scholarly journals Integrating a Web-Based Self-Management Tool (Managing Joint Pain on the Web and Through Resources) for People With Osteoarthritis-Related Joint Pain With a Web-Based Social Network Support Tool (Generating Engagement in Network Involvement): Design, Development, and Early Evaluation

10.2196/18565 ◽  
2020 ◽  
Vol 4 (11) ◽  
pp. e18565
Author(s):  
Paul Clarkson ◽  
Ivaylo Vassilev ◽  
Anne Rogers ◽  
Charlotte Brooks ◽  
Nicky Wilson ◽  
...  
Keyword(s):  
Social Network ◽  
Focus Groups ◽  
Goal Setting ◽  
Joint Pain ◽  
Management Tool ◽  
Self Management ◽  
Small Scale ◽  
Web Based ◽  
Scale Evaluation ◽  
The Web

Background Joint pain caused by osteoarthritis (OA) is highly prevalent and can be extremely debilitating. Programs to support self-management of joint pain can be effective; however, most programs are designed to build self-efficacy and rarely engage social networks. Digital interventions are considered acceptable by people with joint pain. However, many existing resources are not accessible for or developed alongside people with lower health literacy, which disproportionately affects people with OA. Objective This study aims to design and develop an accessible digital self-management tool for people with joint pain and integrate this with an existing social network activation tool (Generating Engagement in Network Involvement [GENIE]) and to explore the feasibility of these linked tools for supporting the management of joint pain. Methods The study was conducted in 2 phases: a design and development stage and a small-scale evaluation. The first phase followed the person-based approach to establish guiding principles for the development of a new site (Managing joint Pain On the Web and through Resources [EMPOWER]) and its integration with GENIE. People with joint pain were recruited from libraries, a community café, and an exercise scheme to take part in 3 focus groups. EMPOWER was tested and refined using think-aloud interviews (n=6). In the second phase, participants were recruited through the web via libraries to participate in a small-scale evaluation using the LifeGuide platform to record use over a 1-month period. Participants (n=6) were asked to complete evaluation questionnaires on their experiences. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework was used to explore the feasibility of the sites. Results The focus groups established guiding principles for the development of the tool. These included ensuring accessibility and relevance for people with OA-related joint pain and recognizing that joint pain is the reason for seeking support, trust, social facilitation, and goal setting. Think-aloud interviews identified issues with user experience and site navigation and the need for professional input for referral and goal setting, confusion, and tensions over the role of GENIE and site connectivity. Participants expected the sites to be specific to their pain-related needs. EMPOWER was accessed 18 times; 6 users registered with the site during the evaluation study. Participants mostly explored information pages on being active and being a healthy weight. Only one participant undertook goal setting and 4 participants visited the GENIE website. Conclusions Using the NASSS framework, we identified the complexity associated with integrating EMPOWER and GENIE. The value proposition domain highlighted the technical and conceptual complexity associated with integrating approaches. Although identified as theoretically achievable, the integration of differing propositions may have caused cognitive and practical burdens for users. Nevertheless, we believe that both approaches have a distinct role in the self-management of joint pain.

scholarly journals Integrating a Web-Based Self-Management Tool (Managing Joint Pain on the Web and Through Resources) for People With Osteoarthritis-Related Joint Pain With a Web-Based Social Network Support Tool (Generating Engagement in Network Involvement): Design, Development, and Early Evaluation (Preprint)

2020 ◽  
Author(s):  
Paul Clarkson ◽  
Ivaylo Vassilev ◽  
Anne Rogers ◽  
Charlotte Brooks ◽  
Nicky Wilson ◽  
...  
Keyword(s):  
Social Network ◽  
Focus Groups ◽  
Goal Setting ◽  
Joint Pain ◽  
Management Tool ◽  
Self Management ◽  
Small Scale ◽  
Web Based ◽  
Scale Evaluation ◽  
The Web

BACKGROUND Joint pain caused by osteoarthritis (OA) is highly prevalent and can be extremely debilitating. Programs to support self-management of joint pain can be effective; however, most programs are designed to build self-efficacy and rarely engage social networks. Digital interventions are considered acceptable by people with joint pain. However, many existing resources are not accessible for or developed alongside people with lower health literacy, which disproportionately affects people with OA. OBJECTIVE This study aims to design and develop an accessible digital self-management tool for people with joint pain and integrate this with an existing social network activation tool (Generating Engagement in Network Involvement [GENIE]) and to explore the feasibility of these linked tools for supporting the management of joint pain. METHODS The study was conducted in 2 phases: a design and development stage and a small-scale evaluation. The first phase followed the person-based approach to establish guiding principles for the development of a new site (Managing joint Pain On the Web and through Resources [EMPOWER]) and its integration with GENIE. People with joint pain were recruited from libraries, a community café, and an exercise scheme to take part in 3 focus groups. EMPOWER was tested and refined using think-aloud interviews (n=6). In the second phase, participants were recruited through the web via libraries to participate in a small-scale evaluation using the LifeGuide platform to record use over a 1-month period. Participants (n=6) were asked to complete evaluation questionnaires on their experiences. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework was used to explore the feasibility of the sites. RESULTS The focus groups established guiding principles for the development of the tool. These included ensuring accessibility and relevance for people with OA-related joint pain and recognizing that joint pain is the reason for seeking support, trust, social facilitation, and goal setting. Think-aloud interviews identified issues with user experience and site navigation and the need for professional input for referral and goal setting, confusion, and tensions over the role of GENIE and site connectivity. Participants expected the sites to be specific to their pain-related needs. EMPOWER was accessed 18 times; 6 users registered with the site during the evaluation study. Participants mostly explored information pages on being active and being a healthy weight. Only one participant undertook goal setting and 4 participants visited the GENIE website. CONCLUSIONS Using the NASSS framework, we identified the complexity associated with integrating EMPOWER and GENIE. The value proposition domain highlighted the technical and conceptual complexity associated with integrating approaches. Although identified as theoretically achievable, the integration of differing propositions may have caused cognitive and practical burdens for users. Nevertheless, we believe that both approaches have a distinct role in the self-management of joint pain. CLINICALTRIAL

WED 066 Web-based media as a self-management tool for people with epilepsy

2018 ◽  
Vol 89 (10) ◽  
pp. A8.1-A8
Author(s):  
McKinlay Alison ◽  
Ridsdale Leone
Keyword(s):  
Social Networking Sites ◽  
Service Providers ◽  
Management Tool ◽  
Self Management ◽  
Online Information ◽  
Web Based ◽  
Related Information ◽  
Health Service Providers ◽  
Potential Benefits ◽  
Age Range

BackgroundThere is little evidence on how people with epilepsy (PWE) use web-based media in self-management of their condition. This study focused on the benefits/risks for PWE using social networking sites and web-based media.MethodsWe recruited 14 PWE who had volunteered after seeing information provided by Epilepsy Action, UK. We asked open-ended questions about online media use. Interviews lasted 60–90 min. Sessions were recorded, transcribed, and thematically analysed using Nvivo.ResultsSeven men and seven women participated, age range: 33–73, average diagnosis length was 25 years. Twelve participants used web-based media to gather information about their epilepsy. Seven used apps to manage their epilepsy by logging seizures or medication reminders. Six participants were hesitant to use web-based media due to privacy concerns. Four participants felt that epilepsy was underrepresented or misrepresented online. Three participants preferred traditional sources of epilepsy-related information.DiscussionResults show the value of web-based media in providing information and support to PWE, with the caveat that concerns around privacy and disclosure can undermine potential benefits. Health service providers and advocacy groups can assist by ensuring online information is accurate and up-to-date. Further research may help in developing understanding and future services.

Developing an eHealth intervention for cancer symptom management for rural residents.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 207-207 ◽  
Author(s):  
Stephanie Gilbertson-White ◽  
Chi Yeung ◽  
Keri Nace Mercer ◽  
Dorota Bartoczszyk ◽  
Todd Papke
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Symptom Management ◽  
Self Management ◽  
Rural Residents ◽  
Cancer Symptoms ◽  
Cancer Symptom Management ◽  
Web App ◽  
The Web

207 Background: A disproportionate number of late-stage cancer diagnoses occur in rural residents. Paradoxically this population, with an increased need for palliative care, has minimal access to these services. As smartphone and high-speed internet connectivity reaches near universal penetrance across the country, eHealth technologies have the potential to address this palliative care access gap. Oncology Associated Symptoms and Individualized Strategies (OASIS) web-app was developed to provide tailored cancer symptom self-management support and address this gap. Methods: A two-phased, mixed-methods design was used to: (1) assess stakeholder needs and opinions on the role of eHealth technologies to manage cancer symptoms; and (2) beta test a symptom self-management web-app. Adult patients with advanced cancer and clinic staff from two rural cancer clinics were recruited. A descriptive qualitative approach was used to analyze the patient interviews and staff focus groups. Themes related to symptom management needs and the role of technology were identified. OASIS was developed to address the themes found in phase 1. OASIS consists of 57 self-management strategies for 15 cancer symptoms and a visual symptom/strategy tracker for patients to monitor their symptoms and improve their self-management skills. Results: n = 15 patients were interviewed and n = 11 staff participated in focus groups. Themes identified were “fatalistic acceptance”, “teaching self how to manage symptoms”, and “balancing information needs”. To address these themes OASIS was developed and beta-tested with n = 10 rural residents with advanced cancer. 100% of participants were able to access OASIS via their home internet connection, 80% understood how to use the web-app after one 15 min teaching session, and 50% requested access to the web-app for family to help them with their symptoms. Conclusions: Patients and staff in rural communities have significant cancer symptom management needs and are interested in using eHealth technologies to address these needs. OASIS was found to be accessible, user friendly, easily navigated, and visually appealing. Future research is needed to evaluate the feasibility and acceptability as well as the efficacy of OASIS.

Defining user needs for an electronic tool to improve chemotherapy-related toxicity management.

2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 157-157 ◽  
Author(s):  
Rebecca M. Prince ◽  
Laura Parente ◽  
Anthony Soung Yee ◽  
Melanie Powis ◽  
Katherine Enright ◽  
...  
Keyword(s):  
Focus Groups ◽  
Field Study ◽  
Current System ◽  
Primary Care Providers ◽  
Management Tool ◽  
Self Management ◽  
User Needs ◽  
Care Providers ◽  
Electronic Tool ◽  
Management Advice

157 Background: Cancer drugs are associated with toxicities which can negatively impact patients’ (pts) quality of life, outcomes and increase acute care use (ACU). There is increasing interest in leveraging technology to solve clinical problems in healthcare. We hypothesized that an electronic tool (toxicity module) targeting management of chemotherapy toxicities could decrease ACU by facilitating more effective symptom management. Methods: Participatory design methodology consisting of end user needs assessment through ethnographic field study (shadowing and in-depth interviews) and focus groups was used to inform design of an interactive prototype toxicity module. Oncology pts and their caregivers, and health care providers (HCPs) including oncologists, oncology nurses and primary care providers were included in all stages of development. Contemporaneous notes were taken during ethnography while focus groups were also audio recorded. Thematic analysis through ideation sessions and time-of-day exercises allowed identification of overarching issues. Results: Eight pts and 8 HCPs participated in the ethnographic field study. Two focus groups, one with 7 pts, one with 4 HCPs were held. Most themes were common to both pts and HCPs; gaps and barriers in the current system, need for decision aids, improved HCP communication and options in care delivery, and access to credible information delivered in a timely, secure manner and integrated into existing systems. Additionally, pts further identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious and wanting to be more empowered; HCPs identified accountability as an issue. These themes informed development of a prototype for a web-based toxicity management tool, which has served the purpose of defining user needs for symptom tracking, self-management advice, and timely communication with an oncology provider. Iterative evaluation over 2 rounds of usability testing is currently underway. Conclusions: An electronic tool that integrates just-in-time self-management advice and oncology provider support into routine care may address some of the gaps identified in the current system for managing chemotherapy toxicity.

Evaluation of the functional goal‐setting and self‐management tool for osteoarthritis, a patient‐centred tool to improve osteoarthritis care

2021 ◽  
Author(s):  
Nila A. Sathe ◽  
Cate Polacek ◽  
Roni Christopher ◽  
Julie K. Simonson ◽  
Margarita Udall ◽  
...  
Keyword(s):  
Goal Setting ◽  
Management Tool ◽  
Self Management

scholarly journals Developing a Shared Patient-Centered, Web-Based Medication Platform for Type 2 Diabetes Patients and Their Health Care Providers: Qualitative Study on User Requirements (Preprint)

2017 ◽  
Author(s):  
Gerda Bernhard ◽  
Cornelia Mahler ◽  
Hanna Marita Seidling ◽  
Marion Stützle ◽  
Dominik Ose ◽  
...  
Keyword(s):  
Type 2 Diabetes ◽  
Health Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Self Management ◽  
Care Providers ◽  
Patient Centered ◽  
Web Based ◽  
Access Methods

BACKGROUND Information technology tools such as shared patient-centered, Web-based medication platforms hold promise to support safe medication use by strengthening patient participation, enhancing patients’ knowledge, helping patients to improve self-management of their medications, and improving communication on medications among patients and health care professionals (HCPs). However, the uptake of such platforms remains a challenge also due to inadequate user involvement in the development process. Employing a user-centered design (UCD) approach is therefore critical to ensure that user’ adoption is optimal. OBJECTIVE The purpose of this study was to identify what patients with type 2 diabetes mellitus (T2DM) and their HCPs regard necessary requirements in terms of functionalities and usability of a shared patient-centered, Web-based medication platform for patients with T2DM. METHODS This qualitative study included focus groups with purposeful samples of patients with T2DM (n=25), general practitioners (n=13), and health care assistants (n=10) recruited from regional health care settings in southwestern Germany. In total, 8 semistructured focus groups were conducted. Sessions were audio- and video-recorded, transcribed verbatim, and subjected to a computer-aided qualitative content analysis. RESULTS Appropriate security and access methods, supported data entry, printing, and sending information electronically, and tracking medication history were perceived as the essential functionalities. Although patients wanted automatic interaction checks and safety alerts, HCPs on the contrary were concerned that unspecific alerts confuse patients and lead to nonadherence. Furthermore, HCPs were opposed to patients’ ability to withhold or restrict access to information in the platform. To optimize usability, there was consensus among participants to display information in a structured, chronological format, to provide information in lay language, to use visual aids and customize information content, and align the platform to users’ workflow. CONCLUSIONS By employing a UCD, this study provides insight into the desired functionalities and usability of patients and HCPs regarding a shared patient-centered, Web-based medication platform, thus increasing the likelihood to achieve a functional and useful system. Substantial and ongoing engagement by all intended user groups is necessary to reconcile differences in requirements of patients and HCPs, especially regarding medication safety alerts and access control. Moreover, effective training of patients and HCPs on medication self-management (support) and optimal use of the tool will be a prerequisite to unfold the platform’s full potential.

scholarly journals Web-based self-management support prototype My Kidneys My Health for adults with chronic kidney disease: Co-design and usability testing (Preprint)

2020 ◽  
Author(s):  
Maoliosa Donald ◽  
Heather Beanlands ◽  
Sharon Straus ◽  
Michelle Smekal ◽  
Sarah Gil ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Focus Groups ◽  
Usability Testing ◽  
Video Production ◽  
Self Management ◽  
Management Support ◽  
Web Based ◽  
Support Tool ◽  
Patient Reported

BACKGROUND Supporting patients to self-manage their chronic kidney disease (CKD) has been identified as a research priority by patients with CKD and those that care for them. Self-management has been shown to slow CKD progression and improve the quality of life for individuals living with the disease. Previous work has identified a need for a person-centered, theory-informed web-based tool for CKD self-management that can be individualized to a patient’s unique situation, priorities, and preferences. We addressed this gap using an Integrated Knowledge Translation method and patient engagement principles. OBJECTIVE The aim of this study was to implement the systematic co-design and usability testing of a web-based self-management prototype for adults with CKD (non-dialysis, non-transplant) and their caregivers to enhance self-management support. METHODS A multi-step, iterative system development cycle was used to co-design and test My Kidneys My Health prototype. The 3-step process included: (1) creating website features and content using two sequential focus groups with patients with CKD and caregivers; (2) heuristic testing using Nielsen’s 10 heuristic principles; (3) usability testing through in-person 60-minute interviews with patients with CKD and a caregiver. Patients with CKD, caregivers, clinicians, researchers, software developers, graphic designers, and policy makers were involved in all steps of this study. RESULTS In step 1, 18 participants (14 patients and 4 caregivers) attended one of the two sequential focus groups. The participants provided specific suggestions for simplifying navigation, as well as suggestions to incorporate video, text, audio, interactive components, and visuals to convey information. Five reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Five participants completed usability testing (step 3) and provided feedback on video production, navigation, features and functionality, and branding. Participants reported visiting the website repeatedly for the following features: personalized food tool, my health care provider question list, symptom guidance based on CKD severity, and medication advice. Usability was high, with a mean System Usability Score of 90 out of 100. CONCLUSIONS My Kidneys My Health prototype is a systematically developed, multi-faceted CKD self-management web-based support tool guided by theory and preferences of patients with CKD and their caregivers. The website is user-friendly and provides features that improve the user experience by tailoring the content and resources to their needs. A feasibility study will provide insight into the acceptability of and engagement with the prototype, and identify preliminary patient reported outcomes (e.g., self-efficacy), as well as potential factors related to implementation. This work is relevant given the shift to virtual care during a pandemic era, providing patients with support when in-person care is restricted. CLINICALTRIAL

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