The Cerebral Palsy Link Worker (CP LINK) study: Protocol for a feasibility study with integrated process evaluation

Abstract

Background: Cerebral palsy (CP) is the most common lifelong physical disability in the UK and is linked to multiple social, psychological and health inequalities which are often amplified as this group ages. Most middle-aged and older people with CP are supported in their community by General Practitioners (GPs) and complain of disjointed and non-specialised care from people who have a poor understanding of their complex ageing needs. This points to the need for specialised holistic care for this group. Therefore, there is a pressing need to develop ways to support people ageing with CP within their communities.

Project aim: To evaluate a co-developed specialised CP link worker role to support adults aged 40 and older ageing with CP in North Central London over 1 year.

Methods: We will undertake an evaluation of the link worker role by gathering data at baseline, 1-week and 3-months from participants who use the service. Feasibility outcomes will include recruitment and retention rates, acceptability of the intervention, completeness and quality of outcome data, and the practicality of collecting and analysing participant-reported outcome measures. Process evaluation outcomes will include insights into how the intervention was delivered and received, fidelity to the intervention model, contextual factors that influenced implementation, potential sustainability, and stakeholder experiences. This project has been co-developed with the charity UP – The Adult Cerebral Palsy Movement, and we will work alongside a lived experience advisory group and stakeholder advisory group throughout the project.