CBTF Professional Newsletter - Spring 2014
Connecting Patients and Professionals Matters 
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A quarterly resource for our community of healthcare leaders
Spring 2014

Communication With Fathers of Children with Brain Tumors
Stacia Wagner
As medical professionals, the way we communicate with fathers, the information Picture 140we share with them and our societal expectations of their needs may not always be congruent with their actual needs. When a family has a child diagnosed with a brain tumor, these differences may be more obvious or become misunderstood. Unfortunately, the informational and emotional needs of fathers are rarely studied. However, there are many things we know based on gender studies, conversations with father and research. Here are some common challenges associated with fathers with a brain tumor child and things to consider
when interacting with them:

  • Men are often seen as breadwinners and problem solvers. Therefore the language used with them from the medical team may be very fact based and there may be few questions asked about emotion and coping.
    • It is often easier for men to fall into the role of “breadwinner” then to admit that they want to talk about how they are coping with diagnosis, treatment and their fears. So we have to stop and ask questions.
  • When coping with a situation, men use problems-solving, denial and avoidance more often than women. In addition, fathers tend to be less emotionally expressive than mothers.
    • Reading of body language and outward expression is not enough.
    • Do not accept information from just the mother. Mothers often express a feeling like “he has isolated himself”, when in reality he may not know how to express himself or talk about his feelings.
  • Think about when the father is going to be available to talk. You may have to call after hours or stay at the hospital after five. While mothers may talk to other mothers at the hospital or online, a father may not know another father sharing the same experience.
    • Years later, fathers often state that they did not have anyone to talk to after the initial diagnosis. They had many unanswered questions including how to communicate with their child about how they were feeling.
    • Consider linking one father to another father who has shared a similar experience. In the CBTF Family 2 Family program, there are many fathers who are willing to connect to one another.
  • Fathers often have to rely on their own research to answer their questions. Double check that fathers’ really understand the medical situation and ask what they already know.
  • Social workers may be the only team member working with the father. Help the rest of the team understand his needs.                               

Project Renew Restores Hope for Brain Tumor Research
Joshua Rubin, MD

Under the aegis of CBTF, a group of leadproject_renew logo 2ing pediatric neuro-oncologists, developmental neuroscientists, psychologists and cognitive scientists met in St Louis on March 12-14, 2014 to discuss cognitive deficits in children with brain tumors. It was the first time that a group with this broad expertise had met to consider the multiple causes of cognitive deficits in survivors of pediatric brain tumors and how best to diagnose them and treat them.  Our intention was to move beyond a focus solely on the toxicities of therapy and to bring concepts of modern developmental neuroscience, development neuropsychology and cognitive science to bear on the problem. Our hope was to adjourn as collaborators on a new broad-based initiative to define the mechanisms of cognitive deficits in survivors of pediatric brain tumors and to evaluate novel therapeutic approaches to cognitive restoration.

The meeting included highly informative talks and interactive planning sessions. After two days of work, “Project Renew” emerged as a multi-institutional collaboration on new clinical trial proposals for cognition restoration, for the development of new imaging and neuro-psychological assessment tools and for the initiation of new laboratory based studies exploring the mechanisms of cognitive impairment after a pediatric brain tumor.  We expect to begin the first phase of this critically important and exciting research over the coming months. We hope that these efforts will result in urgently needed improvements in outcomes for survivors of pediatric brain tumors and provide new insights into cognitive development that will aid in the recovery of children who suffer cognitive impairment from any cause.

Paula McCarthy, LCSW Awarded Social Worker of the Year
Stacia Wagner                                                                                                             sw AWArD 
Children’s Brain Tumor Foundation was honored to support the Social Worker of the Year Award at the 38th Annual Association of Pediatric
Oncology Social Workers Conference in Philadelphia, PA. Pediatric oncology social workers provide clinical services for families at the time of diagnosis and throughout the cancer and brain tumor continuum. They are the voice, mediator, and advocate for families within many arenas including the medical team, schools and insurance companies. They work with families on a multitude of emotional, practical and life altering changes which are part of their “new” world. They also provide crucial research to advance the quality of life for the pediatric cancer community.

This year the award went to Paula McCarthy, LCSW at St. Jude Children’s Research Hospital in Memphis, TN. Mrs. McCarthy received award nominations from 11 of her social work colleagues, the Department Director, the Senior Vice President of Patient Care Services and the Chief of Division of Quality of Life and Palliative Care. Her colleagues wrote, “Paula has truly been the wind beneath our wings and she has helped our entire department soar higher each year”.

Thank you to all of the social workers whose dedication and hard work improves the quality of life for families every day. Congratulations Paula!

New for Professionals!
Professional Message Board

Are you a social worker working with pediatric brain tumor patients, in the bereavement community, or with brain tumor survivors? Join our message board at www.cbtf.org on Jenna's Corner.  Contact Wade for more information.


Upcoming Events:

Young Adult Online Chats with mAssKickers
June 30th 8pm (EST)

This online group, previously on Friends Health Connections, now meets on Google Hangouts. Contact Kayla for more information.

Heads Up Teen DC Group
July 21st, August 18th – 6pm
National Youth Transition Center, Washington DC

Teen brain tumor survivors meet on the third Monday of every month for a social skills support group.  Contact Kate Schafer for more information.

Heads Up Young Adult DC Group
June 19th, July 17th, August 21st
National Youth Transition Center, Washington DC

Young Adult brain tumor survivors meet on the third Thursday of every month for a social skills support group.  Contact Kate Schafer for more information.

Young Adult Heads Up Conference
June 19th-25th
Camp Mak-a-Dream, Gold Creek, MT

CBTF and Camp Mak-a-Dream collaborate annually to bring young adult brain tumor survivors together for education and as a way to connect with other brain tumor survivors.  HUC is filled for 2014, but you can contact Stacia at swagner@cbtf.org for more information on how a survivor you work with can attend in 2015.

Family Camp
June 20th – 22nd
Happiness is Camping, Hardwick,  NJ

Children's Brain Tumor Foundation brings families together for a 2 night 3 day camp atto ensure no family goes through a brain tumor diagnosis alone.  Families will participate in activities geared towards parents, patients, and siblings, as well as the family unit as a whole. The camp is filled for 2014, but you can contact Wade for more information on future camps.

Ezine Editors Meeting
July 16th, 5:30-7pm
CBTF Office (274 Madison Ave., New York, NY)

Teen and young adult survivors are meeting for the creation and implementation of a new survivor run web-based magazine.  If you know any teens or young adults who may be interested, contact Stacia.

14th Annual Kids' Cruise
July 26th – 9am
World Yacht, Pier 81

The Annual Family Kid’s Cruise brings families in the New York tri-state area to enjoy a morning of fun and relaxation aboard a cruise ship on the New York Harbor.  It is a free event. Families can register at: www.cbtfmeeting.org.  Contact Wade  for more information

Teen Heads Up Conference
August 4th-10th 
Camp Mak-a-Dream, Gold Creek, MT

CBTF and Camp Mak-a-Dream collaborate annually to bring teen brain tumor survivors together for education and as a way to connect with other brain tumor survivors. Ten HUC is filled for 2014, but you can contact Stacia for more information on how a survivor you work with can attend in 2015.




Current Research in Pediatric Brain Tumors

1. Cadogan, C; Immerman, J.,Lindsell, S., Mui, P., Rhee, M., Samant, L.T.  (2014 Mar.) The role of brain   tumor advocacy groups. Current Neurology and Neuroscience Reports., 14, (442).  Retrieved from: http://link.springer.com/article/10.1007/s11910-014-0442-z
This article discusses brain tumor advocacy as it relates to the unmet needs of this underserved population.  It focuses on non-profit patient advocacy groups who are attempting to fill in these gaps, as well as the evolution of these groups as they grow and develop.

2.  Hudson, M.M., Robison, L.L.  (2013 Dec.) Survivors of childhood and adolescent cancer: life-long risks and responsibilities.  Nature Reviews Cancer. 14, (61–70) Retrieved from: http://www.nature.com/nrc/journal/v14/n1/full/nrc3634.html
Pediatric cancer rates have improved significantly over the past four decades but this means that an understanding of long-term health issues and late term effects must be understood.  This article discusses those with who these responsibilities lie, including research and health care communities, survivor advocacy groups, and governmental and policy making entities.

3. Janda, M., Langbecker, D., Yates, P. (2013 Mar.).Health professionals' perspectives on information provision for patients with brain tumours and their families. European Journal of Cancer Care. 22:2 (179–187). Retrieved from: http://onlinelibrary.wiley.com/doi/10.1111/ecc.12011/abstract;jsessionid=732E933992317C95E751F49AF987B041.f04t02?deniedAccessCustomisedMessage=&userIsAuthenticated=false
This study uses concept mapping methodology to identify strategies that can improve information that is disseminated to individuals and families affected by brain tumors.

4. Cullen, J. (2014 Mar.) Because statistics don't tell the whole story: A call for comprehensive care for children with cancer. CA: A Cancer Journal for Clinicians. 64:2, (79-82). Retrieved from: http://onlinelibrary.wiley.com/doi/10.3322/caac.21215/full
Pediatric cancer patients and survivors face a set of issues that are different than that of adults, yet because much of medical research has not been focused solely on pediatric cancer, doctors have been forced to “recycle” treatment methods used on adults.  This article discusses the need for more comprehensive care that is specific to pediatric cancer patients.
5. Barr, R.D., D'Agostino, N., Nathan, P.C., Penney, A.M.,  Wilkins, K.L.  (2014 Jan. ) Supporting adolescents and young adults with cancer through transitions: position statement from the Canadian task force on adolescents and young adults with cancer. Pediatric Hematology Oncology. Retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/24390448
The Canadian Task Force on Adolescents and Young Adults with Cancer researches and discusses the experiences of AYA’s with cancer, calling for services that will address the needs of survivors as they transition from their diagnosis back into life as they need to deal with it as a survivor. 

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