Sexuality in people with a limb amputation: a quantitative study

Up till now, little research has been done on how people with a limb amputation
experience their sexuality. This lack of research can be explained by the
following reasons:
- the fact that both the person with a limb amputation and the professional
caregiver do not talk about sexual problems, feeds the assumption that there
are no sexual dysfunctions connected with a limb amputation;
- the fact that professional caregivers do not feel responsible for this part
of the treatment; most of the professional caregivers who work with people with
a limb amputation believe that the rehabilitation process stops when the
patient uses his/her prosthesis succesfully;
- the physical functioning of someone with a limb amputation who is wearing a
prosthesis is generally better than the physical functioning of other
rehabilitation patients. Because of this, one assumes that there are also no
problems with sexual functioning or sexual well-being in people with a limb
amputation.

However, there are indications that a limb amputation can influence the sexual
functioning and sexual well-being of people. A diminished feeling of
self-esteem, fear for rejection, inadequate coping and role changes are some of
the psychosocial adjustments that people experience after a limb amputation.

The limited amount of research that has been done on the sexual well-being of
people with a limb amputation, is performed in the United States, Denmark,
Japan and Nigeria, and is not representative for the Dutch population.
Additionally, the results of all these research projects differ. Some
researchers report no sexual problems at all, while others report a diminished
sexual frequency and less sexual satisfaction in people with a limb amputation.

The results of our own qualitative study on this topic (Seksualiteit bij mensen
met een arm- of beenamputatie en hun partner: een kwalitatief onderzoek; METc
2010/179) have shown that a limb amputation can influence someone's sexual life
in several ways. With this survey we want to include a larger group of people
in order to get a better idea of how people with a limb amputation experience
their sexuality. In this study, when referring to sexuality, we refer to both
sexual functioning (are there any problems concerning sexual anatomy, for
example erectile dysfunction) and sexual well-being (how does someone
experience his/her sexual functioning). The questionnaire addresses issues
like sexual desire, arousal, orgasm, pain during intercourse, frequency of
sexual activities and sexual well-being. Psychological factors like acceptance
of the amputation, self-image, personality and the parter relationship will
also be addressed. To conclude, participants are asked whether sexuality was
discussed during the time in the rehabilitation center.

This quantitative research project was preceded by a qualitative study
(Sexuality in people with a limb amputation and their partner: a qualitative
study; METc 2010/179). The aims of the current study are to explore:
- which sexual problems occur in people with a limb amputation in the
Netherlands
- how someone with a limb amputation experiences these problems
- whether professional caregivers address the issue of sexuality during the
rehabilitation process

This study is a cross-sectional quantitative study. The questionnaire that we
use is a combination of different questionnaires, including the Hospital
Anxiety and Depression Scale (HADS), the Maudsley Marital Questionnaire (MMQ),
the Amputee Body Image Scale (ABIS), the Survey on Sexual Counselling, the
Survey on Sexuality, and the Short Sexual Functioning Scale (SSFS). All these
questionnaires were used in the past -in this or other combinations- in
research on disease/disability and sexuality.

Filling out the questionnaire takes up maximum 30 minutes. No intervention will
take place.

Preparation of the study, processing the results and analysing the data will
all take place in the Centrum voor Revalidatie, locatie Groningen. Data will be
analysed using the software program SPSS.

There are no risks involved in participating in this study. The burden for
participants is the amount of time they are asked to invest to fill out the
questionnire, being 30 minutes maximum. It is however possible that some
questions might come across as being confronting and/or (psychologically)
burdening. If necessary, participants can always consult with dhr. drs. Ernst
Schrier, rehabilitation psychologist at the Centrum voor Revalidatie, location
Groningen, after filling out the questionnaire.