Progress! Literature Review 2.0

I didn’t bother to paste my figures in again (you get the idea and if you really want to see them, you can look at my previous post). This is still very work in progress. I need a Chronic Pain textbook (from this year) that I have requested from the library (and haven’t got yet) in order to truly finish this. It also needs to be cut down. By about 800 words. Haha. That is just for my assessment, so I am pretty much going to have 2 literature review versions, one for the thesis and one for the coursework. 

I am now just patiently awaiting my ethics approval so I can collect my data and get to the fun stuff 😛

 

 

 

 

A review of the Self-Management of Chronic Pain using Facebook as an online support network

This review of the literature critically explores the current models exemplifying Web 2.0 (Hill et. al., 2014) and defining Chronic Pain and the current research of the pain scale and self-management of Chronic Pain (McCaffery & Pasero, 1999). A brief history of the traditional support group indicates the shift of support mechanisms due to prevalence of social media, through the construction and success in creation of online communities (Turban et.al, 2006; McKnight et al., 2002).
This chapter will presents a review of literature exploring the online modes of support available and their implications on the self-management of Chronic Pain.

Social Media

Computer mediated communication

Proliferation of computer-mediated communication (CMC) has increased the potential ways in which individuals can access and receive social support. CMC is growing rapidly as a tool for global communication and has an effect on the way people interact in a mediated environment. CMC is marked with higher levels of self-disclosure in conversation as opposed to face-to-face interaction (Jiang et. al, 2011) as people have the potential to feel less inhibited when conversing in online environments (Suler, 2004).

Walther and Parks (2002) and Walther (2013) discern the internet as being a successful medium for social support and through computer mediated communication (CMC); groups are able to achieve virtually everything that a face to face group can accomplish. An example of the growth of CMC was documented in 2008–09, with three-quarters (74%) of people aged 15 years and over having used the internet in the previous 12 months (Australian Bureau of Statistics, 2011). According to the Australian Communications and Media Authority (2013), in June 2013, 10.81 million people went online more than once a day—a seven per cent increase compared to the same time last year and a 72 per cent increase from June 2008.

The most important factor contributing to the success of CMC is that it is not limited by geographical or temporal restrictions as might be the case for a face-to-face setting (Braithwaite, Waldron, & Finn, 1999). There is the potential for a more widespread group composition and allows users to feel as though they always have access to communication.

Walther’s (1996) Hyper-personal Communication Model proposes that computer-mediated communication is valuable on providing a better communication and better first impressions compared to face to face communication. Moreover Dunn, (2013) argues that computer-mediated communication allows more understanding and magnetism between two individuals than face-to-face communication. Contrary to this researchers found that the absence of physicality and social context were two of the most cited disadvantages of CMC use in social support (Colvin et al., 2004). CMC often takes place through mediums lacking in auditory or visual cues, eliminating non-verbal cues almost entirely. Non-verbal cues are principally important in communication as they often complement verbal cues through emotional support or clarification (Brehm, Kassin, & Fein, 1999).

Compared with face-to face communication, interactions that occur in the absence of non-verbal cues (e.g., email, telephone, or instant messaging) differ systematically to that of face to face interaction (Lewandowski, Rosenberg, et. al 2011) and this is important to note when analysing CMC. These cues however do have the potential to be replaced with icons or “emoticons” to convey non-verbalisms in the case of email or instant messaging.

 

Social Media and Web 2.0

Social media are forms of electronic communication through which users create online communities to share information, ideas, personal messages and other online content. Social media provides a way for people to connect with one another using the internet to exchange and share information (White, 2012).  Scott & Jacka (2011, pg. 5) assert that social media “is the set of web-based broadcast technologies that enable the democratisation of content, giving people the ability to emerge from consumers of content to publishers.” Social media refers more fluidly to the technological or structural aspects of online systems (Hill et. al., 2014) and holds an important grounding in this study as it is the means by which users can create and develop online communities and networks. One of the most significant developments connected to social media is the rise of social network sites such as Facebook, LinkedIn, MySpace and Google Plus (boyd & Ellison, 2013).

These social media sites are web-based applications that allow users to create and publish their own content online and this process can be defined as being an integral part of Web 2.0 (Barton & Lee, 2013). Weblogs, Facebook and Twitter are all common examples of Web 2.0 as they provide a framework for people to publish their own texts and share their content with others. Web 2.0 systems refer to sites with user generated content such as blog text, music, videos and photos (Anderson, 2007; Han, 2011) and have allowed for consumers to become the creators of content (Asberg, 2009). Ravenscroft (2009) has also considered the Web 2.0 to be the social and participative web with emphasis on social networking, media sharing and virtual communities.

The differentiation between Web 1.0 and 2.0 systems is that typically in Web 1.0, information resources were available without a discussion, interactive or sharing component. Web 1.0 can be characterised by information consumption, rather than creation and sharing of content. Web 2.0 should not be viewed as strictly separated from its predecessor, but more rather a “fuller realisation of the true potential of the Web platform” (Han, 2011, pg. 36).

 

 

The divergence between Web 1.0 and 2.0 can be somewhat imprecise, but Figure 1 presents analogue, digital, Web 1.0 and 2.0 media types progressing over time from left to right.

The dotted line in Figure 1 indicates which media we consider to be social media and the shift into Web 2.0 (Hill et. al., 2014).

Social networking sites (SNS) are a prominent exemplification of Web 2.0, encompassing the participation and collaboration in communities of users. The users of social networking sites such as Facebook have the ability to interact, share and connect with one another; exchanging values, leaving comments and offering support. Web 2.0 is seen to incorporate particular features of website design, such as self-generated content and interactivity and is not just a label given to a certain set of sites or a chronological description of a sites development. SNS are an important concept to consider as they are viewed as a “reflection of society” (White, 2012, pg. 1).  To properly contextualize social network sites, we position them within the broader landscapes of the innovative tech scene of “Web 2.0” and the development of computer-mediated communication (boyd & Ellison, 2013).

Sociality on Facebook

Duggan & Smith (2014) from the Pew Research Centre found that 73% of online adults now use a social networking site of some kind, withFacebook being the dominant social networking platform. Facebook had around 1 million members by the end of its first year in December 2004, and now lays claim to some 1.23 billion monthly users – 945 million of which access the site on mobile devices (Ross, 2014).

Facebook is one of the most visited sites on the internet (Elliott & Polyakova, 2014; Hill et. al., 2014) and users ‘friends’ comprise virtual communities linked by shared interests or opinions. Through Facebook, users are able to ‘like’ different organisations, make new contacts, socialise with friends and become members of open or closed discussion groups created by other Facebook users (Morales, 2011). Being a part of an online social networking community such as Facebook allows users to develop relationships with people who share similar interests with them while accepting and incorporating social media into their daily lives (boyd & Ellison, 2007). Since this definition of SNS that was presented in 2007 by boyd & Ellison, the online landscape has changed vastly. Social networking sites proliferate and evolve; defining what constitutes a social network site becomes increasingly challenging. A social network site can be defined as a networked communication platform in which participants have uniquely identifiable profiles, publicly articulated connections and they can consume, produce, and/or interact with streams of user generated content provided by their connections on the site (boyd & Ellison, 2013, pg, 158).

The widespread popularity of social media sites, including Facebook suggests that these online technologies are successful because of the acceptance of usage in the personal, social and professional life of many individual users (Rauniar et. al., 2014). Young users still make up the majority of Facebook members, but some research suggests the site is struggling to remain appealing to youth (Ross, 2014). An iStrategyLabs study of US users found Facebook has lost 3 million teenagers since 2011, which equates to a 25 per cent drop (Saul, 2014). Facebook is experiencing a boom in older users, with the number of over-55s up 80 per cent in 2013. The growing diversity of people signing up on social media platforms, such as Facebook, suggest that it is a relatively easy to create an account and begin using and enjoying the services offered by the social networking site and that age is not a boundary.

Sociality can be defined as the extent to a person socialises or interacts with others and their tendency to associate with groups. It is the degree to which individuals tend to associate in social groups and form cooperative societies and was once a survival response to evolutionary pressures (Smelser &  Baltes, 2001; Hill et. al., 2014). People are fundamentally social; their association with others and the formation of groups is created for the simple goal of forming relationships (Fiske, 1992).  The growth of online channels of communication and the subsequent interaction indicate an expansion or alteration of the social context. Human sociality is seen to be both limited and heightened through online communication platforms such as Facebook. Dunn, (2013) argues that communication through SNS allows more understanding and magnetism between two individuals than face-to-face communication. The online environment allows for the reduction of geographical and temporal restrictions (Braithwaite, Waldron, & Finn, 1999) and through the manifestation of SNS, relationships and creation of online community flourishes. Alternatively online spaces can present challenges to individual boundaries and privacy. It is well understood that people say and do things in cyberspace that they ordinarily wouldn’t do or say in the face to face world. They loosen up, feel more uninhibited and express themselves more freely. Researchers call this the online disinhibition effect (Suler, 2004). For the most part, others only know what a person tells them. This anonymity is one of the factors that create the disinhibition effect. When people have the opportunity to detach their actions online from their in-person lifestyle and identity, they feel less vulnerable about self-disclosing or acting out (Suler, 2005).

There can be different way to conceptualise individuals in their social contexts to help understand the impact of online sociality on communication. The social model has three depicted levels of online communication (Figure 2. Adapted from Hill et. al., 2014), broadcast, conversational and community based conversation
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Social media was originally all about broadcasting to the world but a shift is taking place in the way that people are using social network sites (SNS). People wish to connect with like-minded individuals to pursue and share their passions, start meaningful conversations, and collaborate to take action on issues important to them (Rosenthal, 2011).

Figure 2 outlines the process that these broadcast social networking occurs at the individual level, with users speaking to the crowd or from a virtual soap box, sharing information, passions or advice aimed at specific audiences to start a ‘conversation’.  Conversational social networking then happens at an interpersonal level, between two people and is similar to analogue or face to face communication, through a computer mediated environment. Once these conversations are created community based conversation via social media happens when groups communicate with one another within their membership ranks. The key concept at this communication level is sharing information; conversations are many to many – an individual may start the conversation but there is the potential for many to join in and see the conversation, even if they are not a contributing part of it. This social model best describes the way in which relationships and sociality develops in an online group environment; social network sites dynamically facilitate this kind of content sharing.

Facebook Groups and the creation of online community

Social media involves the extensive use of electronic media for people in contact through online communities (Toral, 2009), but there is no ideal construct of an online community (De Souza & Preece, 2004).  Virtual communities are a communication platform that can be established on a social networking site through which people that hold the same interests and concerns can interact with one another through cyberspace (Turban et.al, 2006; McKnight et al., 2002).  The widespread rise of virtual community has changed the way that social interactions take place (Jyh-Jeng, Ying-Hueih & Yu-Shuo 2010) through computer mediated communication and face to face. 

Online communities can therefore come in many different shapes and forms. Users are able to participate in a group forming practice on Facebook, grouping like-minded individuals and allowing them to participate in group discussions.

Table 1. Facebook Group Privacy Options (2014)

Open

Closed

Secret

Who can join?

Anyone can join or be added or invited by a member

Anyone can ask to join or be added or invited by a member

Anyone, but they have to be added or invited by a member

Who can see the group’s name?

Anyone

Anyone

Current and former members

Who can see who’s in the group?

Anyone

Anyone

Only members

Who can see the group description?

Anyone

Anyone

Current and former members

Who can see the group tags?

Anyone

Anyone

Current and former members

Who can see what members post in the group?

Anyone

Only members

Only members

Who can find the group in search?

Anyone

Anyone

Only members

Who can see stories about the group on Facebook (like in News Feed and search)?

Anyone

Anyone

Only members

There are three privacy options for groups on Facebook: Open Closed and Secret. Table 1 outlines the privacy options for groups on Facebook by showing who can see and post within the group, who can find the group and see the group’s members. This is important as groups with sensitive content or groups that do not want to be searchable on Facebook by the general population will have the option to change this setting. For the purpose of this research, the Facebook group that will be investigated is a closed group.

Within the group environment on Facebook protocols and guidelines are monitored by administrators, who have the control of the group composition as they accept members to join the group. In addition to everything that group members can do, a group admin can: edit the group description, tags and setting, add more admins to a group and remove abusive posts and remove or block members (Facebook Group Admin Roles, 2014).

Social networking sites host these online communities of people who share interests as a platform for users to interact through the use of e-mail and instant messaging services (Shin, 2010). The term ‘platform’ shapes the performance of social acts online, rather than merely facilitating them. The providers of software and services help code the social activities into a “computational architecture” (Djick, 2013, pg. 29)

As Web 2.0 is considered to be the social and participative web with emphasis on social networking, media sharing and virtual communities (Anderson, 2007; Ravenscroft, 2009; Han, 2011) Facebook groups can be considered as the epitome of this definition. Research from Howell, Taylor et al, (2012) identified the effective use of Facebook groups as a mechanism for support and creation of online community groups. This indicates that there is a potential for an inherent impact on health status and enhanced quality of life for people with Chronic Pain, through engaging and sharing within these online environments (Merolli, Martin-Sanchez & Grey 2013).

 

Chronic Pain

Chronic Pain and the Pain Scale

Chronic Pain persists for an extended period of time and is usually defined as pain lasting for longer than six months, or pain that persists beyond the expected healing time (Field & Swarm, 2008). Clinically, pain is defined by ‘what the patient states it is’ and then it is up to the physician to determine precisely what the patient means (Jay, 2007, pg.1). It is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage (APS, 1992; Mersky & Bogduk, 1994).  Pain is not determined by tissue damage alone; there is no predictable relationship between identifiable tissue injury and the sensation of pain (McCaffery & Pasero, 1999).

There are a range of different outcomes a patient could potentially receive when investigating the cause of their chronic pain including: Fibromyalgia, pain in the muscles and ligaments, Chronic Fatigue Syndrome, patient always being tired and Non-specific Neuropathic Pain, pain caused by faulty nerves (Butler & Moseley, 2003). The reasons for the chronic pain are sometimes unable to be defined and diagnoses are very extensive. This is because people who have Chronic non-malignant pain may describe pain for which little or no tissue damage is found but this is sufficient enough to explain pain is not proof that the pain is of psychological origin (Portenoy & Kanner, 1996). 

Chronic cancer pain and chronic non-malignant pain reflects both nociceptive and neuropathic pain. Figure 3 illustrates the difference between nociceptive and neuropathic pain and provides example of the type of pain experienced in each case. Nociceptive is the term used to describe how pain becomes conscious through four basic processes: transduction, transmission, perception and modulation. Neuropathic pain is distinctly different from nociceptive pain as it is pain that is sustained by an abnormal processing of sensory input by the peripheral or central nervous system (McCaffery & Pasero, 1999).

Pain rating scales are used in clinical practice, when dealing with pain intensity in patients. They provide a visual guide for medical practitioners and patients to attempt to measure how much pain a person is in. The Graphic Rating Scale (GRS) is a horizontal (sometimes vertical) 10cm line with word or numbers between extreme ends of the scale. The Faces Rating Scale was developed primarily for use with young children. Figure 4 gives illustrates both the Graphic Rating Scale and the Faces Rating Scale (Jensen & Karoly, 1992).

 

The reality of Chronic Pain for many patients and their families can be quite difficult to accept as there may be no cure. It is possible to improve quality of life, increase function and reduce sense of suffering but often people can feel isolated (Cowan, 2011). Chronic Pain can be a very difficult illness to understand and has been labelled the “invisible illness” (Vanderhaeghe, 2000, pg. 52).

Self-Management of Chronic Pain

Effective self-management is an established therapeutic goal for people living with and treating Chronic Pain (Borkan & Cherkin, 1996). Therefore the understanding the extent and nature of daily self-management of chronic pain symptoms is important. Numerous of studies in clinical populations of Chronic Pain sufferers have consistently shown that self-management of symptoms and the support provided by chronic pain community groups produce better outcomes (Cohen et al., 2000; Von Korff et al., 1994).

The problem of inadequate pain management is so great that contributors to Australia’s National Pain Strategy (2010) have called for Chronic Pain to be recognised as a National Health Priority Area (NHPA). The National Pain Strategy (2010) has also cited research which suggests that as many as one in five Australians will suffer Chronic Pain in their life time, an occurrence that increases to one in three in older people (Johnstone, 2013). Access Economics (2007) argues that the human, social and economic costs of Chronic Pain management represent Australia’s third most costly health problem and that alarmingly, 80% of people in Chronic Pain will not have their pain managed effectively.
Often clinical sites do not have the time or resources to help address long term management of Chronic Pain so they are often referred to an external pain management program. Flor, Fyrich and Turk (1992) found that multidisciplinary programs are more effective than clinical (medical) only treatment programs. More rigorous studies are needed not only on patient outcomes of these studies but also on the cost/benefit ratio, patient selection and the makeup of multidisciplinary pain management programs (McCaffery & Pasero, 1999).

The increasing pressures that are facing our health care system can place burdens on patients, some who are have been waiting more than two years to see pain management specialists (Johnstone, 2013); there is mounting pressure regarding the importance of effective self-management of Chronic Pain, so that people have access to information and assistance without having to wait until it is too late (Blyth, et al. 2005). It is clear that good self-management is necessary for effective medical care for chronic illness (Von Korff et al., 1997) and social media is seen to be an effective mechanism for this; a study conducted by Professor Jenny Strong states that 21% of people used social media to find out about the pain experiences of others so as to compare it to their own conditions (Anonymous, 2012).

 

 

 

 

 


Support Groups

The evolution of the support group

Support groups can be a helpful tool as they allow members to share comparable experiences and similar challenges they may be facing, which can lead to the exchange of social support (Gottlieb, Maitland et al., 2013) and provide the opportunity for social comparison with peers (Campbell, Phaneuf, & Deane, 2004).
The small support group movement emerged to combat the forces of fragmentation and anonymity within society; to enhance the engagement and practice of human community (Wuthnow, 1994; Kurtz, 1997).

Specialised groups support sessions were documented in the 1950’s (Wuthnow, 1994, pg. 40) and the movement was documented to have developed on a national scale in the 1960’s The majority of these small groups were run through the Catholic Church as religious organisations realised that small groups could play a vital part in their programs. Support groups are defined as groups that meet for the purpose of giving emotional and informational support to people who share a common problem or condition (Kurtz, 1997).
During the 1980’s the small group movement grew rapidly and spread to other settings; group participation was recommended for those who could not afford high priced fees for professional counselling. The 1990’s saw the development of therapy groups modelled after the twelve steps of recovery process (Kurtz, 1997, pg, 7). In addition to these, countless varieties of self-help and support groups have been formed to meet more specialised needs in the population (Wuthnow, 1994, pg. 44; McKay & Paleg, 1992).  With the rapid growth of Internet and computer-medi ated communication over the last decade, online support groups (OSGs) have developed as a new setting for social support (Chung, 2013).

Development of online support groups

Online support groups offer participants benefits that face-to-face groups do not: greater accessibility in terms of time and geographic proximity and the ability to obtain information without face-to-face interaction. Participation in online support groups can also be a source of empowering outcomes such as feeling informed, increased confidence with physicians, increased acceptance, confidence, optimism and enhanced social well-being (Blank, Schmidt, et. al., 2009). In recent survey, about a third of people diagnosed with chronic health conditions reported visiting OSGs devoted to their health issues (Annenberg National Health Communication Survey,2008 ).

There are often significant geographic, economic and educational barriers for people living with Chronic Pain (Keogh, Rosser & Eccleston, 2010). Developments in computing technologies have led to facilitating the management of Chronic Pain and the barriers of access previously faced.  Aside from condition management, online support groups are also a venue where patients may find encouragement and understanding from individuals who have had similar experiences (Bartlett & Coulson, 2011).

There are noted disadvantages that can be attributed to the specific characteristics of online asynchronous communication through online support groups. Among these is the incapability to make use of non-verbal cues through the Internet making it more difficult to detect some nuances of communication (Finfgeld, 2000; Lewandowski, Rosenberg, et. al 2011). Another aspect is the possible time lag between the time an individual poses a question and receives a response (Lamerichs, 2003). Finally, it has also been suggested that many forums are so active that it can be very hard to keep up with all postings (Han & Belcher, 2001). It often remains uncertain for the participants of online support groups if and when to expect a reaction to a posted question within their group. However, this limitation should not be over-elaborated as a study by Van Uden-Kraan et. al (2008) revealed that most of the postings containing a question, received a response within a reasonable period of time.

Face-to-face social support is laden with more non-verbal cues, and thus will result in lower levels of disruption over time. Fewer cues are available in CMC-derived social support, which will thus lessen supports overall impact (Lewandowski, Rosenberg, et. al 2011). Contrary to this, Owen et al. (2010), have examined various studies and demonstrated that participation in online support groups can have a positive impact on individuals’ health outcomes.

The bulk of the literature that investigates computer-mediated social support examines formal support groups that are convened around a specific illness or condition (e.g., HIV/AIDS) (Coursaris & Ming, 2009). Limited attention has gone to the examination of informal social support that occurs in non-face-to-face contexts on informal social support networks, such as Facebook closed groups.

 

Support Groups on Facebook

It is clear that good self-management is necessary for effective medical care for chronic illness (Von Korff et al., 1997) and social media is seen to be an effective mechanism for this; a study conducted by Professor Jenny Strong states that 21% of people used social media to find out about the pain experiences of others so as to compare it to their own conditions (Anonymous, 2012). According to Pew Internet, about 60% of those who search the Internet for health information use online social media (Fox, 2009).

Social media, with its ease of access and prominence in web 2.0 culture could help sufferers gain ongoing support for their condition. Social media closed groups on platforms such as Facebook are increasingly popular for people to turn to for support and information. Internet based support groups offer several unique advantages compared to face -to -face groups .Unlike offline support groups, OSGs transcend geographic boundaries (Chung, 2013). Online support groups based on social media platforms have a great potential for a much larger and diverse group composition (Lowe et. al.,2009), which in turn allows members to potentially access a wider variety of information, advice and support (Coulson & Knibb, 2007). As the nature of Chronic Pain is are very diverse, this is an advantage for members of these groups. The growing diversity of people signing up to social media platforms, such as Facebook, suggest that it is relatively easy to create an account and begin using and enjoying the services offered by the social media platform (Carmichael, 2011).

In addition, since there are no formalised guidelines or professional facilitators for online support groups, the exchange within the group might include undesirable, antagonistic and socially inappropriate remarks (Gavin et al., 2008 ). On Facebook however, closed groups are monitored by admins, who have the control of the group composition as they accept members to join the group and are usually accompanied by a ‘Group description’ outlining the guidelines and rules for membership within the closed group (See Figure 5.)

Though important in any condition, social media support groups like this may be particularly important for a condition like Chronic Pain, specifically fibromyalgia (Bennett, Russell et. al 2010; Rutledge, Mouttapa et. al, 2009) as those with less common medical conditions can easily locate people facing similar situations (Lasker, Sogolow,& Sharim, 2006; Lowe, et al., 2009).

The social media phenomenon is an integral part of Internet culture and thus published literature describing social media interventions and support for chronic disease management need to become more prevalent. It has been suggested that social media may allow for communication processes that differ from those offered by other information technologies, such as the traditional online support group interactions (Fox, 2011). This shift is important to note as it cements the significance of the idea of Web 2.0 concept (Hesse, et. al., 2011).

There has been little attention given to understanding the factors which may contribute to the success (or not) of online support groups during the course of their existence (Coulson & Shaw, 2013) and the composition of such groups on social media platforms such as Facebook. There is also limited research to examine factors that prompt individuals with to seek online support through informal support mechanisms, such as Facebook groups and this research hopes to address these reasons.

 

 

 

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