Understanding the complex post-acute care needs of people with violently acquired traumatic injuries
Presenter Name: Thilo Kroll, PhD & Marcus Bell
Institution: National Rehabilitation Hospital Center for Health and Disability Research
Primary Research Interests: Violence and spinal cord injuries, Health outcome disparities, Peer to peer mentoring, Community-based health education and habilitation, Mixed methods research
In 1995, Seelman and Sweeney made a case for a changing universe of disability that also challenges the traditional scope and portfolio of medical rehabilitation. Some of these changes are summarized in the bullets below.
Changing universe of disability based on Seelman & Sweeney (1995) (Kroll, Palsbo, McNeil, 2001).
- Disabilities resulting from a new set of primary conditions (e.g. neurological consequences of HIV)
- Newly recognized disabling sequelae of successfully treated primary conditions (e.g. secondary malignant tumors)
- Disabilities resulting from ineffective long-term management of primary conditions (e.g. permanently reduced lung function in asthma; neuropathies cardiovascular complications in diabetes)
- Conditions resulting from improved emergency care (e.g. SCI/TBI)
- Multimorbidity following survival of primary condition (e.g. cancer, heart disease, arthritis)
- Conditions with a higher disability incidence and prevalence resulting from disparities in access to health care and prevention/rehab services including self-management (e.g. asthma, diabetes)
- Aging/sociodemographic changes of the population with increase in the prevalence of disabilities (e.g. arthritis, stroke, cardiovascular problems, cancer-related disabilities)
- Changes in the workplace technology paired with unequal access to assistive equipment (e.g. strain injuries such as carpal tunnel syndrome)
- Disabilities resulting from an expanded conceptual understanding of and awareness for 'disability' (a multidimensional model of disability)
This universe has indeed changed, in both quantitative and qualitative terms. It is not only a question of greater numbers of people who objectively live with disabling conditions due to greater exposure of risk factors that could produce these conditions or advances in medical therapy that have improved survival rates at the price of physical, sensory, and cognitive impairment. Disability classifications (e.g. ICDIH2) have undergone extensive revisions, increasingly differentiate between disabling conditions at multiple levels, and consider the consequences of injury or illness within the context of the interactions between individuals and their living environments. This qualitative expansion of existing definitions naturally has implications for epidemiological counts. But a qualitative change is also a matter of increased awareness for disabling conditions, especially of those that manifest themselves in the shadow of the media’s limelight. Violence causing traumatic injury and lasting disability is one example. Media reports tend to focus on fluctuations in the mortality rates due to gun violence. Rarely, attention is directed towards the sequelae of violence, life-long disability with costly personal and societal implications. Occasional in-depth media coverage of “high profile” acts of white middle class violence, i.e. in the form of school-related shootings are by far surpassed by the impact of gun violence in low income, inner-city areas that often do not even reach the column of local newspapers. Awareness for disabling acts of violence and their consequences is another element of the changing universe of disability.
Violence is the second leading cause of spinal cord injury (24.5%) in the United States after motor vehicle accidents (38.5%) (National Spinal Cord Injury Statistical Center, 2001). It is the leading cause of SCI in young, urban African American males from low SES backgrounds. Violence is more likely to result in more complex neurologically complete injuries.
The first part of the presentation will frame the issue of post-acute care needs of people with violently acquired spinal cord injury based on the concept of the ‘changing universe of disability’. We will then proceed to present some selected research findings. In the second part of the presentation, we will illustrate the benefits of participatory action research in developing a better understanding of the rehabilitation context of people with VASCI.
Specifically, this presentation will reflect the following research objectives
- To describe and contextualize the physical, psychological and social consequences of violently acquired spinal cord injury from the perspective of people with VASCI and the people who provide rehabilitative services to them.
- To identify rehabilitative support and intervention needs of people with VASCI, both from the perspective of VASCI survivors and health care professionals.
- To illustrate how participatory action research can be used to improve the ecologic validity of research findings.
In our research, we use a mixed method design (QUAL – QUAN), including both qualitative and quantitative research methods (Creswell, 2003). In this presentation, we will focus on the qualitative component consisting of a
- Qualitative exploratory study; inductive hypothesis-generating approach
- Participatory action approach (“VASCI survivor consultant”)
- All data were collected at the National Rehabilitation Hospital and the MSA of Washington DC.
- In-depth interviews with 25 VASCI survivors who reside in the community, and 11 clinicians
- 2 sets of interviews with VASCI survivors
The QUAN component will consist of a systematic evaluation of current VASCI rehabilitation practice at hospitals nationwide. Our presentation will include newer findings from an AHRQ funded study that built upon the initial work completed under our NIDRR grant.
VA SCI Survivors
VASCI survivor respondents were all but one African American males (one woman, one Latino) with a median age at the time of the interview of 25 years (min 20; max 39 years). Their median age at the time of injury was 19 years (min 15; max 32 years). In our study both high, cervical C2 (quadriplegic) and low, lumbar L1 injury levels (paraplegic), neurologically complete and incomplete were represented.
Nine of the 11 rehabilitation professionals were women. Their work experience with spinal cord injury extended from four to 14 years. The following rehabilitation disciplines were represented in this study: one physician, two rehabilitation nurses, two physical therapists, two occupational therapists, one rehabilitation counselor/discharge planner, one social worker/case manager, one psychologist, one vocational rehab counselor.
Post-acute care needs trajectories of VASCI survivors are complex and need to be understood within on a multidimensional framework of person and socioenvironmental context factors. Figure 1 illustrates the multidirectional interdependencies of socioenvironmental context that affect rehabilitation outcomes.
Figure 1. Complex interaction of personal and socioenvironmental context factor in relation to post- acute care and rehabilitation.
In our presentation, we will only focus on selected issues.
Medical inpatient rehabilitation for the most part works well to restore function and to prepare individuals with VASCI physically for life after discharge from the rehabilitation. However, problems exist in the continuation of medical follow-up services. Many of these problems are associated with barriers that also hamper successful community integration, including unstable family support systems, inaccessible homes, unsuitable transportation, and lack of insurance and financial resources.
While for the most part, physical needs are addressed during the inpatient rehabilitation treatment of VASCI survivors, little time and resources exist to address the post-discharge needs of VASCI survivors in social environments that are mostly unknown to health professionals. Various factors stand out for VASCI survivors that negatively impact their chances for a successful medical rehabilitation and community integration.
The question of re-integration for the VASCI survivor is correlated with the question of what community or social environment is most conducive to positive long-term rehabilitation outcomes. Reintegration may not always mean that the individual returns to the environment in which the violently induced injury occurred. The need for identifying an accessible, safe, and supportive living environment may in fact preclude a return to the ‘old’ neighborhood. Old bonds and relationships with peers and friends may be severed. However, the reintegration process is multilayered and complex. For instance, the level of injury may play a role in how relationship altering the injury becomes. Social integration largely depends on the level of injury and the quality of pre-injury relationships. Someone with a low injury may walk out of the hospital with a sense of invulnerability, while someone with a high level injury may experience a dramatic change in multiple areas of his or her life.
Low-income residential inner-city areas are the least accessible, are often located in locations that are not served as frequently as others by accessible public transportation. The scarcity of family resources make adaptations to apartments and houses impossible or such modifications would require lengthy application processes with local housing authorities. Due to the shortened length of inpatient rehabilitation, families have even fewer days to even attempt modifications to the living environment. Even if patients are discharged to live with their family members, they may not be able to reach the degree of personal independence that would be possible in barrier-free housing environments. Front entrances may have steps that require assistance to overcome, hallways may be too narrow to navigate in a power wheelchair, and family members may not be available to provide support with transfers from bed to wheelchair when needed. In effect, this leaves many VASCI survivors “stranded” in their homes. It places obstacles in their way to pursue social, educational, or employment-related opportunities, and it prevents them from keeping appointments with physicians, and rehabilitation therapists.
Safety is another concern besides accessibility. Violence in the neighborhood that produced the injury in the first place may further limit opportunities for social participation.
One of the major challenges in securing long-term success of the rehabilitation efforts is to identify a stable caregiver and support environment. Families of VASCI survivors frequently do not follow the ‘synthetic’ concept of a nuclear family as it applies to white middle class families with father and mother present and two children. Some VASCI survivors have become parents themselves at a young age but have remained unmarried to the mother of their children. Other survivors live with one parent and their siblings in small homes or they live with other family members such as grandparents, aunt and uncles etc. The stability of their family support may also vary, and sometimes it is questionable whether the person identified as primary caregiver would be able to provide suitable support.
Some VASCI survivors are reluctant to return home because they fear that their family would be at a heightened risk for additional violence. Others prefer to move to a nursing home to maintain their independence and because they want to avoid placing the responsibility for their care on their parents and other family members.
Education and Employment
In the current rehabilitation environment, vocational rehabilitation services that include counseling and training are extremely curtailed. The shortened length of stay has focused rehabilitation resources on the restoration of function. Long-term goals such as improving educational and employment opportunities for people with VASCI are hampered by the lack of funding for these services during the initial inpatient stay. At the same time, VASCI survivors frequently have fewer years of formal education, are less likely to have a high school diploma or a college degree than individuals with spinal cord injuries due to other causes. Also, many have had – due to their young age at the time of the injury – fewer years with gainful employment. Employment before injury is frequently linked to physically demanding jobs, such as construction, and goods delivery. Consequently, the have fewer economic resources, and are more likely uninsured. Employment after the injury in most cases necessitates re-training or training for a new field of employment, which is not associated with physically demanding chores. Employment counselors of community-based employment agencies often have little knowledge about spinal cord injury, and underestimate the abilities, resourcefulness, and developmental potential of VASCI survivors.
Participation in Action
The NRH CHDR has made several efforts to systematically develop its participatory action competence over the years. Under the current NIDRR-funded grant, we have been hosting two research internships involving people with VASCI. The first internship by Steven Ferguson culminated in a widely popular peer-to-peer information brief on family and relationship issues after VASCI. The peer-to-peer brief is available at this conference and on our Web site (http://www.nrhchdr.org). The second internship will also conclude with a consumer driven publication. Marcus Bell has further been involved in the planning, development, and analysis of the research findings, we just presented. He will speak about what the research community would gain by increasingly involving people with disabilities from currently marginalized groups in the research process.
Figure 2. Multiple roles of the VASCI survivor consultant on the study.
The greatest challenges in the rehabilitation of people with VASCI after discharge are the lack of insurance coverage, the absence of effective vocational rehabilitation opportunities, and the shortage of accessible, affordable, and safe housing. A major, crosscutting factor that has implications for all rehabilitation and community integration efforts is income. Most VASCI survivors are young. Many are injured before they complete high school, and enter vocational training or college. The vast majority of VASCI survivors remain on social security, uninsured or reliant on public coverage after their injury. Living in inappropriate housing conditions again increases the risk for medical complications, and consequently for costly hospitalizations. At the same time housing-related barriers restrict community integration, educational opportunities, social participation, and personal independence. Currently, nursing homes appear to be the option that on average is associated with the best odds for avoiding medical complications, increased mobility, and personal independence. Unfortunately, most nursing homes do not cater to the needs of young urban adults, and may not have the resources to focus on their educational and employment-related needs.
Problems also still exist with continuous and comprehensive long-term follow up of patients in the outpatient clinic. While the hospital offers transportation assistance it far too frequently happens that follow-up appointments are not kept or outpatient therapy cannot be maintained as needed. Community outreach programs such as peer-to-peer mentoring are viewed favorably by clinicians and patients alike and could serve as the missing link between medically focused inpatient rehabilitation and community-oriented outreach efforts.
It is in society’s interest to improve continued, comprehensive access to long-term rehabilitation services for people with VASCI in order to prevent costly secondary medical complications, and to assist VASCI survivors with their reintegration into society, education, and employment.
At both the theoretical and practical level it may be useful to replace the traditional concept of ‘rehabilitation’ with a context, context-sensitive, individual-centered habilitation approach. Habilitation is less oriented towards restoration of physical function and more focused on enhancing the developmental potential, abilities and skills within a variable community context, and in close collaboration between people with disabilities and the health care provider community (Ozer & Kroll, 2002).
Figure 3. Habilitation framework.
An advocacy and participatory action orientation can benefit research efforts in providing marginalized health care consumers with a ‘voice’ in shaping policy and research agendas. Furthermore, they are positive ways to form knowledge partnerships that are beneficial to researchers, consumers and policy makers.
At the policy level, we need to improve insurance coverage for needed health care services in order to facilitate speedy community reentry. We also need to strengthen the links between hospital based and community based vocational rehabilitation services. This again relies on better coverage for vocational rehabilitation counseling, and requires community-based agencies that are knowledgeable about disability and spinal cord related needs.
- Rehabilitation research needs to extend beyond the hospital walls and professional community-based programs, and focus on peer-to-peer support efforts
- Future research needs to be based on a mixed methodology approach
- People with disabilities from marginalized groups need to be included at all steps of the research process to obtain meaningful, context-sensitive, and multidimensional results
- Need to improve coverage for needed durable medical equipment and rehabilitative therapies for maintenance under public programs (Medicaid)
- Need to extend and enforce accessibility requirements to subsidized public and low income housing
- Need to improve community-based access to vocational rehabilitation, training, and counseling opportunities
- Need to re-conceptualize post-acute care efforts as prospective, context-sensitive, developmental person-focused habilitation
- Expand peer-to-peer community outreach programs as efficient and effective links between hospital-based services, community-based support, and the individual with a disability
What Implications Do Your Research Or Training Project Findings Have For Changes In Concepts Of Health And Disability?
Health and Disability need to be conceptualized with in a multidimensional framework that includes person-level and socioenvironmental context factors.
The sociodevelopmental concept of ‘habilitation’ might be suitable to better reflect the dynamic, context-dependent needs trajectories of people with VASCI and other disabilities
Creswell, J.W. (2003). Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. Thousand Oaks: Sage, 2nd Edition.
Kroll, T., McNeil, M. & Palsbo, S. (2001). Emergent Disabilities: New Challenges in the Field of Rehabilitation and Research. Presented at the American Public Health Association’s 129th Annual Meeting, Atlanta, GA.
Ozer, M. & Kroll, T. (2002). Patient-centered rehabilitation: Problems and Opportunities. Critical Reviews in Physical Medicine and Rehabilitation. 14(2-3), in press.
Seelman, K. & Sweeney, S. (1995). The changing universe of disability. American Rehabilitation, 21, 2-13.