Introduction

Spinal cord injury (SCI) is a complex condition that challenges an individual’s societal reintegration. Little is known about the lived experiences of people with SCI and their support persons as they seek knowledge about their injury, interventions, and prognosis for recovery.

Challenges to sufficient and appropriate care

Attaining sufficient and appropriate care in the United States after SCI is increasingly difficult. Scholars report that significant changes in healthcare since the early 1990s have resulted in shorter periods of inpatient rehabilitation following SCI [1,2,3,4]. Coupled with shorter periods of acute care management prior to entering inpatient rehabilitation, people with SCI are discharged into the community earlier, and perhaps more acutely ill than ever [3, 5]. As a result, increases in rehospitalizations due to complications from secondary conditions such as urinary tract infections, pressure injuries, and pneumonia [6, 7] have been observed during the first year following injury [3, 5, 8, 9]. Additionally, increased transitions across healthcare institutions risk continuity of care [10]. Despite significant attention to shortened lengths of acute inpatient rehabilitation (AIPR) in the late 1990s to early 2000s, recent attention to this phenomenon has waned in contemporary SCI literature.

In the quest for sufficient and appropriate care, people with SCI and their support persons face barriers accessing appropriate health and rehabilitative services in the community, ranging from limited knowledge about SCI among non-specialized practitioners to inaccessible offices, examination tables, scales, and diagnostic equipment [3, 11,12,13,14]. Inaccessible environments prevent important interventions such as weight assessment, colonoscopies, pelvic examinations, mammograms, and bone density examinations 14. Additional barriers are posed by insurance. For example, people who rely on Medicaid after SCI may have difficulty finding physicians who accept patients with Medicaid insurance [15]. These multifarious barriers, resulting in inequities in care, are social justice issues [16]. The current state of post-acute SCI rehabilitation is one in which people return to their communities with fragile health, reduced capabilities, and barriers to accessing specialized care.

Defining sufficient and appropriate care

Consequences of paralysis have significant health and social implications for people with SCI and their families as they navigate the recovery process within a medical model-influenced healthcare system. For the purposes of this study, sufficient and appropriate care after SCI refers to addressing medical and rehabilitation needs in a comprehensive and timely manner to maximize functional recovery and minimize complications from secondary conditions. Comprehensive, in this definition, refers not only to the broad range of services required by a person with SCI, but also to the length of time that such services may be necessary, including AIPR and post-acute rehabilitation interventions.

Health insurance and welfare in the United States

The complex U.S. health insurance and welfare systems are comprised of public and private components and can significantly influence access to sufficient and appropriate care after SCI. More than half of U.S. citizens under the age of 65 years secure health insurance privately through their employers, who often subsidize costs while requiring beneficiaries to pay a certain portion [17,18,19]. Private insurance often features public benefits [20]. For example, individuals who purchase health insurance through employment can benefit from federal tax policies that exclude the purchase from taxation [18, 21]. Public health insurance programs include Medicare for individuals 65 and older or younger individuals with certain disabilities, and Medicaid, a joint federal-state program for economically disadvantaged individuals. Approximately one-quarter of Americans access coverage through Medicaid or plans purchased privately, such as those made available through the Patient Protection and Affordable Care Act (PPACA) [17, 22]. Other forms of health insurance coverage include worker’s compensation benefits received in cases of work injuries, or Veterans health benefits for those with a qualifying history of military service.

Medicaid waiver programs provide home and community-based services and are distinct from Medicaid health insurance. There are more than 300 active waiver programs nationwide, offering services such as case management, personal care assistance, home modifications and equipment, and respite care [23]. Additional resources include Social Security Disability Income (SSDI) and Supplemental Security Income (SSI). SSDI provides financial benefits based on employment history, available to individuals with a disability who have accumulated a sufficient number of work credits. SSI, a safety-net program that provides a minimum income, is available to low-income individuals who have not worked or have not earned enough work credits to qualify for SSDI. Programs such as Medicaid and SSI have narrow income eligibility restrictions.

The goal of this study is to investigate the experiences of individuals with SCI as they navigate rehabilitation, resources for recovery, and community reintegration during the first year after injury.

Methods

Institutional Review Board approval was obtained prior to conducting this study at a rehabilitation hospital located in the midwestern region of the United States. After informed consent, a series of in-depth semi-structured interviews were conducted over the course of one year. Participants were recruited during AIPR following a newly-acquired SCI. Eligible participants were age 18 years or older, lived within 200 miles of the rehabilitation center, and were able to communicate in English. Purposive sampling was used to recruit a diverse cohort in terms of age, sex, race, and severity of injury.

Interviews were conducted approximately every other month for one year. First interviews took place at the rehabilitation center. Subsequent interviews were conducted at a location chosen by the participant, or by phone if preferred. The initial interview queried information about the circumstances of injury and the participant’s life prior to injury, including family relationships, occupational history, and interests. Baseline information about insurance status and social benefits (i.e., Social Security Disability Income, Worker’s Compensation benefits) was obtained. Subsequent interviews omitted baseline questions. Every interview addressed the following broad topics: things that have/have not been going well, current needs, greatest concerns, greatest challenges, and expectations. At each follow-up interview, participants were asked about changes in insurance or eligibility for other resources since the previous interview. Interviews were audio-recorded and transcribed verbatim.

Data were analyzed using a constructivist grounded theory approach, which departs from traditional grounded theory by including active and equal engagement of participants in the research process and acknowledging that pre-conceived notions of the researchers influence the process [24, 25]. Interpretation was also guided by the transformative paradigm, which examines power and social structures within and across institutions and gives voice to people at risk for marginalization [26, 27]. Transcripts were reviewed multiple times to ensure familiarity with the data, and content was analyzed for emerging themes within and across participants. Analytic memo writing was undertaken to further analyze content [28]. Participants were engaged in the analytic process through informal discussions about reported phenomena, and frequently asked to provide feedback about emergent themes. This approach not only ensured accuracy of the data, but further advanced the collective voice of the study cohort.

Results

Demographics

Twenty participants with SCI enrolled between July 2017 and November 2019. Demographics and injury characteristics are shown in Table 1. The majority of participants are male and the median age is 43 years (range 18–64), comparable to SCI demographics in the United States [29]. The most common cause of injury for this cohort is fall, followed by vehicular accidents.

Table 1 Participant Demographics.
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Emergent themes consisted of trajectories of medical and rehabilitative care, including transitions across care institutions; experiences in AIPR and discharge uncertainty; discharge to SNFs; and experiences seeking resources in the community.

Trajectories of medical and rehabilitation management after spinal cord injury

Trajectories of post-injury medical and rehabilitation management varied across participants. Nine of 20 participants were transported to a level one trauma center immediately following injury. The remaining eleven participants were transported to a local community hospital for stabilization before transfer to a level one trauma center. Eight of the 20 participants were admitted to the acute level one trauma center affiliated with the Model SCI System within 24 h of injury and subsequently transferred to the AIPR unit. The remaining twelve were admitted to the Model System AIPR unit between four and 76 days (median 26) post-injury.

Figure 1 illustrates experiences of two participants with incomplete cervical SCI, contrasting a complicated (1B) and uncomplicated (1A) course of care. Significant to the complicated trajectory is the number of transitions within and across different healthcare institutions. Transitions include transfers from the site of injury to acute care, to inpatient rehabilitation, to the emergency department or medical surgical units for medical complications, or temporary transfers to SNFs or long-term acute care hospitals. Over half of the participants in this cohort experienced five or more transitions prior to discharge to home or alternative discharge setting (Table 1). The average number of transitions was five (range two – eleven).

Fig. 1: Example trajectories following spinal cord injury.
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a an uncomplicated trajectory compared to (b) a complicated trajectory. *AD complications; **Infected wound. AD Autonomic Dysreflexia, ED Emergency Department, ICU Intensive Care Unit, Rehab Rehabilitation, SICU Surgical Intensive Care Unit, SNF Skilled Nursing Facility. Blue shading denotes hospital system where study was conducted.

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Transitions from acute inpatient rehabilitation

Participants and their support persons reported challenges navigating sufficient rehabilitation. The average inpatient rehabilitation length of stay (LOS) for this cohort was 46 days (range 21–93). Themes that emerged from early interviews included discharge readiness, LOS uncertainty, and insurance impacts (Table 2). Eighteen of 20 participants reported not being ready for discharge and expressed a need for additional therapy. All participants in this study experienced pressure from their insurance institution to reduce inpatient days, resulting in a peer-to-peer appeal conducted on their behalf by a physician or other rehabilitation team member to negotiate additional coverage. Some of the more severely injured participants had more than one round of negotiations for longer LOS conducted on their behalf. As shown in Table 2, participants questioned the process and accuracy around identifying a discharge date, and expressed concern about maximizing their access to rehabilitation in an environment where revenue generation plays a role and insurers challenge providers’ recommendations.

Table 2 Acute Inpatient Rehabilitation Experiences.
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Transitions to and from skilled nursing facilities

Ten of the 20 participants were discharged to a skilled nursing facility (SNF) after AIPR (Table 1). Each participant was discharged to a different SNF. All but one participant had a cervical level injury. All ten participants reported discharge to a SNF to allow more time to coordinate services for independent living, such as personal care assistance and home accessibility modifications. A close secondary factor reported was the desire for additional therapy that could be accessed at the SNF. At the time of study completion, eight participants were discharged from the SNF to a private residence, one was still in residence at a SNF, and one was deceased. Participants reported challenges during their transitions to and from SNFs. Emergent sub-themes included finding and choosing a facility, timelines associated with decision-making, and perceived premature cessation of therapy in the SNF (Table 3).

Table 3 Transitions to and from Skilled Nursing Facilities.
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Choosing a SNF was a significant challenge for many participants. Commonly, participants would ask the interviewer, “What is the best SNF for spinal cord injury care?” Participants expressed a desire for quality, SCI-specific therapy in the skilled facilities as a “step-down” from AIPR. They desired guidance about appropriate facilities, and expected that health professionals in AIPR would guide them to the next level of care by providing clearly defined options for them to consider. While participants were provided with a list of facilities and star rating system from Medicare Nursing Home Compare, information about SCI-specific expertise at the facilities was not available. As a result, they or their family members needed to spend additional time researching appropriate facilities. Additionally, participants reported pressure to make rapid choices, often followed by fast transitions, with transfers to a new facility occurring within hours of the decision being made. Paradoxically, participants who sought SNF care for extended rehabilitation and therapy reported insurance coverage negotiations that mirrored their experiences in AIPR. Participants faced discharge within weeks of admission, due to insurance cessation of coverage resulting from reported lack of progress in therapy.

Transition to outpatient services in the community

The most commonly reported experiences in the community were related to transitions to outpatient therapy services. Out of ten participants who were discharged directly home from AIPR, seven accessed outpatient therapy at the SCI rehabilitation center where they completed AIPR. Facilitators included personal financial resources to purchase an accessible vehicle (1 participant), accessible transportation services paid for by workers’ compensation (1 participant), functional ability to transfer into conventional vehicle (4 participants), or financial resources to stay in an accessible apartment adjacent to the rehabilitation facility, negating need for transportation (1 participant). Out of the three participants who did not access outpatient therapy at the SCI rehabilitation center, one was restricted by insurance to an outpatient facility at another healthcare institution (and had resources to purchase an accessible vehicle); one lived an hour from the rehabilitation facility, and while able to transfer into a car, opted for a closer therapy location to reduce transportation costs and strain on family; and one had private insurance that did not pay for transportation, lacked access to a modified van, and was unable to be transferred into a car. This individual received occupational and physical therapy services in the home.

As indicated previously, eight of the ten participants who were admitted to a SNF after AIPR ultimately left the facility to live in the community. After discharge from the SNF, these participants sought additional therapy in the community. Seven of these eight individuals eventually accessed outpatient therapy at the SCI rehabilitation facility where they received inpatient rehabilitation, five of whom received home therapy services first, while managing logistics for transportation. One participant received home therapy exclusively due to persistent transportation barriers. Despite having access to wheelchair transportation services through Medicaid’s Home and Community-based Services Waiver Program, he was unable to find a company that would serve his geographic region.

Finally, participants expressed significant resource navigation challenges, including accessing information and managing many concerns at one time highlighting additional work and emotional stress concurrent with efforts to recover (Table 4).

Table 4 Resource navigation challenges.
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Discussion

This study illuminates multifactorial challenges experienced by people with SCI during the first year following injury, from their own perspectives, demonstrating an important application of the transformative paradigm. Medical and physical impacts of SCI are well documented in the literature, but there is little information about navigational experiences or activities undertaken while seeking recovery, including transitions across institutions, the hidden work expended in order to navigate health and social resources [30], and the emotional toll of persistently experienced barriers to societal participation. This study highlights challenges experienced by people with SCI across transitions in care that risk access to sufficient and appropriate care, revealing important imbalances in power between these individuals and institutions involved in their rehabilitation.

Post-injury trajectories and significance of transitions

In many cases, post-injury trajectories were complicated and included numerous transitions in care. Participants with more complex injuries or secondary conditions experienced a greater number of transitions within and across health care systems, risking discontinuity of care [10]. Such transitions can have adverse impacts on safety and wellbeing through increased readmissions, medication mistakes, and greater health care spending [10, 31,32,33]. Studies have shown that individuals with complex conditions and their caregivers often feel unprepared to manage their condition after hospitalization, due to a paucity of information and reduced access to health professionals to direct questions [31]. This is a salient issue for individuals with SCI, who experience barriers accessing knowledgeable practitioners or SCI-specialized care outside of their rehabilitation facility [14].

Importantly, while all participants were recruited from a SCI Model Systems Center for rehabilitation [34], they had different trajectories immediately following the injury. Slightly less than half of the cohort were taken immediately to a level one trauma center that would offer the best level of care for acute SCI. The rest were transported to local community hospitals before accessing a higher level care. Additionally, despite access to SCI-specialized treatment during inpatient rehabilitation, this cohort still experienced barriers to sufficient and appropriate care, causing great concern for individuals with SCI with limited or no access to specialized SCI care within their communities.

Transitions from acute inpatient rehabilitation: who is making decisions about care?

Results for this cohort show slightly longer AIPR lengths of stay (average of three days) compared to typical SCI experiences [29], likely due to the high number of participants with tetraplegia. However, the current trend of decreasing lengths of stay for AIPR was reflected in the experiences of this cohort, including LOS uncertainty, perceived discharge unreadiness, and influence of insurance institutions. The majority of participants expressed a desire for additional rehabilitation, questioning the timing of their discharge as well as how they would receive additional rehabilitation following discharge. Unfortunately, barriers to sufficient and appropriate rehabilitation arise in part from the complex relationship between eligibility requirements for AIPR services, insurance institutions, and the U.S. healthcare system, which is market-based and therefore influenced by political-economic factors [20]. Eligibility for AIPR is contingent upon the need for medical management [35]. When medical management is no longer a necessity, third party payment ceases, regardless of proficiency in skills that promote living independently. This phenomenon significantly influenced lengths of stay and access to rehabilitation, not only in AIPR, but also in SNF settings. Individuals with cervical level injury were most negatively affected, most of whom reported not being ready to leave rehabilitation, or felt their rehabilitation to be incomplete at discharge. The nature of how individuals with SCI qualify for AIPR is at odds with their longer-term needs for rehabilitation once medical and nursing needs have been met. This negates the value of therapy for functional skills development to increase proficiency in mobility, transfers, activities of daily living, and successful community reintegration. Once discharged, many individuals encounter significant barriers to SCI-specialized interventions in their community, losing the opportunity to maximize independence. While most of the participants in this study ultimately gained access to outpatient therapy at the SCI Model center, the larger population of people with SCI do not have access to these centers.

An interesting finding of this study is the high prevalence of peer-to-peer negotiations between the treating physician and a physician representative of the insurance institution who is rarely specialized in SCI, or even Physical Medicine and Rehabilitation [36]. Participants and their care teams lacked control over the rehabilitation timeline, in part, due to institutional practices of non-specialized physicians subverting expert opinions of treating physicians. This reflects a surprisingly unquestioned conflict of interest. Further, such denials of sufficient and appropriate care persist regardless of participants’ adherence to paying health insurance premiums and co-payments for services, raising the question of rights to care. The trend of decreasing lengths of stay over the past 40 years has led to a new generation of medical and allied health providers that have been raised in this constrained model of rehabilitation provision without historical experience of longer lengths of stay. Today, providers estimate discharge dates in part based on their experience regarding what insurers will pay, yet still find themselves advocating for their patients in time-consuming peer to peer meetings with insurance staff.

Transitions to and from skilled nursing facilities

Despite ten participants being discharged after AIPR to ten different SNFs, participants universally reported difficult experiences. Participants and their families undertook high levels of beneficiary work [30], the often invisible and unremunerated effort that is expended to identify resources and navigate institutions in order to identify an appropriate facility. Even with tools such as Medicare Nursing Home Compare [37], participants struggled to identify whether facilities had experience caring for people with SCI. Additionally, the volume of facilities can be overwhelming to investigate, especially when “fast” decisions are needed, placing time constraints on the ability to perform necessary research into various facilities.

In association with reduced lengths of stay in AIPR, participants chose admission to a SNF for increased time to prepare for independent living in the community, and secondarily, to access additional therapy. While the amount of occupational and physical therapy in SNFs is less than what is provided in AIPR, participants anticipated it to be greater than what would be accessed via outpatient therapy. Several participants experienced early discharge, which may be associated with a lack of SCI specialization in SNF staff. Absence of specialized knowledge can manifest in a reduced knowledge about expected functional outcomes, and inadequate goal identification to justify appropriate treatment to insurance institutions. Based on experiences of participants in this cohort, SNFs are largely ill-equipped to provide sufficient or appropriate care for the complex condition of SCI.

Limitations

This study reveals experiences of participants, most of who have cervical SCI, from one regional SCI rehabilitation center in the Midwestern U.S. Data may not reflect experiences in other geographic regions, or of individuals with lower-level SCI.

Conclusion

A paradigmatic change is needed to promote sufficient and appropriate care for people with SCI. Trajectories following injury feature transitions across care systems that can be fraught with stress and risk discontinuity of care. The experiences of this cohort reveal significant challenges attaining sufficient and appropriate rehabilitation. AIPR is a critical aspect of recovery, but does not ensure sufficient intervention for maximization of functional skills and community reintegration. Given that this cohort was recruited from a SCI model system of care, situations for accessing SCI-specialized care are arguably worse for individuals outside of SCI model systems, which make up the majority of individuals living with SCI. There is much work to be done to maximize rehabilitation access by people with SCI. Decision-making about care should be placed in the hands of SCI providers and their patients, challenging conflicts of interest from physician representatives of insurance institutions. Additional research is needed to investigate innovative models of rehabilitation provision to people with SCI to make positive impacts on recovery trajectories and successful transition to independent living in the community.