The 2018 POGO Multi-Disciplinary Symposium on Childhood Cancer – Precision Medicine in Pediatric Oncology – examined clinical and scientific advances in precision medicine and explored how those advances are impacting the diagnosis and treatment of cancer in children.
Over 250 delegates representing a variety of disciplines attended the conference.
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.
The 2017 POGO Multi-Disciplinary Symposium on Childhood Cancer – Cancer in Infancy: Tiny Patients, Huge Challenges – examined clinical and scientific advances in cancer in infancy and the associated physical, psychosocial and medical issues, as well as focus on relevant resources, tools and strategies for a multidisciplinary audience.
Over 230 delegates representing a variety of disciplines attended the conference.
Click on the session titles below to view presentations that POGO has permission to share.
NOTE: The content of each presentation below captures the unedited information and opinions presented by the speakers. Please note that the information contained in the presentations was current at the time it was presented – there may be further information in subsequent literature. Listed speaker credentials were current at the time of presentation.
Presentation Description: While survival rates for childhood cancer have improved considerably, the diagnosis of cancer in a child remains dreadful for caregivers. Psychosocial reactions are especially intense during the first few months of treatment. Caregivers experience negative moods, depression and symptoms of post-traumatic stress disorder. They are distressed. These normal reactions potentially limit caregivers’ ability to advocate for their child and family. This presentation provides an overview of the development of an evidence-based intervention called Bright IDEAS designed to teach coping skills we hypothesized would alleviate distress in caregivers. Bright represents optimism and feeling empowered, and IDEAS represents: Identify the stressor, Define your options, Evaluate your options, Act out your plan, and See if it worked. The presentation traces findings across three randomized clinical trials using Bright IDEAS consistently showing: 1. acceptability to caregivers, 2. Efficacy, 3. teaching coping skills leads to less distress, and 4. no harm. Most significantly, data showing effects after treatment ends are also presented. Current efforts to disseminate within the pediatric oncology community will be discussed in the context of standards of care and training psychosocial professionals, as well as efforts to disseminate to additional cohorts of caregivers (sickle cell, pediatric rehab medicine).
Speaker: Robert B. Noll, PhD
Pediatric Psychologist
Children’s Hospital of Pittsburgh, Pittsburgh, PA
Professor of Pediatrics, Psychiatry, and Psychology
University of Pittsburgh School of Medicine, Pittsburgh, PA
Robert Noll completed a doctorate in clinical psychology and did his clinical specialty training in pediatric psychology at Michigan State University following completion of his undergraduate degree and five years of military service as a naval aviator. Upon completion of his doctorate, he accepted a faculty position at Michigan State University in the Department of Pediatrics and Human Development. Dr. Noll subsequently went to Cincinnati Children’s Hospital Medical Center where he served as the director of psychosocial services in the division of hematology/oncology. From 2004-2011, he served as the medical director for behavioral health, and division director of developmental and behavioral pediatrics at Children’s Hospital of Pittsburgh. He served from 2006-2016 as chair of the Behavioral Science Committee within the Children’s Oncology Group. He has published extensively on psychosocial issues in pediatric oncology, notably documenting psychosocial difficulties for caregivers and subsequently developing evidence-based interventions. He is the author of more than 150 peer-reviewed publications and his pediatric oncology research has received funding from the National Cancer Institute, Alex’s Lemonade Stand, St. Baldrick’s Foundation and the American Cancer Society.
Vanessa Burgess Presentation Description:
Research has shown that infants and toddlers who were treated for cancer will achieve their developmental milestones later than their healthy peers will. According to the NIH (Bornstein et al., 2012), vocabulary, cognitive functions and motor skills progressed slower in children who were treated for cancer before age four. This prospective study showed that children with cancer were below average for both mental and motor development. With increasing survival rates for children with cancer, the developmental implications for our smallest patients are an important concern. Timely rehabilitation to optimize all areas of development is essential. This workshop will provide a clinical overview of the role of the occupational therapist on a multidisciplinary oncology team, the patient issues resulting from surgeries and treatment protocols, the difficulties to promoting typical development, and the referral process along with its challenges. Case studies of infants with brain tumours, acute lymphoblastic leukemia and neuroblastoma will highlight their clinical rehabilitation to maximize their development throughout their cancer journey.
Speakers: Melissa A. Alderfer, PhD
Senior Research Scientist, The Center for Healthcare Delivery Sciences
Nemours Children’s Health System/Alfred I. duPont Hospital for Children, Wilmington, DE
Associate Professor of Pediatrics
Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA
Dr. Alderfer completed a doctorate degree in clinical psychology at the University of Utah and a post doctoral fellowship in pediatric psychology in the Division of Oncology at The Children’s Hospital ofPhiladelphia (CHOP). After fellowship, she stayed on in the Division of Oncology at CHOP and joined the standing faculty in the Department Pediatrics at Perelman School of Medicine at the University of Pennsylvania. She rose to the level of associate professor before transitioning in 2013 to her current position as a senior research scientist in the Center for Healthcare Delivery Sciences within Nemours Children’s Health System. Under the broad umbrella of healthcare delivery science, her program of research focuses on how childhood chronic illness impacts families, how families adapt and learn to manage illness and the healthcare system, and how we can intervene to improve the experience. Her research has been funded by the National Institutes of Health, American Cancer Society, and various other cancer foundations. She currently has 92 peer‐reviewed manuscripts and chapters.
Vanessa Burgess, MSc OT, OT Reg. (Ont.)
Occupational Therapist, Pediatric Oncology
McMaster Children’s Hospital, Hamilton Health Sciences, Hamilton, ON
Preceptor/Lecturer, Occupational Therapy Program
McMaster University, Hamilton, ON
Vanessa Burgess completed a Master of Science in Occupational Therapy at the University of Toronto following the completion of her undergraduate degree. She practiced at ErinoakKids Children’s Treatment Centre, conducting community rehabilitation with pediatric clients with developmental disabilities, neurological impairments, multiple disabilities, complex disabilities and sensory processing difficulties. Here she focused on oral motor and feeding skills, activities of daily living, fine motor skills and written productivity, and sensory processing. She continued her community practice experience at a private practice, focusing on oral motor and feeding skills and sensory processing with clients with a wide variety of diagnoses and undiagnosed issues. Vanessa has been practicing in oncology at McMaster Children’s Hospital for the past eight years. She is part of the multi‐disciplinary team on the inpatient ward, outpatient active therapy clinic and neuro‐oncology clinic. Her focus includes oral feeding and dysphagia including videofluoroscopic swallow studies, infant development, activities of daily living, functional mobility and equipment, fine motor skills and school participation. She enjoys working directly with patients and their families to empower them to overcome barriers in their everyday lives throughout their cancer journey.
