frederica cassis, ps, mc and semiotics
DESCRIPTION
Psychological approach in a Hemophilia Center, Brazil International Hemophilia Congress, Paris, 2012. Frederica Cassis, PS, MC and Semiotics Hemophilia Center, Hospital das Clinicas , São Paulo, Brazil. FROM A TOTAL OF 27 STATES . PSYCHO-SOCIAL SERVICES IN BRAZIL. SOCIAL WORKER. - PowerPoint PPT PresentationTRANSCRIPT
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Psychological approach in a Hemophilia Center, BrazilInternational Hemophilia Congress, Paris, 2012
Frederica Cassis, PS, MC and SemioticsHemophilia Center, Hospital das Clinicas,
São Paulo, Brazil
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* European Accreditation Council for Continuing Medical Education
Conflict Disclosure - if conflict of interest exists
Research Support
Director, Officer, Employee
Shareholder
Honoraria
Advisory Committee
Consultant
In compliance with the EACCME* policy, WFH requires the following disclosures be made at each presentation:
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FROM A TOTAL OF 27 STATES
SOCIAL WORKER
PSYCHOLOGIST
57
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2
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PSYCHO-SOCIAL SERVICES IN BRAZIL
• 19 states with Social worker and Psychologist ( Alagoas, Amapa, Amazonas, Bahia ,Ceará, Goias, Minas Gerais, Mato Grosso, Distrito Federal, Pará, Paraíba, Pernambuco, Piauí, Paraná, Rio de Janeiro, Santa Catarina, Sergipe, São Paulo e Rio Grande do Sul)
• 6 states only Social worker ( Espirito Santo, Maranhão, Rio Grande do Norte, Rondônia, Roraima , Tocantins)
• 2 states with no psychosocial service(Acre, MTSul)
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CENTERS OF HEMOPHILIA IN SAO PAULO CITY
São Paulo
Brigadeiro Hospital
Santa Casa Hospital
Hemophilia Center of Hospital das Clinicas, FMUSP
Escola Paulista de Medicina-UNIFESP
Hematology Center
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Hemophilia Center of Hospital das Clinicas, FMUSP
PATIENTS IN HEMOPHILIA CENTER OF HC
H A 146HB 41Inhibitors 6Other bleeding disorders 47v W 93
Population in Brazil
2011: * Total PWH: 10.421PWH A: 8.746PWH B: 1.675P w von Willebrand: 4.480Other bleeding disorders: 1.649 PWH A and inhibitors: 642PWH B and inhibitors: 30
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SOME FACTS
1. Economic benefits of Comprehensive Care. World Federation of Hemophilia. Montreal. Website Facts Sheets for Government Advocacy. 3 April 2004;page 1
2. SPILSBURY, M. Haemophilia. (2004) vol 10, s4 25-293. CASSIS, F.R.M.Y., QUEROL, F.,FORSYTH, A., IORIO, ON BEHALF OF THE HERO
INTERNATIONAL ADVISORY BOARD. Haemophilia(2011), Psychosocial aspects of Haemophilia : a systematic review of methodologies and findings. 18: e101-e114. doi: 10.1111/j.1365-2516.2011.02683.x
• Social workers and psychologists are to be included in multidisciplinary care team
• Psychosocial workers are underutilized in most countries• Challenges for psychosocial workers around the world to
participate in research and publish their important and necessary results
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MULTI-DISCIPLINES =
SELF KNOWLEDGE
FOR ALL
NURSE
COMPLIANCE
Ilness,Health and
Healing
MOTIVATION
ODONTOLOGIST
PHYSIOTHERAPY
ORTHOPEDIST
HEMATOLOGIST
LAB DIAGNOSIS
PERSON WITH BLEEDING
DISORDERSOCIAL
WORKER
FAMILY
PHYSIOTHERAPIST
MULTI-HUMANS interacting in a healing process
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PATIENT’S PHASE OF LIFE
(child, adolescent, young adults, adulthood and aging) and(working, studying , in love, heart broken, depressed, divorcing …)
PATIENT’S PHASE OF TREATMENT
(home therapy, self-infusion program, prophylaxis, HCV treatment, hospitalization…)
PSYCHOEDUCATION IS PROVIDING INFORMATION THAT TAKES INTO CONSIDERATION BOTH
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A NEW CHAPTER FOR TREATMENT IN BRAZIL
GOOD NEWS! NEW PROGRAMS
• 2011 Primary Prophylaxis is available for children until 3 years of age and Immune tolerance program
• 2012 More factor: Raising from 1,1 to 3 UI FVIII per capita
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PSYCHOLOGY AND SOCIAL SERVICE SCREENING QUESTIONNAIRES
• Simple questionnaires that approach psychosocial issues
• Can be administrated by any professional in hemophilia care team
1. Screen and detect difficulties that don’t allow prophylaxis
2. Provide support and treatment through a following up
Objectives
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PSYCHOSOCIAL RESEARCH AND ITSPECULIARITIES IN EACH COUNTRY
On going projects
1. HERO project : Actual status and Brazil involvement1. 1. Publications: in Haemophilia
1. 1.1 In depth Qualitative analysis
2. Canada/Brazil : Cognitive debriefing of CHO-KLAT, HRQOL questionnaire for children.- Literacy study for CHO-KLAT application in Brazil2. 2.Publications: on going
3. Production of new cards for HEMOACTION with WFH
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• Preparing the families for this new era of prophylaxis by clarifying doubts and myths on bleed and activities and compliance
NEW AND OLD CHALLENGES
• Maintain the educational preventive approach tailoring it to each population peculiarities :(aging population and comorbidities - compliance in teenagers and young adults, diagnosis moment and parents, school years and autonomy with prophylaxis or on-demand programs…)