In this study, an attachment theoretical perspective will be used to investigate the predictive testing process for hereditary, neurodegenerative disorders (Huntington*s Disease, CADASIL, HCHWA-D, FTD) and hereditary cancer syndromes (hereditary…
ID
Source
Brief title
Condition
- Other condition
Synonym
Health condition
gezonde personen met een risico op erfelijke neurodegeneratieve ziekten of borst- en eierstokkanker
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Independent variables: attachment style and cognitions
Dependent variables:
psychological well being: general mental health, psychopathology and
psychological symptoms, psychological reactions.
Secondary outcome
n.a.
Background summary
In clinical genetics, healthy individuals can be tested to find out whether or
not they are carriers of a specific hereditary disorder. Psychological
consequences of such predictive testing have been studied in recent years. A
systematic review of the literature on predictive testing for various genetic
disorders shows that test result (favourable/unfavourable) hardly influences
psychological well being. Carriers as well as non-carriers report increased
levels of psychological well being after the test. Non-carriers experience a
higher increase, which starts sooner after receiving test results than in
carriers. Emotional well being before the test predicts the level of well being
after the test. Individual reactions to the process and results of predictive
testing are difficult to predict. The proposed study may contribute to finding
individual factors associated with psychological reactions during and after
testing.
Study objective
In this study, an attachment theoretical perspective will be used to
investigate the predictive testing process for hereditary, neurodegenerative
disorders (Huntington*s Disease, CADASIL, HCHWA-D, FTD) and hereditary cancer
syndromes (hereditary breast and ovarian cancer).
According to Bowlby*s attachment theory, a child*s early attachment experiences
with its parent will result in a working model for social relationships
throughout life. This attachment system is activated especially in stressful
circumstances. An individual*s attachment style could therefore influence
decision making, emotion regulation, mobilization of social support, etc.,
before, during and after testing. Insight in the relationship between
attachment style and predictive testing would help improve the process of
psychological counseling that is offered in predictive testing programs.
Study design
The aim of the study is to investigate relationships between attachment style
and psychological reactions to testing, in person*s who apply for testing and
their partners. Prevalence of attachment styles in both groups
(neurodegenerative, hereditary cancer) will be compared and related to
prevalence in a norm group.
After the first counseling session, data will be gathered on biographical
characteristics, family history concerning the disease, attachment style,
cognitive emotion regulation, sense of coherence, social interactions and life
events. Psychological well being and psychological reactions to testing will be
assessed.
One week and six months after the individual received the results of the test,
information will be gathered on psychological well being and psychological
reactions of participants.
All data will be gathered through self report questionnaires.
Study burden and risks
no burden; participants might experience their participation as support
Postbus 9600
2300 RC Leiden
NL
Postbus 9600
2300 RC Leiden
NL
Listed location countries
Age
Inclusion criteria
50% at risk for Huntington's disease, CADASIL, HCHWA-D, FTD, BRCA1/2
Exclusion criteria
insufficient knowledge of Dutch
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 | NL18674.058.07 |