Sexual Health Table 27: Sexual Education and Counselling for SCI Patients

 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, 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.

Valtonen et al. 2006;

Sweden

Observational (survey)

N=231 (190 SCI)

Demographics: 190 adults with SCI (144 M, 46 F) and 41 persons with menigomyelocele (MMC); SCI subjects: 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 subjects 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.

Schopp et al. 2002;

USA

Pre-post

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. Short-Form-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)

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)

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.
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