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A Multicomponent eHealth Intervention for Family Carers for People Affected by Psychosis: A Coproduced Design and Build Study

Sin, PHJ; Henderson, C; Woodham, LA; Sesé Hernández, A; Gillard, S (2019) A Multicomponent eHealth Intervention for Family Carers for People Affected by Psychosis: A Coproduced Design and Build Study. JOURNAL OF MEDICAL INTERNET RESEARCH, 21 (8). e14374. ISSN 1438-8871 https://doi.org/10.2196/14374
SGUL Authors: Sin, Pui Han Jacqueline

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Abstract

Background: Psychosis, including schizophrenia, is the most common severe mental illness affecting 1% of the population worldwide. A large number of people provide long-term support and care for a relative with psychosis. Although psychoeducational interventions, especially those delivered through a face-to-face group format, have an established evidence base for improving the caregiving experience, well-being, and health outcomes, large-scale implementation and access remain limited. There is a demand for such provision to be made through the internet for greater flexibility and wider access. Objective: This study aimed to integrate participatory research methodologies by the public, patients, and carers into the eHealth (electronic health) intervention design and build process to improve the product’s usability and acceptability. Methods: We adapted a structured eHealth intervention build method to include participatory research activities involving key stakeholders and end users to co-design and coproduce our intervention. An expert advisory group (EAG) comprising public involvement members led the formative design and build work using an agile build process. Carers independent from the study were consulted on the evolving drafts of the intervention prototype through focus group meetings. These results were fed back into the intervention build work continuously to ensure end users’ input inform every stage of the process. Results: An EAG comprising individuals with lived experience of psychosis, carers, health care professionals, researchers, voluntary organization workers, and eLearning experts (n=14) was established. A total of 4 coproduction workshops were held over 1 year during which the alpha and beta prototypes were designed and built through the participatory research work. Alongside this, 2 rounds of focus group study with carers (n=24, in 4 groups) were conducted to seek consultation on end users’ views and ideas to optimize the intervention design and usability. Finally, the EAG carried out a Web-based walk-through exercise on the intervention prototype and further refined it to make it ready for an online usability test. The final product contains multiple sections providing information on psychosis and related caregiving topics and interactive discussion forums with experts and peers for psychosocial support. It provides psychoeducation and psychosocial support for carers through the internet, promoting flexible access and individualized choices of information and support. Conclusions: The participatory research work led to the coproduction of a eHealth intervention called COPe-support (Carers fOr People with Psychosis e-support). We believe the study methodology, results, and output have optimized the intervention design and usability, fitting the end users’ needs and usage pattern. COPe-support is currently being tested for its effectiveness in promoting carers’ health outcome through an online randomized controlled trial. Trial Registration: ISRCTN Registry ISRCTN89563420; http://www.isrctn.com/ISRCTN89563420

Item Type: Article
Additional Information: ©Jacqueline Sin, Claire Henderson, Luke A Woodham, Aurora Sesé Hernández, Steve Gillard. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 22.07.2019. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
Keywords: 08 Information And Computing Sciences, 11 Medical And Health Sciences, 17 Psychology And Cognitive Sciences, Medical Informatics
SGUL Research Institute / Research Centre: Academic Structure > Population Health Research Institute (INPH)
Journal or Publication Title: JOURNAL OF MEDICAL INTERNET RESEARCH
ISSN: 1438-8871
Dates:
DateEvent
6 August 2019Published
22 July 2019Published Online
28 June 2019Accepted
Publisher License: Creative Commons: Attribution 4.0
Projects:
Project IDFunderFunder ID
NIHR-PDF-08-035National Institute for Health Researchhttp://dx.doi.org/10.13039/501100000272
URI: https://openaccess.sgul.ac.uk/id/eprint/111089
Publisher's version: https://doi.org/10.2196/14374

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