This study aimed to understand and describe the views of family members and direct support staff regarding the use of Facebook by persons with intellectual disability (ID) within the context of social capital. In-depth, semistructured interviews conducted with 16 family members and direct support staff of persons with ID who use Facebook revealed that most participants favored Facebook use by persons with ID for bonding and bridging social capital and for normalization. Most participants noted the empowering effect of online activity on persons with ID, yet some reported risks and usage difficulties. Although Facebook use enhances the well-being of persons with ID, findings highlighted the participants' need for formal guidelines regarding social media best-practices for people with ID.
Participation in social networking sites (SNSs) can leverage the individual's social capital and contribute to his or her psychological well-being (Mauri, Cipresso, Balgera, Villamira, & Riva, 2011; Steinfield, Ellison, & Lampe, 2008; Wilson, Gosling, & Graham, 2012). Persons with intellectual disability (ID) who are often subject to public stigma and have limited social networks in the real world (Verdonschot, de Witte, Reichrath, Buntinx, & Curfs, 2009) could also benefit from participation in online social applications, including SNSs. Scholars have recently begun to explore the social capital benefits of participation in SNSs for persons with disabilities (Bradley & Poppen, 2003; Leimeister, Schweizer, Leimeister, & Krcmar, 2008; Shpigelman & Gill, 2014a). These studies indicated that the use of the technology was beneficial, as it provided members of this population group with a means to expand their communication channels and social circles (leveraging their social capital), thus decreasing their sense of loneliness, enhancing their sense of belonging and independence, and improving their overall quality of life. However, these studies have focused on persons with physical disabilities. Very few studies (Davies et al., 2015; Holmes & O'Loughlin, 2014; McClimens & Gordon, 2009; Shpigelman & Gill, 2014b) have explored the phenomenon of participation of persons with ID in social media. The few studies (Davies et al., 2015; Holmes & O'Loughlin, 2014; McClimens & Gordon 2009; Shpigelman & Gill, 2014b) investigating the phenomenon of participation of persons with ID in social media have focused on describing people's experiences; that is, the emphasis of prior studies has been on describing how people with ID behave and feel on SNSs. The present study focused on the perspectives of family members and direct support staff (DSS) of persons with ID regarding Facebook use by persons with ID, with the specific intent of gaining a better understanding of how they perceive the social capital benefits associated with Facebook use by this population. The present study focuses on Facebook as the most popular SNS (Duggan, 2015).
Social Capital on SNSs
The concept of social capital has been formulated in social, political, and economic sciences and has been implemented mainly in organizational studies (Patulny & Haase Svendsen, 2007). Social capital refers to the resources (financial, social, or emotional) that become available to the individual through one's social interactions (Lin, 2001). Social capital is inherent to social networks and is determined by one's location within its structures (Burt, 2005). Putnam (2000), who focused on civic participation and institutional performance, discerned two basic forms of social capital: (a) Bonding social capital—benefits from close personal relationships, such as emotional or instrumental support, and (b) Bridging social capital or what Granovetter (1983) calls “weak ties”—relationships that are formed with casual acquaintances, people with whom one communicates on a daily, weekly, or monthly basis (e.g., neighbors and service providers), without forming an intimate bond. Although bridging social capital consists of open networks that are “outward looking and encompass people across diverse social cleavages,” bonding social capital consists of networks that are “inward looking and tend to reinforce exclusive identities and homogeneous groups” (Putnam, 2000, p. 22). According to Putnam, the sources of social capital, which can lead to mutual benefits, lie in networks, norms, and social trust.
The concept of social capital was previously applied to research on social media (de Zúñiga, Jung, & Valenzuela, 2012; Ellison, Steinfield, & Lampe, 2010). Studies that explored SNS use in the general population found that participation in SNSs contributed primarily to bonding social capital, meaning that users were more likely to communicate with close friends (Duggan, 2015; Nadkarni & Hofmann, 2012). However, bridging relationships that can evolve from or be maintained through SNSs may be more beneficial for persons with ID, who have limited social networks in the real world (Verdonschot et al., 2009).
Online Participation of Persons With ID
Previous studies suggest that marginalized groups, which are isolated or stigmatized, such as people with disabilities, might be especially motivated to participate in and gain from online social interactions (Leimeister et al., 2008; Shpigelman & Gill, 2014a). Nevertheless, very few social media studies have included individuals with ID (Davies et al., 2015; Holmes & O'Loughlin 2014; McClimens & Gordon 2009; Shpigelman & Gill, 2014b). The findings of these emphasized that participation in online social applications for persons with ID is doable and can be beneficial, mainly in terms of social capital and well-being. To date, persons with ID are still underrepresented in social media research. Studies have suggested that the major barrier to Internet use by persons with ID is the absence of training and ongoing support from family members and DSS (Chadwick, Wesson, & Fullwood, 2013).
Further research is needed to hear the voices of the family members and their DSS regarding the use of the Internet by persons with ID and to understand the type of support they provide. Furthermore, most of the existing studies focused on Internet use in terms of e-mail correspondence and information search (Vicente & López, 2010), but did not take into account online social applications such as SNSs, which can contribute to the individual's social capital and well-being. It is important to understand the role of family members and DSS in facilitating the use of SNSs by persons with ID. The present study aimed to understand and describe the point of view of family members and DSS regarding Facebook use by persons with ID, with the specific intent of gaining a better understanding of how they perceive the social capital benefits associated with Facebook use by this population. Putnam's concept of social capital (2000), and specifically the two forms of social capital (bonding and bridging), will be used to analyze the data and discuss the findings. Understanding the point of view of family members and DSS is crucial for promoting the participation of persons with ID in social media, as a complementary venue for social life and a sense of community belonging, which in turn may contribute to enhanced social capital and the well-being of this population (Bargh & McKenna, 2004).
Participants in the study had to meet the following criteria: (a) be a family member or a member of the direct support staff (DSS) of a person with ID who resides in the community and actively uses Facebook (at least once a week), (b) be 18 years of age or older, and (c) be either directly (i.e., helping and guiding the person with ID on how to use Facebook) or indirectly (as a Facebook friend tracking the online activity from a distance) involved in the Facebook activity of the person with ID.
Recruitment flyers were distributed both face-to-face and online (mailing lists, websites, Facebook pages), through organizations and centers that provide services for persons with ID. The sample included a total of 16 individuals; eight were relatives (e.g., a parent or a sibling) of the person with ID, from middle-class Jewish families. Six of these eight interviewees had an academic degree and a job. Of the eight individuals with ID whose relatives were interviewed, six lived with their nuclear families and two lived independently in an apartment. The eight remaining interviewees were direct staff members (affiliated with a total of 12 people with ID) employed in community-based living arrangements (e.g., group homes, supervised apartments, or hostels) in several locations throughout the author's country. Some living arrangements provide a comprehensive service of housing, physical care, employment options, and leisure activities, for people with developmental disabilities. Other arrangements provide housing, while the residents are employed in different supportive settings in the community. In general, the DSS in these arrangements applies an inclusive and supportive approach that addresses the needs of the residents and promotes their independence and social inclusion.
Nine of the 16 participants were women, and the average age was 36.1 years (SD = 10.1). All participants were involved in interacting with and supporting the individuals with ID (a total of 20 individuals) on a regular basis in some way. All participants reported that they were accustomed to using the Internet on a daily basis, and 12 of the 16 also reported that they have a Facebook account and are active users.
Of the 20 individuals with ID, five had an additional diagnosis of cerebral palsy, vision impairment, or autism spectrum disorder (ASD). However, the diagnostic information mentioned herein reflects only what was reported by the participants. There was no attempt to verify information through additional assessment or a review of formal records, due to the issue of confidentiality. Furthermore, 14 of the 20 individuals with ID had a personal computer and Internet connection.
Data Collection and Analysis
A phenomenological-constructivist paradigm was applied to understand and describe participants' perceptions of and the meaning they attributed to the Facebook-related experiences of persons with ID (Niesz, Koch, & Rumrill, 2008). Over a three-month period, in-depth semistructured interviews were conducted individually by a research assistant in a face-to-face setting chosen by each participant; each interview lasted, on average, slightly over an hour. Both key and probing questions were used to elicit information about usage patterns of the person with ID, the participant's role, and how the participant perceived Facebook use by this population (see Appendix). Interviews were audio-recorded and transcribed verbatim.
The participants' perceptions were analyzed while applying Putnam's social capital approach (2000). The interview transcripts were organized into major themes and subthemes by the investigator (the author) in collaboration with a research assistant, using a three-phase content analysis procedure (Patton, 2002). In the first phase of the analysis, the investigator divided the transcripts into meaningful chunks and coded them, by assigning a brief descriptor. In the second phase of data analysis, the investigator eliminated redundant codes, and then arranged the data into themes, to facilitate analysis of important thematic interrelationships. As the analysis proceeded, the research assistant audited the investigator's analysis, checking the data to determine relationships between thematic categories. Conflicting feedback was resolved through discussions (between the investigator and the research assistant) until a consensus was reached. This process resulted in a stronger definition and a more coherent organization of themes and subthemes. To minimize bias and enhance trustworthiness (Lincoln & Guba, 1985), the interview memos, including the participants' comments and body language, the settings, and the interviewer‘s self-reflections were documented. Both the investigator and the research assistant analyzed the data and reviewed a draft of the findings (themes and subthemes).
The protocol used for this study was approved by the Ethics Committee of the Faculty of Social Welfare and Health Sciences at the University of Haifa, Israel. The participants indicated their willingness to participate in the study voluntarily, by reviewing and signing an informed consent form. Finally, personal identifiers were eliminated from the results to ensure confidentiality.
The participants reported that, in terms of their own experience, they used the Internet daily, primarily for work purposes and e-mails, but also as a means of obtaining information and entertainment. Regarding their use of Facebook in particular, 13 of the 16 participants reported using it frequently (once a day), mainly during their leisure time, to maintain social relationships, which involved getting updates about others as well as uploading and sharing photos and information. Three participants reported that they did not have a Facebook account; these included two family members (one parent and one sibling) and a social coordinator in a community-based-living facility. Qualitative content analysis of the interview transcripts revealed four major themes, including subthemes, as described in the following sections.
Facebook Is Normalizing
Twelve of the 16 participants supported Facebook use by the person with ID (whether a family member or clients). They perceived Facebook as a means for integrating the person with ID into society, as described by a sibling of a 27-year-old man with ID: “He asked to join Facebook and I thought it would be cool. [On Facebook] he feels like 'one of the guys.' The purpose was to feel as 'normal' as others and Facebook helped to address this purpose.” A father of a 21-year-old woman with ID adopted his daughter's view and described her use of Facebook as an opportunity for her to engage in social interactions unencumbered by the disability: “She wanted to be like everyone else and part of it was using Facebook, and I wanted to let her feel like a 'normal' teenager, as much as possible.”
Leveraging Social Capital
The participants perceived Facebook as a supplemental channel of communication, which helps persons with ID to maintain face-to-face relationships. A father of a 21-year-old woman with ID said: “She communicates with the residents and they share information—this is great in my opinion. She manages to keep in touch with friends who don't live with her, which is another bonus.” Other participants also emphasized the opportunity to expand horizons and to share mutual interests via Facebook groups, as noted by a mother of a 26-year-old man with ID: “I think it [Facebook] is fantastic. He knows a lot of people who share the same interests, like football, and this is amazing."
Feeling Good on Facebook
The participants reported that the participation in Facebook-based interactions contributed to their family member or client's psychological well-being: “This is a good opportunity for her to get compliments for things she posts and shares on Facebook. It makes her feel proud of herself.” A father of a 21-year-old woman with ID described a situation in which the daughter's employer creatively encouraged her use of Facebook, to empower her: “The kindergarten teacher asked her to be in charge of the professional Facebook profile. She was very happy, because the teacher counted on her. I bless [the teacher] for this initiative.”
The Negative Aspects of Facebook Use for People With ID
The participants (6 of 16) who did not fully support Facebook use by their family member or client expressed concerns related to issues of privacy, security, and addiction. A social support worker of a 28-year-old woman with ID said: “She knows how to beware of strangers on the street, but she doesn't view her Facebook friends as strangers, so she might give them her phone number.” One of the participants, a social worker, said:
This is like letting a little kid use Facebook. You don't know who their friends are, what photos they receive or upload, what they tell about themselves. It is scary to think that someone might take advantage of this situation.
Another social support worker who did not support Facebook use by her client perceived this activity as a waste of time:
It [Facebook] is bad—an illusion. Instead of making new friends, she is stuck on watching photos of past events. It is a waste of time. She could be doing sports, improving her reading skills—doing things that could be beneficial for her.
Although some of the participants perceived Facebook use by persons with ID as risky, others believed that the risks in the virtual world are the same as the risks in the real-world, as noted by a social worker:
The risks on the Internet are like [the risks when] going to work or going out to the theater in the evening, because conceptually, these people [with ID] don't understand the meaning of risk and don't know how to say “no”; they mainly look for social relationships and warmth.
Barriers to Facebook Use by Persons With ID
The participants reported two main types of difficulties that they had observed among persons with ID using Facebook: lack of skills and access barriers—as described next.
Lack of skills
The participants distinguished between the lack of conceptual and social skills and the lack of literacy skills, both of which are linked to the cognitive impairment and render Facebook use difficult for persons with ID. Some of the participants reported that their family member or client had limited conceptual and social skills, which could lead to unsafe use: “In general, this population can become addicted to the computer and the Internet; they can sit for hours [in front of the computer] and do nothing but play games”; “She has no limits; she can sit for one or two hours and look at photos or review the main page again and again, checking for new posts”; “She doesn't quite understand the meaning of friendship [on Facebook]. What bothers me is that she collects friends, even strangers, because she wants many friends; [she collects friends] like you would collect stickers.” The participants mainly referred to the difficulty that persons with ID have in understanding Facebook norms, which could lead to unsafe use, as in divulging confidential personal information, thus exposing them to potential risks or harassment.
The participants also referred to the lack of literacy skills of their family member or client, which limited the access of persons with ID to communication functions, more specifically, they refrained from posting messages or chatting on Facebook: “He doesn't like to write a lot and his typing is very slow. I assume he knows about the chat function and he does reply to messages that he gets, but he doesn't initiate an online chat”; “She writes short posts; she mainly uploads photos and then writes the place where each photo was taken.” Accordingly, they reported that their family member or client used mainly visual-based functions, such as watching, uploading, and sharing video clips and photos.
Some of the participants viewed certain Facebook features as technical barriers that prevent equal participation on Facebook. Specifically, they noted that text-based communication on Facebook requires relatively high-level literacy skills, and the somewhat complex design of its user interface relies on abstract language and, hence, can be conceptually difficult for individuals with ID. Consequently, participants perceived that Facebook was more accessible to people with ID with relatively higher levels of intellectual functioning, compared to people with relatively lower levels: “For people like X, who can read and write and have a high level of understanding, Facebook it is quite accessible. I don't know how people on the lower range manage it”; “For some users, especially those who have lower level reading skills, this is not a simple task—I am not sure they can use Facebook”; “She had difficulty with the English. She doesn't know English well and many people are registered in English.”
The Right to Online Privacy Versus Monitoring
Despite the usage difficulties and potential risks described above, 11 of the 16 participants reported that they did not monitor the Facebook activity of their family member or client. The participants, mainly family members, guided the persons with ID on how to use Facebook only at the beginning, when they first joined the platform as users. Besides this basic guidance, they perceived Facebook use as a private activity, counted on the common sense of their family member or client, leaving them to use Facebook independently. “Our parents are not into it. They don't monitor his online activity. When he encounters a technical problem, he calls me [his brother]”; “Residents who can read and write contact the Internet provider and use Facebook independently. The social workers are not involved; there is no monitoring.” One of the participants, a mother of a 26-year-old man with ID, described her perspective thus:
I don't believe in tight monitoring. I want him to be independent and I trust him. We are not hysterical persons who see [danger lurking] in every corner. We rely on his common sense. The only thing we [parents] have asked him to do is to let us know when he gets a friendship request from a stranger, and it happened only at the beginning, when he'd just opened the account. He doesn't live in a bubble—he hangs out, surfs the Internet; he has a girlfriend. I don't want him to live in a bubble. I know that if he encounters something unusual, he'll tell us and then we'll deal with it.
In contrast, a few participants (5 of 16), mainly family members, reported that due to the potential risks associated with Facebook use, they do in fact monitor the individual's Facebook activity, but indirectly, for example, through Facebook friendship: “Since I'm his friend on Facebook, I see what he is doing. I think this is great, because I can get information about his [face-to-face] activities and whether he enjoys them or not.” Most members of the DSS reported that they obtained information about their clients' online activity during face-to-face discussions: “At the end, I always get the updated information. There is a gossip network among the residents. If someone goes on a secret date, I will know about it one way or another. Everyone knows everything about everybody's business”; “A few times I visited her in the apartment when she was on Facebook, so she told me what she was doing.”
A few members of the DSS reported that they directly monitor their client's online activity: “Here, in the hostel, there is no privacy. When she is working on the computer, I can come in, sit next to her, and watch her activity, and it doesn't bother her.” Another social tutor explicitly said that she was trying to moderate her client's online activity: “I am trying to moderate the time she spends on the Internet, for example, by limiting her use to no more than one hour. Sometimes it works and sometimes it doesn't.”
It should be noted that the family members expected that the DSS members or the school teachers would monitor Facebook use: “In schools and organizations for persons with ID, they learn a lot about how to protect themselves online.” At the same time, the DSS did not view it as part of their role; they expected the family members to monitor the client's Facebook use: “I am sure that the family members monitor this activity, especially when they are Facebook friends of the residents, and can watch in real time what they are doing.” This gap in expectations created a situation whereby the individuals with ID who used Facebook had no one (specific person) to turn to for ongoing support. In this sense, the interview questions led some of the DSS members to re-think their role in this regard: “I am wondering if I should be more involved, monitor more.”
Making Facebook More Accessible for Persons With ID
The participants discussed two types of coping strategies: one they had already implemented and the second type included future strategies.
The participants, mainly the family members, simplified Facebook language in a way that enabled its safe and fruitful use: “I explained to him that [clicking on] the like icon means that he likes it very much; this is the way to show that you like it, instead of explicitly saying so in writing.” One of the participants, a mother of a 26-year-old man with ID, described the strategy thus:
His sister told him that chat is like writing a personal letter sent by snail mail and only the person who receives the letter can read it, and when you write on someone's wall, it is like posting a message on a bulletin board in a grocery store.
The participants, especially the DSS, said that they would benefit from specialized training, focusing on how to help clients (persons with ID) use Facebook and how to guide or monitor their use of the Facebook platform: “I think that training for the professionals and social support workers is needed, especially on how to set the limits—what the residents should disclose and what they should not, and how to refer to strangers [on Facebook]”; “There is no clear instruction for us [professionals] regarding Facebook use [by the residents].” Others asked for practical solutions that would enable them to partially monitor the online activity of persons with ID, such as an automatic alert when the person may be at risk: “I would happy if I could get an alert when she uploads an intimate photo or curses online, but that would be too much like the 'Big Brother' phenomenon, so I was a bit hesitant to make this suggestion.”
Some participants asked for training, not only for them, but also for the Facebook users (persons with ID): “A group conversation with the residents about Facebook is needed”; “This research led to a discussion about Facebook and some residents asked for training. It is important to learn about their needs and instruct them accordingly”; “Good training can lead them [persons with ID] to use Facebook appropriately—to ensure a positive outcome, but I don't know how to do that.”
Other participants had practical recommendations on how to make Facebook more accessible for persons with ID, such as by developing a simplified version of Facebook or adding voice- or text-based instructions that would explain the various functions in plain language: “It is important to have an online explanation of the like or share functions, through a text or a voice program, like a text box that would open when you scroll over this function with the mouse “; “It [Facebook] feels like an overload of stimuli. I think it should be much 'cleaner' so it will be accessible for persons with relatively lower levels of intellectual functioning.”
The present study aimed to understand and describe the perceptions of family members and DSS regarding Facebook use by persons with ID and the potential social capital benefits that persons with ID stand to gain from Facebook use. The findings indicated that the majority of the participants supported the use of Facebook by persons with ID; they perceived this online platform as a means to integrate persons with ID into society and to help them feel like members of mainstream society. This goal of normalization, according to its traditional conceptualization (Davis, 2013), was also reported by Facebook users with ID in an earlier study (Shpigelman & Gill, 2014b). It seems that the participants in the present study perceived Facebook as an online environment that can contribute to people with ID in terms of increasing their social participation and leveraging their bridging social capital (Putnam, 2000). This perception contrasts with findings of previous studies, which have indicated that Facebook participation mostly contributes to bonding social capital (Nadkarni & Hofmann, 2012; Shpigelman & Gill, 2014a, 2014b).
Given the participants' perception that Facebook participation can leverage the bridging social capital of people with ID, they viewed Facebook as providing an opportunity for people with ID to experience a normal identity in an unprejudiced and nonstigmatizing environment. This perception demonstrates the “flattening effect” of social media applications, (i.e., the blending and melding together of different social circles in the online environment; Lewis & West, 2009), which may help persons with ID leverage their social capital, thus creating a beneficial effect and enhancing their sense of well-being. This finding also raises the issue of identity. As opposed to users without disabilities, who regularly report constructing numerous and varied identities in online settings such as SNSs or dating websites (Yurchisin, Watchravesringkan, & McCabe, 2005; Zhao, Grasmuck, & Martin, 2008), it seems that the participants in the present study did not perceive the online environment as a platform that enables production of new identities for persons with ID. The participants, especially the family members, wished that Facebook participation would help their relatives with ID to become part of the general (mainstream) society. The family members' wish might be explained by the complex process of family adjustment to disability, which includes different reactions, ranging from denial to acceptance (Mohamed & Abd El-Aziz, 2011; Thompson, Hiebert-Murphy, & Trute, 2012).
Despite the participants' wish that the use of Facebook would leverage the bridging social capital of their relatives or clients with ID, they reported that the persons with ID did not use Facebook to leverage their bridging social capital by making new friends. However, participants believed that the use of Facebook by the person with ID, which included both online interactions with face-to-face friends and the sharing of mutual interests with others through Facebook groups, had an empowering effect on the persons with ID, and led to an increased sense of self-esteem. Participants perceived Facebook as a social platform that enabled these persons with ID to leverage their bonding social capital, by extending existing face-to-face relationships to the online environment, as Facebook users typically do (Duggan, 2015; Nadkarni & Hofmann, 2012). This finding provides further support to those of previous studies, which indicate that participation in SNSs contributes to bonding social capital (Duggan, 2015; Nadkarni & Hofmann, 2012; Shpigelman & Gill, 2014a, 2014b) as well as to psychological well-being and personal empowerment (Holmes & O'Loughlin, 2012; Steinfield et al., 2008).
Nevertheless, there were some participants who did not support Facebook use by persons with ID, due to the perception that this online environment could be risky for this population. As found regarding users without disabilities (Debatin, Lovejoy, Horn, & Hughes, 2009; Taraszow, Aristodemou, Shitta, Laouris, & Arsoy, 2010), also persons with ID can publicly divulge confidential personal information and contact strangers. However, persons with ID whose cognitive impairment is associated with difficulties related to conceptual and social skills (Schalock et al., 2010) could be considered more vulnerable and more exposed to risk on SNSs than are users without disabilities. The difficulties of users with disabilities to understand social cues in the real-world (Thirion-Marissiaux & Nader-Gosbois, 2008) may have implications in the virtual world; as a result, users with disabilities are liable to be more vulnerable to the potential risks of the online environment. Although the participants reported that some of the persons with ID who were under their care had already internalized real-world social norms, such as avoiding communication with strangers, the fact that online communication is based on abstract notions (e.g., Facebook friend, wall, share, tag)—more so than verbal language used in face-to-face communication—suggests that its use is inherently more risky for individuals with ID (Wehmeyer, Smith, Palmer, & Davis, 2004).
The findings of the present study emphasize that to promote and ensure the beneficial use of social media by people with ID, there is a need to gain a clear understanding of their family members' approach to the issue. A recent study (Newman, Browne-Yung, Raghavendra, Wood, & Grace, 2016) indicated that parents of a child with a physical disability or an acquired brain injury who were not Internet-savvy were also not aware of the social benefits associated with Internet use and did not encourage their child with a disability to engage in online activities. The researchers concluded that the parents' cultural digital capital is a valuable factor that shapes the tastes and attitudes of children with disabilities.
In addition to the weaker social skills, which pose a risk, the participants reported access barriers that limit Facebook use, especially in the case of persons who had relatively low cognitive abilities. These barriers include text-based communication, which requires relatively high-level literacy skills, as well as the relatively complex design of user interface and the reliance on abstract language, as mentioned. These barriers have been demonstrated also in previous studies (Fox, 2011; Haller, 2010; Newman et al., 2016).
An interesting finding was that despite the previously mentioned barriers and risks that might jeopardize the safety of persons with ID using Facebook, most participants reported that they typically did not monitor their family member's or client's use of Facebook. They viewed Facebook use as a private activity and they wanted the persons with ID to be able to experience Facebook as others do (without restrictions). This concept represents the voice of disability-right movements throughout the world, which view persons with disabilities as human beings who are entitled to equal rights in society, acknowledging their authority to frame their own experience (Oliver, 1996). It is also in line with Article 22 of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006), which emphasizes the right to privacy of any person with a disability. To date, research on the right to privacy of people with ID has focused on issues of sexuality and reproduction (McGuire & Bayley, 2011). The findings of the present study emphasize that persons with ID have a right to privacy also in online environments such as SNSs.
Although the majority of the participants prioritized the online privacy of persons with ID over the possibility of intervening and monitoring their online activities, there were participants (mainly family members) who called for indirect monitoring of their family member's Facebook use, for instance by friending this person via the Facebook platform. This strategy is also common among parents who monitor the Facebook activity of young children without disabilities (Kanter, Afifi, & Robbins, 2012). This finding highlights two opposing approaches regarding social media use by persons with ID: one approach seeks to protect their right to online privacy, which is perceived as no different from their right to privacy in the real-world environment (i.e., face-to-face settings), whereas the other approach prioritizes safety over privacy and seeks to engage in remote monitoring, in view of the heightened risk that Facebook use poses for people with ID.
It should be noted that the participants held different expectations regarding the responsibility and desired policy for Facebook monitoring. As the findings of Newman et al. (2016) suggested, the family members in the present study who were familiar with Internet and Facebook use encouraged its use by relatives with disabilities; however, they expected the DSS to monitor the use of Facebook by the persons with ID. At the same time, the DSS members did not view overseeing and monitoring Facebook use as part of their role, and expected that the family members would do that. This gap led to the absence of an explicit monitoring system. It also suggests that the ongoing support offered to these people with ID might not have been as comprehensive as the circumstances required.
To cope with the usage difficulties of persons with ID, some of the participants, especially family members who provided basic guidance, simplified Facebook language (terms and functions). Using plain language has been found in the literature as an effective strategy for giving persons with ID greater access to complex information (Moloney, 2012). In contrast to the family members, who focused on language simplification, it seems that the DSS members did not have a specific policy by which to facilitate Facebook use for their clients (persons with ID). The present study led the DSS to re-think this situation. Accordingly, they asked to participate in future training, so as to learn how to facilitate Facebook use for their clients (person with ID) and how to support it in the long term. They also recommended developing training for the clients directly. This finding supports those of previous studies, which have indicated that ongoing support is vital for continued and safe Facebook use by persons with ID (Haller, 2010). Other participants recommended developing a simplified version of Facebook or integrating voice-control programs into Facebook, as suggested also in previous studies (Shpigelman & Gill, 2014b; Sillanpää, Älli, & Övermark, 2010). Recently, a cognitively accessible prototype interface called Endeavor Connect was developed to support independent Facebook use by people with ID. The interface retrieves information from Facebook (and delivers it back) and displays it in a format accessible to people with ID. A pilot test of the Endeavor Connect interface suggests that a specially designed, cognitively accessible interface to Facebook provides an effective means to support greater access to the SNS for people with ID (Davies et al., 2015).
The findings of the present study demonstrate the potential of Facebook use for social capital and empowerment of persons with ID. However, to ensure that persons with ID enjoy the full potential and projected beneficial effects of online social applications without compromising their privacy and security, a profound and comprehensive understanding of the online needs of this population is required. The current study provided additional insights regarding these needs. An important aspect is the need for an explicit policy regarding the extent to which family members and DSS should monitor (or not) the online participation of persons with ID. Furthermore, DSS should coordinate expectations with their clients (persons with ID) and with the clients' family members. Community rehabilitation and educational services should also develop explicit policies and guidelines regarding the optimal ways to introduce Facebook to their clients and to support their clients' use of the platform over the long term. Such developments are still needed. Taking these important steps would enable persons with ID to derive the full potential for building social capital that is inherent in social media.
DeLambo, Homa, Peters, DeLambo, and Chandras (2012) presented a framework for incorporating the topic of Facebook use in the counseling process. Although their aim was to understand the behavioral functions of Facebook use (e.g., attention, avoidance/escape, and sensory reinforcement) so as to develop face-to-face interventions within a therapeutic context with college students, their interventional approach may be relevant for use in socioemotional contexts among other populations, such as persons with ID. Thus, for example, if an individual with ID posts a risqué personal photo on his/her Facebook profile in order to gain attention from others, the DSS members can intervene, by discussing the incident—whether in a personal or a group setting, so as to clarify the ramifications of posting such a photo and suggest more positive ways by which to gain attention. In this manner, a structured support system can promote the use of social media applications for expanding the social circles of persons with ID, while monitoring its use and ensuring the safety of this population.
Limitations and Future Research
The present study was based on a small number of participants in one country. Future research completed in other communities will provide greater insight, indicating whether the findings of the current study should be considered culturally specific or may be representative of more universal experiences of people with ID and their families.
In light of the finding that the community-based living facilities included in the current study lacked a predefined policy regarding Facebook use by people with ID and the resulting question of DSS members' responsibility to facilitate their clients' use of Facebook, future research should also present the voices of the managers of these frameworks, and explore existing policies regarding Facebook use from the management's perspective. This will expose similarities and gaps in perceptions and practices regarding the use of Facebook by persons with ID in community-based arrangements. It may also promote the development of training programs for DSS members on how to support Facebook use of residents with ID in the long term, as they have asked for in the present study interview. Future research should also directly ask people with ID about their social media experiences, in order to learn about their perceptions and needs.
Interview Guide (Sample Questions)
Please present yourself (name, age, education, family status, etc.).
Do you use the Internet? How often?
Do you use Facebook? How often?
Tell me about X (the individual with ID) and your relationship.
What is his/her diagnosis?
Where does he/she live? Do you live together?
Does he/she have a personal computer with Internet connection?
How often does he/she use the computer/Internet?
What does he/she like to do online?
Does he/she use the Internet alone or with help?
What X does in Facebook?
When did he/she join Facebook? Did you or someone else help him/her to join Facebook?
What are his/her favorite Facebook activities? For what purpose?
To what extent are you involved in his/her participation on Facebook?
Do you know his/her Facebook friends?
How many Facebook friends does he/she have?
Did he/she meet his/her Facebook friends face-to-face?
How does he/she decide to accept or decline friendship requests?
Do you know what X does with his/her Facebook friends?
In general, what do you think about Facebook use by people with ID? (Advantages vs. disadvantages)