Suria, what do you want to be when you grow
up?
Trapezist, fire woman and
dentist!
From early age
Educating toreasure carers / parents that a
bleeding disorder is manageable
Psychology to enhance the individual's
potentialities
EDUCATING TOWARDS AUTONOMY
Pep PROGRAM
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
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 ?
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
What is it?
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
How do I feel?What is irritating me?What is hard for me?
Why do I bleed? What can I do to improve?
Can I be independent? Work? Can I go to camp?Can I play soccer?
why “they” insist in this treatment?
Why injecting so many times?
What is von willebrand? Hemophilia?
What is happening?
TRANSITIONING… ALWAYS
Information that shapes by:1. Preventing misconceptions about growing healthy with a bleeding disorders2. Clarifying doubts to direct energies towards achievements3. Being open to other possibilities knowing their true limitations
Deeper understanding of children and adolescents is important to deliver eficiently information
Enhancing coordination, developing senses, experiencing his body
functions 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.
BABY and boy/girl
hood phase (2-6)
High curiosity, more and more verbal fluency, no-no phase,
more collaboration
Feeling more in control, more himself
Click to edit the outline text format
Second Outline LevelThird Outline
Level Fourth Outline
LevelFifth
Outline Level
Sixth Outline Level
Seventh Outline Level
Eighth Outline Level
Ninth Outline LevelClique para editar os estilos do texto mestre
Segundo nível
Terceiro nível
Quarto nível
Quinto nível
Learning around 4
years old
Click to edit the outline text format
Second Outline LevelThird Outline
Level Fourth Outline
LevelFifth
Outline Level
Sixth Outline Level
Seventh Outline Level
Eighth Outline Level
Ninth Outline LevelClique para editar os estilos do texto mestre
Segundo nível
Terceiro nível
Quarto nível
Quinto nível
In baby and kiddo phase training soft skills is important
for our future worker:
BABY and boy/girlhood phase (2-6)
Healthy self-image and creativity in solving problems, fluency in
expressing ideas and feelings, identity is born
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!!
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.
School years 6,7-12
being a boy/girl and a tween
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.
From developmental
psychology:
Psychoeducation: important conquests: he
knows a lot about hemophilia, he may also
know how to infuse factor, encourage in decision-
making 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)
How this phase can influence positively our future worker?
6,7-12 being a boy / girland a tween
Learning to accept one-self , with different style, different way of being: tolerance
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!
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
Teenagers
(13-18)
They wish for independence andthey have their beliefs about
“things”
Click to edit the outline text format
Second Outline Level
Third Outline Level Fourth
Outline LevelFifth
Outline Level
Sixth Outline Level
Seventh Outline Level
Eighth Outline Level
Ninth Outline LevelClique para editar os estilos do texto mestre
• Segundo nível
• Terceiro nível
– Quarto nível
» Quinto nível
EXPLORATION and COMMITMENT:
finding the right balance!
Adolescence and jobs
This is the phase where they 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
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.
DEVELOPING SOFT SKILLS LIVINGWITH A BLEEDING DISORDER?
your personality is as important as diplomas.
is learned when a kid knows from childhood to talk, explain his
hemophilia
1 Good communication
by adapting, adjusting and solving problems in
management of his condition
2 Flexibility
can be learned by dealing early with different HCPs and feeling
part of the care team
3 Able to work in a team
dedication is acquired by being able to handle difficult health situations like pain or doing
physio programs to reach a goal
4 Resilience,
GIRLS AND BOYS From 18 to 36 years old in our Hemophilia Center
and other bleeding disorders
70
12
82 TOTALMedical field (3) nurses
Computer and electric field (12)
Family company (3) electric / electronic
services, installation of ownings, insurance
(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)
Administrative field (50)
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
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
Recommended
