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MY CHILD SURVIVED CANCER, SO WHY AM I DISTRESSED?

Posted on January 29, 2020 by Claire Slaughter

At 10 years old, Tyler was diagnosed with an aggressive cancer called acute myeloid leukemia. His only chance for survival was a stem cell transplant. With no full match on the horizon, his brother Jahni (a partial match) eventually became his donor. Read the full story: How Jahni Saved His Brother’s Life. 


By: Melody D

It was only five months between Tyler’s diagnosis and his last cancer treatment, but every moment during that period was so intense and foreign to anything I’d ever experienced; it actually felt like years.

When we were in the hospital, my friends and family would comment on how admirable it was that I could stay calm and strong through it all. Looking back, I really don’t know how I managed. Two years later, my anxiety is still overwhelming and at times I find it hard to cope with the normal things. For example, if my son comes home tired from school, I panic and look for other symptoms like a temperature. The thought of him going on an overnight school trip will trigger my anxiety and “what ifs”. My mind thinks of worst-case scenarios and I get overwhelmed. The post-traumatic stress is very real.

What it takes to be a “strong mom” changes when your child is a cancer survivor.

Sometimes people ask why I’m stressed—after all, Tyler is in remission and doing exceptionally well. I can’t explain it except to say that when your child is diagnosed with cancer, your body and mind go into survival mode; you have no other choice. I did what I needed to do to get through it one day at a time. I wasn’t able to fully process everything that was happening at the time, so I guess this is what I’m doing now—processing it.

POGO-supported research explores the mental health of mothers and siblings of children with cancer.

Tyler has crossed many milestones which I’m grateful for, but there are days when I dwell on uncertainty. Vivid memories randomly pop up when I do normal things, like run errands or when I’m driving. Some good, some not so good. Sometimes memories make me cry. When I have these days, I can get sad, irritable or worried. It’s a unique thing to go through, to say the least, but talking through it with other cancer moms who can relate is very helpful.

Perhaps I’ll feel better when he hits the third-year remission mark, or fourth, or fifth—I don’t know. For now, if I’m feeling crappy, I won’t suppress it. I acknowledge that I’m still healing and let myself feel my way through my emotions one day at a time.

Posted in Misc | Tagged AML, anxiety, BellLetsTalk, Childhood Cancer Survivor, mental health, Mental Health Awareness, parenting, psychosocial

The Gordian Knot of Precision Medicine: Ethical Dilemmas and Psychosocial Impacts

Posted on September 19, 2019 by Jamie Irvine


Presentation Description:
Targeted drug therapies show promise for treating certain types of pediatric cancers. Yet, they also come with serious ethical and psychosocial implications that can have far-reaching impacts on patients, families and health professionals. Using a case-based approach with examples from Canada, Australia and the United States, this workshop will explore ethical and psychosocial implications of tumour sequencing, somatic and germline testing, and other aspects of precision medicine, and discuss potential strategies to address and mitigate them.

Speakers:
Conrad Fernandez, MD, FRCPC
Professor and Head, Pediatric Hematology/Oncology
IWK Health Centre
Senior Scientist, Beatrice Hunter Cancer Research Institute
Dalhousie University

Dr. Conrad Fernandez is Professor and Head of the Division of Pediatric Hematology Oncology at the IWK Health Centre and Dalhousie University. He is the founding Co-Chair of the Children’s Oncology Group (COG) Return of Research Results Committee and Vice Chair of the COG Bioethics Committee. He is the lead of the Ethics Node of the Terry Fox Research Institute PROFYLE Project. He is a member of the Panel on Research Ethics, which informs the research ethics policy of Canada, called the TriCouncil Policy Statement on Ethical Conduct for Research Involving Humans. He is a Senior Scientist and a Chair of the Research Committee for the Beatrice Hunter Cancer Research Institute at Dalhousie University. He is Chair of the COG Renal Tumors Committee and a member of the COG Voting Body Steering Committee.

Dr. Fernandez’s two research passions are the development of clinical trials for children with renal tumours and exploring the many ethical challenges encountered in considering the return of summary or individual research results to participants.

Steven Joffe, MD, MPH
University of Pennsylvania Perelman School of Medicine
Emanuel and Robert Hart Professor of Medical Ethics and Health Policy

Dr. Steven Joffe is the Emanuel and Robert Hart Professor of Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine. He serves as Chief of the Division of Medical Ethics and directs two post-doctoral fellowships in bioethics and in the ethical, legal and social implications of genomics. He is also Professor of Pediatrics at Children’s Hospital of Philadelphia.

Dr. Joffe attended Harvard College, received his MD from the University of California at San Francisco (UCSF), and received his MPH from UC Berkeley. He trained in pediatrics at UCSF and in hematology/oncology at the Dana-Farber Cancer Institute and Boston Children’s Hospital.

Dr. Joffe’s clinical work is in pediatric stem cell transplantation. His research addresses the ethical challenges that arise in the conduct of clinical and translational investigation. He has been principal investigator of National Institutes of Health, Patient-Centred Outcomes Research Institute (NIH, PCORI) and foundation-funded studies that examine the roles and responsibilities of principal investigators in multi-centre trials, governance in learning healthcare systems, return of genetic results to research participants, and the integration of genomic sequencing technologies into cancer care. He is a member of the U.S. FDA’s Pediatrics Ethics Subcommittee and of the National Human Genome Research Institute’s Genomics and Society Working Group.

Claire Wakefield, BPsych(hons), MPH, PhD
Director Behavioural Sciences Unit
Sydney Children’s Hospital

Professor Claire Wakefield, registered psychologist, is Director of the Behavioural Sciences Unit at Sydney Children’s Hospital, Australia. She is a chief investigator on grants worth >$26M and has published >140 peer-reviewed articles. Professor Wakefield holds a prestigious NHMRC Career Development Fellowship, and a $2.7M program grant, and is Co-Director of the SPHERE Kids to Adults (K2A): Creating Healthy Futures Clinical Academic Group. She chairs the pediatrics committee for the International Psycho-Oncology Society and founded the first international early career group for professionals working in pediatric psycho-oncology. Professor Wakefield’s team has created and implemented evidence-based resources for bereaved families, parents of children with cancer, and adolescents and young adults with cancer, including 10 clinical decision aids, many of which are now endorsed and disseminated by NSW Health. With increased use of genetic testing and personalized medicine in pediatrics, her team is assessing the psychological impact of new genetic technologies on children and families and is exploring the ethical questions arising in this novel area of medicine. Her team leads the patient-reported outcomes study in the PRISM clinical trial, one of the largest personalized medicine trials for childhood cancer patients worldwide.

Posted in 2018 Symposium, Education for Health Professionals | Tagged 2018 symposium, ethics, psychosocial

Beneath the Surface: The Psychosocial Impacts of Precision Medicine

Posted on September 19, 2019 by Jamie Irvine


VIEW THE PRESENTATION

Presentation Description:
Precision medicine represents arguably the most exciting advance in pediatric oncology in recent decades. Despite great hope for this new approach to making individualized treatment recommendations for children with cancer, there will likely be associated psychosocial challenges for all stakeholders involved, including patients, parents, clinicians and scientists. Precision medicine trials are very complex, meaning that patients’/parents’ understanding about their treatment options might be limited. Healthcare professionals might also find it difficult to manage the psychosocial impacts of precision medicine for their patients. This presentation summarises the key potential impacts of precision medicine for children with cancer, their families and the professionals who care for them. Professor Wakefield will present data from recent systematic reviews, a large-scale acceptability study, plus emerging prospective data from the first 100 families enrolled in the Australian PRISM precision medicine trial for children with high-risk cancer.

Speaker:
Claire Wakefield, BPsych(hons), MPH, PhD
Director, Behavioural Sciences Unit
Sydney Children’s Hospital

Professor Claire Wakefield, registered psychologist, is Director of the Behavioural Sciences Unit at Sydney Children’s Hospital, Australia. She is a chief investigator on grants worth >$26M and has published >140 peer-reviewed articles. Professor Wakefield holds a prestigious NHMRC Career Development Fellowship, and a $2.7M program grant, and is Co-Director of the SPHERE Kids to Adults (K2A): Creating Healthy Futures Clinical Academic Group. She chairs the pediatrics committee for the International Psycho-Oncology Society and founded the first international early career group for professionals working in pediatric psycho-oncology. Professor Wakefield’s team has created and implemented evidence-based resources for bereaved families, parents of children with cancer, and adolescents and young adults with cancer, including 10 clinical decision aids, many of which are now endorsed and disseminated by NSW Health. With increased use of genetic testing and personalized medicine in pediatrics, her team is assessing the psychological impact of new genetic technologies on children and families and is exploring the ethical questions arising in this novel area of medicine. Her team leads the patient-reported outcomes study in the PRISM clinical trial, one of the largest personalized medicine trials for childhood cancer patients worldwide.

Posted in 2018 Symposium | Tagged 2018 symposium, psychosocial

2018 POGO Symposium on Childhood Cancer

Posted on November 22, 2018 by Jamie Irvine


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.

VIEW THE PROGRAM

Click on the session titles below to view presentations that POGO has permission to share. 

PLENARY SESSIONS

Precision Medicine in the Pediatric Oncology Clinic: From Feasibility to Clinical Impact
Katherine Janeway, MDMD, MMSc

Precision Medicine – A Paradigm Shift?
Ian F. Tannock, CM, MD, PhD, DSc
Uri Tabori, MD

Thinking Practically: Delivery of Care Considerations for New Agents
Karen Fung, MSW, RSW
Tara McKeown, RN MN NP-Paediatrics

Ethics and Consent in the Age of Precision Medicine – Forging a Path Forward
Steven Joffe, MD, MPH

Select Poster Presentations
Alexandra Zorzi, MD, FRCPC
Andrew Shuen, PhD Candidate, MD, FRCPC
Lauren Mulrooney
, Nursing Student (3rd year)
Valli Subasri, MSc candidate (Medical Biophysics)
Nicole Espinosa, BScH Candidate (Life Sciences)
Mohammad R. Alqudimat, PhD Student (Nursing)
Marta Wilejto, Assistant Professor Paediatric Hematology/Oncology
Sarah Naraine, Fourth Year Nursing Student
Ceilidh Eaton Russell, PhD
Jill Furzer, PhD candidate (health economics)

Targeted and Traditional Agents: Can We Reduce Side Effects Using Pharmacogenomic and Endogenous Biomarkers?
Richard B. Kim, MD, FRCPC

The Future of Immunotherapy, CAR-T and Beyond
Shannon L. Maude, MD, PhD

WORKSHOPS

The Evolution of Clinical Trials in Canada
Rebecca Deyell, MD, MSc, FRCPC
Josh Silvertown, PhD, MBA, MSM
Patrick Sullivan

PROFYLE/KiCS: The ABCs of Precision Medicine in Canada
Alexandra Zorzi, MD
Anita Villani, MD, MSc, FRCPC
Andrea Cote, RN, BScN

CAR-T Cell Therapy in Ontario: Opportunities and Challenges
Joerg Krueger, MD
Stacey Marjerrison, MD, MSc, FRCPC
Colleen Callahan, RN, MSN, CRN

Posted in 2018 Symposium, Education for Health Professionals | Tagged 2018 symposium, CAR-T, Clinical Trials, consent, diagnos, ethics, genetics, pharmacology, precision therapy, psychosocial, side effects

Is Overprotective Parenting Linked to Anxiety and Depression?

Posted on January 30, 2018 by Kelly Zorzi

#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.

Posted in Misc, Research | Tagged anxiety, depression, emotional health, late effects, parenting, psychosocial, stress

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