Barriers and Facilitators in Access to Care Among Adults With Traumatic Spinal Cord Injuries: A Qualitative Study Comparing VA and Commercial Insurance

Abstract

Background

Individuals with traumatic spinal cord injuries (TSCI) can encounter different experiences when accessing care, especially between individuals receiving care from the Veterans Affair (VA) health care insurance and commercial insurance.

Objectives

The purpose of this study was to explore the barriers and facilitators in access to care among individuals with TSCI receiving care from the VA and commercial insurance.

Design

We used a qualitative descriptive study and interviewed 31 participants (n = 13, receiving care through the VA; n = 18, commercially insured).

Methods

Participants and their caregivers participated in a semi-structured interview. To analyze the data, we used thematic text analysis to identify overarching themes.

Results

We identified four themes: (a) challenges identifying appropriate and adequate specialized care, (b) financial assistance is limited when accessing care, (c) lack of proximity to care leads to social and contextual barriers, and (d) enhancing care through close social support systems. The first three themes were barriers to care while the latter theme was identified as a facilitator. Most participants from the VA noted challenges finding an adequate formal caregiver, whereas individuals receiving care from commercial insurance reported primarily receiving help from informal caregivers. Financial impediments were discussed between both groups, but those receiving care through commercial insurance noted the most challenges. Finally, individuals receiving care from the VA had support from the VA regarding adaptations to their home environment, whereas civilians often asked informal caregivers (e.g., family, friends, community) for help.

Conclusions

The findings from this study illuminate the need for specialized care centers, caregivers, and additional supports for individuals with TSCI.

Introduction

Traumatic spinal cord injury (TSCI) causes lifelong physical disability and is associated with a higher prevalence of secondary chronic conditions such as cardiometabolic and psychological illnesses compared to persons without a disability.^1,2 People with TSCI have a more sedentary lifestyle and lower levels of physical and social activities in comparison to adults without a disability.^3,4 Evidence suggests that TSCI also elevates the risk for Alzheimer’s disease and related dementias (ADRD).^5-7 Individuals with TSCI are at a greater risk of chronic comorbidities and cognitive decline.^6,8

Clinical care for patients with TSCI is primarily confined to issues that arise as a direct result of the impairment, such as sensorimotor deficit,^9,10 neuropathic pain,^11,12 bladder/bowel dysfunction,^13,14 and emotional distress.^15,16 While acknowledging the importance of these debilitating medical issues, particularly in an immediate aftermath of TSCI, less attention has been given to long-term risk of secondary comorbid conditions and cognitive decline that TSCI might have triggered.^17-19 Research shows that people with TSCI are at higher risk of ADRD as well as cardiometabolic, musculoskeletal, and psychological conditions.^2,6,7 Moreover, due to large variations among commercial insurance in their out-of-pocket costs and coverage of certain services, experiences of commercially-insured people with TSCI in receiving the needed care might substantially vary.

In the U.S., approximately 9.6% of individuals with TSCI are veterans. ²⁰ Majority of veterans use Veterans Affairs (VA) benefits, including the Veterans Health Administration. ²¹ The VA system is nationally recognized and uses a centralized, coordinated approach to provide lifelong and comprehensive care to veterans with TSCI. The VA has 25 Spinal Cord Injuries and Disorders (SCI/D) centers providing specialized care for veterans with TSCI.^22,23 Additionally, there are also more than 100 designated teams, specialized on TSCI at many VA medical centers across the country that work in collaboration with SCI/D 25 centers to deliver primary and specialty care. ²⁴ These centers focus on preventive and whole health by providing comprehensive annual TSCI evaluation and provide the eligible personnel with adaptive equipment needs. ²⁵ While the VA healthcare system is recognized for providing affordable, equitable, and high-quality care, ²⁶ the impact of the chronic provider shortages in the VA health system and additional challenges faced by individuals with TSCI remain unknown.

About 50% of adults with TSCI who are not part of the VA system are covered by private insurance, either employer-sponsored or individually purchased. This insurance often has gaps or limited coverage for long-term rehab, home modifications, and durable medical equipment. ²⁷ Medicaid covers about 28% of TSCI patients, typically those who are financially disadvantaged. It is the only national program that pays for the full range of services enabling TSCI patients to live in their own homes and communities, including long-term care through skilled nursing facilities or home care. However, Medicaid resources are limited, and because it is state-run, eligibility depends on state-specific income and asset limits. When an individual loses employer-sponsored insurance, Medicare often becomes the primary payer; about 40% of people with TSCI are covered by Medicare. Medicare does not cover long-term care but pays roughly 80% of the approved amount for covered medical services and equipment. ²⁸ A smaller portion of TSCI patients are covered by Auto No-Fault insurance and Workers’ Compensation. Research shows that those covered by these catastrophic payors often receive the best care compared with all other insurance types. ²⁹

Insurance type is also associated with different health outcomes. One large study comparing privately insured vs. Medicare-covered adults with TSCI found that Medicare beneficiaries had a higher prevalence of psychological (54.7% vs. 35.4%), cardiometabolic (74.7% vs. 70.1%), and musculoskeletal (72.8% vs. 66.3%) morbidity than privately insured adults with TSCI. This disparity is partly to differences in health insurance access and supplementary needs not covered by the primary payor. ³⁰ Understanding the potential similarities and differences between the VA and commercial insurance systems regarding barriers and facilitators to care, from the perspectives of people with TSCI, remains less explored. ³¹

This qualitative study was informed by prior quantitative research, which examined the higher risk of comorbidity and adverse health events among adults with TSCI. Researchers found that adults with TSCI were more susceptible to potentially preventable hospitalizations such as urinary tract infections, pneumonia, and heart failure. In this qualitative study, we aimed to explore and understand the similarities and differences in care between individuals receiving care from the VA and commercial insurance. The purpose of this study was to explore the barriers and facilitators to accessing care in the community among veterans and civilians with TSCI.

Method

We used a descriptive qualitative design to explore the experiences of veterans and civilians with TSCI access to care. The descriptive qualitative design helps to obtain a deeper understanding of patients’ experiences with an illness and their perceptions towards a phenomenon intervention.^32-34 This design aligns with our research aims of gaining a deeper understanding of the experiences, challenges, and facilitators of veterans and civilians with TSCI regarding their access to care. This study received Institutional Review Board (IRB) approval from the University of Michigan (HUM00213573). For ease, we asked participants to provide verbal consent and recorded this via Zoom prior to the interview, which was approved by the IRB in March 2022.

Participant Recruitment and Pre-Screening

A total of 31 participants agreed to participate in the study (n=13, receiving care through the VA; n=18, commercially insured civilians). Table 1 presents the eligibility criteria for participants.

Table 1.

Participant Eligibility Criteria

Inclusion criteria	Exclusion criteria
• 45 years or older • Living in the United States • Screened for TSCI and type through survey • Could also include individuals with a co-occurring diagnosis of acute paraplegia, quadriplegia, or tetraplegia	• Individuals < 45 years of age • Individuals living outside the United States • Had TSCI more than 15 years ago • Did not screen for TSCI through survey

Participants were recruited through existing spinal cord injury registries at our institution. Emails were also sent to members of Paralyzed Veterans of America. Since the Paralyzed Veterans of America registry includes individuals with a TSCI diagnosis receiving care from the VA and outside the VA, participants from either group may have been recruited through this organization. In addition, we disseminated information about the study through the Paralyzed Veterans of America Michigan chapter. To ensure representativeness of individuals with TSCI receiving care from the VA, we also contacted Black veteran organizations or affinity groups not TSCI specific.

We used maximum variation sampling to obtain diverse perspectives between veterans and civilians with TSCI. We recruited participants based on five characteristics: Neuro-Quality of Life Cognitive Functioning score (low, average, and high), race (white or non-white), gender (male or female), the average years of onset (less than five years and not greater than 15 years), and average age of the sample. We recruited individuals over the age of 45 years of onset because this aligned with the quantitative study we conducted, which found that as individuals with TSCI age, their risk for dementia and Alzheimer’s, specifically, tends to increase, requiring more specialized care.^6,35 Moreover, we used the Neuro-Quality of Life Cognitive Functioning score to operationalize cognitive functioning based on the quantitative study^6,35 and because perceptions of care tend to change if cognitive functioning is impacted/decreased. ³⁶ Interested participants in the study contacted the study team via phone or email and took a web-based pre-screening questionnaire. This questionnaire included general questions (e.g., age, gender), health information (e.g., psychological conditions, cardiometabolic conditions, respiratory or pulmonary conditions), spinal cord injury information (e.g., location on body where spinal cord injury occurred, etiology), and cognitive functioning (e.g., difficulty reading, concentrating, following instructions). These questions, in addition to the Neuro-QoL™,^37,38 were used to ensure participants met eligibility and selection for interviews. To determine TSCI diagnosis, participants self-reported whether they had TSCI.

Data Collection

We conducted semi-structured interviews with participants and their caregivers (when permitted by the participant) via Zoom between October 2022 and September 2023. Interviews lasted 45 to 60 minutes and were video and audio-recorded. Interviewers had a range of experiences and expertise in the health sciences including topics such as TSCI, disabilities, medical health policy, public health, and social work. We first started the interview asking participants questions from the Craig Handicap Assessment and Reporting Technique (CHART) short form ³⁹ to build rapport and have a better understanding of participants’ lifestyle before beginning the interview protocol questions. The CHART included questions on participants’ needs for assistance and supervision, typical activities they engage in, and demographic information. This also encouraged participants to recall their experiences with TSCI and accessing care. These concepts were expanded during the interview. We used a semi-structured interview protocol with probing questions, allowing interviewers to slightly deviate from the script as needed but ensuring questions were relevant to the interview protocol. The interview questions asked participants about their TSCI, healthcare services used, and lifestyle changes after their TSCI (see Supplementary Material 1 for the interview protocol). To identify an appropriate sample size, we conducted interviews until we met saturation, which is the point at which collecting more data from participants would not result in new information. ⁴⁰

Data Analysis

All interviews were reviewed for accuracy and imported into MAXQDA ⁴¹ for analysis. Prior to analysis, we conducted team meetings to review the interview guide and ensure all members of the research team understood the qualitative research questions. To generate a codebook, six members on the research team independently coded the same two transcripts and then came together to discuss the codes through team discussions. We used an inductive approach grounded in the data and a deductive approach guided by the Anderson health behavioral model. This model served as a theoretical framework to further inform our codebook across three key factors related to access to care: predisposing characteristics such as demographic variables, enabling resources including insurance, and perceived need for care. ⁴² Once the codebook was developed, the total number of participant transcripts were divided among the research team, and each transcript was coded by two members for verification purposes. Team members were also encouraged to memo. ⁴³ This allowed the paired coders to meet and discuss their codes and mitigate coder drift. The research team coded veteran and civilian transcripts at the same time, with the group assignment blinded to the researchers.

Data were analyzed using thematic text analysis. ⁴⁴ We used the process of combining similar codes into categories, and grouped similar categories into themes to identify overarching themes across groups. We analyzed veteran and civilian data using features in MAXQDA such as compare cases and groups and the interactive code matrix browser ⁴⁵ to explore distinct similarities and differences across groups related to access to care. Specifically, when comparing the two groups, we activated codes and their respective categories and compared the differences between groups based on the number of coded segments. For example, for the code ‘payer policy impacting services,’ we noticed this code was applied a total of 29 times across the transcripts for the civilian group and 20 for the veteran group. Upon closer examination, this code was applied across 18 distinct transcripts for the civilian group and 14 distinct transcripts for the veteran group. We aimed to further explore the similarities and differences in code intensity across civilian and veteran groups. Figure 1 displays how this was presented in MAXQDA using the Segment Matrix function and displays the different codes that informed the financial impediments category. We also held several team meetings to discuss theme development and overarching themes.

Figure 1.

Display of sample segment matrix in MAXQDA to compare codes across civilians and veterans

Results

Table 2 presents the sample demographics. Thirty-one participants engaged in a semi-structured interview. Eleven participants identified as female (36.7%) and 20 as male (64.5%). The average age of the participants was 58 years. Majority of participants were between the ages of 50-59 (n= 16, 51.6%). Twenty-three participants (76.7%) identified as White, four (13.3%) as Black, one as Asian (3.3%), two as Native American or Alaska Native (6.5%), and one as biracial (3.3%).

Table 2.

Sample Demographics

Characteristics	N (%)
Insurance
Receiving care through VA	12 (38.7%)
Receiving care through commercial insurance	19 (61.3%)
Gender
Female	11 (36.7%)
Male	20 (64.5%)
Age
40-49 years	6 (19.3%)
50-59 years	14 (45.2%)
60-69 years	6 (19.3%)
70-79 years	3 (9.7%)
80-89 years	2 (6.5%)
Race
White	23 (76.7%)
Black or African American	4 (13.3%)
Asian	1 (3.3%)
Native American	2 (6.5%)
Biracial or multiracial	1 (3.3%)
Geographic Location
Metropolitan	27 (87.1%)
Non-Metropolitan	4 (13.3%)
State Demographics
Midwest	15 (48.4%)
West	7 (22.6%)
South	7 (22.6%)
Northeast	2 (6.5%)
Cognitive Function a
T-score mean (min, max)	M = 47.2 (29.8, 64.2)
Mild impairment	5 (16.1%)
Moderate impairment	7 (22.6%)
Severe impairment	2 (6.5%)
Normal cognitive function	11 (35.5%)
High cognitive function	6 (19.4%)
Years Onset since TSCI
Mean (min, max)	7.10 (0, 36)
0-3 years	10 (32.3%)
4-8 years	10 (32.3%)
9+ years	11 (35.5%)

^aCognitive function was measured through Neuro-QOL. Neuro-QOL T-scores have a possible range of 17.3 to 64.2. Neuro-QOL interpretation of “Mild,” “Moderate,” and “Severe” impairment are benchmarked from the Neuro-QOL scoring guidelines as below 0.5-1.0 SD, 1.0-2.0 SD, and over 2.0 SD, respectively, from the mean T-score (i.e., 50) (Score Cut Points, n.d.). Although scoring guidelines consider anything above the mean “Within normal limits,” we interpreted anything over 0.9 SD from the mean as “High cognitive function.”

We identified four overarching themes from both groups related to the perceived barriers and facilitators of access to care in the community among TSCI patients. These themes were shared by participants receiving care from the VA and those receiving care from commercial insurance, however, specific nuances were identified across themes. Three themes were identified under barriers: Identifying appropriate and adequate specialized care and medical supports is a challenge; financial assistance is limited when accessing care; and lack of proximity to care leads social and contextual barriers. One theme was identified as a facilitator of access to care: enhancing care through close social support systems. Table 3 demonstrates how themes were identified based on categories informed by multiple codes and a summary of concordant and discordant findings across civilians and patients receiving care form the VA. Descriptions and illustrative quotes are presented in the following section.

Table 3.

Coding Process to Demonstrate Identification of Themes and Corresponding Summary of Convergences and Divergences Between Civilians and Veterans

Codes	Convergences	Divergences	Categories	Themes
Structure of care, staff shortages, coordination of care, lack of specialized facilities, experiences with caregivers, informal caregivers	There are not enough doctors, and a shortage of nurses affects quality of care (e.g., long wait times in the ER, delayed care in hospital). Most encountered challenges identifying specialized care.	Patients receiving care from the VA noted having a difficult time finding formal caregivers to support their needs, whereas patients receiving care through commercial insurance mostly discussed the role of informal caregivers (e.g., spouse, children).	Lack of structural care	Identifying Appropriate and Adequate Specialized Care is a Challenge
Knowledge of TSCI, care team’s knowledge of TSCI, knowledge, training, perceived negative experiences	Patients from both groups expressed challenges in seeking specialized care. Specifically, participants faced obstacles finding specialized doctors who helped them uncover the root cause for their symptoms. Often, providers found it difficult to understand the complexity of patients’ needs and diagnoses. Moreover, even when visiting a specialized care facility, patients often found their needs were not met or the center was not specialized for their needs (i.e., spinal cord injuries). One of the most prevalent factors contributing to this was a lack of trained staff on spinal cord injuries.	--	Challenges Identifying Specialized Care; Quality of Care
Cost as a barrier, payer policy impacting services, income/finances	Civilians and patients receiving care through the VA both expressed limits from their payer policy that impacted the services they received including medical equipment such as a wheelchair, physical/occupational therapy services, reduced caregiver support, and psychological services.	Patients receiving care from the VA expressed limits with coverage such as not paying their informal caregiver (i.e., wife). Patients receiving care from commercial insurance noted limited insurance coverage affecting their ability to more specific yet still important needs such as a gym membership or abstaining from upgrading their car to fit their needs because their money needed to be allocated to other health priorities such as co-payments. Although financial obstacles were expressed by both groups, patients receiving care through commercial insurance spoke at length about these challenges in comparison to patients receiving care from the VA. Patients receiving care through commercial insurance had a more challenging time learning about what would be approved through their insurance and what they would be eligible to apply for (e.g., disability, different types of insurances).	Financial Impediments	Financial Assistance is Limited When Accessing Care
Distance to care, transportation, accessible housing, built environment, public accommodations/the environment	Patients from both groups faced challenges related to the distance they needed to travel to access care. They also noted the importance of planning ahead and exploring whether the locations such as restaurants, hotels, music venues, gym are wheelchair-accessible, often noting that they were not.	Patients receiving care through commercial insurance spoke at length about having a support system, typically friends, who helped them re-do areas of their home to accommodate their needs, whereas those receiving care through the VA mentioned having help from the VA to make their space accessible.	Social and Contextual Needs	Lack of Proximity to Care Leads to Social and Contextual Barriers
Family help/paternalism, social support, household arrangement, community support; Informal caregiver(s), experiences with caregiver(s), paid by insurance, paid by oneself	The role of familial support was prevalent between both groups of participants.	Although both groups of participants noted the importance of family and friends, some participants in the group receiving care from commercial insurance noted that their social life, particularly, their friendships, had ended after their injury, with many friends failing to understand the changes that took place after their injury. There was significant variability between both groups of participants on whether their insurance paid for their caregiver or whether they paid for it out-of-pocket. Insurances such as Medicaid Advantage, the VA, worker’s compensation, or Michigan No Fault (however this is no longer available) paid for caregiver services.	Social Environment; Caregiver Support	Enhancing Care Through Close Social Support Systems

Barriers to Accessing Care

Identifying Appropriate and Adequate Specialized Care and Medical Supports Is a Challenge

Participants in both groups discussed the challenges associated with the lack of specialized care facilities for patients with TSCI and its impact on their care team’s knowledge and training. Participants explained that when visiting care facilities such as rehabilitation centers, the care staff did not appear knowledgeable on TSCI or ways to treat their injuries. Specifically, comorbid medical conditions were less understood in persons with TSCI. One participant receiving care from the VA (P18_VA) explained that often, individuals with TSCI present symptoms different than the general population, which can result in a misdiagnosis or a delay in care. He described visiting the emergency room for chest pains years after his TSCI and since he did not present typical symptoms of a heart attack, he was almost dismissed until he convinced the medical personnel to insert a catheter. Upon this procedure, it was found that 80% of his arteries were clogged. The lack of specialized care and knowledgeable care team was prevalent among both groups and often attributed to the lack of trained staff on spinal cord injuries. One participant stated, “They [staff] didn’t seem to be too knowledgeable about spinal cord, and I got the sense that they were definitely trying to treat my injury the same as somebody with a stroke or something” (P3_Non-VA). P30_VA also shared his experiences visiting a rehab center and realizing the lack of services available to patients with spinal cord injuries. He shared:

[The rehab facility] didn’t cater to spinal cord. Although they said they did. They put it in their advertisement, but once you signed up and you go there a few times, you start to realize they’re not equipped for what I really needed…

Given the lack of specialized care across both groups, some participants traveled great distances for rehabilitative care, sometimes to another State. Lack of knowledge about TSCI among the care team also influenced the type of treatment participants received and the timing of their treatment. Often, the care team doctors were simultaneously caring and learning about the progression of patients with TSCI and recommended that the participant continue doing everything they were usually doing without considering the ramifications or limitations. P18_VA shared, “And I found that when it came to specialized care, they really were in over their head, and they didn’t understand the issues associated with spinal cord injury with the bowel, bladder, with autonomic hyper-dysreflexia.” Participants who received care from well-known rehabilitation hospitals often noted that even though the facility was well-regarded, they had limited medical professionals with experience in TSCI. In one case, P21_VA was seen by a nurse practitioner at their primary care provider’s office, who had more experience with TSCI. However, because seeing that person required physician approval, it delayed their receipt of care.

There were some differences between patients receiving care through the VA and through commercial insurance pertaining to medical support. Specifically, patients receiving care from the VA described having a difficult time finding an adequate formal caregiver to help them, whereas most patients receiving care through commercial insurance discussed the role of informal caregivers, often a spouse or children, who cared for them daily. Challenges were noted across both groups of patients ranging from specialized care to finding adequate formal caregiver support.

Financial Assistance Is Limited when Accessing Care

Participants in both groups discussed at varying lengths the financial barriers as a patient with TSCI though this was most apparent among the participants receiving care through commercial insurance. Participants discussed out-of-pocket healthcare expenses, such as purchasing a manual or power wheelchair and/or features like a seat cushion, as well as limited rehabilitation services, like physical therapy/occupational therapy, as well as psychological services, and reduced caregiver support. P7_Non-VA when discussing formal caregiver support stated, “I would have to pay for more hours. And right now, I really can’t afford that.” Participants in both groups discussed the need to pay out-of-pocket to receive more specialized physical therapy specific to spinal cord injuries. P16_Non-VA vividly recalled purchasing a wheelchair out-of-pocket and resorting to Amazon. She stated:

[I got the wheelchair from] Amazon. And I didn’t know what I needed. I’ve never been in a wheelchair before. We just bought what we could afford. Wheelchairs start around $150 and then they go up to about $800. And then they jump up to $3,000 to $5,000. So, we got the $150 model not having any idea what I needed. And oh, boy, am I destroying it.

Participants from both groups discussed the financial impact of needing an accessible vehicle after the accident. Some participants attempted to travel without an accessible vehicle due to the cost, mostly those receiving care through commercial insurance. In contrast, others mentioned they had no choice but to buy a vehicle immediately, leaving little money for living expenses. P29_VA stated:

That [vehicle purchase] is instantly a big chunk of your money gone. And then everything it took to live and raise three kids on no income for six months, and then the little bit that Social Security provided was all we had…We went through every bit of our savings within the first couple of years…And then we lived paycheck-to-paycheck and have continued to do so until this point.

Some expressed the need to apply for low-income health insurance programs designed for individuals who do not qualify for state or federal healthcare programs including Social Security Disability to offset the financial barriers. Participants with commercial insurance faced difficulties paying their deductibles and co-payments for medical care or prescriptions, paying for rehab services out-of-pocket, and having to choose which care they received or how often they visited their doctors. P11_Non-VA stated, “I didn’t have enough money for those deductibles…I had to really limit my ability to go to physical therapy and how many times I could see the psychiatrist.” Moreover, participants discussed the challenges with their insurance “running out pretty quickly” and how having a job would cause them to lose their benefits because they received Medicaid insurance. Another major difference between these groups was that patients receiving care through commercial insurance found it challenging to access information about the types of services offered through their insurance and identifying what they could be eligible for to offset medical costs (e.g., disability and exploring other insurance options). For example, P11_Non-VA shared that when she was unemployed, she felt lost in the system stating, “I had no money and I didn’t understand about social services.”

Lack of Proximity to Care Leads to Social and Contextual Barriers

Participants in both groups discussed the obstacles to seeking care as it pertains to social and contextual factors, including traveling long distances and a lack of transportation, and variable support from friends and family. Many traveled between 45 minutes to three hours to access physical therapy. Participants typically relied on family members, friends, and formal/paid caregivers to take them to their appointments. Participants described the importance of planning their travels with sufficient time and ensuring these locations, including doctors’ offices and hotels, were accessible. For example, P30_VA shared that most of their doctors are about an hour away, often requiring to stay at a hotel. He and his caregiver often found it necessary to review hotel websites and make phone calls to ensure hotel accessibility (e.g., wide doors and ramps). Despite these efforts, he often encountered situations where the rooms were not accessible as described online or over the phone. He stated:

It’s a process because if we have to get a motel room, now we have to call the motel, ask them do they have handicapped rooms, ask them what kind of bed they have cause my patient lift has to go under the bed…get online, try to look at pictures, or if we’re already out there in that area and we have to stay, we have to go inside. My wife [caregiver] goes inside to check the room to make sure there’s enough room for me to get in… (P30_VA)

Many participants and caregivers found themselves needing to plan with sufficient time in advance for medical appointments or vacation. P29_VA, caregiver stated, “We can’t be willy nilly with…we have to really plan out…we’re going to have to plan out either somebody with us to help with the wheelchair. So we do some research in places we go.”

One participant with commercial insurance also expressed needing to travel to four different states to receive physical therapy and stated:

… Every time I went out of state, I had to pay all that out of pocket…One was $30,000 for three months, $150 an hour, and I was going for four hours a day. (P6_Non-VA)

Access to care due to transportation challenges, either driving too far of a distance or having a willing caregiver who would visit them in their home, were particularly salient for participants living in rural areas. Others noted that the frequency in receiving physical therapy was significantly reduced due to distance to care, stating, “I’ve had to modify my access because I can’t afford the gas sometimes” (P11_Non-VA).

Participants from both groups noted that after their injury, their environments such as their homes, required modifications to ensure it was accessible. As such, one difference between these groups regarding their built environment was that patients receiving care through commercial insurance expressed having a support system, typically friends, who helped them build and construct areas of their home that would be more accessible to them after their injury. On the other hand, some patients receiving care from the VA expressed receiving support from their family, but primarily through the VA. One participant mentioned that the VA helped them to modify their home by installing bars in the bathroom and a ramp.

Facilitator to Accessing Care

Enhancing Care Through Close Social Support Systems

Participants in both groups noted the importance of familial support when navigating the obstacles of living with TSCI and accessing care. Since most participants from both groups reported the need to pay caregivers out-of-pocket, they typically relied on informal caregivers, such as their spouse and children, to help them navigate life with TSCI. This network of informal caregivers assisted them with tasks such as transportation to doctor appointments, house chores, and helping with daily living activities. Several participants mentioned that family caregivers stepped in when agency support was unavailable or cancelled. Some participants also expressed their mistrust and negative experiences with formal caregivers through insurance and had a family member take on the role of caregiver instead. P30_VA stated:

…We contacted the VA, and they set up a program for my wife, so she takes care of everything, wound care, dressing, bathing, showering, everything… She makes sure it’s done right and to the level it should be done. Some of the other providers will just come in and do whatever the bare minimum was, turn around, and walk out. And it wasn’t enough care involved with home care.

Similarly, P27_VA stated:

If my wife wasn’t trained and knew how to do this or if I didn’t have a wife…when that company calls and says there’s no one coming today…I’m just out in the cold… That’s an overall sense the caregiver system is broken…It needs help.

Importantly, there was increased variability between both groups regarding payment of caregiver, with some participants stating that their insurance (e.g., Medicaid Advantage, the VA, worker’s compensation, or Michigan’s No Fault) paid for this service, while others noted slim to no support from their insurance regarding caregiver support, even though this support was foundational to the care patients with TSCI received.

While most participants discussed the role of family members in helping them navigate appropriate care, patients particularly receiving care through commercial insurance noted their relationships, particularly with friends, was negatively affected after their injury. Many friends distanced themselves. P14_Non-VA explained, “All my friends just disappeared. You have a work family and then you don’t.” Similarly, another participant caregiver shared, “he [participant] doesn’t have the pool of friends and associates that he had before. Especially with having to leave his job. When you stop working, it definitely thins out the pool of friends…it definitely takes that toll on him and I, both” (P15_Non-VA, caregiver). Participants who lost relationships with family and friends after the TSCI often felt alone in their journeys with little to no social support.

Discussion

This study aimed to explore the barriers and facilitators in access to care among individuals with TSCI, comparing those receiving care from the VA and commercial insurance in the community. Although VA beneficiaries had easier access to durable medical equipment needed for daily living, individuals from both groups expressed major barriers to accessing specialized care. Beatty and colleagues ⁴⁶ surveyed individuals with TSCI and found that 57% require specialized assistance. Due to a lack of specialized care facilities, participants often felt that their care teams lacked sufficient knowledge on how to treat individuals with TSCI. A recent scoping review found medical staff and personnel caring for patients with TSCI encountered significant challenges in lack of knowledge, skills, and workforce. Lack of TSCI training and its complications led to premature discharge, worsening of patient symptoms, readmission, and sometimes death. ⁴⁷ Moreover, due to the lack of specialized care facilities, many participants, regardless of whether they received care from the VA or through commercial insurance, needed to travel long distances to receive appropriate and specialized care.

For people with any disability, informal caregivers’ support in activities of daily living and accessing care is crucial. ⁴⁸ In this study, participants from both groups reported the critical role of caregivers. Most participants who received care through commercial insurance discussed their experience with informal caregivers, whereas individuals who received care through the VA discussed their experience with both, informal and formal caregivers. Participants receiving care through their commercial insurance reported paying caregivers, regardless of whether they were formal or informal, more often than those receiving care from the VA. In the U.S., insurance (VA or commercial) typically does not cover informal caregiving support. For many caregivers, they find themselves quitting their jobs to provide care for their loved ones, pushing many caregivers to unemployment, poverty, and lack of reliable health insurance. ⁴⁹ Support for informal caregiving is a salient national health policy topic that extends beyond adults with TSCI. ⁵⁰ Since 2024, traditional Medicare has started to cover informal caregiving on a limited financial basis. ⁵¹ The future evaluation of this policy may shed light on its impact on caregivers’ quality of life and patients’ access to care and associated costs. Overall, the barriers and facilitators discussed by participants in this study were often shared by both groups.

Some of the most prominent differences we found between both groups of participants centered around financial obstacles. Between the two groups, participants receiving care from commercial insurance more strongly reported significant financial hurdles when seeking treatment. Indeed, individuals with TSCI require specific equipment, such as a wheelchair or car, to accommodate their needs, which is not usually covered under all insurance plans. Richards and colleagues ⁵² noted that about 58-80% of individuals with TSCI require a wheelchair after their injury. The selection of a wheelchair is a critical factor that can either help or hinder daily life activities if not appropriately tailored. These financial barriers can also hinder an individual’s progress, as insurance often limits the number of physical therapy sessions they can receive.

The lack of proximity to care was another obstacle that all participants discussed. Compared to rural areas, participants who lived in metropolitan areas found it similarly challenging to access care within a reasonable distance. Acknowledging the shortage of medical resources with expertise in TSCI and the existing transportation challenges faced by people with TSCI, the innovative use of telehealth for physical therapy or access to a specialist may provide some relief. Research indicates positive outcomes associated with increased access to preventive and therapeutic services through telehealth.^53-55

Limitations

Several limitations should be noted. First, we invited participants and their caregivers to participate in the study. This was chosen to enhance the quality of the interview dialogue and provide participants with TSCI a sense of support. Although we also probed caregiver perspectives, it would have been helpful to incorporate additional probes into the interview protocol to further enhance our understanding of the caregiver role among patients with TSCI. In addition, it is possible that participants and caregivers were less candid due to the presence of the other; therefore, future studies may want to consider individual interviews with participants and caregivers and dyadic interviews. It would have also been helpful to collect caregiver demographics to better understand their levels of support with patients. Second, although we used a stratified maximum variation sample for recruitment, future studies may consider additional stratification variables or strategies to increase variation. Nonetheless, one of the strengths of this study is that participants were recruited across 16 different states in the U.S. As such, these findings could be transferable to various regions of the U.S.

Recommendations for Improving Access to Care Among Patients With TSCI

The VA system is known to provide veteran-centric care that addresses the unique needs of patients. There are several resources and programs that are offered to patients through the VA system such as research, training, and development of projects that aim to improve the quality of care within the VA system. ⁵⁶ There are currently 25 spinal cord injuries and disorders (SCI/D) systems of care within the VA ²³ . Nonetheless, the findings from our study demonstrated that participants receiving care from the VA shared similar barriers to participants receiving care through commercial insurance, particularly regarding limited access to specialized care for patients with TSCI. Therefore, we encourage discussions on ways to develop or improve specialized care units or centers that can be accessed by patients receiving care from the VA or through commercial insurance. These specialized care units would allow for patients to receive appropriate and efficient care specific to their needs as a patient with a TSCI.

Given the critical role of informal caregivers for patients with TSCI, we also encourage discussions on ways insurances could thoughtfully identify and develop support to informal caregivers when caring for a family member with TSCI such as financial compensation or education on caring for someone with TSCI. Often, informal caregivers find themselves sacrificing individual needs (e.g., jobs, physical, mental, and social well-being) to fully support their family member with TSCI. ⁴⁷ Yet, patients with TSCI feel most comfortable with familial informal caregivers as they are most attentive to their medical needs and accommodations. We hope that these findings spark discussions that can help inform policy and further improve access to care among adults with TSCI.

Contributions to Qualitative Health Research Methodology

From a methodological standpoint, this study presents an innovative approach to analyzing group comparisons in qualitative research using a qualitative data analysis software (QDAS). Although there is research documenting the different possibilities for analyzing qualitative data to make comparisons within and across groups in the health sciences, many examples are derived from mixed methods research studies. In fact, there are less studies that take a qualitatively-driven approach to explore group comparisons. ⁵⁷ Some researchers have advocated for a more structured approach when analyzing similarities and differences between groups in qualitative research. ⁵⁸

To analyze the semi-structured interview data between groups, we used a structured approach that examined the intensity (i.e., frequency) of each code across the civilian and veteran groups. When differences arose on the applications of a code (e.g., 4 or more coded segments) between civilians and VAs, we aimed to further explore whether these differences were nuances between groups or whether participants were sharing similar experiences, yet the saliency of the code differed between groups. By first identifying and comparing the intensity of each code across the two groups, we were able to robustly determine the similarities and differences in access to care between civilians and veterans. To further enhance the trustworthiness of the findings, we used the steps for qualitative group comparisons developed by Lindsay. ⁵⁷ Specifically, we recruited participants from the same underlying populations, collected the same data for both groups, developed a process for analyzing the data where all team members coded civilian and veteran transcripts simultaneously but were blinded to the group, used intensity coding and QDAS to analyze the data, and reported the overarching themes based on unifying similarities while also noting unique and nuanced participant experiences across both groups.

The process of analyzing and making group comparisons was facilitated by QDAS. This study offers researchers initial steps for conducting group comparisons in qualitative research using MAXQDA. We outline how we used functions in MAXQDA such as the comparing cases and groups, the interactive code matrix, and the Segment Matrix. ⁴⁵ These functions allowed us to identify the frequency of codes across groups and displayed each coded segment side-by-side in one window. This helped us to determine whether differences in codes across groups were related to nuanced differences, or whether they were more salient within one particular group. We encourage researchers interested in conducting qualitative group comparisons to explore the best methods for facilitating the data analytic and comparison process. Methods for conducting qualitative group comparisons may include using sticky notes with distinct colors across groups, Excel sheets using a similar color-coding process to distinguish similarities and differences between groups, or different QDAS and its functionalities that would facilitate group analysis including the use of visual displays.

Conclusion

These findings shed light on the barriers and facilitators in accessing care among patients with TSCI receiving care from the VA or commercial insurance. We hope that the findings from this study spark conversations on policy changes across health insurance, particularly regarding accessibility to care and the need for informal caregivers among people with TSCI. This study also suggests the need for further developments around specialized care centers for patients with TSCI and the need to train healthcare professionals on TSCI. Advancements in specialized care centers could enable patients to seek timely, appropriate, and adequate care, thereby better managing their care plans and overall physical well-being. We also encourage continued methodological discussions and advancements on the use of QDAS for qualitative group comparisons.

ORCID iD

Analay Perez https://orcid.org/0000-0002-2065-7398

Ethical Considerations

Our study was approved by University of Michigan’s Internal Review Board (approval number HUM00213573). All participants provided verbal consent prior to enrollment in the study.