Suffering a spinal cord injury (SCI) is life changing and traumatic. In cases such as paraplegia (loss of function in the legs and lower body) and quadriplegia (loss of function in the arms and legs) the physical impact upon the body’s systems that control sensory, motor and autonomic function is clear. However, the mental impact can be an equally difficult hurdle to overcome.
The Challenge of Adjustment
Adapting to significant personal change is an inherently stressful process, as it constitutes a conflict between the established and new ways of living. These stresses are particularly acute when losses have been forced upon us by the whim of circumstance.
While it is easy to appreciate the person’s sudden loss of physical control, and the many medical complications they will undoubtedly experience, the challenges faced are far broader in range and have deeper impact. While the person is forced to learn new processes achieving even basic biological tasks such as elimination and movement, they also face serious losses in their expectations for their future life, capabilities, opportunities and their very self-identity.
The mental impact of a spinal cord injury can be as difficult to overcome as the physical impact on the body and its systems.
Team Integration is Vital
Occupational therapist and Case Manager, Jill Fraser (pictured), points out that successful adjustment to such comprehensive change in material, physical and emotional aspects of life are highly interdependent. Those teams supporting people facing such adjustment challenges need to be highly integrated and necessarily include legal advocates, a range of clinicians and a case manager to ensure the crucially necessary co-ordination.
It is easy to recognise that adjustment to newfound constraints is what needs to happen. However, it must be acknowledged that these constraints are not ones that the person ever wanted to, or envisioned having to, undertake. The person suffering an SCI will be required to learn many new tasks and reliably maintain routines necessary, for sustaining their health and facilitating their future life. Their attitudes towards themselves and their future will have a direct role in shaping their motivation for meeting the multi-dimensional challenges of adjustment.
Different Goals for Different Stages of the Rehab Journey
The different stages of the person’s rehabilitation journey will have different goals at each stage. During the early (post-acute) stages, the person will be required to learn a series of new routines fundamental to their biological functions and ability to provide effective self-care. Many of these new practices around movement and positioning, toileting, wheelchair use, washing and dressing that had previously been automatic must now be relearned with new levels of conscious control and sometimes reluctant changes to their usual activities.
Development of these occupational skills can be most effectively supported within the hospital initially, in an inpatient environment where such support is immediately available when required. As progress is made the person can be supported to begin to learn adapted ways to achieve other functional goals such as preparing food and exercising to maintain fitness.
As progress is made, the person can be supported to begin to learn adapted ways to achieve goals such as preparing food and exercising to maintain fitness.
Adjusting to an Altered Identity
From these early stages the person will also be undertaking the vast psychological task of adjusting to an altered identity embodied by their new patterns of living. Their new relationships with their body, its basic functions and the realisation that these will now be permanent features, may unsurprisingly give rise to feelings of disgust, rage, hopelessness about the future, negative self-evaluations and feelings of being broken or inadequate.
Any and each of these can lead to deleterious effects upon motivation, a dangerous avoidance of the tasks necessary for the maintenance of health and may in some cases lead to suicidal ideation.
Support for Interdependent Challenges is Vital
Consultant Neuropsychologist, Dr Paul Priem (pictured), points to research which suggests that it is far from inevitable that such psychological responses immediately translate into psychopathologies such as anxious or depressive syndromes (Craig, Tran and Middleton, 2008). However, even in the absence of such psychiatric thresholds being met, such attitudes must be monitored, and the person supported in their coping, if their impact is not to become more serious.
Effective support for the interdependent challenges of functional adaptation and psychological adjustment requires team members to understand not just the person’s needs, but who that person is. For those living alone, the risks are increased substantially and the need for experienced, reliable support is essential until further adjustment is made.
Knowing the Client is Crucial
The person’s age, life-stage at the time of injury, relationship styles and history, expectations for their future and any personal challenges previously faced, will inform their approach to rehabilitation. The team’s psychologist is well placed to obtain this information and develop a formulation that allows an individualised understanding of the person’s efforts and difficulties.
The Challenge of Moving to Independent Living
The point at which the person leaves the heavily supported inpatient environment for their home has been found to be a time of escalating psychological concerns and increases in depressive and anxiety symptoms (Kennedy and Rogers, 2000). The person will now really experience living independently after SCI for the first time in their life. While the legal team will be instrumental in providing funds to provide suitable accommodation and transportation, the clinical team must ensure that this home is also one that allows a smooth transition and the continuation of rehabilitation. When both are achieved the person has a platform from which to continue their adjustment.
At this stage the person with the spinal cord injury will be adjusting to their interpersonal relationships in new ways, re-engaging with established relationships and the broader social world in a manner that will have irrevocably changed. Participation in shared activities with friends may now be more difficult or impossible. Leaving the home to shop or work may provoke fears around other people’s perceptions of them. The person’s psychological adjustment will affect their engagement with the rehabilitative opportunities provided by clinicians, some of which will now likely be facilitated by Support Workers or Rehabilitation Assistants.
Adjustment is the Uniting Concern
As the person begins again to negotiate their fears and issues of evaluation by themselves and others, they must trust that their teams share their personal goals. This trust will be essential to negotiating the delicate balance between instructions, encouragement and nurturing that comprises their rehabilitation. Adjustment is required of the person at every stage of their rehabilitation following their spinal cord injury. It is perhaps best viewed as a continuous process which can be successful or frustrated at different times, requiring understanding and an element of patience from those involved. What is certainly more easily stated definitively, is that adjustment will be the uniting concern of every member of their clinical and legal teams.
Communication with the Lawyer on Funding Needs
It is therefore essential from a legal perspective that all the right pieces of the puzzle are put into place along with appropriate funding during what is effectively a staged process of rehabilitation and adjustment. Good communication between the lawyer and the case manager is vital right from the outset in order to ascertain, following an immediate needs assessment, what that particular person needs.
The availability of funds will help deliver the person’s needs, which extend to the provision of services including a case manager, occupational therapy, clinical neuropsychology, support workers and accommodation and equipment advisors, to name but a few.
This is however far from an exhaustive list in terms of the rehabilitation team. Whilst keeping a close eye on mental health, other disciplines may also be required, and therefore funding, in the areas of urology, gastroenterology, andrology, pain management, etc, all of which will play a role in maintaining a person’s overall well-being.
Jill Fraser, Case Manager and owner of Maia Rehabilitation, has over 20 years of clinical experience as an occupational therapist and more than ten years co-ordinating care packages for clients who have suffered catastrophic injuries. Jill has experience working with spinal, orthopaedic injuries, amputations and acquired brain injury, along with the associated mental health issues.
Dr Paul Priem, owner of Priem Therapies, is a Consultant Clinical Neuropsychologist providing evidence-based, personally tailored and cost-effective treatments for individuals and families facing the challenges associated with neurological conditions including spinal and brain injury.
Daryl Robinson is a specialist catastrophic personal injury lawyer at Barr Ellison Solicitors, with experience in acting for clients with serious injuries, including those who have suffered spinal cord injuries. Barr Ellison has offices at 39 Parkside and at Addenbrooke’s Hospital in Cambridge.