Online social support for Complex Regional Pain Syndrome: A content analysis of support exchanges within a newly launched discussion forum

Smedley, Richard M.; Coulson, Neil; Gavin, Jeff; Rodham, Karen; Watts, Leon

doi:10.1016/j.chb.2015.04.040

Cited by 61 publications

(63 citation statements)

References 61 publications

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“…Online support communities (OSCs) are used to discuss health-related issues with like-minded individuals on the Internet [1], and can play an important role in the self-care and self-management of long-term health conditions [2][3][4].…”

Section: Introductionmentioning

confidence: 99%

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

Smedley

Coulson

2017

Patient Education and Counseling

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Objective: To identify and describe the activities performed by online support community moderators.Methods: A total of 790 messages were downloaded for analysis. Messages were written by 59 moderators from 6 forums that represent a diverse range of conditions (arthritis, complex regional pain syndrome, Crohn's disease, depression, diabetes and Huntington's disease).Results: Thematic analysis revealed four themes: supportive tasks involve providing help to members, moderators sharing experiences shows how they use forums to fulfil their own personal support needs, making announcements about new discoveries and upcoming events, and administrative tasks such as enforcing rules and deleting spam. Conclusion:These results are consistent with the helper-therapy principle and provide a new insight into the diverse and varied range of activities carried out by moderators.Practice implications: Moderators perform many roles, including using forums for their own support needs.

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Section: Introductionmentioning

confidence: 99%

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

Smedley

Coulson

2017

Patient Education and Counseling

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“…Online support groups mediate a different form of support than those that are face to face because they are mostly anonymous, are available 24 hours a day, and let people participate and respond in their own time (Smedley et al. ).…”

Section: Digital Healthmentioning

confidence: 99%

“…These are enabled through numerous technologies: patient-run websites, online forums, blogs, private chat technologies, Facebook pages, and Skype. Online support groups mediate a different form of support than those that are face to face because they are mostly anonymous, are available 24 hours a day, and let people participate and respond in their own time (Smedley et al 2015).…”

Section: Digital Healthmentioning

confidence: 99%

(In)Visibility Online: The Benefits of Online Patient Forums for People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS)

Phillips

Rees

2017

Med Anthropol Q

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Sufferers of medically unexplained conditions that are not observable in the clinic can experience multiple layers of invisibility: a lack of biomedical diagnosis; legal skepticism; political disinterest; and a loss of their prior social identity. For those with environmental sensitivities, this is compounded by literal hiddenness due to often being housebound. Drawing on an online survey of people with multiple chemical sensitivity, this article examines how the everyday experience of invisibility is mitigated by engaging with other patients online. Respondents used online forums to undertake various forms of "visibility work," including attempts to crystallize their suffering into something recognizable medically, legally, and politically, and to reconstruct an identity considered valid and deserving-although the therapeutic potential of online support was contingent on intra-group politics. This study demonstrates that online forums allow biomedicine's "invisible others" to struggle for alternative forms of recognition beyond the clinical gaze.

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“…On one hand, participants in ESGs express delight and relief when they encounter a physician who gives them what they want, whether this is a diagnostic label, desired medication, or therapeutic intervention. 19 On the contrary, the medical uncertainty that accompanies contested illnesses can prompt physicians to use treatments that are unlikely to be helpful and may even be unsafe.…”

Section: Patients Value Embodied Experience Over Medical Expertisementioning

confidence: 99%

“…9,14,18,19,24,25 ESGs have several features that make them appealing when compared to traditional, in-person groups. ESGs are not limited by geography or time; a message board posting by a member can be read weeks or even years later by members from other states or even other countries.…”

Section: Introductionmentioning

confidence: 99%

Electronic Support Groups: An Open Line of Communication in Contested Illness

2016

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Background Patients with functional somatic syndromes are often difficult to treat. The relationship between doctors and patients can be strained, which limits communication. Instead, patients often communicate with each other over the Internet in electronic support groups. Objective This perspective summarizes studies of patient-to-patient communication over the Internet and uses the concept of contested illness to provide insights into the experiences of patients with functional somatic disorders. Discussion Conflict between a patient and their physician is a key feature of functional somatic syndromes. Physicians and patients do not have a shared understanding or appreciation of the patient’s experiences. Patients with functional somatic syndromes often value their own embodied experience over medical knowledge. At the same time, they remain deeply invested in finding a “good doctor” who believes that the patient is suffering, agrees with their conception of the cause, and assents to the treatment as directed by the patient. Electronic support groups reinforce these beliefs. Conclusion Patients may benefit from a compromising, collaborative approach that is realistic about the limitations of medical knowledge. However, physicians should not engage in unsafe treatment practices. Electronic support groups exist for a wide range of illnesses and the issues that rise to the surface in functional somatic syndromes likely occur to some extent with almost every patient.

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Online social support for Complex Regional Pain Syndrome: A content analysis of support exchanges within a newly launched discussion forum

Cited by 61 publications

References 61 publications

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

A thematic analysis of messages posted by moderators within health-related asynchronous online support forums

(In)Visibility Online: The Benefits of Online Patient Forums for People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS)

Electronic Support Groups: An Open Line of Communication in Contested Illness

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