See All Evidence Sections
Sexual and Reproductive Health

Sexual Education and Counselling for SCI Patients

Sexual rehabilitation is recognized as an important component of the overall rehabilitation program for patients with SCI; however, retrospective studies identify a gap between services desired by patients and the services actually provided (White et al. 1993McAlonan 1996Tepper 1999). As far back as 1982, Schuler compared five sexual rehab programs for persons with SCI, and urged clinicians to evaluate the sexual rehab services provided (Schuler 1982). While the ideal timing for sexual education for SCI patients has not been determined, Fisher et al. (2002) showed a significant increase in sexual activity between discharge from inpatient rehabilitation and 6-months later, and they suggested that the first 6 months post-discharge are optimal for sexual health interventions.

Author Year; Country
Score
Research Design
Total Sample Size
Methods Outcome
Pebdani et al. 2013; USA
Longitudinal Study (part of
bigger study)
Level 2
N=253
Population: 253 individuals consisting of 159
males (mean age 48.74±14.81 years) and 94
females (44.32±13.12 years); years since
diagnosis males 13.75±10.53 years, females
12.79±9.63 years; level of injury C1-S5.
Treatment: None
Outcome Measures: Questions regarding
family planning, the effect of SCI on family
planning, where they received advice and
information about SCI and pregnancy, SCI
and fertility, and attitudes towards having
children.
  1. Approximately 50% were diagnosed with SCI prior to family planning.
  2. Over half of the women in the sample had not spoken with a physician about SCI and pregnancy.
  3. 60% of the women in the sample had been pregnant at some point in their lives.
  4. Half of the men had fathered a child.
  5. 13.4% reported that fertility issues had been discussed with a fertility specialist.
  6. 7.1% reported that they or their partner had taken part in an infertility evaluation.
  7. 4.3% reported that either they or their partner had received fertility treatment.
  8. 2 women and 1 man reported that they or their partner had an abortion partially because of their SCI
Hess et al. 2007; USA
Pre-post
N=4
Demographics: 4 men with SCI; age range
35-55 yrs; time since injury 10-23 yrs; 3 with
traumatic SCI, 1 with transverse myelitis; All
with paraplegia: 2 complete, 2 incomplete
(AIS B and AIS C).
Methods: Patients referred to an outpatient
SCI sexuality program and seen by an
interdisciplinary team (nurse, physician, and
psychologist); completed a pre-evaluation
questionnaire and post-evaluation clinic visit
questionnaire regarding their satisfaction with
both sexual function and the clinic
experience.
Outcome Measures: pre- and post-visit
satisfaction with sexual function and clinic
experience.
  1. Patients were very satisfied with their clinic experience. All stated they would recommend the clinic to others and would themselves return with new issues regarding their sexuality.
  2. Despite patients’ reporting insufficient knowledge about sexual function, all rated their clinic visit positively, and felt their questions had been answered and their emotional wellbeing appropriately addressed in a respectful environment.
Schopp et al. 2002; USA
Pre-post
Level 4
N=28
Demographics: 28 women with SCI; mean
age 40 yrs, range 17-59.
Methods: Participants accessing
comprehensive gynaecologic and
reproductive health care services at a SCI
women’s health clinic; surveyed immediately
prior to 1st clinic visit, and at 3- and 12-month
follow-ups; participants mailed a set of
baseline questionnaires approx. 3 weeks
before their scheduled exam date;
subsequent assessments conducted by
phone and mail.
Outcome Measures: measures of health promoting behaviours (breast self-exams,
exercise, reducing fat intake, increasing fibre
intake and mammography); SCI-adapted
General Health subscale of the US. ShortForm-36 (SF-36); Satisfaction with Life Scale
(SWLS); Brief Symptom Inventory (BSI).
  1. With exception of exercise, frequencies of health promoting behaviours increased across the 3 time periods.
  2. Trend toward increased willingness to engage in monthly breast self exams from baseline to 3 months, and trend toward increased willingness to receive a mammogram between baseline and 12 month follow-up.
Cushman 1998; USA
Observational
(questionnaire)
Level 5
N=50 (25 SCI)
Demographics: 50 patients who had
participated in an inpatient rehab program; 25
SCI (16 M 9 F); mean(SD) age 41.8(20.8) yrs,
range 16-74; mean time since injury 126.1
days; mean time in inpatient rehab 85.5 days.
Methods: SCI patients were involved in a
nursing education program, which included a
group-oriented information sharing session
and written information as part of a self-instruction program. Information presented
centred on physiological aspects of sexual
functioning, also included body image and
attitudes regarding sexuality.
Outcome measures: patient perceptions of
sexual information and support provided.
  1. 80% of SCI respondents felt access to information about sexuality was available to them.
  2. 72% of SCI patients felt the amount of information or discussion about sexuality they received was sufficient.
  3. 36% reported having received or reviewed written materials regarding sexuality.
  4. 52% indicated that someone had volunteered information regarding sexuality to them.
Charlifue et al. 1992; USA
Observational (survey)
Level 5
N=231
Demographics: 231 women with SCI; mean
age 32.7 yrs; mean age at injury 21.5 yrs; 112
quadriplegic (72% complete), 119 paraplegic
(77% complete).
Methods: Women who had initial rehab at a
hospital centre in Colorado contacted by
phone to participate in a comprehensive
survey that examined demographic
characteristics, menstrual and female hygiene
history, pregnancy and child bearing, and
sexuality.
Outcome measures: sexual health needs,
concerns, and support.
  1. Over half the women reported the sexuality information provided for them during rehab was inadequate; however those whose rehab was after 1977 had higher levels of satisfaction (coincided with the establishment of a weekly women’s group at the treatment centre).
New et al. 2016; Australia
Mixed methods
comprehensive survey &
semi structured interviews
Level 5
N = 152
Population: 152 individuals; 115 with
traumatic SCI and 37 with non-traumatic
spinal cord dysfunction (SCDys). Those with
SCI were more likely to be male (72%),
younger (median age 46) and have
tetraplegia (48%) compared with those with
SCDys (male=49%, P=0.008; median age
58). Median time since onset of spinal cord
damage was 11 years. Most (95%)
respondents were exclusively heterosexual,
and 5% were gay, lesbian or bisexual.
Treatment: None
Outcome Measures: Demographic
information, as well as questions regarding
education participants received during their
initial inpatient admission and the
consequences of spinal cord damage for their
sexuality.
  1. There was no difference between SCI and SCDys regarding satisfaction or preferred modes of presentation.
  2. People with SCDys were less likely to report receiving sexuality education during rehabilitation (SCDys n=11, 30%; SCI n=61, 53%; P=0.03). Interviews suggested that this may be gendered, as only two women recalled receiving sexual education, whereas men often received this as part of continence management.
  3. Only 18% were satisfied or very satisfied with sexual education and information received, and 36% were dissatisfied or very dissatisfied.
  4. Preferred modes for receiving sexuality information included sexuality counsellor, recommended internet sites, peer support workers, staff discussion, written information and DVD.
Choi et al. 2015;
Korea
Cross-sectional Survey
Level 5
N=139
Population: 139 men (mean age=43.3 years,
age range=16-69) with motor-complete spinal
cord injuries (mean time since
injury=14.4±7.7 years).
Treatment: None
Outcome Measures: sexuality, sexual
satisfaction, socioeconomic factors, medical
conditions, rehabilitation services.
  1. 90 participants (65%) were sexually active.
  2. A period of 21-25 years since injury, compared to 5 years since injury, and experience with sexual rehabilitation education was positively associated with sexual activity.
  3. Among the group that was sexually active, 8 (8.9%) were sexually satisfied, and 56 (62.2%) were sexually unsatisfied.
  4. Lower levels of education were significantly correlated with sexual dissatisfaction.
Valtonen et al. 2006; Sweden
Observational (survey)
Level 5
N=231 (190 SCI)
Demographics: 190 adults with SCI (144 M,
46 F) and 41 persons with menigomyelocele
(MMC); SCI participants: mean age 46.6 yrs,
range 21.8-74.2; Level of injury: 87 cervical,
60 thoracic, 39 lumbar/sacral.
Methods: mail-out questionnaire on aspects
of health and functioning. All SCI participants
had been treated in the Spinal Injuries Unit in
a university hospital in Goteborg, Sweden.
Outcome measures: satisfaction with sexual
life, self-assessed sufficiency of sexual counselling.
  1. 69% of men and 59% of women with SCI reported that they had received enough sexual counselling.
  2. Those who reported the amount of sexual counselling as sufficient showed higher satisfaction with their sexual life than the others.
  3. In all subgroups, those who considered the sexual counselling they had received as sufficient were more satisfied with their sexual life than the others.

Discussion

Surveys of people who have completed rehabilitation after SCI have expressed a need for more education and counselling on sexual health concerns. Some recent research reported that few people with SCI receive information, are satisfied with the levels of education about pregnancy or sexual health, and that most expect medical staff to start the conversation about sexuality rather than having to initiate it (New et al. 2016; Celik et al. 2014).

There are only two pre-post studies that have evaluated a specific sexual health program after SCI. In Hess et al. (2007), four men received an outpatient SCI sexuality program staffed by an interdisciplinary team; they rated their visits as positive, but analysis of sexual satisfaction or knowledge was not done (i.e. level 5 evidence). Schopp et al. (2002) investigated the effect of comprehensive gynecologic services on the health behaviour of women with SCI. The authors note a trend towards desired behavioural improvement in one outcome measured, namely, increased willingness to receive a mammogram. The other outcome measure (adoption of health-promoting behaviours) was not shown to change.

Observational studies suggest that those who receive sexual counselling or educational services may have higher levels of sexual satisfaction (Charlifue et al. 1992Valtonen et al. 2006). In addition to physical challenges, SCI can alter a person’s sexual identity and sexual self-esteem, further complicating a person’s efforts to date potential partners or develop new intimate relationships (Fritz et al. 2015).

Conclusion

There is level 5 evidence (Hess et al. 2007) that a sexual health program may be positively received by patients with SCI.

There is level 4 evidence (Schopp et al. 2002) which suggests that comprehensive gynecologic services may improve women’s health behaviours.

Related Downloads
Outcome Measures
Related Toolkits
Related Videos