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1.
JMIR Form Res ; 8: e54168, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38573761

RESUMO

BACKGROUND: About 11 million Americans are caregivers for the 6.7 million Americans currently living with dementia. They provide over 18 billion hours of unpaid care per year, yet most have no formal dementia education or support. It is extremely difficult for clinicians to keep up with the demand for caregiver education, especially as dementia is neurodegenerative in nature, requiring different information at different stages of the disease process. In this digital age, caregivers often seek dementia information on the internet, but clinicians lack a single, reliable compendium of expert-approved digital resources to provide to dementia caregivers. OBJECTIVE: Our aim was to create a dementia caregiver resources website to serve as a hub for user-friendly, high-quality, and expert-reviewed dementia educational resources that clinicians can easily supply to family caregivers of people with dementia. METHODS: An interdisciplinary website development team (representing dementia experts from occupational therapy, nursing, social work, geriatrics, and neurology) went through 6 iterative steps of website development to ensure resource selection quality and eligibility rigor. Steps included (1) resource collection, (2) creation of eligibility criteria, (3) resource organization by topic, (4) additional content identification, (5) finalize resource selection, and (6) website testing and launch. Website visits were tracked, and a 20-item survey about website usability and utility was sent to Veterans Affairs tele-geriatrics interdisciplinary specialty care groups. RESULTS: Following website development, the dementia caregiver resource website was launched in February 2022. Over the first 9 months, the site averaged 1100 visits per month. The 3 subcategories with the highest number of visits were "general dementia information," "activities of daily living," and "self-care and support." Most (44/45, 98%) respondents agreed or strongly agreed that the website was easy to navigate, and all respondents agreed or strongly agreed that the resources were useful. CONCLUSIONS: The iterative process of creating the dementia caregiver resources website included continuous identification, categorization, and prioritization of resources, followed by clinician feedback on website usability, accessibility, and suggestions for improvement. The website received thousands of visits and positive clinician reviews in its first 9 months. Results demonstrate that an expert-vetted, nationally, and remotely available resource website allows for easy access to dementia education for clinicians to provide for their patients and caregivers. This process of website development can serve as a model for other clinical subspecialty groups seeking to create a comprehensive educational resource for populations who lack easy access to specialty care.

2.
Front Bioinform ; 4: 1347168, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38357576

RESUMO

EMBL-EBI provides a broad range of training in data-driven life sciences. To improve awareness and access to training course listings and to make digital learning materials findable and simple to use, the EMBL-EBI Training website, www.ebi.ac.uk/training, was redesigned and restructured. To provide a framework for the redesign of the website, the FAIR (findable, accessible, interoperable, reusable) principles were applied to both the listings of live training courses and the presentation of on-demand training content. Each of the FAIR principles guided decisions on the choice of technology used to develop the website, including the details provided about training and the way in which training was presented. Since its release the openly accessible website has been accessed by an average of 58,492 users a month. There have also been over 12,000 unique users creating accounts since the functionality was added in March 2022, allowing these users to track their learning and record completion of training. Development of the website was completed using the Agile Scrum project management methodology and a focus on user experience. This framework continues to be used now that the website is live for the maintenance and improvement of the website, as feedback continues to be collected and further ways to make training FAIR are identified. Here, we describe the process of making EMBL-EBI's training FAIR through the development of a new website and our experience of implementing Agile Scrum.

3.
Artigo em Inglês | MEDLINE | ID: mdl-37727059

RESUMO

Behavioral neurology & neuropsychiatry (BNNP) fellowships are accredited by the United Council for Neurologic Subspecialties (UCNS). Programs cover the UCNS-recommended topics differently. A curriculum accessible to all fellowships would standardize education and identify gaps in topics that are less well covered across programs. The purpose of the present needs assessment was to inform the development of the Online Core Curriculum and Mastery: BNNP (OCCAM-BNNP), a website for all UCNS-accredited BNNP programs. Program directors and fellows were surveyed to learn how well topics are covered and identify educational gaps, or specific topics on the UCNS website that are less well represented among programs. Thirty-seven fellowship program directors listed on the UCNS website were invited to take the survey and forward it to both current fellows (graduating in 2021) and recent graduates (graduated from 2015 to 2020). There were 29 responses from 37 programs. Of the 34 topics that respondents rated on a 1-5 Likert scale (from "not covered" to "completely covered"), 15 of 34 (44%) were identified as having >40% of responses as mostly "not covered," "incompletely covered," or "partially covered." Ninety-seven percent of respondents affirmed that it would be useful to have a free web-based resource for BNNP education. Slightly under one-half of all BNNP topics were not well covered. A survey was undertaken to identify and fill the educational gaps indicated by fellowship directors and fellows, and the OCCAM-BNNP website was developed as a repository for relevant content, providing a resource that many BNNP clinicians would find useful.


Assuntos
Neurologia , Neuropsiquiatria , Humanos , Estados Unidos , Avaliação das Necessidades , Currículo , Bolsas de Estudo , Neurologia/educação , Inquéritos e Questionários
4.
Procedia Comput Sci ; 206: 195-205, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36567868

RESUMO

Cancer patients often want information from "peers" with the same diagnosis or treatment. To increase access to this valuable resource, we developed a website to deliver written peer support to cancer patients undergoing stem cell transplant. Because little evidence describes how to optimize benefits or reduce potential harms of written peer support, we gathered multiple forms of stakeholder feedback to inform the website's ethical approach, personalization, design, function, and content: a Community Advisory Board; a longitudinal study of patients' written peer support needs and motivations; focus groups; semi-structured interviews; and usability testing. Findings provide a rich foundation for website development.

5.
JMIR Dermatol ; 5(3): e41201, 2022 Sep 26.
Artigo em Inglês | MEDLINE | ID: mdl-37632894

RESUMO

BACKGROUND: A rapid expansion of systemic immunological treatment options for atopic dermatitis (AD) has created a need for clinically relevant and understandable comparative efficacy and safety information for patients and clinicians. Given the scarcity of head-to-head trials, network meta-analysis (NMA) is an alternative way to enable robust comparisons among treatment options; however, NMA results are often complex and difficult to directly implement in shared decision-making. OBJECTIVE: The aim of this study is to develop a website that effectively presents the results of a living systematic review and NMA on AD treatments to patient and clinician users. METHODS: We conducted a multimethod study using iterative feedback from adults with AD, adult caregivers of children with AD, dermatologists, and allergists within a user-centered design framework. We used questionnaires followed by workshops among patients and clinicians to develop and improve the website interface. Usability testing was done with a caregiver of a patient with eczema. RESULTS: Questionnaires were completed by 31 adults with AD or caregivers and 94 clinicians. Patients and caregivers felt it was very important to know about new treatments (20/31, 65%). Clinicians felt the lack of evidence-based comparisons between treatments was a barrier to care (55/93, 59%). "Avoiding dangerous side effects" was ranked as the most important priority for patients (weighted ranking 5.2/7, with higher ranking being more important), and "improving patients' overall symptoms" was the most important priority for clinicians (weighted ranking 5.0/6). A total of 4 patients and 7 clinicians participated in workshops; they appreciated visualizations of the NMA results and found the website valuable for comparing different treatments. The patients suggested changes to simplify the interface and clarify terminology related to comparative efficacy. The user in the usability testing found the website intuitive to navigate. CONCLUSIONS: We developed a website, "eczematherapies.com," with a user-centered design approach. Visualizations of NMA results enable users to compare treatments as part of their shared decision-making process.

6.
BMC Cancer ; 20(1): 923, 2020 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-32977751

RESUMO

BACKGROUND: Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) is a web-based application that facilitates symptom screening and access to supportive care clinical practice guidelines (CPGs) for children and adolescents receiving cancer treatments. Objective was to develop SPARK family member web pages for pediatric patient family members accessing: (1) proxy symptom screening and symptom reports, and (2) care recommendations for symptom management based on CPGs. METHODS: SPARK family member web pages were developed and included access to symptom screening and care recommendations sections. Care recommendations for fatigue and mucositis were created. These were iteratively refined based upon cognitive interviews with English-speaking family members ≥16 years of age until less than two participants incorrectly understood sections as adjudicated by two independent raters. RESULTS: A total of 100 family members were enrolled who evaluated the SPARK family member web pages (n = 40), fatigue care recommendation (n = 30) and mucositis prevention care recommendation (n = 30). Among the last 10 participants, none said that the SPARK family member web pages were hard or very hard to use, one incorrectly understood one web page, none said either care recommendation was hard to understand and none were incorrect in their understanding of the care recommendations. CONCLUSIONS: We successfully developed SPARK web pages for use by family members of pediatric patients receiving cancer treatments. We also developed a process for translating CPG recommendations designed for healthcare professionals to lay language. The utility of SPARK family member web pages after clinical implementation could be a focus for future research.


Assuntos
Neoplasias/terapia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Internet , Masculino , Pessoa de Meia-Idade , Adulto Jovem
7.
J Med Internet Res ; 22(9): e19217, 2020 09 23.
Artigo em Inglês | MEDLINE | ID: mdl-32965234

RESUMO

Behavioral researchers are increasingly using interactive digital platforms, either as standalone or supplementary intervention tools, to facilitate positive changes in research participants' health habits. Research-oriented interactive websites optimally offer a variety of participatory mediums, such as blogs, user-driven content, or health activities. Owing to the multidirectional features of interactive websites, and a corresponding need to protect research participants' identity and data, it is paramount that researchers design ethical platforms that ensure privacy and minimize loss of anonymity and confidentiality. Authentication (ie, digital verification of one's identity) of interactive sites is one viable solution to these concerns. Although previous publications have addressed ethical requirements related to authenticated platforms, few applied guidelines in the literature facilitate adherence to ethical principles and legally compliant study protocols during all phases of research website creation (feasibility, design, implementation, and maintenance). Notably, to remain compliant with ethical standards and study protocols, behavioral researchers must collaborate with interdisciplinary teams to ensure that the authenticated site remains secure and usable in all stages of the project. In this tutorial, we present a case study conducted at a large research university. Through iterative and practical recommendations, we detail lessons learned from collaborations with the Institutional Review Board, legal experts, and information technology teams. Although the intricacies of our applied tutorial may require adaptations based on each institution's technological capacity, we are confident that the core takeaways are universal and thus useful to behavioral researchers creating ethically responsible and compliant interactive websites.


Assuntos
Pesquisa Comportamental/métodos , Comitês de Ética em Pesquisa/organização & administração , Humanos , Internet
8.
Int J Med Inform ; 141: 104230, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32688291

RESUMO

Accessing and receiving quality healthcare in an unfamiliar health system is a significant challenge for many new immigrants and refugees. This study aims to provide a three-phase model to develop a web-based health information website that helps populations with limited English proficiency (LEP) increase health literacy and improve healthcare service access. METHOD: First, we conducted a needs assessment from community leaders and service providers. Second, we developed contents from credible sources and tested each item using multiple readability tests. Last, we revised each item to lower the readability and retest its readability. RESULTS: The average reading level for the original 99 topics was assessed at 10.84 (SD= 3.26). After revisions, we were able to lower the readability to 8.56 (SD= 2.96), which was around two grade levels lower, on average. CONCLUSION: the main purpose for building an English based health information website was to assist the population with LEP. By using simple English with lower readability, it will ease the translation process. This study demonstrates a process to develop suitable contents for populations in need. In the future, incorporating visual aid and other multimedia will be beneficial in user engagement and knowledge retention.


Assuntos
Compreensão , Letramento em Saúde , Internet , Proficiência Limitada em Inglês , Multimídia , Leitura
9.
Patient Educ Couns ; 102(9): 1730-1735, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-30962077

RESUMO

BACKGROUND: Children's burn injuries can have a significant psychosocial impact on parents. However, the stress involved in caring for a child following a burn can often go unrecognized and does not necessarily prompt help seeking by parents. OBJECTIVE: It is common for adults to seek health-related support and information via the Internet. Many benefit from immediate and easy access to online psychological interventions. A prototype burn-specific, parent-focused, peer-informed, supportive website, designed to provide easy access to information and psychoeducation, was created and tested for acceptability. PATIENT INVOLVEMENT: Using a partnership-based method of website development, parents and professionals (clinical, academic and support organizations) were recruited and their particular expertise was acknowledged and valued. A participatory action approach was adopted to determine the acceptability of the website for parents/carers. METHODS: 31 participants (9 parents, 22 professionals) tested a prototype version of the website. Data was collected using the eHealth Impact Questionnaire and the concurrent think-aloud protocol. RESULTS: Parents and professionals had favorable opinions of the website. Parents' ratings tended to be more favorable than professionals', which was significant for the information and presentation. Participants' thoughts were categorized into seven topics: need, structure/navigation, trust/relevance, language/comprehension, therapeutic content, mode of delivery, and suggested improvements. DISCUSSION: Many practical and psychological barriers can prevent parents of burn-injured children accessing psychosocial support and contribute to a feeling of isolation. Participants felt that the website would be a valuable addition to UK pediatric burn care. The existence of an accessible resource could help to normalize parents' experience of their child's injury and reduce their perceived isolation, although peer interaction is not provided by the website. PRACTICAL VALUE: This online resource, hosting information and peers' personal experiences, offers promising and exciting opportunities to empower parents whilst providing accessible supportive advice to encourage self-care and formal/informal support seeking when necessary.


Assuntos
Queimaduras/enfermagem , Educação em Saúde/métodos , Internet , Pais/psicologia , Criança , Feminino , Humanos , Masculino , Grupo Associado , Reino Unido
10.
Nutrients ; 11(2)2019 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-30764537

RESUMO

We describe a 5-year (2011⁻2015) qualitative evaluation to refine the content/delivery of the Food Hero social marketing campaign recipes to low-income mothers. Objectives were to: (1) identify characteristics looked for in recipes; (2) determine recipe sources; (3) understand motivation for seeking new recipes and recipe adaptations; and (4) identify recipe website characteristics users valued. Nine focus groups (n = 55) were conducted in Portland, Oregon. Participants (35⁻52 years) were primary caregivers for ≥ one child, the primary household food shoppers/preparers, enrolled in the Supplemental Nutrition Assistance Program (SNAP) and able to speak/read English. Participants reported having "go-to" family recipes and regularly searching online for new recipes, especially those using ingredients available/preferred by family members. Recipe websites with highest appeal were polished and engaging to mothers/children, offered user-ratings/comments and were reachable from search engines. Results identified key recommendations: (1) understand the target audience; (2) aim to add healthy/customizable recipes to family "go-to' recipe rotations and understand the impact of generational influences (e.g. how mothers/grandmothers cooked) on family meals; and (3) create websites that meet target audience criteria. Seeking the target audience's input about the content/delivery of recipes is an important formative step for obesity-prevention projects that include healthy recipes.


Assuntos
Culinária , Refeições , Mães , Pobreza , Marketing Social , Adulto , Criança , Família , Grupos Focais , Assistência Alimentar , Humanos , Pessoa de Meia-Idade , Valor Nutritivo
11.
BMC Med Inform Decis Mak ; 19(1): 9, 2019 01 10.
Artigo em Inglês | MEDLINE | ID: mdl-30630480

RESUMO

BACKGROUND: We developed Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK), a web-based application designed to facilitate symptom screening by children receiving cancer treatments and access to supportive care clinical practice guidelines primarily by healthcare providers. The objective was to describe the initial development and evaluation of SPARK from the perspective of children. IMPLEMENTATION: Development and evaluation occurred in three phases: (1) low fidelity focused on functionality, (2) design focused on "look and feel" and (3) high fidelity confirmed functionality and design. Cognitive interviews were conducted with children receiving cancer treatments 8-18 years of age. Evaluation occurred after every five interviews and changes were guided by a Review Panel. Quantitative evaluation included SPARK ease of use and understandability of SPARK reports. RESULTS: The number of children included by phase were: low fidelity (n = 30), design (n = 30) and high fidelity (n = 30). Across phases, the median age was 13.2 (range 8.5 to 18.4) years. During low-fidelity and design phases, iterative refinements to SPARK improved website navigation, usability and likability from the perspective of children and established symptom report design. Among the last 10 children enrolled to high-fidelity testing, all (100%) understood how to complete symptom screening, access reports and interpret reports. Among these 10 respondents, all (100%) found SPARK easy to use and 9 (90%) found SPARK reports were easy to understand. CONCLUSIONS: SPARK is a web-based application which is usable and understandable, and it is now appropriate to use for research. Future efforts will focus on clinical implementation of SPARK.


Assuntos
Aplicações da Informática Médica , Neoplasias/diagnóstico , Neoplasias/terapia , Participação do Paciente , Design de Software , Adolescente , Criança , Feminino , Humanos , Internet , Masculino , Pesquisa Qualitativa
12.
Eur J Cancer Care (Engl) ; 28(1): e12882, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30015998

RESUMO

Most hospital websites have not been developed in collaboration with patients and, therefore, rarely take into account the preferences and abilities of older patients. This study describes the systematic redesign of an existing hospital website in a co-design process with patients and professional stakeholders (e.g. researchers, physicians, nurses, department heads, policymakers, website designers), with the aim to make it more user-friendly for older patients with colorectal cancer (CRC). The redesign process consisted of three phases, where (I) both existing content and design were evaluated among CRC patients; (II) a prototype website was developed based on these insights; which (III) was evaluated again before making final adjustments. Mixed research methods were used for the redesign process. Specifically, insights from existing literature, outcomes from qualitative and quantitative empirical studies conducted by our team, and expert knowledge from relevant stakeholders, were collected and discussed in multidisciplinary consensus meetings, and served as input for the redesigned website. While the existing website was evaluated poorly, the qualitative evaluation of the prototype website in phase 3 showed that the newly redesigned website was usable for older CRC patients. A practical roadmap on how to collaboratively redesign and optimise existing eHealth tools to make them suitable for and operational in clinical settings is provided.


Assuntos
Neoplasias Colorretais , Internet , Telemedicina , Interface Usuário-Computador , Adulto , Idoso , Feminino , Hospitais , Humanos , Masculino , Pessoa de Meia-Idade , Participação dos Interessados
13.
JMIR Form Res ; 2(1)2018.
Artigo em Inglês | MEDLINE | ID: mdl-30556053

RESUMO

Background: UCare is a new multimedia (website+booklet) intervention for women who want their male partner to quit their use of smokeless tobacco. The intervention is based on research showing that perceived partner responsiveness to social support is highest when the supporter conveys respect, understanding, and caring in their actions. The website included both didactic and interactive features, with optional video components, and special activities to help women develop empathy for nicotine addiction. The booklet reinforced the website content, encouraged women to use the website, and served both as a physical reminder of the intervention and a convenient way to share the information with her partner. Objective: The objective of this study was to describe the utilization and acceptability of a multimedia intervention among women seeking to support their partner in quitting smokeless tobacco. Lessons learned with respect to design considerations for online interventions are also summarized. Methods: We present the evaluation of the intervention components' use and usefulness in a randomized trial. Results: In the randomized clinical trial, more than 250,000 visits were made to the website in a 2-year period, with the vast majority from mobile devices. Of the 552 women randomized to receive the intervention, 96.9% (535/552) visited the website at least once, and 30.8% (170/552) completed the core website component, "The Basics." About half of the women (287/552) used the interactive "Take Notes" feature, and 37% (204/552) used the checklists. Few women used the post-Basics features. At 6 weeks, 40.7% (116/285) reported reading the printed and mailed booklet. Website and booklet use were uncorrelated. User ratings for the website and booklet were positive overall. Conclusions: Intervention website designers should consider that many users will access the program only once or twice, and many will not complete it. It is also important to distinguish between core and supplemental features and to consider whether the primary purpose is training or support. Furthermore, printed materials still have value. Trial Registration: ClinicalTrials.gov NCT01885221; https://clinicaltrials.gov/ct2/show/NCT01885221 (Archived by WebCite at http://www.webcitation.org/6zdIgGGtx).

14.
BMC Public Health ; 18(1): 1068, 2018 Aug 29.
Artigo em Inglês | MEDLINE | ID: mdl-30157819

RESUMO

BACKGROUND: Child obesity is a major public health challenge, increasing the risk of chronic medical conditions such as type 2 diabetes, metabolic syndrome, and hypertension. Among U.S. states, Tennessee has one of the highest rates of child obesity. Emerging communication technologies can help to deliver highly disseminable population-level interventions to improve health behavior. The aim of this paper is to report the implementation and the evaluation of the reach of Memphis FitKids, a web-based application, intended to promote healthy behaviors for families and children. METHODS: A community-level demonstration project, Memphis FitKids, was developed and implemented in Tennessee's Greater Memphis Area. This application ( www.memphisfitkids.org ) was designed for parents to assess their children's obesity risk through determinants such as weight, diet, physical activity, screen time, and sleep adequacy. A built-in "FitCheck" tool used this collected information to create a report with tailored recommendations on how to make healthy changes. A Geographic Information Systems component was implemented to suggest low-cost neighborhood resources that support a healthy lifestyle. A social marketing framework was used to develop and implement FitKids, and a Community Advisory Board with representatives from community partners (e.g., the YMCA of Memphis, the Pink Palace Family of Museums, and the Memphis Public Library) supported the implementation of the project. Five kiosks distributed in the community served as public access points to provide a broad reach across socioeconomic strata. Presentations at community events and the use of Facebook facilitated the promotion of FitKids. Website traffic and Facebook usage were evaluated with Google Analytics and Facebook Insights, respectively. RESULTS: In Tennessee, 33,505 users completed 38,429 FitCheck sessions between July 2014 and December 2016. Among these, 6763 sessions were completed at the five kiosks in the community. FitKids was presented at 112 community events and the social media posts reached 23,767 unique Facebook users. CONCLUSIONS: The Memphis FitKids demonstration project showed that web-based health tools may be a viable strategy to increase access to information about healthy weight and lifestyle options for families. Mobile-friendly web-based applications like Memphis FitKids may also serve health professionals in their efforts to support their clients in adopting healthy behaviors.


Assuntos
Promoção da Saúde/organização & administração , Aplicativos Móveis , Pais/psicologia , Obesidade Infantil/prevenção & controle , Adolescente , Criança , Pré-Escolar , Comportamentos Relacionados com a Saúde , Promoção da Saúde/métodos , Humanos , Estilo de Vida , Obesidade Infantil/epidemiologia , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Medição de Risco , Tennessee/epidemiologia , Adulto Jovem
15.
Midwifery ; 66: 17-24, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30107285

RESUMO

OBJECTIVE: Pregnancy and childbirth are associated with new needs for mothers, especially an eagerness for information. The aim of this study was to evaluate whether the Happy-Mums.be website meets the expectations and needs of its future users. DESIGN: After the development of the Happy-Mums.be website, it was submitted to parents and professionals and evaluated by an online survey, which consisted of the third round of an ongoing Delphi survey. SETTING AND PARTICIPANTS: The panel involved in the survey included parents (both mothers and fathers) and professionals (health professionals and early childhood professionals, orbiting mothers of children aged 0-2 years). FINDINGS: Twenty-eight parents and professionals participated in the third round of the Delphi survey. The participants indicated that Happy-Mums.be was useful and easy to use. They attributed a mean score of 8 out of 10 for the content, design and quality of the information on the Happy-Mums.be website. The majority of participants said that they would recommend the website both during pregnancy and the postnatal period. CONCLUSIONS: Happy-Mums.be meets the needs and expectations of parents and professionals in terms of both content and design. More specifically, the quality of the information found on Happy-Mums.be was judged to be significantly better than the information found on other websites.


Assuntos
Pessoal de Saúde/psicologia , Pais/psicologia , Mídias Sociais/normas , Adulto , Técnica Delphi , Feminino , Humanos , Lactente , Recém-Nascido , Internet , Masculino , Assistência Perinatal/métodos , Assistência Perinatal/normas , Gravidez , Mídias Sociais/instrumentação , Inquéritos e Questionários
16.
JMIR Cancer ; 4(2): e10073, 2018 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-29973334

RESUMO

BACKGROUND: Improving cancer survival in the UK, despite recent significant gains, remains a huge challenge. This can be attributed to, at least in part, patient and diagnostic delays, when patients are unaware they are suffering from a cancerous symptom and therefore do not visit a general practitioner promptly and/or when general practitioners fail to investigate the symptom or refer promptly. To raise awareness of symptoms that may potentially be indicative of underlying cancer among members of the public a symptom-based risk assessment model (developed for medical practitioner use and currently only used by some UK general practitioners) was utilized to develop a risk assessment tool to be offered to the public in community settings. Such a tool could help individuals recognize a symptom, which may potentially indicate cancer, faster and reduce the time taken to visit to their general practitioner. In this paper we report results about the design and development of the REACT (Risk Estimation for Additional Cancer Testing) website, a tool to be used in a community setting allowing users to complete an online questionnaire and obtain personalized cancer symptom-based risk estimation. OBJECTIVE: The objectives of this study are to evaluate (1) the acceptability of REACT among the public and health care practitioners, (2) the usability of the REACT website, (3) the presentation of personalized cancer risk on the website, and (4) potential approaches to adopt REACT into community health care services in the UK. METHODS: Our research consisted of multiple stages involving members of the public (n=39) and health care practitioners (n=20) in the UK. Data were collected between June 2017 and January 2018. User views were collected by (1) the "think-aloud" approach when participants using the website were asked to talk about their perceptions and feelings in relation to the website, and (2) self-reporting of website experiences through open-ended questionnaires. Data collection and data analysis continued simultaneously, allowing for website iterations between different points of data collection. RESULTS: The results demonstrate the need for such a tool. Participants suggest the best way to offer REACT is through a guided approach, with a health care practitioner (eg, pharmacist or National Health Service Health Check nurse) present during the process of risk evaluation. User feedback, which was generally consistent across members of public and health care practitioners, has been used to inform the development of the website. The most important aspects were: simplicity, ability to evaluate multiple cancers, content emphasizing an inviting community "feel," use (when possible) of layperson language in the symptom screening questionnaire, and a robust and positive approach to cancer communication relying on visual risk representation both with affected individuals and the entire population at risk. CONCLUSIONS: This study illustrates the benefits of involving public and stakeholders in developing and implementing a simple cancer symptom check tool within community. It also offers insights and design suggestions for user-friendly interfaces of similar health care Web-based services, especially those involving personalized risk estimation.

17.
Med Ref Serv Q ; 36(3): 220-228, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28714818

RESUMO

Online users seek help from virtual reference services via email, phone, texting, and live chat. Technologies have enabled new features in library websites to help make this service more accessible and effective. This article is an evaluation of an experimental pop-up live chat box on the website of a health sciences library to see whether the feature would enhance virtual reference services.


Assuntos
Bibliotecas Médicas , Serviços de Biblioteca , Correio Eletrônico , Internet
18.
Midwifery ; 53: 9-14, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28732193

RESUMO

OBJECTIVES: Mothers have a great need for information during the postnatal period. Trying to meet this need, mothers are increasingly turning to the Internet. Nevertheless, many women have stated that they often or always found that the information that they found on the Internet was incomplete or wrong. Many women therefore believe that health professionals should suggest reliable Internet websites for new mothers. The aim of this study was therefore to find a consensus on the content of a reliable and centralized website dedicated to mothers from the end of pregnancy to 1 year after childbirth. DESIGN: Two rounds of an online Delphi survey were used in this study. SETTING AND PARTICIPANTS: The panel of participants involved in the survey included parents (both mothers and fathers) and professionals (health professionals and professionals of early childhood for mothers of children aged 0 to 2 years). FINDINGS: Ninety-six parents and professionals participated in the first round (37.7 ± 9.76 years; 84.4% of women) and 78 in the second round. The majority of participants (94.6%) thought that a centralized website could help mothers from pregnancy to one year after childbirth. The content that the experts would like to find on a website were themed into five categories: "infants' information", "parents' information", "administrative information", "professionals' information" and "type of resources". In each category, experts highlighted the key words that they found important and should be reported on the website. The most important items highlighted by participants were baby's feeding/breastfeeding (92.8%), babies' needs (84.1%), baby blues (77.9%), postpartum depression (72.1%), management of the couple's relationship (72.1%), women's right to postnatal care (83.6%), links to reliable documents (63.9%) and a list of useful contacts (52.5%). CONCLUSIONS: This study helped to understand the questions that mothers ask themselves during the postpartum period and provided priorities to respond to their questions in the process of developing a website.


Assuntos
Educação de Pacientes como Assunto/métodos , Educação de Pacientes como Assunto/normas , Cuidado Pós-Natal/métodos , Adulto , Aleitamento Materno/métodos , Aleitamento Materno/psicologia , Técnica Delphi , Depressão Pós-Parto/diagnóstico , Depressão Pós-Parto/terapia , Feminino , Humanos , Lactente , Recém-Nascido , Internet , Mães/psicologia , Período Pós-Parto/psicologia , Gravidez , Inquéritos e Questionários
19.
JMIR Res Protoc ; 6(5): e103, 2017 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-28566266

RESUMO

BACKGROUND: Salt intake of schoolchildren in the Australian state of Victoria is high. To protect future cardiovascular health, interventions that seek to reduce the amount of salt in children's diets are required. OBJECTIVE: We sought to develop and pilot test a Web-based program (Digital Education to Limit Salt Intake in the Home [DELISH]) that aims to reduce dietary salt intake among schoolchildren and to improve child and parent knowledge, attitudes, and behaviors related to salt intake. This paper presents the DELISH study protocol, along with pilot findings used to inform the development of the program. METHODS: The DELISH program is a 5-week Web-based intervention that targets schoolchildren aged 7-10 years and their parents. This is a single-arm study with a pretest and posttest design. We will assess change in salt intake through analysis of 24-hour urinary sodium excretion. Children and parents will complete online surveys assessing knowledge, attitudes, and behaviors related to salt intake. We will assess feasibility of the program via process measures, which include metrics to describe intervention uptake (eg, number of children who complete Web-based sessions and of parents who view online newsletters) and evaluation surveys and interviews conducted with children, parents, and schoolteachers. The first 2 Web sessions developed for children were pilot tested in 19 children aged 8-12 years. RESULTS: Findings from pilot testing indicated that most children (session 1: 18/19, 95%; and session 2: 19/19, 100%) enjoyed completing each session and liked the inclusion of comic strips and interactive games. Commonly reported areas of improvement related to sessions being text and content heavy. Based on these findings, we simplified sessions and developed 3 additional sessions for use in the DELISH program. The DELISH program was implemented during June-December 2016. We expect to have results from this study at the end of 2017. CONCLUSIONS: To our knowledge, this is the first Australian study to examine the effectiveness of a Web-based program to reduce salt intake among children in primary school. If shown to be acceptable and effective in lowering salt intake, the DELISH program could be tested using a more rigorous randomized controlled trial design.

20.
Med Ref Serv Q ; 35(1): 1-15, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26794192

RESUMO

User testing, a method of assessing website usability, can be a cost-effective and easily administered process to collect information about a website's effectiveness. A user experience (UX) team at an academic health sciences library has employed user testing for over three years to help refine the library's home page. Test methodology used in-person testers using the "think aloud" method to complete tasks on the home page. Review of test results revealed problem areas of the design and redesign; further testing was effective in refining the page. User testing has proved to be a valuable method to engage users and provide feedback to continually improve the library's home page.


Assuntos
Internet , Bibliotecas Médicas , Interface Usuário-Computador , Comportamento do Consumidor , Avaliação de Programas e Projetos de Saúde
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