18

Sustaining a spinal cord injury (SCI) leads to major changes in an individual’s everyday life. The individual must adjust not only to a potential reduction in physical ability but also to changes in occupational status, in leisure activities, and in social and intimate relationships. The limited privacy of the hospital setting during rehabilitation and the increased reliance on nursing staff for intimate needs can intensify emotional reactions, and, faced with multiple stressors like these, it is not surprising that people with SCI can experience clinical anxiety, depression, and posttraumatic stress disorder (PTSD). The critical psychological issues over time are described in Table 18.1.

Depression

In a study by Migliorini and colleagues,¹ 37% of a community sample of individuals with SCI experienced depression, 30% anxiety, and 25% stress, and 8.4% met the diagnostic criteria for PTSD. A review by Craig and colleagues² estimated the frequency of depression during rehabilitation to be ∼ 30%. Pollard and Kennedy³ reported the longitudinal results of a study of emotional impact in people with SCI and found that rates of depression remained relatively stable after 10 years; 38% of the sample reached clinical cutoff scores on the Beck Depression Inventory at 12 weeks and 35% at 10 years postinjury.

Table 18.1 Key Psychological Issues

However, contrary to the historical assumptions of Siller4 regarding the psychological distress of patients following SCI, research has found it is neither universal nor necessary for individuals to experience depression during the process of adjustment to SCI, and that the majority of people sustaining an SCI go on to lead satisfying and rewarding lives. Furthermore, research has found that the presence of psychosocial adjustment problems following SCI is related more to emotional responses and coping than to injury or impairment variables,⁵ and it has been suggested that psychopathology arises not as a direct result of the spinal injury itself but from the social, environmental, and health problems related to the injury.

Although suicide rates in SCI populations have been estimated to be up to six times higher than in the general population, the reliability of these estimations has been questioned by researchers due to the inclusion of people sustaining spinal injury following a suicide attempt⁶; thus their SCI would likely be due to preinjury psychological difficulties. A retrospective review of mortality in individuals sustaining an SCI following deliberate self-harm found that 24% of deaths were a result of suicide; however, over 60% of deaths could be attributed to medical complications, such as bladder infections.⁶ In the SCI population, indirect forms of self-harm, such as self-neglect, are more prevalent than actual suicide attempts, which in turn can lead to potentially fatal medical complications, such as bladder infections and pressure ulcers (Table 18.1).

Concurrent Traumatic Brain Injury

The majority of individuals sustain SCIs due to traumatic circumstances, such as falls, traffic accidents, and sporting accidents,⁷ and as a consequence it is not unusual for rehabilitation to be complicated by comorbid traumatic brain injury (TBI). Estimates of TBI in the SCI population range from 16 to 59%. However, Macciocchi and colleagues⁸ argue that identification and classification of TBI are varied and at times unreliable. In a prospective study of 198 admissions to a traumatic SCI rehabilitation center, the research group used stringent diagnostic classification measures and found evidence that 60% of patients had also sustained a TBI. Cognitive impairments in attentional processes, memory, and problem solving have been estimated to be present in up to 50% of individuals with SCI.9 The findings highlight the importance of performing early neuropsychological assessment to ensure that additional support is provided and patients’ functional outcomes are maximized in rehabilitation. A review of the complications arising from brain injury highlights how cognitive deficits can interfere with the SCI patient’s capacity to learn new compensatory skills and achieve optimum independence.¹⁰ In addition to the complications arising from traumatic injury and factors like cerebral hypoxia and anoxia, cognitive functions and subsequent rehabilitation outcomes are also affected by preinjury substance or alcohol misuse.

Alcohol and Substance Abuse

Intoxication at time of injury has been implicated in 39 to 50% of SCI cases,^11,12 and preinjury alcohol use patterns are found to be strongly related to consumption following injury. Continued alcohol and substance misuse can have a detrimental effect on the individual’s rehabilitation, leading to longer stays in the hospital and an increased likelihood of depression, pressure ulcers, and urinary tract infections.¹³ Elliot and colleagues¹⁴ found 23% of inpatients had significant alcohol problems and that these individuals not only scored higher on measures of depressive behavior but were over two and a half times more likely to develop a pressure sore in the 3 years following injury. Such variations in outcomes may be understood in terms of the coping strategies employed by people with substance misuse problems, which have been found to differ from those who do not abuse alcohol. Research has found substance misuse to be linked to greater use of avoidance coping strategies and less acceptance of injury,¹⁵ which in turn has been associated with poorer adjustment and increased likelihood of psychological difficulties. Initial screening of patients to assess alcohol and substance misuse is beneficial when providing the enhanced care packages and support that such individuals require during rehabilitation.

In addition to the negative impact on rehabilitation and adjustment, people with alcohol problems report greater pain interference and intensity of pain following injury. Tate and colleagues¹³ conducted a retrospective analysis of 3041 people with SCI and found that the 14% of participants classified as having alcohol abuse problems reported significantly worse pain outcomes and lower life satisfaction scores.

Chronic Pain

Prevalence estimates of chronic pain in SCI vary widely, with estimates ranging from 25 to 45%¹⁶ up to 96%.¹⁷ Pain interference is associated with lower scores on ratings of life satisfaction¹⁸ and quality of life measures.¹⁹ The presence of neuropathic pain has been related to lower scores on measures of physical health status²⁰ and has also been found to have a negative effect on occupational status after injury.²¹ Higher ratings of pain have also been linked to affectivity and psychopathology, such as expressed anger and negative cognitions,²² and higher pain severity has been linked to lower scores on measures of acceptance of injury²³ and greater catastrophizing.²⁴ A study of 190 individuals with SCI by Widerström-Noga and colleagues²⁵ found that a small group of individuals reported a low psychosocial impact of pain despite experiencing moderately high pain severity. When the characteristics of these individuals were explored, analysis revealed higher levels of positive interpersonal support from significant others compared with people with moderately high pain severity and high psychosocial impact. These findings reinforce the importance of social support to many aspects of rehabilitation and adjustment for people with SCI.

Role of Social Supports

Social support has been found to be related to psychological outcomes and adjustment after SCI,26 has been identified as a predictor of early mortality,²⁷ and has been associated with low hopelessness and depression scores.²⁸ Qualitative research provides additional evidence for the importance of social support to the individual learning to live with spinal injury. Both family and peer support have been reported as facilitating the adjustment process, and patient feedback underscores the benefit of services providing informal support and advice to people with SCI throughout rehabilitation.

Following discharge from the hospital, family members often assume the role of primary caregivers, assisting with daily activities, such as feeding, dressing, and transfers, and with personal care, such as bladder and bowel management. Many family members adopt this new role with little or no education and support, and as a result encounter problems with overload, financial strain, impaired quality of life, and health and emotional problems.^29,30

Contrary to early assumptions that assumed parental SCI to have a negative impact on children’s adjustment, research has found children of fathers with SCI to be well adjusted, emotionally stable, and not affected in terms of body image, recreational interests, and personal relationships.³¹ Alexander et al.³² found no significant differences between children of mothers with SCI and children of able-bodied mothers on measures of personality. Ghidini and colleagues³³ investigated the impact of pregnancy and childbearing in women with SCI and found that 96% reported motherhood increased their quality of life and that they would consider having more children in the future. However, although the information available on pregnancy and childbearing during rehabilitation had not influenced the women’s decisions to start families, only 11% of women asked felt that the information they received was adequate.

Sexuality Following Spinal Cord Injury

Following SCI, neurological changes frequently result in sexual dysfunction. Such difficulties can lead to emotional distress for individuals with SCI and have a negative impact on their quality of life. In addition to the changes in sexual function arising as a direct result of spinal trauma, patient concerns about bowel and bladder accidents, their altered body image, autonomic dysreflexia, pain interference, and spasticity have all been reported as factors that discourage the pursuit of physical relationships.³⁴ Using the responses to an Internet-based survey, Anderson and colleagues³⁴ found that the majority of respondents reported that SCI altered their sexual sense of self and that improvements in sexual function would improve their quality of life. Similarly, Phelps and colleagues³⁵ studied married/cohabiting men with SCI living in the community and found that 42% of respondents were dissatisfied with their sex lives and 50% experienced feelings of sexual inadequacy. In the first 18 months following discharge from hospital, sexual activity was reported as one of the areas with which people were most dissatisfied and was clearly an area in which rehabilitation services could be improved by the provision of further support and information.³⁶

Determinants of Quality of Life and Postinjury Adjustment

When comparing ratings on quality of life measures, scores obtained from SCI populations are generally lower than those obtained from the general population.⁵ However, in-depth analysis of these findings has revealed that ratings are linked to secondary complications, activity limitations, and barriers to participation,^37,38 rather than factors relating to the injury itself or degrees of physical ability^39,40; the majority of people with SCI report themselves to be happy and satisfied with life.41 Research has found scores on measures of life satisfaction to be directly related to involvement in productive activities, such as employment, and leisure pursuits.⁴² Qualitative research into quality of life confirms quantitative findings that have highlighted the importance of meaningful relationships, responsibility, sense of control over one’s own life, and engagement in meaningful activity in increasing the individual’s quality of life.⁴³ Psychosocial issues, such as relationships, families, and peer group support,⁴⁴ and psychological factors, such as negative appraisals of disability,⁴⁵ are found to have a greater impact on functional outcomes than the neurological level of injury or impairment severity. A comprehensive review by Chevalier and colleagues⁴⁶ highlighted the important contributory role of appraisals and coping strategies in the long-term adjustment to spinal injury. Negative coping strategies, such as disengagement or avoidance, have been linked to increased levels of depression and emotional distress in persons with SCI,⁴⁷ and decreased levels of life satisfaction and participation.⁴⁸ A paper by Kennedy et al.⁴⁹ examined the relationships between initial appraisals of injury and subsequent coping responses. The study found that people who initially interpret the injury as a challenge are more likely to use adaptive coping strategies, such as acceptance. At 1 year, follow-up scores on measures of quality of life, anxiety, and depression were considerably better for individuals who viewed their injury as a challenge compared with those who initially interpreted their injury as a loss or a threat. The vast amount of literature and research into the relationship of appraisals, coping, and adjustment has led to the development of appraisal and coping measures specific to people with SCI—the Appraisals of Disability: Primary and Secondary Scale⁵⁰ and the Spinal Cord Lesion-Related Coping Strategies Questionnaire.⁵¹ Not only can these measures be used to further our understanding of the adjustment process in people with SCI, but also they can assist in tailoring cognitive behavioral therapies to suit the specific appraisal and coping patterns of the individual.

Cognitive Behavioral Therapy and Other Psychological Interventions

As is the case in other psychological services, cognitive-behavioral approaches are the most commonly used therapeutic intervention in the SCI population due to the strong evidence base for positive outcomes. Cognitive behavioral therapy (CBT) may be used to challenge negative cognitions about disability, support patients during the acute phase of injury, or continue with ongoing care for those with a preexisting history of psychological problems. Craig and colleagues⁵² found that patients receiving CBT during hospital admission were less likely to be readmitted 2 years after injury, less likely to use prescription or illegal drugs, and more likely to report themselves as having adjusted to living with SCI compared with a control group receiving care as usual.

The association between appraisals and coping strategies and scores on measures of anxiety and depression^47,49 has led to the development of psychoeducational intervention programs specifically tailored for use in the SCI population. Coping Effectiveness Training (CET)¹⁵ aims to equip patients with the knowledge and the confidence to apply adaptive coping strategies to managing the changes arising from a spinal injury. A study by Kennedy and colleagues¹⁵ compared patients completing the CET program with those receiving standard care and found significantly reduced anxiety and depression scores in the intervention group compared with controls. In addition to the psychological benefits, qualitative data obtained from patients participating in CET highlighted the importance of group discussion to the newly injured person and the benefit of information sharing with peers, thus reiterating the need for services that provide patients with the opportunity for informal peer support during rehabilitation.

Norrbrink Budh et al.53 developed a comprehensive cognitive, behavioral, and educational program specifically for individuals with SCI and neuropathic pain. Although no significant changes in pain intensity were found following the intervention, results from a 12-month follow-up revealed decreased levels of anxiety and depression compared with baseline measures, suggesting the intervention enabled patients to cope effectively with their pain and to minimize the psychological impact.

Goal Planning

The overarching aim of SCI rehabilitation is to provide the individual with the necessary skills and the confidence to manage the changes and challenges arising from injury. This has been implemented in clinical care with the Needs Assessment and Goal Planning Program, which is integrated into patient care at the National Spinal Injuries Centre (NSIC) at Stoke Mandeville Hospital, Aylesbury, England. Goal setting theory has endorsed the individual’s involvement in the process as essential to its success and maintenance of change. In SCI, the patient may have to relearn basic skills and also acquire new techniques to maintain health in addition to receiving large amounts of information and advice on aspects of their injury. The Needs Assessment Checklist (NAC)⁵⁴ functions to identify areas of need through standardized assessment of knowledge and ability across rehabilitation domains. What differentiates this measure from most outcome measures, and makes it particularly suitable to the SCI population, is the acknowledgment of both physical and verbal independence. From the NAC, key areas of need are identified, and the multidisciplinary team works with the patient in a goal-planning meeting to set clear, identifiable, and achievable goals to work toward during rehabilitation. Following the introduction of the program at the NSIC, patients spent more time participating in therapy and involved in rehabilitation activities, thus demonstrating goal planning to be an effective way of reducing patient disengagement and of increasing their activity levels and involvement in therapy.

Conclusion

SCI is much more than an injury to the spinal cord. It leads to profound changes in everyday life—leisure, activity, employment, and relationships—and has a substantial impact on psychological health and personality. Most people with SCI leave the hospital to return to satisfying and fulfilling lives, enjoy strong and rewarding relationships with family and friends, and participate in a variety of leisure activities. However, for some, the impact on their lives is such that they experience enduring adjustment difficulties that can lead to significant psychological problems. The issues discussed here have highlighted the need for comprehensive, person-centered rehabilitation services incorporating theoretical models of appraisals, coping, and adjustment into therapeutic care.

Related posts:

Principles of Surgical Management of Spinal Trauma Associated with Spinal Cord Injury Peripheral Nerve Grafts and the Repair of Axonal Circuits Following Spinal Cord Injury Posttraumatic Kyphotic Deformity of the Cervical Spine The Human Central Pattern Generator and Its Role in Spinal Cord Injury Recovery Somatosensory Function and Recovery after Spinal Cord Injury: Advanced Assessment of Segmental Sensory Function Considerations for the Initiation and Conduct of Spinal Cord Injury Clinical Trials

Stay updated, free articles. Join our Telegram channel

Join