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
