Neurological patients’ and caregivers’ post-discharge challenges explored in a World Café

Abstract

Problem/backgroundPost-discharge healthcare for patients with neurological conditions is indicated to be suboptimal. AimTo capture hospital discharge experiences and ramifications among patients with neurological conditions, and informal caregivers, and their recommended solutions. MethodsA modified World Café was held November 2016. A facilitator moderated structured group discussions about post-discharge challenges, displayed real-time in GroupMap. Using the software’s voting, ratings of priority challenges/issues and solutions were tabulated to identify whole group consensus. FindingsEleven adults with neurological conditions (five females) and four adult informal caregivers (three females) participated. Major post-discharge challenges were: (i) inadequate self-management instruction, (ii) feeling discharged too early, (iii) family pressured to support patient without capacity, (iv) financial impact, (v) difficulties accessing social services, (vi) social isolation, (vii) inadequate support services, and (viii) poor communication with, and between, healthcare providers. Top-ranked solutions were: (i) counseling services at symptom onset, (ii) community neurological nurse referrals to, and liaison with, services, (iii) improved communication with general practitioner, (iv) community neurological nurse facilitating financial assistance, and (v) social worker in pre-diagnostic period facilitating financial assistance and support. DiscussionPeridischarge, patients and informal caregivers face a complexity of information and services, and struggle to self-manage conditions, experiencing burden that jeopardises their health and wellbeing. Proposed solutions to post-discharge challenges emphasise self-management, psychosocial support, care coordination, health system navigation, and communication. ConclusionGeneric community neurological nurses could link hospital and community-based services. Research is required regarding which translational and after hospitalisation care model improves care coordination and continuity, and care recipients’ capacity.