Introduction

Overweight/obesity are prevalent conditions among individuals with spinal cord injury (SCI) with ~60% meeting criteria for either overweight or obesity [1]. Following injury, many individuals will continue to gain weight and their body mass index will likely increase over time [1, 2]. Collectively, SCI and overweight/obesity can lead to consequences such as cardiometabolic or metabolic syndrome [3], heart disease [4, 5], and diabetes [4, 6].

Recommendations among the general population for behavioral weight loss, which can reduce the consequences of excess weight, include the use of behavioral strategies to reduce caloric intake and increase physical activity levels [7]; however, individuals with mobility impairments, including SCI, may face unique challenges when attempting to modify diet and physical activity behaviors. Common barriers to physical activity and sport participation among individuals with SCI include a lack of information, financial and accessibility limitations, psychological challenges, and lack of support of others to aid with the activity [8,9,10,11,12]. Less is known about barriers individuals with SCI face relating to maintaining a healthy diet or weight management. While physical activity plays a role in weight management, it is only a proportion of the energy balance equation. In order to develop effective weight management programs for individuals with SCI, it is necessary to better understand all of the behaviors and factors influencing weight management.

Individuals with SCI have more contacts with the healthcare system compared to the general population [13]; thus, healthcare providers have a unique perspective on the factors that help or hinder weight management among those with SCI. Even though healthcare visits may not be focused on weight management, many providers who care for individuals with SCI are likely aware of obesity-related consequences and may see unique challenges individuals face. Therefore, the purpose of this study was to examine the barriers and facilitators of weight management in individuals with SCI from health care providers’ perspectives. Given the lack of research on the factors that influence weight management in individuals with SCI, a qualitative approach was needed to explore factors that help or interfere with weight management behaviors from the provider perspective. This study will serve as the first step in gaining a comprehensive understanding of the factors that influence weight management in individuals with SCI.

Methods

Health care providers who care for individuals with SCI were recruited from the Veterans Health Administration (VHA) and the Shirley Ryan AbilityLab (SRALab) SCI Model Systems facilities. The VHA SCI/D System of Care includes 24 regional SCI/D Centers, which provides comprehensive, coordinated, lifelong care delivered by interdisciplinary teams to individuals with SCI. The SRALab within the Midwest Regional SCI Care System is one of 14 SCI Model System Centers across the USA and includes comprehensive medical, vocational, and other rehabilitation services for individuals with SCI. Providers who were involved in SCI weight management care were recruited via referrals from SCI leadership or via SCI provider-specific listservs. The study was approved by the Hines VA and Northwestern University Institutional Review Boards.

Semi-structured interviews were conducted with participants by trained interviewers with previous interview experience (KJ, LB). An interview guide was used that was developed based on a literature review to explore and elicit healthcare providers’ perspectives of the barriers, facilitators, and preferences for weight management that individuals with SCI face. Interviews were audio-recorded and lasted about 60 min. For this current paper, the primary focus is on the results relating to the barriers and facilitators of weight management. Among the interview questions for this study, participants were specifically asked: (1a) What do you think are the biggest barriers to weight management in persons with SCI? (1b) Describe what you think would be the best way to overcome these barriers. (2a) What do you think are the biggest facilitators to weight management in persons with SCI? (2b) Describe how you think these facilitators could be integrated into health care management.

Qualitative analysis

Interviews were deidentified, transcribed verbatim, and verified by an external professional transcription service. Using thematic analysis methodology [14, 15], three research team members with experience in qualitative methodology (CAP, LB, SLL) and backgrounds in exercise physiology, nursing, and public health independently coded several transcripts. Open coding was used, which allowed for codes to emerge based on each coders interpretation of the data, and our work emphasized content quality rather than quantity [14]. Collectively, the coders then met to discuss the codes that emerged, resolve any discrepancies, and develop an initial codebook. Transcripts were then independently coded by all three research team members. The group met to review and compare coding for each transcript, discuss discrepancies until consensus and agreement was met, and modify the codebook based on additional codes that emerged until saturation occurred [16]. The group then reviewed all themes and subthemes that emerged. NVivo qualitative analysis software version 12 was used to organize and manage data (QSR International, version 12 NVivo, 2018, Doncaster, Victoria, Australia).

Results

A total of 25 VHA or Model Systems SCI healthcare provider participants participated (Table 1). Participants were primarily female (88%), 60% were between the ages of 26–49, and provided care for individuals with SCI for an average of 10 years (range: 1–29 years). Participants included physicians, nurses, therapists, social workers, psychologists, and dieticians.

Table 1 Healthcare provider participant characteristics.
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Participants discussed barriers and facilitators to weight management faced by individuals with SCI. Based on the interview discussions, 16 unique subthemes emerged for barriers to weight management and seven subthemes emerged for facilitators for weight management in SCI (Table 2). Barrier and facilitator subthemes were classified into the following categories: individual-level factors, socio-environmental factors, and organizational factors. Participant sample quotations by subtheme for barriers and facilitators are presented in Tables 3 and 4, respectively. Participants are identified by ID and provider type.

Table 2 Barriers and facilitators for weight management in individuals with spinal cord injury.
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Table 3 Barriers for weight management in individuals with spinal cord injury and related quotations.
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Table 4 Facilitators to weight management in individuals with spinal cord injury and related quotations.
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Barriers to weight management in SCI

Individual-level barriers

Physical ability and mobility limitations

The most frequently discussed barriers related to physical ability and mobility limitations. Participants discussed how most patients with SCI have fewer opportunities to participate in exercise due to mobility limitations and how physical ability could limit healthy eating.

“Unfortunately for patients with higher injuries, so cervical level injuries, their opportunities for exercise are really limited.” [HP01, Occupational therapist]

Lack of interest in wellness and healthy lifestyle

Participants indicated that many patients had a lack of interest in wellness before the injury, which hindered weight management efforts post-injury. They noted that some patients are not interested or motivated to participate in weight management efforts and education.

“I mean there’s no point pursuing weight management goals if the SCI person is not willing to do it or not interested in doing it…their lack of interest, [HP11, Nurse Practitioner]

Psychological barriers

Providers discussed psychological obstacles to managing weight, such as early emotional adjustment to their injury, feelings of stress and depression around their injury, body image concerns, and ineffective coping strategies.

“Another factor too that I think plays into it really is depression as well and just coping, and sometimes eating can become a coping mechanism for a lot of newly injured spinal cord injury patients. You can see sometimes like a dramatic weight gain in the first year of spinal cord injury because that’s how they cope.” [HP17, Nurse]

Lack of knowledge on weight management

Participants highlighted how individuals with SCI and their caregivers may lack knowledge to properly manage weight, may be overwhelmed with information, or may not want to participate in SCI weight management education offered.

“Lack of education. A lot of patients, they don’t know how to manage their diet. They don’t know what a serving is of meat or a serving of vegetables.” [HP21, Kinesiotherapist]

Poor dietary strategies

Provider participants identified poor diet and lack of healthy dietary strategies as barriers. Individuals with SCI may not have a well-balanced diet and have several unhealthy dietary habits. Some providers indicated that food may be one of the last things that is enjoyable and pleasurable for individuals following injury, which leads to eating unhealthy food options.

“Lack of a well-balanced diet I think is a big factor or, if the [individual with SCI] can’t stand up, they may be more prone to eating convenience food that have much higher caloric value.” [HP16, Social worker]

Barriers related to aging, comorbidities and SCI-related conditions

Participants discussed how individuals with SCI may have medical conditions that affect their ability to participate in certain physical activities or may be on medications that have side effects that influence fluid retention and/or may cause weight gain.

“A spinal cord injury patient may be a perfect candidate to swim; however, bowel and bladder issues could get in the way of that, so I think that’s a big factor.” [HP16, Social worker]

Altered body composition and decreased metabolism

Providers highlighted the barrier of loss of muscle mass and muscle atrophy post-injury. As a result, individuals with SCI experience a lower metabolic rate and overall lower energy expenditure and may not be able to expend a sufficient number of calories through “effective exercise” to properly manage their weight.

“Loss of lean body mass with a spinal cord injury can lead to a lower metabolic rate. I think that’s a big factor too.” [HP16, Social worker]

Limited time and effort for weight management behaviors

Providers noted that individuals with SCI may have limited time to engage in healthy eating and exercise weight management strategies due to the time needed to perform basic activities of daily living.

“Getting out and exercising with someone who has a spinal cord injury takes more effort than just getting up off a sofa and walking down the street with your partner. Similarly, the meal prep is oftentimes more time consuming.” [HP22, Physician]

Socio-environmental barriers

Challenges with family support for weight management

Family members may experience burden and lack time to help with weight management. Participants also discussed challenges in how much caregivers enable unhealthy behaviors or push healthy behaviors so much that it causes stress.

“Someone who wants to be supportive of you, but they’re doing it in a way that has a negative impact. For example, if someone needs to cut calories, and you have a family member who is constantly on them or riding them to a point where it creates anxiety or stress, it’s just not productive to what that person is actually trying to do, even though that person means well.” [HP10, Registered Dietician]

Lack of access to weight management resources

Providers identified a lack of access to community resources (e.g., fitness facilities, healthy food) tailored to meet the needs of individuals with SCI as a barrier. Participants also identified challenges preparing healthy food or finding adaptive equipment for use by individuals with SCI.

“They don’t have the correct resources, or if they get resources, they’re not specific to SCI.” [HP13, Recreation therapist]

Dependency on support from others to help with weight management

Another barrier is that individuals with SCI may not be able to exercise on their own or may need assistance in setting up exercise equipment. Participants also noted a lack of help in acquiring healthy foods or preparing healthy meals.

“Without that surrounding support structure, it’s hard to achieve the things you want with diet and weight goals.” [HP10, Registered Dietician]

Difficulties obtaining weight measurement

Participants discussed patients being unable to regularly measure body weight measure and are often limited to only being weighed by a healthcare provider.

“It’s hard to weigh patients. They can’t weigh themselves at home for the most part” [HP18, Nurse practitioner].

Financial limitations

Participants discussed that patients may not be able to afford healthy foods and may resort to unhealthy foods, such as fast food, as it cheaper and easily available. Individuals with SCI might not have the financial means to pay for continuous physical therapy, gym memberships, or community weight management programs.

“They can’t see a physical therapist for life. No one has money for that.” [HP02, Physical therapist].

Lack of transportation

Participants noted that if individuals with SCI are unable to independently use transportation or do not have the means for other forms of transportation, it may be extremely challenging to get to an exercise facility, therapy session, grocery store, or community-based weight management program.

“Transportation is always an issue.” [HP19, Physical therapist]

Organizational-level barriers

Lack of integration or inconsistent weight management support in the healthcare system

Participants stated that weight management is not consistently integrated within or discussed during healthcare appointments. Some mentioned there were not enough dietician referrals or that patients receive contradicting weight management information from providers.

“Sometimes what I have seen is that their dietician is telling them one thing, and then they go to their SCI provider, and they’re told kind of contradicted information.” [HP13, Recreation therapist]

Pushing calorie intake early post-injury

During the acute phase of injury, it is common for providers to increase patients’ calorie and protein intake to facilitate healing. The barrier occurs when there is not an end point or provider recommendation to stop the excess caloric intake, leading to unnecessary weight gain and challenges trying to reverse their new eating habits.

“I think we have the tendency to tell them that they need to get enough protein and start increasing their calories because their body is burning so many calories with the process they’re going through. Then that just abruptly tailors off, and that’s when you see the weight gain.” [HP01, Occupational therapist]

Facilitators to weight management in SCI

Individual-level facilitators

Motivation

Participants believed that it is helpful for individuals with SCI to have the internal motivation to change behaviors. They discussed the importance of having reasons to manage weight, such as to make transfers easier, live longer, and decrease risk of health concerns (e.g., chronic diseases and pressure injuries).

“The person needs to have the internal motivation to want to do weight management themselves. [HP02, Physical therapist]

Education and knowledge pre/post-injury about weight management

Providers discussed how baseline education and knowledge about weight management behaviors (e.g., diet, exercise) that patients and caregivers have before as well as after the injury can serve as facilitators for patients with SCI diet and activity efforts.

“Knowledge of what is safe, what they can do, what they shouldn’t be doing…an understanding of how diet and exercise relate and how different your body kind of handles things after SCI.” [HP04, Occupational/physical therapist]

Exercise and physical activity

Participants stated that regular participation in any type of activity that helps individuals stay active, whether that is organized or competitive sports, or exercises like yoga or CrossFit, is a weight management facilitator.

“Exercise would be a good strategy…exercise if doable in some form is very important.” [HP16, Social worker]

Socio-environmental facilitators

Positive support network

Providers highlighted that having a good support network was helpful toward weight management efforts. A support system can include informal caregivers, family members, health care teams, and advocacy and community groups.

“Family and social support is a big factor, especially for patients who aren’t independent. Having somebody, whether that’s somebody that can help them exercise or get them to where they can exercise or can help them prepare healthy food.” [HP03, Physical therapist]

Access to and use of healthy dietary strategies

Participants discussed the importance of access to nutritional foods and a healthy diet. Participants identified access to fruits and vegetables and meal delivery or prep services as weight management facilitators.

“There’s niches out there that will come to your house and fix a week’s worth of food.” [HP18, Nurse practitioner]

Access to exercise facilities and adaptive equipment

Participants identified having a gym membership or access to fitness facilities as helpful for weight management. Having access to modified/special equipment or individualized workout plans for SCI also facilitates weight management.

“Accessible pieces of equipment to enable people to go out and do it out in the environment. Increasing accessibility in the environment.” [HP22, Physician]

Participating in weight management with others

Provider participants identified group weight loss or activity programs as facilitator’s to weight management. Organized activities, such as wheelchair games or other sports activities, create healthy competition and fun among peers.

“Staying active, participating in like the wheelchair games and things like that. Anything that keeps activity up is certainly helpful.” [HP23, Physician]

Discussion

This study was one of the first to explore the barriers and facilitators to weight management among individuals with SCI from the perspectives of SCI healthcare providers. Broadly, providers identified a plethora of individual-level, socio-environmental, and organizational barriers. Some of the barriers included physical ability/mobility limitations, challenges interfering with family or support for weight management, and lack of interest in wellness by the individual with SCI. Healthcare providers also mentioned individual-level and socio-environmental social facilitators that helped individuals with weight management. Some of the specific facilitators mentioned included having a positive support network, being motivated, and having knowledge on weight management.

It is not surprising that healthcare providers commonly mentioned physical limitations and altered body composition as barriers to weight management, particularly as these have been previously identified as barriers to exercise in SCI [10, 11]. Following SCI, individuals experience changes in their level of function based on the level of injury, and as a result, reductions in muscle mass [17] and decreased resting energy expenditure [18]. Participants also highlighted that as a result of the injury and subsequent bodily changes, these individuals have fewer opportunities to participate in leisure physical activities or exercise and more challenges in shopping and preparing meals. Similarly, among wheelchair users, function impairments, and unadjusted kitchens were found to influence dietary behaviors [19], suggesting that the inability to prepare a healthy meal, due to either physical ability or not having an accessible kitchen, may lead this population to resort to unhealthier options. Future weight management studies may want to focus on identifying strategies to address the negative impacts that physical ability and mobility limitations have on both exercise and healthy eating.

The influence of others on weight management participation among individuals with SCI is apparent from this study, as provider accounts of support (or lack of support) from others emerged as both an important barrier and facilitator to weight management. Family and paid caregivers may experience competing responsibilities, lack of time, and exhaustion that contribute to choosing easier unhealthier food options and an inability to help the individual with SCI participate in exercise. This is consistent with barriers identified in the exercise literature [10, 11]. Among individuals with SCI, social support is positively linked to better health and functioning [20], and was identified as a facilitator for weight management by health care providers in the current study. More research is needed to identify ways to enhance social support or improve healthy family dynamics for those with SCI.

Access to weight management resources was described as important for weight management behaviors in SCI. Current research indicates having access to exercise facilities and adaptive equipment aids with participation in leisure time physical activity in individuals with SCI [12]. Likewise, difficulties accessing or going grocery shopping is a common barrier among people with physical disabilities [21]; however, grocery and meal delivery services are becoming more available and have shown positive effects on the home food environment [22], dietary intake [23], and well-being [23] in other populations. This potential resource may not be available in certain areas (e.g., food deserts, rural locations) nor financially feasible, as financial constraints is a known barrier in the literature [11] and was found in the current study. However, healthy meal delivery services may be able to help increase access to healthy foods among individuals with SCI.

Motivation and interest in weight management also emerged as both a barrier and facilitator for weight management in SCI. Healthcare providers noted that the individual with SCI should be motivated to want to manage their weight and that lack of interest in their health and wellness, may hinder their interest and ability to manage their weight. A lack of motivation is a common barrier for lifestyle change noted in the general population [24], as well as among those with SCI for diet [25] and exercise [8, 12] Future programs may need to explore options to incorporate such factors to increase and maintain motivation for weight management among individuals with SCI.

This is one of the first studies to explore barriers and facilitators to weight management in SCI from the viewpoint of the health care providers, however, some limitations exist. The healthcare providers who participated in this study only represent a small proportion of healthcare professions that provide care for individuals with SCI, which limits generalizability. Similarly, the SCI patient population that these healthcare provider participants care for may differ from the SCI population, including differences in age, income, insurance, and access to weight management resources, also limiting generalizability to other SCI provider practices, locations, or healthcare professionals.

In conclusion, healthcare provider participants identified individual-level, socio-environmental, and organizational barriers and facilitators that individuals with SCI face in weight management. Future studies should examine weight management efforts from the individual with SCI’s perspective, as well as from the caregivers. Finally, future weight management programs and resources should aim to target identified barriers and promote strategies to increase facilitators to improve weight management in this population.