Social media provides a platform for easily accessible, relevant health information and emotional and practical support at the touch of a button for millions of people with diabetes. Therein however ...lies a challenge. The accuracy and reliability of such information is often unknown and unverified, not all interactions are deemed supportive; practically or emotionally, and not all members of society have equitable access. Cyber bullying, requests for personal information and uninvited sharing are among the risks associated with social media, yet the use of online social media is increasing exponentially. Such reliance on web-based health information has given rise to concerns about patients’ ability to accurately assess the credibility of online sources as well as the potential detrimental effect on personal well-being and patient-provider relations. In addition, there are rising digital disparities for particular subpopulations. Further, these concerns apply to where and how health care professionals should engage or refer patients to in terms of platforms of online support. There is little doubt regarding the popularity of social media, both within and outside of the health arena but there are also concerns. This article outlines five key areas associated with social media use in people living with diabetes and presents potential considerations moving forward. We focus on (1) social media as a platform for information and support; (2) social media interactions that are not supportive; (3) lessons from the DOC; (4) concerns about accuracy, reliability, and accessibility of information; and (5) differing priorities of health care professionals and patients.
STEPWISE is a theory-informed self-management education programme that was co-produced with service users, healthcare professionals and interventionists to support weight loss for people with ...schizophrenia. We report the process evaluation to inform understanding about the intervention and its effectiveness in a randomised controlled trial (RCT) that evaluated its efficacy.
Following the UK Medical Research Council (MRC) Guidelines for developing and evaluating complex interventions, we explored implementation quality. We considered causal mechanisms, unanticipated consequences and contextual factors associated with variation in actual and intended outcomes, and integrated treatment fidelity, using the programme theory and a pipeline logic model. We followed a modified version of Linnan and Steckler's framework and single case design. Qualitative data from semi-structured telephone interviews with service-users (n = 24), healthcare professionals delivering the intervention (n = 20) and interventionists (n = 7) were triangulated with quantitative process and RCT outcome data and with observations by interventionists, to examine convergence within logic model components.
Training and course materials were available although lacked co-ordination in some trusts. Healthcare professionals gained knowledge and some contemplated changing their practice to reflect the (facilitative) 'style' of delivery. They were often responsible for administrative activities increasing the burden of delivery. Healthcare professionals recognised the need to address antipsychotic-induced weight gain and reported potential value from the intervention (subject to the RCT results). However, some doubted senior management commitment and sustainability post-trial. Service-users found the intervention highly acceptable, especially being in a group of people with similar experiences. Service-users perceived weight loss and lifestyle benefits; however, session attendance varied with 23% (n = 47) attending all group-sessions and 17% (n = 36) attending none. Service-users who lost weight wanted closer monitoring and many healthcare professionals wanted to monitor outcomes (e.g. weight) but it was outside the intervention design. No clinical or cost benefit was demonstrated from the intermediate outcomes (RCT) and any changes in RCT outcomes were not due to the intervention.
This process evaluation provides a greater understanding of why STEPWISE was unsuccessful in promoting weight loss during the clinical trial. Further research is required to evaluate whether different levels of contact and objective monitoring can support people with schizophrenia to lose weight.
ISRCTN, ISRCTN19447796. Registered 20 March 2014.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Glycemic control in type 1 diabetes mellitus (T1DM) remains a challenge for many, despite the availability of modern diabetes technology. While technologies have proven glycemic benefits and may ...reduce excess mortality in some populations, both mortality and complication rates remain significantly higher in T1DM than the general population. Diabetes technology can reduce some burdens of diabetes self-management, however, it may also increase anxiety, stress, and diabetes-related distress. Additional workload associated with diabetes technologies and the dominant focus on metabolic control may be at the expense of quality-of-life. Diabetes is associated with significantly increased risk of suicidal ideation, self-harm, and suicide. The risk increases for those with diabetes and comorbid mood disorder. For example, the prevalence of depression is significantly higher in people with diabetes than the general population, and thus, people with diabetes are at even higher risk of suicide. The Center for Disease Control and Prevention reported a 24% rise in US national suicide rates between 1999 and 2014, the highest in 30 years. In the United Kingdom, 6000 suicides occur annually. Rates of preventable self-injury mortality stand at 29.1 per 100 000 population. Individuals with diabetes have an increased risk of suicide, being three to four times more likely to attempt suicide than the general population. Furthermore, adolescents aged 15 to 19 are most likely to present at emergency departments for self-inflicted injuries (9.6 per 1000 visits), with accidents, alcohol-related injuries, and self-harm being the strongest risk factors for suicide, the second leading cause of death among 10 to 24 year olds. While we have developed tools to improve glycemic control, we must be cognizant that the psychological burden of chronic disease is a significant problem for this vulnerable population. It is crucial to determine the psychosocial and behavioral predictors to uptake and continued use of technology in order to aid the identification of those individuals most likely to realize benefits of any intervention as well as those individuals who may require more support to succeed with technology.
Background:
Increasing numbers of people with diabetes, especially those with type 1 diabetes (T1D), are using continuous glucose monitoring (CGM) systems to support their diabetes self-management, ...yet even so only approximately 30% of individuals with T1D meet the American Diabetes Association HbA1c target of 58 mmol/mol (7.5%) for children and 53 mmol/mol (7.0%) for adults. We aimed to produce a useful tool for people with diabetes to improve personalized understanding of CGM.
Method:
A brief leaflet titled “Guidelines to Improve Glucose Control Using CGM” was developed for people with diabetes. Semistructured interviews were held with 12 adults with T1D, focusing on their views regarding the relevance, readability, and usability of the newly revised leaflet. Participants were specifically asked to share what they would find most useful in terms of information and advice provided as well as how to make use of that in the context of their own diabetes self-management. Data were analyzed thematically and used to inform revisions of the leaflet content.
Results:
Data highlighted information and advice needs as well as personalization in terms of own diabetes management.
Conclusions:
CGM systems are associated with improved medical and psychosocial outcomes, especially when used effectively to meet the individual needs of the user. Ensuring greater understanding of the individual’s expectations when first starting CGM, matching experience and skills to meet those expectations, and tailoring use to the individual needs of each person with diabetes (PWD) are all required to achieve widespread and consistent benefit.
Diabetes is unique among chronic diseases because clinical outcomes are intimately tied to how the person living with diabetes reacts to and implements treatment recommendations. It is further ...characterised by widespread social stigma, judgement and paternalism. This physical, social and psychological burden collectively influences self-management behaviours. It is widely recognised that the individual's perspective about the impact of trying to manage the disease and the burden that self-management confers must be addressed to achieve optimal health outcomes. Standardised, rigorous assessment of mental and behavioural health status, in interaction with physical health outcomes is crucial to aid understanding of person-reported outcomes (PROs). Whilst tempting to conceptualise PROs as an issue of perceived quality of life (QoL), in fact health-related QoL is multi-dimensional and covers indicators of physical or functional health status, psychological and social well-being. This complexity is illuminated by the large number of person reported outcome measures (PROMs) that have been developed across multiple psychosocial domains. Often measures are used inappropriately or because they have been used in the scientific literature rather than based on methodological or outcome assessment rigour. Given the broad nature of psychosocial functioning/mental health, it is important to broadly define PROs that are evaluated in the context of therapeutic interventions, real-life and observational studies. This report summarises the central themes and lessons derived in the assessment and use of PROMs amongst adults with diabetes. Effective assessment of PROMs routinely in clinical research is crucial to understanding the true impact of any intervention. Selecting appropriate measures, relevant to the specific factors of PROs important in the research study will provide valuable data alongside physical health data.
OBJECTIVE
Approximately 200 million people worldwide use injectable therapies as part of diabetes management. There appears to be a significant gap between insulin injection technique recommendations ...and injection practice for many. We aimed to develop and validate a novel, brief, self-administered injection technique assessment questionnaire.
RESEARCH DESIGN AND METHODS
An iterative codesign process was conducted. Focus groups and interviews with adults (or parents of children) with type 1 or type 2 diabetes and health care providers (HCPs) elicited views and refined the tool for broader distribution to the target audience. Questions addressed ease of understanding; relevance; included items and potential missing questions; feelings about diabetes; and any discomfort or judgment felt when completing the tool. A user guide was developed with cognitive interviewing performed to ensure relevance, acceptability, readability, and understanding. Statistical analyses included propensity score matching to identify a subset of the Worldwide Injection Technique Questionnaire with similar characteristics. Boruta feature selection, Cramér’s V, and multiple correspondence analysis were conducted.
RESULTS
HCPs and 16 people with diabetes participated in the initial focus groups and interviews. Questions were reported as clinically relevant, simple to complete, “about the right length,” relevant, and easy to understand. A total of 267 participants completed the survey reviewing the questionnaire. A further 16 participants underwent cognitive interviews. The complete resource was then reviewed by another 23 people with diabetes as a final check for completeness and usability. Statistical analyses demonstrated high validity and reliability.
CONCLUSION
This novel resource is clinically relevant, acceptable, and easy to use as both a clinical tool and a self-assessment tool for people using injectable therapies for diabetes.
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