A spinal cord injury (SCI) has severe consequences for the persons affected. The inability to control certain movements, restrictions in daily living or work, the loss of independence or the inability to participate in certain societal activities with friends, an insecurity regarding the future, one's personal role and expectations towards oneself are just a few examples emphasizing the huge challenges people with SCI might face.
Considering all these challenges, one would expect that the well-being of persons with a spinal cord injury is severely affected by the disability onset. And indeed, people with SCI generally report lower levels of well-being than the general population.
However, recent research shows that a majority of the persons with SCI are doing well. Many of them constantly report high levels of well-being after disability onset. Others show low well-being levels soon after the injury, but recover as time passes by. Some persons seem unable to function well for years after the injury and constantly report low levels of well-being. This group, however, represents a comparably small proportion of all affected persons.
Why are these differences observed and what are the factors contributing to these differences? These questions have received considerable attention: knowing what factors influence well-being might be a first step towards targeted interventions aiming to support and enhance the life situation of persons with a spinal cord injury.
Past research has yielded important findings that have led to a perspective change. Initially, it was assumed that all persons with SCI adjust in the same way. It was suspected that every person passes through a fixed set of stages, consisting of an initial shock after the injury, a denial of the injury with phase of anger, bargaining, depression and finally the acceptance of one's life situation. Empirical findings, however, have not supported this assumption. Every person reacts and adjusts individually to disability onset.
Well-being after a spinal cord injury depends on many factors. It is important to highlight that the lesion level, as well as the severity of the injury, including bodily impairments, do not predict the well-being of persons with SCI accurately. Persons with a tetraplegia do not necessarily have a lower well-being than persons with paraplegia.
Psychological resources and strengths, as well as how someone appraises and copes with the injury seem to contribute more substantially to well-being. Important factors among the personal resources are, for example, high self-efficacy (conviction or belief that one can successfully execute the behaviour required to produce a given outcome), purpose in life (the extent to which a person has life goals), self-esteem or an optimistic and hopeful outlook towards the future. For example, studies show that people with higher levels of self-efficacy report higher levels of well-being.
How an individual appraises the injury can also contribute to an individual's well-being. Negative perceptions towards one's own disability or perceiving benefits and positive changes following the onset of spinal cord injury are examples of appraisals. Recent evidence suggests that persons evaluating their injury as a threat have lower well-being, while persons perceiving their life situation as a challenge report higher well-being levels.
How persons cope with SCI, i.e. which efforts and behaviours they use to manage the demands imposed by their injury, is seen as a further important factor. Frequently, three broad types of coping reactions are differentiated: problem-oriented, emotion-oriented and avoidance-oriented coping. Planning and actively trying to solve a difficult situation constitutes a problem-oriented coping approach. Handling the emotions triggered by a spinal cord injury is an example for emotion-oriented coping. Denying or trying to avoid thinking of the current situation are examples for an avoidant-oriented coping strategy. Overall, the use of a problem-oriented coping strategy, such as planning, is associated with better well-being. In contrast, avoidance-oriented strategies are generally connected with lower well-being. Nonetheless, it is important to highlight that the empirical evidence regarding both appraisals and coping is not without inconsistencies.
Psychological resources, appraisals and coping can be strengthened and modified by cognitive behavioural therapy or other specific programs. However, the degree to which the effectiveness of these programmes has been evaluated varies substantially. For example, evidence for the effectiveness of cognitive behavioural therapy is strong. The effectiveness of other intervention programmes, such as positive psychology exercise, is currently being examined and has yet to be confirmed.
updated: December 2013