Literature Review – Second Edit

Well, I have 5 pages of references and I am 500 words over word count for the assignment. I’m sure that’s fine though. I have plenty of edit (condensing) time. Even though I probably could have written 1000 more words.

Enjoy. I doubt anyone will read this, but it looks really pretty. Haha.

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

A review of literature will look critically at the current models exemplifying Web 2.0 (Hill et. al., 2014), defining Chronic Pain, the understanding of the pain scale and self-management of Chronic Pain (McCaffery & Pasero, 1999). It overviews a brief history of the traditional support group and how support mechanisms have shifted during the prevalence of Web 2.0 and social media, through the construction and success in creation of online communities (Turban et.al, 2006; McKnight et al., 2002).
This chapter will provide an extensive review of literature looking at why patients are turning to online modes of support and the implications that they can have in self-management of Chronic Pain. Additionally, it will establish a foundation for testing the Technology Acceptance Model (TAM) in relation to the use of Facebook.

Social Media

Social Media and Web 2.0

Social Media most commonly refers to the web-based technologies for communication and sharing over the internet. Although there is no single agreed upon decision, Scott & Jacka (2011, pg. 5) claim 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 needs to be distinguished from other terms that may refer more to the technological or structural aspects of online systems (Hill et. al., 2014).

The differentiation can be made between Web 1.0 systems; typically information resources without a discussion, interactive or sharing component. Web 2.0 systems refer to sites with user generated content such as blog text, music, videos and photos (Anderson, 2007) and has 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 divergence between social media and web 2.0 can be somewhat imprecise, but Figure 1 presents analogue, digital, web 1.0 and web 2.0 media types progressing over time from left to right.

 

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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).

Facebook

With almost 1 billion active users as of 2012, Facebook is one of the most popular sites on the internet (Hill et. al., 2014).  Facebook users and their ‘friends’ comprise virtual communities linked by shared interests or opinions. Through Facebook, users are able to ‘like’ different groups and organisations, make new contacts and friends and become a member 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). 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).  Carmichael (2011) suggests that about 40 percent of users of Facebook are 35 years and above. The growing diversity of people signing up on social media platforms, such as Facebook, suggest that it should be relatively easy to create an account and begin using and enjoying the services offered by the social media platform.

 

Facebook 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 agreed definition or ideal construct of an online community (De Souza & Preece, 2004).  Virtual communities are a communication platform, usually established through 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).  There are often rules and guidelines used in these closed groups and on Facebook they are monitored by admins, who have the control of the group composition as they accept members to join the group.

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

The shift to Web 2.0 as stated by Ravenscroft (2009) considers the web 2.0 to be the social and participative web; with emphasis on social networking, media sharing and virtual communities. 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 with these online environments (Merolli, Martin-Sanchez & Grey 2013).

 

Social media as a means for patient support

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).

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. They not limited by geographical or temporal restrictions as might be the case for a face-to-face group (Braithwaite, Waldron, & Finn, 1999) but there may be restrictions for some users if they are physically incapable or do not have adequate internet access. Online support groups based on social media platforms have a great potential for a much larger and diverse group composition (Wright & Bell, 2003), 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.

 

Sociality on Facebook

Sociality can be defined as the extent to a person socialises or interacts with others and their tendency to associate with groups (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. These social media platforms allow for the reduction of geographical and temporal restrictions (Braithwaite, Waldron, & Finn, 1999), manifestation of relationships and creation of online communities through Facebook groups. 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).

There can be different way to conceptualise individuals in their social contexts to help understand the impact of online sociality on communication. The sociality hierarchy model has three depicted levels of online communication (Figure 2. Hill et. al., 2014), broadcast, conversational and community based conversation.


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Broadcast social networking occurs at the individual level, with users speaking to the crowd or from a virtual soap box, sharing information about themselves for anyone to consume; one person communicating with many others. Conversational social networking happens at an interpersonal level, between two people and is similar to analogue or face to face communication. 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.

 

 

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). 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 diagnoses 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. People who have Chronic non-malignant pain may describe pain for which little or no tissue damage is found, but the inability to identify tissue damage sufficient enough to explain pain is not proof that the pain is of psychological origin (Portenoy & Kanner, 1996). 

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Chronic cancer pain and chronic non-malignant pain may reflect both nociceptive and neuropathic pain. Figure 3 highlights the difference between nociceptive and neuropathic pain and gives an 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 an example of both the Graphic Rating Scale and the Faces Rating Scale (Jensen & Karoly, 1992).

 

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

Self-Management

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).

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 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 (Anonymous 2012); 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. The movement was documented to have developed on a national scale in the 1960’s, but specialised groups support sessions were documented in the 1950’s (Wuthnow, 1994, pg. 40). The majority of these small groups were run through the 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 more rapidly and spread to other settings as well; 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 groups have been formed to meet more specialised needs in the population (Wuthnow, 1994, pg. 44; McKay & Paleg, 1992).


Development of online support groups and support groups on Facebook

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, and optimism; and enhanced social well-being (Blank, Schmidt, et. al., 2009).

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 and groups located on social media platforms. 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). 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 worry should not be over-elaborated, 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.

The growing diversity of people signing up to social media platforms, such as Facebook, suggest that it should be 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 (Finfgeld, 2000; Finn, 1999).  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.)

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Though important in any condition, this may be particularly important for a condition like Chronic Pain, specifically fibromyalgia (Bennett, Russell et. al 2010; Rutledge, Mouttapa et. al, 2009).
Those who suffer from this condition can potentially experience a wide range of symptoms including pain, fatigue, sleep disturbance, depression, anxiety and cognitive impairments.

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 also 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 (Fox, 2011). This shift is important to note as it cements the significance of the idea of Web 2.0 (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.

Models and Tools

Content analysis

Content analyses can provide useful and important information about conversations held without the researcher being present (Bjornsdottir, 1999; Neuendorf, 2002). It explores the systematic, objective and quantitative analysis of message characteristics. The most distinctive characteristic of content analysis that differentiates it from other more qualitative methods is its attempt to meet the standards of the scientific method (Neuendorf, 2002, pg. 10); entailing a systematic reading of a body of texts, images and symbolic matter, not necessarily from an author or user’s perspective.

 

 

Technology Acceptance Model (TAM) and use of Facebook

One widely accepted theory on the actual usage behaviour of a new technology has been the technology acceptance model (TAM) proposed by Davis (1986, 1989) outlined in Figure 6. A review of scholarly research on information system acceptance and usage suggests that TAM has emerged as one of the most influential models in this stream of research (Venktatesh and Davis, 2000). TAM was developed with an original emphasis on the design of system characteristics and fails to take into account some significant characteristics of social media. TAM did not take into consideration that the information system could be used outside the organizational settings by individual users, and such usage can also have an “entertainment” component present.

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TAM does not address the roles of other users in influencing an individual’s attitude toward social media, and consequently the usage behaviour. The psychological concept of social influence is rooted from the assumption that a person’s behaviour is heavily influenced by the behaviour and presence of others.

Netnography as a tool

Netnography bridges the gap between passive data collection and the investigator-initiated, more traditional way of collecting data from participants. Online communication media possesses a certain ontological status for their participants, acting as a media of cultural transaction; not only the exchange of information, but also systems of meaning (Kozinets, pg. 12, 2010). The hypothesis that guides ethnographic enquiry is that “any group of people interacting together for a period of time will evolve a culture” (Patton, 2002, 81). Cultures have previously been understood as geographically bound groups, but as stated by Boyd (2009) “geography can no longer be the defining framework for culture” as groups and communities are constructed online using computer mediated communication (CMC) technologies.

 

Computer mediated communication

Computer-mediated communication (CMC) is growing rapidly as a tool for global communication. Walther and Parks (2002) discern the internet as being a successful medium for social support and through computer mediated communication (CMC) online; 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 1995 with an estimated 26.4 million people using the Internet (MIDS, 1997); this figure was estimated to double every year. In 2008–09, three-quarters (74%) of people aged 15 years and over had used the internet in the previous 12 months (Australian Bureau of Statistics, 2011).

The most important factor contributing to the success of computer mediated commination is that it is not limited by geographical or temporal restrictions as might be the case for a face-to-face group (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.

 

 

 

 

 

 

 

 

 

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