scholarly journals Parents managing childhood long-term conditions: longitudinal research is needed on online forums as sources of peer-to-peer information

2017 ◽  
Vol 176 (6) ◽  
pp. 1430-1431 ◽  
Author(s):  
V. Swallow
Keyword(s):  
Longitudinal Research ◽  
Peer To Peer ◽  
Online Forums ◽  
Long Term Conditions

The Experience of Blogging about Visible and Long-term Skin Conditions: an Interpretative Phenomenological Analysis (Preprint)

2021 ◽  
Author(s):  
Selina Kaur Tour ◽  
Andrew Thompson ◽  
Ruth A Howard ◽  
Michael Larkin
Keyword(s):  
Peer Support ◽  
Interpretative Phenomenological Analysis ◽  
Psychosocial Support ◽  
Psychosocial Interventions ◽  
Phenomenological Analysis ◽  
Online Forums ◽  
Long Term Conditions ◽  
Chronic Skin ◽  
Skin Conditions

BACKGROUND Skin conditions can detract from people’s quality of life, much as conditions such as cancer, chronic pain and depression. When skin conditions are visible, this can lead to risk of stigmatisation. It is acknowledged that there is a lack of available psychosocial support for people living with chronic skin conditions. One way in which individuals with long-term conditions are self-managing and providing peer support is through blogging and exchanging information online. To date, no research has specifically investigated how individuals with skin conditions experience of using blogging for self-management. OBJECTIVE To explore the experiences of blogging about visible, long-term skin conditions. METHODS Systematic blog searching and a short survey were used for recruitment. Four participants took part in email interviews which were analysed using interpretative phenomenological analysis (IPA). Skin conditions included alopecia, psoriasis and hirsutism. The content of these individuals’ blogs was also analysed using a qualitative template method derived from the IPA analysis. RESULTS The interviews and accounts revealed a clear sense of uncertainty about the course of the skin conditions. This appeared to be associated with feelings of distress and isolation, searching for treatments, and ultimately a sense of defeat. The data revealed that blogging provided a space where this sense of defeat was managed and challenged. Posting online facilitated connection with others and enabled support networks to be established which assisting in challenging the feelings of isolation experienced. The data demonstrates the important role that blogging played for these participants in developing a sense of acceptance of their condition. CONCLUSIONS Blogging may provide a way for individuals to self-manage the distress associated with visible skin conditions. It may provide similar benefits as those known to be derived from emotional disclosure occurring during writing, but with the addition of an added peer support dimension. Blogging has occurred naturalistically on online forums and this study demonstrates how this form of interaction might warrant adaptation for use with online psychosocial interventions for people living with skin conditions. CLINICALTRIAL NA

scholarly journals Tarzan and chain: exploring the ICO jungle and evaluating design archetypes

2021 ◽  
Author(s):  
Nina M. Bachmann ◽  
Benedict Drasch ◽  
Gilbert Fridgen ◽  
Michael Miksch ◽  
Ferdinand Regner ◽  
...  
Keyword(s):  
Cluster Analysis ◽  
Market Performance ◽  
Peer To Peer ◽  
Secondary Market ◽  
Market Development ◽  
Use Case ◽  
Short Term ◽  
Funding Mechanism ◽  
Research Gap

AbstractThe phenomenon of a blockchain use case called initial coin offering (ICO) is drawing increasing attention as a novel funding mechanism. ICO is a crowdfunding type that utilizes blockchain tokens to allow for truly peer-to-peer investments. Although more than $7bn has been raised globally via ICOs as at 2018, the concept and its implications are not yet entirely understood. The research lags behind in providing in-depth analyses of ICO designs and their long-term success. We address this research gap by developing an ICO taxonomy, applying a cluster analysis to identify prevailing ICO archetypes, and providing an outlook on the token value market performance for individual archetypes. We identify five ICO design archetypes and display their secondary market development from both a short-term and a long-term perspective. We contribute to an in-depth understanding of ICOs and their implications. Further, we offer practitioners tangible design and success indications for future ICOs.

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.

scholarly journals Survey-Based Analysis of Current Trends for Prescribing Gastrointestinal Protectants among Small-Animal General Practitioners in Portugal

2021 ◽  
Vol 8 (5) ◽  
pp. 70
Author(s):  
Rita Baptista ◽  
Ryane Englar ◽  
Berta São Braz ◽  
Rodolfo Oliveira Leal
Keyword(s):  
General Practitioners ◽  
Healthcare Providers ◽  
Small Animal ◽  
Cross Sectional Study ◽  
Online Forums ◽  
Educational Strategies ◽  
Cross Sectional ◽  
Current Trends ◽  
Therapeutic Value

In both human and veterinary healthcare, gastrointestinal protectants (GIPs) are considered a staple of clinical practice in that they are prescribed by general practitioners (GPs) and specialists alike. Concerning GIP use, overprescription of proton pump inhibitors (PPIs) has become a growing concern among human healthcare providers. This trend has also been documented within veterinary practice, prompting the American College of Veterinary Internal Medicine (ACVIM) to publish a consensus statement in 2018 concerning evidence-based indications for GIP use. This observational cross-sectional study evaluated self-reported prescribing protocols among Portuguese GPs to determine whether there is adherence to the consensus guidelines. Respondents were Portuguese GPs recruited by social media posts in veterinarian online forums. Data were collected from 124 respondents concerning their GIPs of choice and their rationales for prescribing them. Data were mined for prescription patterns and protocols. Among GIPs, PPIs were prescribed more often. Rationales for use included gastrointestinal ulceration and erosion (GUE), prophylactic management of nonerosive gastritis, pancreatitis, reflux esophagitis, and steroid-induced ulceration. Once-daily administration of PPIs was the most frequent dosing regime among respondents. Ninety-six percent of PPI prescribers advocated that the drug be administered either shortly before or at mealtime. Forty-nine percent of respondents supported long-term use of PPIs. Fifty-nine percent of respondents acknowledged discontinuing PPIs abruptly. This study supports that Portuguese GPs commonly prescribe GIPs in accordance with ACVIM recommendations to medically manage GUE. However, misuse of GIPs does occur, and they have been prescribed where their therapeutic value is debatable. Educational strategies should target GPs in an effort to reduce GIP misuse.

scholarly journals Long-term condition management for prisoners: improving the processes between community and prison

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
NMJ Wright ◽  
F Hankins ◽  
P Hearty
Keyword(s):  
Qualitative Interviews ◽  
Electronic Record ◽  
Medicines Management ◽  
Long Term Conditions ◽  
Police Custody ◽  
Barriers To Screening ◽  
High Prevalence ◽  
Facilitators And Barriers ◽  
Ongoing Monitoring

Abstract Background Prisoner populations have a disproportionately high prevalence of risk factors for long-term conditions (LTCs), and movement between community and prisons is a period of potential disruption in the ongoing monitoring and management of LTCs. Method Nineteen qualitative interviews with staff, recruited by purposive sampling for professional background, were conducted to explore facilitators and barriers to screening, monitoring and medicines management for LTCs. Results There is variability in prisoner behaviours regarding bringing community GP-prescribed medication to prison following arrest and detention in police custody, which affects service ability regarding seamless continuation of community prescribing actions. Systems for actively inputting clinical data into existing, nationally agreed, electronic record templates for QOF monitoring are under-developed in prisons and such activity is dependent upon individual “enthusiast(s)”. Conclusion There is a pressing need to embed standardised QOF monitoring systems within an integrated community/prison commissioning framework, supported by connectivity between prison and community primary care records, including all activity related to QOF compliance.

scholarly journals Measuring the long-term effects of informal science education experiences: challenges and potential solutions

2021 ◽  
Vol 3 (1) ◽  
Author(s):  
Nancy L. Staus ◽  
John H. Falk ◽  
Aaron Price ◽  
Robert H. Tai ◽  
Lynn D. Dierking
Keyword(s):  
Science Learning ◽  
Longitudinal Research ◽  
Informal Science Education ◽  
Informal Science ◽  
Long Term Effects ◽  
Science Center ◽  
Informal Science Learning ◽  
Learner Outcomes ◽  
Key Issues

AbstractDespite the fact that most science learning takes place outside of school, little is known about how engagement in informal science learning (ISL) experiences affects learners’ knowledge, skill development, interest, or identities over long periods of time. Although substantial ISL research has documented short-term outcomes such as the learning that takes place during a science center visit, research suggests that the genuine benefits of informal experiences are long-term transformations in learners as they pursue a “cascade” of experiences subsequent to the initial educational event. However, a number of major methodological challenges have limited longitudinal research projects investigating the long-term effects of ISL experiences. In this paper we identify and address four key issues surrounding the critical but challenging area of how to study and measure the long-term effects or impacts of ISL experiences: attribution, attrition, data collection, and analytic approaches. Our objective is to provide guidance to ISL researchers wishing to engage in long-term investigations of learner outcomes and to begin a dialogue about how best to address the numerous challenges involved in this work.

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