Psychological Sexual Health of
People with Paraplegia
StefanoFederici, FrancescoArtegiani, DanieleDiotallevi,
GiovannaCaruso and Alessandra CastellaniMencarelli
People with paraplegia have to fight their own and societal attitudes and
stereotypes that reduce sexuality to the physiological functions of genitalia. These
psychological and social limitations arise from cultural and disability models that
focus sexual pleasure on phallocentric primacy, and sexual attractiveness of perfect
bodies. In this chapter, we evaluate the impacts of a psychoeducational intervention
in a personal growth group on the sexual life of two groups of people with spinal
cord injury (SCI) and their partners, throughout their sexual interest and satisfac-
tion, depression, and anxiety. In the first study, nonparametric statistical tests
were used to compare pre- and post-outcome measures for all participants. In the
second study, the grounded theory was used to explore dialogs and activities that
were audiotaped during the group meetings. The participants in both groups were
patients and their partners. The psychoeducational intervention was clearly effec-
tive in increasing sexual interest and satisfaction as well as the motivation and abil-
ity to enjoy sexuality. Anxiety was minimized for all participants, although it may
not have been associated with the psychoeducational intervention. In addition, the
intervention significantly improved the partner and patient group’s opportunity
and ability to enjoy sexuality.
Keywords: spinal cord injury, sexuality, sex stereotypes, biopsychosocial model,
sexuality and disability, people with paraplegia
When someone has experienced spinal cord injury (SCI), the first question they
often ask is, “Doctor, will I ever walk again?” The thought soon after—sometimes
never verbalized—emerges with equal urgency: “Will I be able to have sex?” This
question is not answered easily, although the slogan of the American Consortium
for Spinal Cord Medicine  exhorts to believe that “No injury, no matter how
serious, can take away your ability to have a relationship, experience love, and
experience the attraction between two people” (p.3). People with SCI face many
difficulties to regain confidence in themselves and their ability to experience
intimacy and affection . These challenges do not just emanate from the genital
dysfunction caused by the injury, including alterations or loss of genital sensation,
or erection, ejaculation, lubricate, and orgasm [3, 4]. They also arise because they
must rediscover a new way of pleasure to themselves and others by learning to
inhabit a body that in many ways is new and dissimilar and requires a different way
of touching, caressing, and exploring themselves and their partner .
In addition to this difficult adjustment to changes, like many other people with
disabilities, people with SCI have to battle with their own and societal attitudes
and stereotypes that deny individuals with disabilities are sexual beings [4, 5]. Such
attitudes and stereotypes are the results of two pervasive and interrelated miscon-
ceptions (myths), which very often influence human thinking and behavior: bodily
perfection  and asexuality [7–10]. These two myths arise from a disability model
that is often known as the medical model of disability [11, 12], whereby people are
deemed disabled due to their medical condition or impairment [13, 14]. Therefore,
disability is understood as an individual inability to conform to a standard of nor-
mality, namely when the abnormality occurs within the person , making him/
her different from the majority of people .
According to this (medical) disability model, people with SCI have a disability
in sexual relations due to the limitation or lack (resulting from the injury) of ability
to conduct sexual activity in the manner that is considered normal or ideal .
Here, the interrelation between bodily perfection and sexual activity is closely
and precisely related. ‘Abled’ people have to see the person with SCI as asexual
because the injury obviously has affected the capacity to perform the so-called
normal sexual activity. Conceiving sexual activity by a person with a disability for
a ‘normal’ population would mean admitting to imagine an abnormal (monstrous)
sexuality [8, 18].
The myths of bodily perfection and asexuality of disabled persons are not
mere social constructions that influence attitudes and stereotypes. Every cultural
context and historical period encompasses an ideal of bodily beauty and sexual
behavioral norms . Therefore, we should find such myths as universal human
convictions [20, 21] that emerged from psychological mechanisms that evolved
to solve long-enduring adaptive problems characteristic of the ancestral human
environment . Mating with someone who is unhealthy could pose a range of
adaptive risks to our ancestors, including transmitting communicable diseases or
viruses, impacting survival and reproduction, infecting children, and jeopardiz-
ing the children’s chances of survival and reproduction [23, 24]. Hence, human
survival was guaranteed by an evolved psychological mechanism to avoid contact
and sexual intercourse with persons with visible deformity [25, 26]. Park etal.
 found that individual differences in disease perception predict immediate
cognitive responses that connect physical disability to disease (medical model)
and also predict behavioral avoidance (disgust) of people with physical dis-
abilities. Meloni etal.  also found a relationship between an evolved disease
avoidance mechanism and contemporary prejudices that affect individuals with
It should be noted that the field of psychiatry has a specific term for the sexual
attraction to the body of a person with a disability: devotism. This concept is con-
sidered suspect and, to a certain extent, pathological; it is classified as a paraphilia
in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition .
Another signal that the medical disability model might act as an innate psy-
chological mechanism below the two cultural constructs of bodily perfection and
asexuality, as a cognitive constraint , is the occurrence of disability explanation
compatible with the medical model early in childhood [31–33], independent of
parents’ disability representations and explanations .
Like the nondisabled, most people with SCI have grown up believing that dis-
ability is deviance and that bodily perfection is the standard . As Susan Wendell
wrote in her famous autobiography book The Rejected Body , to identify oneself
Psychological Sexual Health of People with Paraplegia
as a disabled person requires a change in one’s own personality and a radically new
way of thinking about oneself. The SCI is almost always a devastating event with
many life-changing consequences, all of which require a number of changes during
their post-injury lives [35, 36]. Sexual adjustment to SCI is one of those problems
that is closely related to body image , general psychological health, overall self-
esteem [37, 38], and body attractiveness [10, 39].
In a male-centered patriarchal culture —characterized by unequal relation-
ships between men and women (polarization) and power distribution (androcen-
trism), and biological essentialism (i.e., gender and roles vary by nature) —the
sex most people get to know is totally phallocentric (penis centered). According to
Freud , around the age of five, children become aware that they either possess
a penis or do not possess a penis and that having a penis is “a proud possession”
. Conversely, for women, the absence of a penis makes them “victim to envy
for the penis” . The recognition that one has or does not have a particular set of
genitals is, for Freud, tantamount to recognizing the gender to whom they belong.
“I have a penis” means “I am a boy” and “I do not have a penis” means “I am a girl.”
In this system, the gender identity is a genital (penis-centered) identity. As Rubin
“The alternative presented to the child [to have a penis or to be castrated] may
be rephrased as an alternative between having, or not having, the phallus. […]
The presence or absence of the phallus carries the differences between two sexual
statuses, ‘man’ and ‘woman’.” (p.191)
This penis orientation relates to the awareness that having and using erections
has something to do with masculinity . Therefore, “males are in constant danger
of losing their manhood and their identities”  when the erectile functions are
compromised. As testified by Tepper , a sexuality educator and counselor living
with SCI, “[T]he man with erectile dysfunction, inhibited ejaculation, loss of sensa-
tion, or physical limitations might conclude that his sex life is over.” (p.45).
Extensive research on erectile functions and male sexuality has largely over-
looked the female sexuality of women with SCI [39, 46, 47]. This phenomenon
is not surprising within Judeo-Christian androcentrism that restricts the sexual
role of a woman to a reproductive function within the family and the ability to
stimulate and satisfy a man’s own sexual appetite . This view denies women the
experience of sexual pleasure . Given that SCI neither compromises the recep-
tive function of female sexual organs nor a woman’s reproductive capacity , the
biggest issues for women after SCI is usually focused on the perceived attractiveness
of their bodies , that is, as a function of male sexuality. In an androcentric,
penis-centered sense of sexuality—that Tom Shakespeare  defined as the
“fucking ideology”: heterosexual and penetrative intercourse with a male on top
of a female—characterizing Judeo-Christian androcentrism, loss of genital sensa-
tion does not compromise a woman’s sexual role. The Austrian philosopher Otto
Weininger, a Jew who converted to Christianity in 1902 and who became a real
posthumous celebrity within the German-speaking cultural world of the early
twentieth century and beyond, in his popular and influential book on sex and
character  published in 1903, explained the difference between a mother and a
prostitute, woman’s polar attributes (sic), “The mother does not experience sexual
intercourse any less than the prostitute, but differently. The mother’s behaviour is
mainly receptive and accepting, while the prostitute feels and savors the pleasure
to the extreme” (p.205; emphasis in the original). Far from it, the loss of genital
sensation ensures the woman’s virginal and chaste role  (see also the traditional
practice of female genital mutilation in Islamic cultures that involves more than 200
million girls and women in 30 countries worldwide: https://www.unicef.org/media/
files/FGMC_2016_brochure_final_UNICEF_SPREAD.pdf). Alexander and Rosen
 and Komisaruk and Whipple  provided other evidence of a different focus
on the sexuality of women with SCI compared to men. Women are oriented to giv-
ing rather than receiving pleasure. As both studies found, the major sexual concern
of women is the diminishing opportunity and ability to give their partner sexual
fulfillment because the disability disfigured the beauty of their body. Moreover,
according to Kettl etal. ,
“The biggest and most remarkable change [for women] after spinal cord injury in
our study was the worsening in body image. This was far greater than any change in
ratings of sexual practice or enjoyment.” (p.294)
Given that the sexual role of a woman in patriarchal cultures is restricted to
the attractiveness of their body as a function of male sexuality, in a reverse sense,
this factor can also be their shame. In fact, a woman’s attractiveness is perceived
similarly to penis erection, that is, a sexual behavior: when a male finds an attractive
body, then sex is allowed because the former is a function of the latter. As LaRocca
and Kromrey  found, male students consider an event to be more harassing
when the victim was unattractive (read, not sexually available) compared to when
the victim was attractive (read, sexually available). This stereotype is certainly no
less affecting in women’s judgment, who consider an event as more harassing when
the victim was attractive (if sexually available, why violence?) than when the victim
was unattractive (because of sexual unavailability, male violence allowed). Thus,
Golden reports  that an action by an attractive male directed toward an unat-
tractive female is more likely to be identified as not harassing. From a recent survey
conducted by the Italian National Institute of Statistics  on stereotypes on
gender roles and the social image of sexual violence, the prejudice that blames the
woman for their suffered sexual violence still persists. For instance, 23% (without
gender differences) believe that women can cause sexual violence with their way
of dressing (read, their attractiveness). Therefore, it is not surprising that the main
sexual concern of women with SCI is to have a body that is no longer attractive,
no longer capable, that is, of giving their partner the ‘right’ sexual pleasure, and
run the risk of deserving violence. Still in a recent survey conducted in the United
Kingdom, Thrussell etal. , in accordance with previous literature, reaffirm that
for women with SCI.
“satisfaction with body image was reduced. To look ‘sexy’ was difficult […].
Lacking confidence and feeling sexually unattractive during rehabilitation was
common; support and opportunities to improve self-confidence, self-esteem, body
image and social skills were identified as essential.” (pp.1088–1091)
The aim of this chapter is to provide data for the Love & Life project that was
collected from two interventional studies led by two growth groups. The project
was performed in the Unipolar Spinal Unit of the ‘S.Maria della Misericordia’
hospital in Perugia (USU-PG). This unit is one of the 22 spinal units that comprise
the Italian National Health System, of which 9 are unipolar. Love & Life aims to
enhance the psychological sexual health of USU-PG in- and outpatients and their
partners. To achieve this goal, the project follows the biopsychosocial sexual health
model of the World Health Organization [57, 58] and human functioning .
This positive, holistic, and comprehensive view states that sexual health is “a state
Psychological Sexual Health of People with Paraplegia
of physical, emotional, mental, and social well-being in relation to sexuality; it
is not merely the absence of disease, dysfunction, or infirmity” (, p.3). This
view implies overcoming the reduction of the medical model and its socio-cultural
products (myths, attitudes, stereotypes, and prejudices), which restrict sexuality
to the physiological function of genitalia, phallocentric primacy of sexual pleasure,
and attractiveness of only bodily perfection. The Love & Life initiative facilitates a
psychological (emotional and behavioral) change, which increases self- and sexual
esteem and satisfaction. By promoting a psychoeducational personal growth group
, people with SCI and their partners can experience, express, and rework
thoughts, fantasies, desires, beliefs, attitudes, values, behaviors, roles, and relation-
ships about sexuality .
This project was approved by the ethics committee of the Department of
Philosophy, Social & Human Sciences, and Education, University of Perugia. The
project information was disseminated both orally and in paper format. Written
informed consent was recorded for each group member on a prepared form by
2. Study 1
The inpatients were recruited from the USU-PG by the psychologist working
in the unit between November and December 2017. All inpatients admitted to the
USU-PG received a brochure with the goal of the Love & Life initiative, participation
requirements, topics for the sessions on sexual life in the personal growth group,
schedule of meetings, and leaders’ names and phone numbers. The same content was
also presented in a poster format in unit corridors and in other hospital departments.
In the same time, IR also recruited outpatients from the USU-PG patient registry
by phone. The personal growth group on sexual life met in the USU-PG wheelchair
accessible rehabilitation room from December 2017 through May 2018.
The inclusion criteria for attending the Love & Life personal growth group on
sexual life were the following:
• Provide voluntary written informed consent
• USU-PG in- and outpatients with a traumatic SCI (para- or tetraplegic), with
or without a partner
• Current partner (wife, husband, or sexual partner) of in- and outpatients of
USU-PG who attended the Love & Life personal growth group
We use ‘participants’ to refer to all those who attended the growth group on
sexual life and ‘patients’ to refer to both inpatients and outpatients. Fourteen
participants attended the growth group on sexual life from December 2017 to
May 2018. Only 11 participants were included in the present study, as explained in
Section 2.7 (the subsection ‘Sample’).
2.3 Measurements and procedures
A sociodemographic questionnaire and three outcome measures were self-
administered (see below) by participants and their partners who had provided
voluntary written informed consent during the recruitment process. The outcome
measures were administered again at the end of the last group meeting.
Sociodemographic questionnaire. This form was developed ad hoc to collect data
on participants’ age, gender, sexual orientation, type of SCI (para- or tetraplegia),
civil status, children, education, employment, citizenship, political orientation,
and religious beliefs. The sexual orientation was rated on the Kinsey scale , also
called the Heterosexual-Homosexual Rating Scale. It ranges from 0 to 6, with ‘0’
indicating exclusively heterosexual/opposite sex behavior or attraction and ‘6’ indi-
cating exclusively homosexual/same-sex behavior or attraction. Ratings 1–5 are for
those who report varying levels of attraction or sexual activity with either sex. The
sociodemographic questionnaire was administered to all participants once, before
the start of the first group meeting.
Sexual Interest and Satisfaction (SIS) scale. This measure is a six-item scale
designed to measure sexual adjustment after SCI . It is used to assess inter-
est in and satisfaction with sexuality before and after injury . Partners of the
participants with SCI were instructed to answer the questions by making reference
to before and after their partners’ injury. Participants are asked to give answers on
a scale of 0 (non-existent/very dissatisfying) to 3 (increased/very satisfying). This
sexuality scale is one of the few that has been used within the SCI population .
Only one study  reported validity and reliability properties of the scale on a
sample of 73 SCI subjects (60 male; mixed injury types; SCI duration >1year). The
SIS scale showed a high correlation with age at injury and moderate-to-high correla-
tion with quality of life, and a high internal consistency (Cronbach’s α=0.96).
Beck Depression Inventory-II (BDI-II). In its current version, the BDI-II is a
21-question multiple-choice self-report inventory that comprises items relating to
symptoms of depression such as hopelessness and irritability, cognitions such as
guilt or feelings of being punished, and physical symptoms such as fatigue, weight
loss, and lack of interest in sex . Scores for statements ranged from 0 (e.g., “I do
not feel sad”) to 3 (e.g., “I am so sad or unhappy that I can’t stand it”). Higher total
scores indicate more severe depressive symptoms. The reliability and validity of the
BDI-II in the Italian population have been demonstrated .
Beck Anxiety Inventory (BAI). This measure was designed to differentiate anxiety
from depression . The respondents indicate how much they have been bothered
by each of the 21 symptoms during the past week. Symptoms include the inability
to relax and trembling hands. Respondents rated each symptom on a scale ranging
from ‘not at all’ (0) to ‘severely’ (3). The reliability and validity of the Italian BAI
have been demonstrated .
2.4 Structure, content, and techniques of the psychoeducational intervention
The personal growth group met every fortnight for a total of 12 meetings, each
of which lasted for 2h. The sessions were held by psychologists and psychothera-
pists with expertise in sexuality and disability. The group meetings were organized
in two parts: informative and practical. The informative part covered six topics,
each for two meetings: (i) Me and my new body, (ii) Affective-relational commu-
nication, (iii) Between identity and sexual orientation, (iv) Discovering pleasure,
(v) Live sexual life, and (vi) Aids to pleasure. The contents were also transmit-
ted through the projection of videos and sexually explicit images, starting from
the assumption that observational learning has an informative and motivational
Psychological Sexual Health of People with Paraplegia
function [68–71]. The interactive practical part—dedicated to personal growth
and body awareness—utilized cognitive-behavioral therapy, Gestalt therapy, and
emotion-focused therapy techniques. Through the cognitive-behavioral therapy
techniques (e.g., problem management, role-playing, imagery, and modeling) ,
Participants were driven by the cycle of creating thoughts and emotions associ-
ated with their own sexuality to address stereotypes and derogatory beliefs about
sexuality and disability, masturbation, orgasm, pleasure, sexual fantasy, sexual
identity, and the beauty and attractiveness of the body. This process included the
identification of possible dysfunctional patterns of self that negatively influenced
the relationship with their partners. This effort meant overcoming the reductionist
view that stems from both the disability medical model, which limits sexuality to
the physiological functions of genitalia and genital sensation as the only possibility
for sexual experience and heterosexism. Through Gestalt therapy  and emotion-
focused therapy techniques , the emergence of a new sexual concept has been
reinforced by increasing awareness on bodily feelings, stressing the relationship and
the cycle of reflection on exciting emotions to create new meaning. For example, we
used an empty chair and the imagination of the participants to develop and direct
dialogs to help them reconcile contrasting aspects of their experience, pay attention
to the body and verbal language, concentrate on emotions and the here and now of
the relationship with the therapist or other group members. See the Supplementary
Material to , where two topic guides are provided as an example of two group
meetings on sexual life.
During the personal growth group meetings, a computer (Lenovo, ThinkPad
T560), projector (Epson EB-S05), and wireless speaker (JBL Clip2) were used to
watch educational videos and images and perform some psychology exercises (e.g.,
visualization and relaxation exercises).
2.6 Data analysis
All data were processed using IBM SPSS Statistics for Windows, Version 25
(Armonk, NY). Due to the small sample size, nonparametric statistical tests were
used. Specifically, the Wilcoxon test for paired samples was used to compare pre-
and post-intervention scores on the SIS, BDI-II, and BAI for the complete sample
(participants) and the two sub-groups (patients and partners).
To determine the effect size of the intervention, r was used, which was calcu-
lated by dividing the z value by the square root of N (number of cases used in the
analysis). The interpretation of r values for effect size is relatively similar to Cohen’s
d . It was considered negligible if it was less than 0.10, small from 0.10 to 0.30,
medium between 0.30 and 0.50, and high if it was greater than 0.50. Although we
used nonparametric statistics for the analyses, means and standard deviations of
the variables (instead of the median) were reported whenever possible. An inde-
pendent sample Kolmogorov-Smirnov test was also used to compare the patients
and partners groups and consider possible gender effects.
Sample. Three out of fourteen male participants who signed the informed
consent and participated in the group meetings did not complete the complete
sociodemographic questionnaire and/or outcome measures. Therefore, they have
been excluded from data analysis. Of the remaining 11 participants (female: N=6,
54.5%; male: N=5, 45.5%), 4 males had complete paraplegia, 1 female had com-
plete tetraplegia, and 1 female and male each had incomplete paraplegia. All of
them were outpatients during the group activity. For all participants, the cause of
SCI was traumatic (years from injury: M=38.1; min=26; max=50; SD=9.44). All
four partners of the participants with SCI were females. The 11 group participants
included 4 couples (8 individuals). One female participant with SCI reported not
having a romantic or sexual partner.
Outcome measures. All participants (N=11) improved significantly on SIS
scale item 5 (“How are your opportunity and your ability to enjoy sexuality your-
self?”; z=−3; p<0.01), SIS scale total score (z=−2.53; p<0.05), and BAI scores
(z=−1.99; p<0.05). The effect size was high in all cases (r=0.90, r=0.76, and
r=0.60, respectively). There was no difference in the scores for the SIS general
satisfaction after injury or BDI.
A significant effect was found on SIS scale item 5 (“How are your opportunity
and your ability to enjoy sexuality yourself?”) for both patients (N=7; z=−2.24;
p<0.05) and partners (N=4; z=−2; p<0.05) with a high effect size (r=0.84 and
r=1, respectively). There were no effects for the total score or general satisfaction
after injury for the SIS scale, BDI-II, or BAI.Further, there were no significant dif-
ferences between genders or patients and partners. See  for more details on the
pilot data of Study 1.
3. Study 2
3.1 Setting and participants
Recruitment procedures and eligibility criteria for participation were the same as
in Study 1. The personal growth group on sexual life met from January to June 2019in
the rehabilitation room of the USU-PG; it is accessible to wheelchairs. Only 7 partici-
pants were included in the present study, as explained in the subsection “Sample.”
3.2 Measurements, procedures, and apparatus
The self-administered sociodemographic questionnaire, outcome measures,
procedures for administration, and structure, content, and techniques of the psy-
choeducational intervention were the same as in Study 1. A Sony ICD-PX312 audio
recorder was added to the apparatuses described for Study 1 (Section 2.5) to record the
dialogs of each meeting. The COnsolidated criteria for REporting Qualitative studies
(COREQ) checklist was followed in reporting the results . The COREQ checklist
is available at .
3.3 Data analysis
Outcome measures. Nonparametric statistical tests were used due to the small
sample size (Wilcoxon test for paired samples), and the r to determine the effect
size of the intervention interpreted similarly to Cohen’s d , as in Study 1.
Qualitative data. In grounded theory, data collection and analysis occur simul-
taneously . The 12 meetings of the personal growth group were all audiotaped
by two independent researchers (GC and ACM). All audio recordings from the
24 meetings were then transcribed, carefully read, and indexed according to
thegrounded theory coding procedure [78, 79]. To investigate the effects that the
psychoeducational intervention has had on the participants’ sexual health, the most
significant verbal expressions were identified, and a code/index was assigned to each
Psychological Sexual Health of People with Paraplegia
one through a three-phase-inductive logic procedure, by studying the topic within its
context and using an emerging design. See the Supplementary Material, where the
codebook and detailed qualitative data analysis of each meeting are reported .
The reliability of codes was evaluated through measuring intercoder agree-
ment, assessing the degree of trustworthiness of each code assigned to the same
portion of text by GC and ACM.The level of agreement between two researchers
was assessed using Krippendorff’s alpha for nominal items ; reliability was
considered optimal if α≥0.800, suboptimal with α≥0.667, and non-optimal
otherwise (Table 1).
The manual text analysis was transferred to Atlas.ti software (version 8.4) to
measure intercoder agreement and calculate the occurrences of the categories and
their relevance. Finally, through the software, the codes that emerged from the
transcriptions of each meeting were compared to evaluate any differences in the
theoretical construct that characterized them. By detecting how the codes devel-
oped with the progression of the meetings, it was possible to infer the effect of the
psychoeducational intervention on the participants’ sexual health.
Sample. One male and one female (out of nine participants) who signed the
informed consent and participated in the group meetings did not complete the
entire sociodemographic questionnaire and/or the outcome measures. Therefore,
they were excluded from data analyses. Of the remaining 7 participants (female:
N=1), 2 males had complete paraplegia, 2 males had complete tetraplegia, 1 male
had incomplete paraplegia, and 1 male had incomplete tetraplegia. Five of them
were outpatients during the group activity. For 5, the cause of SCI was traumatic
(years from injury: M=8; min=0.75; max=11; SD=3.03). The participating
female was the partner of a male with SCI, the only couple in the group. Three male
participants with SCI reported not having a romantic or sexual partner.
Outcome measures. Although not significant, there was an increase in the raw
values for all participants (N=7) on SIS scale item 5 (“How are your opportunity
and your ability to enjoy sexuality yourself?”; M=1.29–3.57), SIS scale total score
(M=10.86–13.14), and SIS scale general satisfaction after injury score (M=−1.57
to −2). The effect size was medium in all cases (r=0.36, r=0.46, and r=0.60,
respectively). There were no significant differences in the scores for BDI-II and BAI
and between genders or patients and partners.
Semantic domain Krippendorff ’s Cu-α/cu-αKrippendorff ’s c-α-binary
Efficacy of therapeutic intervention 0.822** 0.885**
Rehabilitation of sexuality 0.945** 0.793*
Difficulties from exercises 0.900** 0.818**
Disability experience 0.951** 0.832**
Sexuality experience 0.887** 0.796*
Relationship 1.0** 0.7 74*
Perceived support 1.0** 0.853**
Tot a l 0.788*0.951**
Level of agreement between the two independent evaluators, as scored using Krippendorff ’s alpha.
Qualitative analysis assisted by Atlas.ti. The findings resulted in the core category
‘psychological sexual health after SCI’ and identified the experience of evolving
sexuality during the personal growth group. Three main themes were identified,
supported by seven categories: (1) disabled sexuality, (2) influences of family and
social environment, and (3) effects of psychoeducational intervention. As shown in
the diagram below (Figure 1), the three themes can be assumed to represent three
stages of the same process—each one inextricably influenced by the others—and
resulting in the ultimate purpose of the intervention, namely to achieve sexual
health after SCI.
Theme 1—Disabled sexuality: “I don’t know how your body can react to my
caress, it’s not like before.”
Participants expressed their experience of sexuality as influenced by their
impaired body. They reported psychological experiences related to living with a dis-
ability or with a partner with a disability, a phenomenon that negatively influenced
daily life and sexuality, compromised the possibility of giving and receiving sexual
pleasure, and hampered the ability to experience intimacy and affection after SCI.
Disability was experienced as an element that leads to an imbalance in the life of
the person with SCI and their family, causing anger, anxiety, depression, difficulties
in self-regulation of emotional states, and caregivers’ psychophysical exhaustion.
It was better that I hadn’t been saved from the accident [...] I would have felt noth-
ing, and years would have passed, that the people who love me wouldn’t. (DM).
There was a constant focus on past life, which was valued more positively than
present life, often due to encountering difficulties in accepting disability (one’s own
or her or his partner’s), discomfort, and negative self-perception. In fact, physical
changes in sexual function and masturbation emerged.
Initially, I had written only a couple of problems related to masturbation, which
were those of lack of sensitivity, […] of not achieving orgasm as before and there-
fore this created small desire and small excitement, so small desire to masturbate.
I wouldn’t feel pleasure if I touched myself or someone touched it [my penis]. (DM).
It often happens to me that it [my penis] thinks the way it thinks, and I think
different from it [...] I can’t see if I can put this [my penis] and this [my head] in
Core categories resulted by the qualitative analysis assisted by Atlas.ti and their inter-relationship.
Psychological Sexual Health of People with Paraplegia
Related to masturbation before the accident and afterwards, it became almost
completely absent for me, right? Because it doesn’t give me, to this day, the same
satisfaction that it did before. (DP).
Unfortunately, I haven’t tried them [sensations] now, because I don’t have the use
of my hands and nothing, I can’t even think about masturbating right now. (SA).
The participants presented common stereotypes about sexuality and consequent
experiences with the topic: performance anxiety, sexual dissatisfaction, loss of
interest, and perception of not being attractive.
I was the first one to call myself asexual or disabled (DP).
I can’t… I couldn’t, I mean, or I could more hardly woo a girl and then tell her to go get
a pizza, and then I probably couldn’t do what I was able to do when I was . (SP).
Finally, there were two opposing attitudes: sexual desire and fear.
I caress him (my partner with SCI) in the face and I feel something moving inside
of me, but it doesn’t go... it can’t go any further. It can’t... and then I think back to
the past. And from there I get stuck. (GA).
Theme 2—Influences of family and social environment: “I’ve seen them look
at me differently.”
Familial, social, and professional relationships influenced sexual dialog with
current or future partners. The participants expressed that there were changes in
relational experiences and reflections on the perceived level of support.
The participants reported role changes within the family and conflicts in
At home I did everything, I was the fulcrum. (SA).
Now we talk to each other all the time with something… a little bit of anger, of... if
he doesn’t want to talk, shut up like he used to, and I’ll raise my voice. (GA).
Furthermore, the participants expressed difficulties in finding a romantic/
sexual partner, and disability was described as a cause of being discriminated.
I believe, from a purely subjective point of view, that not all, I speak of the female
counterpart, have a detail, that is ‘patience’. About knowing problems of who is in
a wheelchair and then get to normal sexual intercourse, or… develop fantasies about
being in a wheelchair and whatever else. (FC).
There was someone I haven’t seen in a long time. When he saw me, I felt like I had
the worst disease in the world from the look on his face. (SF).
Many people always see only the wheelchair; they don’t see the person, the wheel-
chair as an inanimate object. I just need it to carry that person… not that person,
that pile of muscle, bones and whatever else from point A to point B. (FC).
The participants also reported that they did not receive enough support (familial
and institutional) in coping with the changes brought about by their disability.
Others felt supported by family members and found the psychological support
received in the rehabilitation process and in the personal growth group important.
I am working a lot, swimming pool, gym, all private clearly, because it is useless,
after years I have seen them all. (SA).
Even my children, they can’t understand my anger. (GA).
[My partner] is sincerely facing this sexuality on her part, this sexuality [...] in
general, she is facing this problem with extreme naturalness, tranquillity, and
Thanks to you, professionals, who have been supportive along the way. (FC)
Theme 3—Effects of psychoeducational intervention. “I have discovered that
sexuality is not only physical, but there is also the more satisfying aspect, which is,
really, that which goes beyond the physical part.”
This theme includes the effects that the intervention had during personal
growth. Starting from the expectations of the participants, there were moments in
which the therapeutic environment proved to be effective in achieving its goals. At
other moments, the group showed difficulties during the exercises.
The therapeutic environment was effective in changing the participants’ state of
activation. It provided relaxation and well-being and presented strategies and new
perspectives that increased self-esteem.
I feel that there are a lot of things to do, and it has given me a line, a direction. I
was really looking for it. (SA).
I did a good job. I also felt some emotions, perhaps crossing the eyes of SA., or FA...
[...] and it made me feel good emotions. (SF).
Maybe more self-esteem? That is, if I was on a certain level of self-esteem and
courage [...], the encounters have given back a bit of lymph in being able to deal
face-to-face this kind of topic with a person. (FC).
The exercises stimulated insight and introspection. Sharing within the group was
considered by the participants as a means of enrichment.
I realize [...] how limiting was my past way of doing. I understand very well the
potential of the mind and how restricted was the vision of sexuality that I had
before with respect to what could be or is. [DP].
The most encountered difficulties concerned the expression of personal experiences
or those related to the intimate sphere, exercises of imagination, and auto analy-
sis, the latter for members in whom the exercises evoked thoughts related to the
traumatic event and past life.
When we started talking about sexology, my head went haywire. (GA).
By doing this, in quotes, experiment happiness took my breath away. (DM).
Finally, the intervention stimulated motivation to recover sexual health after SCI,
with an emphasis on the relational component rather than the physical component
of the sexual experience. The participants demonstrated that they understood
the importance of exploring the body and resources, as well as the possibility of
developing compensatory mechanisms and sexual assistance.
Psychological Sexual Health of People with Paraplegia
With my partner every little sign that approaches sexuality is amplified, every
caress, every word, every gesture enters me with amplified power. (SF).
My new sexuality can be a caress, a kiss, a “thank you”, a word in need... this is
sexuality for me now. The closeness, the awareness of being together and interact-
ing, sometimes. Together. (GA).
To be aware that, sexuality is not something that just sits there. We talked about
physicality, but it finds its own progression also through other... other forms of...
sharing, of participation. (SP).
Let [the sexual assistant] help me or reveal some secrets, some little tricks so that I
can interact with him. (GA).
The two studies provided pilot data on the effectiveness of a psychoeducational
intervention for the sexual life of two groups of in- and outpatients and their part-
ners performed at the USU-PG.We would like to emphasize that the first notewor-
thy outcome of this project (Love & Life) was the realization of an initiative aimed
at promoting the sexual life of people with SCI in an Italian public health facility. As
far as we know, this project was the first in Italy to tackle the issue of improving sex
life and not just treating sexual dysfunction of people with SCI.Given the novelty of
the initiative, we have had to battle with deep psychological, cultural, and religious
reluctance to accepting the treatment of sexuality as an inherent aspect of personal
well-being that no trauma can eradicate. Breaking the resistance of people (disabled
and non-disabled, patients and partners, health workers and laypeople) even to con-
sider that people with SCI also have the capacity to have relationships, experience
love, and experience sexual and romantic attraction was a big deal. Having said that,
23 people’s involvement is already reflective of the effectiveness of our initiative.
4.1 Sex, education, religion, and other characteristics of the participants
Although the composition of the personal growth groups on sexual life was not
defined in any way by the criterion of representativeness of the Italian population
to the SCI, some of the characteristics of the sample tend to be compatible with the
main SCI data. For instance, the prevalence of males with SCI in the group reflected
the worldwide male-to-female ratio (4:1) [81, 82]. Only one participant (Study 2)
has reached a master’s degree level, only one a bachelor’s degree (Study 1), and six
a high school diploma (Studies 1 and 2). This finding is consistent with another key
fact: SCI is associated with lower rates of school enrolment .
Except for one patient (Study 2), the cause of SCI was traumatic. The mean age
when the traumatic event occurred was 37.2years, data that are consistent with
Pagliacci etal.  on the Italian SCI population (38.5years). Ten participants
declared that they were Roman Catholic, five from Study 1 and five from Study 2.
Two of them (Study 1) were a lesbian couple with a civil union. The remaining par-
ticipants declared themselves non-religious. In the two samples studied, the Catholic
affiliation was lower than the national average—74.4% according to Ipsos Public
Affairs . Dealing with a sexually explicit topic seems to attract more people who
do not have a religious affiliation or an orthodox view (e.g., lesbian couples in civil
unions) because religions have specific sex teachings that can condemn masturba-
tion or sexual relations outside of a heterosexual marriage [1, 19, 45, 49, 85–87].
4.2 Outcome measures and effect size
The effectiveness of the psychoeducational intervention was clearly apparent,
denoted by a high (Study 1) or medium (Study 2) effect size in improving sexual inter-
est and satisfaction as well as the opportunity and ability to enjoy sexuality. Anxiety
was also reduced for all participants in Study 1 but not Study 2, although this outcome
may not have been related to the psychoeducational intervention. Conversely, the
intervention did not appear to significantly reduce levels of depression in patients or
partners (Studies 1 and 2). This result might be clarified by the fact that the level of
anxiety reported at the beginning of the first group meeting may be influenced by the
context of novelty and sensitivity of the topic. When the re-test was carried out at the
conclusion of the last group meeting, the climate was more friendly and the issue of
sexuality less concerning. Hence, the decreased levels of anxiety could be more due
to an intervening variable (anxiogenic context) than to treatment effectiveness. This
potential fact could also explain why there has been no improvement in the levels of
depression, which usually tends to positively correlate with anxiety [66, 88]. Indeed,
the personal growth group on sexual life was primarily focused on improving aware-
ness of sexuality conveyed by sexually explicit videos and therapy techniques focused
on feelings and social relationships. Anxiety and depression might be determined by
many other factors  that affect the quality of life of the patients and, consequently,
their partners, besides sexual function, interest, and satisfaction. In addition, an effi-
cacious psychotherapeutic treatment for observing reduced anxiety and depression
might require more than 12 meetings over a period of 3months [89, 90]. However, our
findings correspond to the study by Harrison etal.  in which anxiety and depres-
sion were experienced by the same individuals, and anxiety—but not depression—was
related to the sexual dysfunction of a woman with SCI.
4.3 Qualitative data (study 2)
The effectiveness of the psychoeducational intervention also clearly emerged
from the qualitative analysis because it has promoted a path of self-confidence
(“The encounters have given back a bit of lymph in being able to deal face-to-face
this kind of topic”) and it shattered prejudices about sexuality (“I understand very
well the potential of the mind and how restricted was the vision of sexuality that I
The three themes that emerged from the qualitative analysis are consistent with
those elements highlighted in the Introduction. Sexuality emerged as closely linked to
one’s own and other’s perception of the functioning and image of the body. A disabled
body has disabled sexuality . Recovering sexual health involves regaining the
image of one’s body and confidence that one can still give and receive pleasure [2, 4].
It is also clear from the qualitative analysis that stereotypes do not only concern
nondisabled people toward people with disability; they also affect the people with
disability themselves (“I was the first one to call myself asexual or disabled”) [4, 5].
Finally, the adjustments that every person with SCI must tackle to regain their sexual
health inevitably pass from the quality of social relationships (“Many people always
see only the wheelchair”), ranging from the recovery of intimacy with the partner to
trust in their own attractiveness.
Several studies [5, 9, 93–96] and guides [1, 4, 68] urge that adequate education
 and psychological support  be provided to people with SCI in order to
Psychological Sexual Health of People with Paraplegia
StefanoFederici1,2*, FrancescoArtegiani3, DanieleDiotallevi4, GiovannaCaruso1
and Alessandra CastellaniMencarelli1
1 Department of Philosophy, Social and Human Sciences and Education, University
of Perugia, Perugia, Italy
2 Myèsis, Research and Development Company, Rome, Italy
3 MenteCorpo, Clinical Center of Psychology and Sexology, Perugia, Italy
4 Independent Professional, Perugia, Italy
*Address all correspondence to: firstname.lastname@example.org
facilitate successful participation in sexual activities. These studies also highlight
the need to involve intimate partners in discussions related to sexuality during
the rehabilitative process  in an inclusive approach that gives women—in the
same way as for males—the opportunity to talk with peers with SCI about sexual
health during the initial rehabilitation and after returning home . The first and
greatest achievement of the Love & Life project was to develop, in Italy, an environ-
ment where a psychoeducational intervention could meet the needs of people with
SCI, provide adequate education and psychological support, include partners, and
create a space for peer-to-peer interaction. The intervention effectiveness also offers
strong, clear evidence of the validity of the accepted biopsychosocial model that
overcomes a reductionist view that restricts sexuality to the function/dysfunction
of genitalia, phallocentric primacy of sexual pleasure, and attractiveness of only
perfect body. We do not believe we have solved the complexity of the sexual lives of
women  and men with SCI and their partners, but we hope that the Love & Life
initiative will lead to a new way forward to address this complexity.
Conflict of interest
The authors declare that the research was conducted in the absence of any com-
mercial or financial relationships that could be construed as a potential conflict of
© 2020 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms
of the Creative Commons Attribution License (http://creativecommons.org/licenses/
by/3.0), which permits unrestricted use, distribution, and reproduction in any medium,
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