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1.
JMIR Mhealth Uhealth ; 12: e55548, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38875700

RESUMO

BACKGROUND: Mobile health (mHealth) interventions that promote healthy behaviors or mindsets are a promising avenue to reach vulnerable or at-risk groups. In designing such mHealth interventions, authentic representation of intended participants is essential. The COVID-19 pandemic served as a catalyst for innovation in remote user-centered research methods. The capability of such research methods to effectively engage with vulnerable participants requires inquiry into practice to determine the suitability and appropriateness of these methods. OBJECTIVE: In this study, we aimed to explore opportunities and considerations that emerged from involving vulnerable user groups remotely when designing mHealth interventions. Implications and recommendations are presented for researchers and practitioners conducting remote user-centered research with vulnerable populations. METHODS: Remote user-centered research practices from 2 projects involving vulnerable populations in Norway and Australia were examined retrospectively using visual mapping and a reflection-on-action approach. The projects engaged low-income and unemployed groups during the COVID-19 pandemic in user-based evaluation and testing of interactive, web-based mHealth interventions. RESULTS: Opportunities and considerations were identified as (1) reduced barriers to research inclusion; (2) digital literacy transition; (3) contextualized insights: a window into people's lives; (4) seamless enactment of roles; and (5) increased flexibility for researchers and participants. CONCLUSIONS: Our findings support the capability and suitability of remote user methods to engage with users from vulnerable groups. Remote methods facilitate recruitment, ease the burden of research participation, level out power imbalances, and provide a rich and relevant environment for user-centered evaluation of mHealth interventions. There is a potential for a much more agile research practice. Future research should consider the privacy impacts of increased access to participants' environment via webcams and screen share and how technology mediates participants' action in terms of privacy. The development of support procedures and tools for remote testing of mHealth apps with user participants will be crucial to capitalize on efficiency gains and better protect participants' privacy.


Assuntos
COVID-19 , Telemedicina , Populações Vulneráveis , Humanos , Estudos Retrospectivos , Populações Vulneráveis/psicologia , Populações Vulneráveis/estatística & dados numéricos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Austrália , Noruega , Pandemias , Feminino , SARS-CoV-2 , Masculino , Adulto
2.
J Clin Epidemiol ; 172: 111399, 2024 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-38810842

RESUMO

OBJECTIVES: To evaluate and improve "Making Alternative Treatment Choices Intuitive and Trustworthy" (MATCH-IT)-a digital, interactive decision support tool displaying structured evidence summaries for multiple comparisons-to help physicians interpret and apply evidence from network meta-analysis (NMA) for their clinical decision-making. STUDY DESIGN AND SETTING: We conducted a qualitative user testing study, applying principles from user-centered design in an iterative development process. We recruited a convenience sample of practicing physicians in Norway, Belgium, and Canada, and asked them to interpret structured evidence summaries for multiple comparisons-linked to clinical guideline recommendations-displayed in MATCH-IT. User testing included (a) introduction of a clinical scenario, (b) a think-aloud session with participant-tool interaction, and (c) a semistructured interview. We video recorded, transcribed, and analyzed user tests using directed content analysis. The results informed new updates in MATCH-IT. RESULTS: Distributed across 5 development cycles we tested MATCH-IT with 26 physicians. Of these, 24 (94%) reported either no or sparse prior experience with interpretation of NMA. Physicians perceived MATCH-IT as easy to interpret and navigate, and appreciated its ability to provide an overview of the evidence. Visualization of effects in pictograms and inclusion of information on burden of treatment ("practical issues") were highlighted as potentially useful features in interacting with patients. We also identified problems, including undiscovered functionalities (drag and drop), suboptimal tutorial, and cumbersome navigation of the tool. In addition, physicians wanted definition/explanation of key terms (eg, outcomes and "certainty"), and there were concerns that overwhelming evidence from a large NMA would complicate applicability to clinical practice. This led to several updates with development of a new start page, tutorial, updated user interface for more efficient maneuvering, solutions to display definition of key terms and a "frequently asked questions" section. To facilitate interpretation of large networks, we improved categorization of results using color coding and added filtering functionality. These modifications allowed physicians to focus on interventions of interest and reduce information overload. CONCLUSION: This study provides proof of concept that physicians can use MATCH-IT to understand NMA evidence. Key features of MATCH-IT in a clinical context include providing an overview of the evidence, visualization of effects, and the display of information on burden of treatments. However, unfamiliarity with the Grading of Recommendations Assessment, Development and Evaluation concepts, time constraints, and accessibility at the point of care may be challenges for use. To what extent our results are transferable to real-world clinical contexts remains to be explored.

3.
JMIR Hum Factors ; 11: e45115, 2024 May 10.
Artigo em Inglês | MEDLINE | ID: mdl-38728071

RESUMO

BACKGROUND: Health care lags in digital transformation, despite the potential of technology to improve the well-being of individuals. The COVID-19 pandemic has accelerated the uptake of technology in health care and increased individuals' willingness to perform self-management using technology. A web-based service, Directlab Online, provides consumers with direct digital access to diagnostic test packages, which can digitally support the self-management of health. OBJECTIVE: This study aims to identify the facilitators, barriers, and needs of Directlab Online, a self-management service for web-based access to diagnostic testing. METHODS: A qualitative method was used from a potential user's perspective. The needs and future needs for, facilitators of, and barriers to the use of Directlab Online were evaluated. Semistructured focus group meetings were conducted in 2022. Two focus groups were focused on sexually transmitted infection test packages and 2 were focused on prevention test packages. Data analysis was performed according to the principles of the Framework Method. The Consolidated Framework for Implementation Research was used to categorize the facilitators and barriers. RESULTS: In total, 19 participants, with a mean age of 34.32 (SD 14.70) years, participated in the focus groups. Important barriers were a lack of privacy information, too much and difficult information, and a commercial appearance. Important facilitators were the right amount of information, the right kind of tests, and the involvement of a health care professional. The need for a service such as Directlab Online was to ensure its availability for users' health and to maintain their health. CONCLUSIONS: According to the participants, facilitators and barriers were comprehension of the information, the goal of the website, and the overall appearance of the service. Although the service was developed in cocreation with health care professionals and users, the needs did not align. The users preferred understandable and adequate, but not excessive, information. In addition, they preferred other types of tests to be available on the service. For future research, it would be beneficial to focus on cocreation between the involved medical professionals and users to develop, improve, and implement a service such as Directlab Online.


Assuntos
Autogestão , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Grupos Focais , Pesquisa Qualitativa , Autogestão/métodos , Telemedicina/métodos
4.
JMIR Pediatr Parent ; 7: e49952, 2024 02 22.
Artigo em Inglês | MEDLINE | ID: mdl-38386377

RESUMO

BACKGROUND: Successful national safer sleep campaigns in the United Kingdom have lowered the death rates from sudden unexpected death in infancy (SUDI) over the past 3 decades, but deaths persist in socioeconomically deprived families. The circumstances of current deaths suggest that improvements in support for some families to follow safer sleep advice more consistently could save lives. OBJECTIVE: This study aimed to develop and evaluate a risk assessment and planning tool designed to improve the uptake of safer sleep advice in families with infants at increased risk of SUDI. METHODS: A co-design approach was used to develop the prototype interface of a web-based tool with 2 parts: an individual SUDI risk assessment at birth and a downloadable plan for safety during times of disruption. The advice contained within the tool is concordant with national guidance from the Lullaby Trust, the United Nations International Children's Emergency Fund (UNICEF), and the National Institute for Health and Care Excellence. User testing of the prototype tool was conducted by inviting health visitors, midwives, and family nurses to use it with families eligible for additional support. Qualitative interviews with health professionals and families allowed for iterative changes to the tool and for insights into its function and influence on parental behavior. RESULTS: A total of 22 health professionals were enrolled in the study, of whom 20 (91%) were interviewed. They reported appreciating the functionality of the tool, which allowed them to identify at-risk families for further support. They felt that the tool improved how they communicated about risks with families. They suggested expanding its use to include relevance in the antenatal period and having versions available in languages other than English. They reported using the tool with 58 families; 20 parents gave consent to be interviewed by the research team about their experiences with the tool. Families were positive about the tool, appreciated the trustworthy information, and felt that it was useful and appropriate and that the plans for specific infant sleeps would be of benefit to them and other family members. CONCLUSIONS: Our tool combines risk assessment and safety planning, both of which have the potential to improve the uptake of lifesaving advice. Refinements to the tool based on these findings have ensured that the tool is ready for further evaluation in a larger study before being rolled out to families with infants at increased risk.

5.
BMC Med ; 21(1): 425, 2023 11 08.
Artigo em Inglês | MEDLINE | ID: mdl-37940944

RESUMO

BACKGROUND: People need high-quality information to make decisions about research participation. Providing information in written format alone is conventional but may not be the most effective and acceptable approach. We developed a structure for the presentation of information using multimedia which included generic and trial-specific content. Our aim was to embed 'Studies Within A Trial' (SWATs) across multiple ongoing trials to test whether multimedia presentation of patient information led to better rates of recruitment. METHODS: Five trials included a SWAT and randomised their participants to receive a multimedia presentation alongside standard information, or standard written information alone. We collected data on trial recruitment, acceptance and retention and analysed the pooled results using random effects meta-analysis, with the primary outcome defined as the proportion of participants randomised following an invitation to take part. RESULTS: Five SWATs provided data on the primary outcome of proportion of participants randomised. Multimedia alongside written information results in little or no difference in recruitment rates (pooled odds ratio = 0.96, 95% CI: 0.79 to 1.17, p-value = 0.671, I2 = 0%). There was no effect on any other outcomes. CONCLUSIONS: Multimedia alongside written information did not improve trial recruitment rates. TRIAL REGISTRATION: ISRCTN71952900, ISRCTN 06710391, ISRCTN 17160087, ISRCTN05926847, ISRCTN62869767.


Assuntos
Multimídia , Projetos de Pesquisa , Humanos , Seleção de Pacientes , Razão de Chances
6.
JMIR Form Res ; 7: e45986, 2023 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-37610807

RESUMO

BACKGROUND: The mainstay of treatment for cervical dystonia (CD) is regular botulinum toxin injections every 3-4 months. Clinical evaluation of response is dependent on the patient's recall of how well symptoms responded to the previous injection. A mobile health app could assist both patients and health care professionals to monitor treatment benefits and side effects to assist with the selection of muscle and toxin dose to be injected at the next visit. The DystoniaDiary is a bespoke electronic health journal for monitoring symptoms of CD and response to treatment. OBJECTIVE: The objective of this study was to assess the acceptability and utility of the DystoniaDiary in patients with CD treated with botulinum toxins as part of their usual care. METHODS: In this open-label, single-center, single-arm observational study, patients attending a botulinum toxin injection clinic were invited to download the DystoniaDiary app. Patients selected up to 3 of their most troublesome CD symptoms (from a predefined list) and were prompted every 3 days to rate the control of these symptoms on a scale from 0 (very badly) to 100 (very well). Dates of onset and wearing off of response to injected botulinum toxin and responses to the Cervical Dystonia Impact Profile (CDIP-58) questionnaire at baseline and week 6 were also recorded in the app. RESULTS: A total of 34 patients installed DystoniaDiary. Twenty-five patients (25/34, 74%) recorded data for ≥12 weeks and 21 patients (21/34, 62%) for ≥16 weeks. Median time between the first and last data input was 140 days with a median of 13 recordings per patient. User experience questionnaires at weeks 4 and 12 (20 respondents) indicated that the majority of respondents found the DystoniaDiary app easy to install and use, liked using it, would recommend it to others (19/20), and wished to continue using it (16/20). A smaller proportion indicated that the DystoniaDiary gave a greater sense of control in managing their CD (13/20). There was interindividual variation in patients' perceptions of control of their symptoms after botulinum toxin injection. Response to treatment was apparent in the symptom control scores for some patients, whereas the severity of other patients' symptoms did not appear to change after treatment. CONCLUSIONS: This observational study demonstrated that the DystoniaDiary app was perceived as useful and acceptable for a large proportion of this sample of patients with CD attending a botulinum toxin clinic. Patients with CD appear to be willing to regularly record symptom severity for at least the duration of a botulinum injection treatment cycle (12-16 weeks). This app may be useful in monitoring and optimizing individual patient responses to botulinum toxin injection.

7.
JMIR Hum Factors ; 10: e42654, 2023 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-37440298

RESUMO

BACKGROUND: Methadone, a cornerstone of opioid use disorder treatments for many decades, is an essential tool for combatting the opioid epidemic. However, requirements for observing methadone dosing in person through direct observed therapy (DOT) impose significant barriers for many patients. Digital technology can facilitate remote DOT, which could reduce barriers to methadone treatment. Currently, there are limited data on the usability of such technology among patients and counselors in methadone treatment settings. OBJECTIVE: The primary objective of this study was to assess the workload, usability, and engagement of a video-based DOT mobile app for patients with opioid use disorder receiving methadone treatment. The secondary objective was to assess the workload, usability, and engagement of the provider-facing app portal used by counselors. METHODS: Patients (n=12) and counselors (n=3) who previously tried video DOT for methadone through a smartphone app in an opioid treatment program participated in usability testing sessions. Participants completed essential tasks for video DOT, then provided ratings of workload (NASA Task Load Index), usability (modified System Usability Scale), and engagement (modified Engagement Scale) with the core features of the video DOT program. RESULTS: Patients and counselors reported low mental, physical, and temporal demands, successful performance, low effort, and low frustration associated with activities. Patients reported high usability (mean 85, SD 9.5) and engagement (mean 3.8, SD 1.1); counselors reported moderate usability (mean 43.3, SD 17.7) and engagement (mean 2.81, SD 0.63). CONCLUSIONS: A mobile health app that facilitates video-based DOT for methadone required a low workload for patients and counselors and was highly usable for patients in an opioid treatment program; however, there are opportunities to improve usability and engagement for the counselor-facing portal.

8.
PEC Innov ; 2: 100162, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37384149

RESUMO

Objective: The Sydney Health Literacy Lab (SHeLL) Editor is an online text-editing tool that provides real-time assessment and feedback on written health information (assesses grade reading score, complex language, passive voice). This study aimed to explore how the design could be further enhanced to help health information providers interpret and act on automated feedback. Methods: The prototype was iteratively refined across four rounds of user-testing with health services staff (N = 20). Participants took part in online interviews and a brief follow-up survey using validated usability scales (System Usability Scale, Technology Acceptance Model). After each round, Yardley's (2021) optimisation criteria guided which changes would be implemented. Results: Participants rated the Editor as having adequate usability (M = 82.8 out of 100, SD = 13.5). Most modifications sought to reduce information overload (e.g. simplifying instructions for new users) or make feedback motivating and actionable (e.g. using frequent incremental feedback to highlight changes to the text altered assessment scores). Conclusion: terative user-testing was critical to balancing academic values and the practical needs of the Editor's target users. The final version emphasises actionable real-time feedback and not just assessment. Innovation: The Editor is a new tool that will help health information providers apply health literacy principles to written text.

9.
Digit Health ; 9: 20552076231170696, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37152241

RESUMO

Objectives: We aimed to develop a video animation knowledge translation (KT) resource to explain the purpose, use and importance of evidence synthesis to the public regarding healthcare decision-making. Methods: We drew on a user-centred design approach to develop a spoken animated video (SAV) by conducting two cycles of idea generation, prototyping, user testing, analysis, and refinement. Six researchers identified the initial key messages of the SAV and informed the first draft of the storyboard and script. Seven members of the public provided input on this draft and the key messages through think-aloud interviews, which we used to develop an SAV prototype. Seven additional members of the public participated in think-aloud interviews while watching the video prototype. All members of the public also completed a questionnaire on perceived usefulness, desirability, clarity and credibility. We subsequently synthesised all data to develop the final SAV. Results: Researchers identified the initial key messages as 1) the importance of evidence synthesis, 2) what an evidence synthesis is and 3) how evidence synthesis can impact healthcare decision-making. Members of the public rated the initial video prototype as 9/10 for usefulness, 8/10 for desirability, 8/10 for clarity and 9/10 for credibility. Using their guidance and feedback, we produced a three-and-a-half-minute video animation. The video was uploaded on YouTube, has since been translated into two languages, and viewed over 12,000 times to date. Conclusions: Drawing on user-centred design methods provided a structured and transparent approach to the development of our SAV. Involving members of the public enhanced the credibility and usefulness of the resource. Future work could explore involving the public from the outset to identify key messages in developing KT resources explaining methodological topics. This study describes the systematic development of a KT resource with limited resources and provides transferrable learnings for others wishing to do similar.

10.
BMC Med Inform Decis Mak ; 23(1): 97, 2023 05 22.
Artigo em Inglês | MEDLINE | ID: mdl-37217915

RESUMO

BACKGROUND: Encounter decision aids (EDAs) are tools that can support shared decision making (SDM), up to the clinical encounter. However, adoption of these tools has been limited, as they are hard to produce, to keep up-to-date, and are not available for many decisions. The MAGIC Evidence Ecosystem Foundation has created a new generation of decision aids that are generically produced along digitally structured guidelines and evidence summaries, in an electronic authoring and publication platform (MAGICapp). We explored general practitioners' (GPs) and patients' experiences with five selected decision aids linked to BMJ Rapid Recommendations in primary care. METHODS: We applied a qualitative user testing design to evaluate user experiences for both GPs and patients. We translated five EDAs relevant to primary care, and observed the clinical encounters of 11 GPs when they used the EDA with their patients. We conducted a semi-structured interview with each patient after the consultation and a think-aloud interview with each GPs after multiple consultations. We used the Qualitative Analysis Guide (QUAGOL) for data analysis. RESULTS: Direct observations and user testing analysis of 31 clinical encounters showed an overall positive experience. The EDAs created better involvement in decision making and resulted in meaningful insights for patients and clinicians. The design and its interactive, multilayered structure made the tool enjoyable and well-organized. Difficult terminology, scales and numbers hindered understanding of certain information, which was sometimes perceived as too specialized or even intimidating. GPs thought the EDA was not suitable for every patient. They perceived a learning curve was required and the need for time investment was a concern. The EDAs were considered trustworthy as they were provided by a credible source. CONCLUSIONS: This study showed that EDAs can be useful tools in primary care by supporting actual shared decision making and enhancing patient involvement. The graphical approach and clear representation help patients better understand their options. To overcome barriers such as health literacy and GPs attitudes, effort is still needed to make the EDAs as accessible, intuitive and inclusive as possible through use of plain language, uniform design, rapid access and training. TRIAL REGISTRATION: The study protocol was approved by the The Research Ethics Committee UZ/KU Leuven (Belgium) on 31-10-2019 with reference number MP011977.


Assuntos
Ecossistema , Clínicos Gerais , Humanos , Tomada de Decisões , Técnicas de Apoio para a Decisão , Participação do Paciente/métodos , Atenção Primária à Saúde/métodos , Guias de Prática Clínica como Assunto
11.
JMIR Res Protoc ; 12: e42983, 2023 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-37256669

RESUMO

BACKGROUND: Sexual and gender minority (SGM) adolescents and young adults (AYAs) are at increased risk of HIV infection, particularly in the Southern United States. Despite the availability of effective biomedical prevention strategies, such as pre-exposure prophylaxis (PrEP), access and uptake remain low among SGM AYAs. In response, the Louisiana Department of Health initiated the LA TelePrEP Program, which leverages the power of telemedicine to connect Louisiana residents to PrEP. A virtual TelePrEP Navigator guides users through the enrollment process, answers questions, schedules appointments, and facilitates lab testing and medication delivery. To increase the participation of SGM AYAs in the program, the TelePrEP program partnered with researchers to develop a chatbot that would facilitate access to the program and support navigator functions. Chatbots are capable of carrying out many functions that reduce employee workload, and despite their successful use in health care and public health, they are relatively new to HIV prevention. OBJECTIVE: In this paper, we describe the iterative and community-engaged process that we used to develop an SMS text messaging-based chatbot tailored to SGM AYAs that would support navigator functions and disseminate PrEP-related information. METHODS: Our process was comprised of 2 phases: conceptualization and development. In the conceptualization phase, aspects of navigator responsibilities, program logistics, and user interactions to prioritize in chatbot programming (eg, scheduling appointments and answering questions) were identified. We also selected a commercially available chatbot platform that could execute these functions and could be programmed with minimal coding experience. In the development phase, we engaged Department of Health staff and SGM AYAs within our professional and personal networks. Five different rounds of testing were conducted with various groups to evaluate each iteration of the chatbot. After each iteration of the testing process, the research team met to discuss feedback, guide the programmer on incorporating modifications, and re-evaluate the chatbot's functionality. RESULTS: Through our highly collaborative and community-engaged process, a rule-based chatbot with artificial intelligence components was successfully created. We gained important knowledge that could advance future chatbot development efforts for HIV prevention. Key to the PrEPBot's success was resolving issues that hampered the user experience, like asking unnecessary questions, responding too quickly, and misunderstanding user input. CONCLUSIONS: HIV prevention researchers can feasibly and efficiently program a rule-based chatbot with the assistance of commercially available tools. Our iterative process of engaging researchers, program personnel, and different subgroups of SGM AYAs to obtain input was key to successful chatbot development. If the results of this pilot trial show that the chatbot is feasible and acceptable to SGM AYAs, future HIV researchers and practitioners could consider incorporating chatbots as part of their programs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/42983.

12.
JMIR Form Res ; 7: e41114, 2023 05 22.
Artigo em Inglês | MEDLINE | ID: mdl-37213198

RESUMO

BACKGROUND: Despite the unequivocal evidence demonstrating the benefits of being physically active, many people do not meet the recommended guidelines of at least 150 minutes of moderate- to vigorous-intensity physical activity per week. This can be changed with the development and implementation of innovative interventions. The use of mobile health (mHealth) technologies has been suggested as a mechanism to offer people innovative health behavior change interventions. OBJECTIVE: This study aims to outline the systematic, theory-driven processes and user testing applied to the development of a smartphone-based physical activity app (SnackApp) to promote participation in a novel physical activity intervention called Snacktivity. The acceptability of the app was explored and reported. METHODS: Intervention mapping involves a 6-step process, the first 4 of which were presented in this study. These steps were used to develop the SnackApp for use within the Snacktivity intervention. The first step involved a needs assessment, which included composing an expert planning group, patient and public involvement group, and gathering the views of the public on Snacktivity and the public perception of the use of wearable technology to support Snacktivity. This first step aimed to determine the overall purpose of the Snacktivity intervention. Steps 2 to 4 involved determining the intervention objectives, the behavior change theory and techniques on which the intervention is based, and the development of the intervention resources (ie, SnackApp). After the completion of steps 1 to 3 of the intervention mapping process, the SnackApp was developed and linked to a commercial physical activity tracker (Fitbit Versa Lite) for the automated capture of physical activity. SnackApp includes provisions for goal setting, activity planning, and social support. Stage 4 involved users (inactive adults, N=15) testing the SnackApp for 28 days. App engagement (mobile app use analytics) was analyzed to determine app use and to inform the further development of SnackApp. RESULTS: Over the study period (step 4), participants engaged with SnackApp an average of 77 (SD 80) times. On average, participants used the SnackApp for 12.6 (SD 47) minutes per week, with most of the time spent on the SnackApp dashboard and engaging, on average, 14 (SD 12.1) times, lasting 7 to 8 minutes per week. Overall, male participants used the SnackApp more than female participants did. The app rating score was 3.5 (SD 0.6) out of 5, suggesting that SnackApp was rated as fair to good. CONCLUSIONS: This study outlines and reports data regarding the development of an innovative mHealth app using a systematic, theory-driven framework. This approach can guide the development of future mHealth programs. User testing of the SnackApp suggested that physically inactive adults will engage with the SnackApp, indicating its applicability of use in the Snacktivity physical activity intervention.

13.
Palliat Med ; 37(5): 771-781, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-37002562

RESUMO

BACKGROUND: Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia. AIM: To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia. DESIGN: Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019-2020. Phase-1 interviews (n = 40), Phase-2 focus groups (n = 3) and interviews (n = 10). SETTING/PARTICIPANTS: Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers. RESULTS: Co-design activities lead to development of the prototype 'Ayzot' application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings. CONCLUSION: This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation.


Assuntos
Telefone Celular , Cuidados Paliativos na Terminalidade da Vida , Aplicativos Móveis , Humanos , Cuidados Paliativos/métodos , Atenção à Saúde
14.
Disabil Rehabil Assist Technol ; : 1-13, 2023 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-37086036

RESUMO

PURPOSE: This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population. METHODS: The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis. RESULTS: Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design. CONCLUSIONS: The interplay between a website's content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population.


People with cognitive impairment can provide useful feedback on design and accessibility of websites, and their input should be obtained when developing digital applications for this group.This paper provides practical suggestions for website design features to improve function, legibility and navigation of websites for older people and people living with dementia.

15.
Sci Total Environ ; 857(Pt 1): 159178, 2023 Jan 20.
Artigo em Inglês | MEDLINE | ID: mdl-36202366

RESUMO

Urine diversion in a No-Mix Toilet is a promising approach for sustainable fertilizers and reduction of the nutrient load for wastewater treatment; however, user adoption remains a challenge. This study evaluates the Urine Trap, a passive No-Mix toilet design based on the teapot effect, wherein the urine stream inlet is invisible to the user and therefore it does not impact the user experience for increased adoption. This study evaluated the nutrient separation performance of a Urine Trap flush toilet in a bathroom shared by women in two sites in India. Over three different testing periods, 841 uses of this squat plate were recorded in 50 days. Analytical measurements found 36 % separation efficiency for total nitrogen (TN). While effective, the Urine Trap under test by users did not yield a 70-80 % TN separation efficiency observed under engineering characterization. High temporal resolution data from sensors on waste collection tanks, the opening of the bathroom door, and cleansing water flow were used to gain insights into hygiene practices. The data showed a frequent habit of wetting the squat plate during physiological excretion, a hygienic practice that eases cleaning but degrades the teapot separation effect of the Urine Trap design. By using sensors, we demonstrate a method to non-invasively gain quantitative insights into hygiene practices to inform sanitation technologies deployment strategies for improved outcomes.


Assuntos
Aparelho Sanitário , Purificação da Água , Feminino , Humanos , Banheiros , Saneamento , Purificação da Água/métodos , Fertilizantes , Nitrogênio , Urina
16.
JMIR Bioinform Biotechnol ; 4: e45370, 2023 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-38935961

RESUMO

BACKGROUND: Genetic testing is essential to identify research participants for clinical trials enrolling people with Parkinson disease (PD) carrying a variant in the glucocerebrosidase (GBA) or leucine-rich repeat kinase 2 (LRRK2) genes. The limited availability of professionals trained in neurogenetics or genetic counseling is a major barrier to increased testing. Telehealth solutions to increase access to genetics education can help address issues around counselor availability and offer options to patients and family members. OBJECTIVE: As an alternative to pretest genetic counseling, we developed a web-based genetics education tool focused on GBA and LRRK2 testing for PD called the Interactive Multimedia Approach to Genetic Counseling to Inform and Educate in Parkinson's Disease (IMAGINE-PD) and conducted user testing and usability testing. The objective was to conduct user and usability testing to obtain stakeholder feedback to improve IMAGINE-PD. METHODS: Genetic counselors and PD and neurogenetics subject matter experts developed content for IMAGINE-PD specifically focused on GBA and LRRK2 genetic testing. Structured interviews were conducted with 11 movement disorder specialists and 13 patients with PD to evaluate the content of IMAGINE-PD in user testing and with 12 patients with PD to evaluate the usability of a high-fidelity prototype according to the US Department of Health and Human Services Research-Based Web Design & Usability Guidelines. Qualitative data analysis informed changes to create a final version of IMAGINE-PD. RESULTS: Qualitative data were reviewed by 3 evaluators. Themes were identified from feedback data of movement disorder specialists and patients with PD in user testing in 3 areas: content such as the topics covered, function such as website navigation, and appearance such as pictures and colors. Similarly, qualitative analysis of usability testing feedback identified additional themes in these 3 areas. Key points of feedback were determined by consensus among reviewers considering the importance of the comment and the frequency of similar comments. Refinements were made to IMAGINE-PD based on consensus recommendations by evaluators within each theme at both user testing and usability testing phases to create a final version of IMAGINE-PD. CONCLUSIONS: User testing for content review and usability testing have informed refinements to IMAGINE-PD to develop this focused, genetics education tool for GBA and LRRK2 testing. Comparison of this stakeholder-informed intervention to standard telegenetic counseling approaches is ongoing.

17.
Psychol Health Med ; 27(sup1): 107-123, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35980251

RESUMO

The parenting evidence base is well established, and the question is how best to transfer the evidence to an app. App-based interventions could expand access to evidence-based parenting support; however, current provision lacks rigorous evidence, shows low user engagement, and is primarily for commercial gain. This study aimed at testing the feasibility and acceptability of ParentApp for Teens, an open-source, mobile parenting intervention application based on the Parenting for Lifelong Health Teens programme targeting parents of teens. The objective was to gather feedback from users on the relevance, acceptability, satisfaction, and usability of ParentApp for Teens across contexts in Africa, and subsequently, use the feedback to improve the app experience for target users. Caregivers and their adolescents aged 10-17 years, from nine different countries, were purposefully selected for user testing. The study involved 18 caregivers participating in the programme by using the app for 13 weeks and providing feedback on it through remote, semi-structured interviews that explored the app's acceptability and usability. Adolescents of six caregivers were also interviewed. Data were analysed thematically. Participants expressed a high level of satisfaction with the app's content and described it as easy to use and useful. However, views on the app's animated characters varied. Although effectiveness was not a primary aim of the user testing, several caregivers commented that they perceived their participation in the study had helped to enforce positive parenting skills in themselves. Adolescents' data supported the caregivers' reports of less harsh parenting and improved relationships between caregivers and their children due to the caregivers' participation in the study. Findings indicate the app could be relevant and acceptable in participants' communities, but possible barriers to its uptake may be lack of android smartphones, lack of data for app download, and inability of non-literate caregivers to read the content.


Assuntos
Aplicativos Móveis , Poder Familiar , Adolescente , Criança , Humanos , Satisfação Pessoal , Smartphone , Pais
18.
Univers Access Inf Soc ; : 1-21, 2022 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-36032410

RESUMO

The web has become a fundamental tool for carrying out many activities spanning from education to work and private life. For this reason, it must be accessible to every user regardless of any form of impairment or disability. Images on the web are a primary means for communicating information, and specific HTML elements were defined to enrich images with textual descriptions, which can be read aloud by screen readers or rendered by braille displays. A relevant problem is that adding a text describing each image published on a website is a demanding task requiring a non-negligible effort for web developers. Several tools based on machine learning have emerged, which can automatically return descriptions for the images. In this work, we evaluate the correctness of their outputs by comparing the generated descriptions with human-defined references. More specifically, we selected 60 images from Wikipedia and their corresponding descriptions as defined by Wikipedia contributors. We then generated the corresponding descriptions employing four state of the art tools (Azure Computer Vision Engine, Amazon Rekognition, Cloudsight, and Auto Alt-Text for Google Chrome) and asked 76 computer science students to blindly evaluate the perceived correctness of the descriptions without being aware of their source. The results show that the descriptions available in Wikipedia are still perceived as the best ones. However, some tools generate good results for specific categories of images, and they can represent proper candidates for the automated and massive addition of image descriptions to websites, helping to increase the accessibility level of the web drastically.

19.
Genet Med ; 24(8): 1684-1696, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35522238

RESUMO

PURPOSE: Our objective was to apply a user-centered design process to identify phrases, graphics, and ways of communicating numerical risks that could be used to help patients understand their cancer risk and next steps on receiving BRCA1 genetic test results (positive, negative, and variants of uncertain significance). METHODS: The first phase of the study, a user-centered design process, consisted of 4 rounds of interviews (N = 42, including 13 health care professionals and 16 patients having undergone BRCA testing). The second was a randomized, between-participants experimental study of 456 United Kingdom residents that compared the resulting reports to reports used in a United Kingdom national genomic laboratory hub. Outcomes were subjective and objective comprehension, communication efficacy, actionability, and perceived risk. RESULTS: Subjective comprehension, communication efficacy, and actionability were all higher for the user-centered reports, with no difference in perceived risk. Comprehension of participants viewing user-centered reports was significantly better on 2 items, directionally (but not significantly) better on 6 items, and directionally (but not significantly) worse on 2 items. CONCLUSION: Our results imply that user-centered design is a promising approach for developing materials about complex genetic risks. We suggest wordings that are likely to lead to improved comprehension when communicating BRCA-associated risks.


Assuntos
Testes Genéticos , Design Centrado no Usuário , Proteína BRCA1/genética , Comunicação , Humanos , Fatores de Risco , Reino Unido
20.
J Clin Epidemiol ; 147: 60-68, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35364232

RESUMO

OBJECTIVES: We conceptualize patient values and preferences as the relative importance of health outcomes (RIO) which are often obtained through utility elicitation research. A transparent and structured approach to present synthesized RIO evidence and the certainty of this evidence is needed. This study aims to adapt the summary of findings (SoF) table to describe the RIO. STUDY DESIGN AND SETTING: We performed three interactive workshops with a protype version of the SoF table for RIO, evidence adapted from the SoF table for intervention effects. We then tested the new format through semi-structured interviews with professionals who interpret RIO evidence (e.g., systematic review authors and guideline developers). RESULTS: We adapted the SoF table for the presentation of RIO evidence. This SoF table may be easy to use, but bears one risk: some participants misunderstood the utility information and the variability around the RIO. We added a visual analogue scale to clarify the concept of utilities. CONCLUSION: Through a multi-stage process including brainstorming sessions and interviews, we adapted the SoF table to present RIO evidence. This table may enhance understanding of evidence synthesis of values and preferences, facilitating the incorporation of this type of evidence in decision-making.


Assuntos
Medicina Baseada em Evidências , Humanos , Medição da Dor
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