Abstract
Background: The wide variety and high specialisation of services for people with Parkinson's disease (PD) and their family carers make the navigation of health and social care professionals, levels of care and community organisations difficult. This promotes fragmentation of care, poor personalised care for their needs throughout the PD journey, limiting responsive support when they need it. Through this oral presentation we aim to propose and discuss a new user driven care pathway (Connecting-Park) that will: 1. improve access to community resources and professional services for people with PD and their family carers; 2. introduce a personalised and multisectoral model for the management of PD in the community; and 3. sustain an integrated and inclusive approach to health and social care for people with PD and family carers.
Approach: A cross-national research project (OPTIM-PARK) took place in Denmark, Norway, Spain and the UK, and was completed in 2023. A sequential and concurrent mixed method design was applied and involved the following: a comprehensive literature review and document analysis; 166 interviews with stakeholders, family carers, professionals and people with PD; and a feasibility trial of the intervention (152 people with PD and 111 family carers). After the analysis and integration of the results, a care pathway for integrated care (Connecting Park) was designed and evaluated with two groups of 8 experts. Throughout the duration of the project cross-national Patient and Public involvement took place with 32 public contributors and involved an educational programme and evaluation, which focused on definition of roles and expectations, practical agreements and learning outcomes.
Results: Connecting-Park is a user driven cross-national multisectoral care pathway based on cross-national evidence and applicable to people with PD and family carers with 6 steps: User Driven Eligibility, Personalised Assessment, Resource Selection, Integrated Use of Resources, Prevention of complications, Follow-up. Contributions from all agencies and processes involved in its design reinforced its key features: inclusivity of vulnerable populations, person-centred approach, support of family carers, opportunities for adoption in primary and secondary care. Reflections on benefits and future implementation referred to the benefits of the care pathway for family caregivers, the need for a specialised workforce in integrated care and PD, the mobilisation of existing initiatives in the community to optimise systems of support, and the importance of maintaining community resources directories updated.
Implications: The Connecting-Park pathway could help policymakers, researchers and stakeholders develop multi-sectoral partnerships and adopting new coordination roles to achieve effective, personalised and integrated approach to PD in the community. Further research is needed to explore how this pathway can be implemented in specific contexts and organisations for people with PD and also, in other long-term conditions.