Co-designing a digital educational resource to enhance medication adherence in Parkinson’s: applying behaviour change theory to support self-efficacy and empowerment - Oral presentation delivered at ICIC26
Year: 2026
Type: conference-paper
Study design: Observational Study
Abstract: Background Timely administration of Parkinson’s medication is key to preventing symptom progression and worsening. However, many people with Parkinson’s experience challenges adhering to complex regimens, increasing the risk of symptom exacerbation, avoidable hospital admissions, and reduced quality of life. Preventive, value-based strategies that support medication adherence are therefore essential; however, existing educational interventions are limited in scope. Few address carer needs, none are co-designed with patients or are grounded in behaviour change theory, and there remains a distinct lack of digital resources, restricting their potential to deliver sustainable, preventive impact. Aim To co-design the content for a digital educational resource that supports people with Parkinson’s and their carers in managing medication adherence, using the COM-B model for behaviour change. Methods A mixed-methods design was used to understand medication adherence in Parkinson’s. A scoping review was conducted, followed by a cross-sectional online survey (n=509) assessing factors influencing adherence using the Medication Adherence Report Scale (MARS-10) and self-efficacy using PROMIS® Self-Efficacy for Managing Medications and Treatment. Individual interviews with people with Parkinson’s (n=12) and caregivers (n=8) explored experiences and challenges in greater depth. Qualitative data was analysed using the COM-B model to identify behavioural determinants influencing adherence providing the foundation for subsequent co-design of an evidence-based digital educational resource. Results 95% of survey participants (n=485) reported difficulty with medication adherence to some degree with 15% (n=78) experiencing significant challenges. Self-efficacy was the strongest predictor of medication adherence (p < .001). Levels of daily support required also influenced adherence. Medication-taking behaviours and attitudes were influenced by fluctuations in functional ability, cognitive and psychological changes, perceived impact of medication, and the desire to preserve independence and quality of life. Medication self-efficacy was found to be a dynamic, co-constructed process shaped by adaptation, trust, and support networks. COM-B domains of reflective motivation and psychological capability were core drivers of medication-taking behaviour with physical opportunity representing the main potential facilitator. People with Parkinson’s and their carers expressed a need for an integrated package of personalised, practical, and professional support to build confidence in medication adherence. Conclusion Medication adherence in Parkinson’s is shaped by fluctuating abilities, psychological factors, and available support, influenced by interactions between self-efficacy, capability, opportunity, and motivation. Findings highlight the need for preventive, technology-enabled approaches that sustain adherence and reduce avoidable deterioration. By integrating evidence from multiple methods and stakeholder perspectives, this study establishes a foundation for a co-designed, theoretically informed, evidence-based digital educational resource that promotes proactive self-management, supports carers, and contributes to value-based, preventive care for people with Parkinson’s. Implications for Integrated Care Integrating behaviour change theory into co-designed digital education could equip people with Parkinson’s to sustain medication adherence and effective self-management. Through timely digital support, this intervention will aim to enhance communication between patients, carers, and healthcare providers while preventing avoidable medication errors and the associated costly reactive care. Embedding this resource within care pathways could promote proactive, coordinated care and support a value-based model focused on prevention, empowerment, and sustainable improvements in quality of life.
Language: English
Subfield: Family Practice
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W7160740978
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