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Talking about post-injury sexual functioning: The views of people with spinal cord injuries — A qualitative interview study

Aim: This study aimed to explore perceptions of people with spinal cord injuries regarding the information they received during their rehabilitation programme on post-injury sexual functioning. Background: Spinal cord injury is a traumatic, life-altering event that is associated with loss of motor and sensory function and sexual impairment. Existing evidence suggests that sexual issues are poorly handled during the rehabilitation phase of the patient's journey. Design: A descriptive qualitative design was utilized in this study. Methods: Twenty-nine people with spinal cord injury participated in qualitative in-depth interviews between November 2017 and April 2018, and data were analysed using the Burnard (1991, https://doi.org/10.1016/0260-6917(91)90009-y) thematic analysis framework. Results: Some participants indicated they were sexually inactive prior to their spinal cord injury. They testified that they had not received information on post-injury sexual functioning. Many participants who received post-injury information on sexual functioning reported dissatisfaction with the content and timing of this information. Conclusion: Personal conversations between spinal cord injured patients and dedicated members of the interdisciplinary health team can enhance the quality of rehabilitation care and patients' satisfaction with rehabilitation care. Nurses are central clinicians in the rehabilitation programme of spinal cord injured patients and should engage in individually designed conversations about post-injury sexual functioning.

• Sexual health issues are considered important aspects of holistic care but are not routinely addressed in health-care settings.
• Spinal cord injuries units provide rehabilitation for people with spinal cord injuries.
What this paper adds?
• There are multiple barriers to providing high-quality information on sexual functioning within the rehabilitation setting, associated with personal, clinician and systems-related factors.
• Determinations regarding individualized plans for sexual health conversations must be collaborative with the patients and possibly their family members, considering the individual views of patients regarding the best timing, content and most appropriate method for such interventions.
• The experiences and views of people with spinal cord injury are diverse and probably culturally dependent, and there are inherent risks associated with stereotypical attitudes to sexual behaviour and age.
The implications of this paper: • Spinal cord rehabilitation services must respond to the identified unmet needs of people with spinal cord injury regarding education on sexual functioning.
• Multidisciplinary teams that utilize a holistic approach designed collaboratively with the individual with spinal cord injury will have the best potential for success.
• To be able to successfully realize rehabilitation standards, clinicians must be immersed in techniques and strategies that motivate and guide them in discussing sexual functioning and other sexual health-related issues.

| INTRODUCTION
The World Health Organization (2013) defined spinal cord injury (SCI) as damage to the spinal cord resulting from trauma, disease or degeneration. The annual global incidence of SCI has been estimated at between 250 000 and 500 000, of which approximately 55% are traumatic (Donovan et al., 2017). It is estimated that 50 000 people are living with SCI in the United Kingdom (Spinal Injuries Association, 2020).
SCI is a traumatic, life-altering event that is often associated with loss of motor and sensory function as well as sexual impairment (Choi et al., 2015). Individuals are faced with devastating loss and an abundance of new information that can cause extreme stress and anxiety (Hess & Hough, 2012). Literature suggests that concerns associated with sexual functioning are poorly handled during the rehabilitation phase of the patient's journey (Donovan et al., 2017), and although sexual functioning is an important aspect of holistic care (Bodner, 2011), it is not routinely (Gianotten et al., 2006) nor adequately (Evans, 2013;New & Currie, 2016) addressed in healthcare settings.
People with SCI are faced with a lengthy rehabilitation process with life-changing physical adaptations imposed by the injury. While initially reliant on clinicians within an unfamiliar hospital environment, a prolonged rehabilitation phase supported by family and professional carers in their own homes or other rehabilitation settings ensues.
Rehabilitation aims to minimize disabilities and assist individuals to work towards recovery of activities and maximum participation in society. Although sexuality is acknowledged as a key domain in health that is important for well-being and quality of life, many rehabilitation professionals find sexual issues difficult to address with patients (Simpson et al., 2012).
Awareness of sexual functioning issues in people with SCI increased in the 2000s and is reinforced by publications emphasizing the importance of sexual function as a component of the individual's rehabilitation process (Hartshorn et al., 2013). Individual injury-related and personal factors combine with clinicianassociated and health-care systemic factors to influence post-injury adjustment to sexual functioning. Barriers to the provision of education on sexual functioning include limited staff knowledge and skills, staff discomfort, cultural issues and perceptions of clinicians that the expertise lies somewhere else (Choi et al., 2015;Julia & Othman, 2011;Othman & Engkasan, 2011;Parker & Yau, 2012).
Education on sexual functioning (such as genital arousal, ejaculation and orgasm) should be integral to the rehabilitation programme as maintaining a healthy sex life after SCI is important to many individuals (Hartshorn et al., 2013;Othman & Engkasan, 2011;Saif et al., 2013).
SCI impacts the sexuality of men and women differently. In men, erectile dysfunction and infertility have merited considerable attention in the literature (Spinal Injuries Association, 2014). As women's ability to become pregnant and deliver a child is largely unaffected following SCI, other aspects of women's sexual functioning are often assumed unaffected and resulting in less focus on research into women's compared with men's sexual functioning after SCI (Celik et al., 2014;Cramp et al., 2015;Iezzoni et al., 2015;Singh & Sharma, 2005).
It is recommended that effective and holistic rehabilitation is best provided within specialist centres that aim to care for and support people to live a fulfilled and independent life (National Health Service, 2015). NHS England (2014)

| Aim
The aim of this study was to explore perceptions of people with spinal cord injuries about the information they received during their rehabilitation programme on post-injury sexual functioning.

| Design
A descriptive qualitative design was chosen. 'The goal of qualitative descriptive studies is a comprehensive summarization, in everyday terms, of specific events experienced by individuals or groups of individuals' (Lambert & Lambert, 2012) and can improve our understanding of human beliefs, perceptions, motivations, intentions and behaviours (Parahoo, 2014). The methodology is presented in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al., 2007) (Table 1).

| Participants
The study was conducted at a single centre SCI Unit in Northern Ireland that provides intensive rehabilitation for people with SCI. The unit covers a population of 1.8 million people. To be included, participants • had to have an SCI; • be minimum 18 years old; • have participated in the centre's rehabilitation programme; and • deemed medically fit to participate in the study by their consultant.
Participants were excluded if they were unavailable during the data collection period. A total population purposive sampling approach was implemented, commonly used when the population is small or difficult to access (Etikan et al., 2016). were used by the interviewer when required. Rigour of the data collection process was enhanced as interviews were audio recorded and a reflexive diary was employed. Validation of findings were assured as transcripts were returned to participants for comments or corrections, and themes were agreed within the research team. The voice of participants is clearly heard in Section 3 where multiple direct quotations from participants are used to illustrate their views.

| Ethical considerations
All participants were given a participant information sheet and a consent form. A date and time for the interview were arranged with individuals who consented. The study was approved by a UK National Health Service research ethics committee, a university research ethics filter committee and the Research Governance Department at the participating health and social care trust.
T A B L E 1 COREQ checklist (Tong et al., 2007)  All participants knew the researcher was the ward sister and that she was doing her MSc. This was explained in the participant information sheet and invitation letter also Interviewer characteristics The interviewer was the ward sister on the spinal unit and had a key interest in the topic and was the instigator of the study and refined the focus

Domain 2: Study design
Theoretical framework

Methodological orientation and theory
The methodological orientation was underpinned by a descriptive qualitative, exploratory philosophy and the Burnard (1991)

| I'm happy enough
Some participants reported that receiving information on sexual functioning was not a priority for them during rehabilitation and they had no interest in discussing these issues; other needs were more 3.4 | One-to-one, face to face, is the best way to go Most participants affirmed that one-to-one discussions with a nurse was their preferred method of receiving information on sexual functioning.
One-to-one, face to face is the best way to go. (Male

Patient C)
The only way to discuss that sort of thing would be in private, with a nurse probably. (Female Patient D) Other participants indicated they would prefer group sessions as they would feel less embarrassed discussing such issues within a group; they could simply listen and hope that someone else would ask the questions they wanted answered. The least preferred times to present information on sexual functioning was during the medical ward rounds or as part of family meetings, with participants citing their own or their partner's embarrassment.
One-to-one talk would be less awkward than on the ward rounds with all the student nurses or medical students-it doesn't make you feel comfortable. I

| DISCUSSION
This study aimed to explore the views of people with SCI on the education on sexual functioning they received during their rehabilitation programme. Key findings suggest that many (but not all) people with SCI believe that information on sexual function post-injury is important, best facilitated through one-to-one personal discussions between the person with SCI and a professional. Our respondents have confirmed that information on post-injury sexual function is not systemized within the rehabilitation programme but is sporadic and contingent on particular professionals and other key workers with a particular interest in such information provision.
The people in this study who were sexually inactive prior to their SCI due to marital status, age or pre-existing illness suggested that are of paramount importance to people with SCI and should be treated as a priority during rehabilitation (Abramson et al., 2007;Hartshorn et al., 2013). In our study, such views were offered by participants who were sexually active prior to their injury, validating that sexual functioning was important to them, and many actively sought information on sexual functioning. Discussions about sexual functioning (and other aspects of sexual life) appear to be neglected by multidisciplinary rehabilitation teams within spinal rehabilitation centres (Burch, 2008;Fritz et al., 2015).
The timing of the provision of information on sexual functioning has received considerable attention in the literature, much of this literature advocating that such information should be introduced during the inpatient acute rehabilitation stage of the patient's journey (Saif et al., 2013). However, the discrepancy in our respondents' views regarding best timing for this education is also reflected in the literature (Fritz et al., 2015). Not all individuals are ready to embrace information on sexual functioning during inpatient rehabilitation, in which critical needs such as mobility, hypothesized to belonging to physiological needs in Maslow's model, take priority (Moreno et al., 2017). For these individuals, sexual educational needs, matching love and belonging needs in Maslow's model, could be better situated within their outpatient review appointments (Abramson et al., 2007;Hess & Hough, 2012). This is indeed reflected in some of our respondents' narrative. Other literature recommends a 6-month post-injury time frame for information on sexual functioning; nevertheless, the challenge for clinicians is to appreciate how individuals' needs change over time so that each individual's preferred time for education on sexual functioning is ascertained and addressed appropriately (Moreno et al., 2017). Some participants in our study indicated that they wanted information on sexual functioning introduced during their inpatient rehabilitation and further enhanced at their subsequent outpatient appointments. Existing evidence suggests that a majority of people with SCI do not receive sexual functioning education at any stage during or after their acute rehabilitation (inpatient) programme (Burch, 2008). Our study adds to existing evidence by recommending individualized exposure to key sexual functioning messages during inpatient rehabilitation with detailed follow-up during clinic appointments (Lombardi et al., 2010).
Existing evidence has testified that people with SCI report poor satisfaction with the provision of information on sexual functioning within rehabilitation programmes (New et al., 2016), and some participants in our study corroborate this dissatisfaction. Poor quality information provision can have devastating effects on people's marriage and sexual relationships (Abramson et al., 2007;Consortium for Spinal Cord Medicine, 2010;Evans, 2013;Gianotten et al., 2006).
In our study, many respondents reported satisfaction with information provided, confirming that needs prioritization is highly individual amongst people with SCI. Person-centred interventions must reflect the different needs between men and women (Hartshorn et al., 2013;Stoffel et al., 2018;Tong et al., 2007) and also between people with traumatic versus non-traumatic SCI (Moreno et al., 2017). As the quality of programmes on education on sexual functioning and the regularity of their implementation are so inconsistent, rehabilitation services' ability and capacity to respond to such evolution of sexual needs require thorough scrutiny and evaluation.
The detrimental effects of SCI can reduce quality of life by changing or restricting frequency and content of sexual functioning (Pakpour et al., 2016

| Study limitations
The arguments presented in this discussion must be interpreted within the limitations of the study. The data were collected from a single centre within one region of the United Kingdom, with participants embedded in the cultural and religious norms of this region, which potentially reduces transferability to other regions of the United Kingdom and other countries in the world. As all participants had been treated by clinicians at the spinal centre and participated in the centre's rehabilitation programme, participants may have felt a moral obligation to provide more positive, or at least less negative, views than those representing their true feelings. The initial reluctance by respondents to provide detailed responses during interviews may be an indication of this. As such, it was difficult to ascertain if data saturation occurred.

| CONCLUSION
Our study confirms that high-quality education on sexual functioning is not consistently provided to people with SCI. Satisfaction from people with SCI is variable, but there is evidence of good quality interventions provided by individual rehabilitation team members that were highly rated by individuals. Determinations regarding individualized plans for sexual functioning conversations must be collaborative with individuals and, in some cases, their family members, considering the individual's views about the best timing, content and method for such interventions. Sexual functioning conversations should be undertaken by clinicians trained for such conversations, while acknowledging personal and cultural factors that may inhibit or enhance the quality of such conversations. There are multiple barriers to providing high-quality information on sexual functioning within the rehabilitation setting, associated with personal, clinician and systems-related factors. The experiences and views of people with SCI are diverse and probably culturally dependent, and there are inherent risks associated with stereotypical attitudes to sexual behaviour and age, which may create considerable challenges to educational programmes that aim to inform and support normalization of sexual activities for people living with SCI.
Spinal cord rehabilitation services must respond to the identified unmet needs of people with SCI regarding education on sexual functioning. Rehabilitation is an essential component of quality health-care services and is an investment for the future with benefits for individuals and society alike.
Considering our findings in the context of existing research, it is concluded that co-designed educational plans between clinicians, immersed in techniques and strategies that motivate and guide them in discussing sexual functioning and other sexual health-related issues, and the person with SCI may have the greatest potential for success.
Such rehabilitation plans may be realized through the implementation of culturally sensitive, evidence informed conversations.