A Mixed-methods Exploration of Third-sector Perspectives on the Unmet Needs of Adults With Long-term Neurological Conditions During the Covid-19 Pandemic
Ebere Ugwuodo1, Pauline Campbell1, Julie Cowie2, Lorna Paul3
1Department of Nursing and Community Health, 2Yunus Centre, 3Department of Allied Health Professions, Glasgow Caledonian University, Scotland, United Kingdom
Objective:
To apply the International Classification of Functioning, Disability and Health (ICF) framework to systematically explore the unmet needs of adults with long-term neurological conditions (LTNC) from third-sector (voluntary) organisation perspectives
Background:
Globally, up to one in three adults currently live with an LTNC. The Covid-19 pandemic significantly disrupted neurological services, limiting access to essential care and support. The third-sector organisations expanded their efforts to support adults living with LTNC during the pandemic, but their insights remain largely hidden.
Design/Methods:
A two-phase mixed methods study guided by the ICF. In phase 1, we conducted a scoping review of grey literature from third-sector reports, following Arksey and O’Malley’s framework, reported using PRISMA-ScR, and charted data against the ICF. In phase 2, we conducted semi-structured interviews with 13 staff from four UK organisations. We analysed data using the Framework method, combining deductive ICF-based and inductive coding. Findings were integrated using a convergent approach and joint display to identify complementarity, convergence, divergence, and silence.
Results:
98 reports from 41 third sector organisations met the selection criteria; 328 unmet needs were mapped across all the ICF domains of body functions, activities, and participation, and environmental factors, describing service disruption, social isolation, and technological barriers. Qualitative interviews complemented these findings, with three key themes emerging: interrupted health and rehabilitation, poor communication and isolation, and unmet emotional needs. Across both phases, multiple evidence gaps were identified, including unmet sexual and nutritional health needs, lack of evidence for people with less common neurological conditions, limited carer perspectives and inequitable service delivery.
Conclusions:
Third-sector organisations described extensive unmet needs across functional, social, and environmental domains during the pandemic. Our study identified important gaps related to carers' perspectives, rare neurological conditions, and inequalities that future research and policy should address to build resilience in future crises.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.