Sexuality in patients with a limb amputation and their partners: a qualitative study

Up till now, little research has been done on how patients with a limb
amputation and their partner experience their sexuality. This lack of research
can be explained by the following reasons:
- since both the patient and the professional caregiver do not talk about
sexual problems, there seem to be no signs of sexual dysfunctions that are
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 a patient 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 patients with a limb
amputation.

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

The limited amount of research that has been done on the sexual well-being of
amputees, is performed in the United States, Denmark, Japan and Nigeria and is
not representative for the Dutch population. Aditionally, the results of all
these research projects are different. 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.

In this research project we want to study Dutch patients and their partner to
explore how they experience their sexual functioning and sexual well-being
after the amputation. This qualitative research project with only a small
population of patients and partners will serve as input for a larger national
quantitative research project.

In the past there has been little attention for quality of life, of which
sexuality is an important part, in both scientific research and in clinical
practice. Nowadays things are changing and talking and thinking about the
sexual functioning and sexual well-being of the patient and his/her partner is
getting more and more important. This is also the case in the rehabilitation
department where questions about sexuality are not avoided anymore. Giving
attention to the sexual life of patients is slowly becoming a part of daily
clinical practice in the rehabilitation departments. This research project's
main aim is to study how patients with a limb amputation experience their
sexuality after the amputation. Since the patient's partner plays an important
role in how a patient experiences his/her sexual life, the partners are also
included in this research project. Partners are often not included in research
projects even though one may assume that they also experience some serious
changes in their sexual life after a limb amputation.
This qualitative research project will provide input for a much larger,
national, quantitative research project.

The study design is a qualitative exploratory study with convenience sampling.
Preparation of the study and data analyses will take place in the Centre for
Rehabilitation, location Groningen.

This qualitative study will consist of semi-structured interviews. The
interview will last for 30 to 45 minutes, with a maximum of one hour. The
patient/partner can decide to quit with the interview at any point in time, no
questions asked. The interview will take place at the patient's home, unless
the patient and/or the partner prefers another location.

Both patients and partners will be interviewed. It is not necessary that
patients and partners are part of the same couple. Patients and partners will
be included till we achieve data satisfaction. We expect that data satisfaction
will occur after having included 15 to 20 patients and 15 to 20 partners.
Patients and partners will be interviewed separately to make it easier to talk
about sexuality unhindered.
There won't be any intervention of any kind in this research project.

There are no risks involved in participating in this study. The burden for both
patients and partners is the amount of time they are asked to invest, being one
hour maximum for the interview. A sexologist with extensive experience on
discussing sexuality (J.E.A. Verschuren) will interview both the patients and
the partners.