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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.

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psychological approach in a hemophilia center brazil international hemophilia congress paris 2012

Psychological approach in a Hemophilia Center, BrazilInternationalHemophilia Congress, Paris, 2012

Frederica Cassis, PS, MC and Semiotics

Hemophilia Center, Hospital das Clinicas, São Paulo, Brazil

from a total of 27 states
FROM A TOTAL OF 27 STATES
  • PSYCHO-SOCIAL SERVICES IN BRAZIL
  • SOCIAL WORKER
  • PSYCHOLOGIST
  • 7
  • 2
  • 2
  • 5
  • 2

19 states with Social worker and Psychologist( Alagoas, Amapa, Amazonas, Bahia ,Ceará, Goias, Minas Gerais, MatoGrosso, 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)

centers of hemophilia in sao paulo city
CENTERS OF HEMOPHILIA IN SAO PAULO CITY

São Paulo

Brigadeiro Hospital

Hemophilia Center of Hospital das Clinicas, FMUSP

EscolaPaulista de Medicina-UNIFESP

Santa Casa Hospital

Hematology Center

patients in hemophilia center of hc
PATIENTS IN HEMOPHILIA CENTER OF HC
  • Hemophilia Center of Hospital das Clinicas, FMUSP

Population in Brazil

  • H A 146
  • HB 41
  • Inhibitors 6
  • Other bleeding disorders 47
  • v W 93

2011: * Total PWH: 10.421

PWH A: 8.746

PWH B: 1.675

P w von Willebrand: 4.480

Otherbleedingdisorders: 1.649

PWH A andinhibitors: 642

PWH B andinhibitors: 30

some facts
SOME FACTS

¹

2

3

  • Economic benefits of Comprehensive Care. World Federation of Hemophilia. Montreal. Website Facts Sheets for Government Advocacy. 3 April 2004;page 1
  • SPILSBURY, M. Haemophilia. (2004) vol 10, s4 25-29
  • 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

multi disciplines

MULTI-HUMANS interacting in a healing process

MULTI-DISCIPLINES =
  • COMPLIANCE
  • Ilness,
  • Health and Healing
  • MOTIVATION
  • NURSE
  • HEMATOLOGIST
  • PERSON WITH BLEEDING DISORDER
  • SOCIAL WORKER
  • FAMILY
  • PHYSIOTHERAPIST
  • LAB DIAGNOSIS
  • SELF KNOWLEDGEFOR ALL

ODONTOLOGIST

PHYSIOTHERAPY

ORTHOPEDIST

psychoeducation is providing information that takes into consideration both
PSYCHOEDUCATION IS PROVIDING INFORMATION THAT TAKES INTO CONSIDERATION BOTH

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…)
a new chapter for treatment in brazil
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
psychology and social service screening questionnaires
PSYCHOLOGY AND SOCIAL SERVICE SCREENING QUESTIONNAIRES
  • Simple questionnaires that approach psychosocial issues
  • Can be administrated by any professional in hemophilia care team

Objectives

1. Screen and detect difficulties that don’t allow prophylaxis

2. Provide support and treatment through a following up

psychosocial research and its peculiarities in each country
PSYCHOSOCIAL RESEARCH AND ITSPECULIARITIES IN EACH COUNTRY
  • On going projects
  • Canada/Brazil : Cognitive debriefing of CHO-KLAT, HRQOL questionnaire for children.- Literacy study for CHO-KLAT application in Brazil
    • 2.Publications: on going
  • HERO project : Actual status and Brazil involvement
    • 1. Publications: in Haemophilia
      • 1.1 In depth Qualitative analysis

Production of new cards for HEMOACTION with WFH

new and old challenges
NEW AND OLD CHALLENGES
  • Preparing the families for this new era of prophylaxis by clarifying doubts and myths on bleed and activities and compliance
  • 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…)
merci thank you

MERCITHANK YOU

frederica.cassis@gmail.com

www.blood4.com