Sexual Health and Sexual Quality of Life Among Individuals With Spinal Cord Injury in Latin America

Abstract

Background

Sexual changes are an area of primary concern for individuals with spinal cord injury (SCI) and their partners, but the topic has gone largely unexplored in the research literature.

Objectives

This study examined how individuals with SCI in Latin America experience their sexuality and what issues they and their partners face in this area.

Methods

A total of 248 individuals with SCI from Latin America completed an online 60-item survey regarding sexuality.

Results

The majority of participants (87.7%) reported that they had noticed changes in sexuality after the injury, mainly physical problems (50.7%), emotional problems (38.7%), and changes in relationships with partners (27.5%). Regarding sexual desire, 47.2% indicated that desire remained the same after SCI. The majority of participants (81.9%) indicated not having received any information about sexuality after SCI during their hospital stay but reported that they would have liked to have received information (98.1%). Of all participants, 66.1% reported never having been asked about problems or difficulties in their sexual life after SCI by any health professional.

Conclusion

Interventions designed to educate individuals with SCI regarding the effect of injury on their sexual functioning, responsiveness, and expression, as well as to support them in maintaining and enhancing their sexual well-being, may be extremely beneficial, particularly in Latin America. Findings highlight the distinct need for professionals to introduce the topic of sexuality by discussing it in a straightforward, nonjudgmental manner and to integrate discussions about sex and related issues into assessment, planning, and ongoing treatment.

Spinal cord injury (SCI) is a life-altering incident that results from damage to the spinal cord after trauma, disease, or degeneration and affects an individual’s autonomic, sensory, and motor functioning.^1,2 Leading causes of SCI include motor vehicle accidents (36%–48%), violence (5%–29%), and injuries resulting from firearms or falls (17%–21%). According to the World Health Organization (WHO),³ between 250,000 and 500,000 individuals per year sustain an SCI worldwide. Although it is difficult to estimate the global prevalence of SCI, the estimated global incidence is 40 to 80 cases per million individuals. In low- and middle-income countries, individuals with SCI experience reduced survival rates.³

Quality of life (QOL) can be severely disrupted after SCI. Individuals with SCI often experience physical (e.g., bone loss, chronic pain, spasticity, difficulties with muscle extensibility), emotional (e.g., depression, anxiety, low self-esteem, stress, guilt), and interpersonal problems (e.g., isolation, decreased community participation, social disconnectedness, and marital problems).^4–7 Additionally, persons with SCI are frequently susceptible to sexual impairment and report disturbances related to sexual functioning.^8,9

Sexual changes are an area of primary concern for individuals with SCI and their partners. Even though sexuality is often an essential component of identity, it is a largely unexplored topic among individuals with SCI.¹⁰ There is a notable lack of literature on sexuality and sexual identity in individuals with SCI apart from neurological and physiological components. Previous studies have identified that improving sexual functioning is one of the most critical factors for increasing the QOL of individuals with SCI.¹¹ The term sexual dysfunction incorporates the range of physiological, psychological, and organic development of experiences such as diminished vaginal lubrication, loss of sexual interest, and erectile dysfunction.¹⁰ After SCI, individuals commonly report limited mobility, bowel and bladder dysfunction, and pain, which may influence sexuality and QOL.¹¹ Additionally, SCI-related sexual dysfunction can greatly impact interpersonal relationships. Individuals with SCI report having unsatisfying sexual activity and scarce opportunities to discuss and affirm their sexuality.¹²

During rehabilitation, individuals with SCI may often lack knowledge and resources regarding their sexual needs or concerns. The influence of insufficient sexual counseling or education as part of the rehabilitation process may be detrimental to individuals with SCI.^1,13 Previous studies have suggested that difficulties regarding sexuality after SCI continue to be a central motivating factor in an individual’s life, such that positive rehabilitative outcomes are closely tied to successful sexual rehabilitation.⁹ It has been suggested that information from health care professionals on how disability impacts sexuality may benefit individuals with physical disabilities, the large majority of whom may have intimacy and sexual needs that can be addressed in rehabilitation.

Research considering the impact of SCI on an individual’s sexual health and QOL is limited, as minimal attention has been paid to this topic. In general, sexuality is a topic that professionals often do not discuss with their patients.¹⁴ Research has shown that some professionals may feel embarrassed to discuss sexuality,¹⁴ lack confidence in their ability to address sexual concerns,¹⁵ and perceive that sexuality is a taboo or inappropriate topic to discuss with their patients.¹⁴ In addition, most health professionals have received little to no training regarding this topic.¹⁶

Little is known about sexuality issues in individuals with SCI in Latin American countries and how their sexuality is impacted after injury. The capacity to comprehensively address sexuality issues is foremost in demystifying the sexuality needs and concerns of individuals with SCI. As a result, the current study examined how individuals in Latin America experience their sexuality after SCI and what issues they and their partners face related to sexuality. This study also aimed to illuminate knowledge, attitudes, and beliefs toward sexuality and intimate relationships among individuals with SCI in Latin America and to assess the need for interventions and resources regarding sexuality after SCI.

Methods

Participants

The sample consisted of 248 individuals with SCI from Latin America. All participants met the following inclusion criteria: (a) had an SCI of any severity level, (b) were age 18 or older, (c) resided in Latin America at the time of the study, and (d) provided informed consent for participation. The sample was comprised primarily of women (n = 171; 71.0%) between 18 to 62 years of age (M = 38.6; SD = 9.9), with a mean of 13.7 years of education (SD = 5.5). Less than half of the participants reported active employment: 22.7% reported working full time (n = 55), 12.8% working an hourly position (n = 31), and 12% working part-time (n = 29). Most of the participants indicated being single (n = 116; 48.1%), without children (n = 128; 52.7%), and living with other relatives (n = 69; 27.8%). Finally, the majority (n = 212; 89.5%) identified as heterosexual. See Tables 1 and 2 for sociodemographic information and injury characteristics.

Table 1.

Sociodemographic information

	Mean	SD
What is your age? (n = 218)	38.6	9.9
Years of education (n =198)	13.7	5.5
	Frequency (n)	Percentage (%)
Gender (n = 241)
Female	171	71.0
Male	70	29.0
Work status (n = 242)
Full-time work	55	22.7
Disability pension	47	19.4
Hourly work	31	12.8
Part-time work	29	12.0
Unemployed	26	10.7
Student	23	9.5
Retirement pension	11	4.5
Homemaker	9	3.7
Sick leave	6	2.5
Volunteer work	5	2.1
Marital status (n = 241)
Single	116	48.1
Married	52	21.6
Living together without married	34	14.1
Divorced	21	8.7
Separated	17	7.1
Widowed	1	.4
Do you have children? (n = 243)
Yes	115	47.3
No	128	52.7
If yes, when did you have them? (n = 115)a
Before SCI	95	82.6
After SCI	20	17.4
Who do you currently live with? (n = 248)a
Other relatives	69	27.8
Children	56	22.6
Spouse	54	21.8
Brothers and sisters	51	20.6
Alone	42	16.9
Partner	35	14.1
Other patients from the residence / hospital	2	.8
Residential facility	2	.8

Table 1.

Sociodemographic information (cont.)

	Mean	SD
Sexual orientation (n = 237)
Heterosexual	212	89.5
I prefer not to say	12	5.1
Gay or lesbian	7	3.0
Bisexual	3	1.3
Other	3	1.3

^aMultiple response options available; responses do not add up to 100%. Percentages are calculated out the total response for each question.

Table 2.

Injury characteristics

	Range	Mean	SD
Age of injury (n = 201)	1–58	26.3	11
Time since injury (n = 201)	1–41	12.6	10.3
		Frequency (n)	Percentage (%)
How did SCI happen? (n = 240)
Trauma from vehicular accident		102	42.5
Other		84	35.0
Gunshot wound		35	14.6
Spina bifida or myelomeningocele		12	5.0
Myelitis (infections by viruses, bacteria, etc.)		5	2.1
Cancer		2	.8
Level of injury (n = 240)
Dorsal		91	37.9
Cervical		68	28.3
Lumbar		54	22.5
I don’t know		16	6.7
Sacral		11	4.6
Do you have sensitivity at the level of the anal sphincter? (n = 243)
Yes		84	34.6
No		159	65.4

Measures

Four professionals who specialized in SCI developed an online survey containing 60 questions that were categorized into six areas: (1) demographic information, (2) information received about sexuality, (3) sexual problems before and after SCI, (4) counseling and sex education, (5) couples’ sexuality, and (6) sexual rehabilitation.

Procedure

To ensure that the questions were comprehensible and relevant, two SCI professionals reviewed the survey. Following review, the final version of the survey was hosted on the online platform www.SurveyMonkey.com. The link of the survey was sent to rehabilitation professional organizations in Latin America by email and invitation letter. Then the professionals invited their patients to participate and shared the link. Additionally, an announcement about the study was posted on social media to groups of individuals with SCI. This project was approved by the ethics committee of Universidad Abierta Interamericana. Data collection began on June 3, 2021 and ended on July 5, 2021.

Data analytic plan

The survey was initiated by 353 individuals; however, data from 92 participants were removed for completing the survey in an unlikely time (e.g., <4 minutes), and another 13 were removed for not completing any of the sociodemographic questions. The final sample consisted of 248 individuals with SCI. Given that the present study was exploratory, descriptive analyses were calculated to determine the frequencies and percentages of each response. The denominator used to calculate the percentages was based on the number of individuals who answered each question, as (a) the questions were not mandatory (e.g., not all participants responded to every survey question), and (b) some questions were multiple choice. The analyses were conducted using SPSS, version 23.¹⁷

Results

Information received about sexuality

More than half of the respondents (54.3%) reported not having received any sex education prior to their SCI. Those who had received sex education indicated school (47.3%) and/or their therapist (31.3%) as their principal sources of information. Furthermore, the participants indicated that the main topics of sexual education that they have received addressed their body (74.1%), sexual and reproductive rights (69.6%), and sexual diversity (43.8%). They rated the quality of the information they had received as good in most cases (50.9%). See Table 3 for more detail.

Table 3.

Information received about sexuality

	Frequency (n)	Percentage (%)
Have you received sex education at some point in your life prior to SCI? (n = 245)
Yes	112	45.7
No	133	54.3
Who have you received the information from? (n = 112)a
School	53	47.3
Therapist	35	31.3
Other	32	28.6
Close friends	27	24.1
Family	25	22.3
You believe that the information was... (n = 112)
Excellent	22	19.6
Good	57	50.9
Regular	33	29.5
Have you received information on these topics? (n = 112)a
Taking care of your body	83	74.1
Sexual and reproductive rights	78	69.6
Sexual diversity	49	43.8
Gender	44	39.3
Affectivity	40	35.7
None	3	2.7

^aMultiple response options available; responses do not add up to 100%. Percentages are calculated out the total response for each question.

Sexual problems prior to SCI

When asked about the importance of sexuality, 56.6% (n = 137) of participants stated that it was very important, 27.3% (n = 66) important, 12.8% (n = 31) neutral, 2.9% (n = 7) less important, and 0.4% (n = 1) not important to them. The majority reported that before the injury, they had had a romantic partner (n = 184; 76.0%), had sexual relations (n = 174; 71.9%), and had not experienced sexual dysfunctions (n = 211; 87.6%).

Sexual problems after SCI

Approximately 70% of the sample stated that they had had sex after their SCI, which they rated as satisfactory (26.5%) or neutral (20.5%) on average. The majority of participants (87.7%) reported that they had noticed changes in sexuality after the injury, mainly physical problems (50.7%), emotional problems (38.7%), and changes in relationships with partners (27.5%). Regarding sexual desire, 47.2% indicated that desire had remained the same after SCI. Similarly, when asking about the ability to reach orgasm, 46.1% reported that they had noticed a change, and 41.2% reported never having had an orgasm after SCI. However, more than half of the participants stated that they had noticed that other areas were more sensitive to stimulation during arousal or orgasm (69.9%) than before the injury, and nearly three-quarters reported that they believed it was possible to experience pleasure from discovering other new erogenous zones (77.6%). A minority of the sample (30.2%) indicated no complications after sex. Finally, almost 39.8% of the sample indicated that they took medications to have sex and that these medications were largely useful (96.9%). See Table 4 for more information.

Table 4.

Sexual problems after SCI

	Frequency (n)	Percentage (%)
After SCI, have you had sex? (n = 240)
Yes	168	70.0
No	72	30.0
How satisfied are you with your sexuality after SCI? (n = 166)
Very satisfied	29	17.5
Satisfied	44	26.5
Somewhat satisfied	21	12.7
Neutral (neither satisfied, nor dissatisfied)	34	20.5
Somewhat dissatisfied	23	13.9
Dissatisfied	15	9.0
Have you noticed any change in your sexuality after SCI? (n = 162)
Yes	142	87.7
No	20	12.3
After SCI, which of the following changes or problems have affected your sexuality? (n = 168)a
Physical (e.g., motor disturbances, fatigue, dizziness, spasticity, etc.)	72	50.7
Emotional (e.g., depression, anxiety, self-esteem)	55	38.7
Relationships with a partner (e.g., separation, divorce, arguments)	39	27.5
Changing roles (e.g., dependency)	34	23.9
Side effects of medication (e.g., drowsiness, lack of sexual desire, etc.)	24	16.9
My sexuality has not been affected	20	14.1
All of the above	11	7.7
After SCI, your sex desire: (n = 163)
Has remained the same	77	47.2
Has decreased	55	33.7
Has increased	31	19.0
After SCI, do you think it is possible to get pleasure from discovering other new erogenous zones? (n = 165)
Yes	128	77.6
No	8	4.8
I don’t know	29	17.6

Table 4.

Sexual problems after SCI (cont.)

	Frequency (n)	Percentage (%)
After the SCI, have you noticed any change in your ability to have an orgasm? (n = 165)
Yes, I have noticed a change	76	46.1
I have never had an orgasm after SCI	68	41.2
No, I haven’t noticed any change	17	10.3
I have not had an orgasm in my life	4	2.4
After the SCI, have you noticed that there are other areas that are stimulated or are more sensitive than before above the level of injury, during arousal or orgasm? (n = 163)
Yes	114	69.9
No	26	16.0
I don’t know	23	14.1
After SCI, have you had any of these symptoms or complications after having sex? (n = 168) a
None present	75	30.2
Pleasant sensation in orgasm above the level of injury	37	14.9
Increased spasticity	29	11.7
Decreased spasticity	29	11.7
Pain	14	5.6
Increased blood pressure	14	5.6
Other	10	4.0
Do you take any medications to have sex? (n = 166)
Yes	66	39.8
No	100	60.2
Have these medications helped you? (n = 64)
Yes	62	96.9
No	2	3.1

^aMultiple response options available, responses do not add up to 100%. Percentages are calculated out the total response for each question.

Couples’ sexuality

Approximately half of the sample (50.9%) reported currently having a partner. Most participants denied avoiding having sex with their partner (40.9%) or thinking that their partner avoided having sex with them so as not to hurt them (56.1%). About one-quarter of the sample (23.2%) indicated having sex with their partner approximately once per week. Of the 35% of patients (n = 82) who indicated they did not have a partner, the majority (72.8%) reported that they had pursued a romantic or sexual relationship. See Table 5 for more detail.

Table 5.

Couple sexuality

	Frequency (n)	Percentage (%)
Do you currently have a partner? (n = 234)
Yes, I have a partner	119	50.9
No, I don’t have a partner	82	35.0
Casual relationship	33	14.1
After SCI, if you have no partner, have you tried to start a romantic or sexual relationship? (n = 81)
Yes	59	72.8
No	22	27.2
After SCI, how often have you had sex with your partner? (n = 151)
Once a week	35	23.2
Less than once a month	30	19.9
Biweekly	28	18.5
I don’t have sex	28	18.5
Once a month	26	17.2
Every day	4	2.6
After SCI, have you avoided having sex with your partner? (n = 149)
Never	61	40.9
Rarely	35	23.5
Sometimes	27	18.1
Usually	11	7.4
Always	15	10.1
Do you think your partner avoids having sex with you to avoid hurting you? (n = 148)
Yes	36	24.3
No	83	56.1
I don’t know	29	19.6

Counseling and sex education

The majority of participants (81.9%) indicated not having received any information about sexuality after SCI during their hospital stay and reported that they would have liked to have received information (98.1%). Moreover, 66.1% reported never having been asked about problems or difficulties in their sexual life after SCI by any health professional. Respondents reported that three ideal ways in which they would like to receive educational information related to sexuality after SCI were through an interview with a health care professional (65.3%), counseling with a sex educator or counselor (57.7%), and via audiovisual material (e.g., videos, films, audio recording; 50.8%). Respondents noted that this information would be most helpful to be received during rehabilitation (67.1%). Finally, participants reported that they would have felt most comfortable discussing issues related to sexuality after SCI with a sex therapist/sexologist (64.9%), doctor (45.2%), and/or another person with SCI (43.5%). See Table 6 for more detail.

Table 6.

Counseling and sex education

	Frequency (n)	Percentage (%)
Did you receive any information about sexuality after your SCI during your hospital stay? (n = 227)
Yes	41	18.1
No	186	81.9
Has a professional ever asked you if you have had problems or difficulties in your sexual life after SCI? (n = 227)
Yes	77	33.9
No	150	66.1
The amount of information about sexuality after SCI you received was: (n = 228)
I did not receive information	105	46.1
Little	89	39.0
Enough	21	9.2
Satisfactory	12	5.3
Too much	1	.4
If you did not receive any information, would you have liked to receive any information? (n = 105)
Yes	103	98.1
No	2	1.9
When do you think is the best time to receive information about sexuality after SCI? (n = 228)
During rehabilitation	153	67.1
At the time of hospitalization (acute phase)	16	7.0
After discharge from hospital	15	6.6
Other	13	5.7
At the time of returning home	11	4.8
Six months after returning home	10	4.4
Three months after returning home	6	2.6
I don’t think you have to talk about sex	4	1.8
For you, what would be the ideal way in which you would like to receive educational information related to sexuality after SCI? (n = 248)a
Interview with a healthcare professional	162	65.3
Counseling with a sex educator or counselor	143	57.7
Audiovisual material: videos, films, audio recording	126	50.8
Online material: website, blog, YouTube video, etc.	108	43.5
Written material: manual, book, etc.	99	39.9
Social networks (Facebook, WhatsApp, etc.)	55	22.2
Telemedicine	15	6.0
I would have preferred not to receive information	1	.4

Table 6.

Counseling and sex education (cont.)

	Frequency (n)	Percentage (%)
With which people would you have felt most comfortable talking about issues related to sexuality after SCI? (n = 248)a
Sex therapist/sexologist	161	64.9
Doctor	112	45.2
Another person with SCI	108	43.5
Psychologist	107	43.1
Educator or sexual counselor	100	40.3
The partner of a person who has suffered SCI	76	30.6
Physiotherapist	61	24.6
Occupational therapist	59	23.8
Nurse	35	14.1
Social worker	12	4.8
I prefer not to discuss the matter with anyone	3	1.2
Speech therapist	1	.4

^aMultiple response options available; responses do not add up to 100%. Percentages are calculated out the total response for each question.

Sexual rehabilitation

About 40.3% of participants reported having received outpatient rehabilitation, and 30.7% reported having received both outpatient and inpatient rehabilitation, particularly physical therapy (98.9%), occupational therapy (51.6%), and psychological therapy (46.2%). Regarding sexuality, most respondents (67.0%) stated that treating sexual problems after SCI was important to them and that they believed a professional from the rehabilitation team was the most appropriate person with whom to talk, resolve doubts, or seek solutions about issues related to sexuality (74.5%). In general, participants reported feeling reserved (54.0%), confident (27.8%), and trusting (27.0%) when talking about sexuality, regardless of the gender of the professional (69.3%). Unfortunately, most participants (76.1%) reported never having received any rehabilitation or intervention to improve their sexuality after SCI, although almost all (94.6%) indicated that they would have liked to have received such care.

When asked about how sex therapy should be approached with individuals with SCI, 60.5% indicated that interventions should be individually based, 54.0% indicated a desire for couple interventions, and 39.5% reported openness to group-level interventions. Table 7 contains the topics that, according to participants, should be addressed during sex therapy.

Table 7.

Sexual rehabilitation

	Frequency (n)	Percentage (%)
Did you receive rehabilitation? (n = 231)
Yes, outpatient rehabilitation	93	40.3
Both	71	30.7
No	38	16.5
Yes, inpatient rehabilitation	29	12.6
What kind of rehabilitation? (n = 248)a
Physical therapy	92	98.9
Occupational therapy	48	51.6
Psychological therapy	43	46.2
Family therapy	6	6.5
Psychiatric treatment	6	6.5
Sex therapy	6	6.5
Cognitive rehabilitation	2	2.2
Other	2	2.2
Do you think that a professional from the rehabilitation team is the most appropriate person with whom you can talk, resolve doubts, or seek solutions to issues related to sexuality in people with SCI? (n = 231)
Yes	172	74.5
No	59	25.5
After SCI, how do you feel about talking to a professional about sexuality? (n = 248)a
Reserved	134	54.0
Confident	69	27.8
Trusting	67	27.0
Uncomfortable	46	18.5
Ashamed	26	10.5
Fearful	21	8.5
Doubtful	14	5.6
You feel more comfortable talking about your sexuality if the professional is: (n = 231)
No gender preference	160	69.3
A woman	49	21.2
A man	22	9.5

Table 7.

Sexual rehabilitation (cont.)

	Frequency (n)	Percentage (%)
How important is treating sexual problems after SCI to you? (n = 224)
Very important	150	67.0
Important	56	25.0
Neutral	11	4.9
Less important	6	2.7
Not important	1	.4
Have you received any type of rehabilitation or intervention (workshop, program, specific consultations, medications, etc.) to improve your sexuality after your SCI? (n = 222)
Yes	53	23.9
No	169	76.1
Would you have liked to have received such rehabilitation/intervention? (n = 167)
Yes	158	94.6
No	9	5.4
How do you think sex therapy should be approached in people with SCI? (n = 248)a
Individually	150	60.5
With partner	134	54.0
As a group (with other patients who have suffered a SCI)	98	39.5
What topics do you think should be addressed during this type of therapy? (n = 248)a
How to communicate with your partner about sexuality after SCI: fears, desires, discomforts, etc.	178	71.8
Strategies that help to maintain sexual relations after SCI: postures, erotic games, self-pleasure, etc.	170	68.5
Treatment of sexual dysfunctions after SCI: problems with ejaculation, orgasms, erection, lubrication	162	65.3
Body image: how I look and feel based on this new situation, acceptance of my new corporality and its aesthetics	111	44.8
Issues related to procreation after SCI: pregnancy, contraceptive methods, etc.	102	41.1
Risk behaviors, how to have safe sex	97	39.1
Parenting related issues	59	23.8
Sexual rights and consent: the age of sexual intercourse, when, how, where and with whom to have sex	58	23.4
Other	7	2.8

^aMultiple response options available; responses do not add up to 100%. Percentages are calculated out the total response for each question.

Discussion

This study is one of the first to consider the impact of SCI on sexual health and QOL in Latin America. Because sexuality is an overlooked topic among rehabilitation and health professionals,¹⁴ the present study helps fill a major gap in the literature and suggests that sexuality is of great importance to individuals with SCI in this region.^9,11,12

The majority of individuals with SCI reported that they had not received sex education at any point prior to their SCI. The lack of comprehensive, evidence-based sexual education available to individuals in Latin America has been described in prior research, and individuals’ sexual knowledge, self-efficacy, and decision making may be negatively impacted by a lack of education.¹⁸ The individuals in the current study who reported that they had received sexual education prior to their SCI tended to report having received good quality information from apparently reputable sources (e.g., school, therapists). Because studies have found that young adults in some Latin American countries perceive sexual education courses offered by public school systems to be low quality or insufficient¹⁸ and most participants in this study reported no prior sex education, health professionals should consider how to address critical gaps in sexual education domains, including knowledge, self-efficacy, decision making, and prevention.¹⁹

A central finding of this study is that more than 80% of this sample of individuals with SCI reported that sexuality was important or very important to them, which is consistent with prior studies that found sexuality to be a critical aspect of overall QOL.^9,11 Additionally, more than two-thirds of the sample reported that they had had sexual intercourse after their SCI, underscoring the broad, consistent relevance of sexuality in the lives of individuals regardless of ability status. After SCI, most participants reported some level of sexual activity (ranging from daily to less than monthly) and either currently having a partner or pursuing a romantic or sexual relationship. Most reported that they did not avoid sex nor did they perceive that their partners avoided sex. These findings are consistent with prior research that has found many individuals desire to remain sexually active after SCI despite changes or difficulties.^20,21 These findings are also congruent with prior studies documenting that sexual activity, although altered, remains enjoyable, satisfying, and rewarding for many after SCI.²²

Despite these levels of sexual desire and activity, nearly 90% of participants reported changes to their sexuality, with half of the sample reporting physical problems, nearly 40% reporting emotional changes, and approximately one-quarter reporting changes to romantic relationships. A small portion of the sample noted the impact of medication side effects, such as lethargy or low sexual desire. These challenges to sexuality after SCI are in line with literature documenting notable changes in physical, psychological, and interpersonal functioning after injury.^9,12

Participants demonstrated openness to medical and psychoeducational interventions and desired to address challenges to improve sexual QOL, but the majority of the sample indicated that they had not received any information about sexuality after SCI during their hospital stay. Notably, nearly all respondents reported that they would have liked to have received this information. More than three-quarters of participants reported never having received any type of rehabilitation or intervention program to address sexuality after SCI. These results are consistent with prior research documenting the gap between services provided during rehabilitation and the services desired by patients related to sexuality²³ as well as the low levels of satisfaction with sexuality education during rehabilitation²⁴ due to perceived inadequacy of resources and support.²⁵

The large portion of the sample who reported not being asked by health professionals about problems or difficulties in their sexual life after SCI—approximately two-thirds of participants—suggested a significant dearth of clinical attention to sexuality issues for most patients. Moreover, the sample reported varying levels of comfort with discussing sexuality with a health professional, indicating that this may be a challenging topic to address that can be facilitated if the professional receives training on best practices for communication regarding patients’ sensitive and personal sexual issues. Prior studies have documented the difficulty in addressing sexuality in rehabilitation⁸ and the need for health professionals to consistently maintain patient privacy, be respectful and responsible, and uphold appropriate professional boundaries when working with patients, particularly in the treatment of sensitive issues.²⁶

Results suggest that interventions designed to educate individuals regarding the effect of injury on their sexual function, responsiveness, and expression and to support them in maintaining and enhancing their sexual well-being may be beneficial.²⁶ Findings also highlight the need for professionals to introduce the topic of sexuality by discussing it in a straightforward and nonjudgmental manner and to integrate discussions about sex and related issues into assessment, planning, and ongoing treatment. Providing partners and persons with SCI with age-appropriate information about sexuality that includes specific information with respect to SCI is recommended.²⁶

This study identified a great need for developing interventions responsive to the sexual rehabilitation of individuals with SCI. Participants reported that they would be open to educational and counseling interventions in the form of interviews with health care professionals, counseling interventions with sex educators or counselors, and self-guided audiovisual educational materials. They also reported that they would feel most comfortable talking about sexual issues with sex therapists, doctors, psychologists, educators, or a peer with SCI. Many indicated that a professional from the rehabilitation team would be the most appropriate person with whom to discuss sexuality after SCI, share challenges or doubts, and seek solutions to sexual issues. Participants reported a preference for sexual interventions after SCI on a range of topics, including healthy communication with partners, strategies to maintain and support sexual relations, treatment of sexual dysfunctions (e.g., problems with ejaculation, orgasms, erection, lubrication), body image, issues related to reproduction, sexual risk behaviors, parenting, and sexual rights and consent. Thus, individuals with SCI appear to be open to and interested in various interventions on topics to promote their sexuality, and they signaled a desire for a rehabilitation team to address issues comprehensively and thoroughly. Designing, implementing, and evaluating interventions that are responsive to the needs of individuals with SCI are of paramount importance and can greatly contribute to QOL after injury.⁹

Limitations and Future Directions

Findings should be interpreted considering several limitations. This study was designed to be descriptive and exploratory, so hypotheses or inferential statistics were not used. Future studies could consider testing what factors are associated with a positive sense of sexuality after SCI and what kinds of interventions may be most beneficial for individuals with SCI. The present sample was recruited using nonrandom sampling (e.g., snowball sampling); as such, results cannot be generalized to all individuals with SCI in Latin America. Additionally, the online nature of this study likely excluded individuals with SCI without access to technology and a stable internet connection; as such, individuals with SCI of a lower socioeconomic status were probably less likely to participate in this study. Finally, no information was collected on the country of origin of the participants; therefore, comparative analyses between countries could not be carried out. There are cultural differences that can influence participants’ response patterns. Similarly, future related studies would benefit from examining whether response patterns regarding sexuality after SCI differ as a function of sex, gender, socioeconomic status, race, ethnicity, sexual orientation, or age. Such exploratory approaches would benefit from concrete, a priori hypotheses derived from the literature about the direction of effects and proper alpha corrections to control for family-wise error. Doing so could help bring nuance to the general patterns of results found in the current study.

Conclusion

This study was a novel investigation of the impact of SCI on sexual health and QOL among individuals with SCI in Latin America. Results revealed that most individuals with SCI had not received any interventions to address sexuality after their injury, despite endorsing sexuality as being important to their QOL, demonstrating sexual difficulties that merit clinical attention, and being interested in receiving such interventions. Findings underscored the needs and preferences of individuals with SCI after injury regarding sexuality and can inform the development, implementation, and evaluation of interventions to address these critical concerns.

Funding Statement

Financial Support Dr. Melissa M. Ertl was supported by award number T32 MH019139 (Principal Investigator, Theodorus Sandfort, PhD) from the National Institute of Mental Health. The content of this work is solely the responsibility of the authors and does not necessarily represent the official views of National Institute of Mental Health or the National Institutes of Health. D. Ramos Usuga was supported by a predoctoral fellowship from the Basque Government (PRE_2019_1_0164).