Approximately 40 000 people in the UK live with spinal cord injury and 1200 new injuries occur every year (Liu et al, 2014). Secondary medical complications are common and include pressure ulcers and bladder and bowel dysfunction (Sezer et al, 2015), which are costly both for the individual with spinal cord injury and the healthcare service.
A vital element of rehabilitation is the provision of information and education. Patient education optimises patients' participation in their own decision making and care process, and promotes concordance with agreed plans, reducing the risk of post-injury complications, promoting independence and improving quality of life (Harvey and Davidson, 2011). Ultimately, information gives patients the skills needed to successfully reintegrate into the community and be as independent as possible. 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; Eloranta et al, 2016). Patients' preferences and their ability to absorb information are, however, factors that need to be considered when choosing the most suitable approach.
Specialist rehabilitation at the London Spinal Cord Injury Centre (LSCIC), based at the Royal National Orthopaedic Hospital, includes an intensive programme of formal and informal education to help patients understand how the injury has affected their body and how to care for themselves. Peer support workers are an important part of this process and help individuals achieve the adjustments necessary for living with spinal cord injury (Haas et al, 2013). The current 8-week formal inpatient programme has been in place for more than 5 years. It is run on 2 days each week by a group of specialist staff and includes 10 1-hour sessions (Table 1). Educational provision before 2013 was evaluated by a multidisciplinary working party, which included representatives from Aspire (a spinal cord injury charity) and peer support workers. This resulted in the development of the current format, which reflects an evidence-based understanding of the lived experience of spinal cord injury and the key concepts shown to impact on quality of life, as reported in the meta-synthesis by Whalley Hammel (2007).
| Topic | Delivered by |
|---|---|
| Health and fitness | LSCIC physiotherapy team |
| Relaxed | Clinical psychologist |
| Help for you* | Spinal cord injury charities |
| Life after hospital* | Community liaison clinical nurse specialist |
| Your skin and nutrition* | LSCIC nursing team |
| Spinal Injuries Association vocational talk* | Spinal Injuries Association |
| Managing your bladder and bowel* | LSCIC nursing team |
| Coping and independence | Clinical psychologist |
| Money matters* | Aspire (spinal cord injury charity) |
| Sexuality, sexual function and relationships | Sexual function clinical nurse specialist |
LSCIC: London Spinal Cord Injury Centre
In addition, informal information and education is provided daily by health professionals as they assist patients with their care, and progress is monitored in individual goal-planning meetings every 2 weeks, attended by both patients and healthcare staff. A multiple-choice troubleshooting quiz, which the patient undertakes with a member of the healthcare team, assesses their knowledge levels prior to discharge. This enables the health professional to determine any further information required and to make sure that the patient receives the information they need to live as independently as possible after discharge. Patients are also given an A4-size folder to take home containing information on how spinal cord injury affects the body—the ‘education pack’. To ensure staff have the necessary skills and knowledge, they all complete a comprehensive competency book as part of their induction.
Aim
The aim of this study was to explore patient and healthcare staff views about the information and education currently provided to people with a spinal cord injury at the LSCIC.
Method
A service evaluation approach was taken to address the aim. The local research and innovation centre approved the project and confirmed that ethical approval was not required.
Between September and November 2017 outpatients (up to 2 years after injury), inpatients at the LSCIC and healthcare staff actively involved in the rehabilitation of people with a spinal cord injury at the Royal National Orthopaedic Hospital (RNOH) were invited to participate in a questionnaire survey. The staff were provided with study information via team meetings, inpatients during conversations with their peer support worker and outpatients (who had previously agreed with a specialist spinal cord injury charity to be contacted) via email. Participant consent was inferred by return of an attached questionnaire. Peer support workers assisted with survey completion where necessary.
Patient participants completed a locally designed paper or online questionnaire, which asked them to rate how useful they found each of the 10 formal education sessions (Table 1) using a Likert scale of 1-5 (1 being ‘not at all useful’, 5 being ‘very useful’) and provided additional opportunity for free text comments. Health professionals completed a paper questionnaire consisting of multiple-choice questions regarding the informal education they give to patients and which also provided an opportunity for free text comments. Descriptive statistics (frequencies and percentages) were used to describe the sample and to report the quantitative data. Free text comments were collated under headings.
Results
A total of 89 people initially agreed to take part in the survey: 48 heathcare staff and 41 patients.
Patients
Of those approached (n=91), 10 inpatients and 31 outpatients agreed to participate—although only 23 outpatients filled in the questionnaire, and even some of those did not reply to one or two questions (Table 2).
| Inpatients (n=10) | Outpatients (n=23) | ||
|---|---|---|---|
| Gender | Male | 5 (50%) | 20 (87%) |
| Female | 5 (50%) | 3 (13%) | |
| Age | ≤ 30 years | 2 (20%) | 4 (17%) |
| 31–64 years | 7 (70%) | 15 (65%) | |
| ≥ 65 years | 1 (10%) | 4 (17%) | |
| Spinal cord injury level | Paraplegic | 4 (40%) | 14 (61%) |
| Tetraplegic | 4 (40%) | 3 (13%) | |
| Able to walk | 2 (20%) | 6 (26%) | |
| Attended education sessions | Yes | 9 (90%) | 18 (78%) |
| No | 5 (22%) |
Formal education
The most highly rated sessions were ‘bladder and bowel management’, ‘skin and nutrition’ and ‘help for you’ (Table 3).
| Education session | No. of inpatients rating session as 5 (very useful) | No. of outpatients rating session as 5 (very useful) |
|---|---|---|
| Bladder and bowel management | 5/7 (71%) | 13/19 (68%) |
| Skin and nutrition | 4/7 (57%) | 12/18 (67%) |
| Help for you | 4/7 (57%) | 10/18 (56%) |
Note: Totals are less than 10 inpatients or less than 23 outpatients as some of the participants indicated they did not attend that particular session
Most inpatient respondents (60%) stated they would not remove any topics, but a few people suggested that topics on sex (n=3), equipment choice and demonstration (n=3) should be added. Other inpatients commented that ‘I think all the talks were very helpful and the staff were helpful and friendly’.
Eleven of the 15 outpatients (73%) who commented also stated that they would not remove any sessions, but one person did not feel the need for the session on sexuality, sexual function and relationships, and another stated they would remove the relaxation session. Additional comments made by outpatient respondents included: ‘wasn't enough talk about sex and spinal injury’, ‘no help from RNOH after discharge’, ‘often the talks just duplicate the things I had already learned on the ward’.
Post-discharge needs
Thirteen outpatient respondents commented specifically on the information they needed to support the post-discharge period (example comments in Table 4), and 15 out of 23 outpatient respondents (65%) reported using the post-discharge education pack. The most common complications experienced following discharge were bladder issues, including urinary tract infections and blocked urinary catheters (n=6). In addition, there were reports of skin issues (n=2), pain (n=1), autonomic dysreflexia (n=1) and spasms (n=1).
| Theme | Comments to support |
|---|---|
| Family and friends' understanding of spinal cord injury (SCI) | ‘Family and friends understanding of SCI’ ‘Helping partners’ |
| Sex and relationships | ‘More about sex and relationships’ |
| Community assistance | ‘Getting assistance from DWP [Department of Work and Pensions] and social services’ |
| Accessibility following discharge | ‘Accessibility once discharged, eg public transport, taxis, rail travel’ |
Session timings and structure
The majority of inpatient, 80% (n=8), and 29% (n=6) of outpatient respondents stated a preference for weekday sessions; 6 inpatients) and 10 of the 21 outpatients who replied to this also stated a preference for afternoon sessions, although one commented that ‘straight after lunch poor choice as everyone sleepy’.
Face-to-face sessions were the preferred education delivery method for the majority of inpatients who responded, 80% (n=8) and for 74% of outpatient respondents (n=17). An app/e-learning option was the second most preferred method for both inpatient and outpatients. For each of the sessions, around 20–30% of respondents said they had not attended. Reasons for non-attendance were not ascertained.
Family attendance
All 10 inpatients responded to this question, with 6 stating that they would like to attend sessions with family members; of the 21 outpatient who answered this question (2 did not), 5 said that they would like to attend sessions with family members. The topic sessions to which it was seen as important to invite a family member included ‘sexual function, skin, coping and independence’; ‘life after hospital’; ‘money matters’. However, patients generally did not want their family members to be present at the ‘bladder and bowel’ session.
Staff
Staff who participated included rehabilitation consultants, qualified nurses and support workers, occupational therapists and physiotherapists, case managers and rehabilitation practitioners. Of the 48 staff members who responded, 89% (n=43) reported providing informal education to inpatients within the last week and 96% (n=46) within the last month, with 98% (n=47) expressing the view that it was an enjoyable part of their role. Most respondents (94%, n=45) agreed that information and education provision was everyone's responsibility.
The most common barrier to information provision was reported as a lack of time (n=31), followed by inadequate staffing (n=13), poor knowledge (n=12) and a lack of patient concordance (n=11) (Table 5). A few respondents further commented that they did not feel confident in all topics, had other work commitments and/or would prefer to deliver timetabled rather than ad-hoc sessions.
| Barriers | Responses |
|---|---|
| Time | 31/67 |
| Knowledge | 12/67 |
| Inadequate staffing | 13/67 |
| Lack of patient compliance | 11/67 |
Note: Partipants were able to select more than one barrier from the list, giving total of 67 responses for 48 staff members
Thirty three out of 57 responses (58%) (participants were allowed to select more than one answer) stated that they would ask patients questions to assess how well they had grasped the information received, but only 14 reported writing the results of the troubleshooting and reporting gaps in patients' knowledge in the education folder; even fewer (n=11) reported the provision of further education and retesting at a later date. The best opportunity for providing education on bladder, bowel and skin was considered to be during morning sessions of personal care.
Free text comments
Free text data from staff were collated under three headings: communication, barriers and priorities (Table 6).
| Heading | Example comments |
|---|---|
| Communication (clear and accurate information, language, joined-up working) | ‘Lots of pictures and models, not too much medical jargon’ |
| Barriers (understanding, compliance, provider knowledge, delivery/format of education, time, privacy and dignity) | ‘Time, concentration, education levels, background privacy, culture, time since injury’ |
| Priorities (priority given to patient education) | ‘Education does not seem to be a priority for a lot of staff and patients. When doing goal planning it is the most consistently carried over goal through non-completion’ |
Discussion
The aims of this study were to collate patients' and healthcare staff views about the information and education currently provided to people with a spinal cord injury at the LSCIC and use these data to inform an evaluation of current provision. Although the results indicate that both inpatients and outpatients are generally happy with the formal education programme they receive, a number of barriers relating to its provision were identified. Addressing these barriers and making relevant changes to current provision should enable patients to be better supported throughout their rehabilitation trajectory.
Findings support the need for information throughout the in-hospital and post-discharge period. Complications are common after a spinal cord injury (Sezer et al, 2015) with findings from this study suggesting that information and education on bladder and bowel management is particularly important after discharge. The findings here support those of van Wyk et al (2015) that delivery of education should continue following discharge and reintegration into a community setting, with specialists working with community staff to facilitate this support. Sessions should also be provided in a number of different formats to create more engaging learning experiences for patients. Although face-to-face sessions were generally preferred by the participants here, the use of e-learning/smartphone apps was also viewed as a popular education delivery method, perhaps reflecting the needs of the younger group of patients, a finding also widely supported in the literature (Delparte, 2014; van Wyk et al, 2015).
In terms of barriers, time was a primary staff concern, although it was unclear whether it was the amount of quality time spent with the patients or the amount of education/information that needed to be learnt by the patient during a short admission period that was more of an issue. Ljungberg et al (2011) also found that it is a challenge for rehabilitation professionals to provide health education in increasingly shorter timeframes. Inadequate staffing is seen as a barrier to giving education and could be related to staff feeling they have insufficient time to do this. The nursing workforce crisis has been widely documented and Twycross (2018) estimated that in England alone there are around 40 000 unfilled posts. However, van Wyk et al (2015) challenged the notion that healthcare staff lack time, arguing instead that it depends on whether education is seen as a priority, a point also reflected in these study findings. A lack of perceived value might also explain why there was a 20–30% non-attendance rate for each session, thus it is imperative to foster an environment where education is valued.
The second identified barrier was staff knowledge. Findings suggest that staff do not always feel they have the expertise and confidence to give education, which could lead to variation in the quality of the information provided. A study by Gupta et al (2012) comparing nurses' knowledge related to pressure ulcer care in people with a spinal cord injury showed a significant difference in management knowledge between nurses working in two different spinal cord injury units. Nurses cannot be expected to provide effective education/information if they do not have enough expert knowledge. Another potential barrier is that staff may have the knowledge but not the skills necessary to deliver patient education, making them less confident in this role. Pétré et al (2017) highlighted the need for healthcare staff to develop an educational relationship with patients rather than the more dominant advisory relationship, but staff often receive inadequate training on how to be a successful patient educator and may feel more secure in the position of expert (van Wyk et al, 2013; Pétré et al, 2017). Van Wyk et al (2013) further highlighted the importance of embracing adult learning principles, a point also supported by Delparte et al (2014).
The findings further identify a lack of patient concordance in some cases. This suggests that attention needs to be paid to patients' readiness to learn after an intense physical and psychological life-changing event (van Wyk et al, 2013). Patients may not be motivated to learn different aspects of their care/injury until the need arises (Whalley-Hammell, 2007; Delparte, 2014). Information and education needs to be delivered at a time most relevant and meaningful to each patient and their family, thus highlighting the potential need for better assessment of individual needs during the inpatient period and at subsequent intervals after discharge from hospital.
Recommendations for practice and future research
Education needs to be viewed as a priority element of all spinal cord injury rehabilitation programmes. Patients should be encouraged to attend formal education sessions and staff should optimise opportunities for informal education provision. Staff should also be provided with training to support their delivery of quality education. Specifically, more attention needs to be given to the use of adult learning theory to enable successful patient engagement and learning. The development of skills-based competences such as coaching/motivational interviewing would also be beneficial.
Future research on the use of different information and education formats such as the use of a smartphone app is recommended. A further suggestion would be additional investigation into how community-based education can continue following discharge to improve quality of life and further reduce post-injury complications.
Limitations
This single-site service evaluation is limited in scope and lacks generalisability. Recruitment and data collection from patient participants was affected by hospital volunteers and a peer support worker not having the capacity to assist with recruitment as originally envisaged. Reasons for not attending the sessions were not ascertained. A formal process of thematic analysis was not possible due to the limited number of free text comments.
Conclusion
The aim of this study was to evaluate current information and education delivery from the perspective of both patients and staff. Findings support the continued need for both formal and informal sessions, provided by all members of the healthcare team, with particular emphasis on issues such as bladder and bowel management and sexual function after discharge. A high-quality patient education programme has the potential to reduce post-injury complications. However, to optimise the chances of success, barriers to delivery such as time, prioritisation and staff knowledge and skills need to be addressed.