Exploring access to community neurorehabilitation for people with progressive neurological conditions: a qualitative study.

ABSTRACT

PURPOSE: Community neurorehabilitation enables people with progressive neurological conditions (PNCs) to manage their symptoms to live an active, fulfilling life; however, it is not accessible to all. This study explored the factors influencing access to community neurorehabilitation in Northern Ireland from the perspective of people with PNCs and their carers. METHODS: Eleven people living with a PNC and three carers took part in virtual focus groups. Data was thematically analysed using the framework method. RESULTS: Access to neurorehabilitation was described as a staged journey, driven by people with PNCs, and impacted by interactions with others. Four themes were identified the person in the driving seat, describing the value of person-centred care and the need for proactivity; the traffic lights, depicting the role and influence of health care professionals (HCPs); the need for direction; and roadworks and roadblocks, identifying additional barriers to access. In addition, six fundamentals of good access were identified. CONCLUSIONS: This study adds depth to our understanding of the complexity, and the roles and needs of people with PNCs and HCPs, in accessing community neurorehabilitation. Further research is needed to determine how best to empower people to access rehabilitation.

Access to community neurorehabilitation is dependent on personal factors including patient activation level and health care professional knowledge.People need to be empowered to access rehabilitation services.A single point of contact for advice and triaging concerns related to progressive neurological conditions is desirable.There is a need to understand the experiences and needs of people with low levels of patient activation to ensure equitable access to community-based neurorehabilitation.