Facebook Groups for the Management of Chronic Diseases

Partridge, Stephanie R.; Gallagher, Patrick; Freeman, Becky; Gallagher, Robyn

doi:10.2196/jmir.7558

Cited by 68 publications

(58 citation statements)

References 53 publications

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“…Online friendships provided a buffer against the isolating impacts of ill health [ 35 ]; this was of particular importance for participants with MND, for whom speech and mobility difficulties may combine to inhibit interactions in the offline world [ 2 ]. Conversations between friends were shared in the open forum, including within the spaces dedicated for specific groups, such as the monthly chemotherapy threads and the board for lesbian and bisexual women on the Breast Cancer Care forum, as well as in external spaces such as closed Facebook groups where privacy may foster even greater intimacy [ 58 ]. Although there is a risk that conversations within these private spaces might take valuable sharing away from the health forum [ 59 ], these alternative spaces were needed and supported practices in everyday life whereby people converse both within groups and more openly within private conversations.…”

Section: Discussionmentioning

confidence: 99%

Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis)

Hargreaves¹,

Bath²,

Duffin³

et al. 2018

J Med Internet Res

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BackgroundThe availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums.ObjectiveThe aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis.MethodsThis qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke’s six-phase approach and combined to triangulate the analysis.ResultsWe found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished.ConclusionsEmpathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support.

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Section: Discussionmentioning

confidence: 99%

Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis)

Hargreaves¹,

Bath²,

Duffin³

et al. 2018

J Med Internet Res

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“…Despite recognized downsides such as cyberbullying or delivery of misinformation, social media allows minority groups, for instance patients with chronic diseases, to interact with their peers and overcome isolation and helplessness [12]. Furthermore, online real-time social media platforms address some patients' concern regarding the costs and time-consumption of traditional in-person support programs [13]. The impact of social media in context of chronic diseases has been pointed out by several studies yielding varying results [14][15][16].…”

Section: Introductionmentioning

confidence: 99%

The impact of social media use on depression in multiple sclerosis patients

et al. 2020

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Social media is a powerful tool in providing information and support for minority groups such as patients with chronic diseases. We aimed to assess the link between using online social media and depression in a sample population of Iranian Multiple Sclerosis (MS) patients. In this cross-sectional study, a number of MS patients between 18-55 years were recruited. The Persian-language version of the Beck Depression Inventory-II (BDI-II-Persian) was used to screen MS patients for depression. We selected a cutoff point of 16 to identify depressed MS patients, who answered the self-administered questionnaire designed by the authors (the validity and reliability was confirmed before). Patients, whose interaction with social networks and communication tools was limited to < 1 h/day for < 5 times/month, were allocated as controls. A two-sided p < 0.05 was considered statistically significant. We compared the depression score between patients who used internet and social media (16.38 ± 8.35) with those who did not (25 ± 13.98). We found out there was a significant difference (p = 0.046). However, there were no significant differences between the type (r = 0.098, p = 0.513) and duration (r = − 0.102, p = 0.564) of social media with depression score. Also, based on a cutoff of 3 number of social media there was no significant difference in the status of depression among patients (p = 0.921). Based on the experience of patients, it is helpful to implement a source using online social media to facilitate patients' access to rehabilitation support and establish support groups with standard supervised information delivery.

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“…Not surprisingly, nurses are at the forefront of very innovative models of delivery, for which they are recognised internationally [28,29] Nurses are experts in identifying barriers and challenges in self-management and self-care for patients and take action by being in the vanguard of patient support strategies. Nurses have developed patient-education avatars, gamified applications, and incorporated trackers and engaged in social media in advance of other health disciplines [30][31][32].…”

Section: Leaders Advocates Innovators Educators and Morementioning

confidence: 99%

Reflecting on the Impact of Cardiovascular Nurses in Australia and New Zealand in the International Year of the Nurse and Midwife

Ferguson

Inglis

Gallagher

et al. 2020

Heart, Lung and Circulation

Self Cite

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To say 2020 has been difficult and challenging is an understatement. Signalled the International Year of the Nurse and Midwife, in the bicentenary of Florence Nightingale's birth, we thought there would be celebrations, filled with joy and time for reflection. 2020 has diverged far from this plan. Across the world, individuals, families, and communities have been devastated. Moreover, it is evident that our work as nurses is becoming more challenging during these unprecedented and uncertain times. COVID-19 has not only created illness and suffering but propelled the world into a serious global economic recession and laid bare cracks in society with many traditionally underserved and vulnerable people suffering more. During the COVID-19 pandemic, cardiovascular nurses have demonstrated strong, cohesive leadership through the writing of the Cardiac Society of Australia and New Zealand (CSANZ) COVID-19 Cardiovascular Nursing Care Consensus Statement (published in this journal), as well as working on the frontlines in our hospitals and communities [2]. The joint consensus statement was prepared by an expert writing group comprised of members of the CSANZ Cardiovascular Nursing Council and the CSANZ Interventional Nurses Council [3]. The statement is aimed to support cardiovascular nurses to reduce the risk of virus transmission whilst delivering care by adapting to novel models of care, and to educate and inform nurses of the cardiovascular implications of COVID-19. The rapid development of this Statement was impressive, and demonstrates the high levels of leadership, commitment, cohesion, collaboration, and engagement of these nurses. Expert cardiovascular nursing input was also sought for the CSANZ Statements on rural and remote cardiology [4], and the provision of secondary prevention and cardiovascular rehabilitation during the pandemic [5]. The Breadth of Cardiovascular Nursing Nurses comprise the single largest discipline cohort of registered healthcare professionals, and we often stand at the

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Facebook Groups for the Management of Chronic Diseases

Cited by 68 publications

References 53 publications

Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis)

Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis)

The impact of social media use on depression in multiple sclerosis patients

Reflecting on the Impact of Cardiovascular Nurses in Australia and New Zealand in the International Year of the Nurse and Midwife

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