Objective: 1) Evaluate acceptability and feasibility of the intervention

2) Understand barriers and enablers to engagement and intervention improvement recommendations

Background: We co-designed the ‘Live Well with Parkinson’s’ intervention for people with PD and their caregivers to access personalised symptom management support to improve quality of life. Participants (n=346) were recruited to the trial and randomised to treatment as usual or the intervention, which consisted of an online or paper resource alongside up to six remote sessions with a trained ‘Live Well’ supporter.

Method: Mixed methods using interviews and surveys to evaluate acceptability and feasibility of online and paper versions of the intervention. A questionnaire completed by 134 intervention participants assessed acceptability, utilisation, and barriers and facilitators to implementation and improvement recommendations. Semi-structured interviews were run with a purposive sample of intervention participants (n=32), caregivers (n=6) and trained supporters (n=3). Interviews explored intervention context, mechanisms, and implementation. Interview participants were selected for maximum diversity across disease severity, caregiver involvement, receipt of paper or online toolkit, intervention use and socio-demographic characteristics (age, gender, education, and ethnic group). Questionnaire data were descriptively analysed. Interview data were analysed with codebook thematic analysis.

Results: Of the 134 survey participants, 62 (46.3%) were female, they had a mean age of 68.6 (8.85) years, and a median index of multiple deprivation of 6 (4-8). The intervention was beneficial for many participants. Some felt access to the toolkit earlier on in their diagnosis would have been useful. Engagement was higher amongst those with a caregiver. Supporter sessions were seen as vital to independent toolkit use. Engagement barriers included digital literacy, low motivation, forgetfulness, PD symptoms impacting computer use ability, and language. Suggestions for improvement were options to have in-person supporter sessions, toolkit voice control functionality, and delivering the intervention via an app.

Conclusion: A digital self-management toolkit was acceptable and feasible. The feedback will help to implement the toolkit, if effective, into clinical practice and inform future intervention development for PwP.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/experiences-of-a-personalised-intervention-to-support-self-management-in-pwp-pd-care-live-well-with-parkinsons/