Background: The recent Australian National Agenda for Eating Disorders highlights the role technology can play in improving accessibility and service development through web-based prevention, early access pathways, self-help, and recovery assistance. However, engagement with the eating disorders community to co-design, build, and evaluate these much-needed technology solutions through participatory design processes has been lacking and, until recently, underresourced.
Objective: This study aims to customize and configure a technology solution for a nontraditional (web-based, phone, email) mental health service that provides support for eating disorders and body image issues through the use of participatory design processes.
Methods: Participants were recruited chiefly through the Butterfly National Helpline 1800 ED HOPE (Butterfly's National Helpline), an Australian-wide helpline supporting anyone concerned by an eating disorder or body image issue. Participants included individuals with lived experience of eating disorders and body image issues, their supportive others (such as family, health professionals, support workers), and staff of the Butterfly Foundation. Participants took part in participatory design workshops, running up to four hours, which were held nationally in urban and regional locations. The workshop agenda followed an established process of discovery, evaluation, and prototyping. Workshop activities included open and prompted discussion, reviewing working prototypes, creating descriptive artifacts, and developing user journeys. Workshop artifacts were used in a knowledge translation process, which identified key learnings to inform user journeys, user personas, and the customization and configuration of the InnoWell Platform for Butterfly's National Helpline. Further, key themes were identified using thematic techniques and coded in NVivo 12 software.
Results: Six participatory design workshops were held, of which 45 participants took part. Participants highlighted that there is a critical need to address some of the barriers to care, particularly in regional and rural areas. The workshops highlighted seven overarching qualitative themes: identified barriers to care within the current system; need for people to be able to access the right care anywhere, anytime; recommendations for the technological solution (ie, InnoWell Platform features and functionality); need for communication, coordination, and integration of a technological solution embedded in Butterfly's National Helpline; need to consider engagement and tone within the technological solution; identified challenges and areas to consider when implementing a technological solution in the Helpline; and potential outcomes of the technological solution embedded in the Helpline relating to system and service reform. Ultimately, this technology solution should ensure that the right care is provided to individuals the first time.
Conclusions: Our findings highlight the value of actively engaging stakeholders in participatory design processes for the customization and configuration of new technologies. End users can highlight the critical areas of need, which can be used as a catalyst for reform through the implementation of these technologies in nontraditional services.
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http://dx.doi.org/10.2196/19532 | DOI Listing |
NPJ Prim Care Respir Med
January 2025
Centre for Tuberculosis Research, Departments of Clinical Sciences and International Public Health, Liverpool School of Tropical Medicine, Liverpool, UK.
Evidence relating to peer support and community-based psychological and social (psychosocial) interventions to reduce stigma and depression among people with tuberculosis (TB) and their households is limited. This study aimed to engage with multisectoral stakeholders in Indonesia to co-develop a peer-led, community-based psychosocial intervention that is replicable, acceptable, and sustainable. We used a participatory action design and engaged key national, multisectoral stakeholders to ensure that the intervention co-design was relevant and appropriate to the TB health system and the sociocultural context of Indonesia.
View Article and Find Full Text PDFJMIR Pediatr Parent
January 2025
Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
Background: With the increasing implementation of patient online record access (ORA), various approaches to access to minors' electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child's care and involve them in their care.
View Article and Find Full Text PDFTo (1) establish a women's knee health consumer advisory group (CAG) via an evidence-informed process and (2) identify the CAG's research priorities to inform future projects. Mixed-methods priority-setting study. The CAG was established, grounded in a participatory action research approach and using the Patient Engagement in Research Framework, to inform a 4-phase process: (1) understand, (2) plan, (3) undertake, and (4) evaluate.
View Article and Find Full Text PDFAJOG Glob Rep
February 2025
Division of Complex Family Planning, Department of Obstetrics Gynecology and Reproductive Sciences, University of California San Diego, La Jolla, CA (Meurice, Kully, Averbach and Mody).
Background: Telemedicine contraception services have increased since the COVID-19 pandemic. There may be unique equity implications and language barriers for patients who speak Spanish.
Objective: To identify the barriers and facilitators of telemedicine for contraception care among patients who speak Spanish using a community-based participatory research approach.
Ann Glob Health
January 2025
École de santé publique, Université de Montréal, Canada.
Newcomer populations in urban centers experienced an exacerbated effect of coronavirus disease 2019 (COVID‑19) due to their precarious living and working conditions. Addressing their needs requires holistic care provisioning, including psychosocial support, assistance to address food security, and educational and employment assistance. Intersectoral collaboration between the public and the community sector can reduce vulnerabilities experienced by these groups.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!