PDF download: Online communities play a pivotal role in mitigating the psychological distress for people on a disease journey – Sarah WILEY
Abstract:
In recent decades, the significance of social media and online communities has soared, becoming integral to our daily existence. This conference paper argues that these online communities are essential resources for alleviating psychological distress for people on a disease journey. It explores how online communities provide crucial support to individuals and those surrounding them, offering a safe space for emotional expression and shared experiences. Additionally, the paper demonstrates how these platforms facilitate timely access to disease-specific resources, foster solidarity, empowerment, and resilience, and help reduce stigma.
Introduction:
During recent decades, the significance of social media and online communities in individuals’ lives has increased exponentially. With a staggering 4.88 billion users worldwide, spending, on average, over six hours daily online (Social Media Perth, 2024), these platforms have become an intrinsic part of daily existence. This paper argues that online communities serve as crucial resources for reducing psychological distress for individuals navigating the complexities of a disease journey. Explicitly, it will explore how online communities offer vital support to individuals and their families, providing them with a safe space to access emotional support and share experiences. Furthermore, this paper will demonstrate that these platforms can facilitate access to disease-specific resources in a timely fashion, foster solidarity, empowerment, and resilience, and reduce associated stigma, demonstrating that online communities play a pivotal role in mitigating psychological distress. In this paper, the term disease journey refers to the time after diagnosis, until the end of the disease. And includes the person diagnosed and those around them involved in their care and support, including family members and carers, with a personal link to the person living with the disease.
Discussion:
In recent decades, online communities have evolved, transforming from rudimentary discussion forums into sophisticated platforms that play a central role in shaping social interactions and support networks (Delanty, 2018). An online community is ostensibly the same as an offline one, with traditional geographical boundaries blurred. However, much like the front garden talk of many suburban households, these communities are a place to share knowledge and satisfy a social need, albeit without a limit on how many people can connect. Some scholars argue that traditional communities were never as localised as this might suggest though (Hampton & Wellman, 2018), but this paper will argue that online communities provide a third place to connect outside home and work environments (Fong et al., 2021). Third places can also provide a space where people who feel socially marginalised, whether for health or physical reasons, outside of the online space, can connect and find their sense of community (Littman, 2022). These online open networks make way for more diversity than often seen in their offline versions (Hampton & Wellman, 2018). Early iterations of online communities included bulletin boards, chatrooms, and forums where people could share information. However, this form of online interaction was not in real-time, and the rise of Social Networking Sites (SNS) revolutionised online communities. SixDegrees.com, launched in 1997, is considered to be the first SNS and inspired the sites we know today (Boyd & Ellison, 2007). Still, it was not until 2007 when the hashtag was used for the first time, that online communities were able to grow beyond the user’s existing sphere of influence. Hashtags allow users to find the information they are looking for easily and, in turn, find people talking about the same issues. In the case of online communities for people on a disease journey, hashtags allow for the formation of disease-specific groups (Katz et al., 2016; Pemmaraju et al., 2016). This paper is more concerned with online communities on platforms like Facebook. Facebook’s search function and algorithms have simplified how people can find the information and online communities (groups) they seek (Facebook, n.d.). When a group is found, Facebook suggests similar groups, and through experimentation and connection within these groups, the consumer can decide which one to stay in. Facebook also has other features that are helpful for online communities to thrive; group administrators can set questions that must be answered before a person can join, which can help filter out people with negative intentions. Facebook introduced anonymous posting in 2021 (Ahmed, 2021), which supports posting without the need to identify oneself. I will discuss the value of this feature later in the paper. It is also important to note that there are many other online platforms that people go to find information and to connect with other people on a similar journey (Lin & Kishore, 2021), such as Reddit and X. I argue that this allows consumers of the information to use the platform most suited to their needs and everyday usage, rather than having a change to an unfamiliar platform. Online communities have increased the touchpoints people can have when looking for support and information at a time of distress or confusion. This paper agues that without these spaces the psychological distress for people on a disease journey could be much greater.
Psychological distress is applied to a combination of symptoms, including depression and anxiety, and is considered both an indicator and outcome of diminished mental health (Drapeau et al., 2012). The psychological distress that a person on a disease journey can experience is widely documented (Banks, 2010; Barry et al., 2019; Tareke et al., 2022), and there is considerable research into the power of online communities in supporting a reduction in this distress (DeBlaere et al., 2014; Jackson, 2017; O’Connell et al., 2021), but there is limited literature specifically relating to people on a disease journey. Kaasa et al. found that 69% of people living with an end-stage cancer diagnosis in their study, reported a high level of psychological distress and social isolation (Kassa et al., 1993) and this is backed up by Byles et al., whose findings show that there are true associations between disease and psychological distress (Byles et al., 2014). Their findings conclude that public health policies should be developed to understand further this complex area and better fund mechanisms to support people living or supporting someone with a life-limiting disease and experiencing psychological distress (Byles et al., 2014).
Psychosocial supports are non-therapeutic interventions that address both psychological and social needs. Organisations increasingly understand the need to address these issues, and one way is to facilitate peer support for people on a disease journey (Aoun et al., 2022); this can be achieved virtually with online communities. Disease-specific online communities can provide a space for people to feel emotionally safe. Emotional support can be achieved in several ways, including feeling connected and not alone, fostering healthy emotional attachment (Wu & Bernardi, 2021), and the anonymity that some online communities afford (Deas et al., 2023). Anonymity allows users to discuss personal issues they might not be ready to be identified with yet. In the motor neurone disease support (MND) group, I am linked to (MND (Motor Neurone Disease) Support and Information Group, 2024) there are many posts where people choose to post anonymously as they do not want family members to find out their diagnosis yet, or they are unable to accept their diagnosis and being anonymous makes this less real. In addition, it is my experience that carers post anonymously so they can ask questions about dealing with the emotional burden of supporting someone with MND without being identified. In the case of MND, which is classified as a rare disease, with a prevalence in Australia of approximately 8.7/100,000 Australians (Aoun et al., 2021), it can be hard to find support locally from people on a similar journey. In this case, online communities are vital for emotional support and shared experiences from people with lived experience of the disease, in turn helping to mitigate the psychological distress for people.
We are in an age where immediate access to information has become an expectation rather than a luxury, which can be attributed to the phenomena of Dr Google (Lee et al., 2015) and the new Dr ChatGPT (Zuccon & Koopman, 2023), there is a requirement from consumers that they will be able to find information at any time of the day or night from wherever they are in the world. Google and ChatGPT are recognised as popular sources of information but the immediate need for knowledge is increasingly considered dangerous due to the misleading and incomplete information provided (Van Bulck et al., 2024). This paper argues that online communities for people with the same condition mitigates this issue by the sharing of knowledge from people who have been on the journey longer and, therefore, have lived experience. This is not foolproof, but knowledge from lived experience will always be more appropriate than a computer system, although not to replace direction from a healthcare professional. In my experience of working closely with people living with motor neurone disease, I have found online support groups to be invaluable for people when questions arise outside the office hours of the charity, leading to a lessening of the stress of the unknown, often in the dark hours of the night. All answers received can be corroborated, or not, by professionals in the field at an appropriate time, alleviating further the danger of misinformation and echo chambers (Hampton & Wellman, 2018). This paper argues that this access to information plays a pivotal role in supporting the psychological distress experienced by people on a disease journey.
In addition to sharing information, online communities foster individuals’ solidarity, empowerment, and resilience on a disease journey by facilitating a space where belonging and camaraderie can occur. Walsh and Al Achkar support this in their 2021 paper researching online support communities for lung cancer survivors (Walsh & Al Achkar, 2021). The research showed that participants in the online community felt a sense of camaraderie through asking questions, responding to requests for information and, in some cases, simply reading others’ posts (Walsh & Al Achkar, 2021). This is further supported by Liu et al., whose research also found that online communities positively affect users’ sense of belonging and camaraderie (Liu et al., 2020). Online communities can also empower people on a disease journey to become active participants in their healthcare journey (Hickmann et al., 2022; Pekonen et al., 2020). This, in turn, helps to lower costs, drive patient/ healthcare interactions, provide satisfaction and improve overall well-being (Hickmann et al., 2022). Disability and media activism plays a crucial role in the acceptance of disability in society (Ellis, 2018). Online communities not only play a part in providing a space for this activism but also for stories to be heard which are then taken to the mainstream media. This empowerment is crucial for people on a disease journey to feel like they are head and in turn reduce the psychological distress felt.
Stigma is well documented as having negative effects on psychological wellbeing (Major, 2006; Markowitz, 1998; Patel et al., 2023), but online communities can help to mitigate the negative effects. Link and Phelan suggest there are “six necessary conditions for stigma, namely labelled differences, stereotypes, separation, status loss and discrimination, power, and emotional reaction” (Link & Phelan, 2001, as cited in Andersen et al., 2022, p. 848). Stigma, whether perceived or self, can be as debilitating as the disease itself. As discussed earlier, online communities provide a space for people living with a disease to interact with others on a similar journey. In the case of motor neurone disease, which, as mentioned earlier, is a rare disease, finding a space to meet others virtually who understand can be very cathartic. MND often causes a person to lose their ability to speak; therefore, communication is through a computer or another means. Losing this ability to communicate as one once could, can lead to feeling stigmatised, particularly when people do not know how to communicate with someone who cannot talk. There is plentiful research into how people living with a mental illness or those from marginalised communities can help to reduce their perceived stigma online (Godard, 2021; Moore et al., 2017; Morgan et al., 2022), but little concerning people on a disease journey. Again, there is plenty of research into the link between being diagnosed with a life-ending disease like motor neurone disease, associated stigma, and psychological distress (Leigh et al., 2021; Mackay, 2023; Simpson et al., 2020) but little linking the importance of online communities in tackling this. This paper argues that these disease-specific online communities are vital to reducing stigma through discussion, belonging and acceptance and, in turn, supporting the reduction in psychological distress.
Conclusion:
Throughout this paper, I have shown that online communities provide a space for individuals to access emotional support, enable the sharing of experiences and that these platforms can facilitate access to disease-specific resources in a timely fashion, foster solidarity, empowerment, and resilience, and reduce the perceived stigma perpetuated by the disease. If all this is achieved, then there can be a reduction in the psychological distress experienced by people on a disease journey. There is much more work that can be undertaken in this area. However, my research shows that accessing support online can allow a person to concentrate on the disease, not the associated secondary effects and as online communities are increasingly accessible to the general population, not just those who have grown up with smartphones, this facilitates an all-ages approach to psychosocial support which can help alleviate the pressure on a struggling healthcare system.
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