scholarly journals Addendum to the Acknowledgements: How Online Communities of People With Long-Term Conditions Function and Evolve: Network Analysis of the Structure and Dynamics of the Asthma UK and British Lung Foundation Online Communities (Preprint)

2018 ◽  
Author(s):  
Sagar Joglekar ◽  
Nishanth Sastry ◽  
Neil S Coulson ◽  
Stephanie JC Taylor ◽  
Anita Patel ◽  
...  
Keyword(s):  
Network Analysis ◽  
Online Communities ◽  
Long Term Conditions ◽  
Structure And Dynamics

scholarly journals How Online Communities of People With Long-Term Conditions Function and Evolve: Network Analysis of the Structure and Dynamics of the Asthma UK and British Lung Foundation Online Communities (Preprint)

2018 ◽  
Author(s):  
Sagar Joglekar ◽  
Nishanth Sastry ◽  
Neil S Coulson ◽  
Stephanie JC Taylor ◽  
Anita Patel ◽  
...  
Keyword(s):  
Health Care ◽  
Network Analysis ◽  
Online Communities ◽  
Self Management ◽  
Management Support ◽  
Long Term Conditions ◽  
Research Attention ◽  
Structure And Dynamics ◽  
Over Time

BACKGROUND Self-management support can improve health and reduce health care utilization by people with long-term conditions. Online communities for people with long-term conditions have the potential to influence health, usage of health care resources, and facilitate illness self-management. Only recently, however, has evidence been reported on how such communities function and evolve, and how they support self-management of long-term conditions in practice. OBJECTIVE The aim of this study is to gain a better understanding of the mechanisms underlying online self-management support systems by analyzing the structure and dynamics of the networks connecting users who write posts over time. METHODS We conducted a longitudinal network analysis of anonymized data from 2 patients’ online communities from the United Kingdom: the Asthma UK and the British Lung Foundation (BLF) communities in 2006-2016 and 2012-2016, respectively. RESULTS The number of users and activity grew steadily over time, reaching 3345 users and 32,780 posts in the Asthma UK community, and 19,837 users and 875,151 posts in the BLF community. People who wrote posts in the Asthma UK forum tended to write at an interval of 1-20 days and six months, while those in the BLF community wrote at an interval of two days. In both communities, most pairs of users could reach one another either directly or indirectly through other users. Those who wrote a disproportionally large number of posts (the superusers) represented 1% of the overall population of both Asthma UK and BLF communities and accounted for 32% and 49% of the posts, respectively. Sensitivity analysis showed that the removal of superusers would cause the communities to collapse. Thus, interactions were held together by very few superusers, who posted frequently and regularly, 65% of them at least every 1.7 days in the BLF community and 70% every 3.1 days in the Asthma UK community. Their posting activity indirectly facilitated tie formation between other users. Superusers were a constantly available resource, with a mean of 80 and 20 superusers active at any one time in the BLF and Asthma UK communities, respectively. Over time, the more active users became, the more likely they were to reply to other users’ posts rather than to write new ones, shifting from a help-seeking to a help-giving role. This might suggest that superusers were more likely to provide than to seek advice. CONCLUSIONS In this study, we uncover key structural properties related to the way users interact and sustain online health communities. Superusers’ engagement plays a fundamental sustaining role and deserves research attention. Further studies are needed to explore network determinants of the effectiveness of online engagement concerning health-related outcomes. In resource-constrained health care systems, scaling up online communities may offer a potentially accessible, wide-reaching and cost-effective intervention facilitating greater levels of self-management.

scholarly journals The use of social network analysis in social support and care: a systematic scoping review protocol

2022 ◽  
Vol 11 (1) ◽  
Author(s):  
Rosario Fernández-Peña ◽  
María-Antonia Ovalle-Perandones ◽  
Pilar Marqués-Sánchez ◽  
Carmen Ortego-Maté ◽  
Nestor Serrano-Fuentes
Keyword(s):  
Social Support ◽  
Social Network ◽  
Social Network Analysis ◽  
Network Analysis ◽  
Scoping Review ◽  
Disease Transmission ◽  
Future Research ◽  
Long Term Conditions ◽  
Scoping Reviews

Abstract Background In recent decades, the literature on Social Network Analysis and health has experienced a significant increase. Disease transmission, health behavior, organizational networks, social capital, and social support are among the different health areas where Social Network Analysis has been applied. The current epidemiological trend is characterized by a progressive increase in the population’s ageing and the incidence of long-term conditions. Thus, it seems relevant to highlight the importance of social support and care systems to guarantee the coverage of health and social needs within the context of acute illness, chronic disease, and disability for patients and their carers. Thus, the main aim is to identify, categorize, summarize, synthesize, and map existing knowledge, literature, and evidence about the use of Social Network Analysis to study social support and care in the context of illness and disability. Methods This scoping review will be conducted following Arksey and O'Malley's framework with adaptations from Levac et al. and Joanna Briggs Institute’s methodological guidance for conducting scoping reviews. We will search the following databases (from January 2000 onwards): PubMed, MEDLINE, Web of Science Core Collection, SCOPUS, CINAHL, PsycINFO, Cochrane Database of Systematic Reviews, PROSPERO, and DARE. Complementary searches will be conducted in selected relevant journals. Only articles related to social support or care in patients or caregivers in the context of acute illnesses, disabilities or long-term conditions will be considered eligible for inclusion. Two reviewers will screen all the citations, full-text articles, and abstract the data independently. A narrative synthesis will be provided with information presented in the main text and tables. Discussion The knowledge about the scientific evidence available in the literature, the methodological characteristics of the studies identified based on Social Network Analysis, and its main contributions will highlight the importance of health-related research's social and relational dimensions. These results will shed light on the importance of the structure and composition of social networks to provide social support and care and their impact on other health outcomes. It is anticipated that results may guide future research on network-based interventions that might be considered drivers to provide further knowledge in social support and care from a relational approach at the individual and community levels. Trial registration Open Science Framework https://osf.io/dqkb5.

The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs

Dementia ◽  
2021 ◽  
pp. 147130122110284
Author(s):  
Emma Wolverson ◽  
Caroline White ◽  
Rosie Dunn ◽  
Katie Cunnah ◽  
David Howe ◽  
...  
Keyword(s):  
Personal Information ◽  
Information Source ◽  
Website Design ◽  
Long Term Conditions ◽  
People With Dementia ◽  
Barriers To Use ◽  
Credible Information ◽  
Training And Support ◽  
Design And Methods

Background: Current policy emphasises the role of digital technologies in facilitating the management of long-term conditions. While digital resources have been developed for carers, there has been little attention to their development for people with dementia. The Caregiverspro-MMD website was developed as a joint resource for people with dementia and carers, delivering access to information, informal content, games and peer support. Research Design and Methods: This study explored the experiences of dyads consisting of people with dementia and carers of using the website. Interviews and focus groups were conducted with 43 participants. Findings: Thematic analysis identified 10 subthemes grouped under three superordinate themes which highlight participants’ experiences of and responses to the website functions; important aspects of the website design and delivery; and barriers to use. Discussion: Findings highlight the value of a credible information source which negated the need for arduous online searches, the pleasure associated with playing games and interacting with others online. However, participants were reluctant to share personal information online, preferring to create ‘informal content’ which celebrated everyday life, and were reluctant to ‘friend’ people online who they had not met in person. The importance of training and support to use the website was highlighted. Health problems, lack of interest or difficulties using technology, and time were all identified as barriers to use.

scholarly journals Are the needs of people with multiple long-term conditions being met? Evidence from the 2018 General Practice Patient Survey

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e041569
Author(s):  
Lucina Rolewicz ◽  
Eilís Keeble ◽  
Charlotte Paddison ◽  
Sarah Scobie
Keyword(s):  
General Practice ◽  
Unmet Need ◽  
Patient Survey ◽  
Secondary Outcome ◽  
Community Based ◽  
Long Term Conditions ◽  
Local Services ◽  
Community Based Services ◽  
Practice Patient

ObjectivesTo investigate individual, practice and area level variation in patient-reported unmet need among those with long-term conditions, in the context of general practice (GP) appointments and support from community-based services in England.DesignCross-sectional study using data from 199 150 survey responses.SettingPrimary care and community-based services.ParticipantsRespondents to the 2018 English General Practice Patient Survey with at least one long-term condition.Primary and secondary outcome measuresThe primary outcomes were the levels of unmet need in GP and local services among patients with multiple long-term conditions. Secondary outcomes were the proportion of variation explained by practice and area-level factors.ResultsThere was no relationship between needs being fully met in patients’ last practice appointment and number of long-term conditions once sociodemographic characteristics and health status were taken into account (5+conditions−OR=1.04, 95% CI 0.99 to 1.09), but there was a relationship for having enough support from local services to manage conditions (5+conditions−OR=0.84, 95% CI 0.80 to 0.88). Patients with multimorbidity that were younger, non-white or frail were less likely to have their needs fully met, both in GP and from local services. Differences between practices and local authorities explained minimal variation in unmet need.ConclusionsLevels of unmet need are high, particularly for support from community services to manage multiple conditions. Patients who could be targeted for support include people who feel socially isolated, and those who have difficulties with their day-to-day living. Younger patients and certain ethnic groups with multimorbidity are also more likely to have unmet needs. Increased personalisation and coordination of care among these groups may help in addressing their needs.

Sign in / Sign up

Export Citation Format

Share Document