Evidence and research

Alongside the vital insight we gain from our service users, volunteers and staff, we broaden and deepen our understanding through examining published research in the specific areas we are considering, and commissioning research of our own. This ensures our services remain relevant and have the greatest impact on the people we support.  We have detailed all our services below, explaining how each one is underpinned by research, evidence and need.

Courses

Back Up was founded in 1986 by skier and stuntman, Mike Nemesvary. The first course we ran offered people with a spinal cord injury the chance to get ‘back up’ the mountain to try out sit skiing. Mike wanted everyone with a spinal cord injury to experience the freedom and independence of life on the slopes. Since then, our programme of courses has expanded significantly to offer life skills courses that teach you things like how to transfer from your car to your wheelchair and how to take public transport, as well as activity-based courses that offer participants the chance to try out adapted sports like kayaking and abseiling.

Paul Kennedy, a renowned clinical psychologist, found in his study that Back Up courses significantly increase satisfaction with leisure, self-efficacy, and motivation to engage in activities, and significantly reduce anxiety.  Participation and self-efficacy are related to better outcomes in life (Kennedy, Taylor and Hindson, 2006).

In 2010, we carried out in-depth qualitative telephone interviews to find out what long-term impact our multi-activity courses were having on participants:

• 100% of participants said they had long-term benefits from our courses. These were extremely varied, but common themes were:
  • Improved outlook
  • Increased confidence
  • Increased positivity
• A few people had kept up one of the specific activities on the course, but all but one mentioned being substantially more active in their lives after the course.
• Seven of the 11 people surveyed had developed new lasting friendships because of the course.
• Nine out of 11 viewed their lives as in a good place at present. The two who did not had issues with pain management, which would probably have been hard to avoid developing, but both were actively working to address those issues now that they had arisen.

In recent years, we’ve diversified our range of courses to target specific ages and groups of the spinal cord injured community who are most likely to be excluded from statutory services.

Wheelchair Skills

In 2001, Tomasz Tasiemski, a leader in active rehabilitation from Poland, attended our summer multi-activity courses in the Lake District to teach wheelchair skills. Through his involvement, we devised our own wheelchair skills train-the-trainer module and taught our first wheelchair skills trainers in 2003. Wheelchair skills has since remained a key element on all our UK rehabilitative courses.

We saw the life-changing impact our peer-led wheelchair skills sessions had on participants who attended these courses, and we wanted to be able to reach more people early on in their adjustment to spinal cord injury. This led us to piloting our first wheelchair skills sessions at the spinal cord injury centres in Stoke Mandeville and Glasgow in 2004. Today, we offer wheelchair skills training at all 11 UK spinal centres. We also deliver wheelchair skills extra which takes place in local towns and communities. These sessions show participants how to take the vital skills learnt on the ward and put them into practice in real-life situations.

All our volunteer trainers have a spinal cord injury, as we recognise that peer support is vitally necessary for positive adjustment. Divanoglou, Tasiemski, Augutis and Trok identify that active rehabilitation is a specific community-based approach that is a grassroots transfer of practical life and social skills from experienced and active individuals with a spinal cord injury (peer mentors) to newly injured individuals or others who need it.  This is achieved by sharing knowledge and skills as well as by developing a progressive attitude through inspiration and motivation (2017).

Telephone support

Our spinal injury liaison and telephone support service started in 2005.  It became the outreach and support team in 2009 and started to focus on reaching a wider range of people. Until then, we hadn’t been making outgoing calls unless requested. We now started to proactively call people we’d met through wheelchair skills and patient education sessions who needed support but weren’t actively seeking it.

In our experience it can be when people return home from hospital that reality hits, leaving them feeling isolated and facing sometimes overwhelming challenges.  That’s why we stay in touch at those crucial times, learning about the issues people are facing and offering tailored support from people who’ve been there and have come through similar challenges. We can then link them into our other services which might benefit them, and signpost them to other organisations that can provide support.

During our last strategic review, many people told us that they would not have got involved with Back Up unless we had proactively contacted them.

Mentoring for people with a spinal cord injury

Back Up’s mentoring service started in 2005. We recruited our first part-time coordinator in 2007 and the service grew significantly with the help of funding from the Big Lottery Fund between 2013 and 2017.

The service matches people with a spinal cord injury with someone in a similar situation who can understand the challenges faced. Back Up Mentors are experts through experience and will listen to their mentees’ problems to help them work towards solutions. The charity’s mentors are all volunteers and receive training by volunteer clinical psychologists. The service was established by Dr Clair Pollard, a Consultant Clinical Psychologist for the NHS, who sustained a spinal cord injury in 1999.

The service developed around the recognition of the vital peer-support element of our rehabilitative courses.  We noticed that peer support continued after the course ended in an informal relationship. It was clear that some people needed more support before or after a course. It was also evident that some people were not attracted by the offer of a rehabilitative course, but wanted and needed the chance to speak to someone in a similar situation. There was a need to provide structure and training to help make the informal support effective and safe for the people giving and receiving it. Volunteer clinical psychologists, all with some personal connection to spinal cord injury, devised and delivered the training and helped set up the framework for the project.

The mentoring process was built on Duff and Kennedy’s research. It states that if people can see their situation as manageable, they use will certain positive coping strategies to adjust to their new situation. The strategies which are linked to positive adjustment to spinal cord injury are:

• Doing activities which are meaningful to the person
• Believing something good can come from the experience
• Acceptance of injury
• Active problem-solving/goal-setting
• Use of emotional and practical social support

When people apply these strategies, it tends to lead to better outcomes in life. People are more likely to set goals, find new opportunities, improve their self-belief, grow and develop, be more satisfied with life, and cope well with challenges (Kennedy et al, 2003).

Back Up to Work

Getting people into work and employment has long been a top priority for us. We know that only around a third of people with a spinal cord injury go back to work after their injury, and that data excludes people who didn’t go through the spinal centre system (MASCIP, 2017). This is believed to be lower than in the past (Kennedy, 2015) and lower than in other European countries (BSRM, 2010).

Being employed is extensively evidenced to be of huge benefit to physical and mental health. For people with a spinal cord injury specifically, Kennedy states:

‘‘The benefits of employment following SCI rehabilitation are well documented and wide-ranging. Being employed is related to greater life satisfaction, better psychological adjustment and improved quality of life, (Ottomanelli and Lind, 2009; Krause et al, 2004; Anderson et al, 2007) as well as fewer secondary health complications (Meade et al, 2011) and increased life expectancy (Krause et al, 2012). The financial independence (either full or part) resulting from employment also contributes to a feeling of personal growth and an increased sense of purpose (Chapin and Kewman, 2001) and purpose in life has been shown to be directly related to positive psychological adaptation following SCI (deRoon-Cassini et al, 2009).’’ (Kennedy, 2015)

Based on this research and what we heard from the people we support, we started to offer Back Up to Work courses in 2007 to support people back into work and volunteering. Through these courses, participants get a chance to develop their confidence and discuss any worries they have around disability in the workplace. More recently, we were involved in the development of the Multidisciplinary Association of Spinal Cord Injury Professionals’ vocational rehabilitation guidelines that were published in November 2017. These guidelines encourage everyone around newly injured people to have early conversations about employment, so that the individual with the injury feels work is possible.

Evidence consistently shows that early intervention is key to getting people on the path back to employment and volunteering. The concept of vocational rehabilitation after the conclusion of medical treatment is now thought to be outdated and often harmful (Frank, 2016).

Education inclusion

Many children and young people with a spinal cord injury are not fully included in all aspects of education (Institute of Education, 2008). They’re more likely to be depressed and less independent than their non-disabled peers too – all contributing to poor lifelong outcomes. Yet, a higher level of education is linked to better life outcomes with a spinal cord injury (Anderson et al, 2004; Webster, 2009).  Recognising the difficulties children and young people with a spinal cord injury face in education prompted us to set up our school inclusion service in 2009.

By working with the child, family, education institution and other professionals, we ensure every young person with a spinal cord injury can thrive during their education, socialise with their friends and fulfil their true potential. The tailored nature of support varies and includes site visits to ensure accessibility; awareness-raising assemblies with hundreds of students or small groups of staff, or support and advice over the phone, by email, or through our online inclusive education toolkit.

This service has grown immeasurably over recent years, and was rebranded as the education inclusion service in 2018 to reflect the support we offer at all levels of education, from nursery right through to university.

Family Mentoring

At Back Up we conducted our own research with parents and partners in 2010 to find out more about their experiences and what support they might need. Most parents and partners reported:

• Feeling a lack of appropriate practical and emotional support
• Lack of a distinct and flexible service for parents and partners to speak to other family members with experience of spinal cord injury –  the exception being relatives’ days. However, these sessions tended to focus on the loved one with the spinal cord injury, rather than family members.
• The most helpful support mentioned was using emotional/practical support from friends, other family members and other people with a spinal cord injury

The research showed us that family members’ needs were not being met, and they had limited avenues for support. This informed the development of family mentoring, our first service solely dedicated to meeting the needs of family members. It was launched in 2011 and followed the same principles as our mentoring service for people with a spinal cord injury.

We also talked to siblings in 2013 about their experiences and feelings following the injury of a brother or sister.  Most siblings reported:

• Feeling there is a lack of support available for siblings – with a slight bias on the need for a service which can offer both practical and emotional support.
• A need for more practical support early on. More emotional support was favoured at mixed times.
• The importance of having space to be together as a family just after their sibling’s injury
• The most helpful support mentioned was emotional/practical support from friends and other family members

It was clear that everyone in the family could benefit from family mentoring, and so the service was widened to support siblings and children too.

Volunteering

Back Up has always believed that it is people affected by spinal cord injury that are best placed to support others in a similar situation. Therefore, most of our services volunteers either have, or are directly affected by, spinal cord injury. Over 400 dedicated and skilled volunteers deliver our services – as trustees, mentors, wheelchair skills trainers, school advocates, and group leaders on our courses. They are the lifeblood of Back Up.

In 2011/12, we carried out a survey to understand the impact volunteering with Back Up had on our volunteers. The survey showed us that volunteering with Back Up was hugely beneficially for volunteers, with many reporting significant increases in their skills and on themselves as a person. For those that were spinal cord injured, a number of them also cited an impact on how they continue to adjust and cope with their own injury.

Volunteering clearly brings untold benefits and can be seen as part of the wider rehabilitation for people affected by spinal cord injury, offering them the chance to pass on their expertise, socialise, engage in meaningful activities, and grow their self-esteem, motivation and confidence.

U18s participation

We’re the only UK charity that has dedicated services for children and young people with a spinal cord injury. We believe in, and are passionate about, youth participation, with children and young people at the forefront of designing and delivering our U18s services. Youth participation is beneficial for the young people involved too, as they develop meaningful life skills and gain a network of friends with a spinal cord injury.

Our youth advisory group was formed and met for the first time in 2011. The group plays a key role in shaping and developing our youth services by setting up our first ever Moving Forwards course for 18-25s, youth city skills course for 13-17s, youth mentoring service and Back Up Fest – our first accessible outdoor festival. Their involvement ensures that our services are always relevant, as they are driven by young people’s needs.

Our participation principles for under 18s are guided by ‘Building a Culture of Participation’ (Kirby et al., 2003) which suggests that there is no one level of participation that is superior to another. Instead, it suggests that the type of participation activity will be determined according to the circumstances and the children and young people involved. Meaningful participation must be seen as a process, not simply an isolated activity or event.

Family Outreach

For a long time at Back Up, we recognised that family members have needs and should be supported too. This was validated by our findings and published research into the experiences of siblings, parents, partners and adult children of people with a spinal cord injury.

Around a third of partners have clinical depression or anxiety after their partner’s injury. However, the more social support the partner has, the less likely they are to be depressed or anxious (Chandler, Kennedy & Sandhu, 2007).

For parents of children who become injured, there can also be a devastating impact. Only half of them tend to be well adjusted to the spinal cord injury (this is lower than for people with the injury). 75% felt it affected siblings negatively, and half felt a sense of responsibility for their child’s injury.  Issues like depression and anger can recur at significant events throughout their child’s development (Anderson et al, 2004; Webster, 2009).

A family approach is one which considers that spinal cord injury occurs within the context of the family – a child’s ability to adjust to their disability is related to the family’s resources and their ability to adjust too. It therefore follows that if we can support anyone in the family, it will have a positive impact on the whole family – including the loved one with the spinal cord injury.

This approach is the basis of our family outreach service that launched in 2017. We now have a dedicated coordinator who visits spinal centres, providing support during relative days and on the wards to family members of people with a spinal cord injury. Many family members are initially reluctant to accept that help, as they believe that their injured loved one should be the focus. But once people realise that by helping themselves they’re also helping their injured loved one, they’re more likely to accept help. A trial in the in the USA found that psychosocial interventions that targeted both the caregiver and the person with a spinal cord injury were most effective in reducing health symptoms and social exclusion of caregivers (Schulz et al, 2009).

When the needs of all family members are valued and recognised, everyone is more likely to positively adjust. It also creates a strong support network.

Bibliography

• Anderson, C. J., Vogel, L. C., Betz, R. R. and Willis, K. M. (2004). Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine.
• BSRM (2010) Vocational Assessment and Rehabilitation for People with Long-Term Neurological Conditions: Recommendations for Best Practice. British Society of Rehabilitation Medicine [online]. Available at: http://www.bsrm.org.uk/downloads/vr4ltncv45flwebsecure.pdf.
• Chandler, M., Kennedy, P., & Sandhu, N. (2007). The association between threat appraisals and psychological adjustment in partners of people with spinal cord injuries.
• Divanoglou, A., Tasiemski, T., Augutis, M. and Trok, K. (2017). Active Rehabilitation—a community peer-based approach for persons with spinal cord injury: international utilisation of key elements.
• Frank, A. (2016). Vocational Rehabilitation: Supporting Ill or Disabled Individuals in (to) Work: A UK Perspective.
• Kennedy, P., Duff, J., Evans, M. and Beedie, A. (2003). Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. The British journal of clinical psychology/The British Psychological Society.
• Kennedy, P., Taylor N. and Hindson, L. (2006). A pilot investigation of a psychosocial activity course for people with spinal cord injuries.
• Kennedy, P. and Hasson, L. (2015). Return-to-work intentions during spinal cord injury rehabilitation: an audit of employment outcomes.
• Kirby, P., Lanyon, C., Cronin, K. and Sinclair, R. (2003). Building a Culture of Participation: Involving children and young people in policy, service planning, delivery and evaluation.
• Knight, A., Petrie, P., Potts, P. and Zuurmond, M. (2008). The school lives of children and young people with a spinal cord injury. Institute of Education, University of London
• MASCIP (2017) Vocational Rehabilitation Guidelines 2017. Multidiscplinary Association of Spinal Cord Injury Professionals [online]. Available at: https://www.mascip.co.uk/wp-content/uploads/2018/03/Mascip-vocational-rehab-guidelines-NOv-2017.pdf
• Schulz R., Czaja S., Lustig A., Zdaniuk B., Martire L. and Perdomo D. (2009). Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology
• Webster, G. (2009). Children and Adolescents: Growing up with SCI. Presentation at the National Spinal Injuries Centre, Stoke Mandeville. Available at: https://www.dropbox.com/s/9txv9k1p8rjsqq2/Children%20%20Adolescents%20Psychology%20Conference%201%20Oct%202009.ppt?dl=0

Back Up’s internal research papers are available on request.