The objective of the research is to examine the perspective of adults with Cystic Fibrosis concerning sexuality and to examine which factors are of influence, so that we 1.) acquire insight in giving meanings and perception of sexuality in the…
ID
Source
Brief title
Condition
- Other condition
- Respiratory disorders congenital
Synonym
Health condition
ontwikkeling sexualiteit bij chronisch zieke patienten
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
The studyparameters exist from three coordinating topics. The first is the
influence of CF on the development of sexuality. The second topic relies on the
information concerning sexuality which adults with CF have received during
their youth. The third topic relies on the experiences with sexuality and
relationships of CF-patiënts.
Secondary outcome
Undefined
Background summary
Cystic Fibrosis is a sickness which is not as yet to heal. It is a hereditary
sickness which is caused by a faulty gen, what leads to the shaping of thick,
tough mucilage in the air ways. This mucilage piles up himself and hampers
breathing. Moreover this mucilage promotes the beginning of chronic
airwayinfections, which causes much damage to the lungs and eventually lead to
death. For the live of a young CF-patiënt this means that he or she has to keep
up his condition continuously and that their development of growth lags behind.
Because of this, puberty frequently starts at an older age than with healthy
youths. Because there is not yet enough information concerning the influence
of CF on sexuality and relations of young people, it is necessary that this
will be examined more closely. An important fact with this is the fast
development of forms of treatment, as a result of which CF-patients become
older than before. Because of this they will also have more experience with
sexuality and relations then was the case with former patients. It is therefore
important for the knowledge concerning CF that the sexuality perception of
young people with this sickness will be examined.
Study objective
The objective of the research is to examine the perspective of adults with
Cystic Fibrosis concerning sexuality and to examine which factors are of
influence, so that we 1.) acquire insight in giving meanings and perception of
sexuality in the adolescent and adult period at people with CF.
2.) are able to identify CF-specific problems of sexuality
3.) establish a scientific well composed follow-up study about the development
of sexuality at adolescents with CF as a result of the insights which we will
obtain with this pilotstudy.
4.) Can improve ambulatory manner with young people in the follow-up study on
the basis of the ideas of the adults who cooperate in this preliminary
analysis.
Study design
Type of research
The preliminary analysis is explorative and describing. The basis is
socioscientific research. No hypotheses are put.
Method
At this research only one method is used, namely the interview. The
participants to the preliminary analysis will be asked to agree with an
interview concerning the subjects sexuality, relationships, experiences and
information. During this interview they are asked to their own story to us by
means of a semi-structured list with subjects (topic list - see appendix). The
interview takes place on a location chosen by the respondent and will last no
longer then an hour. There will be a 10 euro book coupon as compensation. The
interview is entirely taken on tape and will be written out afterwards by the
independent research worker. The final report will be transmitted to the
participants. They are asked to read it and to provide us comments where
necessary. The revised report is offered to the participants for approval. The
tape will be destroyed after finalizing the research and all data will be
considered as confidential. Also the data will be made anonymous.
Study burden and risks
Advantages and disadvantages for the participant
There are no advantages for the participant to this research.The only
disadvantage for the participant to this preliminary analysis is that it costs
time. No interventions are performed and the general practitioner is thus not
informed concerning this research. In stead, we have chosen to inform a welfare
officer about this study so that the participant can turn to this person in
case of possible questions or observations as a result of the interview.
Risks
The interview concerns a sensitive and personal subject. It is possible that
the interview rakes up memories which makes the respondent feel uncomfortable
at. This is also applied to the research worker who will anticipate on the
indicators which the respondent delivers, such as avoiding a question or
possible silences.
Of course the interview will be stopped as soon as the participant indicates
this.
s-Gravendijkwal 230
Postbus 2040 3000 CA Rotterdam
Nederland
s-Gravendijkwal 230
Postbus 2040 3000 CA Rotterdam
Nederland
Listed location countries
Age
Inclusion criteria
There has been chosen for this population, because they are adults and able to make their own decisions. Given the subject it seemed our judicious to talk firstly with adults concerning feelings on sexuality. Moreover their insights in the follow-up studies can produce a more and more careful approach of adolescents.
Exclusion criteria
Patients with Cystic Fibrosis <= 20 years fall outside the population of this research, because we would like to talk with adults as "experience experts" firstly. Furthermore we will select people on psychological strain. If they're already involved in other research projects or if they're busy with a lungtransplantation for instance, we won't approach them with this research.
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 | NL12740.078.06 |