Sexuality after stroke
sexuality found to be important to stroke survivors (1).
Furthermore, the efficacy of any sexuality intervention
for stroke survivors and their partners remains largely
unexplored. This lack of research into sexual rehabi-
litation hinders the ability of health professionals to
provide evidence-based care and highlights the need
to develop a more comprehensive sexual rehabilitation
intervention for stroke survivors and their partners. The
aim of the current research was to prioritize content
areas and approaches to sexual rehabilitation from the
perspective of stroke survivors, their partners, stroke
rehabilitation clinicians and researchers.
METHODS
Study design
Recommendations outlined in the guidance on conducting and
reporting DELPHI studies (CREDES) were followed (19). A
modified Delphi methodology (20) was used to elicit and prio-
ritize content for inclusion in post-stroke sexual rehabilitation,
methods and timing of intervention delivery, and disciplines that
should be involved. Delphi methods identify and use diverse
groups of experts and a systematic approach to ascertain prio-
rities, and achieve consensus on these priorities with relevant
stakeholders (21, 22). Typically, Delphi methods are used where
there is a knowledge gap. There is lack of consensus about the
number of rounds of data collection needed for Delphi studies,
but recognition that multiple rounds can result in respondent
fatigue and increase attrition rates (20). We chose to complete a
2-round approach, balancing the need to retain key elements of
the Delphi process without overburdening participants.
There is a dearth of evidence supporting provision of sexual
rehabilitation services following stroke, particularly in relation
to user-driven content. Contemporary implementation science
increasingly recommends involving knowledge users (clinicians,
managers, policymakers, patients/families and others) in the
early design and development of interventions, for a faster and
larger impact (23). Delphi methodology enabled stroke survivors,
their partners, rehabilitation clinicians and researchers to contri-
bute to the development of sexual rehabilitation interventions.
Participants
Four separate groups of stakeholders were targeted during recru-
itment: stroke survivors; their partners; rehabilitation clinicians;
and researchers working in the fields of sexuality, disability
and neuro-rehabilitation. Ethical approval for the study was
granted by the research ethics committee at the University of
Sydney (2017/079). All participants were provided with writ-
ten information and study aims and invited to participate in 2
online surveys.
Stroke survivors and their partners. Participants were recruited
through consumer organizations that represent stroke survivors
in Australia, and through our own professional networks. Di-
verse representation was sought, including people living in rural
and urban settings and with a variety of sexual orientations.
Potential participants were eligible if they met the following
criteria: (i) had received, or were a current or former partner of
a stroke survivor who had received stroke rehabilitation servi-
ces in Australia; (ii) were willing and able to participate in an
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online survey regarding sexuality and stroke (with or without
communication support provided by a speech pathologist); and
(iii) were able to communicate in English (with or without com-
munication support provided by a speech pathologist).
Stroke survivors with self-reported communication difficul-
ties (aphasia, apraxia, dysarthria, cognitive-communication
disorder) were specifically targeted for inclusion in the study.
Participants either indicated their interest by email or through
referring family and clinicians. Participants with self-reported
communication difficulties were offered an aphasia-friendly
(24) participant information sheet, and either a phone call or in-
person discussion about the study. Our aim in providing support
was for people with self-reported communication difficulties to
understand the consent process and written survey as much as
possible. Where required, communication was facilitated with
Principles of Supported Conversation for Adults with Aphasia
(SCA TM ) (25) by an experienced speech pathologist (EP) with
training in SCA TM . To be eligible for inclusion, participants
needed to accurately answer 4 yes/no questions about the study,
based on information provided by the speech pathologist. If they
consented, participants were then offered the opportunity to
complete an unmodified online form (with or without support),
or a face-to-face session with a speech pathologist using an
aphasia-friendly version of the Delphi survey, accompanied by
SCA TM techniques. Based on the initial meeting, the speech pat-
hologist rated participants’ communication activity limitation,
using the Australian Therapy Outcome Measures (AusTOMs)
Activity Limitation Scale (26) most pertinent to their reported
communication difficulties (typically language).
Rehabilitation clinicians. Rehabilitation clinicians were
contacted by email via rehabilitation networks. Clinicians
were eligible to participate if they provided clinical care to
stroke survivors. The importance of having respondents from
as many rehabilitation disciplines as possible was highlighted.
Additional emails were sent to discipline-specific networks to
recruit participants from speech pathology, sexology and sexual
counselling backgrounds.
Researchers. Three electronic databases (MEDLINE, CINAHL,
PsycINFO) were searched to identify authors who had published
peer-reviewed articles about sexual rehabilitation following
acquired physical disability. We contacted theses authors by
e-mail and invited participation in the study.
Data collection
All surveys are available from the authors. Demographic
data were collected to describe participants. In the first round
information about age, gender, cultural background, sexual
orientation, religious beliefs, stakeholder group, number of years
post-stroke and professional background was sought.
Round 1. The first round sought participants’ views on the de-
sired content of a post-stroke sexual rehabilitation programme,
timing of the programme, preferred method of programme deli-
very and involvement of specific disciplines in the programme.
Participants were initially presented with a short statement
describing potential content areas (n = 47) grouped into 6 catego-
ries: (i) general issues relating to sexuality and disability (n = 4);
(ii) communication issues (n = 7); (iii) stroke-related cognitive
and behavioural changes impacting on sexuality (n = 5); (iv)
stroke-related psychological changes impacting on sexuality
(n = 8); (v) stroke-related changes in physical function impac-
ting upon sexuality (n = 9); and (vi) changes in sexual function
(n =14). Potential content was generated from 3 sources. First,
J Rehabil Med 51, 2019