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Psychosocial care

Guideline objectives: to provide guidance on the psychosocial needs of people with EB, their families, and those who care for them; outline the current state of the science on the psychosocial implications of EB on patients and their family members; include recommendations for care; and identify gaps in knowledge to encourage future research.

Target users: professionals working to help those living with EB, employers, teachers, stakeholders, and policy makers.

Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guideline
Published 2019 | Funded by DEBRA Norway

Topics covered in this booklet include:

  • psychosocial care for individuals living with EB

  • psychosocial care for family and care givers of people with EB

  • self-care for professionals working with those affected by EB

Guideline objectives: to provide information on the psychosocial support that professionals can offer patients with EB and their family.

Target users: social and healthcare professionals/EB teams who are working with patients who have EB and their families.

Psychosocial guidance for social and healthcare professionals/epidermolysis bullosa (EB) teams

Topics covered in this booklet include:

  • providing psychosocial support

  • supporting development and connections

  • advocacy and education

  • pain management and wound care

  • patient-professional partnership

  • self-care and team support

  • key research priorities



Psychosocial care patient guides

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