Abstract This literature review aims to look at the social support model and assess the impact of online social support on health outcomes of those with chronic health conditions and diseases ” physical or mental – who use the internet for social support. The exploration of the way individuals who are dealing with health conditions and diseases is important to understand since there are so many people who now use the internet and who are dealing with chronic disease and health conditions. Literature has long evidenced utilization of the social support model and that being able to effectively mobilize social support following a stressful life event, such as being diagnosed with a chronic condition or disease, is central to a person’s health and well-being.
It is therefore important to examine the social support provided by the internet and its impact on health given the popularity and wide-spread use of the internet in today’s society. The large literature linkage between social support and health outcomes may or may not translate into the same for support received via the internet vs.
the more traditional face-to-face support which has been well documented.IntroductionThis literature review aims to assess the social support model and the impact on health outcomes of those with health conditions and diseases” physical or mental – who use the internet for social support. We have seen in earlier years the literature’s evidence of the role of social support in someone’s life who has experienced a stressful life event (Goldsmith, 2004; Uchino, 2004).
Being diagnosed with a chronic disease or health condition would likely be considered stressful for many individuals. The benefits of social support have been identified within multiple populations and in a variety of environments and contexts and have been found to help people better cope with chronic health conditions and diseases promoting positive psychological and physical health outcomes (Cohen & McKay, 1984; Goldsmith, 2004; Thoits, 2011).With the growth of the internet over the last several decades, it is not unexpected that people turn to online resources for various needs, including that for social support. It was reported that 60% of adult Internet users in 2011 reported that they engaged in online activities specific to health issues (Fox, 2011). The National Cancer Institute (2013) estimates that 15% of all adult Americans used a health-related peer support community during 2012. The literature provides evidence that the internet has grown from several thousand support groups and communities as of the late 1990’s to hundreds of thousands of groups and communities by 2012 (National Cancer Institute, 2013; Fox, 2012; Koch-Weser, Bradshaw, Gualtieri, & Gallagher, 2010; Wright & Bell, 2003).Even though there is a lot of relatively recent research in the area of internet and social support, there is more to be done in the area of predispositions of online support group participants, social support communication processes, relationships among online supporters, and important health outcomes (Wright, 2016). This literature review assesses findings on health outcomes for those who use the internet for online support and who have chronic health conditions and diseases.This review is important to public health professionals, because it adds to the ongoing dialogue about how people who have chronic health conditions or diseases use the internet for social support and its impact on their longer-term health, in this high-tech world where in 2012, 117 million people had one or more chronic health issues (Ward et al., 2014). This literature review will explore both chronic physical and mental illnesses and conditions in those who use the internet for social support, and will assess health outcomes of these individuals. Knowing whether these individuals experience better health outcomes as a result of their online support efforts will help public health professionals identify opportunities for those who are not yet using online support communities but who might benefit, as well as to identify ways to continue to offer meaningful support to those who do choose to get social support online. It will be interesting to see if the earlier findings, found over the years and in numerous studies, for more traditional face-to-face support will hold true for support received via the internet in this population. Literature ReviewMost of what can be found in the literature researching physical and mental health outcomes of those with chronic health illnesses and conditions who utilize online support communities, centers on positive outcomes, with very limited study on negative health outcomes. Chronic illnesses are ongoing in nature and may have periods of stability and worsening. While there are numerous chronic illnesses and conditions that may occur ” both physical and mental – the uncertainty associated with a diagnosis can create stress. As noted earlier, the benefits of social support have been previously identified in helping people better cope with chronic health conditions and diseases promoting positive psychological and physical health outcomes (Cohen & McKay, 1984; Goldsmith, 2004; Thoits, 2011). In the case of chronic mental health conditions and diseases, there is a negative stigma associated with mental illness in todays society making it hard for those diagnosed to feel heard and understood, also creating a need for social support. With social support already being identified as helping people better cope with chronic health conditions and diseases ” both physical and mental – how does this translate into support received online via the internet? The internet can provide unlimited information about a myriad of health concerns and conditions which may be important in helping those who suffer from these health issues better cope (Wright & Bell, 2003). While people may use offline support, many utilize both offline and online social support networks (Velgar & Pelzer, 2009). But again, what are the health outcomes of those who seek social support online? The existing literature in this area is very fragmented. The physical health outcome measures used are often expressed in unreliable ways such as self-reporting, and using biological measures that are variable in interpretation (Wright, 2016) and the volume of research of both negative and positive effects is very limited, for both mental and physical health measures and outcomes. Some studies are specific to physical outcomes while others are psychosocial. Better identification of outcome measures as well as integration of the physical with the psychosocial would be beneficial (Wright, 2016).Physical Health Outcomes:Researchers have documented various health outcomes associated with individuals who participate in online social support via online support communities. Lu et al. (2014) cite multiple studies of positive health outcomes – both mental and physical diseases and conditions – of individuals participating in online support groups. The authors cite research showing positive health outcomes for individuals suffering from bulimia and binge eating disorders, social phobia, extensive family caregiving, panic disorder, overweight, poor diet, depression, and chronic headache, An example of one of these many studies documenting positive health outcomes is that of an online support community for people with diabetes by Turner, Robinson, Tian, Neustadtrl, Angelus, Russell, Mun, and Levine (2013) who found improved blood sugar control in participating individuals as a result of receiving positive emotional support messages. In another example, studies of female breast cancer patients have shown receiving positive social support messages is associated with lower breast cancer concerns (Kim et. al, 2012, Yoo et al., 2014). A study by Yan in 2018 which focused on an online weight loss community found both positive and negative outcomes for those participating in an online support community with several factors influencing those outcomes. Dynamic influences, match between needed and received support type and mismatches of support were found to influence whether weight-loss outcomes were positive or negative. Specifically, the researchers indicate our analysis suggests that the effectiveness of providing support can be distinguished from receiving support in reshaping individuals’ health behavior, and that offering a support type other than what the recipient needs or providing more support than what a recipient needs will have a harmful influence. The findings may or may not translate to other diseases and conditions and additional research would be needed to assess whether these factors lead to positive or negative health outcomes with other disease states and conditions. As in the example above with the Yan study, there are multiple variables at play and the question of are there positive or negative health outcomes for online support group users is not easily answered without looking at a multitude of variables. Regardless of disease or condition, we do know from multiple studies including the one cited above that there are multiple factors involved in whether positive or negative outcomes may occur for those seeking online support. Another example of this is the study by Fullwood, C. et al. (2019) that looks at the reasons why individuals may choose to actively participate in an online community versus taking a more passive role (i.e., lurking). The paper cites previous studies which have previously determined that those who are more active contributors fare better in terms of positive health outcomes, thus the need for better understanding of peoples’ online behaviors. There are numerous studies on characteristics of users of online support groups, prevalence of use by disease and condition, participation levels of users as indicated above, and other important variables. While it is important to look at health outcomes, it makes sense that numerous variables and factors cited above were and continue to be researched as variables which impact health outcomes.While much research has been done on the users of online support communities for chronic health conditions and diseases, as well as the characteristics of users, prevalence of users by condition or disease, and other user variables, there has been documented research on positive health outcomes for multiple chronic diseases and conditions. There has been much les similar documented research on negative health outcomes and there is a great need for more research in this area.Mental Health Outcomes:Some early studies have demonstrated positive outcomes with traditional social support and the ability to cope (improved psychological health), and to make stressors appear less significant and more manageable and therefore improved mood (Aneshensel & Stone, 1982, Cobb 1976). It makes sense to examine whether online social support has the same effects on mental health. Looking at other measures of mental health, one study found that therapeutic writing about thoughts and feelings in an online community alleviated depression and loneliness, and reduced pain and stress (Campbell & Pennebaker, 2003). Other research indicates that online support groups and communities reduce the sense of isolation felt by those with chronic diseases and conditions (Holbrey & Colson, 2013; Vilhauer, 2009). As noted earlier, Lu et al. (2014) cited numerous studies that demonstrated positive outcomes not only for physical diseases and conditions, but for mental diseases and conditions as well. Earlier studies in 2004 (Eysenback et al.) included a systematic review ” 38 studies – of the effects of online peer-to-peer interactions and found that given the large number of unmoderated peer-to-peer groups online, more research is needed to determine under which conditions and for whom electronic support groups are effective and how to best maximize effectiveness ” to possibly lead to better health outcomes. Most peer-to-peer communities have been evaluated only in conjunction with other interventions or involvement with health professionals. While there have been additional studies since that publication in 2004, there is still much needed research not just on health outcomes, but on other variables impacting effectiveness. As cited in the introduction of this paper, as of 2012 there are hundreds of thousands of support groups, certainly many more than in 2004 when this article was published (National Cancer Institute, 2013; Fox, 2012; Koch-Weser, Bradshaw, Gualtieri, & Gallagher, 2010; Wright & Bell, 2003). The limited research available appears to be mixed in terms of mental health outcomes and whether there are more positive or negative health effects for those receiving online social support who are dealing with chronic health conditions and diseases. Further exploration would be beneficial in understanding the potential negative impacts of online social support. Reviewing the literature brings us back to the question of the health impact of the use of the internet for online support, both positive and negative, for those with chronic physical and mental conditions and diseases. Much more research is needed to address this specific question and it is possible that the answer may vary depending on the chronic disease or condition impacting an individual and what specific variables are at play. As noted earlier, most of what can be found in the literature researching physical and mental health outcomes of those with chronic health illnesses and conditions who utilize online support communities, centers on positive outcomes, with limited research on negative outcomes. Conclusion Research has been documented for decades examining utilization of the social support model and that being able to effectively mobilize social support following a stressful life event, such as being diagnosed with a chronic condition or disease, is central to a person’s health and well-being. With the advent of the technology and widespread use of the internet, researchers are now interested in the social support that is available online and its impact on people including health effects. While there has been a lot of research on online social support in general, more research is needed on specific health outcomes associated with various chronic diseases and conditions, particularly negative outcomes where there is limited research. While there has been some research of predispositions of online support group participants, social support communication processes, and relationships among online participants serving in support roles, additional study is needed in these areas as well given that studies have been limited and somewhat fragmented. It appears that the possible negative health outcomes of using online support groups and communities is an understudied area where additional work is needed to determine how these groups might contribute towards negative health outcomes. Better identification of outcome measures as well as integration of the physical with the psychosocial would be beneficial in future research as well. It appears in the literature, much like in every day practice, mental health and physical health are not always looked at collaboratively, though more and more we are seeing that the two are very closely inter-related.