Transcript Rates and Correlates of Positive Adjustment among Children

Dana Vass, LSW
Social Worker
Lamia P. Barakat, PhD
Pediatric Psychologist
Director of Psychosocial Services
The National Children’s Cancer Society
Web Conference
April 3, 2012
at The Children’s Hospital of Philadelphia
Sarah Pajak, MS, CCLS
Child Life Specialist
The Cancer Center
Knowledge is Power
at The Children’s Hospital of Philadelphia
The Cancer Center
Web
Conference
Outline
 Typical reactions to cancer
diagnosis and treatment
 Education needs of
children and families
 When and how to educate:
Developmental
considerations
 Resources available
through child life services
and social work
 Tips and additional
resources
 Benefits and barriers of
education
Feeling confused or uncertain.
Feeling upset, frustrated, or numb.
Feeling alone or like others don’t understand.
Worry: Having trouble keeping your mind
cancer and what will happen in the future.
 Trouble concentrating or sleeping.
 Wanting to avoid places (such as the clinic or
hospital) and reminders of the illness.
at The Children’s Hospital of Philadelphia




The Cancer Center
Strong feelings are expected in the days
and weeks after diagnosis and can include:
Being away from home
Getting needles
Pain
Losing hair
Being separated from family and friends
Seeing other children who are sick
Not knowing what is going to happen
Thinking you did something to cause it
Being afraid of dying
at The Children’s Hospital of Philadelphia









The Cancer Center
Cancer diagnosis and treatment can be
upsetting for children and families due to:
 Information about the specific diagnosis
 Information about treatment / Protocol for treatment
 What to expect in terms of psychosocial adaptation
 Protocol for adaptation:
 Available in terms of resources for children and
families
 When have you have questions, who do you ask?
at The Children’s Hospital of Philadelphia
 What to expect:
The Cancer Center
What Do Families Need to Know?
 Can form wrong ideas about what is happening
(using their active imaginations) and ideas can be
worse than reality.
 Feel isolated from others.
 Feel uncomfortable asking questions.
 May come to mistrust information if hear it from
others.
 At the same time, parents often struggle with
how to explain the illness and its treatment.
 Remember, resources are available, if you
would like help with educating your child!
at The Children’s Hospital of Philadelphia
 Without accurate/appropriate information,
children (patients and their siblings):
The Cancer Center
Why Children Need to Know
 Find quiet time when you and child are calm and
can focus
 Minimize chances for interruptions
 Treatment-related transitions:
 Diagnosis
 Relapse
 Transitioning from one type of treatment to
another or to transplant
 Moving off treatment
 Survivorship
The Cancer Center
 Personal considerations:
at The Children’s Hospital of Philadelphia
When to Educate
 Make explanations clear and simple (at all ages).
 Provide information as needed in the moment or for
this stage in treatment.
 Increase information as child asks questions.
 Be willing to admit when you don’t know answer to a
question (then find the answer).
 As children age (and mature), they should be
involved in all discussions with health care team and
provided some measure of control over decisions.
at The Children’s Hospital of Philadelphia
 As a starting point, ask questions to figure out what
your child knows.
The Cancer Center
Developmental Considerations
at The Children’s Hospital of Philadelphia
Child Life
Social Work
Additional Resources
The Cancer Center
Tips for Education and Resources
Child Life Specialists
Child Activity Coordinators
Art Therapists
Music Therapists
School Teachers
Paw Partners
The Voice/Media Programming
at The Children’s Hospital of Philadelphia
•
•
•
•
•
•
•
The Cancer Center
Members of the Child Life, Education
& Creative Arts Therapy Department
(at The Children’s Hospital of Philadelphia)
at The Children’s Hospital of Philadelphia
 What is a Child Life Specialist?
A certified professional that works with
patients and families to reduce the stress
and anxiety that may be associated with the
hospital experience and enables children
and families to cope in a positive manner.
 What is Child Life’s role?
Work with the Multidisciplinary Care Team
to meet the developmental, psychosocial,
emotional, and educational needs of
patients and families.
The Cancer Center
What Is Child Life?
at The Children’s Hospital of Philadelphia
 Developmentally appropriate play and activity
involvement
 Therapeutic Play; Medical Play
 Developmentally appropriate preparation for
procedures
 Procedural support; Education surrounding
medical interventions
 Coping and Distraction
 Coping Techniques/Strategies; Comfort Holds;
Comfort Items; Guided Imagery/Deep Breathing
 Behavior interventions, Schedules, and Reward
Charts/Systems (when appropriate)
The Cancer Center
What can Child Life Specialists provide
to help my child with cancer?
Is a child’s way of expressing
him/herself.
Allows children to work out problems
and aggressions.
Offers us an opportunity to educate,
reinforce and clear up misconceptions
about diagnosis, hospitalization, etc.
at The Children’s Hospital of Philadelphia
Play:
The Cancer Center
“Playing with a purpose”
Reasons for a threatening or painful
procedure.
Anticipated sequence of events and the
sensations that accompany the experience.
at The Children’s Hospital of Philadelphia
Psychological preparation involves the
communication of accurate,
developmentally appropriate information in
advance of an experience.
Information that includes:
The Cancer Center
Psychological
Preparation
Behaviors
What I do in
response to
stress?
Emotions
What I am feeling
emotionally?
Thoughts
What I think or
say to myself?
at The Children’s Hospital of Philadelphia
Physical Reactions
How my body
responds to stress?
The Cancer Center
Cognitive-Behavioral Model of Stress and Coping
 “I’m Still Me”
 “Oncology Stupology, I Want to go Home”
 “I Feel Silly and other Emotions that Make my Day”
 Patient Puppets: Chemo Duck, Legacy Dolls,
Shadow Buddies, Patches
 Beads of Courage Program
 Artist in Residence Program
 SuperSibs!
 SibShops
 Oncology Sibology
at The Children’s Hospital of Philadelphia
 Age appropriate literature such as:
The Cancer Center
Resources available through Child Life
Specialists and Child Life Departments
2. I want to offer a patient a chance to LEARN COPING STRATEGIES
for use during painful/intrusive treatments.
3. My patient will benefit from therapeutic interventions such as
PREPARATION, DISTRACTION, and PAIN MANAGEMENT.
4. I would like a patient TO DEMONSTRATE HIS/HER KNOWLEDGE of
ongoing care routines as revealed through his/her play.
5. I would like to know a PATIENT’S PERCEPTION of his/her diagnosis
and treatment as revealed through play.
6. A patient will have SURGERY and needs pre-surgical information in a
simple, easy to understand language that is developmentally
appropriate.
at The Children’s Hospital of Philadelphia
1. I want a patient to know about the procedure that will occur. CALL
CHILD LIFE FOR THERAPEUTIC MEDICAL PLAY AND
INTERVENTION.
The Cancer Center
A Dozen Reasons to Call Your Child Life Specialist
(1 – 6)
8. A patient wants to learn how to SHARE INFORMATION ABOUT
HIS/HER ILLNESS OR INJURY with friends, classmates, and
others.
9. I want a patient’s CAREGIVER to have additional information
about the IMPACT OF THE ILLNESS ON THEIR CHILD’S
DEVELOPMENT.
10. I would like to ensure that a patient encounters POSITIVE
LEARNING EXPERIENCE while hospitalized.
11. A patient needs assistance in dealing with STRESS and/or
ANXIETY regarding their medical experience.
12. I would like to ASSESS OUR ENVIRONMENT THROUGH THE
EYES OF A CHILD.
at The Children’s Hospital of Philadelphia
7. A patient has SIBLINGS WHO NEED ASSISTANCE IN
UNDERSTANDING their brother or sister’s illness or injury.
The Cancer Center
A Dozen Reasons to Call Your Child Life Specialist
(7 – 12)
at The Children’s Hospital of Philadelphia
The Cancer Center
Social Work






Attend family meetings
Provide supportive counseling
Provide links to community and financial resources
Negotiate practical issues related to cancer treatments
Provide a bridge to school re-entry
Coordinate of psychosocial care
 Social workers re-evaluate patient and family needs
at each discharge, changes of treatment plans,
coming off therapy, etc.
at The Children’s Hospital of Philadelphia
 Social worker provides the initial assessment of
psychosocial needs and integrates other
psychosocial professionals into care, as appropriate.
 Across the treatment continuum – social workers:
The Cancer Center
What is a Social Worker?
at The Children’s Hospital of Philadelphia
The Cancer Center
Social Work
and Family Center Care
at The Children’s Hospital of Philadelphia
 New Cancer Diagnosis – Social work performs a
psychosocial assessment that looks at family and
patient understanding of and reaction to the diagnosis,
explores areas of strengths and needs, as well as
unique family circumstances that may impact care and
adjustment.
 Supportive Counseling – Each social work
assessment includes anticipatory guidance about the
road ahead for patients and families and normalization
of initial feelings of shock, sadness, fear and grief.
Coping strategies are discussed and tailored to the
individual patient and family.
 Communication – Helping families communicate with
the medical team and also their children and family
members.
The Cancer Center
Social Work Services
 School Advocacy – Social Work collaborates with
schools to arrange homebound tutoring and
assistance with returning to school after the cancer
diagnosis. The goal is to safeguard patients’ rights
while providing guidance regarding patients’ concerns
about physical changes such as hair loss and other
bodily changes that may impact return to school.
at The Children’s Hospital of Philadelphia
 Community Resource Planning – Social work links
patients and families to numerous services including,
but not limited to, state funded medical assistance,
SSI, local financial assistance, wish and various
childhood cancer foundations, transportation
assistance, lodging, and other hospital and community
resources as needed.
The Cancer Center
Social Work Services
Websites
 www.thenccs.org
 www.curesearch.org
 www.alexslemonade.org
 www.lotsahelpinghands.com

New patient bags

Childhood cancer books
 Childhood Leukemia: A Guide for Families Friends, & Caregivers
by Nancy Keene
 Drums, Girls & Dangerous Pie by Jordan Sonnenblick

Family Support Groups

Personal websites/blogs
 www.caringbridge.org
 www.carepages.org

Social workers also have resources for transportation, hair
loss/wigs/hair alternatives, wish organizations, etc!!!
The Cancer Center

at The Children’s Hospital of Philadelphia
Resources/Education
provided by Social Work
http://www.chop.edu
/service/oncology
/home.html
at The Children’s Hospital of Philadelphia
Resources for
Families at:
The Cancer Center
Additional
Resources
at The Children’s Hospital of Philadelphia
The Cancer Center
Barriers and Benefits
of Education
Parental barrier – a parent whose child has just been diagnosed with cancer
understandably encounters much stress, anxiety and uncertainty.
 It is crucial in the time period following diagnosis for families to receive support
and education to reduce some external stressors so that parents’ focus can be
on their child.

Patient barrier – a patient may be sick at time of diagnosis and a parent’s
attention may need to be on their child. Patient may be craving attention from
family or have anxiety or fears that need to be addressed.
 Staff can help to incorporate education at important points during treatment.
 Psychosocial staff can assist with family coping to allow time for education and
resources that may help maintain a feeling of empowerment even during
crises.

Healthcare barrier – the hospital/clinic environment is often fast paced and busy.
Physicians and other staff have many patients to see so time with each family is
sometimes limited.
 What can you do? - take notes, keep questions in a log so you are prepared
when physicians and other team members visit.
 Learn about each of the staff’s role so that you know who might be best to go
to with questions or concerns.
 When in doubt, just ask!
The Cancer Center

at The Children’s Hospital of Philadelphia
Barriers to Education
 Provides education, answers logistical questions (i.e. where do I
park?), and gives staff contacts.
 Other barriers – work, finances, family situation – interfere
with accessing community resources
 Helping the medical team to understand a family--where
they are at and what other challenges they may be facing.
 Enlisting support from psychosocial team, community and
family members.
 Utilizing education, financial and community resources to
reduce or alleviate barriers.
at The Children’s Hospital of Philadelphia
 Lack of awareness of resources
 This is where psychosocial staff can help in presenting
available hospital or community based resources.
 Psychosocial handbook - helpful to have written information
especially at diagnosis when parents hear so much new
information.
The Cancer Center
Barriers to Education continued
at The Children’s Hospital of Philadelphia
 Increased sense of predictability and control.
 Reduced distress.
 Provides opportunities for parents and
children to ask questions, express fears,
reduce uncertainty.
 Increased sense of confidence in ability to be
a resource and guide for their child.
 Builds trust with the medical team.
 Empowers parents to act as the “experts” on
their child, more fully participating in
treatment decisions and caring for their child.
The Cancer Center
Benefits of
Education
at The Children’s Hospital of Philadelphia
The Cancer Center
QUESTIONS?