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COMMUNITY-based participatory research

Community-based participatory approaches to neurogenetic syndrome research

Individuals with neurogenetic syndromes comprise a large subset of the population of people with intellectual disability. Members of neurogenetic syndrome communities, including self-advocates, caregivers, family members, and service providers, can be valuable partners in translational research and its application to intervention and advocacy.

Tue, 01/10/2023 - 16:16

Co-Design to Support the Development of Inclusive eHealth Tools for Caregivers of Functionally Dependent Older Persons: Social Justice Design

Background: eHealth can help reduce social health inequalities (SHIs) as much as it can exacerbate them. Taking a co-design approach to the development of eHealth tools has the potential to ensure that these tools are inclusive. Although the importance of involving future users in the development of eHealth tools to reduce SHIs is highlighted in the scientific literature, the challenges associated with their participation question the benefits of this involvement as co-designers in a real-world context.

Thu, 03/11/2021 - 18:33

The importance of power, context and agency in improving patient experience through a patient and family centred care approach

Background: Research shows that the way that healthcare staff experience their job impacts on their individual performance, patient experience and outcomes as well as on the performance of organisations. This article builds on this literature by investigating, with multi-disciplinary clinical teams as well as patients and relatives, what factors help or hinder changes designed to improve patient experience.

Mon, 02/17/2020 - 11:59