The role of internet-based digital tools in reducing social isolation and addressing support needs among informal caregivers: a scoping review

Internet-based platforms enabled informal caregivers to access others’ perspectives as well as to gain various forms of support from others. According to Fox and Brenner, caregivers are more likely than other internet users to leverage online social tools related to health [25]. Specifically, caregivers are more likely to read someone else’s personal health story online and to look online for someone with similar health concerns than non-caregivers. This finding corresponds to findings of the other reviewed studies. For example, participants in Lichenstein and colleagues’ study sought support and advice through an online discussion board [31]. They looked to other caregivers for knowledge and advice to assist with their challenges. Posts from caregivers were often heartfelt, as most shared their stories and tried to comfort those in need. When they explored what types of support are exchanged within two Facebook autism-support-group pages, Roffeei and colleagues found that informational and emotional support were most frequently offered and sought by caregivers; they often asked for advice and suggestions and built friendships within the online community [34]. Similarly, when Hansen et al. explored the experiences of family caregivers participating on an illness blog, they found that all participants described wanting to find and accept support from others experiencing similar situations [28].

Sharing is a feature of online support. A study that examined cancer-related Facebook pages found that cancer caregivers used the platform to mobilize emotional, informational, and logistical support as they communicated with others and sought cancer-related advice, resources, and information [26]. Lichenstein et al. elaborated on this finding. They found that caregivers of people with pulmonary hypertension turn to online support groups, seeking other caregivers who share their knowledge and advice and people to listen to their personal stories [31]. Other researchers also found that online support groups offered a forum for sharing personal stories of caregiving experiences with others. These stories satisfy caregivers’ needs for catharsis through venting their emotions as well as exchanging various types of support [24, 35, 37‐39].

Some caregivers may experience isolation and loneliness as a result of their caregiving role. These feelings often originate from difficulties with leaving the people they care for and from a dearth of friends and family who understand what they are going through. Stjernswärd and Hansson reported that caregivers of people living with depression described their own feelings of loneliness as a “lonesome rollercoaster.” [36] Caregivers discussed how they would feel guilty if they left their care recipients alone to socialize. This guilt resulted in a thinning social network and further loneliness. Similarly, caregivers of people living with chronic conditions in Diefenbeck et al.’s study described feeling lonely and isolated [24].

Most of the reviewed studies found that, by using internet-based platforms, caregivers received social support and accessed resources, all while feeling integrated into a meaningful online social network. Additionally, internet-based platforms helped caregivers gain a sense of social inclusion and belonging as members of an online community where others could understand what they were experiencing. Sullivan described how study participants, knowing that others are going through similar experiences, felt less isolated and more a part of a community [37]. This finding is consistent with the findings of other reviewed studies. For instance, McKechnie and colleagues examined postings on an online forum for carers of people living with dementia and reported that the notion of “social similarity” was especially beneficial to them [33]. This notion refers to finding others who are in the same situation. Caregivers gained comfort in knowing that they were not alone when they connected with others who could understand the challenges they faced and what they were experiencing. Kim’s participants described the sense of belonging that they got from being Facebook group members as particularly effective in reducing their feelings of isolation [29]. These participants explained that this sense of belonging they gained resulted from the personal connections they made in the group and the camaraderie that developed among caregivers who had gone through similar experiences [29]. Furthermore, when Stephen et al. examined an online cancer support group, they found that carers valued the closeness they felt with other group members [35]. Participants’ experiences resonated with others, and there was a common understanding among group members. This understanding forged strong bonds among group members, producing a sense of belonging that, in turn, reduced loneliness. Not only did group members feel understood, they felt accepted.

Dam and colleagues found that an online social-support intervention called Inlife benefitted caregivers of people living with dementia [22]. The authors used the following measures to evaluate the intervention’s outcomes: Multidimensional Scale of Perceived Social Support (MSPSS), Social Support List (SSL-12), and Loneliness Scale (LS). The evaluation showed improvement in perceived family support and reduced loneliness in the highly active Inlife user group. Users also reported that Inlife helped them share their experiences with others. Similarly, Marziali and Garcia used the MSPSS and content analysis to examine how caregivers experienced two interventions: online messaging and online video conferencing [32]. Their MSPSS results demonstrated no significant change in perceived social support before and after the online messaging group. However, for the online video-conferencing group, the MSPSS demonstrated significant positive changes in perceived social support. The authors’ qualitative analysis of follow-up interviews with participants showed mixed reactions to the online-messaging intervention. In contrast, participants in the video-conferencing group felt very connected through the sharing of experiences by multiple caregivers. They described receiving a lot of emotional and informational support from other caregivers.

After studying an online support group for caregivers of people with Alzheimer’s, Kruk found that exposure to other carers’ parallel experiences as well as recognition and validation of their own experiences reduced participants’ feeling of loneliness and social isolation [30]. Blusi et al. also reported that caregivers appreciated the ability to visit other caregivers through the internet [21]. These visits allowed them to leave their homes at least virtually and thus reduced their feelings of isolation. The authors contended that internet-based caregiver support enabled their study participants to form social networks. In addition, Blusi and colleagues highlighted that, for family carers, the internet enabled them to recapture a valued position in society and “be somebody.” [20] The authors argued that internet-based support is particularly important for caregivers in rural areas, because it can reduce loneliness by providing new opportunities for social inclusion.

The studies we reviewed reported the various benefits of internet-based platforms that encouraged informal caregivers to find social support on line. Researchers highlighted advantages such as anonymity, instant access, receiving support within one’s own home, and being able to carefully craft messages before posting to online forums [23]. They also indicated that in-person support groups may be challenging to access due to constraints associated with caregiving itself or caregivers’ locations, particularly if they live in rural areas [23]. This was consistent with the findings of Bateman and colleagues, as caregivers in their study reported insufficient access to in-person support [19]. The participants experienced difficulty in leaving their homes due to their caregiving role that led to less access to social or emotional support from friends and family. As a result, their network of immediately available supporters shrank drastically and, consequently, participants resorted to seeking support online.

McKechnie and colleagues added benefits to caregivers that are unique to internet-based support: the honesty enabled by anonymity, flexibility, and continuity of access [33]. Similarly, Darcy and colleagues argued that online forums enable the intimate self-disclosure needed to form online friendships [23]. They also proposed that sharing experiences in online forums can provide hope to others and increase shared identity. In the same vein, Barbabella et al. reported that caregivers found their internet-based intervention, which comprised a web platform that provided information resources and interactive services areas to informal caregivers, to be a safe environment in which to share personal experiences [18]. Caregivers in Anderson et al.’s study also asserted that the social support they received was not bound by geography; they were able to connect with other caregivers regardless of their location and offer support through blogs, an internet-based digital tool [17]. Ultimately, the reviewed articles found that current support resources have significant limitations because they are often available only in person. Researchers suggest that interventions to support informal caregivers through internet-based methods are effective in addressing those limitations by offering flexibility and access to support in caregivers’ homes. However, four studies reported certain technical challenges that existed in internet-based interventions for caregivers [18, 20, 32, 35]. For instance, Barbabella and colleagues found that some participants mentioned technical or usability issues as a reason for limiting their use of some of the available interactive services [18]. Similarly, some family caregivers in Blusi and colleagues’ study experienced technical problems in the beginning but was able to overcome those problems in a quick manner by obtaining technical support from nurses [20]. The researchers highlighted that technical support and follow ups were important to ensure the success of the internet-based intervention [20]. Furthermore, in their internet-based intervention, Marziali and Garcia also indicated that some caregivers experienced problems with accessing the video conferencing software, which was resolved with the help of technicians. Lastly, some participants in Stephen et al.’s study described sometimes experiencing “technology glitches” when accessing an online support program. While these researchers found that participants experienced technical challenges, they were often resolved with the support of technicians and healthcare professionals in a timely manner.