Spinal cord injury: Multiple family group (MFG) education and support

Introduction

Damage to the spinal cord can be a life-changing event, usually occurring suddenly as a result of an accident, and presenting both acute and long-term medical effects to individuals and their families. Because these events usually happen unexpectedly, suddenly the individual is thrown into the chaos of the health care system. Rarely do people have any idea of the implications on future health, lifestyle, or economic consequences of this kind of event. The impact on the affected individual is profound, producing both paralysis and medical complications to many body systems. Medical prognostication is often uncertain, and many myths surround spinal cord injury (SCI; ).

Epidemiology of spinal cord injury

Over the past 50 years, the age at time of acute spinal injury has increased by a decade or more, but still, the event affects individuals in the prime of their lives, currently averaging 43 years of age ( ). Nearly 80% of all SCI individuals are male. As a result of the age at onset, consequent effects have major socioeconomic impacts on work-lives, family income, and life roles. Despite many improvements in motor vehicles, motor vehicle accidents represent approximately 40% of all SCI cases, with falls accounting for another 30%, gunshots 13.5%, and sports-related causes about 8% ( ). Medical issues such as transverse myelitis and intraspinal hemorrhages account for the remainder. Regardless of cause, the effect is hugely traumatizing.

There are approximately 17,700 new cases of SCI each year, representing an annual incidence of 54 cases per 1 million population. Because the pathology is often lasting, it is estimated that around 300,000 persons with SCI are currently living in the United States ( ). SCI related disability may affect the cervical, thoracic, lumber and sacral portions of the spinal cord structures, with higher level injuries producing more disability ( ). The physical impacts on the spinal cord may produce an incomplete injury with some functions retained or may result in a near-complete loss of function distally. Nearly 60% of all SCIs are at the cervical level producing tetraplegia, and 2/3rds of those are incomplete. Of the 40% remaining injuries producing paraplegia, half are incomplete ( ). Less than 1% of affected individuals experience complete recovery by the time of hospital discharge ( ).

Life impact and medical support

Everyday activities, from prior independence of basic life activities through vocational function undergo massive change. SCI greatly affects a person’s level of independence in mobility, self-care and economic well-being. A little over 30% of affected individuals are married at the time of injury, with 60% single or divorced at injury ( ). While nearly 60% are employed at the time of injury, by the end of year one post-injury only about 12% are ( ). As a consequence, reliance upon social support systems greatly increases. The level of such support systems varies greatly across the United States, rarely covering all the injured person’s needs, especially immediately following injury.

Medical care for acute spinal cord injury has changed significantly over the years, with improvements in surgical and medical management resulting in improved survival. But as the physiologic impacts of SCI are usually long-term, this presents a need for comprehensive rehabilitation in order to strengthen the areas affected and instruct the injured person in self-management skills including dressing, hygiene, toileting and skin care, in addition to teaching mobility skills such as wheelchair use and other supported mobility needs. During the 1970s, most SCI-affected individuals spent months (average 142 days) in inpatient rehabilitation facilities learning these skills, gaining competence in self-management, and educating families and immediate caregivers on appropriate ways of providing needed support. By discharge, these skills had been practiced, needs anticipated and support structures provided. During those years, the average length of stay in an inpatient rehabilitation facility for a cervical cord injury was around 5 months and during this period the individual often had opportunities for weekend passes to practice skills in their home environment. Persons with paraplegia stayed for 2 months or longer, with similar opportunities to practice home skills. During those years, the rehabilitation inpatient staff team frequently included physical therapists, occupational therapists, social workers, recreation therapists, vocational counselors and psychologists to teach, guide and support individuals with SCI in the areas affected by their injury. Health care systems have changed dramatically since then, with the overall average length of stay currently just over 1 month ( ). Rehabilitation staffs have shrunk as well, with only basic therapy needs provided in many American inpatient rehabilitation facilities. Specialty SCI rehabilitation hospitals may have much larger staffs and longer lengths of stay, but funding for such care is not available for many acute SCI patients. As a consequence of these systematic changes in care provision, there are larger burdens placed upon caregivers and patients.

The dramatic compression of lengths of stay result in a much busier hospital day, especially given that nearly 40% of traumatic SCI patients have other injuries in addition to their spinal cord and 80% will have undergone spinal surgeries ( ). There are common co-morbidities including traumatic brain injury and thoracic and abdominal trauma. Focus is on physical recovery, wound healing, pain management and other medical needs, as well as rehabilitation therapies and education. Individuals with significant pain issues have consequent learning difficulties that interfere with the teaching process. The burden of healing, coping, adaptation, and multi-tasking overwhelms even emotionally stable individuals. The cliché of drinking from a firehose is not an exaggeration. The inpatient stay period is intensely stressful for all, patients, spouses, family, and caregivers.

Spinal cord injury after-effects

There are common medical changes resultant from the injury. Bladder management poses issues for about 75% of individuals with SCI, with a variety of urologic adaptations needed, including intermittent catheterization, indwelling catheters, or some form of urinary diversion ( ). Medical complications of these alternative solutions may include subsequent urinary tract infections ( ). Bowel management may also pose issues, requiring modifications of typical routines, medications and physical techniques which may necessitate caregiver aid. Education regarding skin care is an essential part of the inpatient training process, but follow-through is critical post-discharge and this too may pose caregiver burden, especially if pressure sores occur ( ). The need for family and caregiver education is critical to support the person with an acute SCI both medically and with mobility needs.

The preponderance of SCI survivors (87.4%) are discharged to a private home ( ). Architectural accessibility of the home to mobility limitations more often than not presents significant problems, especially for those with higher level injuries. Thus, architectural barriers are routinely problematic, as 60% of individuals with SCI rely on a wheelchair for mobility, including both manual and powered chairs ( ). In many homes, bedrooms are upstairs, bathrooms are small and inaccessible to wheelchairs and entry and exit present their own challenges. Steps and stairs, narrow doorways, cupboards, and toilet areas cause difficulties for most at discharge. Only rarely is funding for architectural modification available. Transportation poses a common problem, as many vehicles are difficult to enter and exit for someone in a wheelchair and public transportation is often unavailable, especially for rural residents.

The changes in spinal cord injury care over the past decades are many, with some good news in reduction of medical complications, more sophisticated spinal surgery resulting in enhanced neuro recovery and better understanding of medical needs. But there is also less positive news in terms of the reduction in lengths of stay resulting in less opportunity for patient and family education, less medical oversight in the months immediately following the injury and less emphasis on community re-entry education. Community support systems are insufficient. As a consequence of these latter issues, the Multifamily Group Education (MFG) process poses a real opportunity in the long-term approach to the many problems posed by SCI.

Impacts of SCI on family caregivers

There is nearly always a need for caregiver support of people with SCI. For married individuals, this usually falls to the spouse, placing both physical and substantial emotional demands. For unmarried persons, often this role falls to the family and obviously such support varies greatly in time, interest and ability. The caregiving position encompasses more than physical assistance and often includes educating, advising, financially supporting, advocating for and becoming the prevention / management specialist for the injured family member ( ). Family caregivers are thrust into learning much of this on the fly and often don’t know how to accomplish all the necessary tasks. As a result, they often become as, or more stressed and overwhelmed as the person with SCI by the added responsibility and adjustments needed to their daily lives. They can experience frustration, isolation and feelings of guilt, as well as resentment toward the injured family member they care for ( ). Qualitative research on the experience of family caregivers for people with SCI indicates that caregivers experience deterioration in their relationship with the person who has SCI and that they require intentional re-building and maintaining of their relationships ( ). Spouses who become caretakers of an SCI injured partner have been found to have significantly more depressive affect than their spouse with SCI and have significantly more physical and emotional stress, burnout, fatigue, anger and resentment, depressive affect and somatic depression than spouses who are not caregivers ( ). Negative psychological and physical health impacts on caregivers have been indicated across countries and cultures ( ).

In an examination of the unique contribution of social support to SCI caregiver burden researchers have found that social support, social interactions, and social integration are significant predictors of caregiver burden, suggesting that interventions such as MFG that promote social support, interaction, and integration hold the potential to decrease caregiver burden ( ). There is a pressing need for individualized education, support and coaching not only for individuals with SCI, but also for their caregivers, particularly when those caregivers are family members ( ). This need begins immediately and should be in place upon discharge from the hospital.

Impact of multiple family groups (MFG) on psychiatric outcomes

Chronic health conditions require multiple adjustments for both those afflicted and their family caregivers. They are invariably extremely isolating conditions that require coping skills both by patients and their family caregivers. There is now accumulated evidence over a number of decades which supports the idea that, for a number of chronic conditions, a combination of education, support and problem-solving services improves rehabilitative outcomes, community supports and in some cases reduces caregiver burden ( ; ; ). Chronic conditions such as severe mental disorders ( ; ; ), brain injury ( ; ; ), mild cognitive impairment ( ) and chronic pain ( ) have all been studied. A pioneering approach which served as a model for our intervention for SCI was developed by McFarlane in the late 70s for the management of schizophrenia ( ). The intervention called multiple family group (MFG), provides education, support and problem-solving activities to six to eight persons with schizophrenia and their respective family members. The treatment process is a structured interactive format consisting of two mental health clinicians to assist families and patients to improve coping, social support and illness management skills. McFarlane initially enrolled in-patients with schizophrenia and their family caregivers in a 2-year long intervention. The intervention focused initially on preventing relapse and then gradually shifted focus to rehabilitative and occupational goals with community supports. MFG prevented relapse and re-hospitalization and improved rehabilitation outcomes (cf. ), relative to single family groups, and MFG became an evidence based best practice in mental health. In the 1990s, psychiatric hospitalization stays became increasingly shorter and more infrequent as treatment services for persons with severe mental illness shifted to the community. We therefore adapted the MFG intervention to a community mental health care setting ( ). We enrolled persons with schizophrenia receiving outpatient services and their family members into a two arm randomized clinical trial comparing a 2-year MFG intervention to Standard Care and demonstrated that relative to standard care, relapse, negative symptoms and hospitalization care and costs were all reduced ( ; ). We also found reductions in family caregiver burden and distress ( ).

Adapting multiple family group treatment for brain and spinal cord injury

Approximately 15 years ago Becker, Dyck and colleagues sought to adapt MFG for persons with traumatic brain injury (TBI) and SCI. Below we summarize that treatment development process and the quantitative and qualitative outcome evidence supporting these efforts ( ). We reasoned that although the medical conditions and social and behavioral features of schizophrenia are unique, there are also common themes such as chronicity, the need for illness management skills and community supports and extensive impacts on the family support system. It is also the case that these conditions occur most often in younger age groups, resulting in significant functional disability and restriction of vocational options. These conditions also share the increased risk of social isolation and altered family roles to support the affected individuals. We therefore initiated a field development project to adapted MFG for TBI and SCI. The MFG protocol followed the original model ( ). The stages included (1) joining with patients and the families through several individual sessions, (2) conducting an educational workshop, and (3) teaching management skills for physical and cognitive challenges as well as improving psychosocial functioning and supports through the use of structured problem-solving group sessions. The group sessions lasted approximately 75–90 min and each consisted of: socialization, go-around, problem identification, and problem solving. We retained the structure and format of the original model but modified the content to accommodate the unique issues of TBI and SCI. For example, during the joining sessions we gathered information on the injury event, its impacts on the patient and the family, how and how successfully they were coping with the adjustments and setbacks. The educational workshop covered neuroanatomy basics, aspects of physical rehabilitation and the support and coping responses to the injury needed by patients and family members. In the problem-solving session, the go-arounds often focused on medical complications, equipment concerns and needs, challenges to travel and caregiver issues. The complete intervention lasted between 12 and 18 months and included initially bi-monthly and then monthly meetings. Two clinicians led each group. The clinicians were experienced physical, speech, and occupational therapists and mental health clinicians (social workers and psychologists). Overall, the results were encouraging. For patients, life satisfaction for patients improved over 18 months ( Fig. 1 ). Patients also reported a decrease in depressive symptoms and anger expression. Among family caregivers, burden was reduced ( Fig. 2 ). Focus groups and qualitative analysis further supported the idea that the MFG experience led to a normalization of the caregiving experience, provided important informational and social support and improved the coping and management skills of both injured persons and their caregivers. Several limitations of this initial effort were that, being a treatment development study, the sample was small, there was no control group and the drop-out rate was approximately 20%. In retrospect, the drop-out rate could be the result of a combination of factors: not enrolling participants early enough after the injury, the length of the intervention, and transportation and related logistic issues.

Comparison of MFG to educational control (EC)

We have recently completed a small randomized clinical trial comparing MFG to an active Education Control ( ). In an effort to improve treatment retention, we shortened the MFG group to 9 months and recruited participants within 3 years of their injury. All participants were provided a copy of the 4th Edition of the book titled: Yes you can: a guide to self-care for persons with spinal cord injury ( ). We block randomized participants (SCI outpatients and their caregivers), in groups of three or four dyads, to either MFG or EC. Participants with SCI and their caregivers were assessed both with psychometrically validated quantitative measures at baseline, at the conclusion of the 9-month intervention and 6 months following the interventions. Focus groups were conducted with all participants at the end of the intervention to determine participants’ perceptions of the value of the overall experience, how helpful it was and recommendations for improvement. SCI participants were eligible if they had a paraplegic or quadriplegic injury with complete or incomplete lesion; were discharged from inpatient rehabilitation within 3 years, were living in the community in a non-group setting, at least 16 years old, had a mobility impairment and planned to remain in the geographic area for at least 12 months. SCI caregivers were eligible if they were the primary instrumental and/or emotional support person for a spouse, partner, relative, or friend with SCI, spent at least 2 h of face to face contact per week with the participant, lived with or near the participant with SCI, were at least 18 years old, and planned to remain in the geographical area for at least 12 months. Exclusion criteria included terminal illness with life expectancy of less than 12 months, being in active cancer treatment and cognitive impairment. An overview and global comparison of MFG and the EC interventions is provided in Table 1 . The primary difference was that MFG was an interactive experience that provided education, support, and individualized problem solving to participants, while the EC condition was a typical didactic classroom experience with limited opportunity for interaction or individual problem solving. The EC condition covered the topics in the “Yes, you can” book. While content for the MFG condition was loosely based on the book, participants had considerable voice in selecting what problems were identified for problem solving in the sessions. The content comparison between the MFG and EC interventions is shown in Table 2 . Treatment integrity in both conditions was supported by videotaping, weekly supervision, and treatment manuals. The results generally supported what we observed in the earlier treatment development study.

Table 1

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