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 A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS – Practical systematic RevIew of Self-Management Support for long-term conditions

2014 ◽  
Vol 2 (53) ◽  
pp. 1-580 ◽  
Author(s):  
Stephanie JC Taylor ◽  
Hilary Pinnock ◽  
Eleni Epiphaniou ◽  
Gemma Pearce ◽  
Hannah L Parke ◽  
...  
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Systematic Reviews ◽  
Self Management ◽  
Management Support ◽  
Health Care Organisation ◽  
Long Term Conditions ◽  
Care Organisation ◽  
Overviews Of Systematic Reviews

BackgroundDespite robust evidence concerning self-management for some long-term conditions (LTCs), others lack research explicitly on self-management and, consequently, some patient groups may be overlooked.AimTo undertake a rapid, systematic overview of the evidence on self-management support for LTCs to inform health-care commissioners and providers about what works, for whom, and in what contexts.MethodsSelf-management is ‘the tasks . . . individuals must undertake to live with one or more chronic conditions . . . [including] . . . having the confidence to deal with medical management, role management and emotional management of their conditions’. We convened an expert workshop and identified characteristics of LTCs potentially of relevance to self-management and 14 diverse exemplar LTCs (stroke, asthma, type 2 diabetes mellitus, depression, chronic obstructive pulmonary disease, chronic kidney disease, dementia, epilepsy, hypertension, inflammatory arthropathies, irritable bowel syndrome, low back pain, progressive neurological disorders and type 1 diabetes mellitus). For each LTC we conducted systematic overviews of systematic reviews of randomised controlled trials (RCTs) of self-management support interventions (‘quantitative meta-reviews’); and systematic overviews of systematic reviews of qualitative studies of patients’ experiences relating to self-management (‘qualitative meta-reviews’). We also conducted an original systematic review of implementation studies of self-management support in the LTCs. We synthesised all our data considering the different characteristics of LTCs. In parallel, we developed a taxonomy of the potential components of self-management support.ResultsWe included 30 qualitative systematic reviews (including 515 unique studies), 102 quantitative systematic reviews (including 969 RCTs), and 61 studies in the implementation systematic review. Effective self-management support interventions are multifaceted, should be tailored to the individual, their culture and beliefs, a specific LTC and position on the disease trajectory, and underpinned by a collaborative/communicative relationship between the patient and health-care professional (HCP) within the context of a health-care organisation that actively promotes self-management. Self-management support is a complex intervention and although many components were described and trialled in the studies no single component stood out as more important than any other. Core components include (1) provision of education about the LTC, recognising the importance of understanding patients’ pre-existing knowledge and beliefs about their LTC; (2) psychological strategies to support adjustment to life with a LTC; (3) strategies specifically to support adherence to treatments; (4) practical support tailored to the specific LTC, including support around activities of daily living for disabling conditions, action plans in conditions subject to marked exacerbations, intensive disease-specific training to enable self-management of specific clinical tasks; and (5) social support as appropriate. Implementation requires a whole-systems approach which intervenes at the level of the patient, the HCP and the organisation. The health-care organisation is responsible for providing the means (both training and time/material resources) to enable HCPs to implement, and patients to benefit from, self-management support, regularly evaluating self-management processes and clinical outcomes. More widely there is a societal need to address public understanding of LTCs. The lack of public story for many conditions impacted on patient help-seeking behaviour and public perceptions of need.ConclusionsSupporting self-management is inseparable from the high-quality care for LTCs. Commissioners and health-care providers should promote a culture of actively supporting self-management as a normal, expected, monitored and rewarded aspect of care. Further research is needed to understand how health service managers and staff can achieve this culture change in their health-care organisations.Study registrationThis study is registered as PROSPERO CRD42012002898.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals Reducing Care Utilisation through Self-management Interventions (RECURSIVE): a systematic review and meta-analysis

2014 ◽  
Vol 2 (54) ◽  
pp. 1-200 ◽  
Author(s):  
Maria Panagioti ◽  
Gerry Richardson ◽  
Elizabeth Murray ◽  
Anne Rogers ◽  
Anne Kennedy ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Utilisation ◽  
Professional Support ◽  
Self Management ◽  
Management Support ◽  
Long Term Conditions ◽  
Care Utilisation ◽  
Hospital Use

BackgroundA critical part of future service delivery will involve improving the degree to which people become engaged in ‘self-management’. Providing better support for self-management has the potential to make a significant contribution to NHS efficiency, as well as providing benefits in patient health and quality of care.ObjectiveTo determine which models of self-management support are associated with significant reductions in health services utilisation (including hospital use) without compromising outcomes, among patients with long-term conditions.Data sourcesCochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health, EconLit (the American Economic Association’s electronic bibliography), EMBASE, Health Economics Evaluations Database, MEDLINE (the US National Library of Medicine’s database), MEDLINE In-Process & Other Non-Indexed Citations, NHS Economic Evaluation Database (NHS EED) and PsycINFO (the behavioural science and mental health database), as well as the reference lists of published reviews of self-management support.MethodsWe included patients with long-term conditions in all health-care settings and self-management support interventions with varying levels of additional professional support and input from multidisciplinary teams. Main outcome measures were quantitative measures of service utilisation (including hospital use) and quality of life (QoL). We presented the results for each condition group using a permutation plot, plotting the effect of interventions on utilisation and outcomes simultaneously and placing them in quadrants of the cost-effectiveness plane depending on the pattern of outcomes. We also conducted conventional meta-analyses of outcomes.ResultsWe found 184 studies that met the inclusion criteria and provided data for analysis. The most common categories of long-term conditions included in the studies were cardiovascular (29%), respiratory (24%) and mental health (16%). Of the interventions, 5% were categorised as ‘pure self-management’ (without additional professional support), 20% as ‘supported self-management’ (< 2 hours’ support), 47% as ‘intensive self-management’ (> 2 hours’ support) and 28% as ‘case management’ (> 2 hours’ support including input from a multidisciplinary team). We analysed data across categories of long-term conditions and also analysed comparing self-management support (pure, supported, intense) with case management. Only a minority of self-management support studies reported reductions in health-care utilisation in association with decrements in health. Self-management support was associated with small but significant improvements in QoL. Evidence for significant reductions in utilisation following self-management support interventions were strongest for interventions in respiratory and cardiovascular disorders. Caution should be exercised in the interpretation of the results, as we found evidence that studies at higher risk of bias were more likely to report benefits on some outcomes. Data on hospital use outcomes were also consistent with the possibility of small-study bias.LimitationsSelf-management support is a complex area in which to undertake literature searches. Our analyses were limited by poor reporting of outcomes in the included studies, especially concerning health-care utilisation and costs.ConclusionsVery few self-management support interventions achieve reductions in utilisation while compromising patient outcomes. Evidence for significant reductions in utilisation were strongest for respiratory disorders and cardiac disorders. Research priorities relate to better reporting of the content of self-management support, exploration of the impact of multimorbidity and assessment of factors influencing the wider implementation of self-management support.Study registrationThis study is registered as PROSPERO CRD42012002694.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals Using the patient activation measure to examine the self-management support needs of a population of UK workers with long-term health conditions

2021 ◽  
pp. 174239532110434
Author(s):  
Sally Hemming ◽  
Fehmidah Munir
Keyword(s):  
Mental Health ◽  
Patient Activation ◽  
Health Conditions ◽  
Self Management ◽  
Support Needs ◽  
Management Support ◽  
Long Term Conditions ◽  
Mental Health Conditions ◽  
Patient Activation Measure

Objectives To examine differences in patient activation and self-management support needs in a population of UK workers with long-term health conditions. Methods Demographic, health and activation information were taken from the data of participants with long-term conditions, collected via an online cross-sectional survey of workers. The 13-item British patient activation measure measured workers knowledge, skills and confidence towards self-managing. Results Three hundred and seven workers with mental health, musculoskeletal and other conditions completed the patient activation measure. Mental health conditions were most prevalent (36.8%). Workers were higher activated, however workers with mental health conditions were significantly less activated ( p = 0.006). Differences in activation by condition severity and age were revealed. Discussion This study provides insight to the activation of UK workers with long-term conditions. Whilst workers with mental health conditions need more training and education to self-manage, workers are variably activated indicating broader support needs. There is a gap for workplace self-management support. The patient activation measure is used in healthcare to improve people’s self-management and should be considered to be included in the workplace, and could form part of interventions to support workers self-management. More rigorous studies, including the patient activation measure, are needed to identify the best approaches to identifying workers self-management support needs.

scholarly journals An Adaptive Mobile Health System to Support Self-Management for Persons With Chronic Conditions and Disabilities: Usability and Feasibility Studies (Preprint)

2018 ◽  
Author(s):  
I Made Agus Setiawan ◽  
Leming Zhou ◽  
Zakiy Alfikri ◽  
Andi Saptono ◽  
Andrea D Fairman ◽  
...  
Keyword(s):  
Mobile Health ◽  
Chronic Conditions ◽  
Self Management ◽  
Management Support ◽  
Secondary Complications ◽  
Change Over Time ◽  
Adaptive Architecture ◽  
Persuasive Technologies ◽  
Over Time

BACKGROUND Persons with chronic conditions and disabilities (PwCCDs) are vulnerable to secondary complications. Many of these secondary complications are preventable with proactive self-management and proper support. To enhance PwCCDs' self-management skills and conveniently receive desired support, we have developed a mobile health (mHealth) system called iMHere. In 2 previous clinical trials, iMHere was successfully used to improve health outcomes of adult participants with spina bifida and spinal cord injury. To further expand use of iMHere among people with various types of disabilities and chronic diseases, the system needs to be more adaptive to address 3 unique challenges: 1) PwCCDs have very diverse needs with regards to self-management support, 2) PwCCDs’ self-management needs may change over time, and 3) it is a challenge to keep PwCCDs engaged and interested in long-term self-management. OBJECTIVE The aim of this study was to develop an adaptive mHealth system capable of supporting long-term self-management and adapting to the various needs and conditions of PwCCDs. METHODS A scalable and adaptive architecture was designed and implemented for the new version, iMHere 2.0. In this scalable architecture, a set of mobile app modules was created to provide various types of self-management support to PwCCDs with the ability to add more as needed. The adaptive architecture empowers PwCCDs with personally relevant app modules and allows clinicians to adapt these modules in response to PwCCDs’ evolving needs and conditions over time. Persuasive technologies, social support, and personalization features were integrated into iMHere 2.0 to engage and motivate PwCCDs and support long-term usage. Two initial studies were performed to evaluate the usability and feasibility of the iMHere 2.0 system. RESULTS The iMHere 2.0 system consists of cross-platform client and caregiver apps, a Web-based clinician portal, and a secure 2-way communication protocol for providing interactions among these 3 front-end components, all supported by a back-end server. The client and caregiver apps have 12 adaptive app modules to support various types of self-management tasks. The adaptive architecture makes it possible for PwCCDs to receive personalized app modules relevant to their conditions with or without support from various types of caregivers. The personalization and persuasive technologies in the architecture can be used to engage PwCCDs for long-term usage of the iMHere 2.0 system. Participants of the usability study were satisfied with the iMHere 2.0 client app. The feasibility evaluation revealed several practical issues to consider when implementing the system on a large scale. CONCLUSIONS We developed an adaptive mHealth system as a novel method to support diverse needs in self-management for PwCCDs that can dynamically change over time. The usability of the client app is high, and it was feasible for PwCCDs to use in supporting personalized and evolving self-care needs.

The Nexus of M-Health and Self-Care

2019 ◽  
pp. 235-259
Author(s):  
Anastasius S. Moumtzoglou
Keyword(s):  
Mobile Health ◽  
Self Care ◽  
Normal Activity ◽  
Models Of Care ◽  
Self Management ◽  
Management Support ◽  
Long Term Conditions ◽  
Concept Of Health ◽  
Health Related

Self-care emerged from the concept of health promotion in the 1970s while from 2000 onwards the term self-management gained popularity, with a greater focus on long-term conditions and the trend towards more holistic models of care. Although self-management and self-care are often used interchangeably, a distinction between the two concepts can be made. Both can be considered in terms of a continuum, with self-care at one end as “normal activity” and self-management an extension of this. Self-management support is the assistance given to patients in order to encourage daily decisions that improve health-related behaviors and clinical outcomes. The chapter envisions these concepts on a continuum with one pole representing mobile health and the other self-care. It concludes that self-management support is the nexus of mobile health and self-care.

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