Cultivating participatory processes in self-harm app development: A case-study and working methodology

Abstract

Background: Self-harm and suicide related behaviours are increasing in young people, and clinical support is not adequately meeting needs. Improved approaches to assessment and the clinical management of self-harm will result from codesign processes and include greater shared decision-making between young people and practitioners. The CaTS-App (an adapted digital version of the existing Card-Sort Task for Self-harm research tool) aims to facilitate a collaborative understanding of adolescent self-harm and support decision-making within clinical settings. The codevelopment of a digital, clinical tool which meets the needs of multiple stakeholders requires careful consideration.

Methods: We present a case-study describing the participatory aspects of the development of the CaTS-App, which included comprehensive patient involvement, research activities and coproduction with diverse young people aged 17-24 with lived experience of self-harm. We share our processes and activities to deliver safe, engaging, sustainable, ethical and responsible participatory practice and co-created knowledge, in the codevelopment of the CaTS-App.

Results: Activities spanned a 48-month period in both face-to-face and online settings. Example processes and activities are provided in narrative, tabular and diagrammatic form, alongside discussion of the rationale for choices made. A summary methodology is also shared to stimulate continued discussion and development of participatory approaches in digital mental health.

Conclusions: The paper contributes important insight and practical detail for the delivery of genuine participatory processes in digital mental health development when working with a population who may be considered vulnerable.

Keywords: PPI; card‐sort task for self‐harm; coproduction; digital interventions; self‐harm; young people.

FIGURE 1

This figure provides an overview of the CaTS‐App Work Package (WP8), within the structure of Digital Youth. Young people in the CaTS‐App PPI group are also members of the Sprouting Minds YPAG, offering young people the possibility of being involved across the Programme's Work Packages enabling young people to get involved in research in a flexible manner at different levels of involvement, whilst creating sustained involvement and training by Sprouting Minds. The image also provides an overview of the different phases of the CaTS‐App and the stages within these phases, plus how and when external stakeholders were involved.

FIGURE 2

This figure shows the researcher's process of involvement for PPI members. The process highlights the activities that occur before, within and after PPI sessions (see Table 1 for a description of the activities) and how these processes relate to the key objective they support (see Table 4). The process of involvement flows from left to right, some including cyclical activities that repeat.

FIGURE 3

This figure shows the wellness plan. This is a document highlighting a care plan for a PPI member, including emergency contact details, self‐care strategies, sources of support and methods for taking a break from the project or a session.

FIGURE 4

This figure shows the researcher's process of involvement for coproduction. The process highlights the activities included when young people are involved in the coproduction workshops (see Table 1 for a description of the activities). The process flows from top‐left to bottom‐right, with the coproduction workshops repeating activities within each session. Each activity is highlighted in the colour of the key objective it supports, see Table 4.

FIGURE 5

This figures includes the project flow chart. The steps of involvement for the Coproduction Group are depicted as images with a sentence explaining the process.

FIGURE 6

This figure contains the ways of working for the Coproduction Group. This was designed with PPI, and asks young people in the Coproduction Group to agree to working safely and collaboratively together.

FIGURE 7

This figure is of the confirmation notice, which is given to young people taking part in the coproduction workshops to explain how to access the event, what to expect from it and wellness prompts including signposting and wellness plan reminders.

FIGURE 8

This figure gives example of some of the Miro board features. Miro, a virtual collaborative workboard, was used for all of the coproduction workshops as a way to complete activities.

FIGURE 9

This figure includes the working methodology for the CaTS‐App development. The working methodology embeds principles relevant to user experience from PPI, HCI and RRI across all participatory stages of the codevelopment of the CaTS‐App Planning phase/Discover phase and discover phase is to build foundational understanding (via PPI and wide stakeholder research with end‐users, and coproduction workshops with young people with lived experience). Design and development phase will use co‐creation processes to produce a prototype through stakeholder workshops. Feasibility of prototype evaluated by young people and practitioner dyads to understand what worked well and what changes would be desired. This would lead to a formal feasibility evaluation study/trial to assess effectiveness.