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1.
Transl Behav Med ; 14(6): 359-367, 2024 May 24.
Article in English | MEDLINE | ID: mdl-38648182

ABSTRACT

Childhood cancer survivors have a higher risk of developing cardiomyopathy than members of the general population. Screening echocardiograms can facilitate early detection and treatment of cardiomyopathy. Furthermore, motivational interviewing can increase uptake of cardiac screening. However, such approaches are time- and resource-intensive, which limits their reach to the survivors who need them. We describe how we utilized a user-centered design process to translate an in-person motivational interviewing intervention into an eHealth tool to improve cardiac screening among childhood cancer survivors. We used an iterative, three-phase, user-centered design approach: (i) setting the stage (convening advisory boards and reviewing the original intervention), (ii) content programming and development (writing and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.) For cognitive interviews, participants were recruited via institutional participant registries and medical records. Data were analyzed using rapid qualitative analysis. During Phase 1, we identified survivor and provider advisors and outlined elements of the in-person intervention to change for the eHealth tool. During Phases 2 and 3, advisors recommended several modifications that guided the final intervention content and flow. Examples include: acknowledging potential hesitation or apprehension surrounding medical screenings, addressing barriers and facilitators to obtaining screening, and improving the tool's usability and appeal. In Phase 3, cognitive interview participants suggested additional refinements to the intervention language. This translation process shows that continued in-depth engagement of community advisors and iterative testing can improve the applicability of an eHealth to survivors' lived experiences and social contexts.


Childhood cancer survivors have a higher-than-average risk for developing heart damage compared to the general population. One-on-one interviews aimed at educating survivors about the importance of screening for heart damage can increase engagement in screening, but these programs are often too resource-intensive to be made available to large groups of survivors. Programs delivered using digital technology, like websites and smartphone apps, can be a more accessible alternative. In this article, we describe how we translated an in-person counseling program into a digital tool. We convened advisors who were childhood cancer survivors and healthcare providers to review the tool throughout the three-phase translation process: (i) setting the stage (convening advisory boards and reviewing original intervention), (ii) content programming and development (writing, and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.). Our translation process shows that continuously engaging with advisory boards and testing apps with participants can improve health programs in line with communities' diverse perspectives.


Subject(s)
Cancer Survivors , Motivational Interviewing , Telemedicine , User-Centered Design , Humans , Motivational Interviewing/methods , Cancer Survivors/psychology , Female , Male , Child , Cardiomyopathies/therapy , Cardiomyopathies/psychology , Adolescent , Neoplasms/psychology , Neoplasms/therapy , Adult
2.
Disasters ; 39(1): 1-22, 2015 Jan.
Article in English | MEDLINE | ID: mdl-25243593

ABSTRACT

A comprehensive review of online, official, and scientific literature was carried out in 2012-13 to develop a framework of disaster social media. This framework can be used to facilitate the creation of disaster social media tools, the formulation of disaster social media implementation processes, and the scientific study of disaster social media effects. Disaster social media users in the framework include communities, government, individuals, organisations, and media outlets. Fifteen distinct disaster social media uses were identified, ranging from preparing and receiving disaster preparedness information and warnings and signalling and detecting disasters prior to an event to (re)connecting community members following a disaster. The framework illustrates that a variety of entities may utilise and produce disaster social media content. Consequently, disaster social media use can be conceptualised as occurring at a number of levels, even within the same disaster. Suggestions are provided on how the proposed framework can inform future disaster social media development and research.


Subject(s)
Communication , Disasters , Social Media/statistics & numerical data , Disaster Planning/organization & administration , Humans , Relief Work/organization & administration , Research/organization & administration
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