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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
Long-term condition self-management support in online communities. A meta-synthesis of qualitative papers
Background: Recent years have seen an exponential increase in people with a long-term condition (LTC) using the internet for information and support. Prior research has examined support for LTC self-management (SM) through the provision of illness, every day 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 mobilisation of an online illness ‘workforce’.

Objectives: To understand the negotiation of LTC illness work in patient online communities and how such work may assist the SM of LTCs in daily life.

Methods: A systematic search of qualitative papers was undertaken using AMED, CINAHL, Cochrane Database, Delphis, Embase, International Bibliography of Social Sciences, Medline, PsychInfo, Scopus, Sociological Abstracts and Web of Science for papers published since 2004. 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities in those with a LTC. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis.

Results: The main themes identified in relation to the negotiation of Self-Management Support (SMS) were: 1) Redressing offline experiential information and knowledge deficits; 2) The influence of modelling and learning behaviours from others on SM; 3) Engagement which validates illness and negates offline frustrations; 4) Tie formation and community building; 5) Narrative expression and cathartic release; 6) Dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for SMS in patient online communities were identified. These were collective knowledge and identification through lived experience; support, information and engagement through readily accessible gifting relationships; sociability that extends beyond illness; and online disinhibition as a facilitator in the negotiation of SMS.

Conclusion: Social ties forged in online spaces provide the bases for performing relevant SM work that can improve an individual’s illness experience, tackling aspects of SM that are particularly difficult to meet offline. Membership of online groups can provide those living with a LTC with ready access to a SMS 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, since information and support is seemingly gifted to the community by its members.
social media, patient online communities, long-term conditions, chronic disease, self-management, illness work, social networks, qualitative meta-synthesis
1438-8871
1-17
Allen, C.
b7924cd0-80a6-4379-9915-720e0a124e78
Vassilev, I.
d76a5531-4ddc-4eb2-909b-a2a1068f05f3
Kennedy, A.
e059c1c7-d6d0-41c8-95e1-95e5273b07f8
Rogers, A.
105eeebc-1899-4850-950e-385a51738eb7
Allen, C.
b7924cd0-80a6-4379-9915-720e0a124e78
Vassilev, I.
d76a5531-4ddc-4eb2-909b-a2a1068f05f3
Kennedy, A.
e059c1c7-d6d0-41c8-95e1-95e5273b07f8
Rogers, A.
105eeebc-1899-4850-950e-385a51738eb7

Allen, C., Vassilev, I., Kennedy, A. and Rogers, A. (2016) Long-term condition self-management support in online communities. A meta-synthesis of qualitative papers. [in special issue: Peer-to-peer support and online communities] Journal of Medical Internet Research, 18 (3), 1-17. (doi:10.2196/jmir.5260).

Record type: Article

Abstract

Background: Recent years have seen an exponential increase in people with a long-term condition (LTC) using the internet for information and support. Prior research has examined support for LTC self-management (SM) through the provision of illness, every day 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 mobilisation of an online illness ‘workforce’.

Objectives: To understand the negotiation of LTC illness work in patient online communities and how such work may assist the SM of LTCs in daily life.

Methods: A systematic search of qualitative papers was undertaken using AMED, CINAHL, Cochrane Database, Delphis, Embase, International Bibliography of Social Sciences, Medline, PsychInfo, Scopus, Sociological Abstracts and Web of Science for papers published since 2004. 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities in those with a LTC. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis.

Results: The main themes identified in relation to the negotiation of Self-Management Support (SMS) were: 1) Redressing offline experiential information and knowledge deficits; 2) The influence of modelling and learning behaviours from others on SM; 3) Engagement which validates illness and negates offline frustrations; 4) Tie formation and community building; 5) Narrative expression and cathartic release; 6) Dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for SMS in patient online communities were identified. These were collective knowledge and identification through lived experience; support, information and engagement through readily accessible gifting relationships; sociability that extends beyond illness; and online disinhibition as a facilitator in the negotiation of SMS.

Conclusion: Social ties forged in online spaces provide the bases for performing relevant SM work that can improve an individual’s illness experience, tackling aspects of SM that are particularly difficult to meet offline. Membership of online groups can provide those living with a LTC with ready access to a SMS 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, since information and support is seemingly gifted to the community by its members.

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More information

Accepted/In Press date: 2 February 2016
Published date: 10 March 2016
Keywords: social media, patient online communities, long-term conditions, chronic disease, self-management, illness work, social networks, qualitative meta-synthesis
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 389419
URI: http://eprints.soton.ac.uk/id/eprint/389419
ISSN: 1438-8871
PURE UUID: 4278417b-0641-4fe7-a11f-4377f2531aea
ORCID for C. Allen: ORCID iD orcid.org/0000-0002-1296-8989
ORCID for A. Kennedy: ORCID iD orcid.org/0000-0003-4570-9104

Catalogue record

Date deposited: 07 Mar 2016 14:04
Last modified: 17 Dec 2019 01:37

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