Sexuality and Disability (2020) 38:57–83

https://doi.org/10.1007/s11195-020-09616-5

ORIGINAL PAPER

A Critical Appraisal of Sexuality and Relationships Programs

for People with Acquired Brain Injury

Amie O’Shea1   · Patsie Frawley1 · James William Leahy1 · Huong Dieu Nguyen1

Published online: 27 January 2020

© Springer Science+Business Media, LLC, part of Springer Nature 2020

Abstract
This literature review presents a critical appraisal of the dominant approaches toward the
sexuality and relationships of people with acquired brain injury. In particular, we sought to
identify and review existing programs focusing on sexuality and relationships which use
an educational and/or peer–peer approach. A systematic and comprehensive search of the
EBSCOHOST database was conducted within an unlimited time-frame to yield the highest
number of relevant results possible, along with hand-searching of key journals and data-
bases. Reports, papers and webpages, documents commonly referred to as ‘grey literature’
that are not published in peer-reviewed journals, were also hand searched as a part of this
review. The database search yielded 862 results, 14 of which were found to be relevant to
our research interests. All of the sexuality education programs identified in this review were
experienced positively by participants, families, caregivers, and professionals working with
people with acquired brain injury. No peer–peer sexuality and relationships programs were
identified. However, we found strong support for the use of peer–peer approaches in other
programs for people with acquired brain injury. This literature review provides strong sup-
port for the development peer–peer sexuality and relationships programs for people with
acquired brain injury. However, any future programs would have to overcome the limita-
tions of existing sexuality and relationships programs.

Keywords  Acquired brain injury · Sexuality · Peer-engagement · Education · Australia

Introduction

Definition

A number of terms have been used to refer to and describe the range of disabilities that
occur as a consequence of an injury to the brain, including brain damage, brain disorder,
Traumatic Brain Injury and Acquired Brain Injury. The Australian Institute of Health and
Welfare defines Acquired Brain Injury as:

* Amie O’Shea
amie.oshea@deakin.edu.au
1
School of Health and Social Development, Faculty of Health, Deakin University, Geelong,
Australia

13
Vol.:(0123456789)
 58 Sexuality and Disability (2020) 38:57–83

“multiple disabilities arising from damage to the brain acquired after birth. It results
in deterioration in cognitive, physical, emotional or independent functioning. It can
be as a result of accidents, stroke, brain tumours, infection, poisoning, lack of oxy-
gen, degenerative neurological disease etc.” [1, p. 2].
While acknowledging that the terminology is not yet standardised, this paper will use the
term Acquired Brain Injury (ABI) for consistency.

Demography

ABI is a leading cause of disability, with an estimated 338,700 Australians currently living
with ABI [2]. Higher rates of ABI are observed among a number of marginalized groups.
Indigenous Australians, for example, are 1.7 times more likely to have an ABI than non-
Indigenous Australians, which is likely due to the fact that Indigenous Australians are more
likely to experience physical violence [3]. Family violence is a common cause of ABI,
with around 40% of family violence victims who are admitted to hospitals being diagnosed
with a brain injury of some kind. It is likely, however, that the connection between fam-
ily violence and ABI is much stronger. Mild forms of brain injury often go undiagnosed
in hospitals, and many more victims of violence are not admitted to hospital at all [4].
These populations are not likely to be captured in current statistics on the incidence and
prevalence of ABI. People with ABI are also substantially overrepresented in the Victorian
prison population—42% of male prisoners and 33% of female prisoners in the Victorian
penal system have an ABI [5, p. 22]. These findings have prompted calls for better services
for prisoners during incarceration and release.
It must be recognised that the consequences of ABI are complex, and affect individu-
als differently. People with ABI commonly experience cognitive difficulties, including
“poor memory and concentration, reduced ability to plan and problem solve and inflex-
ible thinking”, as well as psychosocial and emotional problems, “such as depression, emo-
tional instability, irritability, and impulsive and inappropriate behavior” [1, p. 3]. Physical
difficulties associated with ABI may include “headaches, fatigue, seizures, poor balance,
visual and hearing disturbances, chronic pain and paralysis” [1, p. 3]. The diversity and
complexity of ABI therefore presents challenges and opportunities for disability support
services and the general service system [1, p. 3]. Furthermore, the temporal dimension of
ABI distinguishes it from other physical and intellectual disabilities, as well as its intersec-
tions with other identities around sexuality, gender, location and culture. Being an acquired
brain injury means that there exists for the person with disability a narrative of before and
after the injuring event/s, which may be associated with psychological trauma.

Sexuality and Rights

Until recently, sexuality has been treated as a peripheral subject within disability studies,
and remains under-addressed outside of disability studies, including in policy and program
development [6, p. 114]. Outside disability studies, people with disabilities are frequently,
and paradoxically, portrayed as either hypersexual, aggressive, or asexual, or as helpless
victims in need of protection from sexual violence and exploitation [6, p. 116]. Some
scholars within disability studies have sought to critique the sexual ableism which often
underlies these stereotypical portrayals of disabled sexuality, particularly within medical
and legal discourse [7].

13
Sexuality and Disability (2020) 38:57–83 59

Sexual ableism refers to the matrix of medical, legal, and socio-political norms that
imbue sexuality “with determinations of qualifications to be sexual based on criteria of
ability, intellect, morality, physicality, appearance, age, race, social acceptability, and gen-
der conformity” [7, p. 3]. Ableist assumptions are often used to justify the continuing sex-
ual repression, denial of sexual autonomy, and legal and institutional restrictions to sexual
expression faced by many people with disabilities [8, p. 136]. To counter this trend, recent
scholarship within disability studies has attempted to challenge the notion that sexuality
and ability are inextricably intertwined and to highlight some of the socio-political and cul-
tural barriers faced by people with disability. For example, Tom Shakespeare writes that:
“the problem of disability and sexuality is not an inevitable outcome of our bodily
differences…It is not because we cannot walk, or we cannot see, or because we lack
feeling in this or that part of the body that disabled people have sexual problems…
The barriers to the sexual expression of disabled people are primarily to do with the
society in which we live, not the bodies with which we are endowed” [9, p. 161].
Barriers to sexuality for people with disability arise not solely from an embodied impair-
ment, but rather from a confluence of its social effects, such as a lack of sex education, nar-
row social conceptions of sex and sexuality, social disadvantage and isolation, institutional-
ization, economic disadvantage, and a lack of self-esteem or self-confidence [9, p. 161, 10,
p. 260]. Locating the barriers to sexual expression in the social rather than the physical has
enabled a shift away from the highly medicalized discourse of impairment, abnormality,
deviance and rehabilitation that surrounds disabled sexuality toward a discourse of rights,
justice, inclusion, and equality.
Both the United Nations Convention on the Rights of Persons with Disability [11] and
the World Health Organization’s Global Disability Action Plan (2014–2021) [12] express
the rights of people with disabilities to live lives free from discrimination, stigmatiza-
tion, disrespect, violence and abuse, as well as the right to autonomy, inclusion, and equal
access in health and education [11–13]. Several of these rights relate directly to sexuality,
although without enshrining sexuality itself as a right [14, p. 9]. Nonetheless, it is likely
that claiming sexual rights for people with disabilities will be a key strategy for disability
advocates going forward [6, p. 125, 8, p. 154].

Existing Literature and the Need for This Review

There is a dearth of research in the area of sexuality and relationships for people with ABI.
Moreno et al. [15] suggest that adoption of a person-centered approach in development of
practice guidelines for healthcare and rehabilitation staff, which considers individual traits
and values, and can improve the overall experience and satisfaction of patients in such set-
tings. Additionally, provision of staff LGTBIQA+ awareness training to promote an inclu-
sive approach to gender and sexual identities is recommended [16].
Much programmatic work in response to issues of sexuality for people with ABI
tends to adopt a medical model of disability and often sidelines the perspectives and
concerns of people with disabilities. For example, the Massachusetts State-wide Head
Injury Program (SHIP) in the US was established to provide a “comprehensive and
coordinated program of sexuality and related staff training and consumer education”,
operating in a distinctly rehabilitative setting [17, p. 22]. However, this program—
and other programs we identified as a part of this review—largely fail to focus on the

13
 60 Sexuality and Disability (2020) 38:57–83

inclusion of people with ABI themselves in the development of programs, despite rec-
ognition of their learning capacity and the importance of acute cognitive and neuro-
behavioral intervention [18–21].
Much of the current research is based in hospital and rehabilitative contexts, with a dis-
tinct lack of community-based programs [18, 22, 23]. Within rehabilitative contexts, the
therapeutic focus is largely placed on physical strength and functioning, including sexual
functioning, while sexuality and relationships feature only incidentally or within a deficit-
based approach to sexual behavior [10, 24–26]. We note the positive example provided by
the American Commission on Accreditation of Rehabilitation Facilities (CARF) accredi-
tation which includes formal requirements for programs and rehabilitation to address
meaningful relationships and sexuality related concerns when certifying as a specialized
brain injury program [27]. As opposed to sexual functioning, of which majority of previ-
ous research has focused on the heterosexual male community, sexuality is a complex and
multi-faceted phenomenon that is made up of many elements, and is not strictly limited to
heteronormative sexual practices [15, 26, 28].
Research on sexual functioning after an ABI widely accepts that sex drive, and geni-
tal functioning can involve a period of adjustment [10, 26]. Studies now suggest that up
to 75% of people with ABI in rehabilitation experience sexual problems, including feel-
ing comfortable in their sexual expression and perceived satisfaction of sexual experiences
[29]. While there has been a contribution to efforts to measure sexual function and sexual
satisfaction taking a multi-factorial approach, previous to the development of the Brain
Injury Questionnaire of Sexuality developed by Stolwyk and colleagues, the reliability of
scoping the extent of changes in sexuality following an ABI incident has been poor [16].
We contend that there is a need to identify and analyze the conceptions of sexuality which
operate within existing sexuality and relationships programs for people with ABI, and to
develop programs which align more closely with diverse and multiple lived experiences of
sexuality and relationships.
Our key objectives in conducting this review were to identify and consolidate existing
research; to critically appraise how the sexualities and relationships of people with ABI
have been addressed in research and in practice; and to offer a rights-based perspective on
the kinds of approaches that might better promote the sexual lives and relationships of peo-
ple with ABI. Recent literature has highlighted the need for more holistic understandings
of and responses to sexuality education and support for people with ABI [30–35].
There have been slow but significant gains in these areas for people with intellectual
disabilities. Research and practice is beginning to reflect a rights-based approach, wherein
people with disabilities themselves are placed at the centre of education and program
development and their lived experiences are central to informing new approaches to advo-
cacy and policy change [36–38]. Within this paradigm, peer education, co-production, and
co-design are utilized to empower people with disabilities, who are regarded as authorita-
tive and credible sources of information and knowledge, capable of educating and support-
ing others [36].
This approach challenges the traditional processes of knowledge production and pro-
gram development and has the potential to radically transform the lives of people with dis-
abilities. As the search terms demonstrate, to broaden the scope of this review we also
explored peer–peer approaches in areas which did not focus on relationships or sexuality
(though these may be presumed content across many areas). While we found a growing
use of peer–peer approaches in other areas, such as mental health services [39], the extent
to which such approaches have been incorporated into sexuality programs for people with
ABI remains unclear.

13
Sexuality and Disability (2020) 38:57–83 61

Methodology

This integrative literature review focused on programs related to sexuality and relation-
ships that are available to people with ABI aged eighteen and over. The review included
a specific focus on intersections: gender, LGBTIQ people with ABI, those from culturally
and linguistically diverse backgrounds, and Indigenous Australians. We sought to address
the following questions:

• What does the literature say about the experiences of people with ABI in regards to
sexuality and relationships?
• What evidence is there of peer–peer approaches in community-based programs for peo-
ple with ABI?
• What evidence is there of inclusive research methodologies and/or co-design with peo-
ple with ABI?
• What sort of efforts have been made to support the sexual rights of people with ABI?

In addressing these questions, we sought to discover:

• The ways in which ABI has been conceptualized and responses have been framed
• The place that sexuality occupies in rehabilitative and support programs for people
with ABI
• The ways in which peer–peer approaches (including peer support, peer mentoring, and
peer education) has been implemented for people with ABI in all areas
• The specific research considerations that might be involved when working with people
with ABI in co-design and co-production.

What we refer to as ‘peer–peer approaches’ encompasses a broad range of educational and/

or support methods, including peer education, peer support, mentoring, and other peer
group interventions. We acknowledge that there are important methodological and theoreti-
cal differences between these approaches. However, for the purposes of this review we are
interested in all approaches where the intended users of a particular program or interven-
tion who share an identity are actively involved in the design or delivery of that program,
rather than being positioned as the passive recipients of a service.
A systematic and comprehensive database search encompassed Ovid, Proquest, Pub-
Med, Scopus and EBSCOHOST (Academic Search Complete, CINAHL, Health Source—
Consumer edition, Health Source—Nursing/Academic edition, Life with Full Text,
Medline Complete, Psychology and Behavioral Sciences Collection), using an unlimited
time-frame to yield the highest number of relevant results possible. Hand searching of
the Journal of Head & Traumatic Injury, internet search engine Google and results found
through Google Scholar searches were also used.
The following terms were employed in the search: (“Brain Injur*” OR “TBI” OR “ABI”
OR “Traumatic Brain Injur*” OR “Acquired Brain Injur*” OR “Head Injur*” OR “Stroke”
OR “Cognitive Disability” OR “Brain Tumor”) AND “Sex*” AND “Education” AND
Relationship AND ((Indigenous OR Aboriginal) OR (ATSI OR CALD) OR LGBT) AND
(“peer” OR mentor OR “self-help” or “support group” OR advocacy) AND “peer edu-
cation” AND “gender” and “violence and abuse” “Evaluat*”. The range of search terms
related to peer–peer approaches were appropriately broad, given our research interests in
all peer-based methodologies.

13
 62 Sexuality and Disability (2020) 38:57–83

Inclusion criteria required that the study meet one or more of the following points: (1)
focused on sexuality and/or relationships in the lives of people with ABI or their support
networks, (2) used a means of peer–peer approach, (3) involved adults over the age of
18, (4) published in English. Studies were excluded if they did not meet these criteria or
reported one or more of the following elements: (1) focused on population aged under 18,
(2) focused on medical responses to physiological sexual functions, (3) published in a lan-
guage other than English.
We have noted above that reports, papers and webpages, documents commonly referred
to as ‘grey literature’ that are not published in peer-reviewed journals, were hand searched
as a part of this review. This included all relevant community-based programs and/or their
evaluations. While community-based research is often considered lower in the hierarchy of
evidence, especially when compared to more ‘scientifically rigorous’ methods (such as ran-
domized controlled trials), this kind of literature “often comes from the grassroots and rep-
resents first-person experiences that may not be represented in more traditional academic
literature” [40, p. 2]. In other words, grey literature can often provide a snapshot of the
kinds of experiences that are not captured in more formal, scientific studies.
For this reason, we considered grey literature to be extremely relevant to our research
concerns, and of equal value to traditional academic literature. Searching techniques
included the keywords listed previously applied to internet searches, to identify resources,
individuals and clinical, practice or academic institutes in the area as well as reviewing the
references and acknowledgements of identified sources and ‘following the chain’ to iden-
tify new sources.

Results

The initial search of Ovid, Proquest, PubMed, Scopus and EBCOHOST databases yielded
862 results. Abstracts and titles were screened and analyzed for their relevance to our
research interests. After analyzing and removing duplicates, only a fourteen relevant stud-
ies in this area were identified. Hand searching of the grey literature identified a limited
number of relevant community-based programs, as well as a number of informal support
groups, such as Facebook groups and workshop presentations, that provide support to peo-
ple with ABI in Australia and internationally. See the Prisma flow chart (Fig. 1) for com-
prehensive reporting [41].
We identified two major categories of literature that were most relevant to our research
interests: (1) sexuality and relationships education  (n = 6); and (2) peer–peer approaches
(n = 8). These two categories include evaluations of the latest programs and initiatives that
are available for people with ABI in Australia and internationally. Our evaluation of these
studies and programs indicates the effectiveness of peer–peer approaches as a part of the
rehabilitative process for people with ABI, as well as the positive experiences of partici-
pants in sexuality education programs, including families, caregivers, and professionals
working with people with ABI. Evaluators of these programs highly recommended the use
of either peer–peer services or sexuality and relationships education for people with ABI
for better rehabilitation outcomes, relationship satisfaction and better quality of life.
Outside of rehabilitative contexts, there is a distinct neglect of sexuality in education pro-
grams and information available to people with ABI [30–35]. Our review of the ‘grey’ lit-
erature identified an additional small number of community-based, educational programs for
people with ABI with a focus on sexuality. Support groups developed by the Melbourne City

13
Sexuality and Disability (2020) 38:57–83 63

Records identified through all Records identified through hand

databases: Scopus, Ovid, searching in multiple sources:
Proquest, PubMed and
Idenficaon

Journal of Health and Traumatic Injury,

EBCOHOST Google, and Google scholar
(n=862) (n= 11)

Total potential records identified via

databases and hand searching
(n= 873)
Screening

Title and Abstract Screening Records excluded

(n= 873) (n = 815)

Full text access for eligibility

(n= 58).
Eligibility

Criteria:
(1)Published in English,
(2) focus on sexuality and/or Full text excluded as
relationship and/or peer- not meeting Inclusion
support in people with Criteria (2) and (3)
ABI/TBI at community level (n=35)
(3) over 18 years old
Included

Records included for

quality synthesis (n=
14 articles and n=12
programs)

Fig. 1  Prisma flow-chart for reporting the literature search and selecting results

Mission [42], as well as the LifeMoves Program delivered by BrainLink [43], provide oppor-
tunities for inclusive and peer-led discussions about a wide range of issues [42–45]. How-
ever, there is a need for these programs to be systematically reviewed in order to evaluate their
efficacy. Furthermore, there is a need for programs which explicitly create a space to discuss
issues of sexuality and relationships.
The following information presents these findings in greater detail. Tables 1 and 2 provide
descriptive summaries of the formal, academic publications analyzed as a part of this litera-
ture review including the publication type, research interest, method, participant group, and
findings. Table 1 contains summaries of sexuality and relationship education programs, while
Table 2 focuses on peer support approaches.

13

Table 1  Sexuality and relationship education
References Title Publication type/method Research interest
13
Simpson and Long [47]  An Evaluation of Sexual Research paper/evaluation To evaluate sex educa-
Education and Infor- of educational program tion and informational
mation Resources and (survey) resources developed to
Their Provision to address the sexual health
Adults with Trau- concerns of people with
matic Brain Injury traumatic brain injury
(TBI) and the means
by which agencies have
introduced this clinically
sensitive program initia-
tive
Dombrowski et al. [18] Rehabilitation Treatment of Research article/case study To investigate the efficacy
Sexuality Issues Due to of treatment methods
Acquired Brain Injury for ABI survivors who
experience sexual issues,
and educational meeting
for the ABI survivor and
their family
64
Participant group Conclusions
People with TBI aged The evaluation indicated
16–65 years general satisfaction
with the program. How-
ever, not all modules of
the manual were useful,
and there was also a need
for additional resources
focusing on LGBTQIA+
issues, family reactions to
the sexual concerns of a
people with TBI, the issue
of partners as care givers in
established relationships,
sexual disinhibition, sexu-
ality issues for children and
adolescents with TBI,
sexuality issues in long-
term residential settings,
and the issue of developing
relationships
Three residents of long- The authors concluded that
term residential support the educational component
service with ABI of the treatment program
helps improve sexual
knowledge for people with
ABI and their families and
provides opportunities to
discuss sexual issues with
sex therapists alongside
other clients with similar
issues
Sexuality and Disability (2020) 38:57–83
 Table 1  (continued)
References Title Publication type/method Research interest Participant group Conclusions

Kreutzer et al. [22] A mixed methods evalua- Research paper/mixed
tion of the Brain Injury
Family Intervention
To describe and compare 76 people with ABI and 76
methods evaluation caregivers’ and patients’
perceptions of the inter-
vention’s efficacy
The intervention—with its
caregivers use of education, skill
building and psychologi-
cal support—is effective
in reducing the negative
impacts of ABI on both the
people with the disability
and their family, and was
positively perceived by the
Sexuality and Disability (2020) 38:57–83

overwhelming majority of
clients and caregivers
Backhaus et al. [48] Examination of an Research paper/group inter- To evaluate the efficacy of a Nine participants with ABI High participant satisfaction
intervention to enhance vention evaluation small, group intervention and their partners was recorded. The authors
relationship satisfaction that focused on relation- concluded that the inter-
after brain injury: A ship skills and training vention was successful in
feasibility study based on CBT, DBT, and improving communication
Gottman’s Relationship skills, as well as the overall
Framework quality of the participants’
relationships
Meixner et al. [46] Impact of the Brain Injury Research paper/mixed To demonstrate that a struc- 34 ABI service providers Providers’ knowledge of
Family Intervention methods evaluation tured three-day training brain injury and their abil-
(BIFI) training on reha- module based on BIFI ity to conceptualize treat-
bilitation providers: A protocol would improve ment models for survivors
mixed methods study providers’ knowledge and and their families increased
confidence in working significantly. Qualitative
with survivors and their data points also indicates
families greater understanding of
family dynamics
65

13
 Table 1  (continued)
66

References Title Publication type/method Research interest Participant group Conclusions

Hamam et al. [49] Sex after stroke: a content Research paper/literature To identify, describe, N/A Educational materials on sex

13
analysis of printable search and analyze printable after stroke may be helpful
educational materials educational materials for health professionals,
available online on sexual concerns that stroke survivors, and their
are available online and partners, yet some mes-
easily shared with stroke sages appear to discourage
survivors recovery
Sexuality and Disability (2020) 38:57–83
 Table 2  Peer–peer approaches
References Title Publication type/method Research interest Participant group Conclusions

Hanks et al. [50] Randomized Controlled Research paper/Rand- To examine the efficacy
Trial of peer mentoring omized Controlled Trial of a peer-mentoring
for individuals with Trau- (RCT) program for people with
matic Brain Injury and traumatic brain injury
their significant others (TBI) and their signifi-
cant others, and to deter-
mine the relationship of
this mentoring program
to 3 main outcomes: (1)
People with TBI (n = 96) Mentoring can be an effec-
and their significant oth-
ers/caregivers (n = 62)
tive way to benefit mood
and healthy coping after
TBI, and it can help to
prevent maladaptive behav-
iors, such as substance
abuse and behavioral
issues, in the living situ-
ation
Sexuality and Disability (2020) 38:57–83

emotional wellbeing;
(2) post-TBI quality of
life; and (3) community
integration
Backhaus et al. [48] Comparison of a cognitive Research paper/RCT​ To compare the efficacy of Subjects (n = 38), includ-
behavioral coping skills 2 group treatments for
group to a peer support people with brain injury
group in a brain injury (BI) and their caregivers
population in promoting perceived
selfefficacy (PSE) and
emotional and neurobe-
havioral functioning
With certain group dynamics
ing 19 with BI and 19 and support, individuals
caregivers, participated in with BI and caregivers
a BI coping skills group may benefit similarly from
or a support group either a support group or
CBT intervention. How-
ever, due to sample limita-
tions, the authors could not
rule out the possibility that
those with more signifi-
cant challenges in PSE or
emotional functions may
show greater benefits with
a CBT group
67

13
 Table 2  (continued)
68

References Title Publication type/method Research interest Participant group Conclusions

13
Struchen et al. [53] Making connections after Research paper/evaluation To describe the develop- Community-dwelling indi- Satisfaction ratings for the
brain injury: Develop- of a pilot program (RCT) ment and implementation
ment and evaluation of a social peer-
of a social mentoring mentoring program for
program for persons with persons with traumatic
traumatic brain injury brain injury (TBI) and to
explore whether this pro-
gram yielded increased
social functioning
outcomes compared with
wait-list (WL) controls
Bellon et al. [55] Information connection and Research paper/evaluation To identify the experiences Fifty-five members (20
giving back: peer support of peer support network and outcomes of partici-
outcomes for families pation in Families4Fami-
following acquired brain lies Inc., a peer support
injury in South Australia network for families
following acquired brain
injury (ABI) in South
Australia
viduals with TBI (n = 30) SPM program were uni-
formly high and selected
positive findings encourage
further investigation of
social mentoring as an
intervention to effect
improvements in social
integration. Small sample
size and reduced “dosage”
of mentor interactions were
limitations of this pilot
study
Peer support programs can
people with ABI; 35 enable families to share
caregivers) experiences, knowledge,
positive coping strate-
gies, understanding of
systems and develop new
social networks that last
beyond the programme.
The continuing need for
extended regional access is
highlighted, with follow-up
and referral to counselling
and other services also
critical to ensure members
are appropriately supported
through difficult personal
experiences
Sexuality and Disability (2020) 38:57–83
 Table 2  (continued)
References Title Publication type/method Research interest Participant group Conclusions

Fleming et al. [54] Evaluation of an outpatient Research paper/evaluation/ To evaluate the effective- Outpatients recruited from The Environment-focused
peer group intervention mixed methods cohort ness of an interven- a day hospital setting intervention was useful
for people with acquired study tion based on the ICF attached to a Brain Injury in improving patient
brain injury based on ‘Environment’ dimension Rehabilitation Unit outcomes in terms of better
the ICF ‘Environment’ for enhancing the well- (BIRU) self-reported community
dimension being and psychosocial integration
outcomes of patients with
acquired brain injury in
an outpatient (day hospi-
Sexuality and Disability (2020) 38:57–83

Turner-Stokes et al. [51] Multi-disciplinary reha- Research paper/Cochrane
bilitation for acquired
brain injury in adults of
working age
Morris et al. [52] A systematic review of peer Research paper/systematic
mentoring interventions
for people with traumatic
brain injury
tal) setting
To assess the effects of N/A Strong evidence supports
systematic review of multi-disciplinary reha- the provision of cogni-
RCTs bilitation following ABI tive rehabilitation in a
in adults 16–65 years therapeutic’milieu’, that is,
of age an environment in which
patients receive predomi-
nantly group-based reha-
bilitation alongside a peer
group of others who are
facing similar challenges
This systematic review N/A There is limited evidence for
review sought evidence concern- the effectiveness of peer
ing the effectiveness mentoring after traumatic
of peer mentoring for brain injury. The available
people with traumatic evidence comes from
brain injury small-scale studies, of
variable quality, without
detailed information on the
content of sessions or the
‘active ingredient’ of the
interventions
69

13
 Table 2  (continued)
70

References Title Publication type/method Research interest Participant group Conclusions

Hibbard et al. [56] Peer support in the com- Research Paper/Commu- To evaluate the impact Twenty individuals who Preliminary data suggests

13
munity: Initial findings nity Program Evaluation of a community-based had participated in the that peer support is a
of a mentoring program peer support program peer support program (11 promising approach to
for individuals with Trau- for individuals and their individuals with TBI and enhancing coping for both
matic Brain Injury and family members follow- 9 family members) individuals and their fam-
their families ing traumatic brain injury ily members after TBI
(TBI)
Sexuality and Disability (2020) 38:57–83
Sexuality and Disability (2020) 38:57–83 71

Sexuality and Relationship Education

This literature review identified a total of five academic studies that investigated the experi-
ences of participants in sexuality and/or relationship educational programs [18, 22, 23, 46,
47], and one further study that reported on the quality of information provided within such
programs [48]. The studies included a case study of people with ABI in a long-term reha-
bilitation support program [18], one content analysis of sex education materials available
online [49], and four evaluations of the following programs: (1) the You and Me Program
[47]; (2) the Brain Injury Family Intervention program [22, 46]; and (3) the Couple CARE
intervention [23].
The majority of these studies reported positive experiences and high levels of satisfac-
tion among participants, professionals, ABI agencies, caregivers, and family in relation to
these programs [18, 22, 23, 46, 47]. Simpson and Long [41] found that the content of edu-
cational materials available to people with ABI that relates to sexuality and/or relationships
is, generally speaking, useful and engaging. However, it was also acknowledged that there
is a need for more appropriate resources that focus on LGBTQIA+ experiences, family
reactions to the sexual concerns of a person with ABI, the issue of partners as care givers
in established relationships, sexual disinhibition, sexuality issues for children and adoles-
cents with TBI, sexuality issues in long-term residential settings, and the issue of develop-
ing relationships [47]. Dombrowski et al. [18] also identified the need for more culturally
sensitive information and resources relating to sexuality.
Another finding that was replicated across a number of studies was that sexuality edu-
cation in general may help to increase awareness, provide useful information in regard to
sexual issues, help in establishing respectful and appropriate relationships, and contribute
to the prevention of sexual abuse [18, 47]. Relationship education programs were found
to support the improvement of communication and coping skills for participants, thereby
improving overall relationship quality and satisfaction between people with ABI and their
partners [22, 23]. Both Simpson and Long [47] and Meixner et  al. [46] highlighted the
importance of educational programs for increasing the understanding and competency of
brain injury professionals and service providers in dealing with matters of sexuality and
relationships. In educational settings, the knowledge and experiences of the facilitators, as
well as the similarity of experiences and issues among participants, were found to have an
influence on the level of satisfaction reported [23].

Peer–Peer Approaches

This review identified a total of eight studies that examined the efficacy of peer–peer
approaches to sexuality and relationships for people with ABI. Of these studies, two were
randomized controlled trials [48, 50], two were systematic reviews [51, 52], and four were
evaluations of either programs, clinical trials, or case studies [53–56]. All of the studies
strongly recommended the use of peer–peer approaches in community interventions. As
Struchen et al. [53] identified, mutual sharing with peer mentors who have similar experi-
ences of the challenges and stresses of living with ABI is central to the success of peer sup-
port approaches in this area.
Peer–peer programs were found to be experienced positively by participants in a num-
ber of studies [50, 54, 56]. Improvements in self-efficacy and self-confidence as a result

13
 72 Sexuality and Disability (2020) 38:57–83

of peer–peer interventions, as well as improvements in self-reported life satisfaction, were

reported in several studies [50, 52, 54–56]. Peer–peer approaches were also found to effec-
tively increase knowledge, awareness, and service engagement [53–55]. For these reasons,
a number of authors concluded that peer–peer approaches can be an effective means of
providing support in the area of sexuality and relationships to people with ABI [53–55].
However, there are a number of ways in which peer–peer approaches could be improved.
Most noticeably, the extent to which peer–peer programs contributes to greater com-
munity integration is unclear [50, 52, 53]. Factors such as location, transport, budget
limitations, and relationship constraints need to be carefully considered when designing
peer–peer programs [52, 53, 56]. The resilience of any given peer–peer program was found
to depend upon the frequency and quality of staff training modules [52, 55, 56]. Further-
more, Bellon et al. [55] and Hanks et al. [50] suggested that the monitoring of distress in
participants, as well as caregivers and family members, needs to be better addressed in
such programs. Nonetheless, the importance of peer–peer approaches and their benefit to
people with ABI, both in rehabilitation and community-based programs, is clear.

Practice

Our hand search of the ‘grey literature’ via internet search engines identified a total of nine
programs and/or initiatives that have a focus on sexuality and relationship programs, and
an additional three programs with a peer–peer approach that focus on a variety of issues.
These programs and/or initiatives were found in Australia (one educational program and
three peer support services) [42, 43, 47, 57], the United States (five programs and a support
network [17, 23–25, 58, 59], Canada (a support network based on programs found in Aus-
tralia and the US) [24, 58], and the UK (two educational resources) [60, 61].
These results suggest that there is growing support for sexuality and relationship educa-
tion, as well as peer–peer approaches, in the developed world as a way of promoting the
right to sexuality and reproductive health for people with ABI. In particular, the Compass
program by Melbourne City Mission [42], and the LifeMoves program run by Brain Link
[43], provide particularly good examples of approaches to service provision that place peo-
ple with ABI at the centre of program development and facilitation. However, unlike these
community-based programs, training manuals for clinical practitioners related to sex, sexu-
ality and relationships appear to focus more narrowly on the clinical implications of ABI
for sexual functioning [17].
The programs and initiatives by country are presented in the tables below. Table 3 pro-
vides a descriptive summary of the sexuality and relationships programs available to peo-
ple with ABI worldwide.
Hand searches of grey literature identified several presentations by academic and
research staff which focus on sexuality and relationships for people with ABI. Most of the
presentations were used as training modules for health professionals [62–64], while only
one presentation appears to have been written with people with ABI as the target audience
[65] This grey literature presents a clearer picture of the kinds of approaches to the sexual-
ity of people with ABI that exist in the field, as well as identifying some important authors
in this area. Table 4 provides a descriptive summary of these presentations.

13
 Table 3  Programs, initiatives and training manuals
Country Program
Australia You and Me: An Educational
program about sex and sexual-
ity after a traumatic brain
injury [47]
United States The Manual of Policies and Pro-
cedures of the SHIP Sexuality
Education Program [17]
United States Sexual Functioning and Satisfac- People with ABI and their
tion after Traumatic Injury: An sexual partners
Educational Manual [25]
United States/Canada Sexuality After Traumatic Brain
Injury [24]
Provides advice on how to USA: Model Systems Knowl-
improve sexual functioning edge Translation Centre
after ABI, as well as advice on Canada: Ontario Brain Injury
safe sex Association
13
Target group
Men and Women who have sus-
tained a traumatic brain injury
after the age of 16 years
Health care professionals
People with ABI
Content Facilitators/authors
15 educational modules provid- Multi-disciplinary staff, experi-
ing comprehensive coverage of enced in working with people
sexuality-related issues faced with ABI
by people with traumatic brain
injury
To provide comprehensive Massachusetts Rehabilitation
training and education to staff Commission
and consumers to confront
the sexuality-related issues of
Sexuality and Disability (2020) 38:57–83
people with ABI and their fam-
ily members
An information sheet that Baylor College of Medicine
provided essential information
on sexuality-related issues for
people with ABI. The focus is
primarily on the clinical/physi-
cal implications of ABI for
sexual functioning
An information sheet that
outlines how ABI can affect
sexual functioning and what
causes change in sexual func-
tioning after ABI.
73
 Table 3  (continued)
74

Country Program Target group Content Facilitators/authors

13
United States/Canada/Australia Couples’ Relationships After
Traumatic Brain Injury [58]
United States Brain Injury Family Interven-
tion [59]
United Kingdom Sex and Sexuality after Brain
Injury [60]
United Kingdom BIRT Guide to Living [61]
People with ABI, their partners,
and caregivers
Patients with ABI, their families
and caregivers
People with ABI and their
sexual partner
People with ABI, their families,
and professionals
To provide essential information United States: Model Systems
and tips in regard to couples’ Knowledge Translation Centre
relationships after ABI. Focus Canada: Ontario Brain Injury
is on communication, physical Association Australia: Brain
intimacy, sexual relationships, Injury
and strategies to improve
relationships after ABI
Providing patients, families and Virginia Commonwealth Univer-
caregivers with information sity—Family Support Research.
about common symptoms and Funded by the National Institute
challenges after brain injury, on Disability and Rehabilitation
and strategies to cope with Research (NIDRR)
associated challenges
To provide comprehensive Headway UK—The Brain Injury
and essential information for Association
people with ABI, including
sex education, professional
support, medical treatment,
alternative sex services and
legal advice
A comprehensive and easy to The Disabilities Trust UK
use publication for people with
brain injury, their families, car-
ers and professionals working
with them. A chapter of this
guide is dedicated to personal
relationships and sex
Sexuality and Disability (2020) 38:57–83
 Table 3  (continued)
Country Program Target group Content Facilitators/authors

United States Couples CARE (Caring and
Relating with Empathy after
Brain Injury)(ongoing) [48]
Australia Families for Families (ongoing)
[57]
People with ABI and their A six-week, small group inter- Rehabilitation Hospital of Indiana
partners vention that incorporates ele-
ments of CBT, DBT, and Gott-
man’s framework. The focus is
primarily on couples building
better relationship skills
Adults with ABI Offers a wide range of services, A family-based, peer support
including social and rec- program run with the support
reational activities, regional of Flinders University Re-entry
Sexuality and Disability (2020) 38:57–83

support groups, education and Program

information sessions, online
group discussions, and over-
the-phone support from people
who have a lived experience
of ABI
Australia LifeMoves by BrainLink (ongo- People with ABI An 8-week peer support program Brainlink—facilitated by volun-
ing) [43] for people with ABI and/or teers with a lived experience
degenerative brain conditions of ABI
focusing on a range of issues,
from physical challenges to
financial and emotional issues
Australia Compass (ongoing) [42] People with ABI A peer-support network for Melbourne City Mission
people with ABI focusing on
socialisation, relationships,
skill-building, and more
75

13
 76

13
Table 4  Presentations available online
References Organization Topic Main information Audience

Carter [65] Spaulding Rehabilitation Network Marriage After ABI: Putting the Relationship Identifies stressors caused by ABI, dis- Health professionals
Back Together tinguishes between pre- and post-injury
relationship problems, and provides strate-
gies for helping couples repair relationships
following ABI
Mecklenburg [62] N/A Intimacy after a TBI Intimacy, sex, and sexuality, including infor- People with ABI
mation and strategies to deal with problems
while promoting safe sex
Goldin [63] JFK-Johnson Rehabilitation Institute Intimacy, Sexuality and Reproductive Health Focuses on the effects of ABI on reproductive Health professionals
After TBI health. Analysis of some of the biopsy-
chosocial factors related to changes in inti-
macy, sexuality, and reproductive health in
people with ABI. Develop an understanding
of the biopsychosocial factors related to
changes/difficulties in intimacy, sexuality,
and reproductive health in individuals with
traumatic brain injury
McLaughlin [64] N/A Relationships and Sexuality after Brain Injury Discusses impacts of brain injury on sexual- Health professionals
ity and relationships—particularly clinical
implications—and reviews interventions,
suggestions and ethical considerations
Sexuality and Disability (2020) 38:57–83
Sexuality and Disability (2020) 38:57–83 77

Discussion

To our knowledge, this is the first literature review to explore sexuality and relationship
programs for people with ABI which use an educational and/or peer–peer approach.
Although our literature search has identified a number of programs that provide educa-
tion and support related to sexuality and relationships, none have specifically adopted a
peer–peer approach.

Need for Specific Programs and Services

People with ABI often face new challenges related to sex and sexuality—due not only to
problems with physical sexual functioning, but also emotional, social, and cultural deter-
minants—that place strains on their relationships and undermine their right to sexual
autonomy. Arango-Lasparilla et  al. [66] emphasised the importance of including sexual
education programs in the rehabilitative process, a view widely supported by people with
ABI and their families [28].
However, sexual education and support is still not regarded as a priority in the rehabili-
tative process, despite evidence which points to the efficacy of education and support pro-
grams, as well as sex therapy, for people with ABI [24]. Most service providers still do not
have specific protocols or guidelines for dealing with issues related to sexuality for persons
with ABI [66]. While this study has identified a small number of programs which focus on
sexuality and relationships for people with ABI, there is certainly a need for rehabilitation
and ongoing support services in this area to be developed and improved upon based on
emerging research.

Evaluation of Existing Approaches

The results of this literature review indicate that sexuality remains under-addressed reha-
bilitation research and the peer-reviewed literature, especially in the areas of education,
access to information, and community services. While a small number of programs and
services providing sexuality and relationships education to people with ABI are available,
many need to be evaluated in order to determine their efficacy and benefit to participants.
Our literature review found only four programs related to sexuality and relationships for
people with ABI that have been adequately evaluated: (1) You and Me Sexuality Education
Program [47]; (2) Couple CARE [23]; (3) Families4Families [55]; and (4) Brain Injury
Family Intervention [22, 46]. Overall, these programs were positively received by partici-
pants and their families, as well as caregivers and other healthcare professionals. The other
programs listed in Table  3 remain ‘grey’ in that no formal, academic evaluation of their
efficacy has yet been conducted.
It is unclear whether the existing support network is effectively meeting the needs and
demands of the ABI community. The fact that this literature review failed to identify any
current programs or initiatives that provide education or support specifically for people
with ABI who identify as LGBTQIA+, culturally and linguistically diverse, or Indigenous
suggests that more targeted services are needed in this area. It is possible that these pro-
grams are promoting narrow, heteronormative, and culturally insensitive conceptions sexu-
ality, and are thereby failing to meet the needs of a large section of the ABI community.
This criticism also applies to the various kinds of information related to ABI and sexuality
that are publicly available [18, 47].

13
 78 Sexuality and Disability (2020) 38:57–83

A number of the programs identified in the grey literature appear to focus almost exclu-
sively on rehabilitation, sexual problems, and the clinical implications of ABI for sexual
functioning. This indicates that despite the progress made by disability advocates in recent
years, the medical model of disability continues to dominate in areas related to sexual-
ity. More holistic approaches to sexuality, which take the social, cultural, and emotional
dimensions of sexuality into consideration and acknowledge the agency of people with
ABI may be more beneficial and appropriate options for future programs. Such approaches
need not replace the medical model altogether, but could be incorporated into rehabilitative
and ongoing support programs.
Given that a number of studies identified as a part of this review focused on couples and/
or families [20, 22, 23, 46], it is unclear whether single people with ABI are being reached
by existing programs, or whether the importance of sexual autonomy is being adequately
addressed. Further research is needed to determine whether the needs of single people with
ABI are being adequately met by existing support and services networks.

The Benefit of Sexuality and Relationships Programs with a Peer–Peer Approach

The results of this literature review suggest that peer–peer approaches may be effective
and appropriate ways of approaching sexuality and relationships education for people with
ABI in a holistic, inclusive, and empowering manner. Peer–peer approaches are effective
because they (1) result in positive experiences for participants; (2) help to increase self-
efficacy and self-confidence; (3) are an effective means of providing support; (4) have a
positive effect on self-reported quality of life and life satisfaction by improving depressive
symptoms, mood, psychological health, and promoting good coping mechanisms; and (5)
effectively increase knowledge, awareness, service engagement and levels of self-reporting.
These findings are consistent with a number of other studies from the disability stud-
ies field, and provide strong support for the use of peer–peer approaches in the rehabili-
tation process. Mead et  al. [67] have suggested that peer–peer approaches may facilitate
the de-institutionalization and de-medicalisation of services and programs for people with
disability. While clinical approaches to rehabilitation rely upon a hierarchical relation-
ship between expert and patient, Mead suggests that peer support is fundamentally about
“understanding another’s situation emphatically through the shared experience of emo-
tional and psychological pain” [67, p. 135].
This shared experience forms the basis of connection between peers, and contributes to
a supportive environment in which participants are encouraged to be with each other with-
out the constraints of expert/patient relationships [67, p. 135]. Seeking support from peers
with similar lived experiences of disability reduces levels of dependence on professional
support by treating people with disability themselves as living resources of knowledge,
thereby encouraging participants to challenge their socially and culturally constructed
‘patient’ identities [67]. Peer support—or what Mead calls ‘intentional peer support’—is
explicitly concerned with social change and involves connection, transformation of world-
views, co-learning and growing, and movement towards a more desirable situation for
participants [68]. Any sexuality and relationships program that has the empowerment of
people with disability as its aim would therefore benefit greatly from adopting a peer–peer
approach.
Frawley et  al. [37] suggested that peer education approaches are effective in deliver-
ing respectful sexuality and relationships programs for people with intellectual disabilities.
The authors suggested that the success of peer education approaches derives from their

13
Sexuality and Disability (2020) 38:57–83 79

empowerment of the people who are targeted by the program, as these approaches provide
opportunities for historically disenfranchised peoples to speak out, to inspire their peers,
and to share similar experiences with one another [37]. Peer–peer approaches—including
peer education and peer support—recognise the ability and capacity of people with dis-
abilities, thereby promoting their rights to autonomy, social inclusion, and equal access
to health and education. It is likely that the success of peer–peer approaches in delivering
sexuality and relationships programs for people with intellectual disabilities could be repli-
cated in programs specifically for people with ABI.
While this study did identify several other community-based peer–peer programs in a
number of countries, these need to be systematically reviewed and evaluated before any
conclusions can be made about their efficacy. However, their existence does indicate that
the popularity of peer–peer approaches is growing in this area.

Limitations

Given the emphasis on gathering practice knowledge in this literature review, we accept
that practice in smaller, community-based contexts is not documented even in the grey lit-
erature. We accept and acknowledge the initial stimulus to the project as described by the
community based organization which funded it, that there was a significant lack of suit-
able, evaluated and effective resources available for their use.
Further examination and evaluation of practice in these areas would require a large-
scale, empirical study. We recognise that many programs providing support to people with
ABI may be incorporated in broader approaches that focus on a range of issues for peo-
ple with a range of disabilities, and thus would not have been captured in this review. For
example, the South Eastern Centre Against Sexual Assault & Family Violence’s program
Making Rights Reality provides support to people with intellectual disabilities and ABI
who have been sexually assaulted, including access to legal support for victim’s compensa-
tion [69, 70] However, as this program does not focus exclusively on ABI, or include any
reference to brain injury specifically in its title, it did not appear in this literature review.
This may also apply to other, similar programs.

Conclusion

Sexuality and relationships education programs for people with ABI are, generally speak-
ing, positively experienced by participants, their families, health care professionals, ABI
agencies, and caregivers. While this literature review has not identified any sexuality and
relationships programs for people with ABI that incorporate peer–peer approaches, similar
models have been successfully implemented with other groups including people with intel-
lectual disability and in mental health.
All of the studies of peer–peer programs identified as a part of this study strongly rec-
ommended the use of peer support, peer mentoring, or other peer-based approaches in
community interventions for people with ABI. However, any future programs would have
to overcome the limitations of existing sexuality and relationships programs. Specifically,
there is a need for programs which focus more strongly on the individual rather than the
family/couple, as well as LGBTIQA+ content.
More culturally sensitive programs, as well as specific programs for Indigenous peoples,
are also needed. The narrow focus on ‘sexual functioning’ in the grey literature indicates

13
 80 Sexuality and Disability (2020) 38:57–83

the continuing dominance of the ‘medical model’ and deficit-based approaches to sexual
rehabilitation. More holistic, rights-based approaches to sexuality and relationships pro-
grams for people with ABI need to be developed. The use of peer–peer approaches is one
way that this could be achieved.

Compliance with Ethical Standards 

Conflict of interest  The authors declare that they have no conflict of interest.

References
1. Australian Institute of Healrh and Welfare (AIHW): Disability in Australia: acquired brain injury. In.
AIHW, Canberra, ACT (2007)
2. Fortune, N., Wen, X.,: The definition, incidence and prevalence of acquired brain injury in Australia.
In: AIHW (ed.). Canberra (1999)
3. Lakhani, A., Townsend, C., Bishara, J.: Traumatic brain injury amongst indigenous people: a system-
atic review. Brain Inj. 31(13–14), 1718–1730 (2017)
4. Brain Injury Australia (BIA): The Prevalence of Acquired Brain Injury Among Victims and Perpetra-
tors of Family Violence. https​://www.brain​injur​yaust​ralia​.org.au/downl​oad-bias-repor​t-on-austr​alias​
-first​-resea​rch-into-famil​y-viole​nce-and-brain​-injur​y/ (2018). Accessed March 2018
5. Jackson, M., Hardy, G., Persson, P., Holland, S.: Acquire brain injury in the victorian prison system.
In. Corrections Research Paper Series. Department of Justice, Victoria (2011)
6. Schaaf, M.: Negotiating sexuality in the convention on the rights of persons with disabilities. SUR Int.
J. Hum. Rts. 14, 113–131 (2011)
7. Gill, M.: Already Doing It: Intellectual Disability and Sexual Agency, pp. 1–22. University of Minne-
sota Press, Minneapolis (2015)
8. Siebers, T. (ed.): A sexual culture for disabled people. In: Disability Theory, pp. 135–156. University
of Michigan Press, Ann Arbor (2008)
9. Shakespeare, T.: Disabled sexuality: toward rights and recognition. Sex. Disabil. 18(3), 159–166
(2000)
10. Corrigan, J.D.: Community integration following traumatic brain injury. NeuroRehabilitation 4(2),
109–121 (1994)
11. United Nation (UN): Convention on the Rights of Persons with Disabilities. https​://www.un.org/devel​
opmen​t/desa/disab​iliti​es/conve​ntion​-on-the-right​s-of-perso​ns-with-disab​iliti​es.html (2006). Accessed
March 2018
12. World Health Organisation (WHO): WHO Global Disability Action Plan 2014–2021: Better Health for
All People with Disability (2015)
13. Mikton, C., Shakespeare, T.: Introduction to special issue on violence against people with disability. J.
Interpers. Violence 29(17), 3055–3062 (2014)
14. Perlin, M.L., Lynch, A.J.: Love is just a four-letter word: sexuality, international human rights, and
therapeutic jurisprudence. Can. J. Comp. Contemp. L. 1, 9 (2015)
15. Moreno, A., Laoch, A., Zasler, N.D.: Changing the culture of neurodisability through language and
sensitivity of providers: creating a safe place for LGBTQIA+ people. NeuroRehabilitation 41(2), 375–
393 (2017)
16. Stolwyk, R.J., Downing, M.G., Taffe, J., Kreutzer, J.S., Zasler, N.D., Ponsford, J.L.: Assessment of
sexuality following traumatic brain injury: validation of the Brain Injury Questionnaire of Sexuality. J.
Head Trauma Rehabil. 28(3), 164–170 (2013)
17. Medlar, T.: The manual of policies and procedures of the SHIP sexuality education program. Sex.
Disabil. 16(1), 21–42 (1998)
18. Dombrowski, L.K., Petrick, J.D., Strauss, D.: Rehabilitation treatment of sexuality issues due to
acquired brain injury. Rehabil. Psychol. 45(3), 299 (2000)
19. Harris, J.E., Colantonio, A., Bushnik, T., Constantinidou, F., Dawson, D., Goldin-Lauretta, Y., Swaine,
B., Warren, J.: Advancing the health and quality-of-life of girls and women after traumatic brain
injury: workshop summary and recommendations. Brain Inj. 26(2), 177–182 (2012)

13
Sexuality and Disability (2020) 38:57–83 81

20. Niemeier, J.P., Kreutzer, J.S., Taylor, L.A.: Acute cognitive and neurobehavioural intervention for
individuals with acquired brain injury: Preliminary outcome data. Neuropsychol. Rehabil. 15(2),
129–146 (2005)
21. Simpson, G., Simons, M.: Promoting positive sexual development among children and adolescents
after acquired brain injury. Soc. Care Neurodisabil. (2010). https​://doi.org/10.5042/scn.2010.0205
22. Kreutzer, J.S., Stejskal, T.M., Godwin, E.E., Powell, V.D., Arango-Lasprilla, J.C.: A mixed meth-
ods evaluation of the Brain Injury Family Intervention. NeuroRehabilitation 27(1), 19–29 (2010).
https​://doi.org/10.3233/NRE-2010-0578
23. Backhaus, S., Neumann, D., Parrot, D., Hammond, F.M., Brownson, C., Malec, J.: Examination of
an intervention to enhance relationship satisfaction after brain injury: a feasibility study. Brain Inj.
30(8), 975–985 (2016). https​://doi.org/10.3109/02699​052.2016.11476​01
24. Sander, A.M., Hammond, F.M., Ripley, D., Moessner, A., Zollman, F., Hanks, R.A., Sander, A.M.,
Maestas, K.L., Pappadis, M.R., Hammond, F.M., Hanks, R.A.: Multicenter study of sexual func-
tioning in spouses/partners of persons with traumatic brain injury. Arch. Phys. Med. Rehabil. 97(5),
753–759 (2016). https​://doi.org/10.1016/j.apmr.2016.01.009
25. Sander, A.M., Moessner, A.M., Kendall, K.S., Pappadis, M.R., Hammond, F.M., Cyborski, C.M.:
Sexual Functioning and Satisfaction After Traumatic Brain Injury: An Educational Manual. http://
biawa​.org/docs/pdf/Sexua​l_Funct​ionin​g_after​_TBI.pdf (2011). Accessed 25 Sept 2019
26. Sandel, E., Delmonico, R., Kotch, M.J.: Sexuality and intimacy in traumatic brain injury. In: Zasler,
N.D., Katz, D.I., Zafonte, R.D. (eds.) Brain injury medicine: principles and practice. Demos Medi-
cal Publishing, New York City (2012)
27. Commission on Accreditation of Rehabilitation Facilities: 2019 Behavioural Health Program

Descriptions (2019)
28. Northcott, R., Chard, G.: Sexual aspects of rehabilitation: the client’s perspective. Br. J. Occup.
Ther. 63(9), 412–418 (2000). https​://doi.org/10.1177/03080​22600​06300​902
29. Moreno, J.A., Gan, C., Zasler, N.: Neurosexuality—a transdisciplinary approach to sexuality in
neurorehabilitation. NeuroRehabilitation 41(2), 255–259 (2017)
30. Dudek, S., Jeschke, K., Lehmkuhl, U.: Institutionalized queers: homosexuality in residential facili-
ties for people with cognitive disabilities. Disabil. Stud. Q. 26(2), 7 (2006). https​://doi.org/10.18061​
/dsq.v26i2​.698
31. Noonan, A., Taylor Gomez, M.: Who’s missing? Awareness of Lesbian, Gay, bisexual and transgen-
der people with intellectual disability. Sex. Disabil. 29(2), 175–180 (2011). https​://doi.org/10.1007/
s1119​5-010-9175-3
32. Luiselli, J.K., Sherak, D.L., Dunn, E.K., Pace, G.M.: Sexual behaviors among children and ado-
lescents with acquired brain injury: an incidence survey at a community-based neurorehabilitation
center. Behav. Interv. 20(1), 17–25 (2005). https​://doi.org/10.1002/bin.171
33. Mapou, R.L.: Traumatic brain injury rehabilitation with gay and lesbian individuals. J. Head
Trauma Rehabil. 5(2), 67–72 (1990). https​://doi.org/10.1097/00001​199-19900​5020-00011​
34. Moreno, A., Gan, C., Zasler, N., McKerral, M.: Experiences, attitudes, and needs related to sexu-
ality and service delivery in individuals with traumatic brain injury. NeuroRehabilitation 37(1),
99–116 (2015). https​://doi.org/10.3233/NRE-15124​3
35. Haag, H.L., Caringal, M., Sokoloff, S., Kontos, P., Yoshida, K., Colantonio, A.: Being a woman
with acquired brain injury: challenges and implications for practice. Arch. Phys. Med. Rehabil.
(2016). https​://doi.org/10.1016/j.apmr.2014.12.018
36. Frawley, P., Bigby, C.: ‘I’m in Their Shoes’: Experiences of Peer Educators in Sexuality and Rela-
tionship Education. Taylor & Francis, London (2014)
37. Frawley, P., Bigby, C., Slattery, J.: ‘Molly is Just Like Me’: Peer Education and Life Stories in
Sexuality Programmes in Australia. Jessica Kingsley Publishers, London (2014)
38. Blyth, C.: Good as you 2 (GAY2). In: Chapman, R., Ledger, S., Townson, L., Docherty, D. (eds.)
Sexuality and Relationships in the Lives of People with Intellectual Disabilities: Standing in My
Shoes, pp. 210–218. Jessica Kingsley Publishers, London (2015)
39. Repper, J., Carter, T.: A review of the literature on peer support in mental health services. J. Ment.
Health 20(4), 392–411 (2011). https​://doi.org/10.3109/09638​237.2011.58394​7
40. Frawley, P., Dyson, S., Robinson, S., Dixon, J.: What Does It Take? Developing Informed and
Effective Tertiary Responses to Violence and Abuse of Women and Girls with Disabilities in
Australia: State of Knowledge Paper. ANROWS Landscapes: State of Knowledge Papers Issue 3.
ANROWS, Alexandria, NSW (2015)
41. Moher, D., Liberati, A., Tetzlaff, J., Altman, D.G.: Preferred reporting items for systematic reviews
and meta-analyses: the PRISMA statement. Ann. Intern. Med. 151(4), 264–269 (2009)

13
 82 Sexuality and Disability (2020) 38:57–83

42. Melbourne City Mission (MCM): Compass. https​://www.melbo​urnec​itymi​ssion​.org.au/servi​ces/

disab​ility​-servi​ces/acqui​red-brain​-injur​y/progr​am-detai​l/abi-compa​ss (2015). Accessed 16 Oct
2018
43. Brain link: LifeMovesProgram. http://www.brain​link.org.au/page/2/peer-suppo​r t-progr​ams (2018).
Accessed 16 Oct 2018
44. Melbourne City Mission (MCM): Statewide ABI Paediatric Service. https​://www.melbo​urnec​itymi​
ssion​.org.au/servi​ces/progr​am-detai​l/abi-paedi​atric​-servi​ces-ndis (2015). Accessed 16 Oct 2018
45. Melbourne City Mission (MCM): Specialist ABI Support Coordination. https​://www.melbo​urnec​
itymi​ssion​.org.au/servi​ces/progr​am-detai​l/abi-suppo​r t-coord​inati​on-ndis (2015). Accessed 16 Oct
2018
46. Meixner, C., Hart, V., O’Donoghue, C.R.: Impact of the Brain Injury Family Intervention (BIFI)
training on rehabilitation providers: a mixed methods study. NeuroRehabilitation 40(4), 545–552
(2017). https​://doi.org/10.3233/NRE-17144​1
47. Simpson, G., Long, E.: An evaluation of sex education and information resources and their provi-
sion to adults with traumatic brain injury. J. Head Trauma Rehabil. 19(5), 413–428 (2004)
48. Backhaus, S., Ibarra, S., Parrott, D., Malec, J.: Comparison of a cognitive-behavioral coping skills
group to a peer support group in a brain injury population. Arch. Phys. Med. Rehabil. 97(2), 281–
291 (2016). https​://doi.org/10.1016/j.apmr.2015.10.097
49. Hamam, N., McCluskey, A., Cooper Robbins, S.: Sex after stroke: a content analysis of printable
educational materials available online. Int. J. Stroke 7, 518 (2013)
50. Hanks, R.A., Rapport, L.J., Wertheimer, J., Koviak, C.: Randomized controlled trial of peer men-
toring for individuals with traumatic brain injury and their significant others. Arch. Phys. Med.
Rehabil. 93(8), 1297–1304 (2012). https​://doi.org/10.1016/j.apmr.2012.04.027
51. Turner-Stokes, L., Pick, A., Nair, A., Disler, P.B., Wade, D.T.: Multi-disciplinary rehabilitation for
acquired brain injury in adults of working age. Cochrane Database Syst. Rev. (2015). https​://doi.
org/10.1002/14651​858.cd004​170.pub3
52. Morris, R.P.G., Fletcher-Smith, J.C., Radford, K.A.: A systematic review of peer mentoring inter-
ventions for people with traumatic brain injury. Clin. Rehabil. 31, 1030–1038 (2017)
53. Struchen, M.A., Davis, L.C., Hudler-Hull, T., Clark, A.N., Sander, A.M., Bogaards, J.A., Mazzei,
D.M., Caroselli, J.S.: Making connections after brain injury: development and evaluation of a
social peer-mentoring program for persons with traumatic brain injury. J. Head Trauma Rehabil.
26(1), 4–19 (2011). https​://doi.org/10.1097/HTR.0b013​e3182​048e9​8
54. Fleming, J., Doig, E., Kuipers, P., Foster, M., Smith, S.: Evaluation of an outpatient, peer group
intervention for people with acquired brain injury based on the ICF ‘Environment’ dimension. Dis-
abil. Rehabil. 31(20), 1666–1675 (2009). https​://doi.org/10.1080/09638​28090​27384​25
55. Bellon, M., Sando, S., Crocker, R., Farnden, J., Duras, M.: Information, connection and giving
back: peer support outcomes for families following acquired brain injury in South Australia. Health
Soc. Care Community 1, 204 (2017). https​://doi.org/10.1111/hsc.12294​
56. Hibbard, M.R., Cantor, J., Charatz, H., Rosenthal, R., Ashman, T., Gundersen, N., Ireland-Knight,
L., Gordon, W., Avner, J., Gartner, A.: Peer Support in the Community: Initial Findings of a Men-
toring Program for Individuals with Traumatic Brain Injury and Their Families, vol. 2, p. 112. Lip-
pincott Williams & Wilkins, WK Health (2002)
57. Bellon, M., Crocker, R., Farnden, J., Gardner, J., Sando, S., Peterson, C.: Family support needs
following acquired brain injury across metropolitan and regional/remote South Australia. Brain
Impair. 16, 131–144 (2015)
58. Godwin, E.E., Kreutzer, J.S., Kolakowsky, H.: Couples Relationships After Traumatic Brain Injury.
https​://tbi.washi​ngton​.edu/wp-conte​nt/uploa​ds/TBI_Coupl​es_Relat​ionsh​ips_after​_TBI.pdf (2012).
Accessed 16 Oct 2018
59. Godwin, E., Chappell, B., Kreutzer, J.: Relationships After TBI: A Grounded Research Study, vol.
28, pp. 398–413 (2014)
60. Ahmad, T., Yeates, G.: Sex and Sexuality After Brain Injury. Headway. https​://www.headw​ay.org.
uk/media​/4995/sex-and-sexua​lity-after​-brain​-injur​y-e-bookl​et.pdf (2017). Accessed 2 Jan 2020
61. The Disabilities Trust: BIRT Guide to Living—for Adults with Brain Injury. https​://www.thedt​group​
.org/brain​-injur​y/infor​matio​n-and-suppo​rt/the-birt-guide​-to-livin​g (2018). Accessed 16 Oct 2018
62. Mecklenberg, J.: Intimacy After TBI. https​://biaco​lorad​o.org/biac/wp-conte​nt/uploa​ds/2013/04/

Intim​acy-After​-TBI-Prese​ntati​on-9.11.13.pdf. Accessed 2 Jan 2020
63. Goldin, Y.: Intimacy, Sexuality and Reproductive Health After TBI. https​://pdfs.seman​ticsc​holar​
.org/prese​ntati​on/0378/25aa7​d5a8b​86772​9c947​e8ac5​0dfdd​82b81​2.pdf. Accessed 25 Sept 2019
64. McLaughlin, A.: Relationships and Sexuality After Brain Injury. https​://bianj​.org/wp-conte​nt/uploa​
ds/2017/05/Relat​ionsh​ips-and-Sexua​lity.pdf. Accessed 2 Jan 2020

13
Sexuality and Disability (2020) 38:57–83 83

65. Carter, C.: Marriage After ABI: Putting the Relationship Back Together. http://www.biama​.org/pdfs/
annua​l%20con​feren​ce/Annua​l%20Con​feren​ce%20201​8/AC201​8%20HAN​DOUTS​/24%20Mar​r iage​
%20aft​er%20BI.pdf. Accessed 2 Jan 2020
66. Arango-Lasprilla, J.C., Olabarrieta-Landa, L., Ertl, M.M., Stevens, L.F., Morlett-Paredes, A.,

Andelic, N., Zasler, N.: Provider perceptions of the assessment and rehabilitation of sexual function-
ing after Traumatic Brain Injury. Brain Inj. 31(12), 1605–1611 (2017). https​://doi.org/10.1080/02699​
052.2017.13327​84
67. Mead, S., Hilton, D., Curtis, L.: Peer support: a theoretical perspective. Psychiatr. Rehabil. J. 25, 134–
141 (2001)
68. Intentional Peer Support: Intentional Peer Support: An Alternative Approach. http://www.inten​tiona​
lpeer​suppo​r t.org/wp-conte​nt/uploa​ds/2014/12/IPS-An-Alter​nativ​e-Appro​ach-2014-First​-Chapt​er.pdf
(2018). Accessed 31 Oct 2018
69. Frawley, P.: Making Rights Reality: Final Evaluation Report. A Pilot Project for Sexual Assault Ser-
vices with a Cognitive Impairment. South Eastern Centre Against Sexual Assault (2014)
70. Southern Eastern Centre Against Sexual Assault and Family Violence: Making Rights Reality https​
://www.secas​a.com.au/servi​ces/makin​g-right​s-reali​ty-for-sexua​l-assau​lt-victi​ms-with-a-disab​ility​/
(2018). Accessed 16 Oct 2018

Publisher’s Note  Springer Nature remains neutral with regard to jurisdictional claims in published maps and
institutional affiliations.

13