Koneksi: Online community assistance ecosystem for stroke survivors

Designing a Framework for an Online Community Assistance Ecosystem to Aid Disabled Stroke Survivors and Caregivers in Indonesia

Stroke is a significant cause of disability in Indonesia, with the highest disability-adjusted life years in Southeast Asia. Approximately 98% of stroke survivors experience post-stroke disabilities such as limited mobility, cognitive impairments, and behavioural issues. Despite coverage from Indonesian Health Insurance (BPJS), only 39.4% of survivors regularly attend medical appointments, highlighting a gap in ongoing health and psychosocial support.

Project Overview

The project aims to create an online Community Assistance Ecosystem Framework (CAEF) to support disabled stroke survivors and their caregivers. This ecosystem will connect healthcare providers, students, government and non-government organizations, making it scalable and replicable for other settings.

Methodology

The project employs a participatory approach with three main components:

Co-Design Workshops: Engaging survivors, caregivers, and stakeholders to identify needs and develop CAEF concepts.
‘Go-Along’ Interviews: Conducted with survivor-caregiver pairs to gain detailed insights.
WhatsApp Reflections: Capturing real-time support needs through messaging.
Research Sites

The project will focus on North Sulawesi and Gorontalo, regions with high stroke prevalence and limited access to diagnostic technologies.

Outputs

The project will produce a digital CAEF with design principles for use by regulators and technology developers. Collaborations will identify practical applications and create policy briefs and media communications to promote the framework.

Resources and Budget

The 24-month project includes iterative co-design workshops supported by significant in-kind contributions from partner organizations. Researchers from Unsrat and UI, alongside RAs, will ensure successful data collection and fieldwork completion. Participants will be compensated for their time and travel expenses.

Feasibility Statement

The project's feasibility is supported by strong partner commitments, scoping research demonstrating proof-of-concept, and an experienced research team with established connections to policymakers.

Partnership

Monash University, along with Unsrat, UI, and other partners, bring expertise in healthcare, electronic health systems, and disability advocacy, ensuring an effective co-design approach and impactful project outcomes.

Impact Strategy

The project aims to achieve community, system improvement, and policy impacts by engaging lived experiences, developing context-responsive design principles, and disseminating findings through various media and workshops.

Stakeholder Engagement

Engagement with stroke survivors, caregivers, healthcare providers, and policymakers is central to achieving maximum impact. Workshops and consultations will ensure the framework addresses real needs and is scalable.

Implementation Capacity

Monash University will manage the project, with partners leading workshops, framework design, and practical applications. Public relations teams will collaborate on media dissemination.

GEDSI Responsiveness

The project focuses on disability inclusion, gender sensitivity, and social inclusion. Engaging stroke survivors and caregivers ensures the CAEF addresses accessibility and equity issues, with a team dedicated to promoting inclusive research practices.

Outcomes

The project aims to provide a tool for disabled stroke survivors and caregivers to access health and psychosocial support, enhancing their agency and control. Outputs will include accessible public communications, practical applications, and policy advocacy.

Funder

This project is  funded by Koneksi, Department of  Foreign Affairs and Trade.