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. 1993; McAlonan 1996; Tepper 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 |
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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. |
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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. |
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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). |
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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. |
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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. |
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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. |
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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. |
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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. |
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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. 1992; Valtonen 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.