How do lay people experience their involvement in research?

Problem

Caring is an increasingly vital role in society. There are approx. 6.8m informal carers in the UK, providing care worth £130bn. Carers face numerous challenges including responding to changing complex physical, social and psychological needs of the cared for person; finding and verifying relevant information and support; loneliness and isolation; and managing their own health and social needs. Carers need access to support 24/7 and lack of support for carers contributes to unplanned hospital admissions, prolonged hospital stays and delays in discharging patients.Interventions need to meet the users needs in an efficient and effective manner. Patient and public involvement in the development of both interventions and academic research is now considered essential to ensure that work remains relevant and acceptable to the intended beneficiaries. Understanding how non-academic, non-clinical partners experience this process is, however, relatively unexplored territory.

Approach

Care Companion is novel and simple to use online support platform for carers, which aims to strengthen carer resilience and sustain caring by providing personalised online support. It has been co-produced by a panel of carers, university academics, representatives from local health & social care providers, third sector organisations and a digital media company. The Carers Panel is made up of people with first-hand experience of providing informal care for a loved one and a wide range of IT competency. They have been at the heart of the development process, ensuring that Care Companion meets the needs of informal carers and contains the features that they find relevant.Members of the Carers Panel, content developments and a representative of the digital media company took part in semi-structured interviews exploring their experience of working together to develop Care Companion.

Findings

Interviews have been completed and transcribed. Thematic analysis is currently underway.

Consequences

A greater understanding of how non-academic, non-clinical partners experience their involvement in research will enable us, as a research community, to better support them during this process and to maximise the benefits of this engagement.