Back Up’s report into living with a spinal cord injury long term

Content

1. Aims
2. Summary of findings
3. Summary of recommendations for Back Up
4. Methodology
5. Results
6. Resilience factors
7. Problems and worries

1. Aim of our report:

• To develop our understanding about the impact of living with a spinal cord injury long term.
• To identify particular needs of people living long term with a spinal cord injury.
• To identify opportunities for Back Up to adapt and develop our services to meet those needs.

2. Summary of findings:

• Some people believe that Back Up is not relevant for people living long term with a spinal cord injury. They may have used (or heard of) our services when they were newly injured, but they feel that the services we offer (activity courses, mentoring) are no longer applicable to them.
• Factors associated with resilience and a positive outlook on life: these include being busy and involved with other people, valuing support from friends, family and health professionals. Active involvement in the spinal cord injured community is associated with a good quality of life; ‘being there’ for newly injured people adds value to life with spinal cord injury. People with a positive outlook show a pragmatic acceptance of the reality of spinal cord injury. They identify, but are not overwhelmed by, concerns about the future – the likelihood of further compromises and increasing needs…. ‘I knew it would get harder as I got older.’
• In contrast, other interviewees have a gloomier outlook. They suffer from pain and/or physical ailments, they continue to express frustration about their spinal cord injury related limitations, and they are pessimistic about the future.  In the worst cases, they seem preoccupied with severe pain and frustration, struggling to find the motivation to carry on. Their strategies include withdrawal and even self-blame.
• One interviewee gave a markedly ambivalent picture; living an outwardly active life, but recognising that the strategy of denial and avoidance of confiding relationships could lead to isolation and a risk of depression.
• An important take-home message from this small study of people living long term with a spinal cord injury is that active involvement with the spinal cord injured community seems to be associated with a positive, resilient outlook, and a good quality of life.

3. Summary of recommendations for Back Up:

• Communication is key – the word ageing could alienate people from the discussion. We need to use language such as living well with spinal cord injury to engage everyone affected by spinal cord injury to consider how they live now, and how they can live well in the future.  We should aim to identify and address anxieties and worries.
• Focus on communications emphasising people’s experiences of living well with a spinal cord injury: people in their 20s/30s/40s to engage as many people as possible who have been living long term with a spinal cord injury, showing that our services are applicable to them.
• How many Back Up volunteers and staff who have been living long term with a spinal cord injury are comfortable talking about it? We need to address the issue with our volunteer and staff team, who may need more training/space to talk about long term issues, before supporting others?
• Provide more training for staff and volunteers on pain management.
• Revisit the language we use in our volunteer training, e.g. encouraging mentors in training to ‘think back to when you were first injured’ – to encompass living long term with spinal cord injury and engaging with those experiences and emotions.
• Do a session on each course about ‘living well’, looking sensitively at ‘resilience’ factors as well as at problems and worries identified.
• Expand the study to at least 30, as we cannot rely on findings from the existing small sample of 11 interviews (for example, the proportions of ‘resilient’ vs ‘gloomy’ interviewees might be different in a larger, unbiased sample).  The findings should be regarded as interesting provisional results from a pilot study.
• If the association between active involvement with the spinal cord injured community and resilience is replicated in a larger sample, Back Up should promote outreach to vulnerable spinal cord injured people who may benefit.
• Promote wider research that shows that while health and function can decline with age, life satisfaction and quality of life can remain stable (Issues of ageing with spinal cord injury, 1993 and British Ageing with SCI Study: changes in physical and psycho-social outcomes over time 2010)

4. Methodology:

11 pilot interviews were conducted over the telephone during 2017 by our Mentoring Coordinator, Andrew Dickinson, who selected potential interviewees from the Back Up database and contacted them to explain the project and seek their consent. Selection of interviewees was semi-randomised: all interviewees were registered with Back Up and had lived with a spinal cord injury for more than 20 years. Their involvement with the charity varied.  A stratified sample was drawn from all those registered with Back Up, with a deliberate mix of ages, level of injury, and gender.

All interviewees were asked a series of questions, as follows, in a semi-structured interview format:

• Tell me what you’re doing with your life at the moment?
• What were your expectations of ageing with a spinal cord injury?
• How do they compare with your actual experiences?
• What has changed since your injury?
• What did you struggle with, what were the challenges?
• Was there anything missing in terms of support offered?
• Questions around current leisure activities, relationships, social life, employment, physical and emotional wellbeing.
• How do you feel about your injury now, compared to how you felt when you were first injured?
• How do you feel about the future?
• What are you concerned about, if anything?
• What do you know about Back Up and how we can help people in your situation?
• How have you been involved with us so far?

The interviews were recorded (audio), and transcribed.   The 11 interview transcripts were read and analysed by two independent readers, Beth Scrimshaw and Susanna Graham-Jones, to produce the following brief summary of findings, and to enable staff and trustees to digest the implications for Back Up as a service provider.

5. Results

Interview findings

A detailed analysis of the 11 respondents’ answers to the questions listed above yielded the following 12 themes, or domains: family life; social life and relationships; emotional wellbeing; activities – sports, employment, volunteering;  health care; personal care;  perceptions of change in society since the spinal cord injury occurred; the perceived and potential role of Back Up as a charity in the sector, for those living long term with a spinal cord injury;  with a particular focus on the ups and downs of life with a spinal cord injury over 20+ years.

The most striking finding overall, in this small sample, was the contrast between a generally positive outlook on life with a spinal cord injury (five of 11 interviewees), compared with the more gloomy and anxious outlook of another five interviewees.  Further analysis of interview transcripts was therefore undertaken, with the aim of identifying factors relevant to these contrasting perceptions of people living long term with a spinal cord injury. One interviewee gave a markedly ambivalent picture; living an outwardly active life, but recognising that the strategy of denial and avoidance of confiding relationships could lead to isolation and a risk of depression.  ‘Frequently mentioned factors’ are noted in six to nine interviews, i.e. in more than half the sample.  Let us be clear that it is not the case that ‘resilient’ people do not mention problems, nor that ‘gloomy’ people have nothing positive to say.  The impression of a contrast (resilient vs gloomier interviewees) resulted from the general impression of the levels of energy and quality of life evident in each transcript.

6. Resilience factors (15 identified)

Factors which seem to be associated with positive resilience in living long term with a spinal cord injury:

Five interviewees came across as resilient: they are busy, energetic people. Their interviews reveal stories of how they had picked themselves up after the initial shock of spinal cord injury, determined to ‘get a life’. Some could be described as ‘expert patients’. Some are very positive about the benefits of involvement with the spinal cord injured community, and are engaged in supporting those more recently injured. Others have gained self-esteem from living and working independently, out with the spinal cord injured community.  Active involvement in the spinal cord injured community seems to be associated with a positive and resilient outlook on current and future life with a spinal cord injury.

Table one below lists the resilience factors identified as particularly prominent in these interviews, starting with the most frequently featured ones, alongside illustrative short paraphrased extracts (taken from all 11 interviews).

Table one

7. Problems and worries (16 identified)

Factors associated with a gloomy outlook in people who express anxiety and a degree of pessimism, or ambivalence

Interviews with these six people reveal unease and apprehension – ‘being in the wheelchair, I have never felt comfortable with myself.’

The factors identified below are associated with a sense of health and access problems lying in wait as the future unfolds, and were particularly evident in interviews with those who expressed a predominantly gloomy or anxious outlook. ‘I am scared about the future; things are just going to get harder.’  These ‘problem factors’ are listed in Table two below, starting with the most frequently mentioned ones. Illustrative material taken from all the interview transcripts (direct quotes and paraphrased material) is presented in the right-hand column.

Table 2

Many thanks to Dr Susanna Graham-Jones for compiling the report