Participatory design

Background: Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations.

Aims To explore the perspectives of those involved in co‐designing a mobile application with people with dementia and their carers. Background People with dementia suffer physical and psychological problems as their illness progresses and require a range of health and social care services to meet their needs. Mobile applications are being developed to support individuals to manage long‐term conditions, but patients and carers are not always involved in designing this technology, which can lead to poor quality health apps.

Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate.

This paper reports on the research methods used in five different projects aimed at supporting people living with dementia in their everyday lives and activities of daily living. In all five projects, people living with dementia and their informal carers were involved. Applied methods ranged from passive involvement in the form of observations to very active involvement consisting of consultation rounds and think-aloud sessions.