In the UK approximately 1200 people sustain a spinal cord injury every year, adding to the 40 000 people already living with a spinal cord injury (Liu et al, 2014).
Provision of information and education is an essential part of rehabilitation in order for the patient to understand their spinal cord injury and how it affects their body. Providing patients with a firm foundation of knowledge should reduce the risk of post-injury complications, enabling the individual to have a fulfilling life (Thietje et al, 2011). Kesänen et al (2014) concurred, suggesting that having health knowledge enables a patient to take control and responsibility for their health-related issues. A large-scale cross-sectional study with 350 respondents from four European countries identified sexual activity as the most significant unmet educational need for individuals with a spinal cord injury (Elliott et al, 2017).
Ensuring that spinal cord injury patients receive information and education on sexuality and intimacy is essential, as these factors are linked with quality of life and wellbeing (Fritz et al, 2015). Spinal cord injury can result in complex and confusing changes to sexual function (New et al, 2016).
According to the World Health Organization, a current working definition of sexual health is:
‘A state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.’
Providing information during rehabilitation is vital to address the changes that have occurred and discuss possible strategies to help people adapt (Rodger and Bench, 2019). The challenge is to develop and implement methods that enable all patients to manage and process the information they need in the best way possible (Kesänen et al, 2014).
This article evaluates the introduction of sex education sessions provided to people with a spinal cord injury in the London Spinal Cord Injury Centre (LSCIC). A previous service evaluation revealed a need for better provision of information regarding sexual function and more education (Rodger and Bench, 2019). To address this issue the LSCIC set up small same-sex group sessions (comprising one to three patients). Where possible, patients attended groups with other patients of similar age and injury level, although this was not always feasible due to inpatient demographics at the time the group was held. The confidential sessions were facilitated only by the spinal cord injury sexual function nurse specialist. In addition to this new service, couples counselling on relationships after spinal cord injury was offered as were one-to-one sessions where advice was given about the ‘mechanics’ of sex following spinal cord injury, which might include medications, devices and so on. To address different learning styles, a leaflet was also designed and approved by the LSCIC multidisciplinary team and included in the patient education information pack, informing them of the services available, how to access them and directing them to an online information source.
Study aim
The aim of the study was to explore patients' views on the new sexual function information and education service established at the LSCIC, Royal National Orthopaedic Hospital.
Method
A service evaluation approach was taken to address the study aim. A patient survey was undertaken as it was thought this would provide a greater depth of insight into the factors that contribute to and detract from quality of life following spinal cord injury (Whalley Hammel, 2007). The local research and innovation centre approved the project and confirmed that ethical approval was not required.
Patients were invited to complete a locally designed paper questionnaire following the group session, which asked them to rate the session using a Likert scale of 1–5 (0 being not useful and 5 being very useful) and provided additional space to add free text comments. The free text questions included are given in Box 1. Descriptive statistics (frequencies and percentages) were used to describe the sample and to report the quantitative data. Free text comments were collated to identify key points. Using the principles of thematic analysis, the data were read through in detail and collated into themes. Thematic analysis offers a practical approach to qualitative research when undertaking research in the practice arena (Braun and Clarke, 2014).
A leaflet about the new service was also designed and given to patients as part of their written information provision.
Results
A total of 30 patients attended a sexual function education/information session between July 2018 and September 2018 and 73% of patients (n=22) agreed to participate in the study. Help to complete the survey was offered to patients with a high-level spinal cord injury by a senior healthcare assistant who was not involved in the planning or delivery of the sessions.
Participants included 8 female and 14 male patients. No other demographic data were collected. The mean overall score for the session was 4.4 out of 5, with scores ranging from 3 to 5.
All patients except two reported that they liked the open forum. The patients who did not like the open forum were offered an individual session. Free text comments included ‘liked same sex groups’ and ‘it was helpful to know other patients had similar questions’. All participants felt it was useful session to attend; this was supported by comments such as:
‘Having other people there sharing same problems set realistic expectations.’
‘[Useful to have] other people's experiences and advice.’
‘Open and realistic—no question a bad question.’
‘Nurse had great knowledge of subject and conversation led naturally.’
Sixteen participants felt nothing could be done to improve the session, with one participant commenting that they ‘wished it happened more often’. However, some participants found the session less useful, with comments such as:
‘The room was not big enough.’
‘It was aimed at people with a more severe injury.’
‘I left feeling a bit hopeless.’
One participant was concerned by the:
‘Difference in age and function of participants.’
When asked how the service could be improved, 12 participants provided comments, which were amalgamated into three key areas: timing of sessions, information provided and session structure (Table 1).
| Theme | Supporting comments |
|---|---|
| Timing of sessions | ‘Wish session happened earlier in stay’ |
| Information provided | ‘Not specific enough’ |
| Session structure | ‘Perhaps more structure, longer too’ |
Participants commented that they would like more information on the following topics:
Twenty-one participants (95%) said they would recommend the session to other patients. Supporting comments included:
‘[Session] should be on offer, not have to ask for it’
‘Would definitely recommend—nurse was awesome and I will remember what she said. I have already talked to my husband about it and made progress.’
Discussion
The aim of this study was to collate patients' views on the newly established sexual function sessions introduced for patients following a spinal cord injury at the LSCIC. Although the results indicate that patients were generally happy with the session they attended, a number of points relating to its provision were identified. Addressing these points and making relevant changes to current provision should enable patients to be better informed and supported on the issue of sexual function and relationships following a spinal cord injury. It is widely documented in the literature that there is a lack of education on sexual function for patients during rehabilitation, resulting in an unmet need (Elliott et al, 2017). Findings from this evaluation support this, with patients reporting that they wished the session had happened at an earlier point in their rehabilitation and wanted to attend the session more than once during the admission.
Recognised barriers for giving information/education on sexual function include staff awkwardness and limited knowledge, poor communication skills and fear of upsetting the patient (New et al, 2016; Elliot et al, 2017). Couple this with patients' embarrassment about how and with whom to initiate a conversation and it is easy to see why this need is unmet (Elliot et al, 2017). Patients often wait for healthcare providers to initiate conversations about sexual function and, in waiting, miss opportunities to start a conversation (Pieters et al, 2018). A review by Eglseder and Webb (2018) found that although the literature validates the importance of sexuality after onset of disability, there is variability in the education provided related to this topic.
The results of this service evaluation suggest that people prefer the gender-specific group format. This is vitally important so that patients feel safe to discuss sensitive subject matter without embarrassment, especially for women (Thrussell et al, 2018). The evaluation also highlighted that the needs of men and women differ, which supports the use of separate groups. Men want more information on erections, medication and ‘practical’ advice. Following spinal cord injury, most men experience severe impairments in their reproductive and sexual functioning due to erectile and/or ejaculatory dysfunction and an injury-related low sperm condition (Sinha et al, 2017).
The format of education needs to be considered so that all patients get the information they require (van Wyk et al, 2015) therefore careful consideration must be given to who leads the group. The results indicated that patients value having a specialist nurse who can make them feel at ease. A health professional with experience and knowledge is required so as to support the patients and enable them to ask questions and get the information they want. Many detrimental myths and misconceptions can be promoted by enthusiastic but untrained health professionals (Elliot et al, 2017).
Signposting by healthcare staff also needs to be robust as patients may initiate a conversation with a member of the healthcare team who does not have sufficient knowledge of this specialist subject but can reassure the patient and direct them to a more appropriate health professional (Thrussell et al, 2018). Thrussell et al's (2018) UK study found that women wanted health professionals to be approachable and knowledgeable but found that they were too embarrassed to discuss sex and unable to signpost them to information and support.
Peer-supported patient education is well documented (van Wyk et al, 2015). Patients find that speaking to somebody with a lived experience of a spinal cord injury is very worthwhile and this is also true for sexual function education (Elliott et al, 2017). At present, this is not something included in the group sessions and was not highlighted as a need through this evaluation, although patients did report that they liked sharing information and questions with other inpatients.
One of the reasons why the session was less useful for some was being with others who had different levels of injury and different needs. This highlights the need for careful planning and timetabling of sessions so that everyone's needs are met as individuals. Education should be tailored to the patient's needs as they process the extent of their spinal cord injury (Hess and Hough, 2012). The follow up of patients and the accessibility of information following discharge is also essential (Aikman et al, 2018). Shorter admissions, along with the patient's ability to absorb education and information while trying to come to terms with their injuries, means they might not want the information immediately but still need access to appropriate support at a time that is right for them (van Wyk et al, 2015).
For patients who do not feel comfortable attending a group session, or do not want to speak to a health professional about sexual function during inpatient rehabilitation, it is vital to have other sources of information available (Delparte et al, 2014). Leaflets are one of the preferred formats for information delivery after the internet (Delparte et al, 2014). Health professionals who are new to the department or to spinal cord injury nursing can also benefit from reading the leaflet to gain a greater understanding of the topic, services offered and where to signpost patients. However, leaflets must be periodically reviewed and revised in line with evidence-based practice (Delparte et al, 2014).
Discussion groups for partners was also highlighted as a need and reflected in the research by Thrussell et al (2018), who suggested partner counselling should be provided in order to help both parties adapt to life after spinal cord injury. The need for greater family support, involvement and education from the onset is crucial as spinal cord injury has a considerable impact on a family unit (Lynch and Cahalan, 2017). This study highlights that accessible high-quality education on post-injury sexual function in a variety of formats is a dominant need for patients, reflecting current literature.
Recommendations
Based on the results of this service evaluation the following recommendations have been made:
Limitations
This single-site service evaluation is limited in scope and lacks generalisability. The small sample group should be noted as not all patients who attended the group session completed the evaluation. In addition, thematic analysis was not possible owing to the limited number of free text comments.
Conclusion
The aim of this study was to evaluate a new information and education session on sexual function following spinal cord injury. The study found that the sessions were well received. Provision of high-quality education/information on this subject is essential to enable individuals with a spinal cord injury to explore what can be a sensitive subject. Information should be available in a number of formats to accommodate all patients and provided by knowledgeable health professionals. To optimise successful sexual function education and information, barriers to delivery must be addressed and an open dialogue between health professionals and patients encouraged.