Sexuality after stroke
on sexual activity (16–18). However, the 18 items
prioritized by our panel as core content for inclusion
in post-stroke sexual rehabilitation curricula reflect
a much broader understanding of sexuality. The ad-
ditional 27 content areas that achieved a high level
of consensus, but a lower level of priority, potentially
point to the need for a stepped care (32) approach to
sexual rehabilitation. Using a stepped care model, the
majority of stroke survivors and their partners could be
offered a core programme during the first stage (Step
1) of a sexual rehabilitation curriculum. In the second
stage (Step 2), those who need additional support could
select other content areas based on individual need
and preference. This stepped care approach would
need evaluation, but potentially offers a method of
addressing sexuality within existing stroke rehabilita-
tion services.
Participants in this study did not exclude sexuality
from any stage of the stroke rehabilitation continuum.
However, there was high level of consensus for the
subacute and chronic stages of stroke recovery as
key points when intervention should be offered. It is
perhaps not surprising that participants did not believe
sexual rehabilitation should be prioritized during the
earliest stages of stroke recovery, given that, for many,
the acute phase is focused on achieving medical sta-
bility and preparing for rehabilitation. This finding
also reflects previous research, where most stroke
survivors want counselling about sexuality between
3 and 12 months post-stroke (5). However, there
was a high level of consensus that access to sexual
rehabilitation services should be available throughout
the continuum. Clinicians and researchers therefore
need to be mindful of the individual nature of stroke
recovery and recognize that individuals will require
support to adjust to post-stroke sexuality at different
times in their recovery journey.
Previous research indicates that stroke survivors,
their partners and health professionals struggle to
openly discuss sexuality (1). However, despite this
struggle, participants in our study prioritized face-to-
face delivery by health professionals over other modes.
Given the high levels of discomfort reported by stroke
professionals regarding sexuality (11), this finding
suggests an urgent need for education and training to
support professionals as they assume this new role.
Further work is also needed to explore how stroke
survivors and their partners might be supported to take
on roles as peer counsellors, including their training
and education needs.
Participants prioritised rehabiltiation physcians, nur-
ses with specialist knowledge in stroke and sexuality,
psychologists, physiotherapists and sexologists/sex
educators/ counsellors as the preferred service provi-
ders. Previous research has also identified physicians
359
and nurses as key providers of sexual rehabilitation
counselling (5), but limited attention has been given
to the roles of allied health professionals in addres-
sing sexuality after stroke. Our study suggests a need
to adopt a multidisciplinary approach to sexual reha-
bilitation. Although sexologists may not be routinely
available for referrals by stroke rehabilitation teams,
our findings suggest that there is a need to develop
onward referral pathways for stroke survivors and
their partners when needs cannot be met by traditional
stroke rehabilitation professionals. Furthermore, stroke
survivors with communication difficulties need access
to speech pathologists who can support communication
about sexuality.
While the Delphi methodology allowed consensus
to be reached on the content and delivery of sexual
rehabilitation following stroke, there are some study
limitations. First, although we attempted to recruit
a diverse panel of experts, our panels were largely
composed of people who identified as heterosexual,
and who, for the most part, came from white Austra-
lian backgrounds. If their backgrounds had been more
diverse, different aspects of sexuality may have been
prioritized. Secondly, while we successfully recruited
stroke survivors with self-reported communication
difficulties, the nature of the survey meant that in-
depth description and assessment of communication
was not conducted. Thus, we may not have provided
a comprehensive description of all aspects of their
communication presentation. Readers should note
this limitation when considering how representative
our participants are of people with communication
impairment following stroke.
Finally, although there were high levels of consensus
among panel members regarding inclusion of content,
timing and mode of service delivery, panel members
failed to exclude any of the original content areas pre-
sented in the first round of data collection. This lack
of discrimination may reflect their limited exposure
to, and experience with, sexual rehabilitation. The
majority of stroke survivors and their partners in our
study did not receive any information or advice from
health professionals regarding sexuality. Therefore, it
could be argued that the knowledge of these experts
was limited, and responses represent their best judge-
ment on what content might be helpful. Despite this
limitation, we believe that the inclusion of open-ended
questions throughout the survey allowed panellists to
comment and express their views, resulting in greater
ecological validity of results.
In conclusion, there is a need for informed, evidence-
based interventions to address sexuality after stroke.
This study presents the opinions of stroke survivors,
their partners, clinicians and researchers. Inclusion of
stroke survivors with self-reported communication
J Rehabil Med 51, 2019