The overall objective of this study is gaining insight into needs and options for psychological treatment of parents and their children with EB with regard to problems related to wound care.Specific objectives are: 1. To examine coping strategies of…
ID
Source
Brief title
Condition
- Skin and subcutaneous tissue disorders congenital
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
The most important parameters are HRQoL (child) and HRQoL (parent), and
experienced stress regarding the wound care (pain and anxiety)
Secondary outcome
Not applicable
Background summary
Epidermolysis Bullosa -abbreviated EB-I s a rare inherited skin disorder which
is congenital. There are different forms of EB, the nature and severity can
vary widely. Currently, there is no treatment for this disease. One of the
complex problems with EB is the repetitive, time-consuming and painful care of
the skin. When parents undertake the care of the wounds of their child with EB,
they often are the ones who cause the pain.It is clear from the clinical
practice that some parents (partly) transfer the care to nurses because of the
intensive appeal of the care. Observations from practice also show that
patients often suffer from anticipatory anxiety, the fear of pain that is
coming. It is likely that this wound care is stressful for both parents and
child which thus influences parent-child relationship.
Lack of knowledge on this issue makes it is difficult to develop proper
interventions to give effective and targeted support to patients and their
parents.
Study objective
The overall objective of this study is gaining insight into needs and options
for psychological treatment of parents and their children with EB with regard
to problems related to wound care.
Specific objectives are:
1. To examine coping strategies of both children with EB and their parents in
relation to their wellbeing.
2. To examine which coping strategies of children with EB and their parents
during wound care are associated with reduced stress for both members of the
dyad.
3. To describe the aspects of the wound care that are stressful for children
with EB and their parents.
4. To examine wellbeing of children with EB and their parents in relation to
other norm groups.
Study design
Observational, cohort study
Children with EB and their parents, registered at the Center for Blistering
Diseases in Groningen, are asked by letter to take part in the current study.
The letter explains the purpose and design of the study. Also enclosed is an
informed consent, which is to be completed, signed en returned by parents and
children. Children with EB and their parents are asked to fill out an online
questionnaire, over a secure portal. Completing the questionnaire takes
approximately one hour
Study burden and risks
The research is not risky. It might be confronting to think about the subject
wound care and to answer questions about it.
Hanzeplein 1
Groningen 9700 RB
NL
Hanzeplein 1
Groningen 9700 RB
NL
Listed location countries
Age
Inclusion criteria
1. Parent of a child with EB (EBS, JEB, DEB or Kindler syndrome)
2. Age of children / adolescents (boys and girls) between 0-25 years
3. The parent has the primary responsibility for the wound care
4. The child is registered as a patient at the Center for Blistering Diseases at the University Medical Center Groningen.
Exclusion criteria
1. Age of patients> 25 years
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL61172.042.17 |