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Psychosocial care for children with haemophilia and their parents in the Netherlands

P F Limperg1,2,3, L Haverman1,2,3, M Beijlevelt2,3

  • 1Psychosocial Department, Emma Children's Hospital, Academic Medical Centre (AMC), Amsterdam, The Netherlands.

Haemophilia : the Official Journal of the World Federation of Hemophilia
|March 22, 2017
PubMed

Insights

Children with hemophilia face psychosocial challenges. This study details comprehensive psychosocial care, including monitoring, psychoeducation, and interventions, to improve their health-related quality of life and independence.

Area of Science:

  • Pediatric Hematology
  • Psychosocial Health
  • Quality of Life Research

Background:

  • Children with hemophilia (HW) experience higher risks of psychosocial problems compared to healthy peers.
  • Psychosocial care is crucial for HW and their families, significantly impacting health and health-related quality of life (HRQOL).

Purpose of the Study:

  • To describe the psychosocial care model implemented by the Hemophilia Comprehensive Care Centre (HCCC) at Emma Children's Hospital.
  • To provide a framework for other institutions to organize and enhance psychosocial care for children with hemophilia.

Main Methods:

  • Multidisciplinary team approach focusing on prevention of psychosocial issues and medical stress.
  • Empowering children with hemophilia and their families with skills for independent living and high HRQOL.
  • Utilizing tools like www.hetklikt.nu for HRQOL monitoring and screening.

Main Results:

  • Core elements include HRQOL monitoring, psychoeducation (camps, school, parent meetings), and practical support (employment agency, educational facilities).
  • Psychosocial interventions encompass group programs (On Track) and specific tests (Haemophilia Coping and Perception Test).
  • Individualized care includes psychological counseling and referrals to specialized services.

Conclusions:

  • Sharing this model can lead to more structured and consistent psychosocial care across global HCCCs.
  • Standardization of psychosocial support has the potential to improve care processes and patient outcomes.
Abstract

Keywords:
haemophiliapaediatricsparentspsychosocial carethe Netherlands

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