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Is Overprotective Parenting Linked to Anxiety and Depression?
#BellLetsTalk #mentalhealthawareness
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.
Amanda Sherman, BA, MA, PhD(c)
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.
Culturally Competent Healthcare Focus of New Pediatric Oncology Course
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 Indigenous children, as Indigenous families often face barriers to culturally appropriate healthcare.
POGO’s focus has been on building relationships, identifying current opportunities to improve the care of Indigenous 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 Indigenous Relationship and Cultural Awareness courses offered by Cancer Care Ontario. These courses provide frontline healthcare professionals with knowledge about the history and culture of First Nations, Inuit and Métis people and communities and guidance on how to provide culturally appropriate, 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 Indigenous 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 Indigenous Relationship and Cultural Awareness courses are ideal for healthcare providers, those working with Indigenous people, and anyone who wants to better understand Indigenous 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.
Indigenous Relationship and Cultural Awareness Courses
Watch the video featured in Pediatric Oncology
When your 5-year-old asks, “What did I do wrong?” by Joby McKenzie
Calvin and Joby in their Lifelabs pajamas
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.
An Economic Evaluation of a Promising New Treatment for High-Risk Leukemia
POGO-FUNDED RESEARCH: An Economic Evaluation of CAR-T Therapy
Acute lymphoblastic leukemia (ALL) is the most common form of childhood cancer and for most patients, the standard chemotherapy protocol works very well with an overall cure rate of 90%. But, there is a subset of this population that is treatment resistant. For these young patients, a relatively new therapy called chimeric antigen receptor T-cells (CAR-T) therapy may be the answer.
CAR-T therapy uses the patient’s own immune system to do the work of destroying the ALL cancer cells. It starts with harvesting immune cells called T-cells from a patient’s blood. Millions of copies of these cells are grown in a lab—engineered to recognize, target and destroy the cancer cells—then infused into the patient’s bloodstream. Once back in the patient’s body, the cells divide and increase in number, creating a massive army against leukemia cells. Importantly, unlike an infusion of a drug, these cells can remain in the body indefinitely, providing constant surveillance against ALL’s return. The results to date are promising, but not without significant risk.
“Like most cancer therapies, CAR-T cell treatment can have severe and potentially fatal side effects,” says Dr. Alexandra Zorzi, pediatric oncologist at Children’s Hospital, London Health Sciences Centre. “The ‘activation’ of your own immune system can lead to the release of too many cytokines, which can result in laboured breathing, high fevers, and potentially life-threatening decrease of blood flow to internal organs.”
But when it works, it works miracles. At least that is what we know in the short term. “CAR-T cell therapy has the potential to be a major game changer in childhood ALL,” says Dr. Paul Gibson, medical officer with POGO. The early results have shown remarkable response rates, even in children who have been heavily treated for ALL previously. Not only is the response rate impressive, but so are the sustained remissions many patients are experiencing. “This is the first true gene therapy in childhood cancer therapy,” says Dr. Gibson. “While very expensive upfront, it may not only save lives, but save children from needing to be treated many more times in the future.”
Currently, this therapy is only offered at the Children’s Hospital of Philadelphia. The cost to send an Ontario patient for treatment is close to $500,000, not including the cost to families who often have to leave work and home for several months.
Petros Pechlivanoglou, PhD
In 2016, POGO awarded Dr. Petros Pechlivanoglou with a seed grant for his project “Economic Evaluation of CAR-T Therapy for Children with High Risk Relapsed ALL.” Dr. Pechlivanoglou and his co-investigators—Drs. Sumit Gupta, Jason Pole, Paul Nathan, Tal Schechter-Finkelstein and Wendy Ungar, together with PhD student Jill Furzer—are using statistical and mathematical modelling to determine the value of CAR-T therapy from a clinical and economic perspective. What is the trade-off between the treatment’s effectiveness and its cost to the Canadian healthcare system and society overall? Where should we focus our efforts to collect more evidence in the future? And, how will this information be used to inform policy decisions?
“This economic evaluation of CAR-T therapy is only one example of new therapies,” says Dr. Petros Pechlivanoglou. “As new cancer innovations emerge, both in the pediatric and the adult world, we are going to have this challenge of understanding the ‘value-for-money’ proposition again and again. This grant will help us tease out the methods needed to find timely answers to such questions and make prioritization decisions about future clinical, economic and policy research.”
– Petros Pechlivanoglou, PhD
Dr. Petros Pechlivanoglou is a scientist at The Hospital for Sick Children Research Institute and assistant professor at the University of Toronto. His research focuses on methods around the use of health decision analysis, administrative data and prediction modelling in economic evaluation, and the health economics of pediatric oncology and pre-term birth.
Raising a Child with Cancer as a Single Mom
My daughter Adaejah has always been a happy little girl—active, curious and very lovable. The fact that she was born with Down syndrome did not affect that. The fact that she had cancer did not change that.
The events that led to her diagnosis took place over a few months. Adaejah started at a school for children with disabilities when she was two years old. She developed a cold in September that had not subsided by December. She stopped eating and a cut over her forehead just would not heal. Multiple visits to our local hospital didn’t get us any closer to understanding what was going on, but within 45 minutes into an emergency visit at The Hospital for Sick Children, we found out she had leukemia. Adaejah was admitted immediately.
I was completely disoriented for a few days. The hospital connected me to a social worker to help me understand what was going on. My beautiful baby girl needed to go through several rounds of chemotherapy; she would not be coming home for six months; I could not go back to work because I needed to be at the hospital full-time; and I had to figure out how to manage as a single mother with two other kids at home.
I got a leave of absence from my job and received Employment Insurance (EI) benefits for parents of critically ill children. It wasn’t even the same as my salary when I was working, but I still had to buy food for myself and pay the bills at home. My 17-year old daughter became the caregiver to my seven-year old daughter while I lived at the hospital with Adaejah. When a child gets cancer, it impacts the whole family and how you go about things day to day. It was a huge adjustment for my kids and me.
We thought we were out of the woods when they finally sent us home. But complications of all kinds followed. Adaejah developed septic shock and kidney failure and had to receive dialysis. She relapsed and received a bone marrow transplant from a cord donor. During her second hospital stay, everything we owned was destroyed by a house fire and smoke damage. For several months after we were released from the hospital, we lived in transitional housing because we could not return home while Adaejah’s immune system was so compromised.
While I have family in Toronto, I did not get a lot of support from them during this time. I don’t even know if I can call them family anymore. I am very grateful to the friends who helped me when they could, to the hospital, and to Tina, my POGO Interlink Nurse, who has gone above and beyond. Tina connected me to so many resources, including donations during the holidays, special subsidies that helped pay the rent, and the POGO Financial Assistance Program that helped me with food and childcare. She has worked through my EI applications with me and helped to reintegrate Adaejah back into her special school.
We are not out of the woods yet. Adaejah is being monitored closely because her blood count is low. When she is able to travel, my hope is that we can all make a trip to Jamaica to see where I am from.
Ashmara was married recently and gave birth to her fourth child, Jeremiah. She is looking forward to going back to work and wants to move into a different neighbourhood to provide a better home for her family.