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My name is Lia Goh. I am 12 years old and I am a cancer survivor.

When I was three years old, I was diagnosed with acute lymphoblastic leukemia. I went through three years of treatments, including chemotherapy. I lost all of my hair; it almost grew back blonde!! And I received more blood transfusions than I can remember.

In fact, I don’t remember a lot about my cancer or its treatment.

Like how my parents had to take leave from work and my family rented an apartment in Toronto because I spent most of that first year in the hospital. Or how I was in isolation for a lot of that year. Or how I spent so much time in bed that my muscles atrophied, and my dad had to carry me everywhere.

I am old enough now to realize how lucky I am. I am lucky to have the support and love of family and friends. I am lucky that my parents had the freedom and the financial means to take the time off work to be with me. Many families don’t have that luxury. I am lucky to have benefitted, and I will continue to benefit, from the support of some incredible organizations, such as POGO.

And my dad always says that I am especially lucky to have benefitted from so many kids that came before me. From the research that has been done, and so many incredible services that have been created to support kids with cancer, their families and survivors like me.

From the time my brother and I were little, my dad would read a poem to us called “The Champions Creed.” In it, there is a line that has always stuck with me:, “Dedicate yourself to a mighty purpose.”

I can’t think of anything more mighty than helping to beat childhood cancer. So, I feel responsible to do as much as I can for all the kids who are fighting this battle now and all who will be fighting it in the future.

Watch Lia deliver her full speech here.

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Yasmin Nasrati

#BellLetsTalk #mentalhealthawareness

I am 23 years old, a college graduate and a current student in York University’s Sociology and Human Rights programs. My education is very important to me but it can be overwhelming sometimes. The workload combined with rising debt is stressful, while splitting my spare time between volunteering and family and friends has become difficult to balance.

I’m also a four-time cancer survivor. I had my first diagnosis, a brain tumour, at age 13. I’ve also had colon, colorectal and, most recently, breast cancer. At age 12, my brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Because screening was never done and we weren’t aware of our genetic disorder, my brother passed away from colon cancer. I have an inherited gene mutation, which increases my lifelong risk of acquiring malignancies and an ongoing anticipation of serious health concerns.

My life is filled with medical appointments, medical treatments, school work and other everyday commitments, and so I have always tried to be strong and brave, pushing my feelings down so I could just keep moving forward. But there is a price: fatigue, change in appetite, poor concentration, feelings of restlessness, loss of interest or pleasure in activities, irritability/lack of patience, dry mouth and shortness of breath/tightness of the chest, to name a few. These are all prominent when there are multiple things happening at the same time in my life.

Until recently, I just interpreted these events as “stressful,” but what I didn’t realize until I learned more about the symptoms of depression and anxiety, is that what I was feeling was not just stress, but a blend of mental health issues.

These symptoms don’t just affect me, they take a toll on the people around me. And while I know this is the time when I need to acknowledge what I am going through and ask for help, I often feel that I don’t have any options or that others won’t understand.

I realize that I play the biggest role in my own self-care. Yes, I am going through many issues, medically and psychologically, but what I’ve experienced so far has only made me stronger. So how can I use that strength to achieve a better quality of life? How can I minimize the stress in my life and increase the things that bring me joy, like volunteering? How do I find the time to connect with other survivors who understand what I am going through, when I feel exhausted from the medical appointments and school work? And how do I maintain a hopeful outlook when I know that I may continue to battle various cancers for the rest of my life?

To be honest, I haven’t exactly figured it out. But I do know that it is a process that I need to consciously work on each day, and that my psychological well-being is worth fighting for.

POGO’s Childhood Cancer Care Plan has as one of five goals integrated psychosocial care at all stages of the cancer journey. A key objective is to ensure integration of psychosocial care into standardized care planning to improve quality of life for patients, families and survivors like Yasmin. Learn more.

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Yasmin Nasrati

#BellLetsTalk #mentalhealthawareness

I am 23 years old, a college graduate and a current student in York University’s Sociology and Human Rights programs. My education is very important to me but it can be overwhelming sometimes. The workload combined with rising debt is stressful, while splitting my spare time between volunteering and family and friends has become difficult to balance.

I’m also a four-time cancer survivor. I had my first diagnosis, a brain tumour, at age 13. I’ve also had colon, colorectal and, most recently, breast cancer. At age 12, my brother was diagnosed with colon cancer and later with metastatic adenocarcinoma of the duodenum. Because screening was never done and we weren’t aware of our genetic disorder, my brother passed away from colon cancer. I have an inherited gene mutation, which increases my lifelong risk of acquiring malignancies and an ongoing anticipation of serious health concerns.

My life is filled with medical appointments, medical treatments, school work and other everyday commitments, and so I have always tried to be strong and brave, pushing my feelings down so I could just keep moving forward. But there is a price: fatigue, change in appetite, poor concentration, feelings of restlessness, loss of interest or pleasure in activities, irritability/lack of patience, dry mouth and shortness of breath/tightness of the chest, to name a few. These are all prominent when there are multiple things happening at the same time in my life.

Until recently, I just interpreted these events as “stressful,” but what I didn’t realize until I learned more about the symptoms of depression and anxiety, is that what I was feeling was not just stress, but a blend of mental health issues.

These symptoms don’t just affect me, they take a toll on the people around me. And while I know this is the time when I need to acknowledge what I am going through and ask for help, I often feel that I don’t have any options or that others won’t understand.

I realize that I play the biggest role in my own self-care. Yes, I am going through many issues, medically and psychologically, but what I’ve experienced so far has only made me stronger. So how can I use that strength to achieve a better quality of life? How can I minimize the stress in my life and increase the things that bring me joy, like volunteering? How do I find the time to connect with other survivors who understand what I am going through, when I feel exhausted from the medical appointments and school work? And how do I maintain a hopeful outlook when I know that I may continue to battle various cancers for the rest of my life?

To be honest, I haven’t exactly figured it out. But I do know that it is a process that I need to consciously work on each day, and that my psychological well-being is worth fighting for.

POGO’s Childhood Cancer Care Plan has as one of five goals integrated psychosocial care at all stages of the cancer journey. A key objective is to ensure integration of psychosocial care into standardized care planning to improve quality of life for patients, families and survivors like Yasmin. Learn more.

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Eleven nurses make up the POGO Interlink Community Cancer Nursing Program and, together, they are on the front lines providing school support and care for children with cancer and their families. They meet families at diagnosis, and are with them through treatment, and, should it happen, through recurrence and palliation as well. Here’s how these nurses are making a difference by  connecting them to much-needed community services.

Q. How are patients and their families referred to a POGO Interlink Nurse?

Families are referred to a POGO Interlink Nurse primarily when their child is diagnosed with cancer at the main treating hospital, through members of the healthcare team—ward or clinic nurses, pediatric oncologist or social workers. To raise awareness of our presence across the hospital, POGO Interlink Nurses make presentations to our colleagues to explain the role we play in caring for the child and their family. Families may also be referred to POGO Interlink through their POGO Satellite Clinic or by a physician when the child is returning to school after treatment. Because of the long-standing reputation of the program, families even hear about POGO Interlink Nurses through community agencies, like their Local Health Integration Network, or through their social circles by other parents of a child with cancer.   

Q. What questions do parents typically ask when their child has cancer?

Whether in our hospital or home visits, many of the questions parents ask when their child has cancer are related to chemotherapy, finances and school. On the practical side, we review the educational information they received at discharge, like medications and treatment protocols. But, on the emotional side, parents have many questions about why their child got cancer. “Was it something I did?” “Was it exposure to cleaning chemicals?” “Was their cancer inherited?” Parents are also seeking answers to help them plan long term. “How long will treatment last?” “How soon will my child go into remission after a bone marrow transplant?” “How many medical appointments should I plan for?” Answers to these questions help with family decisions about when and which parent can return to work.  

Q. How do POGO Interlink Nurses work in the community to support children with cancer and families?

Each family has unique needs but when a family receives the news of a new diagnosis, it is overwhelming. How they will manage financially is usually top of mind. POGO Interlink Nurses identify and help prioritize access to available resources and services. Financial assistance is usually the initial topic of discussion followed in time by other supports and services.

We work with agencies like the Local Health Integration Networks to acquire equipment and services to set children up at home when their care is complex. We also work with coaches and instructors in such extracurricular activities as Brownies and hockey. In one instance, a family asked us to speak with a group of neighbours to give the other parents and their children a better understanding of what they were going through.

And of course, we consider the grandparents who are not only concerned for their grandchild but also for their child, and who themselves may have their own health concerns.  

Q. How do POGO Interlink Nurses work with the school system to support the education of a child with cancer?

POGO Interlink Nurses are in the unique position to work with the schools to support children with cancer, their siblings and parents, teachers, principals and classmates. We often advocate for families when there is a delay in the start of home instruction. POGO Interlink Nurses can visit the school and provide a classroom presentation, either in the child’s class or their sibling’s. The information we share is determined in collaboration with the parents and the child and our goal is to provide accurate and age-appropriate information, to answer questions and to involve students in supporting their classmate.

Providing customized school support can be complicated but provides an additional layer of support for the child/family and relieves anxiety about academic expectations, return to school and peer relationships.

We have to consider how much personal health information can be shared. If the school is making the request for a presentation, we have to ensure the family is on board. And, in all instances, once the child with cancer is at an age to weigh in (usually Grade 3), the child must also consent. The more difficult school visits are when we are not able to be transparent about a child’s diagnosis or a recurrence of disease. In one situation, a family wanted us to talk to the class about the importance of hand washing for their “sick” child. They did not want to disclose their child’s cancer diagnosis. In such a situation, our role is to help educate the family about the importance of transparency in avoiding misguided assumptions. And even though a family might have been completely transparent at diagnosis, the recurrence of cancer and the fear of a poorer outcome this time around may make them more guarded during a subsequent classroom presentation.

We also have to be sensitive to the demographics of the classroom—if a student has had a family member with cancer, what will a classroom presentation about cancer trigger for them?

Q. How does the work of the POGO Interlink Nurse help others on the child’s healthcare team?

We work very closely with the healthcare team, sharing information from home and community to keep them informed about what is going on. Because POGO Interlink Nurses make home visits, we are privy to specific family dynamics. We are able to let others on the child’s healthcare team know if the parents are also caring for other sick family members, like a grandparent or sibling, or if there are other undisclosed situations. These kinds of disclosures may have an impact on the family’s ability to get to appointments and are important considerations in providing and receiving care.

POGO Interlink Nurses have the unique privilege to work in schools to support children with cancer, their siblings, teachers and the administrative team, and to be with the family for the entire trajectory of care. By being a link to community and hospital, POGO Interlink Nurses are vital in connecting many dots for all members of the child’s healthcare team in ways that help provide the right care in the right place for the best possible outcomes.

POGO Interlink Nurses work out of Children’s Hospital of Eastern Ontario (Ottawa); The Hospital for Sick Children (Toronto); Children’s Hospital (London); McMaster Children’s Hospital (Hamilton); and Northeast Cancer Centre, Health Sciences North (Sudbury). They serve their immediate and surrounding areas, including Barrie, Simcoe, Muskoka, Peterborough, the Greater Toronto Area and northern Ontario.

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You’re young and recently wed. You’ve started a family and are trying to make ends meet financially. You used to think eating lunches out was a big expense.  Now there are diapers, special food, daycare, sports and other activities, and the need for more space! Hiring a sitter so you can go to dinner and a movie costs more than the dinner and movie! Your spending priorities have shifted but for the most part you’re managing.

Then your eldest child starts to bruise easily, gets fevers often and doesn’t want to eat. Over a relatively short period of time you are told your child has cancer. Leukemia. You’re assured that survival is good and your child has a good chance to beat this. But the treatment hospital is over an hour’s drive away. You have to plan for many nights in the hospital; and your first stay will be weeks long. Either you or your partner has to stay with your ill child while the other is at home with your youngest. Travel-related expenses, including meals and accommodations, increased daycare costs and the realization that one of you won’t be able to go back to work for what will likely be a long time. Ugh. Of course you don’t think much about finances at the start. You are focused on keeping everything together and making sure your ill child will survive. But slowly the costs become apparent. The credit card bills roll in. So much for managing.

The POGO Financial Assistance Program helps families with out-of-pocket costs when their child is in cancer treatment.

This is a common storyline among families of a child with cancer. Although most of the treatment is paid for by the government or private insurance, there are large costs associated with a child’s cancer care, the largest most often being a loss of nearly half the family income due to one parent leaving the workforce. This is a well-known issue among researchers. They know the financial costs in the early part of the diagnosis and treatment are huge. But what researchers haven’t figured out is how families do in the long term. What is the financial health of the family three, five or 10 years after the diagnosis? Does this kind of health crisis turn into a chronic financial condition for the family? Does the family ever recover financially?

New research by POGO is linking data from its cancer registry (POGONIS) to copies of Canadian tax returns stored at Statistics Canada. Families who experience a diagnosis of childhood cancer are being compared to families who do not experience cancer and are similar in age to the parents, in number and age of the children, where they live and income at the time of diagnosis. The researchers can then follow both family types over time and compare what likely ‘could’ have happened to the cancer family financially to what did happen.

This research is ongoing—the comparison families are now being identified—but so far we can see that a child’s cancer diagnosis stalls household income growth for about a year after the diagnosis, after which household income continues to climb. Of more interest is that families whose child dies after the diagnosis start their family life with lower household income compared to families with children that survive, after which the household income follows the same pattern of income growth. More on this story is yet to come, as this research will also examine the financial impact of the difference in cancer type. Stay tuned!

Dr. Jason Pole is the Principal Investigator on the study Long-term Economic Consequences of a Childhood Cancer Diagnosis. He is Senior Scientist with the Pediatric Oncology Group of Ontario; an Associate Professor in the Dalla Lana School of Public Health, University of Toronto; Adjunct Scientist with The Hospital for Sick Children Research Institute; and Adjunct Senior Scientist at ICES, Toronto. Dr. Pole has a background in epidemiology and health services research with an emphasis in the use of administrative data and complex survey instruments.

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Emma Neagu

B.C. (Before Cancer), I was a competitive gymnast. I had also started dancing and had even participated in one dance
competition before everything changed.

While I was enjoying my new dance classes very much, I noticed severe pain, on and off, in my right knee. I didn’t understand why it hurt so much because I hadn’t fallen. I didn’t worry about it because as a gymnast, and a very active kid, I was used to getting aches and pains.

But then one day, I fell at home doing a very simple move I had been doing for years. I hit my knee against the floor and I was
in unbearable pain. An x-ray told us that nothing was broken. I was told to apply ice, take some Advil and avoid dance until the
swelling went down.

Three weeks later, my pediatrician viewed the results and thought they looked suspicious; perhaps a solid blood clot. He sent me to repeat the x-ray and referred me to The Hospital for Sick Children

On March 14, 2016, we went to the 8th floor of the hospital, followed a long hallway and were in shock when we saw the words “Cancer Clinic.” That was the first moment it sunk in that something might actually be very wrong. The doctors told us they were 99% sure I had a tumour in my femur and sent me for an MRI and surgical biopsy. I was terrified; I had never had surgery before.

The tests confirmed that I had osteosarcoma, the same type of bone cancer as Terry Fox, and that it was not only in my femur, but it had also spread to my lungs.

We had a long meeting with the surgeon who outlined two options for my leg:

  1. Endoprosthesis would mean that the tumour would be removed, a metal rod
    inserted to replace my knee and femur and my leg would be saved. That option
    came with high risk of other complications, additional surgeries later in life and very
    limited mobility. In other words, no dancing.
  2. A surgery called rotationplasty, where doctors remove the leg from the unhealthy knee up to the thigh. They take the healthy lower portion of the leg and rotate it 180 degrees and reattach it to the upper thigh so the ankle faces upward. Essentially, my rotated ankle would function as my knee and I would require a prosthetic leg, but I would have greater mobility than with the other surgical option.

At the age of 12, I was given two months to decide which life-altering surgery I would have. My mom and I had many disagreements. She wanted me to save my leg, while I wanted to do the surgery that would allow me to continue to do gymnastics and dance rather than just watch from the sidelines.

On June 23, 2016, I had rotationplasty and within a few months of the amputation, I was trying on my new prosthetic leg. It wasn’t easy learning to walk again, but the motivation to do something I love helped speed up the process.

The time spent in and out of the hospital was an intense time for my family. In addition to the fear that comes with a cancer diagnosis, I had a hard time coping with being a little kid in such adult circumstances. My parents had to deal with new financial burdens. And my little sister, Lizzy, felt abandoned and thought we didn’t love her anymore.

Get answers to questions kids frequently ask about cancer

During this time, POGO was there to help us in many ways. Our POGO Interlink Nurse came to our home and talked to Lizzy to help her understand that these hard times would end and everything would be okay. She went to my school and talked to my classmates to give them guidance on how to support me without overwhelming me during this very difficult time. And when my mom gave up her job to be by my side, the POGO Financial Assistance Program helped us out.

On December 30, 2016, I completed treatment for a battle I never imagined I’d fight. The following September, I started high school and signed up for several dance classes, including ballet, jazz and even tap! I have been regaining my strength to get back on stage. 

I’m so grateful to POGO donors and I hope that you feel proud to support kids like me. 

– Adapted from Emma Neagu’s speech at the 2017 POGO PJ Party

In December 2017, at Emma’s regularly scheduled scans, they found that the cancer had returned in both her lungs. She had two surgeries to remove the metastasis. Emma is an active advocate in support of research for kids who fight cancer.

Related resources

Read POGO’s Childhood Cancer Care Plan for a roadmap to support childhood cancer investigation and research. 

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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,” 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 Chair of the POGO Nursing Committee and a 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.”

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On November 1, 2018 POGO hosted a one-day nursing seminar the day before the 2018 Multi-Disciplinary Symposium on Childhood Cancer. Topics covered included: Practical strategies to improve Patient/Family Education; CAR-T and other Immunotherapies; Survivorship in the Age of Precision Medicine; and Strategies to Maintain Optimism and Build Resilience for Pediatric Oncology Nurses. 

Over 90 nurses and other health care professionals from across Ontario and beyond attended the conference.

VIEW THE PROGRAM PLENARY SESSIONS

Closing the Gap, Bridging the Divide: How to Effectively Teach Patients and Families
Stephanie Cox, RN(EC), MN, NP-Pediatrics
Angela Filice, RN

Avoiding Information Overload: What do Families Actually Need to Know?
Jen Sullivan, MSN, RN, CPON

Managing Stress and Cultivating Optimism: Enhancing Resiliency in Pediatric Oncology Nurses
Teresa Conte, PhD, CPNP

QUICK-HIT SESSIONS

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

CAR-T Cell Therapy: Patient Eligibility, Management, and Nursing Considerations
Colleen Callahan, RN, MSN, CRNP

Stopping Cancer Cell Evasion with Immune Therapies
Sue Zupanec, MN, NP Pediatrics

New Therapies, New Late Effects – Survivorship in the Age of Precision Medicine
Eleanor Hendershot, RN(EC), MN, BScN, NP Pediatrics

BRAF Inhibition and Fusion in Low Grade Glioma
Tara McKeown, MN NP Pediatrics

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VIEW THE PRESENTATION

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.

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VIEW THE PRESENTATION

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. 

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