Suria, what do
you want to be
when you grow
up?
Trapezist, fire
woman and
dentist!
EDUCATING TOWARDS AUTONOMY
From early age
Educating to
reasure carers /
parents that a
bleeding
disorder is
manageable
Psychology to
enhance the
individual's
potentialities
INCREASE INTEREST OF CARERS AND HCPs IN
DEVELOPMENTAL PSYCHOLOGY to
BETTER UNDERSTAND CHILDHOOD AND ADOLESCENCE
Parents and carers can learn from other successful
experienced parents' stories 1
Pep PROGRAM
How to raise and attend the needs of a child with hemophilia
2
Understanding the different stages of accepting hemophilia and different
psychological interventions 3 4
What are the different issues and needs in childhood, teens years toward adulthood
5
DUTREIL, S., RICE, J., MERRITT, D. and KUEBLER, E. J. (2011), Parents Empowering Parents (PEP) Program: understanding its impact on the
bleeding disorders community. Haemophilia, 17: e895–e900. doi: 10.1111/j.1365-2516.2011.02512.x /
KELLY, L. (2001) Raising a child with
hemophilia /
CASSIS, F (2007) Psychosocial Care for People with Haemophilia.Treatment for haemophilia, number 44 /
YOUNG, G. (2012),
From boy to man: recommendations for the transition process in haemophilia. Haemophilia, 18: 27–32. doi: 10.1111/j.1365-2516.2012.02893.x /
SIMMONS, G. M., Frick, N., Wang, A., Miller, M. E. and Fragueiro, D. (2014), Identifying information needs among children and teens living with
haemophilia. Haemophilia, 20: 1–8. doi: 10.1111/hae.12223
PSYCHO-EDUCATION ?
What is it?
A psychological intervention where information about etiology, symptoms and
treatment is given by a psychotherapist / counsellor to the patient and family
Objectives:
• knowing more about 1) your-self and 2) your blood clotting disorder and management - each one has
his /her own way to live the chronic condition
• provide costumized orientations about how to deal with the symtoms and optimize the treatment by
good adherence
• improve day-to-day life by feeling managing better the condition
How?
1) take into consideration the cognitive stage and phase of development
2) using expressive techniques, educational tools like flash cards,videos, phone assistence and
specific trainings
BUILDING IDENTITY AND PSYCHO + EDUCATIONAL
approach
why “they” insist in this
treatment?
Why injecting so many times?
What is von willebrand?
Hemophilia?
What is happening?
Why do I bleed?
What can I do to improve?
How do I feel?
What is irritating me?
What is hard for me?
Can I be independent? Work?
Can I go to camp?
Can I play soccer?
TRANSITIONING… ALWAYS
Deeper understanding of children and adolescents is
important to deliver eficiently information
Information that shapes by:
1. Preventing misconceptions about growing healthy with a bleeding disorders
2. Clarifying doubts to direct energies towards achievements
3. Being open to other possibilities knowing their true limitations
Enhancing coordination, developing
senses, experiencing his body
functions
High curiosity, more and more
verbal fluency, no-no phase,
more collaboration
Feeling more in control,
more himself
Psychoeducation: Normalizing by
mentioning the bleeding disorder's
name, accepting treatment and
proud to be gradually active in it.
Listen comprehensively to him /her
when not liking or afraid. Reassure
by giving her/him solutions like a
medical kit, box to keep things.
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text format
 Second Outline
Level
Third Outline
Level
Fourth Outline
Level
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Healthy
self-image
and creativity in
text
format
BABY and boy/girlhood
phase (2-6)
In baby and kiddo phase
training soft skills is important
for our future worker:
solving problems, fluency in
expressing ideas and feelings,
identity is born
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Level
Third Outline
Level
And if he /she wants to be a rock
star, or a soccer player JUST LET
magic be, listen, ask the kid
questions, let him dream!!
Fourth Outline
Level
From
developmental
psychology:
more awareness of the
differences, at school
comparison occur not only
physical, mental also in skills
and the limitations are clear.
His parents are not the only
reference.
sociability and first crisis in his personality identity:
avoid criticizing about their struggles with academics,
sports or making friends. Meanwhile, encourage your
tween to continue activities that he or she is good at.
Psychoeducation:
important conquests: he
knows a lot about
hemophilia, he may also
know how to infuse factor,
encourage in decisionmaking process about his
treatment, providing
strategies to deal with being
different and how it affects or
not his/her life (cases of
abseenteeism + peer support
for ex)
Learning to accept one-self , with different
style, different way of being: tolerance
6,7-12 being a boy / girl
and a tween
How this phase can influence
positively our future worker?
Resilience: knowing the positive effect of adhering to
prophylaxis, he can understand early how is
constructive to be constant, disciplined
learn to defend his ideas.... learning to give arguments.
In this phase they can wish to be several things at the same time! Like suria...or they change
opinion easily.... just tell him that if they wish to be a soccer player, he will have to plan that, to
work towards it and see if he/she is really able to.
DREAMING and REALITY ...but LET them feel in control of their dream.
Second crisis: lot of changing:
tastes, cloths, style, friends,
activities...EXPLORING phase and
that's healthy!
They wish for independence and
they have their beliefs about
“things”
Psychoeducation:
• more and more importance in listening to
his needs, his experience related to
prophilaxis or other treatment.
• Commitment in treatment is gradually
acquired :Important to involve him/her in
the HOW he or she wants to do it,
discussing firmly about his
responsibilities and his rights. More
autonomy in camps, travels, sleep over
and management of his body, his
friendships, his choices
Adolescence and jobs
EXPLORATION and
COMMITMENT:
finding the right balance!
 Click to edit the
This is the phase where they
outline
text format
usually answer:
I don't know
what I want to be! No ideaaaaa!
No more imagination or magic.
Moratorium phase...no decisions
but experiencing or watching
other's ways
 Second Outline
Level
Third Outline
Level
Parents / carers' role:
Intuition to feel their young boy /girl...to let them explore and change without critize the fact they
don't want to continue something...the notion of commitment comes when they experience
severals “short jobs” , discuss with other experienced professionals and try again.
Fourth
Outline Level
DEVELOPING SOFT SKILLS LIVING
WITH A BLEEDING DISORDER?
your personality is as important as diplomas.
1
3
Good communication
is learned when a kid knows from
childhood to talk, explain his
hemophilia
2
Able to work in a team
can be learned by dealing early
with different HCPs and feeling
part of the care team
Flexibility
by adapting, adjusting and
solving problems in
management of his condition
4
Resilience,
dedication is acquired by being
able to handle difficult health
situations like pain or doing
physio programs to reach a goal
GIRLS AND BOYS
From 18 to 36 years old in our Hemophilia Center
and other bleeding disorders
Medical field
(3) nurses
Computer and electric field (12)
82 TOTAL
70
Family company (3)
Administrative field (50)
electric / electronic
services, installation of
ownings, insurance
12
Artistic field (2),
Jornalistic (1) , Teaching
fields (4)
Independent professions(8)
car wash, bakery, seller of electrical materials,
school bus , tire repair shop, driver, floristry, painter
(3 restaurant, billing, 3 shops,
notary, 8 assistents, 2 marketing,
6 pharmacy shops, 2 banking, 2 client
services, hospital, baking, pressing,
2 security, 6 auxiliary administration,
driver, 2 accounting, administrator,
bus collector, concierge, hotel ,
mockups building, nanny)
FINAL CONSIDERATIONS
As a
psychotherapist:
Begin in childhood
to facilitate the
development of a
child by letting him
be + learning about
his condition
As a parent:
A blood clotting
disorder is part of the
child so do not focus all
life events on that.
Normality comes when
enjoying him/her just
living
To win a job, to be
autonomous and
productive is healthy, is
part of enjoying a good life.
Carers must provide the
best conditions social,
psychological, spiritual,
medical....and then, we
must LET THEM try,
experience ...and SOAR
Thank You!
Frederica R.M.Y Cassis
frederica.cassis@gmail.com