RESUMO
BACKGROUND: To improve understanding as well as uptake of health educational material, it should be tailored to informational needs, offer intuitive modes of interaction, and present credible evidence for health claims. Dialogue systems go some way in meeting these requirements, as they emulate interactive and intuitive person-to-person communication. However, most works do not offer a formal model nor modelling process to structure dialogue content, and do not focus on ensuring credibility. METHODS: We propose an Extended Model of Argument (EMA) dialogue model and modelling process to support educational dialogue systems. In this dialogue model, computerized arguments directly offer evidence for health claims. EMA further offers "dialogue by design", where argument structures and interrelations are dynamically leveraged to offer dialogues, instead of relying on predefining discourse flows. We implemented an EMA-based dialogue education system for Juvenile Idiopathic Arthritis (JIA). We performed a qualitative evaluation with JIA health experts involving a Cognitive Walkthrough and Semi-Structured Interview. We applied Directed Content Analysis using categories from the O'Grady framework, and coded sub-themes within those categories using Grounded Theory. RESULTS: We identified 6 sub-themes within the participant feedback pertaining to Quality, Credibility, and Utility. Participants attached strong importance to credibility and found the dialogue system to be a flexible educational tool. Some participants suggested sorting educational items by importance, and presenting only salient knowledge associations to reduce dialogue complexity. CONCLUSION: Overall, our qualitative evaluation confirmed the following: the ability of EMA to offer credible and appropriate dialogues; and, in general, the utility of dialogue systems to educate JIA patients and their families. In future work, we will revise the system based on evaluation feedback, and perform a more extensive evaluation with patients and caregivers.
Assuntos
Artrite Juvenil , Autogestão , Doença Crônica , Humanos , Educação de Pacientes como Assunto , SemânticaRESUMO
OBJECTIVE: To identify barriers and facilitators to the uptake of information from research by parents of children with juvenile idiopathic arthritis (JIA). METHODS: Parents of children with JIA participated in focus group and telephone interviews at four Canadian pediatric rheumatology centers. The semistructured interviews focused on perceptions about JIA research, how new information about JIA was obtained and used, and what information was of most interest. Transcripts were analyzed using a general inductive approach. RESULTS: Twenty-eight parents participated in the study. Parents were very interested in research that addresses the outcomes of JIA and side effects of medications. Parents communicated an expectation that information from research be communicated to them by their child's pediatric rheumatologist as part of clinical care. Parents felt that it would be helpful to have information available to them in a variety of formats including written, video, and online. The timing of information delivery is an important factor, with parents being most interested and engaged in learning about new information about JIA at diagnosis and disease flares. We found that parents were overall unaware of new findings from JIA research and therefore may not be optimally utilizing this potentially helpful information in the care of their children. CONCLUSION: This study has led to an understanding of Canadian parents' perceptions about research and existing gaps in the translation of research knowledge. This information will facilitate the development, implementation, and evaluation of future knowledge translation interventions aimed at improving the uptake of research information in the care of children with JIA.
RESUMO
BACKGROUND: Inexperience and forgetting perioperative care instruction are significant drivers of parental stress during pediatric tonsillectomy care. With the widespread use of mobile technology, parents now desire a system that provides them with information that is timely, accessible, and comprehensive. Tonsil-Text-To-Me (TTTM) is a text messaging system that sends out automated and timed texts to parents of children who are undergoing tonsillectomy. OBJECTIVE: The objective of this study was to pilot-test TTTM to assess for feasibility and usability and collect suggestions for system improvements desired by parents from a pediatric otolaryngology text message service. METHODS: Parents of pediatric patients who were being scheduled for tonsillectomy with or without adenoidectomy were prospectively enrolled. An exploratory qualitative study using a semistructured interview guide was performed after parents received the automated texts 2 weeks before and 1 week after their child's surgery. RESULTS: A total of 7 parents were interviewed (data saturation was reached). Participants were all of maternal relation to the patient. Overall, all parents felt that the TTTM service was an improvement to the current standard model of information delivery. Parents also reported that the text messages reduced their anxiety and improved their performance when caring for their children during the perioperative period. No parents expressed privacy concerns about receiving texts and regarding the information included in the messages. Service suggestions showed that parents were eager for more information and had a high threshold for message reception regarding their child's surgical care. CONCLUSIONS: All parents expressed enthusiasm for a text message service during their child's tonsillectomy perioperative period. The care instructions and reminders provided to parents via automated and timed text messages may be a strategy to improve information delivery in a simple and accessible format that could empower families in their own health care.
RESUMO
Juvenile Idiopathic Arthritis (JIA) is the most common chronic rheumatic disease of childhood, with outcomes including pain, prolonged dependence on medications, and disability. Parents of children with JIA report being overwhelmed by the volume of information in the patient education materials that are available to them. This paper addresses this educational gap by applying an artificial intelligence method, based on an extended model of argument, to design and implement a dialogue system that allows users get the educational material they need, when they need it. In the developed system, the studied model of argument was leveraged as part of the system's dialogue manager. A qualitative evaluation of the system, using cognitive walkthroughs and semi-structured interviews with JIA domain experts, suggests that these methods show great promise for providing quality information to families of children with JIA when they need it.
Assuntos
Artrite Juvenil , Doenças Reumáticas , Inteligência Artificial , Criança , Humanos , Pais , Qualidade de VidaRESUMO
OBJECTIVE: Facebook (FB) ads are touted as a way to facilitate recruitment of hard to reach participants into digital health research but the evidence has been mixed. This study aimed to empirically evaluate the impact and cost-effectiveness of paid ads for recruitment into a national trial testing an Internet-based, coached intervention for parents of children with Fetal Alcohol Spectrum Disorders. METHODS: Post hoc analysis of FB ad data and Google analytics on the online trial consent site (myStudies) were conducted on 11 campaigns employing static image/text ads. Standard metrics (e.g., click through rate, cost per 1000 impressions, cost per consent) were calculated and descriptive statistics comparing FB ad engagement and enrolled participants over time were conducted. RESULTS: Ad campaigns were active for a combined 115â¯days over 58â¯weeks resulting in 1533 links to the online recruitment site. During the ad campaigns, the mean rate of enrolment was 1 participant every 2â¯days. The first 3 ad campaigns were the most cost-effective. Mean cost per enrolment was $19.27 (Canadian dollars). CONCLUSIONS: FB ads were efficient and cost-effective in broad dissemination of trial information, but more research is needed to explore the impact of saturation (how often ads are posted), design (what is in the ad), and individual determinants (who is likely to respond to an ad) on converting FB ad engagement into enrolment. Avoiding a reductionist approach to analytics will help ensure appropriate and targeted strategies remain the priority for digital health research recruitment through social media.
RESUMO
OBJECTIVE: To determine barriers and facilitators to the uptake of findings from the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) study into clinical care by pediatric rheumatologists (PR) and allied health professionals (AHP) caring for children with juvenile idiopathic arthritis (JIA) in Canada. METHODS: PR and AHP participated in this qualitative study through telephone interviews. Interview guides were developed using the Theoretical Domains Framework and focused on the use of information from the ReACCh-Out study in the practice of counseling patients and families. A directed content analysis approach was used for coding. RESULTS: Nineteen interviews (8 PR and 11 AHP) were completed. All PR had knowledge of the ReACCh-Out study. Three major themes were identified: (1) both groups are motivated to use information from research in clinical care; (2) volume and emotional effect of information on families are barriers; and (3) specific timepoints in care trigger providing this information. AHP had less knowledge of the ReACCh-Out study, did not feel it was their primary role to provide this information, and have a desire for more opportunity to participate in academic forums related to research. CONCLUSION: We have described a comprehensive overview of the barriers and facilitators perceived by healthcare providers in the translation of knowledge from JIA research into use in clinical practice. These findings provide a foundation for the development of knowledge translation strategies in the care of children with JIA and other rheumatic diseases.
Assuntos
Pessoal Técnico de Saúde/psicologia , Artrite Juvenil/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Avaliação de Resultados em Cuidados de Saúde , Reumatologistas/psicologia , Pesquisa Translacional Biomédica , Adolescente , Canadá , Criança , Barreiras de Comunicação , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa QualitativaRESUMO
Families of children with Juvenile Idiopathic Arthritis need a way to interact with Patient Education Materials (PEM) so that learning occurs at their own pace, on topics that are relevant to them. This paper proposes a novel, dialogue-based approach to address these needs. Using an extended version of Toulmin's model of argument as a theory-based classification method, we digitized paper-based PEM to render an interactive dialogue. The dialogue allows the user to explore a topic with respect to their interests and apprehensions as opposed to providing a static, generic document.