Quality of Life Judgements and Appraisals of Life after SCI
Research type
Research Study
Full title
Quality of Life Judgements and Appraisals of Life after Spinal Cord Injury: a Comparison of Healthcare Professionals, the General Population, and People with Spinal Cord Injuries
IRAS ID
310494
Contact name
Bethan Roberts
Contact email
Sponsor organisation
University of Oxford / Research Governance Ethics and Assurance
Duration of Study in the UK
0 years, 6 months, 2 days
Research summary
Summary of Research
Spinal cord injury (SCI) has been described as one of the most devastating non-fatal injuries, which requires a person to adjust to a new reality without preparation. One model of adjustment to life after SCI suggests the way someone thinks about or “appraises” the injury, and their ability to manage, determines how they cope and psychologically adjust. Although some individuals experience long term emotional difficulties after SCI, there is evidence to suggest that how people evaluate their injury and life satisfaction changes over time and that individuals with SCIs rate their quality of life no differently to those without a SCI. Despite this finding, the evaluations, and beliefs about what it must be like to live with a SCI made by able-bodied individuals appears different to those with lived experience of SCI. Able-bodied individuals tend to underestimate quality of life and make more negative appraisals of living with the injury. Similar findings have also been demonstrated within healthcare staff. This is particularly worrying as healthcare staff will often be involved in making treatment decisions or providing a narrative to patients about what life might be like after life changing injuries. As such, this study aims to investigate whether people with SCI (PwSCI), healthcare professionals who work with PwSCI, and a general population comparator group, have different appraisals and make different judgements of life satisfaction following SCI. This will be done by giving the PwSCI, the health care professionals who work in SCI rehabilitation, and the comparator group a vignette of a person that has experienced a SCI resulting in tetraplegia. The groups will then be asked to fill out two questionnaires exploring their judgements of how that person might evaluate their life satisfaction and then appraisals they might make about the injury and their ability to cope. The responses of the group will be compared to understand if there are differences between how the groups might evaluate life after SCI.Summary of Results
Spinal Cord Injury (SCI) has been described as one of the most devasting non-fatal injuries experienceable. The often-abrupt onset requires individuals to begin to come to terms with a new reality without preparation. A model that has been proposed to understand how people adjust after a SCI says that the way an individual thinks about their own injury and their ability to manage determines how they cope. Those that think of their situation or injury are manageable are more likely to cope well and experience greater life satisfaction. Those that think about their situation or injury as unmanageable are less likely to cope well.Whilst the way people adjust to life after a SCI is variable, most individuals demonstrate considerable psychological resiliency. Most experience a pattern of low depression and anxiety symptoms and report intermediate levels of life satisfaction after their injury.
Despite this, beliefs made by individuals without SCIs about what it would be like to live with a disability are overly negative compared to the experience of those who have sustained the injuries. This same pattern of bias has also been shown in healthcare professionals. It demonstrates that able-bodied individuals including healthcare professionals, consistently underestimate the quality of life a person with a SCI might experience. This is worrying as healthcare professionals have a role in scripting patients’ expectations of what life might be like after an injury and so, may negatively influence beliefs individuals form about their injury and their capacity for life satisfaction. Therefore, this current study aimed to explore whether there was a difference between the thoughts and quality of life judgements made between persons with SCIs, healthcare professionals and the general public when thinking about life after a SCI.
Hypothesis
1. We predicted that healthcare professionals and the general public would think more negatively about life after a SCI then the SCI group.
2. We predicted that healthcare professionals and the general public would predict poorer quality of life following a SCI, than the SCI group.Method
For this study we recruited people with SCIs from an inpatient rehabilitation centre. They had to be at least eight weeks since their injury to be able to participate. We also recruited healthcare professionals working directly with people with SCIs at the same rehabilitation centre and members of the general public via social media.
To assess participants thoughts about life after a SCI and their quality-of-life predictions, all participants read a short story of a person that had experienced a SCI resulting in them becoming paralysed. They were then asked to complete two questionnaires. Participants were specifically asked to complete them based on how they thought the person in the story would think. The first questionnaire focused on appraisals. This questionnaire assesses a person’s thoughts in relation to their SCI and current situation. The second questionnaire focused on quality of life. On this questionnaire the user rates on a scale of 0-10 their satisfaction with their life overall, physical health and mental health.
Key findings
63 participants completed the survey, 21 participants in each group. It was found that there was a significant difference in scores on the appraisal’s questionnaire between the SCI and general public group. The general public precited that the person in the story would have a more negative view of their injury and situation than the SCI group. The general public also predicted the person in story would have significantly lower satisfaction with their physical health than the SCI group and their mental health when compared to the SCI and healthcare professional group. No differences were found between the SCI and healthcare professional group.
Discussion
This study shows that the general public predict that the lived experience of SCI is associated with poorer quality of life and a more negative view of injury and situation than individuals with a SCI diagnosis. It was hypothesised that the negative bias found may be a consequence of limited opportunity for contact with individuals with SCIs to learn about the realities of living with a SCI. Therefore, beliefs can often be shaped by societal or media portrayals of disability which focus on loss, tragedy, and inability. This is problematic as biased societal views could impact the social and vocational opportunities a person with a disability can access. More broadly it may impact how disability is prioritised and discussed by policy makers.
We predicted there would be a difference in the thoughts and quality of life predictions made between the healthcare professionals and group with SCIs, however, we did not find this. This is an encouraging finding as healthcare professionals’ beliefs have the capacity to influence what treatment options are pursued or not and how life after a SCI is spoken about all of which has the potential to influence a person’s sense of hope and adjustment to a life changing injury.REC name
North West - Preston Research Ethics Committee
REC reference
23/NW/0043
Date of REC Opinion
15 Mar 2023
REC opinion
Further Information Favourable Opinion