Pediatric Rehabilitation, July 2005; 8(3): 187198

Behavioural treatment of non-compliance in adolescents with newly acquired spinal cord injuries

JO ANNE GORSKI, KEITH J. SLIFER, VANESSA TOWNSEND, JENNIFER KELLY-SUTTKA & ADRIANNA AMARI
The Kennedy Krieger Institute, Maryland, USA

Abstract Purpose: To demonstrate the efficacy of using differential reinforcement to treat non-compliance in adolescents with spinal cord injury. Method: A case series design was used to examine three adolescents (aged 1416 years) with tetraplegia who received multidisciplinary rehabilitation treatment and a behavioural contract programme during an in-patient hospital admission. Assessment included collecting data on each patients weekly percentage of compliance with all rehabilitation goals, weekly percentage of negative affect observed in therapy sessions and scores on a measure of mobility in physical therapy. Results: Compliance with rehabilitation demands improved from a baseline of 2065% to 80% or greater after the patients received differential reinforcement for participating in the rehabilitation regimen. Patients exhibited less anger, sadness and frustration during therapy sessions once contracts were started. Conclusions: The adolescents demonstrated greater compliance after the implementation of a behavioural contract. Future studies should identify the specific variables that affect psychological adjustment and predict readiness to participate in rehabilitation.

Keywords: Spinal cord injury, compliance, behavioural contract, behaviour modification.

n en la sito: Demostrar la eficacia de usar refuerzos diferenciales para tratar la desobediencia en adolescentes con lesio Propo dula espinal. me a, que todo: Un disen o de series de casos fue usado para examinar a tres adolescentes (edades de 1416 an os) con tetraplej Me n multidisciplinario y un programa de contrato de comportamiento durante la recibieron un tratamiento de rehabilitacio n de un paciente hospitalizado. La evaluacio n incluyo la recoleccio n de datos acerca del porcentaje semanal de admisio n a la metas de rehabilitacio n, el porcentaje semanal de efecto negativo observado en obediencia de cada paciente en relacio n de la movilidad en la terapia f sica. las sesiones de terapia, y los marcadores de la medicio n mejoro de una l nea base de 2065% a 80% o mayor despue s de Resultados: La obediencia con la demanda de rehabilitacio gimen de rehabilitacio n. Los pacientes exhibieron que los pacientes recibieron un refuerzo diferencial para participar en el re n durante las sesiones de terapia una vez que los contratos iniciaron. menor enojo, tristeza, y frustracio s de la implementacio n del contrato de Conclusiones: Los adolescentes demostraron una mayor obediencia despue n identificar a las variables espec ficas que afectan los ajustes psicolo gicos y comportamiento. Los estudios futuros debera n. predicen el estar preparado para participar en la rehabilitacio

Introduction Spinal cord injuries (SCI), which are most commonly due to motor vehicle accidents, violence or falls, overwhelmingly afflict young adults. Of the nearly 11 000 new SCIs which occur each year, $20% are accounted for by individuals younger than 20 years of age with children less than 15 years comprising $35% of the total [1,2]. Spinal cord injuries may be classified according to the level

of the injury, as specified by the American Spinal Injury Association motor scoring system, which is used to predict physical functioning outcomes [3]. Medical research has been making progress in the prevention and treatment of SCIs by examining the SCIs interaction with organ systems, spinal cord regeneration, treatment outcome, psychosocial consequences for children and families and assistive technology devices. Some promising findings have shown that the injured spinal cord has significant

Correspondence: Jo Anne B. Gorski, Department of Psychiatry and Psychology, Blythedale Childrens Hospital, 95 Bradhurst Avenue, Valhalla, New York 10595, USA. Tel: (914) 592-7555 ext. 425. Fax: (914) 592-4776. E-mail: joanneg@blythedale.org Received for publication 12 August 2003. Accepted 4 May 2004. ISSN 13638491 print/ISSN 14645270 online 202213 2005 Taylor & Francis Group Ltd DOI: 10.1080/13638490400021438

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J. A. Gorski et al. viding adequate pain relief, decreasing sensory and sleep difficulties, reassuring patients with thorough medical explanations, prescribing psychotropic medications when necessary and psychotherapy. These methods have been effective at increasing psychological adjustment in patients with traumatic injuries [9]. By treating the emotional and physical consequences of a traumatic physical event, it is expected that greater compliance with rehabilitation will follow. Children appear to experience the greatest amount of distress when their selection of coping strategies does not match the actual probability of being able to control stressors in their environment [10]. Primary control [11] and problem-focused [12] coping both refer to overt behaviours that attempt to alter the external environment, while secondary control [11] and emotion-focused [12] coping refer to more internal or cognitively mediated efforts to modify subjective interpretations of existing environmental conditions. It has been shown that a childs cognitive ability to evaluate the probability of changing or controlling a stressor significantly impacts his or her selection of effective coping strategies [10]. Children who employ secondary control (cognitive coping strategies) when the stressor is, in fact, uncontrollable show evidence of the best overall behavioural adjustment. Emotion-focused coping, such as positively reframing a problem, maintaining a positive attitude and having a sense of mastery over daily tasks, has a direct effect on emotional well-being and an indirect effect on disease management by facilitating better problem-focused coping [12, 13]. Therefore, an adolescent with a newly acquired SCI who identifies and utilizes cognitive strategies to cope with their disabilities may have the most positive adjustment outcome. However, he or she may also learn new ways of affecting the environment from within the physical constraints of their injuries, such as instructing nurses how to perform their care. The psychological literature on the behavioural adjustment of children and adolescents with SCIs is very limited. To date, there have been no controlled treatment outcome studies and only a small number of published reports on clinical treatment and psychological variables that affect this population. Depression is the most common behavioural disorder in adults with SCI and has been related to longer hospital stays, less progress in rehabilitation, less functional independence and more days in bed after discharge [1416]. Adults with poor premorbid adjustment, including substance abuse, psychiatric symptoms, family dysfunction and previous suicide attempts, show greater risk for depression following SCI [17], while individuals with an internal locus of control (or sense of having control over the environment), good problem-solving skills,

physiological and biochemical changes when individuals attempt to relearn motor tasks and how new neural networks must develop in order to execute movements [4]. The physical sequelae of SCIsimpaired mobility/ sensation, bowel/bladder dysfunction, respiratory problems and painoften require an extended stay at a rehabilitation hospital. According to the National Spinal Cord Injury Statistical Center (NSCISC), the average length of stay at a rehabilitation hospital for individuals 21 years of age or younger with high tetraplegia (C1C4) is 91 days, while those with low tetraplegia (C5C8) stay $103 days [5]. These patients must follow a structured daily schedule, including nursing and medical care, occupational and physical therapy, assistive technology and communication training in order to achieve maximum independence. Individuals with tetraplegia, in particular, must adjust to life-long changes, such as not being able to ambulate or move themselves, requiring a ventilator to breathe (for injuries above C4) and having others assume their personal care. However, they are expected to participate in a rigorous schedule of therapies and nursing care relatively soon (usually within 3 weeks) after they have been injured. This experience of uncontrollable and unpredictable negative events may lead to inappropriate means of regaining control in the environment. Adolescents with SCIs have been observed to exhibit negative affect, regressed behaviours and greater focus on appearing normal [6]. Anger, anxiety, depression, grief and reluctance to accept their injuries may manifest as behavioural problems, such as refusing to eat, disrupted sleep, poor information retention, verbal aggression and non-compliance with rehabilitation therapies and nursing care. These behaviours may be seen as attempts to escape an aversive situation, namely their diagnosis and prognosis, as well as the discomfort of their medical and rehabilitation regimens. They may develop learned helplessness because attempts at controlling the environment are now less effective. As a result, patients may appear to be unmotivated to comply, since they have received little reinforcement for attempts at coping and compliance. For example, being able to take one bite of food using an adapted self-feeding device may be less reinforcing than previous functioning allowed. Compliance in children with chronic illnesses and adults receiving rehabilitation has been related to educational background, history of substance abuse, social support, ethnicity, the difficulty of the treatment regimen and patient/family characteristics [7, 8]. Physical, pharmacological and psychological interventions may be implemented to overcome some of the barriers of complying with rehabilitation. Treatment for trauma patients has focused on pro-

Treatment of adolescents with spinal cord injuries goal-directed activity and hope exhibit less distress [1820]. In addition, adults who believe they are unable to make changes in their lives or affect their environment have been found to be significantly depressed 2 years after the SCI [20]. Suicide has been found to explain 510% of all deaths of people with SCI, while it occurs in only 1% of the general population [21]. In addition to depression, other psychological problems may develop or be exacerbated by a newly acquired SCI and consequently may impede progress in rehabilitation therapy. Anxiety has also been shown to be significantly greater for people with SCI [22] and is related to the rehabilitation process and community re-integration. The trauma of a SCI has recently been associated with the onset of posttraumatic stress disorder (PTSD). The prevalence of PTSD in children who have experienced a traumatic event ranges from 315% in girls and 16% in boys [23]. Risk factors for the development of PTSD in children include age, gender, family characteristics and the experience of major life stressors. Adolescents with PTSD may exhibit similar symptoms as adults, including flashbacks/nightmares, emotional numbing, depression, anti-social behaviour, peer/academic difficulties, isolation and sleep disturbances. Some degree of psychological distress is expected following a SCI, but pre-morbid functioning may play an influential role in the degree that is experienced. The disability-stress-coping conceptual model was developed to identify factors which influence childrens adjustment to a physical disability [24]. Adjustment problems may be related to disease or disability parameters (medical problems, bowel/bladder control, cognitive functioning, handicap severity), functional independence and psychosocial factors (handicap-related problems, major life events, daily problems). Consistent with this model, mobility and perceived health consistently predicted life satisfaction in adults 2 years post-SCI [25]. The risk factors for childrens adjustment to a disability can be directly or indirectly affected by resistance factors, such as intra-personal factors (temperament, competence, motivation, problem-solving skills), social-ecological factors (family environment, social support, family adaptation, resources) and the ability to manage stress (cognitive appraisal, coping strategies). In support of this, children with chronic illnesses are at greater risk for maladjustment in the presence of maternal depression, family stressors and low family cohesion [26]. The adjustment of children with SCI may be influenced by family support, positive family coping styles and successful pre-morbid social functioning, including personality type, peer relationships, academic performance, recreational activities and family/ community support [27].

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The literature describes psychological treatment of individuals with SCI as consisting of individual and family therapy, peer counselling and consultation with rehabilitation staff. Cognitive-behavioural programmes have been shown to effectively decrease anxiety and depression in adults with SCIs by altering negative self-appraisals in order to perceive greater control over the consequences of their injuries [28]. Warzak et al. [29] discussed an effective cognitive-behavioural approach to anxiety management in a child with tetraplegia. Previous studies on children with other medical problems have demonstrated the success of behaviour modification programmes for improving compliance with aversive medical regimens [5]. Specifically, adjusting environmental conditions to include positive consequences for compliance with difficult medical tasks has been useful for teaching appropriate responses and achieving functional goals [3032]. The purpose of the current study is to demonstrate the efficacy of differential reinforcement to treat non-compliance in adolescents with tetraplegia using a multidisciplinary team approach and to highlight some of the complex clinical considerations of treating this population. Method Subjects and setting Three adolescents (aged 1416 years) with complete injuries at C1C4 levels were in-patients on a 24-bed hospital unit, which specializes in neurorehabilitation treatment for children and adolescents with a variety of medical diagnoses and recent traumatic injuries. The participants were admitted after they received acute medical care for their injuries at other hospitals. The multidisciplinary team consists of physicians, nurses, social workers, teachers, occupational, speech, physical, assistive technology and therapeutic recreation therapists. A paediatric psychology consultation-liaison service provides consultation to this unit at the physicians request and is staffed by psychologists and psychology interns. Fictitious names are used to protect the confidentiality of the patients. See Table I for a detailed description of patients injuries and resulting medical complications. Patient 1. Martha is a 16-year-old African-American female who sustained a gunshot wound through her jaw, resulting in a C-2 fracture in her spinal cord. She followed simple commands with her eyes during the first week post-injury and attempted speech within 3 weeks. During the hospitalization at the rehabilitation centre, she experienced episodes of hypoxia which were characterized by visual and

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Table I. Description of patients injuries and medical complications. Martha Age/gender Injury Some medical complications 16/Female Gunshot wound in jaw; C-2 fracture Extended LOC*, comatose for 1 day, poor respiration, TBI, ventilator-dependent 9 weeks No memory for accident and for 1 week post-injury Depression and aggression Dan 15/Male Motor vehicle accident; SCI C5C6 Deep vein thrombus in one lung, neurogenic bowel & bladder, liver damage 3 weeks No evidence of a brain injury Cindy 14/Female Hit by a motor vehicle; SCI C1C2 LOC* at scene; respiratory arrest, liver & kidney damage, brain haemorrhage, fractured leg bones, splenectomy, ventilator-dependent 10 weeks No memory for accident and for 2 weeks post-injury Mother-child conflict, ADHD, anxiety, depression, delinquency

Time from injury to rehabilitation Post-traumatic amnesia

Pre-morbid psychosocial history

Significant mother-child conflict

* LOC loss of consciousness.

sensory hallucinations and an inability to recognize familiar persons. The possibility of a traumatic brain injury (TBI) was difficult to ascertain due to the cognitive effects of multiple medications, multiple incidents of pneumothorax requiring respiratory care and periods of absent or depressed respiration. A full neuropsychological battery was difficult due to her compromised medical status, difficulty with speech and low frustration tolerance. Although she had not received standardized testing prior to her injury, she appeared to have low-average intelligence. She had consistently received average grades until she reached high school, where she began to fail her classes. She received a 10th grade education, but discontinued school. Her performance on tests in the hospital indicated low average verbal skills, impaired verbal learning and memory and poor ability to name common objects. Reports of Marthas behaviour prior to the injury suggested significant emotional and behavioural concerns. It was reported that she had made at least one suicide attempt and had several serious aggressive altercations. Although her behaviour was not formally assessed prior to the injury, descriptions of her behaviour suggest that she experienced several episodes of depression and had been taking antidepressant medication. She reportedly experimented with alcohol, but denied regular substance use. During the hospitalization, Martha appeared to be depressed with an extremely labile mood. She had difficulty sleeping at night and her behaviour was somewhat disinhibited. She was verbally aggressive toward staff and spit at them if she did not want to comply with demands. She exhibited anxiety, depression and low self-esteem, made suicidal statements to staff and made one attempt to expel her tracheostomy. She was taking several pain medications as well as antispasmodic and a new antidepressant medication. Since her sensory hallucinations (i.e. seeing her legs separate from her body,

feeling bugs crawling on her skin) continued throughout the hospitalization, this suggested the possibility of a psychotic disorder associated with her depression. Marthas family visited her frequently, although there appeared to be a large degree of family discord. Their religious beliefs motivated them to hope for a miracle so that Martha could walk out of the hospital. Patient 2. Dan is a 15-year-old African-American male who sustained a SCI at C5C6 as an unrestrained passenger in a motor vehicle accident. There was no evidence that he sustained a TBI. Prior to his transfer to the rehabilitation hospital, he was started on antidepressant medication due to flat affect and withdrawn behaviours. Dan also displayed periods of anxiety and frustration which affected his concentration and memory. He was found to have some symptoms of PTSD, but did not meet full criteria for this disorder. He exhibited some denial related to his injury and stated, I am going to walk out of the hospital. Prior to his injury, Dan was attending the 10th grade and was reported to be active, athletic, musically talented, popular and well-mannered. No pre-morbid emotional or behavioural problems were noted during an interview with his mother on the Child Behaviour Checklist (CBCL) [33]. He did indicate having a significant conflict with the only parent in his life, resulting in his moving in with another close relative a few months prior to the accident. His mother visited only a few times while he was at the rehabilitation hospital for work-related reasons and these visits were characterized by negative interactions between his mother and staff. Dans school records indicated he received average grades in school across subjects. The results of intellectual testing completed during his hospitalization determined that his verbal skills fell within

Treatment of adolescents with spinal cord injuries the low-average range. Dan demonstrated moderate impairment for immediately recalling semanticallyrelated verbal information, while he was mildly impaired in learning a list of unrelated words. However, his cognitive organization/problemsolving abilities and visual-spatial skills were solidly average. Assessment

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Patient 3. Cindy is a 14-year-old Caucasian female who was struck by a motor vehicle causing a C1C2 SCI. In addition to medical complications outlined in Table I, she experienced fevers for $2 weeks and was unresponsive to the environment at this time. Subsequent to this episode, she was able to visually track movement, started to mouth some words and used eyeblinks to communicate. Cindys emotional and behavioural functioning was evaluated during the hospitalization. She had been diagnosed with Attention-Deficit Hyperactivity Disorder (ADHD) 1 year prior to her injury and had been taking psycho-stimulant medication, which was continued in the hospital. Her mother indicated on the CBCL [33] that Cindys pre-injury functioning was characterized by anxious and depressed behaviour, attention problems, delinquent behaviour (i.e. stealing, running away) and verbal aggression. Her mother reported having a conflictual relationship with Cindy, although she was the only living parent. Cindy reported having chronic insomnia and exhibited anxiety about medical issues (i.e. getting enough oxygen from the ventilator, transfers with the Hoyer lift and introduction to assistive technology equipment). An anxiolytic was prescribed to help with these issues, but she remained somewhat anxious for the remainder of her admission. Cindys cognitive functioning before and after her injury was also examined. She completed the 9th grade and received good but variable grades, reportedly depending on whether she liked the teacher or the subject matter. Her mother discussed a family history of attention, learning, depression and anger management difficulties. Cindy, in particular, was said to be forgetful and fidgety, lost track of time and failed to complete homework assignments prior to her injury. A neuropsychological evaluation was conducted to determine her level of cognitive functioning. The results indicated that she did not have cognitive sequelae that would support the occurrence of a TBI. Her scores were consistent with reports of pre-morbid functioning. Specifically, her verbal and non-verbal problem-solving abilities, attention, visual-spatial skills, executive functioning, expressive and comprehensive language and verbal memory were all within the average range of functioning.

Direct observations indicated that all were noncompliant with aspects of their rehabilitation regimen, including uncomfortable transfers to their wheelchair, getting out of bed or co-operating with therapy sessions. Non-compliance in patients with tetraplegia involved verbal refusal to co-operate, yelling or cursing. Other behaviours, such as spitting (which was specific to Martha), appeared to develop in response to staff attempts at enforcing rehabilitation activities. It appeared that staff often provided patients with additional attention for these behaviours and allowed patients to delay or escape demands because of them. Several factors were identified which maintained or exacerbated the incidents of non-compliance.
.

Loss of control over the environment and related grief due to loss of physical functioning; Extinction of attempts to control the environment or to utilize pre-injury coping strategies since there is no reinforcement for doing so; Exposure to negative medical stimuli on a non-contingent basis (i.e. the aversive stimulation occurs on a schedule that is independent from patient responding); Positive reinforcement for non-compliant behaviours (i.e. received attention, reprimanding or cajoling from staff and caregivers for inappropriate behaviours); Lack of contingent reinforcement for appropriate behaviours; Coping skills deficits (i.e. did not use distraction or relaxation skills that may have been helpful); Inadequate social support (caregivers either visited infrequently or family conflicts occurred in addition to isolation or rejection from peers); Cognitive deficits related to TBI or affective symptoms (i.e. Cindys anxiety caused her to have difficulty retaining information); Progress toward therapy goals was disrupted due to medical complications or staff concerns regarding emotional or psychiatric functioning; Ambivalence about following the medical regimen related to denial about permanence of physical injuries; and Staff having unrealistic or inconsistent expectations for what constitutes acceptance of disabilities and patient compliance.

Procedures Initial treatment. Due to the ethical requirement to provide immediate psychological services to patients with newly acquired SCIs, a true baseline with no systematic behavioural intervention could not be

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J. A. Gorski et al. and resolving conflicting perspectives about behaviour management between different staff members. During a 3-week period immediately preceding the implementation of the contracts, the average weekly percentage of compliance with all rehabilitation goals was calculated for each patient.

ascertained. Therefore, psychotherapy with patients and staff intervention was started immediately upon admission. Throughout the hospitalization, the psychologist (or psychology intern) worked with each patient $35 times per week for 3060 minute sessions in order to facilitate coping with their injuries. Content of sessions focused on modelling appropriate responses to the patients non-compliant behaviours for staff, assisting staff in gradually exposing patients to new assistive equipment and providing training in cognitive-behavioural pain management strategies. Sessions also focused on teaching coping skills to patients since they had such limited ability to affect the environment. They learned cognitive strategies, such as reframing negative thoughts and practiced appropriate verbal responses toward caregivers through role plays. The psychologist developed a list of written recommendations within the first 3 days of admission and gave them to nursing and rehabilitation staff to encourage consistent responses to the patients, thereby facilitating an increase in compliance and a decrease in inappropriate behaviours. These included: praising patients for compliance, maintaining a consistent schedule, providing warnings for schedule changes or transitions, ignoring inappropriate comments and verbal prompts to state demands clearly. Making the environment more predictable was expected to decrease negative affect about the lack of control the patients were experiencing. During each patients admission, the psychologist provided verbal instruction on managing patients feelings and behaviours during two instructional sessions with the nursing staff and individual sessions with multidisciplinary therapists. Specifically, the training focused on providing the rationale for consistency in enforcing limits, not attending to inappropriate vocalizations, modelling appropriate responses to the patients non-compliance and statements about anxiety, anger or hopelessness

Behavioural contract. The psychologist developed and implemented a behavioural contract, shown in Table II, with the collaboration of all therapists, the physician and the patient to increase overall compliance with prescribed therapies. The patients parents were aware of the contracts, but did not participate in their development. The contract concretely outlined the daily rehabilitation tasks that were expected, such as wake-up time, completion of personal care, number of transfers, amount of time required in the wheelchair and co-operation with goals in multidisciplinary therapies. This served to make the environment more structured, predictable and consistent. Compliance was p measured by staff and nurses recording whether ( ) or not () the patients co-operated with each scheduled task in their daily, prescribed activities. This contract was slightly modified for each patient to address the tasks that were most challenging. Once treatment was started, the psychologist provided daily verbal and visual feedback to the patients about their compliance. At the end of the week, the behaviour contract was reviewed with the patients to determine their percentage of compliance with rehabilitation demands by reviewing the data on the daily schedule sheet. Differential reinforcement was provided to each patient (i.e. CDs, posters, make-up, gift certificates) for completing an average of 80% or greater of their rehabilitation tasks without negative vocalizations (or spitting). Patients did not receive a tangible reinforcer if they did not achieve 80%, but responsecost was not used (i.e. previously awarded tangibles

Table II. Daily behavioural contract of rehabilitation goals.              Woke up at 7 : 00 am and tolerated am care (bathing, toileting, dressing, eating) by 9:30 am on Sat and Sun Tolerated stetching of lower extremity Tolerated placement; wearing ankle-foot orthosis and upper extremity splints Tolerated transfer to wheelchair and in wheelchair (>6 hours) Tolerated daily body repositioning Tolerated Hoyer lift (1 a day) or Squat and pivot transfer Participated in school Participated in physical therapy (stretching, strengthening) Participated in speech and language activities (talking, environmental controls) Participated in therapeutic recreation activities. Choice between activities or social conversation Participated in behaviour psychology Participated in occupational therapy (activities of daily living, environmental controls) Tolerated PM care (bowel programme, skin checks, tracheostomy care)

Treatment of adolescents with spinal cord injuries

Initial Treatment 100 90 80 70 Average Percentage 60 50 40 30 20 10 0 1 2 3 4 5 6 7 8 9 Weeks 10 11 12 13 14 15 Brief discharges to acute care hospital Behavioural Contract

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Negative Affect Compliance Mobility

Figure 1. Martha: average weekly compliance, negative affect and physical mobility.

were not taken away when the 80% criterion was not met). Progress in physical therapy. The physical therapists completed a measure based on a 15 continuum which assesses mobility and ability to tolerate positioning, seating, standing, walking, transferring and need for adaptive equipment and caregiver training. The maximum score on this measure is 100 points. Lower scores indicate a more severe disability. Negative affect. The medical chart was reviewed to determine a weekly percentage of interdisciplinary therapy sessions during which patient anxiety, depression, anger or frustration was observed. Results Patient 1 Marthas contract was implemented 11 weeks after starting rehabilitation. During the first few weeks of her admission, she had been briefly discharged to an acute care hospital on two occasions because of compromised respiratory status. Her initial average weekly compliance ranged between 2030%. As shown in Figure 1, Martha demonstrated an immediate response to the behavioural contract and achieved the 80% criterion for compliance for the remainder of her admission. Her negative affect remained variable, but decreased on average after the contract was implemented. Her negative affect prior

to the behavioural contract was observed in 81% of her therapies, but was noted during only 62% of sessions after the contract started. Her scores on the physical therapy scale had achieved the estimated goal score by the 9th week of rehabilitation. Due to the severity of her post-injury physical limitations, she made no further gains in mobility. Martha was discharged to a long-term nursing facility as the first step in her transition back home. At a 3-year follow-up phone call, she was reportedly living at home, had completed her graduate equivalency diploma and had relatives caring for her on a rotating schedule. Information related to her current emotional and behavioural status was not provided. Patient 2 Dans behavioural contract was implemented after 13 weeks of rehabilitation treatment. His precontract compliance ranged from 5060%, but increased to greater than 90% for the rest of his hospitalization after his contract started (see Figure 2). His negative affect remained variable, but, toward the latter part of his admission, he had several weeks in which no anger, frustration or sadness was observed by his therapists. The average number of reports of negative affect before the contract was 53% of therapy sessions and this decreased to 24% after the contract began. During the 19th week, his negative affect increased dramatically as a result of removing a task in physical therapy (i.e. use of pronestander) which Dan associated with the possibility of greater physical recovery. Dans score on the physical

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Initial Treatment
100 90 80 70 Anger about changes in PT goals

Behavioural Contract

Average Percentage

60 50 40 30 20 10 0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 Mobility Negative Affect Compliance

Weeks

Figure 2. Dan: average weekly compliance, negative affect and physical mobility.

Initial Treatment
100 90 80 70 Average Percentage 60 50 40 30 20 10 0 1 2 3 4 5 6

Behavioural Contract

New demands placed

Brief Discharge to Acute Care Hospital

Mobility Negative Affect Compliance

9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 Weeks

Figure 3. Cindy: average weekly compliance, negative affect and physical mobility.

therapy measure steadily increased throughout the admission and the increasing trend was not impacted by the introduction of the behavioural intervention. Dan was discharged first to his mothers care while he attended a day hospital rehabilitation programme. Then, he moved to an assisted-living group home. He continued high school and became involved with a community organization that provided adapted sports for persons with disabilities. He continued to exhibit mild depression and anxiety related to his

care at the group home, but this did not prevent him from attending school and social outings nor did he require psychiatric medication. Patient 3 Cindys behavioural contract was started on the 6th week of her stay at the rehabilitation hospital. Figure 3 shows that her average weekly compliance had initially been $6065%. She also demonstrated

Treatment of adolescents with spinal cord injuries a clear response to the behavioural programme and her average weekly compliance increased to 80% or greater for 19 of the 21 recorded weeks. She fell below the 80% criterion during the 23rd week, most likely due to significant psychosocial stressors. Her second admission occurred after she was transferred to another hospital due to acute medical needs. The behavioural contract was changed late in her second admission since staff placed a new demand on her (i.e. she was expected to leave her room for therapy sessions). The behaviour contract was changed to incorporate this new demand and the following week she demonstrated an immediate response to this change as she achieved a weekly average of 91%. By the end of her admission, she was participating in 100% of her rehabilitation tasks. There were 3 weeks of missing data for Cindy when staff did not consistently complete her compliance record and, therefore, a percentage could not be calculated. Verbal reports indicated that she had been fully compliant. Therapists observations of her affect indicated that she was emotionally variable. Staff records of her negative affect decreased over time. On average, 75% of the notes mentioned negative affect before the contract. The average decreased to 49% after the contract started. Cindys physical therapy scores had been steadily increasing until her medical complications adversely affected her ability to tolerate therapies. As shown in Figure 3, some of her physical abilities had declined. Because her admission focused on medical problems late in her admission, the physical therapist no longer recorded scores on the rating scale. At the time of discharge, Cindy had made improvements in her use of adaptive equipment, but required verbal prompts to utilize adaptive environmental controls regularly. Cindy was discharged to the home of a family friend who assumed the responsibility for her care. At a 3-month follow-up contact, it was reported that she was doing well, participating in school, talking with friends and had generally positive affect. She still required encouragement to leave the house and to fully take advantage of her adaptive equipment. However, Cindy and the caregivers family were all participating in psychotherapy to assist them with the adjustment. Discussion There have been few empirical studies which investigate the effects of psychological intervention on children with SCI. This study sought to examine the use of behavioural contracts with adolescents who have newly acquired SCIs in a multidisciplinary rehabilitation setting and to quantify its effects on compliance, affect and mobility. Similar behavioural

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programmes utilizing other paediatric chronic illness populations have been successful. Overall, the data provides positive evidence for using differential reinforcement with adolescents having recent SCI in order to increase compliance with rehabilitation demands. All three patients demonstrated improvements in overall compliance with their medical and rehabilitation regimens when the contract was implemented. The exigencies of an in-patient unit where staff characteristics and therapy demands vary from day-to-day made it difficult to eliminate all incidents of non-compliance. During the initial part of the patients hospitalizations, the staff were excessively empathic toward the patients due to their traumatic and profound decrease in physical functioning. They often provided bootleg reinforcement (preferred, but noncontingent items and activities) to patients with SCIs, such as buying them jewellery, clothes, food, having lengthy social conversations with them and generally giving them special treatment. However, their well-intended compassion often resulted in staff attending to inappropriate behaviours and allowing the patients to escape demands. The patients may have learned that negative vocalizations, refusal and other disruptive behaviours (i.e. spitting) would delay or allow escape from fully participating in their rehabilitation regimen which was effortful and sometimes physically uncomfortable. Staff were susceptible to taking behavioural issues personally and would react strongly to them (i.e. discussions, scolding, cajoling), which may have inadvertently maintained them. The behavioural contract served the dual role of stating the duties for both patients and staff, which staff may have independently had difficulty performing. For example, a nurse may have let a patient sleep in, but with the wake-up time clearly stated in the contract, the expectation was now on him or her to get the patient out of bed. By staff setting limits on patients behaviour, it decreased shaping of inappropriate behaviours. The incidents of non-compliance had also served to increase the patients control over the environment. Once they were given greater input into the development of their rehabilitation schedule and received preferred items contingent upon compliance, they appeared to have decreased oppositional reactions related to lack of control over the environment. When patients received delayed but powerful differential reinforcement for compliance, they may have increased their motivation to cope with the immediate anxiety and discomfort of rehabilitation demands. This provided increased opportunities for the patients to receive positive comments related to their level of compliance, which had the reciprocal benefit of improving interactions with staff. As staff provided more verbal praise, the patients were less

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J. A. Gorski et al. hospitalizations, the patients struggled with psychosocial stressors, both pre-morbid (i.e. family conflict, school problems, caring for a child as a teen parent) and current (i.e. anxiety about who will care for them and whether they will live at home vs. an assisted-living situation). They experienced a broad range of intense emotions, including depression/ grief about loss of physical functioning, anger about perceived peer rejection and anxiety about how the community would respond to their disabilities. Each patient had significant variability in affective expression from week-to-week, but, on average, all three had reduced negative affect after the behavioural contract was started. The extent to which premorbid functioning may play a role in adjustment should be further studied. It may be useful to compare children with SCI who are compliant with those who are non-compliant to identify those risk/ resistance variables that may predict behavioural outcome. The clinical consultation format limited the ability to systematically collect baseline data, which limits the confidence with which definitive conclusions can be drawn from the results. It may be difficult to determine whether patients improvements in compliance and affect are related to increased motivation due to the behavioural contract or acceptance of their disabilities as a function of time since their injuries. This could be a possible confound in the study, although there was a clear behavioural change immediately following the implementation of the behavioural contract. Although a reversal design may have been helpful in answering this question, it would have been unethical to remove an intervention that was seemingly benefiting patients. Further, even if the contract had been removed, the patients may have already started to experience the natural reinforcement contingencies, such as progress in multidisciplinary therapies or more positive staff interactions. The hypothesized maintaining variables were also not systematically measured, but rather based on anecdotal reports by staff. Some of these concepts are novel and ways of measuring them have not yet been determined. For example, a patients pre-disposed locus of control may influence what coping strategies are utilized and, consequently, can affect the ability to adjust to a SCI. Finally, staff compliance with the behavioural recommendations was not systematically documented to verify the accuracy with which they carried them out. Future studies require greater control and measurement of staff behaviour. Although a larger sample size and differing duration of observations in the initial treatment condition would have more definitively demonstrated the efficacy of behavioural treatment with this population, this multiple case study may be

likely to express anger through inappropriate or noncompliant behaviours. As a result, the patients could benefit from their therapies by learning ways of increasing independence and greater control over the environment. Adolescents who already struggle with attaining independence, integration into the community, peer acceptance and the formation of an individual identity may become demoralized when faced with a SCI. They are required to actively participate in a rigorous schedule of therapies while they are simultaneously attempting to accept the reality of their injuries, cope with the emotional ramifications of them and begin to develop a new identity that assimilates their disabilities and medical needs. In other words, patients are expected to begin physical rehabilitation before they have adjusted to the permanence of their injuries. By participating in rehabilitation, patients may feel they are giving up hope for further recovery. French and Phillips [34] suggested that the emotional adjustment of patients with SCIs largely occurs after they leave the hospital. Nevertheless, some adjustment must occur in the hospital in order for patients to participate in and benefit from their rehabilitation programmes. The extent to which behavioural contracting may be applied to paediatric patients in other medical or rehabilitation settings with more typical lengths of stay is not definitively answered by this study. All three of the patients had unusually long hospital stays (i.e. > 3 months) related to medical complications, identifying caregivers who could receive requisite nursing care training or determining where they would be discharged (i.e. home vs. assisted-living facility). The behavioural contracts were introduced later in the rehabilitation process for two patients related to poor medical status and initial resistance to the idea. However, given that the third patient demonstrated an immediate response to the intervention, there is, at least, some evidence that it may be useful in children with shorter hospitalizations. It should also be noted that, although compliance in therapies and tolerance of difficult rehabilitation tasks increased with the contracts, this did not appear to be related to progress in rehabilitation (i.e. PT). On some level, the compliance that resulted from the contracts may have eased staff anxiety about the patients progress toward rehabilitation goals, although in actuality it may not have been related. However, the relationship between compliance and actual progress in rehabilitation warrants further study. The risk/resistance factors outlined by Wallander et al. [24] was applied to the patients in this study. Because the patients all had high percentages of risk factors due to the severe nature of their injuries, adjustment was more challenging. Throughout their

Treatment of adolescents with spinal cord injuries useful in highlighting areas for further study. For example, how do we know when a patient is ready to participate in rehabilitation? Adjustment to having an SCI requires some level of rehabilitation demands being placed on patients in order for them to begin facing realistic views about their ability to recover. Readiness for rehabilitation may be conceptualized as a continuous variable of adjustment to having a SCI that may be monitored systematically over time and used to guide therapy demand levels. It would be beneficial to develop a more objective approach to monitoring affect, knowledge and beliefs to track readiness or adjustment. The relationship between compliance with rehabilitation and psychological adjustment (defined as affect stability, socially appropriate behaviours and realistic beliefs about their injuries and recovery) should also be examined further. Possible mediating variables, such as coping history, pre-morbid psychosocial stressors and social support, should also be investigated. In summary, there is much to learn about what influences psychological adjustment in children and adolescents with SCIs so that rehabilitation therapies and behavioural interventions may be implemented with greater efficacy and efficiency.

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References
1. National SCI Statistical Center. SCI: Facts and figures at a glance. Birmingham, AL: NSCISC; 2001. 2. Vogel LC, Devivo MJ. Etiology and demographics. In: Betz RB, Mulcahey MJ, editors. The child with a spinal cord injury. Rosemont, IL: American Academy of Orthopaedic Surgeons; 1996. pp. 312. 3. Yarkony GM, Kohlmeyer K. Functional outcomes in pediatric spinal cord injury. In: Betz RR, Mulcahey MJ, editors. The child with a spinal cord injury. Rosemont, IL: American Academy of Orthopaedic Surgeons; 1996. pp. 699707. 4. Edgerton VR, De Leon RD, Harkema SJ, Hodgson JA, London N, Reinkensmeyer D, Roy R, Talmadge R, Tillakaratne N, Timoszyk W, et al. Topical review: retraining the injured spinal cord. Journal of Physiology 2001;533: 1522. 5. Devivo MJ, Whiteneck GG, Charles Jr ED. The economic impact of spinal cord injury. In: Stover SL, Delisa JA, Whiteneck GG, editors. Spinal cord injury: Clinical outcomes from the model systems. Gaithursberg, MD: Aspen Publishers; 1995. pp 234271. 6. Warchausky S, Engel L, Kewman D, Nelson V. Psychosocial factors in rehabilitation of the child with a spinal cord injury. In: Betz RR, Mulcahey MJ, editors. The child with a spinal cord injury. Rosemont, IL: American Academy of Orthopaedic Surgeons; 1996. pp. 471482. 7. Lemanek KL, Kamps J, Chung NB. Empirically supported treatments in pediatric psychology: regimen adherence. Journal of Pediatric Psychology 2001;26:253275. 8. Richards JS, Kewman DG, Pierce CA. Spinal cord injury. In: Frank RG, Elliott TR, editors. Handbook of rehabilitation psychology. Washington, DC: APA: 2000. pp. 1128. 9. Mohta M, Sethi AK, Tyagi A, Mohta A. Psychological care in trauma patients. Injury 2003;34:1725.

10. Forsythe CJ, Compas BE. Interaction of cognitive appraisals of stressful events and coping: testing the goodness of fit hypothesis. Cognitive Therapy and Research 1987; 11:473485. 11. Weiscz JR, McCabe MA, Denning MD. Primary and secondary control among children undergoing medical procedures: adjustment as a function of coping style. Journal of Consulting and Clinical Psychology 1994;62:324332. 12. Lazarus RS, Folkman S. Stress, appraisal and coping. New York: Springer; 1984. 13. Band EB, Weisz JR. Developmental differences in primary and secondary control coping and adjustment to juvenile diabetes. Clinical Child Psychology 1990;19:150158. 14. Malec J, Neimeyer R. Psychologic prediction of duration of inpatient spinal cord injury rehabilitation performance of self care. Archives of Physical Medicine and Rehabilitation 1983;77:995999. 15. Tate DG, Forchheimer M, Maynard F, Dijkers M. Predicting depression and psychological distress in persons with spinal cord injury based on indicators of handicap. American Journal of Physical Medicine and Rehabilitation 1994;73:175183. 16. Umlauf RL, Frank RG. A cluster-analytic description of patient subgroups in the rehabilitation setting. Rehabilitation Psychology 1983;28:157167. 17. Tate DG. Alcohol use among spinal cord injured patients. American Journal of Physical Medicine and Rehabilitation 1993;72:192195. 18. Elliott TR, Godshall F, Herrick S, Witty T, Spruell M. Problem-solving appraisal and psychological adjustment following spinal cord injury. Cognitive Therapy and Research 1991;15:387398. 19. Elliott TR, Witty T, Herrick S, Hoffman J. Negotiating reality after physical loss: hope, depression, and disability. Journal of Personality and Social Psychology 1991;61: 608613. 20. Craig A, Hancock K, Chang E, Dickson H. The effectiveness of group psychological intervention in enhancing perceptions of control following spinal cord injury. Australian and New Zealand Journal of Psychiatry 1998;32:112118. 21. Devivo MJ, Kartua PL, Stover SL, Rutt RD, Fine PR. Cause of death in patients with spinal cord injuries. Archives of Internal Medicine 1989;149:17611766. 22. Hancock KM, Craig AR, Dickson HG, Chang E, Martin J. Anxiety and depression over the first year of spinal cord injury: A longitudinal study. Paraplegia 1993;31:349357. 23. Cohen J. Practice parameters for the assessment and treatment of children and adolescents with posttraumatic stress disorder. Journal of the American Academy of Child and Adolescent Psychiatry 1998;37:10:9971001. 24. Wallander JW, Varni LV, Babani HT, Banis HT, Wilcox KT. Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped children. Journal of Pediatric Psychology 1989;14:157173. 25. Putzke JD, Richards JS, Hicken BL, DeVivo MJ. Interference due to pain following spinal cord injury: Important predictors and impact on quality of life. Pain 2002;100: 231242. 26. Daniels D, Moos RH, Billings AG, Miller JJ. Psychosocial risk and resistance factors among children with chronic illness, healthy siblings, and healthy controls. Journal of Abnormal Child Psychology 1987;15:295308. 27. Parnell MA. When a child is physically disabled: Impact on the child and family. SCI Psychosocial Process 1991; 4:1621. 28. Kennedy P, Duff J, Evans M, Beedie A. Coping effectiveness training reduces depression and anxiety for traumatic spinal cord injuries. British Journal of Clinical Psychology 2003;42:4152.

198

J. A. Gorski et al.
32. Slifer KJ, Tucker CL, Gerson AC, Sevier RC, Kane AC, Amari A, Clawson BP. Antecedent management and compliance training improve adolescents participation in early brain injury rehabilitation. Brain Injury 1997;11: 877889. 33. Achenbach TM. Manual for the child behavior checklist/4-18 and 1991 profile. Burlington, VT: University of Vermont; 1991. 34. French JK, Phillips JA. Shattered images: recovery for the SCI client. Rehabilitation Nursing 1991;16:134136.

29. Warzak WJ, Engel LE, Bischoff LG, Stefans VA. Developing anxiety-reduction procedures for a ventilator-dependent pediatric patient. Archives of Physical Medicine and Rehabilitation 1991;72:503507. 30. Gorski JB, Westbrook A. Use of differential reinforcement to treat medical noncompliance in a pediatric patient with leukocyte adhesion deficiency. Pediatric Rehabilitation 2002;5:2935. 31. Palermo TM, Scher MS. Treatment of functional impairment in severe somatoform pain disorder: a case example. Journal of Pediatric Psychology 2001;26:429434.