A Virtual Community

Matura, Lea Ann; McDonough, Annette; Aglietti, Lianne M.; Herzog, Jessica L.; Gallant, Kelly A.

doi:10.1177/1054773812462867

Cited by 22 publications

(20 citation statements)

References 36 publications

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“…Having access to the online community made members feel less alone and provided a reference for what was a normal illness experience [ 17 , 24 , 25 , 29 , 31 , 36 , 40 ]. Members, who often lacked solidarity offline, were able to build a collection of symptoms into a shared identity [ 24 , 25 , 31 , 33 , 34 ]. Offline, members found it difficult to get a real understanding from friends and family and were able to use these online spaces to express these frustrations with a network of people who seemingly understood the challenging nature of self-managing their illness [ 25 , 29 , 34 , 36 , 37 , 40 ].…”

Section: Resultsmentioning

confidence: 99%

“…The sharing of condition narratives enabled members the opportunity to reevaluate their situation through lateral and downward social comparison. Being able to see how others coped with their condition reassured members that they could manage their condition through education, adjustment, adaptation, and acceptance [ 17 , 29 , 33 , 35 , 40 , 42 ].…”

Section: Resultsmentioning

confidence: 99%

“…Additionally distributed knowledge and information in these communities constituted a by-product of the continued engagement of network members [ 33 , 34 ]. Communities generated value through members “cocreating their own service encounter” [ 34 ] (p.167).…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

Allen¹,

Vassilev²,

Kennedy³

et al. 2016

J Med Internet Res

157

179

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BackgroundRecent years have seen an exponential increase in people with long-term conditions using the Internet for information and support. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. However, less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness “workforce.”ObjectiveThe aim was to understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions in daily life.MethodsA systematic search of qualitative papers was undertaken using various online databases for articles published since 2004. A total of 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities for those with a long-term condition. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis.ResultsThe main themes identified in relation to the negotiation of self-management support were (1) redressing offline experiential information and knowledge deficits, (2) the influence of modeling and learning behaviors from others on self-management, (3) engagement that validates illness and negates offline frustrations, (4) tie formation and community building, (5) narrative expression and cathartic release, and (6) dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified. These were (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-management support.ConclusionsSocial ties forged in online spaces provide the basis for performing relevant self-management work that can improve an individual’s illness experience, tackling aspects of self-management that are particularly difficult to meet offline. Membership in online groups can provide those living with a long-term condition with ready access to a self-management support illness workforce and illness and emotional support. The substitutability of offline illness work may be particularly important to those whose access to support offline is either limited or absent. Furthermore, such resources require little negotiation online because information and support is seemingly gifted to the community by its members.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

Allen¹,

Vassilev²,

Kennedy³

et al. 2016

J Med Internet Res

157

179

View full text Add to dashboard Cite

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“… 43 Patients with PAH or CTEPH are entitled to receive accurate but encouraging information, and healthcare professionals must also communicate their prognosis and, at the appropriate time, provide an opportunity to discuss end-of-life issues. 39 Matura et al 44 found that patients use online peer support on an internet-based PAH discussion board when they seek guidelines and wish to confirm information about PAH or CTEPH. Patients who have experience with PAH or CTEPH could be effective counselors, but the healthcare professionals must also take responsibility for this.…”

Section: Discussionmentioning

confidence: 99%

Perceptions of Received Information, Social Support, and Coping in Patients with Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension

Ivarsson

Ekmehag

Hesselstrand

et al. 2014

Clin Med Insights Circ Respir Pulm Med

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Patients with a life-limiting diagnosis of pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) need disease-specific information, ability to cope, and functioning social networks. This cohort study investigated the experiences of PAH and CTEPH patients who received information about their diagnosis, treatment, and management, in addition to coping and social support. Sixty-eight adult patients (mean ± SD, age 67 ± 14; 66% women) were included. A total of 54% of the patients wanted more information. Patients received information mostly in areas concerning medical test procedures, the diagnosis, disease severity, possible disease causes, and how to manage their disease. Coping ability was significantly better in patients who were satisfied with the received information (P = 0.0045). The information given to PAH or CTEPH patients and their communication with healthcare professionals can be greatly improved. Gaps in information and misunderstandings can be avoided by working in cooperation with the patients, their relatives, and within the PAH team.

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“…Understanding the patients’ knowledge about their disease, their inner feelings, and their external, practical needs during treatment remain important to the patients’ QOL. The qualitative research that has been conducted to date exploring the experience of having PH 7 – 12 is limited; to our knowledge, no qualitative study of the experience of patients with PH receiving treatment in an Asian setting has been published to date. This study aimed to explore and understand the experiences of patients with PH in Taiwan and also attempted to interpret patients’ experience and needs from a psychiatric perspective, in order to facilitate the formulation of a more specific psychiatric intervention model that meets the needs of patients with PH in the future.…”

Section: Introductionmentioning

confidence: 99%

Exploring the experiences and psychosocial stresses of Taiwanese patients with pulmonary hypertension: a qualitative interview study

Chiang

Couper

et al. 2018

Pulm. circ.

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About half of all patients with pulmonary hypertension (PH) experience psychological and emotional disturbances that affect their quality of life (QOL). There is a lack of studies exploring how psychiatric professionals can provide specific and effective mental health treatment to patients with PH. This study aimed to explore and understand the treatment experiences of patients with PH in Taiwan. We employed an exploratory qualitative design involving interviews with 17 patients with PH who were treated at Kaohsiung Veterans General Hospital in Taiwan. Participants were interviewed by a psychiatrist; the interviews were audiotaped and transcribed for thematic analysis by two researchers. We corroborate earlier findings showing that patients who have the rare disease PH often experience psychological or emotional disturbances throughout the treatment process. This study explored a model for psychiatric intervention based on patients’ experience of having PH. We find that assessing and strengthening links to external resources can enhance patients’ long-term coping abilities, and thereby help reduce their psychological and emotional disturbances and improve their QOL.

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A Virtual Community

Cited by 22 publications

References 36 publications

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

Perceptions of Received Information, Social Support, and Coping in Patients with Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension

Exploring the experiences and psychosocial stresses of Taiwanese patients with pulmonary hypertension: a qualitative interview study

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