Around the globe, people are increasingly using social media for the provision of online social support. Online social support may be especially relevant for parents who have children diagnosed with rare chronic diseases such as MECP2 Duplication Syndrome, Rett Syndrome, or Rubinstein–Taybi Syndrome. Despite increasing evidence that online social support enhances a person’s psychological well–being, there is little research that seeks to understand how and why various forms of social media facilitate online social support for caregivers. Informed by the literature on psychosocial and media theories, this study develops a theoretical framework that describes the relationship between social media use and online social support. We conclude with implications for health information systems design and research.
Prior research has shown that people benefit from social support when coping with stressful circumstances such as being diagnosed and subsequently living with chronic diseases (Baum, 2004; Friedland, et al., 1996; Lazarus and Folkman, 1984; Overberg, et al., 2010; Thoits, 1986; 1995). These circumstances are more pronounced when parents and caregivers of children are faced with the initial diagnosis of rare chronic diseases such as MECP2 Duplication Syndrome, Rett Syndrome, or Rubinstein–Taybi Syndrome.
The initial diagnosis of a rare chronic disease can best be described as a crisis situation that is incomprehensible. In this situation, three conditions exacerbate the severity of stress and uncertainty: (1) lack of publicly available information regarding the disease; (2) lack of access to others in local communities who face the same or similar circumstance; and, (3) lack of access to a medical community with expertise in treating the disease (Lee, et al., 2010; Sarasohn–Kahn, 2008). In order to address these challenges, patients and caregivers are increasingly using Health 2.0 technologies.
Health 2.0 is defined as “the use of social software and its ability to promote collaboration between patients, their caregivers, medical professionals, and other stakeholders in health” . Despite theoretical evidence that continues to support the efficacy of social support (Schwarzer and Knoll, 2007), we know very little about the various characteristics of social media that influence online social support, and which ones may be more effective at providing online social support. Therefore, the purpose of this research is to draw on existing psychosocial and media theories in order to explain how various forms of social media may be more effective at facilitating online social support.
This research contributes to the information sciences discourse in two ways. First, this study focuses specifically on the beneficial consequences of online social support for the caregiver rather than the patient. Caregivers face several unique challenges that make participation in face–to–face support groups untenable. These challenges include lack of substitute caregivers, inconvenient meeting times and locations, and transportation problems. Second, we develop a theoretical framework that can be used to inform the design and evaluation of user–centered health information systems in global contexts.
Although social support is the most widely studied psychosocial resource, the concept has been defined and articulated in a variety of different ways. For instance, Cobb (1976) defined social support as “information leading the subject to believe that he is cared for and loved, esteemed, and a member of a network of mutual obligations” . For House (1981), social support involves “the flow between people of emotional concern, instrumental aid, information, and/or appraisal between people” . Other definitions of social support include a resource provided by others, coping assistance, or an exchange of resources (Schwarzer and Knoll, 2007). As a result of the lack of an agreed–upon definition, social support has been confused with social networks, social integration or isolation, and social relationships (House, et al., 1988).
To further complicate matters, three perspectives dominate the discourse on social support: (1) stress and coping; (2) social constructivist; and, (3) relationship perspectives (Lakey and Cohen, 2000). Of the three perspectives, stress and coping is most frequently emphasized. The stress and coping perspective hypothesizes that social support buffers the adverse effects of stressful life events on health through supportive actions (e.g., advice, reassurance, etc.) of others, as long as the type of supportive assistance matches the severity of the stressor.
From the social constructivist perspective, social cognition and symbolic interaction provide a very different view of social support. The social constructivist perspective supports the argument that social support influences well–being by promoting identity and self–esteem. Finally, the relationship perspective supports the argument that companionship, intimacy, and low conflict are the components of social support that influence well–being.
While various definitions and perspectives of social support abound, scholars do agree that social support can be conceptually distinguished along two dimensions: functional and structural. Functional social support generally refers to the type of assistance provided to a distressed person by significant or similar others. Table 1 describes the three primary types of functional social support that have been proffered in the literature: instrumental, socioemotional, and informational (Cobb, 1976; House, 1981; Thoits, 1986).
Table 1: Functional social support. Function Definition Supportive action Instrumental aid Material aid or behavioral assistance provided by others that enable the fulfillment of ordinary role–responsibilities. Providing financial support to a caregiver who lost his or her job due to the responsibilities of caring for a dependent child. Socioemotional aid Assertions or demonstrations of love, caring, esteem, sympathy, and group belonging. Compassion provided to a caregiver by a person facing the same or similar circumstance. Informational aid Communications of opinion or fact relevant to current difficulties, such as advice, personal feedback, and information that may provide a solution to a problem. Providing relevant information on treatment options to a caregiver related to the specific chronic condition.
The structural dimension, which is similar to the relationship perspective, focuses on the structural configuration and properties of social support networks. Structural social support consists of the structure of the person’s network, supportiveness of network ties, and the social resources that are presumed to flow through the network (Mueller, 1980; Tolsdorf, 1976). The characteristics of the networks include size of the person’s social network, social density, frequency of contact, directionality, and geographical distance (see Table 2). Although functional and structural social support can be conceptually distinguished, the general view is that both types of social support have positive implications for an individual’s psychological well–being.
Table 2: Social network characteristics. Characteristic Definition Size The number of people in the person’s social network. Social density Proportion of theoretically possible network links that exist. Frequency Frequency of contact with the network members. Directionality Proportion of reciprocal network links. Geographical distance Geographical distance of the focal individual from network members.
In this section, we develop a framework that describes the relationship among various forms of social media use and online social support (see Figure 1). Our theoretical argument is based on the premise that the differences in the severity of the stressor (i.e., chronic condition) represent different information needs and requirements. Therefore, specific types of media are more likely to satisfy these requirements than other social media based on the richness of information they provide and the level of social presence they afford. Thus, depending on the severity of the stressor, caregivers are more likely to benefit more from specific social media platforms than from others.
Figure 1: Social media and social support.
A classification of disease type and severity has eluded medical professionals for decades (Katz, et al., 1969). Katz, et al. (1969) identified three categories of chronic diseases based on variations in the disease patterns: most severe, moderately severe, and least severe. For example, a person with mild stable diabetes in the early stages may be categorized as the least severe, whereas a person with progressive diabetes may be classified as moderately severe. The most severe end of the spectrum represents a person experiencing renal failure and cardiac complications.
Patients rated most severe require special assistance from others for daily activities such as bathing, dressing, eating, and toileting. It is worthwhile noting that Katz, et al.’s (1969) indicators of severity were based on actual screenings and disability evaluations. In this study, we use stressor severity as a proxy for the severity of the chronic disease. Stressor severity, therefore, is defined as the extent to which a chronic diagnosis leads to increased levels of psychosocial distress.
Patients and caregivers who receive diagnosis of rare, chronic diseases experience high levels of psychological distress. This is due to poor prognosis, lack of a known cure, and the high degree of uncertainty regarding treatment options. We define rare chronic diseases as life–threatening debilitating diseases that only affect a small percentage of the population.
Information needs and requirements
The severity of the stressor represents different information needs and requirements. Two requirements are the reduction of uncertainty and the resolution of equivocality. Uncertainty means the absence of information (Daft and Lengel, 1986; Daft, et al., 1987), which is certainly the case for caregivers of children who have been diagnosed with rare chronic diseases with no known cure. However, information on common chronic diseases is readily available online. For example, the five common chronic diseases consisting of high blood pressure, lung conditions (e.g., asthma, bronchitis, emphysema), diabetes, heart conditions, and cancer are well documented (Fox and Purcell, 2010).
Equivocality is related to ambiguity and is similar to uncertainty (Daft, et al., 1987). However, equivocality suggests that new information may be confusing and even increase uncertainty (Weick, 1979). This is certainly more so the case for caregivers of children who have been diagnosed with rare chronic diseases. Often the information that is available is confusing and results in equivocal situations. Therefore, the diagnosis of a rare disease represents a situation in which uncertainty and equivocality are both high.
Characteristics of social media
According to media richness theory (Daft and Lengel, 1986), various forms of social media differ in terms of how the media supports the reduction of uncertainty and resolution of equivocality. Social media can be characterized by the information richness and social presence that it provides. Information richness is defined as the extent to which the medium is able to make issues less ambiguous (Daft and Lengel, 1986). Media richness theory posits that, as the amount of information increases, uncertainty decreases, and as the richness of information increases, equivocality is resolved.
Social presence is operationalized as the subjective quality of the communications medium (Short, et al., 1976). According to social presence theory (SPT), social media differ in the degree in which the medium allows users to experience others as being psychologically present. SPT is based on the social psychological concepts of intimacy and immediacy. Intimacy (interpersonal vs. mediated) refers to the medium’s capacity to overcome physical distance. Immediacy (synchronous vs. asynchronous) relates to the medium’s capacity to transmit information. Social media that provides higher levels of intimacy and immediacy provides a higher level of social presence. The higher the social presence, the larger the social influence that the communication partners have on each other.
Social presence is expected to be lower for mediated and asynchronous communication than interpersonal and synchronous. Likewise, synchronous social media provides immediate feedback that is especially relevant to providing high levels of online social support. Therefore, social media that is ranked high on social presence is thought to be more effective at facilitating online social support for online health consumers that are confronted with rare diseases than social media ranked low on social presence (see Figure 2).
Figure 2: Hierarchy of Health 2.0 by media richness and social presence.
Although moderate levels of information richness are effective at reducing uncertainty, a high level of information richness is necessary for resolving ambiguity. Therefore, those online health consumers who are confronted with newly diagnosed rare chronic diseases may be more likely to benefit from social media that ranks high on media richness.
Studies have shown that the use of new media is positively associated with online social support (Leung and Lee, 2005). This finding is based on the premise that social media can be ranked on the information richness that they provide and the degree of social presence they afford. The proposed classification scheme is derived from previous models of media richness and social presence (Kaplan and Haenlein, 2010). However, it differs from previous models by specifically classifying Health 2.0 platforms in the context of rare chronic diseases.
Applied to the Health 2.0 contexts, our framework posits that patients and/or caregivers who use social media that score high on information richness and social presence will experience higher levels of online social support. With respect to SPT and MRT, applications such as wikis, blogs, and online forums score lowest on social presence and media richness because they are primarily text–based and only allow for simple exchange. In addition, these media provide very little support for nonverbal and verbal cues. Wikis are more informational instead of conversational. Blogs and forums score higher than wikis because users have the ability to go back and reference, process, and filter the messages.
On the next level are content communities (e.g., video sharing and podcasts) followed by social networks. In addition to text–based communication, content communities enable the sharing of pictures, videos, personalized messages, and interactivity. However, based on verbal cues, profiles, and multi–modes of communication, we posit that health information systems that include multimodal interaction are more effective at facilitating online social support for parents and/or caregivers who are confronted with rare chronic diseases.
On the highest level are virtual social worlds that enable users to appear as avatars (e.g., Second Life, HutchWorld). These platforms are capable of providing verbal (e.g., tone) and non–verbal cues (e.g., facial expressions). Virtual social worlds have a significantly higher level of media richness and social presence as they try to replicate face–to–face interaction by enabling social interaction in a three–dimensional space. In addition, virtual social worlds help make the patient or caregiver more aware when the other is going through an emotional state.
Social support: Instrumental and expressive aid
Social support theory provides the framework for understanding the experiences of those who receive online social support. Theorists argue that social support is most effective when it comes from socially similar others who are facing the same or similar circumstances (Thoits, 1986). Situational similarity is based on empathy, which has long been considered a critical component of social support (Reynolds and Scott, 2001). Empathy is an experienced emotion, which involves an ability to understand the patient’s or caregiver’s world and provide supportive interpersonal communication.
Based on research on social networks in health, two different types of resources are presumed to flow through social networks: instrumental and expressive (Ensel and Woelfel, 1986). Instrumental resources consist of information and advice related to the specific chronic condition that may make it easier for the affected party to cope with his or her stressful circumstance. Expressive resources (i.e., socioemotional) consist of assertions or demonstrations of compassion, sympathy, care, spiritual advice, and group belonging. Studies have shown that both instrumental (i.e., biomedical) aid and expressive (i.e., emotional) aid impact caregiver’s psychological well–being and quality of life (Brodaty, et al., 2003).
In addition, researchers have further demonstrated the efficacy of online social support and the subsequent health benefits (Eysenbach, et al., 2004; White and Dorman, 2001). In healthcare contexts, relationships with similar others can significantly decrease the anxiety, despair, and psychological stress associated with the initial diagnosis of a chronic disease and increase an individual’s psychological well–being. Therefore, applied to Health 2.0, online social support is used as a proxy for psychological well–being and quality of life.
We conducted a content analysis of messages and content posted on various forms of social media pertaining to MECP2 Duplication Syndrome (MECP2), Rett Syndrome (Rett), and Rubinstein–Taybi Syndrome (RTS). Content analysis is a methodology used in the social sciences to study the content of human communications such as Web sites (Krippendorff, 2004). The application of content analysis to the Web is referred to as Web content analysis (McMillan, 2000).
We identified three chronic disease communities for our research sample from the National Organization for Rare Disorders — Rare Disease Database: MECP2, Rett, and RTS. We first selected MECP2 based on our previous collaborative partnership that led to the development of a comprehensive Web site. We then selected Rett syndrome because the majority of people with Rett also have MECP2 mutations. Since MECP2 primarily affects males and Rett primarily affects females, we identified a third rare disorder, RTS, which affects both sexes equally.
MECP2 was first discovered in 2005 and occurs primarily in males with concomitant X–chromosomal abnormalities. MECP2 is characterized by infantile hypotonia (low muscle tone), severe mental retardation, absence of speech, progressive spasticity, recurrent respiratory infections, and daily seizures (Van–Esch, 2008). Rett is a neurodevelopmental disorder of the brain that was first discovered in 1966 (Davis, 2011). Rett is characterized by seizures, screaming fits, inconsolable crying, and sensory problems. Unlike MECP2, Rett almost exclusively affects females.
Rubinstein–Taybi Syndrome (RTS) is a congenital syndrome that was first described in 1963 and affects males and females in equal numbers (Rubinstein and Taybi, 1963). RTS is characterized by mental retardation, moderate to severe learning disabilities, growth retardation and delayed bone age, and broad thumbs and great toes. Currently, there is no known cure for either disease, and the treatment options are uncertain.
The forms of social media consisted of wikis and blogs on the low end of the spectrum, and social networks on the high end of the spectrum (see Table 3). We were particularly interested in media that was being actively used by the communities. As a result, we did not identify active forums, content communities, or virtual social worlds for all three chronic diseases.
The wiki sites were determined by performing a search for the chronic disease on Wikipedia. We selected the blogs by performing a Google search and identifying a blog that was actively used. Finally, the social network sites were selected by identifying the Facebook group with the most active user base.
Table 3: Social media. Category Disease URL Wiki MECP2 http://en.wikipedia.org/wiki/MECP2 Rett https://en.wikipedia.org/wiki/Rett_syndrome RTS http://en.wikipedia.org/wiki/Rubinstein-Taybi_Syndrome Blogs MECP2 http://mecp2.wordpress.com/ Rett http://livingwithrettsyndrome.blogspot.com/ RTS http://rubinstein-taybisyndrome.blogspot.com/ Social network MECP2 https://www.facebook.com/groups/mecp2families/ Rett https://www.facebook.com/groups/250235058326930/ RTS https://www.facebook.com/groups/6707739429/
To analyze the messages and posts, a coding scheme was developed based on the following two major categories: instrumental support and expressive support. Instrumental messages and posts were coded as information and advice on the rare disease and treatment options. These included medications, symptoms, treatment options, opinions and experience, and tests and procedures. Expressive messages and posts were coded as demonstrations of socio–emotional support such as peer support, sympathy, compassion, spiritual advice, and encouragement. The researchers used this coding scheme to determine how the affected communities were using social media for the provision of online social support. The messages and content were posted during the months of January 2010 — July 2013.
Wikis and social support
Research has shown that Wikipedia, an online collaborative encyclopedia, is a prominent source of online health information pertaining to rare chronic diseases (Laurent and Vickers, 2009). The main MECP2 Wikipedia entry (Figure 3) contained biomedical information such as background, function, and structure of the disease. The content appears to be created by and for the medical and scientific communities. The entries are laden with scientific discourse that would be difficult for an average layperson to comprehend. For example:
MECP2 (methyl CpG binding protein 2 (Rett syndrome)) is a gene that encodes for the protein product MECP2, also referred to as MeCP2. MECP2 appears to be essential for the normal function of nerve cells. The protein seems to be particularly important for mature nerve cells, where it is present in high levels. The MeCP2 protein is likely to be involved in turning off (“repressing” or “silencing”) several other genes. This prevents the genes from making proteins when they are not needed. Recent work has shown that MeCP2 can also activate other genes.The MECP2 gene is located on the long (q) arm of the X chromosome in band 28 (“Xq28”), from base pair 152,808,110 to base pair 152,878,611.
Figure 3: MECP2 wiki.
The main Wikipedia entry for Rett (see Figure 4) also contained no user–generated content that could be classified as instrumental or expressive aid for the affected community. However, there was an extensive amount of biomedical information such as background information on the disease, causes, symptoms, and treatments that the common layperson could comprehend. However, the information on the cause of the disease is ambiguous and primarily geared towards the scientific community. For example:
Genetically, Rett syndrome (RTT) is caused by mutations in the gene MECP2 located on the X chromosome, and can arise sporadically or from germline mutations. In less than 10% of RTT cases, mutations in the genes CDKL5 or FOXG1 have also been found to resemble it. Rett syndrome was initially diagnosed by clinical observation, but the diagnosis is definitive when there is a genetic defect in the MECP2 gene. In some very rare cases, no known mutated gene can be found suggesting changes in MECP2 that are not identified by presently used techniques or mutations in other genes that may result in clinical similarities.
Figure 4: Rett wiki.
The main RTS Wikipedia entry (Figure 5) also contained no user–generated content that could be classified as instrumental and expressive aid from the affected community. Similar to the MECP2 wiki, the information seems to be created by and for the scientific and medical communities. As such, the entries are ambiguous and laden with scientific discourse. For example:
Rubinstein–Taybi syndrome (RTS), also known as broad thumb–hallux syndrome or Rubinstein syndrome, is a condition characterized by short stature, moderate to severe learning difficulties, distinctive facial features, and broad thumbs and first toes. Other features of the disorder vary among affected individuals. People with this condition have an increased risk of developing noncancerous and cancerous tumors, leukemia, and lymphoma. This condition is sometimes inherited as an autosomal dominant pattern and is uncommon, many times it occurs as a de novo (not inherited) occurrence, it occurs in an estimated 1 in 125,000–300,000 births.
Figure 5: RTS wiki.
Based on a review of the three wikis, we determined that wikis do not provide the requisite levels of information richness and social presence that would address the information needs and requirements of caregivers who have children affected by MECP2, Rett, and RTS. We found that the information is ambiguous and geared more towards the scientific communities. As such, the information is less likely to reduce uncertainty and resolve equivocality necessary to facilitate online social support for caregivers who have children diagnosed with rare chronic diseases.
Blogs and social support
Dick Sobsey, a well–known blogger in the MECP2 community, has consistently maintained the most prominent blog on MECP2 (see Figure 6). The MECP2 blog is intended for families, researchers, and professionals interested in better lives for children and adults with MECP2. The blog also has historically provided both instrumental and expressive online social support. More recently, the MECP2 community has transitioned to using Facebook for online social support.
Based on the analysis of the MECP2 blog, we identified some of the entries that provide evidence of supportive assistance. In terms of instrumental support, Sobsey posted a wish list on 22 February 2010. Couched as a plea to researchers, the wish list contained two requests: (1) a drug or medical regime to manage the chronic seizures; and, (2) treatment for chronic respiratory infections. In a response to the request, Pam Albert reaffirmed Sobsey’s concerns with the following:
You brought up some excellent points. I, too, yearn for a treatment for the seizure disorder. I have honestly lost track of how many different seizure medicines that Braden has tried and yet he still has 3 to 4 seizures every single day. Regarding the respiratory infections, Braden currently has one and is on an antibiotic. Both Albuterol and Flovent are good medicines that he uses which do seem to help.
In terms of explicit expressive support, one blog entitled “A short meditation of hope” provided an uplifting commentary. An example passage includes the following:
As parents of children with a progressive and life–threatening syndrome, the shared dream of a cure or at least major treatment that substantially eases symptoms and prolongs life is a vital focus of our hope. It is not a foolish or unrealistic hope because a genuine breakthrough certainly could occur. Going back to the definition that talks about envisioning a future that we want to participate in, however, I think we also need to envision other futures that we can accept that are not entirely dependent on that one outcome. I think these other hopes may make our lives and our children’s lives better, whether or not we or our children live long enough for big breakthrough.
Figure 6: MECP2 blog.
The Living with Rett Syndrome blog was developed by a family of a young girl who is living with Rett (see Figure 7). The blog chronicles the family’s experience and reactions to Rett. As a result, the comments to the blog posts are a direct response to the blog entries. Therefore, the blog posts primarily represent instrumental support. For example, the most recent post on 24 July 2013, highlights the child’s success in school and types of tools that were used to support the child.
Using her Tobii: the eye–gaze system that allows her to use her eyes to make a computer do and say things for her. Working on the MOVE programme: practising unsupported sitting in a variety of settings, and doing things like working on the interactive white board at the same time. Having fun with her Bugzi chair: the little wheelchair she controls with a switch that she presses herself. Her teacher says: “She absolutely loves being in control and will look around at all the displays on her route.”
Figure 7: Rett blog.
The Rubinstein–Taybi Syndrome blog (see Figure 8) is similar to the Rett blog. The blog chronicles the family’s experience and reactions to RTS. As a result, the comments to the blog posts are also a direct response to the blog entry and represent instrumental support. For example, the most recent post on 29 June 2013, highlights the child’s experience with using Baby Sign Language.
Before Maria was formally diagnosed with RTS there was a period from the age of two to three years when I started to think about how to help Maria communicate. Naturally we concentrated on speech but eventually I came across the idea of using signs as a means of expression for Maria. She must have been three years old when I taught her some baby signs and it took her only half an hour to learn about ten signs. These were mostly animal signs since animals always got her excited. Important signs like toilet, milk, more, all gone, where?, book, biscuit, bed, brush teeth, bath, pain, sorry and thank you followed soon after.
Figure 8: RTS blog.
The interactive features of the blog enabled the creation of rich user–generated content that could be easily understood by the common layperson. As a result, blogs are a better medium than wikis to support the reduction of uncertainty and the resolution of equivocality. While the blog entries provided more evidence of instrumental aid, there was very little evidence of expressive aid.
Social networks and social support
The MECP2 Duplication Syndrome Family Talk Group is a closed group that consists of 387 members (see Figure 9). Parents sought instrumental aid, such as symptoms, side effects of medications, treatment options, therapies, and home health services. For example, a parent sought information on symptoms of a drop seizure to confirm that her child was having a drop seizure. The community responded with a variety of related symptoms to include videos of children experiencing a drop seizure.
Evidence of expressive support included a parent reaching out to the community to identify others in the same geographical region who had a child who had been diagnosed with MECP2. Four parents replied almost immediately that they had children with MECP2 in the same state. The following is an example of the immediate replies:
WOW! So close to home! It’s wonderful to hear from someone from home.
Another parent felt guilty for preparing to leave on a two–week vacation to another country without her son. The community offered support such as the following:
Hugs and love! I hope you have an awesome time! It will be ok xx.
Please don’t beat yourself up. God will watch over John in your absence. It will all okay, if you weren’t meant to go you would have known. Enjoy your trip. Can’t wait to hear all about when you get back.
The parent responded:
Thanks everyone. I am grateful that I have you all. No one understands this feeling except all of you. I am so distraught right now. I am really trying to be okay with this. I have no choice but to be. Love you guys and thanks
Hello I just wanted you all to know I will lift you and your children up in my prayers every day. I pray our father in heaven will pour his love out on each one of you and the children You all are so strong and I know God is going to work wonders in your lives ... God bless and love you forever
We also discovered that the community had developed a common practice that was used as a symbol of love and prayers. The practice includes drawing a heart on the back of one’s hand and placing the child’s initial in the center of the heart. The community would then post these photos on Facebook.
Another example includes expressive support that was offered to a parent after the initial diagnosis of MECP2:
I wished i could say it gets easier, but I would be lying. Praying for strength for you and your family. You have a wonderful family here for emotional support, that I myself have found very comforting through all this.
Figure 9: MECP2 Facebook.
My Daughter Has Rett Syndrome: A Family Forum for Rett Syndrome Support is a closed support group that consists of 1,160 members (see Figure 10). The Facebook group provides a forum for discussion on individual development, problems, treatments and therapies, therapy equipment, events, current research updates, encouragement, support, inspiration, and hope. Given that the Facebook group is extensively used by the community, there were numerous examples of both instrumental and expressive support.
Parents sought instrumental aid on topics related to iPad apps, symptoms, treatments, and therapies. Some examples of a request for natural remedies to relieve constipation include the following:
U could add miralax to her food.
Prune juice works great on Trinity.
I give my daughter Bio–Kult 14 strains of probiotic bacteria. Works very well.
I use activia yogurt and alternate with regular yogurt and we don’t really have problems.
A recent example of expressive aid concerns a single mother who is overwhelmed with the responsibilities of caring for a special needs child. Some examples of expressive aid to this exasperated mom from the community are as follows:
Sorry. This too shall pass. Prayers your way.
Praying for better times and knowing that there's will be a little sun though so hard to see sometimes
We are all in this together. Vent away, anytime you need.
This is a good place to vent! Know that we are all here to support each other!!
Figure 10: Rett Facebook.
The Family & Friends Support for Rubinstein–Taybi Syndrome (RTS) social network site is an open group for the family and friends of people diagnosed with RTS (see Figure 11). The group includes 659 members. Parents sought instrumental aid such as advice on potty training, digestive problems, walking support, speech problems, and alternative therapies. A particular parent requested treatment options for her three–year–old son. Examples of responses included the following:
Genlax works for our son along with lots of prune juice in his diet.
Miralax usually works for our daughter along w/ juice and physical activity like walking, jumping.
We used yogart, and later Dufalax. We also used a belly massage, lower belly, up, across and down, it also helped a lot.
Lots of water, and also prune juice works amazing for my son. If he likes dates/figs/prunes — they are like magic. Someone also made a recipe for “poop” magic, they blended prune, raisin, dates, figs with some juice.
There were also numerous examples of expressive support. For instance, a sister of a patient requested positive thoughts and prayers for her brother, who was rushed to the hospital. Example responses included the following:
Sending prayers and good wishes your way — keep us updated xx.
Sending you all positive thoughts, strength and prayers.
My father in the name of Jesus I pray for Ross right now. I agree that your hand be upon him, that you touch him from the top of his head to the souls of his feet. Guide and direct the doctors, give them wisdom. I pray for Ross’s family that you comfort them. Believe for a good report on this request in Jesus name
We are praying for all the little ones and their families — sending our love and sending our support!
Figure 11: RTS Facebook.
Based on reviews of the social network sites (see Table 4), we determined that based on the multimodal interaction, social networks provided a higher level of online social support than the wikis and blogs. The Facebook threads were more interpersonal and feedback was almost immediate. As a result, social network sites facilitated higher levels of both instrumental and expressive aid.
Table 4: Summary of results. Social media Chronic disease Instrumental support Expressive support Wiki MECP2 Low None Rett Low None RTS Low None Blogs MECP2 Moderate Low Rett High Low RTS High Low Social network MECP2 High High Rett High High RTS High High
Various forms of social media offer unprecedented opportunities to facilitate online social support. Based on our theoretical model, we observed that parents and/or caregivers with children diagnosed with rare chronic diseases experience more online social support from mediums that provide higher levels of information richness and social presence.
Wikis rank the lowest on information richness and social presence. As it relates to information richness, the information contained on all three wikis was written in medical terminology that is very ambiguous and may be confusing to a layperson. In addition, there were no mechanisms to facilitate intimacy or immediacy. For example, users cannot create personal profiles nor set alerts for updates. As a result, wikis lacked the information richness and social presence necessary to facilitate online social support.
According to our model, blogs also rank low on information richness and social presence. While blogs are being effectively used to facilitate instrumental aid, blogs lack the information variety and multimodal interactivity necessary to facilitate expressive aid. Blogs primarily operate on the views, opinions, and experience of the blogger. Users are unable to initiate discussions. In addition, only the blogger is able to create a personal profile. As a result, blogs lack the capacity to facilitate intimacy and immediacy.
Based on our model, social networks rank high on information richness and social presence. We specifically found that social network sites provide a higher level of information richness through greater information variety (e.g., photos, videos, interactivity, and shared documents), multimodal interaction, and language translators. In addition, we found that social networks provide a higher level of social presence by providing mechanisms to support intimacy and immediacy. For example, the MECP2 and Rett communities were closed global groups that required permission to join. A user would have to demonstrate that he or she has a connection to the community. In this way, situational similarity facilitates intimacy. Furthermore, Facebook provides awareness tools and alerts in order to facilitate immediacy. As such, social networks facilitate higher levels of online social support than blogs and wikis.
The goal of this paper was to better understand how various forms of social media may be more effective at facilitating online social support. As such, we developed a theoretical framework that seeks to describe the relationship between social media use and online social support. Consistent with our model, we found that social mediums that rank higher on information richness and social presence are more effective at facilitating online social support.
As with all research, our findings are subject to limitations. First, we only explored three chronic diseases. Additional diseases and social media Web sites need to be examined to come to stronger conclusions. Second, we used a qualitative approach to identify subjective evidence of online social support. Third, we only explored the functional components of social support. Despite these limitations, this study does provide promising insights on the relationship between social media use and online social support. In addition, this study provides implications for practice and future research.
Implications for practice and research
The study contributes to health information systems design by developing a hierarchical classification scheme which explicates how and why various forms of social media may be more effective at facilitating online social support in the context of rare chronic diseases. The model can be specifically used to elicit requirements in order to improve the usability of the health information systems. The specific requirements outlined in the model are the reduction of uncertainty and the resolution of equivocality.
Specifically designers can improve the reduction of uncertainty and resolution of equivocality by developing tools that rank high on information richness and social presence. Information richness can be improved through the design of multimodal interfaces that support text–based communication, voice, images, and video. As it relates to social presence, designers could use closed groups and incorporate user profiles to support intimacy. Likewise, designers could employ awareness features and alerts to support immediacy.
Future research is needed on additional diseases and social mediums in order to confirm the relationship between social media and online social support. Future research should also employ quantitative methods in order to provide objective evidence to support the relationship between social media use and online social support. Researchers could use the current model in order to develop a survey. The researchers could then survey the same or similar groups in order to re–examine the relationship between social media use and online social support. Future research should also incorporate both the functional and structural dimensions of social support. This research could employ a social network analysis in order to examine how the structural configuration and properties of social support networks facilitate instrumental and expressive aid.
About the authors
Roderick Lee received his Ph.D. in information sciences and technology with a concentration in management and organization from the Pennsylvania State University. He joined the faculty of the School of Business Administration as an Assistant Professor of Information Systems in the Fall of 2008. His research and teaching interests are centered on information technology and groups.
E–mail: rlee [at] psu [dot] edu
Lynette Kvasny received her Ph.D. in computer information systems from the Robinson College of Business, Georgia State University. Her research focuses on how and why historically underserved groups appropriate information and communication technologies (ICT). She has designed, implemented and assessed community computing projects in economically challenged neighborhoods in Atlanta, Ga. and West Philadelphia and Harrisburg, Pa. Her current research examines the performance of racial and ethnic identities in virtual communities, ICT education and workforce participation in the African Diaspora, and the influence of racial, class and gender identities on health information seeking and content creation.
E–mail: lkvasny [at] ist [dot] psu [dot] edu
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Received 23 April 2013; revised 30 September 2013; accepted 8 October 2013.
“Understanding the role of social media in online health: A global perspective on online social support” by Roderick Lamar Lee and Lynette M. Kvasny is licensed under a Creative Commons Attribution–NonCommercial–NoDerivatives 4.0 International License.
Understanding the role of social media in online health: A global perspective on online social support
by Roderick Lamar Lee and Lynette M. Kvasny.
First Monday, Volume 19, Number 1 - 6 January 2014
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