Skip to main content
NCBI home page
The American Journal of Occupational Therapy logoLink to The American Journal of Occupational Therapy
. 2023 Jun 28;77(3):7703205110. doi: 10.5014/ajot.2023.050093

Informal Caregivers’ Perceptions of Facilitators of Successful Weight Management for People With Spinal Cord Injury

Jessica Presperin Pedersen 1,✉, Linda S Ehrlich-Jones 2, Allen W Heinemann 3, Sherri L LaVela 4
PMCID: PMC10321685  PMID: 37379063

Abstract

Importance: Informal caregivers have valuable insights that occupational therapists can use to prevent and manage problems that may arise in people with spinal cord injury (SCI) because of a lack of physical activity and poor nutrition.

Objective: To assess caregiver-identified facilitators of weight management in people with SCI.

Design: Descriptive qualitative design using semistructured interviews and thematic analysis.

Setting: Regional SCI Care Model System and Veterans Health Administration.

Participants: Informal caregivers (n = 24) of people with SCI.

Outcomes and Measures: Facilitators of successful weight management in care recipients with SCI.

Results: Four themes were identified as weight management facilitators: healthy eating (subthemes: food content, self-control, self-management, and healthy preinjury lifestyle), exercise and therapy (subthemes: occupational and physical therapy, receiving assistance, and resources for exercise), accessibility, and leisure activity or activities of daily living, the latter described as a source of activity (because of required energy expenditure) to facilitate weight management for people with more severe injuries.

Conclusions and Relevance: These findings can inform the development of successful weight management plans by occupational therapists by incorporating feedback from informal caregivers. Because caregivers are involved in many of the facilitators identified, occupational therapists should communicate with the dyad about sourcing accessible places to increase physical activity and assessing in-person assistance and assistive technology needs to promote healthy eating and physical activity. Occupational therapists can use informal caregiver–identified facilitators of weight management to help prevent and manage problems for people with SCI secondary to limited activity and poor nutrition.

What This Article Adds: Occupational therapy practitioners provide therapeutic intervention to people with SCI; this includes attention to weight management from the time of initial injury throughout their lives. This article is novel in the presentation of informal caregivers’ perceptions about successful facilitators of weight management among people with SCI, which is important because caregivers are intimately involved in the daily activities of people with SCI and can be a liaison for occupational therapists and other health care providers about ways to facilitate healthy eating and physical activity.

This article is novel in the presentation of informal caregivers’ perceptions about successful facilitators of weight management among people with spinal cord injury (SCI), which is important because caregivers are intimately involved in the daily activities of people with SCI and can be a liaison for occupational therapists and other health care providers about ways to facilitate healthy eating and physical activity.

People with spinal cord injury (SCI) may experience decreased muscle mass caused by paralysis, with 44% identified as obese as determined by an SCI-specific adjusted body mass index (BMI) classification. (Hatchett et al., 2016). In one study, among 85 participants with SCI who were followed from their initial rehabilitation admission for 5 yr, the BMI classification shifted from below normal, normal, and above normal to higher classifications of overweight, obese, and extremely obese, with the majority of BMI gains occurring in the first year (Crane et al., 2011). The occupational impact of being overweight or obese includes decreased participation in physical activities, employment opportunities, and social activities (Clark et al., 2007). A healthy lifestyle that incorporates a weight management program can help prevent and manage problems that may occur because of inadequate physical activity and poor nutrition behaviors (Gorgey, 2014). Weight management is defined as a long-term commitment to a healthy lifestyle combining sound nutrition and physical activity (Johns et al., 2014; Nielsen & Christensen, 2018). Family and friends who assist with the caregiving of people with SCI (informal caregivers) are often involved in the weight management programs that are part of the pursuit of a healthy lifestyle (LaVela et al., 2015; Williams et al., 2014). The influence of family, friends, and coworkers with regard to weight gain can be positive or negative (Wang et al., 2014). The perceptions of informal caregivers about weight management are critical for facilitating overweight and obesity prevention and management efforts in the person with SCI (LaVela et al., 2022).

Health care providers have emphasized that including informal caregivers in weight management education and strategic planning may be necessary for success (Burkhart et al., 2021). Occupational therapists routinely include informal caregivers during general therapy sessions to facilitate a smooth transition from the therapy setting to the home environment. Occupations of the informal caregiver vary depending on the people involved. The occupational therapist can incorporate occupation as a therapeutic tool to facilitate ways for the informal caregiver to participate successfully in the weight management efforts for the care recipient (Coutinho et al., 2006). A better understanding of the caregivers’ perceptions about facilitators that support participation in healthy eating and physical activity underscores the importance of their involvement in these efforts for the care recipient. This knowledge can guide health care professionals who work with people with SCI and their families to move toward healthy lifestyle behaviors. There is limited research that has focused on caregivers’ perceptions of successful facilitators of weight management for people with SCI. The objective of this study was to provide the perspectives of informal caregivers on perceived facilitators for weight management, including healthy eating and physical activity, for their care recipients with SCI. Occupational therapists can use this information to work with these dyads to prevent and manage problems (e.g., excess weight, restricted mobility) that may arise because of a lack of physical activity and poor nutrition in people with SCI.

Method

Study Design

This was an exploratory descriptive qualitative design using in-depth, semistructured interviews and thematic analysis to learn about informal caregivers’ perceptions of facilitators for weight management in people with SCI.

Ethics

The participants provided informed consent. We ensured the privacy of the participants by de-identifying interview transcripts through assigning alphanumerical codes. The institutional review boards approved the protocol.

Recruitment

We recruited a sample of 24 informal caregivers of people with SCI from two health care and rehabilitation organizations in the Midwest, one serving veterans and the other, civilians. Participants were eligible if they were age 18 yr or older and self-identified as the primary informal caregiver (i.e., the main unpaid provider of ongoing assistance with activities of daily living; ADLs) for a person with SCI. Recruitment of informal caregivers of veterans was conducted through mailed invitations sent to the homes of the veterans. Informal caregivers of civilians were recruited by mailed invitations or a phone call. Informal caregivers were eligible if they self-identified as a primary caregiver of a person with SCI and were involved in any aspect of weight management. At initial contact, informal caregivers were screened to ensure that they were the primary caregivers of people with SCI and that they were involved in the care recipients’ weight management (including healthy eating and/or physical activity).

Data Collection

Surveys

Participants provided demographic information in a brief survey that asked about demographics, caregiving details, and relationship to the person with SCI for whom they provide care.

Interviews

Immediately after the survey, a semistructured interview was conducted using an interview guide. A review of the literature and the research team’s experience guided the development of the interview guide. We used constructs from the biopsychoecological framework to inform the development of the interview guide, because this framework incorporates aspects of body function, activity, and participation while recognizing the influences of physical, cognitive, and environmental factors on experiences (Stineman & Streim, 2010). We pilot tested the interview guide with three informal caregivers and incorporated suggestions on wording and inclusion of items. The refined version was used to conduct interviews in person or by phone. Sample questions from the informal caregiver interview guide are shown in the Appendix. Interviews lasted 45 to 60 min and were audio-recorded. The recordings were transcribed verbatim by a professional transcription service.

Data Analysis

We coded transcripts and analyzed them using thematic analysis steps (Braun & Clarke, 2006). NVivo software was used to manage data (QSR International, 2018). Thematic analysis was driven by the perceptions of informal caregivers regarding facilitators of weight management for people with SCI. Two researchers who were trained in qualitative coding listened to audio-recorded interviews and read transcripts of raw data to familiarize themselves with the data. Using an inductive approach (Bradley et al., 2007), initial codes were developed to create a codebook that was then used to code the data. Each researcher coded the transcripts independently, and then all met and resolved any coding differences. The coded data were explored to investigate themes that embodied patterns of meaning. A third researcher helped resolve discrepancies until 100% agreement was reached, assisted with code modification, and confirmed initial themes. In vivo coding principles were used to name themes and subthemes to emphasize content meaning in the words of the participants, where possible (Frost et al., 2011). A team of three researchers explored relationships between and within themes. As a final step, we checked themes against the transcripts and segments of extracted data to assess fit, adjust codes where needed, and fine-tune the themes until thematic saturation was achieved (i.e., when no new information or concept were gleaned from the data; Ando et al., 2014).

Trustworthiness Strategies

Our use of three interviewers and three researchers for coding and consensus attainment contributed to the trustworthiness (O’Brien et al., 2014) of the thematic analysis. Confirmability (Cypress, 2017; Letts et al., 2007), limiting the bias of the researchers, was established by having a team of three researchers discuss and agree on the thematic analysis. Data dependability was enhanced by keeping an audit trail throughout the transcript review and coding process, as well as through the peer review of the article by people who were not directly involved in the conduct of interviews or coding (Letts et al., 2007).

Results

Informal Caregiver Sample Characteristics

Of the 24 informal caregivers, 83% were female and 17% were male: Seventy-nine percent were White and 21% were Black; 46% were college graduates, 37% had some college or post–high school technology training, and 17% were high school graduates. With regard to the relationship of the caregiver to the person with SCI, 58% were spouses or live-in partners, 16% were friends or other relatives, 13% were siblings, and 13% were children or grandchildren. The average age was 59.2 yr (SD = 12.84; range = 33–79), and their mean duration of caregiving was 13.3 yr (SD = 11.07; range = 1–35 yr). Our sample of care recipients with SCI had a mean age of 56.7 yr (SD = 14.14; range = 26–83), with an average onset age of 38.9 yr (SD = 17.06; range = 18–80), and were 96% male, with 46% having tetraplegia. The average number of years postinjury was 17.9 (SD = 12.49; range = 2–42).

On the basis of the thematic analysis of the interview data, we identified four themes describing informal caregivers’ perceptions of facilitators of successful weight management: healthy eating, exercise and therapy, accessibility, and leisure activity and participation in ADLs as a form of physical activity. Table 1 shows themes and supportive caregiver quotes for each.

Table 1.

Key Themes, Subthemes, and Representative Quotes of Informal Caregivers on Perceived Facilitators of Successful Weight Management of Care Recipients With Spinal Cord Injury

Themes and Subthemes Representative Quotes of Informal Caregivers
Theme 1: Healthy eating
 Subtheme 1A: food content “We usually make salads, and the only thing we need to pick up is lettuce, because we usually have everything else out in the garden, that we use to make our salad.” (CG10)
“We eat fairly healthy. . . . He’ll have a smoothie in the morning, and we typically have a protein powder that goes in with kefir and fruit, banana and apple and some berries.” (CG13)
“I would say we probably eat healthier than most. . . . Dinner is going to be some sort of protein, typically fish or chicken, sometimes red meat, or pork. Various vegetables. Green salad. . . . We don’t do any kind of carbohydrates in terms of like potatoes, grains, things like that.” (CG18)
 Subtheme 1B: self-control “And we don’t, when we go out to dinner, he doesn’t eat a lot of fried junk. He eats things that are pretty good. . . . And [name] is one of these people, disgusting people, that sticks to the plan. So, for example, he likes dark chocolate. He likes those ones that are like eight pieces in it, and he’ll say can you give me two pieces, and I’ll give him two pieces, and that’s all he’ll eat. . . .” (CG12)
“I think just normal discipline. He’s pretty disciplined with that. . . . And he asks for special things without blinking an eye. He’ll say, can you cook this steak or the chicken with no sauce? Just grill it or whatever.” (CG16)
“He actually has very good sensors, I would guess. When he’s full, if there’s two bites on his plate, he’s not going to eat them. . . . He has very controlled sensors in his body. . . . He makes all his decisions, so. . . . Yeah. When he’s full, that’s it. He stops. Cannot give him one extra spoon. He is actually a very good manager of his, I mean he chooses what he likes, and it’s his choice. So, it’s really he tells me what he wants to eat.” (CG17)
 Subtheme 1C: Self-management “He prepares his own food, and he goes to the grocery store and buys what he needs, and he’s trying to eat healthy.” (CG04)
“He is responsible for himself and his daily activities for the most part.” (CG08)
“And he will cook healthy. He’ll do the shopping, or he’ll tell us what to go buy. . . . So, he will cook for me and his dad. And he will cook healthy.” (CG23)
 Subtheme 1D: Lifestyle before injury “Kind of the nutritional values he had beforehand have still carried over, like it was not like he was a really unhealthy individual beforehand So, he definitely still has that palate for healthier food.” (CG04)
“That’s how he grew up. He was never an overweight guy, so he’s always mindful of that and watching. . . . Some of it I guess can be, you’d say, culture a little bit because it’s how he grew up . . . So I think history helps a lot.” (CG16)
“It’s eat your breakfast like a king. Okay. Share your lunch with your friend and give your dinner to your enemy. So, I mean this is the type of food, this is the type of a meal that he had all his life. This is how he ate. I think he was good all his life with his weight management.” (CG17)
“And that was kind of his routine before. So, he’s a pretty rigid guy. He’s very routine. So, he likes to stay in that box.” (CG24)
Theme 2: Exercise and therapy
 Subtheme 2A: Professional (occupational or physical) therapy intervention “Be more active to what’s available to him . . . we come here for therapy one of the days.” (CG02)
“He was very encouraged during those early years by going to physical therapy programs. The VA did have him go to a couple of physical therapists and stuff, and that did help as far as exercise and stuff. If there was something more available, physical therapy or occupational therapy . . . that would be a very, a great deal of help to him.” (CG03)
“He could use therapy to where he had to actively go somewhere, do it, or somebody comes to the home or something.” (CG05)
“He enjoys it just because the therapists are so interesting and nice. And he knows it’s good for him.” (CG13)
“The therapist that we’ve hired at home, they do as much as they can to get him up and moving.” (CG24)
 Subtheme 2B: Receive hands-on help or set-up from someone “We’ve got the caregiver that’s with us now. . . . Sometimes she can get him to walk to the end of our driveway and turn around and come back, so it’s just us kind of pushing him a little bit and encouraging him to do these things.” (CG03)
“We have like a pedal in place, you know, where she uses her arms, and we put her legs on the pedals and then she uses her arms to move the pedal in place.” (CG10)
 Subtheme 2C: Resources (including gym, exercise equipment, and assistive technology) “There’s a gym at his work, it’s also a really good motivating factor for him like having a gym that he can just take the elevator down to and work out.” (CG09)
“His big thing is pushing. [Name] is in a regular chair. . . . He has an Apple watch that he does his pushes. Last year he would do at least 3,000 pushes per day, and he achieved, his goal was to achieve a million pushes in a year, which he did. . . . this year he wants to achieve a million five hundred thousand.” (CG12)
“We do the stander. . . . We were doing the stander twice a week for a while.” (CG13)
“We have a gym in our house, so typically on a daily basis he’ll do some kind of weight regimen, lifting weights. . . . If the weather is good, he will get outside and push on the bike trails near our house. And if the weather is not good, he has a hand cycle, like an upper extremity ergometer that he uses for cardio.” (CG18)
“She follows up with trying to practice what they’ve done at the gym with sits and stands and trying to stretch this way and that way and she goes down there for yoga, she goes down there for boot camp.” (CG21)
“That facility has a therapy pool with a lift so we usually go one to two days a week. That pool has been a godsend. It really does help him feel better. It’s helping him to stand and balance. . . . We have been very fortunate in that we have a lot of rehab equipment at the house.” (CG24)
Theme 3: Accessibility “We have a home he can get out on his own if he wanted to, he can get outside. . . . So, now we have the lift, we are so grateful he can get out and can come to the backyard, and things like that. . . . So those things are good.” (CG02)
“The house is well fixed up for him. It’s safe. It’s got wide halls. There’s no rugs. It’s just, he’s got a counter in the kitchen that he can stand at and do some exercises and stuff. He can get down the stairs on the front of the house. They’re wide. And he can get down the ones in the back, like I said, to go to the patio.” (CG03)
“The house is pretty well set up for his mobility. He can do his own dishes, so he’s active that way.” (CG04)
“Yeah, and another thing is we live in a really, like, the walk score is really high where we live, so you know we can walk to a lot of restaurants and retail locations and stuff like that.” (CG09)
“Like, he’s been traveling alone on public transportation more by himself So now he’s using his arms more, going outside, and getting on public transportation.” (CG15)
Theme 4: Leisure activity and activities of daily living identified as an activity “He takes walks. [We go] to stores just so he can have a place to walk around if he is not walking in the building. Now he is walking with the chair because he has more stability with the chair. [Even if] it is nothing but taking the mop and mopping the floor.” (CG01)
“So, you have balance issues and things like that. And you can mean active in the sense that he dresses himself and he can use a walker for short distances. So, he is not just in his chair. So, he will have to get up to go into the bathroom for catheterization, he showers, he does those things. That is pretty much the only exercises he gets. He doesn’t do any kind of outside exercises.” (CG08)
“An extracurricular activity that she’s involved with at church is handbell choir. And she’s playing handbells. . . . It moves her hand and arms. . . . That’s hand control, arm control, and to show you her interest in doing that she was signed up for sailing for the summer. She loves her water activities . . . swimming, hand sailing.” (CG21)
“And he’s been playing wheel, he’s been on the wheelchair softball team for the, this is his second, he just completed his second season.” (CG23)
Open in a new tab

Note. CG = caregiver.

Theme 1: Healthy Eating

The subthemes of healthy eating included healthy food content, self-control, self-management in eating, and a preinjury lifestyle that incorporated healthy eating.

Subtheme 1A: food content

Informal caregivers explained that a facilitator of healthy eating was the content of healthy food. Content examples included vegetables, fruit, chicken, fish, protein, kefir, and protein powder. The caregivers stated that, for healthier eating, the foods that the care recipients with SCI eliminated, or ate less of, were carbohydrates, potatoes, grains, and red meat.

Subtheme 1B: self-control

Many informal caregivers identified self-control of the person with SCI as a facilitator of healthy eating. Self-control was described as the willpower to stop eating unhealthy food and determine when and what to eat. Caregivers further explained self-control as controlling one’s diet and being health conscious. Self-control behaviors were described as sticking to a plan, limiting the intake of junk food, following nutritional recommended values, and having the capacity to stop eating once full.

Subtheme 1C: self-management

Several caregivers believed that healthy eating reflects effective self-management of the person with SCI. Self-management emphasizes patient responsibility and actively identifying challenges and solving problems to manage weight. Informal caregivers indicated that the ability to independently take responsibility for menu planning, shopping, feeding, or cooking for oneself contributed positively to self-management around healthy eating.

Subtheme 1D: lifestyle before injury

Informal caregivers also expressed that lifestyle before the care receiver’s injury was an important facilitator of healthy eating. This was reflected in their personal history, the environment in which they grew up, cultural influences, and eating patterns and habits before the SCI. Those who had healthy eating habits before their injury tended to return to those habits postinjury as best as they could.

Theme 2: Exercise and Therapy

Several caregivers identified exercise, including exercise related to therapy, as facilitators of weight management. They described three subthemes: occupational or physical therapy; resources (including gyms, exercise equipment, and assistive technology); and hands-on help or set-up with exercise.

Subtheme 2A: occupational or physical therapy

Informal caregivers described physical or occupational therapy in the health care setting or at home as a facilitator of weight management. Caregivers stressed that the therapists not only help with movement and activity but also provide a great amount of encouragement and guidance to people with SCI.

Subtheme 2B: hands-on help or set-up from someone

Some caregivers said that the care recipient with SCI is able to participate in weight management because someone provides hands-on help or set-up (e.g., placing the recipient’s legs on pedals at their request) or more interactive assistance (e.g., aid with walking). The types of people identified as providing assistance included nurses, paid caregivers, and friends who help with exercises or physical activities.

Subtheme 2C: resources (including gym, exercise equipment, and assistive technology)

Some caregivers believed that resources such as owning exercise equipment or having a gym in the home contribute to engagement in weight management efforts. Examples of equipment that facilitated activity included weights, stationary bike, handcycle, push car, and stander. Increased participation in physical activity was also enabled by access to outside resources such as adaptive gyms, pools, and assistive technology such as apps or gadgets such as a Fitbit.

Theme 3: Accessibility

Many caregivers described accessibility as a weight management facilitator. This included access to an outdoor environment and community (including transportation) in addition to access within the home environment. Caregivers stated that having access to the outdoors or an accessible community contributed to weight management efforts for people with SCI. Participants gave examples, such as having a ramp that allows one to get in and out of the house, having a lift, and living in a community that has accessible healthy restaurants and grocery store locations. Ramps and lifts attached to the home allow the person access to the backyard as well as to the community. Caregivers stated that an accessible home facilitates a healthy lifestyle that makes physical activity and healthy eating possible. This includes the removal of rugs, wider doors and halls for self-wheeling, and counters that are accessible (for independent healthy meal preparation). In addition, caregivers stressed that accessible transportation allowed the person with SCI to get to fitness centers, which increased the opportunity to be active and to attend farmer’s markets and fruit stands to facilitate healthy eating. As such, facilitators of weight management can include public transportation, transit service provided by Medicare, and transportation provided by a health care facility or therapy site.

Theme 4: Leisure Activity and Activities of Daily Living Identified as an Activity

Caregivers said that leisure and recreational activities, as well as participation in ADLs, can increase physical activity to promote weight management. They mentioned leisure activities that included sailing, wheelchair sports, walking with a walker or chair, performing in a handbell choir, shopping, gardening, and horseback riding. The caregivers said that participation in ADLs provides some physical activity, especially for people with higher level injuries. Examples that they noted that provided some movement and energy expenditure were brushing teeth, dressing, showering, and doing housework.

Discussion

This study explored facilitators of weight management for people with SCI from the informal caregiver perspective. Weight management facilitators were identified as healthy eating, physical activity, occupational or physical therapy, accessibility in the home and community, and movement or activity from leisure time endeavors or carrying out ADLs.

Incorporating Healthy Eating and Physical Activity

In the present study, caregivers recognized healthy eating and physical activity as facilitators of weight management. Similarly, informal caregivers reported having vital active weight management roles for people with SCI, which included meal planning and preparation, helping the care recipient with physical activity, mutually participating in weight management activities, providing encouragement, and sharing information (LaVela et al., 2021). LaVela et al. (2022) concluded that informal caregivers have an intimate understanding of the obstacles and enablers to weight management for care recipients, making their role essential in facilitating weight management in people with SCI. Other research evidence suggests that a weight management program that combines diet and physical activity is more effective than weight management programs focusing on only one component (Centers for Disease Control and Prevention, 2021; Johns et al., 2014; Nielsen & Christensen, 2018). However, because there are many barriers to weight management in the SCI population (Pellegrini et al., 2021), it is possible that the caregivers discussed healthy eating or physical activity as independent helpful facilitators of weight management because a combination may not always be possible in all care recipients with SCI.

Suggestions for dietary intake for people with SCI, such as addressing secondary health complications through nutrition, have been outlined elsewhere (James & Smith, 2013; Lieberman et al., 2014). This is important because people with SCI are at a higher risk of obesity and related cardiometabolic diseases. Being overweight or obese has direct consequences for mobility, transfers, and function (Pellegrini et al., 2021), and reversing the complications of obesity-related diseases is especially challenging in this population (Gater et al., 2019). Informal caregivers cited nutritional content as one of the main contributors to healthy eating; however, several articles have illustrated the difficulty experienced by people with SCI in maintaining a nutritional diet (Hatchett et al., 2016; Holla et al., 2020). The informal caregivers identified self-control, self-management, and a lifestyle that is conducive to healthy eating as motivators for eating a nutritious diet. Holla et al. (2020) defined self-control toward eating as willpower or intrinsic motivation, self-efficacy, and adopting a healthy lifestyle. Self-management enables people to take responsibility and take action and to shop, cook, and prepare their own meals, which Munce et al. (2016) termed ownership of care. Informal caregivers indicated that successful weight management included physical activity in the form of structured exercise, occupational or physical therapy, leisure activities, or involvement in ADLs that require movement and activity that might constitute physical activity (the latter especially for people with more severe injuries). Caregivers noted that success in the care recipient’s participation in physical activity could include needed assistance in performing or setting up an activity, as well as resources such as a gym or workout equipment (or transportation to these resources) for exercise. Furthermore, access to facilities and equipment facilitates opportunities for and involvement in physical activity (Kehn & Kroll, 2009; Rimmer et al., 2017; Williams et al., 2014), which can help avoid complications and functional issues caused by inactivity.

Involvement of Occupational Therapists and Informal Caregivers in the Care Team of the Person With Spinal Cord Injury

The provision of person-centered care in weight management means that the values, preferences, and needs of people receiving care and their families guide weight management efforts in the health care setting; this includes supporting realistic healthy eating and physical activity goals and is achieved by dynamic interactions among members of a unified care team that includes the people receiving care, their informal caregivers, and health professionals (Coulter & Oldham, 2016). In this study, informal caregivers suggested capitalizing on occupational therapy services to facilitate weight management in people with SCI. Occupational therapy practitioners are well positioned to provide person-centered services that focus on prevention, intervention, or maintenance to address weight management (Reingold & Jordan, 2013).

A scoping review mapping interventions that involve occupational therapists who treated adults who were overweight or obese found that most interventions focused on increasing physical activity, improving nutrition, and managing lifestyle change. Interventions included goal setting, group discussions, phone call support, motivational interviewing, community involvement, and skill training (Nielsen & Christensen, 2018). Lang et al. (2013) administered a survey to 51 occupational therapists in New South Wales, Australia, to identify whether occupational therapists included weight management as part of their intervention. They found that more than half did not consider weight management to be within their workplace role, and 77% reported that they referred dietary issues to the dietitian; however, about two thirds of the respondents provided physical activity treatment advice (Lang et al., 2013). Nielsen and Christensen (2018) found that the involvement of occupational therapists in weight management was poorly defined in several of the articles in their scoping review; however, they did report that some occupational therapists used a person-centered approach to treat people with overweight and obesity by advocating finding enjoyment in meaningful physical activity and other forms of activity that they value most. This is consistent with the present study, in which the involvement of occupational therapists was noted as a facilitator of physical activity.

Future research is warranted to examine ways in which occupational therapists may facilitate healthy eating for these care recipients. SCI health care professionals have reported that a team approach to weight management, which includes informal caregivers in both education and treatment aspects, provided the best opportunity for success (Burkhart et al., 2021; Pellegrini et al., 2021). Person-centered weight management techniques should be used by occupational therapists as a team approach to rehabilitation that incorporates what matters most to the person with SCI, as well as to their informal caregiver, to enhance the potential for success.

Limitations and Strengths

The generalizability of our findings is limited because we focused on a sample of self-identified primary caregivers whose recipients received care at one of two institutions. However, the organizations are two major providers of SCI care—VA, and SCI Model Systems—and likely represent the views of many informal caregivers of veterans and civilians with SCI. The study reflects the informal caregivers’ perceptions of weight management facilitators, not those of the person to whom they provided care. The strength of this research is that it focuses on perceptions of the informal caregiver, who has a critical role in facilitating successful weight management practices for their care recipient. Future studies should interview people with SCI to compare their perceptions with those of their family members.

Implications for Occupational Therapy Practice

This study has the following implications for occupational therapy practice:

  • ▪ Occupational therapy practitioners play a key role in planning interventions, considering the future role of informal caregivers as they assist in successful weight management for their care recipients.

  • ▪ Informal caregiver–identified facilitators focus, in part, on healthy eating and participation in physical activity, which can be incorporated into meaningful activities that focus on occupations of the informal caregiver and the care recipient.

  • ▪ To help prevent and manage problems that occur in people with SCI because of limited physical activity and poor nutrition, occupational therapy practitioners should incorporate weight management as part of rehabilitation treatment options.

Conclusion

In summary, four themes were identified that described informal caregivers’ perceptions of facilitators to successful weight management. Healthy eating, exercise, therapy, accessibility, leisure activities, and ADLs can be incorporated by the occupational therapist into the care plan. Informal caregivers can provide vital information to occupational therapists that can guide the prevention and management of problems that arise in persons with SCI because of limited physical activity and poor nutrition.

Acknowledgment

We thank the informal caregivers for their participation in interviews for this study. The views expressed in this article are those of the authors and do not necessarily reflect the position of the Shirley Ryan AbilityLab or the U.S. Department of Veterans Affairs. 

Appendix

Excerpt from the Informal Caregivers of People With Spinal Cord Injury Interview Guide About Weight Management for People With Spinal Cord Injury (SCI)

  1. Has your loved one with SCI ever participated in any weight management efforts since their injury?
    1. If yes, how would you describe his/her experience?
      PROBES:
      1. What, if anything, made it easier for him/her to manage/lose weight?
      2. What, if anything, made it more difficult for him/her to manage/lose weight?
    2. If no: Why?
      PROBE:
      1. What, if anything, would motivate him/her to want to manage/lose weight?

  2. What, if anything, affects his/her ability to eat healthy?

    PROBES:
    1. What, if anything, makes it easier for him/her to eat healthy?
    2. What, if anything, makes it more difficult for him/her to eat healthy?

  3. If at all, how does his/her environment (i.e., home) make it easier for him/her to eat healthy?

    PROBES:
    1. What about his/her environment, if anything, makes it easier for him/her to eat healthy?
    2. What about his/her environment, if anything, makes it more difficult for him/her to eat healthy?
      1. Has he/she (or you, together) found any strategies to overcome any of the challenges you mentioned?

  4. What, if anything, affects his/her ability to be active?

    PROBES:
    1. What, if anything, makes it easier for him/her to be active?
    2. What, if anything, makes it more difficult for him/her to be active?

  5. If at all, how does his/her environment (i.e., home) effect his/her ability be active?

    PROBES:
    1. What about the environment, if anything, makes it easier for him/her to be active?
    2. What about the environment, if anything, makes it more difficult for him/her to be active?

References

  1. Ando, H., Cousins, C., & Young, C. (2014). Achieving saturation in thematic analysis: development and refinement of a codebook. Comprehensive Psychology , 3. 10.2466/03.CP.3.4 [DOI] [Google Scholar]
  2. Bradley, E. H., Curry, L. A., & Devers, K. J. (2007). Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Services Research , 42, 1758–1772. 10.1111/j.1475-6773.2006.00684.x [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology , 3, 77–101. 10.1191/1478088706qp063oa [DOI] [Google Scholar]
  4. Burkhart, L., Pellegrini, C. A., Jones, K., & LaVela, S. L. (2021). Strategies used by providers to support individuals with spinal cord injury in weight management: A qualitative study of provider perspectives. Spinal Cord Series and Cases , 7, 65. 10.1038/s41394-021-00426-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Centers for Disease Control and Prevention. (2021). Healthy weight, nutrition, and physical activity. Retrieved from https://www.cdc.gov/healthyweight/index.html [Google Scholar]
  6. Clark, F., Reingold, F. S., & Salles-Jordan, K.; Commission on Practice. (2007). Obesity and occupational therapy (position paper). American Journal of Occupational Therapy , 61, 701–703. 10.5014/ajot.61.6.701 [DOI] [PubMed] [Google Scholar]
  7. Coulter, A., & Oldham, J. (2016). Person-centred care: What is it and how do we get there? Future Hospital Journal , 3, 114–116. 10.7861/futurehosp.3-2-114 [DOI] [PMC free article] [PubMed] [Google Scholar]
  8. Coutinho, F., Hersch, G., & Davidson, H. (2006). The impact of informal caregiving on occupational therapy: Practice review and analysis. Physical and Occupational Therapy in Geriatrics , 25, 47–61. 10.1080/J148v25n01_04 [DOI] [Google Scholar]
  9. Crane, D. A., Little, J. W., & Burns, S. P. (2011). Weight gain following spinal cord injury: A pilot study. Journal of Spinal Cord Medicine , 34, 227–232. 10.1179/2045772311Y.0000000001 [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Cypress, B. S. (2017). Rigor or reliability and validity in qualitative research: Perspectives, strategies, reconceptualization, and recommendations. Dimensions of Critical Care Nursing , 36, 253–263. 10.1097/DCC.0000000000000253 [DOI] [PubMed] [Google Scholar]
  11. Frost, N., Holt, A., Shinebourne, P., Esin, C., Nolas, S. M., Mehdizadeh, L., & Brooks-Gordon, B. (2011). Collective findings, individual interpretations: an illustration of a pluralistic approach to qualitative data analysis. Qualitative Research in Psychology , 8, 93–113. 10.1080/14780887.2010.500351 [DOI] [Google Scholar]
  12. Gater, D. R. Jr., Farkas, G. J., Berg, A. S., & Castillo, C. (2019). Prevalence of metabolic syndrome in veterans with spinal cord injury. Journal of Spinal Cord Medicine , 42, 86–93. 10.1080/10790268.2017.1423266 [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Gorgey, A. S. (2014). Exercise awareness and barriers after spinal cord injury. World Journal of Orthopedics , 5, 158–162. 10.5312/wjo.v5.i3.158 [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Hatchett, P. E., Mulroy, S. J., Eberly, V. J., Haubert, L. L., & Requejo, P. S. (2016). Body mass index changes over 3 years and effect of obesity on community mobility for persons with chronic spinal cord injury. Journal of Spinal Cord Medicine , 39, 421–432. 10.1080/10790268.2015.1133482 [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Holla, J. F., van den Akker, L. E., Dadema, T., de Groot, S., Tieland, M., Weijs, P. J., & Deutekom, M. (2020). Determinants of dietary behavior in wheelchair users with spinal cord injury or lower limb amputation: Perspectives of rehabilitation professionals and wheelchair users. PLoS ONE, 15(1), e0228465. 10.1371/journal.pone.0228465 [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. James, K., & Smith, J. (2013). Eat well, live well with spinal cord injury. PVA Education Foundation. [Google Scholar]
  17. Johns, D. J., Hartmann-Boyce, J., Jebb, S. A., & Aveyard, P.; Behavioural Weight Management Review Group. (2014). Diet or exercise interventions vs combined behavioral weight management programs: a systematic review and meta-analysis of direct comparisons. Journal of the Academy of Nutrition and Dietetics , 114, 1557–1568. 10.1016/j.jand.2014.07.005 [DOI] [PMC free article] [PubMed] [Google Scholar]
  18. Kehn, M., & Kroll, T. (2009). Staying physically active after spinal cord injury: A qualitative exploration of barriers and facilitators to exercise participation. BMC Public Health , 9, 168. 10.1186/1471-2458-9-168 [DOI] [PMC free article] [PubMed] [Google Scholar]
  19. Lang, J., James, C., Ashby, S., Plotnifkoff, R., Guest, M., Kable, A., . . . Snodgrass, S. (2013). The provision of weight management advice: an investigation into occupational therapy practice. Australian Occupational Therapy Journal , 60, 387–394. 10.1111/1440-1630.12073 [DOI] [PubMed] [Google Scholar]
  20. LaVela, S. L., Jones, K., Heinemann, A. W., Bartle, B., & Ehrlich-Jones, L. S. (2021). Motivators, goal setting, and helpful feedback for weight management among individuals with spinal cord injury. Rehabilitation Psychology , 66, 257–264. 10.1037/rep0000385 [DOI] [PubMed] [Google Scholar]
  21. LaVela, S. L., Landers, K., Etingen, B., Karalius, V. P., & Miskevics, S. (2015). Factors related to caregiving for individuals with spinal cord injury compared to caregiving for individuals with other neurologic conditions. Journal of Spinal Cord Medicine , 38, 505–514. 10.1179/2045772314Y.0000000240 [DOI] [PMC free article] [PubMed] [Google Scholar]
  22. LaVela, S. L., Pedersen, J., Ehrlich‐Jones, L., & Heinemann, A. W. (2022). Informal caregivers’ self‐identified roles in facilitating health‐promoting behaviors for weight management in community‐dwelling care recipients living with spinal cord injury in the United States. Health and Social Care in the Community , 30, e1585–1598. 10.1111/hsc.13585 [DOI] [PubMed] [Google Scholar]
  23. Letts, L., Wilkins, S., Law, M., Stewart, D., Bosch, J., & Westmorland, M. (2007). Guidelines for critical review form—Qualitative studies (Version 2.0). McMaster University Occupational Therapy Evidence-Based Practice Research Group. [Google Scholar]
  24. Lieberman, J., Goff, D. Jr., Hammond, F., Schreiner, P., Norton, H., Dulin, M., . . . Steffen, L. (2014). Dietary intake and adherence to the 2010 Dietary Guidelines for Americans among individuals with chronic spinal cord injury: A pilot study. Journal of Spinal Cord Medicine , 37, 751–757. 10.1179/2045772313Y.0000000180 [DOI] [PMC free article] [PubMed] [Google Scholar]
  25. Munce, S. E. P., Webster, F., Fehlings, M. G., Straus, S. E., Jang, E., & Jaglal, S. B. (2016). Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery. BMC Neurology , 16, 11. 10.1186/s12883-016-0534-2 [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. Nielsen, S. S., & Christensen, J. R. (2018). Occupational therapy for adults with overweight and obesity: Mapping interventions involving occupational therapists. Occupational Therapy International , 2018, 7412686. 10.1155/2018/7412686 [DOI] [PMC free article] [PubMed] [Google Scholar]
  27. O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for reporting qualitative research: a synthesis of recommendations. Academic Medicine , 89, 1245–1251. 10.1097/ACM.0000000000000388 [DOI] [PubMed] [Google Scholar]
  28. Pellegrini, C. A., Burkhart, L., Jones, K., & LaVela, S. L. (2021). Health provider-identified barriers and facilitators to weight management for individuals with spinal cord injury. Spinal Cord , 59, 1061–1071. 10.1038/s41393-021-00614-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
  29. QSR International. (2018). NVivo (Version 12) [Computer software]. [Google Scholar]
  30. Reingold, K. S., & Jordan, J. (2013). Obesity and occupational therapy [Position Paper]. American Journal of Occupational Therapy , 67(Suppl.), S39–S46. 10.5014/ajot.2013.67S39 [DOI] [PubMed] [Google Scholar]
  31. Rimmer, J. H., Padalabalanarayanan, S., Malone, L. A., & Mehta, T. (2017). Fitness facilities still lack accessibility for people with disabilities. Disability and Health Journal , 10, 214–221. 10.1016/j.dhjo.2016.12.011 [DOI] [PubMed] [Google Scholar]
  32. Stineman, M. G., & Streim, J. E. (2010). The biopsycho-ecological paradigm: a foundational theory for medicine. PM&R , 2, 1035–1045. 10.1016/j.pmrj.2010.06.013 [DOI] [PMC free article] [PubMed] [Google Scholar]
  33. Wang, M. L., Pbert, L., & Lemon, S. C. (2014). Influence of family, friend and coworker social support and social undermining on weight gain prevention among adults. Obesity , 22, 1973–1980. 10.1002/oby.20814 [DOI] [PMC free article] [PubMed] [Google Scholar]
  34. Williams, T. L., Smith, B., & Papathomas, A. (2014). The barriers, benefits and facilitators of leisure time physical activity among people with spinal cord injury: a meta-synthesis of qualitative findings. Health Psychology Review , 8, 404–425. 10.1080/17437199.2014.898406 [DOI] [PubMed] [Google Scholar]

Articles from The American Journal of Occupational Therapy are provided here courtesy of American Occupational Therapy Association/AOTA Press

RESOURCES