Barriers and facilitators to engagement with a digital self-management toolkit for people with Parkinson’s – Qualitative interviews from a process evaluation embedded within a randomised controlled trial (PD-Care: Live Well with Parkinson’s)
Problem
Parkinson’s is a progressive neurodegenerative disorder causing disabling and distressing motor and non-motor symptoms. Parkinson’s affects one in 50 people over 65 in the UK and is associated with complex health and social care needs and potentially preventable complications. Through co-design, we have developed a digital self-management toolkit for people with Parkinson’s and their carers to access personalised information, advice, and support on symptom management and action-planning to bridge gaps in existing NHS services to enable people to “Live Well with Parkinson’s”. We are exploring intervention engagement barriers and facilitators for people with Parkinson’s, embedded within the process evaluation of a randomised controlled trial.
Approach
We are conducting semi-structured interviews with 30-35 people with Parkinson’s, 5-10 carers, and three trained “Live Well” supporters who facilitated toolkit use. Purposive sampling was used to ensure maximum representation, including age, gender, ethnicity, cognitive function, and socioeconomic status. Interviews explored participant and carer barriers and facilitators to using the digital toolkit during and between sessions and once sessions ended.
The toolkit was developed using the COM-B model, which states that behaviour change requires capability, opportunity, and motivation. Data will be analysed in line with the COM-B model using codebook thematic analysis. Public contributors assisted with topic guide and coding framework development, data interpretation and theme generation.
Findings
Thirty-nine people have been interviewed: 31 people with Parkinson’s, five carers, three supporters. Interviews will be completed in February 2024. Ongoing analysis will finish in May 2024. Preliminary results show capability barriers linked to Parkinson’s motor symptoms, such as tremor, make operating the digital toolkit using a keyboard and mouse difficult. Suggestions for improvement include making the toolkit available as a phone app and using voice activation to complete toolkit sections. Having a trained supporter input information on behalf of the participant improved engagement during sessions, but maintaining engagement once the sessions ended was challenging. Opportunity barriers relate to a lack of services in local areas and limited support from Parkinson’s healthcare services. However, some such gaps were filled with information from the toolkit, through signposting. Finally, issues with motivation arose because participants felt healthcare professionals were not going to use the data to make decisions about their care. Many received the toolkit several years post-diagnosis and had collected information over the years, so felt the toolkit offered little novelty. Many reported that having the ‘Live Well’ supporter to talk to was encouraging.
Consequences
If the intervention is found to be effective, information about barriers and facilitators to engagement will feed into the implementation into clinical practice to ensure maximum user experience and outcome improvements. If not effective, this information will nonetheless be useful for designing future digital intervention for people with Parkinson’s.