kids at Calvin’s school had their own questions as well; they wondered if cancer was contagious and why he was losing his hair.
This is where POGO came in. We are lucky here in Ontario because every family is assigned a specialized community cancer nurse when their child is diagnosed with cancer. Tina, our POGO nurse, came to our home to help our family adjust. She visited our kids’ school to address the concerns of the other children and talked to them in age-appropriate terms so they could understand what was happening to Calvin and what the effects of his treatment would be.
These past 12 months have been intense. Helping a family member with cancer is hard; managing cancer for your child breaks you apart. Despite this, we’ve actually been very lucky. I didn’t know how to navigate the healthcare system for my child with leukemia, so our nurse Tina became an important part of our team of support. And while most families have at least one parent who must give up their job, Michael and I have been able to work because our employers have provided us with the flexibility we need to manage Calvin’s treatment.
I work at LifeLabs and my colleagues have been unbelievably supportive of me. In fact Lifelabs is the presenting sponsor of POGO’s Pajamas and Pancakes program, a relevant theme given how much time kids with cancer spend in their pjs. Thank you to my colleagues for supporting our family and for supporting the cause. And thank you POGO for everything you do for kids with cancer and their families.
It is surprising, but the world keeps spinning even when your child is going through something like this, and our family really appreciates all of the help and encouragement.
In November 2017, LifeLabs employees had a Pajama Party and invited Joby MacKenzie to talk about her son Calvin’s cancer diagnosis, treatment and support from POGO. Meet them both in this inspiring video Calvin Visits the Lab.