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