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It’s a Privilege to Care for a Child with Cancer

Posted on May 7, 2021 by admin

Denise Mills, MN, NP Pediatrics

My introduction to POGO started 20+ years ago when I attended my first POGO Symposium. Back then, I craved learning more about pediatric oncology, and there were many POGO educational opportunities from which I could choose.

So, one day (and I am not sure of the exact details of how this happened), I found myself in a car with Dr. Mark Greenberg, a founding member of POGO, Corin Greenberg, POGO’s Executive Director at the time, and another staff nurse. We were on our way to the CBC to participate in an interview about childhood cancer awareness. They wanted a novice nurse’s side of the story along with Mark’s expert thoughts.

I was so nervous. Then came THE question.

“How can you work in pediatric oncology when it is such hard work?”

All of us who work in pediatric oncology either dread or welcome this question. It can be a conversation stopper or it can lead to an opportunity to educate the public about this important cause.

“It is a privilege to care for a child with cancer,” I remember saying.

At the time, I actually thought that I understood what it meant to do this work and I probably did to an extent.

I continued along in my nursing career gaining more knowledge and expertise. I felt good about my practice; I understood my purpose.

Fast forward to six years ago, nearly 15 years after that CBC interview. I found myself caring for my mom in a hospice. I spent hours there watching the healthcare providers at work, wondering, how do they do this?

One day, I was talking with a nurse.

“What kind of nursing do you do?” she asked.

“Pediatric oncology nursing,” I said.

She then shared with me that 15 years before, her daughter had neuroblastoma and had died. We talked for a little bit and on her next night shift, she brought in a photo album, sat with me, and shared stories about her daughter. After, she thanked me for listening and for asking her questions about her daughter. Most people were too uncomfortable to talk with her about her daughter or acknowledge that she had a deceased child. She said that it was always the staff at McMaster Children’s Hospital and SickKids, where her daughter was treated, who understood what she was going through the most and were the easiest to talk to.

That interaction helped me fully understand how the care we provide has an impact on families. And so, to do the best in my work I believe I need the best ongoing education.

The annual POGO symposium is a high-quality conference and—along with POGO’s one-day education events—has played a significant role in my professional education. POGO’s reputation for excellence in education attracts a broad spectrum of healthcare providers to present and learn about topics related to survivor care, standards of care at POGO Satellite Clinics and research.

And through my work with POGO I can be a champion of childhood cancer care with the general public and educate healthcare providers across the province.

To this day, I still say that it is a privilege to care for a child with cancer and their family. After all, where else can you go to work and get hugs and high fives (from the kids) all day long?

Denise Mills, MN, NP Pediatrics, works at The Hospital for Sick Children in the  Solid Tumour, New Agents and Innovative Therapy, MIBG Program. She is co-chair of the POGO Nursing Committee and a past member of the POGO Board of Directors. She was a member of the planning committee for the 2018 POGO Multi-Disciplinary Symposium on Childhood Cancer and the Pre-Symposium Nursing Seminar.  Denise is also a recipient of a POGO Seed Grant to fund her study “Improving Quality and Consistency in Family Education Prior to First Discharge Following a Pediatric Cancer Diagnosis.”

Posted in Misc | Tagged Denise Mills, education, neuroblastoma, nursing

Closing the Gap, Bridging the Divide: How to Effectively Teach Patients and Families

Posted on November 22, 2018 by Jamie Irvine


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Presentation Description:
A diagnosis of cancer is emotionally distressing news to process for a newly diagnosed pediatric oncology patient and their family. There is an enormous amount of information that these families require to learn about their child’s diagnosis, side effects and treatment.  According to APHON’s Scope and Standards of Practice, educating patients and families about the child’s treatment, side effects, symptom management, care at home, and the family’s readiness and preferred method of learning are essential elements of the pediatric hematology/oncology nurse (2009). Pediatric oncology nurses often do not have formal training on how to educate families. Since nurses provide a large portion of education, it is imperative to have the knowledge and skills required to facilitate this transfer of knowledge. The understanding of health literacy and clear communication are foundational principles for patient and family education.

The presentation will provide educational tools focused on improving the nurse’s content and delivery of information and ability to facilitate client-centered learning, when teaching newly diagnosed pediatric oncology patients and families.

Speakers:
Stephanie Cox
, RN(EC), MN, NP Pediatrics
Nurse Practitioner

Stephanie Cox has been practicing at McMaster Children’s Hospital as a nurse practitioner in pediatric hematology/oncology since 2004. She received her Master’s of Nursing and Acute Care Nurse Practitioner-Pediatrics degree from the University of Toronto in 2004 and her Bachelor Science in Nursing from the University of British Columbia in 2000. Her clinical and research interests include the care of adolescents and young adults with cancer and the supportive care aspects of pediatric oncology therapy. Stephanie currently is the Disease Committee Nurse for the Myeloid Committee at the Children’s Oncology Group. In addition, her most recent focus has been developing and implementing improved educational strategies for pediatric oncology patients and their families.

Angela Filice, RN, BA, BScn, CPHON
Quality and Safety Nurse

Angela Filice earned her bachelor of arts in psychology at the University of Western Ontario in 2000 and went on to complete her bachelor of science in nursing at McMaster University. She has worked in the inpatient pediatric hematology/oncology unit for the past twelve years.

In 2016, she was awarded an Advanced Clinical Practice Fellowship with the Registered Nurses’ Association of Ontario entitled “educational strategies to improve content and delivery of education by pediatric oncology nurses to families of pediatric patients that are newly diagnosed with cancer.” She has delivered several nursing workshops on improving delivery of patient education.

Angela has been in the Quality and Safety nurse position for the past year where she works on quality improvement projects and safety initiatives.

Posted in 2018 Pre-Symposium Nursing Seminar | Tagged 2018 pre-symposium, nursing, stress

Avoiding Information Overload: What do Families Actually Need to Know?

Posted on November 22, 2018 by Jamie Irvine


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Presentation Description:
Patients and families are overwhelmed after a child receives a cancer diagnosis. Current literature supports limiting educational content at the time of diagnosis to essential topics necessary for families to know in order to safely care for their child at home. The approach to new diagnosis education should be family-centered, and tailored to the child’s diagnosis, treatment plan, and age or developmental level. In addition, education should be multidisciplinary, involving nursing, providers, and the psychosocial team to ensure that all facets of the child’s care are addressed, including child and family coping.

This presentation provides an overview of current evidence supporting the education of newly diagnosed pediatric oncology patients and families, as well as the application of expert recommendations into practice.

Speaker:
Jen Sullivan
, MSN, RN, CPON
Oncology Patient/Family Education Specialist, Cancer Centre
The Children’s Hospital of Philadelphia

Jeneane received her Bachelor of Science in Nursing from Georgetown University, and has masters degrees as a pediatric nurse practitioner and in nursing education from Villanova University.

Jeneane Sullivan worked as an inpatient oncology/BMT nurse at Children’s Hospital of Philadelphia (CHOP) for 6 years before taking on her current role as Oncology Patient and Family Education Specialist at CHOP. In this role, Jeneane has built an education program for pediatric oncology patients and their families, developing resources and education from new diagnosis through survivorship.

Beyond oncology, she is co-leading the enterprise-wide Digital Health Education Initiative at CHOP. In addition, Jeneane serves as the nursing member-at-large for the Children’s Oncology Group (COG). Jeneane has co-authored publications on oncology patient/family education, and is the co-editor of the COG Family Handbook: New Diagnosis Guide. She has presented on patient/family education and CHOP’s unique program regionally, nationally and internationally. 

 

Posted in 2018 Pre-Symposium Nursing Seminar | Tagged 2018 pre-symposium, nursing

Management of Fatigue in Children and Adolescents with Cancer and Pediatric Recipients of Hematopoietic Stem Cell Transplants: A Clinical Practice Guideline

Posted on November 22, 2018 by Jamie Irvine


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Presentation Description:
This session will describe a clinical practice guideline for fatigue management in children receiving cancer treatments, developed by POGO.

Speaker:
Lillian Sung, MD, PhD
Staff Physician, Department of Haematology/Oncology
The Hospital for Sick Children

Dr. Lillian Sung is a Full Professor and Senior Scientist at The Hospital for Sick Children in Toronto. She is certified in the specialties of pediatrics, infectious diseases, hematology and clinical investigation. She completed a PhD in Clinical Epidemiology from the University of Toronto in 2004. She has a clinical research program focused on supportive care for children with cancer. Her methodological focus is on randomized and observational trials, meta-analysis, and patient-reported outcomes.

Dr. Sung is the principal investigator on multiple operating grants from the National Institutes of Health (NIH), Canadian Cancer Society Research Institute and the Canadian Institutes of Health Research. She is the co-PI on the NCI Community Oncology Research Program (NCORP) Research Base grant which supports the Cancer Control and Supportive Care program within the Children’s Oncology Group. She is also the co-PI on an NIH R25 grant to support the Clinical Research Training Institute, sponsored by the American Society of Hematology.

Posted in 2018 Pre-Symposium Nursing Seminar | Tagged 2018 pre-symposium, fatigue, nursing

CAR-T Cell Therapy: Patient Eligibility, Management, and Nursing Considerations

Posted on November 22, 2018 by Jamie Irvine


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Presentation Description:
Pediatric acute lymphoblastic leukemia (ALL) is the most common childhood cancer. There have been significant improvements in pediatric ALL survival rates over the past 50-60 years. Unfortunately, approximately 15% of patients relapse and cure rates are much lower after relapse. Many of these patients require newer, more novel therapies and targeted immunotherapy using anti-CD19 chimeric antigen receptor T cells (CAR T) is one of those therapies. A patient’s own T cells are collected and then genetically engineered to recognize and attack CD19 + tumors. Benefits of CAR T cell therapy include expansion of the CAR T cells in the patient and potential for long-term persistence for disease surveillance. This therapy has shown encouraging results in patients with refractory and relapsed ALL. With therapies like this becoming more widely available, pediatric oncology nurses will need to understand the concept of these therapies and know the risks and side effects in order to provide care to these patients. Nurses play an important role in providing safe care and patient management. They are often the first clinicians to recognize side effects and problems. There is also a significant role for nurses in providing anticipatory guidance and education for patients and their families.

Speaker:
Colleen Callahan
, RN, MSN, CRNP
Nurse Practitioner, Division of Oncology
Children’s Hospital of Philadelphia

Colleen Callahan, MSN, CRNP, has worked in pediatric oncology for 23 years, 18 of which as a nurse practitioner in the Oncology Division at Children’s Hospital of Philadelphia. She has worked in the Cancer Immunotherapy Program for the past five years caring for patients pre, during, and post CAR T-cell therapy in the outpatient setting. She follows these patients from their initial referral to the cancer immunotherapy team, through their T cell collection, T cell infusion, and then after infusion monitoring for side effects, adverse events, and long-term effects and responses.

Posted in 2018 Pre-Symposium Nursing Seminar | Tagged 2018 pre-symposium, CAR-T, nursing

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