Evaluating the role of social media in providing support for family caregivers of individuals with spinal cord injury

Quantitative


INTRODUCTION
A spinal cord injury (SCI) results from damage to the spinal cord causing loss of motor, sensory and autonomic function [1]. The overwhelming consequences experienced after having an SCI impacts many aspects of the individual's life [2]. In Canada, there are~85,556 people living with an SCI, with~1785 Canadians receiving diagnoses of SCI annually [2]. Comparingly, in the United States, there is~296,000 people living with an SCI and~17,900 new cases annually [3]. The economic burden of a traumatic SCI depends on the severity of the injury, ranging from $1.47 million to $3.03 million in Canada [4], and $1.2 to $5.1 million in the United States [3] Almost 56% of individuals with SCI require assistance with Activities of Daily Living (ADLs) [5]. The individuals that are most likely to provide ADLs assistance are immediate family and most commonly are the spouse of the individual with SCI [5]. ADLs that a Family Caregiver of Individuals with Spinal Cord Injury (FC-SCI) assists with may include transfers, transportation arrangements, bowel and bladder management, managing finances, grocery shopping, monitoring for pressure injuries, or emotional support [5]. Most FC-SCI are unpaid, with almost two-thirds of family caregivers not receiving any financial compensations for their caregiving activities [6].
The age of individuals who sustain a SCI is a bimodal distribution with the first group being young adults between the ages of [15][16][17][18][19][20][21][22][23][24][25][26][27][28][29] years and the second being older adults who are 65 years and older [7]. The mean age of caregivers is between 40 and 45 years, which is younger than caregivers for other neurologic conditions [8]. With the young mean age of FC-SCI, the nature of the disability and the unique impairments caused by SCI, FC-SCI are affected differently by their role compared to family caregivers of individuals with other neurologic conditions [9]. Many FC-SCI report physical, emotional, and financial consequences associated with their role [5]. Some emotional consequences include experiences of depression, anxiety, anger, stress, increased social isolation, feelings of helplessness, loss of self, and lower satisfaction with life [8]. Over time, these experiences put FC-SCI at high risk of experiencing caregiver burden and role strain [5].
Caregiver burden is considered an individualized experience that is often defined as "the extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical or spiritual functioning" [5]. Previous research has reported that 40-46% of FC-SCI report moderate to severe levels of caregiver burden [10]. Factors associated with higher perceived burden include greater hours of care, higher care needs of the individual, lack of choice in being a caregiver, and social isolation [10]. The high risk of burden suggests a need to pay close attention to risk factors, management, and interventions to target the well-being of FC-SCI. Due to the caregiver burden, caregivers can experience health and psychosocial problems making them become the "invisible patients", which can affect the caregiving [11].
Social support has been found to be a resource to protect against burden [12]. Social support can refer to the availability of people that an individual feels they can rely on, feel valued, cared about and loved [13]. There are many different types of social support such as emotional support, instrumental support, information support, and social companionship [14]. Previous studies have demonstrated that when caregivers had less social support they experienced significantly higher caregiver burden compared to caregivers that had higher social support [12]. It has also been found that depressive symptoms associated with caregiver burden are inversely proportional to social support, demonstrating the potential positive impact social support can have on these individuals [15]. The high demands of the caregiver role make it difficult to obtain social support, so social support resources need be easily accessible, time-sensitive and adapted for physical constraints for caregivers. Thus, online support may be optimal for caregivers to receive social support [16].
As the internet grows to more than three billion users, technology and social media use provides increasing opportunities to connect with others [17]. Social media is defined as a web-based tool that connects individuals, which can be a powerful tool in the healthcare setting as diffusion of knowledge is fast and far-reaching as well as can be used as a form of support [18]. Past research with family caregivers of individuals with disabilities has examined the use of social media for social support and found that it is commonly used to exchange informational, emotional, and instrumental support [19]. In fact, research has shown that nearly threequarters of adult internet users have sought support, and health information online [20]. Many caregivers to individuals outside of the FC-SCI population have expressed great interest in receiving support through social media [20]. Platforms, such as Facebook, have also been found to have the potential to reach large numbers of family caregivers [21], and may be especially relevant for FC-SCI who may face barriers to accessing in-person support.
The literature reveals the many benefits of social support for the general caregiving population, however, there is a lack of research which specifically focuses on the use of social media for social support among FC-SCI. This study addresses this gap by examining: 1) the amount FC-SCI use social media, 2) type of social media platforms that are being used by FC-SCI or seeking support on related to caregiving, 3) the importance of each social media platform for obtaining support based on the perception of FC-SCI, and 4) the type of social support that is being obtained more by FC-SC-through social media.

METHODS Participants
To be included in this quantitative study, participants had to be a FC-SCI; over 18 years old; residents of Canada or the United States; speak and understand spoken and written English. In addition, the individual with SCI had to reside in the community. The exclusion criteria consisted of FC-SCI who cared for individuals with SCI who were palliative or lived in a supportive housing environment.
FC-SCI were recruited through social media networks on various platforms (i.e., Twitter, Instagram, and Facebook), printed posters, and online promotion from a support network called "Wives and Girlfriends of SCI". The advertisement included a link to the eligibility requirements, the consent form, the survey, and researchers' contact information.

Procedure
Participants completed the survey directly through the link provided on study advertisements. The participants who completed the survey had the option to enter in a draw to win one of three $100 CAD prizes.

Measures
Demographic information. Demographic information collected included age, gender, location, education, and income level and were collected according to range. Caregiving information included relationship to the individual with SCI, years of caregiving, hours of caregiving per week, caregiving activities, family support, and paid support.
Online social support. The "Online Social Support Scale (OSSS)" is a selfreport questionnaire that measures four subscales of online social support: emotional support, social companionship, informational support and instrumental support [14]. OSSS was created based on in-person social support and has been tested on samples from the community [14]. For this study OSSS was used to measure perceived online social support by FC-SCI and instrumental support was excluded as it not relevant to social media, so emotional support, social companionship, and informational support were used. Each subscale consisted of 10 items. Participants were asked to rank their experiences (0 = Never, 1 = Rarely, 2 = Sometimes, 3 = Pretty Often, 4 = A Lot). Higher score indicates higher online social support.
Social Media Usage Questionnaire. Information regarding patterns of social media use was collected via a researcher-developed questionnaire, involving social media platforms used, hours of social media use per week, and level of perceived importance of social media platforms for receiving or providing support. These questions were either multiple choice, select all that apply or on a scale where they ranked the importance (Do not use, Not important, Somewhat important, Very important, Do not want to respond).

Data analyses
Quantitative data was collected using Qualtrics [22] and analyzed by SPSS Inc (Chicago, IL, USA) version 27.0. The code can be accessed through contacting the authors. We used descriptive statistics, including measures of medians, frequencies, and percentages to examine the objectives. To compare the means of the OSSS subscales with each other, we used paired sample statistics.

Participants
The participants from the quantitative survey included 115 FC-SCI ( Table 1). The caregivers mostly identified as a partner or spouse (n = 110; 96%) to the individual with SCI, were female (n = 111; 97%), had full-time employment (n = 60; 52%), lived with the care recipient (n = 114; 99%), and do not care for a child (n = 86; 75%). The median age range was 35-44 years, and median annual household income was $70,000-79,999. Regarding caregiving, the majority of caregivers do not have another family member (n = 92; 80%) or a paid caregiver (n = 85; 74%) to help them care for the individual with the SCI and were not receiving financial payments for caregiving (n = 86; 75%). The most popular response options were caregivers that have been providing care for 1-3 years (n = 33; 29%).

Social media usage and platforms
The findings from the survey revealed that 64% (n = 74) of FC-SCI spent 1-3 hours on social media per day (Table 2). Facebook was identified as the social media platform that is used most by caregivers on a weekly basis, i.e., 94% (n = 108; Table 3). Instagram and YouTube were used by 80% (n = 92) and 57% (n = 66) of caregivers respectively ( Table 3).
Importance of each social media platform Facebook, Instagram, and YouTube were found to be the top three most important social media platforms for receiving or providing support for caregivers (Fig. 1). It was found that 60% (n = 69) of caregivers ranked Facebook as "Very important" and 26% (n = 30) ranked Facebook as "Somewhat important" for receiving or providing support (Fig. 1). For Instagram, 26% (n = 30) caregivers ranked it as "Very Important" and 26% (n = 30) ranked YouTube as "Very Important" (Fig. 1).

Social media for social support
The coefficient alphas were reported as 0.95 for emotional support, 0.94 for social companionship, and 0.95 for informational support [14]. In this study, the alphas were 0.94 for emotional support, 0.91 for social companionship and 0.943 for informational support. The total alpha was 0.96. Informational support has the highest mean value (27.24 ± 7.50) compared to Emotional Support and Social Companionship. The mean and standard deviation were calculated for the three paired samples: emotional support and social companionship, emotional support and informational support, and social companionship and informational support ( Table 4). All three pairs were found to be significantly different in their mean values (p < 0.001). Positive correlations were found for the paired samples ( Table 4). The data were normally distributed except for the emotional support subscale.

DISCUSSION
Current literature on social media support focuses on social media use within diverse caregiving populations, yielding valuable information on the benefits of social media support [19,20,23].   However, there is a lack of literature regarding the potential use of social media for social support among FC-SCI. The current study aimed to examine patterns of social media use, the type of social media used and the potential support from the use of social media by FC-SCI.
Research has shown that caregivers to individuals outside the SCI population use social media support to receive advice, share information, reduce stigma around certain health conditions, discuss daily living stressors, exchange ideas, and express emotions [20]. Social media has been used as a platform by other caregiving populations to pose specific questions that arise in life, receive answers from individuals who can provide their own information and advice, assist caregivers with problem solving, and seek emotional support [24]. This form of support seeking has increased decision confidence, reduced emotional strain, and spousal relationship conflicts with the family member they are caring for [23]. Therefore, when there is a stressful change in health or well-being, similarly to SCI, caregivers may seek support online through social media when needed [23]. With the high number of caregivers that use social media, increasing the level of support on these platforms could promote well-being. It would be beneficial for FC-SCI to have a strong form of online social support, especially if they are not receiving or are not able to receive inperson support.
The findings provided valuable information on social media use patterns among FC-SCI, which may give insight into what social media platforms should be targeted for caregiver support. Among Canadians, the average amount of time individuals spend on social media is 1.53 h a day [25], similar to our finding that FC-SCI use social media between 1 and 3 h a day. Facebook is Canada's most used social media platform in 2022 with 77% of individuals using the platform [25]. This occurrence could explain our finding of Facebook being the most frequently used social media platform among FC-SCI. Previous research looking at family caregivers for people with various disabilities found that caregiver-specific Facebook posts had high levels of reach, and engagement, suggesting that caregiver-specific organizations should continue to utilize Facebook [21]. Thus, the high number of users on Facebook and its high level of reach make it an ideal platform for caregivers to use. The frequency (n = 115) and percentage of each social media platform is displayed. FC-SCI were able to select every platform they use on a weekly basis.  Fig. 1 The importance of social media platforms for receiving and providing support. The social media platforms were all ranked in terms of important for receiving or providing support. The scale of importance is displayed with the frequency (n = 115). "Do not use" and "Do not want to respond" were excluded from the figure for readability purposes. For FC-SCI, informational support was the form of support that was primarily used for providing or receiving support, followed by emotional support and social companionship. This finding contrasts with Warner et al.'s study exploring social media usage during the first 6-months of caregiving for individuals with young adult cancer [26]. The caregivers of the individuals with young adult cancer were found to use social media for receiving or providing emotional support primarily then followed by informational support, validation, companionship, and instrumental support. However, during the 6-month period following the patient's cancer diagnosis, social media posts used by the caregivers containing emotional support declined over time and informational support increased [26]. This finding could suggest that emotional support could be the primary form of support the caregivers are looking for at the initial diagnosis, then later in their caregiving role they may require more information support. In addition, a study by Shensa et al. found the more time young adults spent on social media they had significant lower likelihood of receiving or providing emotional support, which may be the reason why our participants have found they received or provided more informational support on social media than emotional support [27]. Some literature shows how higher social media usage can be associated with more depression symptoms [28] and decreased well-being [29]. Therefore, could suggest that emotional support on social media is not as beneficial as informational support for caregivers.
The results of this study should be evaluated within the context of its limitations. The sample of caregivers recruited for this study were not balanced in terms of gender, with 97% being female. Therefore, male and non-binary caregivers' perspectives were not represented in these results. Additionally, most caregivers were partners to the individual with SCI, so the results may not include the full scope of perspectives of different types of familial caregiving relationships, such as parents, siblings or children who are caregivers. Using a snowball sampling approach led a bias sample with the to the majority being recruited from the Wives and Girlfriends of SCI, who were female caregivers that were the partner of the individual with SCI and were already engaged in social media support groups, particularly Facebook. Our research team attempted to recruit from other social media platforms and sources but was not able to get participants from these sources. Therefore, our data could have an over-representation of the use of social media for social support, particularly Facebook and does not represent caregivers with other genders and with different caregiver-partner relationships. It should be noted that the efforts from Wives and Girlfriends of SCI in engaging the family caregivers' community were substantially more successful. Thus, indicating the importance of partnering with caregiver community stakeholders in the early stages of the study development, which may help with recruitment from hard-to-reach populations such as the FC-SCI community, address the communities research needs and improve knowledge translation [30]. Researchers could try to recruit caregivers from community rehabilitation centres to get a more representative sample of the general community. Future studies could further examine whom the caregivers are engaging with on social media for support to better identify what resources are valuable to them.
CONCLUSION FC-SCI were found to receive or provide support primarily using the social media platforms Facebook, Instagram and YouTube. Clinicians should consider the benefits of online social support for caregivers and investigate providing more interventions for caregivers to help relieve burden. Facebook, Instagram and YouTube should be further examined into the benefits of using them for support and other forms of online support for caregivers should be considered. Future studies should also explore the advantages and disadvantages of caregivers receiving or providing social support on social media and how online platforms can be improved to optimize the support for caregivers.

DATA AVAILABILITY
Data may be available by contacting the researchers.