Rickett Michelle, Kingstone Tom, Gupta Veenu, Shiers David, French Paul, Lennox Belinda, Penington Ed, Williams Ryan, Hoppe Isobel, Chew-Graham Carolyn A
School of Medicine, Keele University, Keele, UK.
Department of Psychology, Durham University, UK.
Health Expect. 2025 Aug;28(4):e70375. doi: 10.1111/hex.70375.
Early Intervention in Psychosis (EIP) services in England offer up to 3 years' time-limited support to people experiencing early psychosis. Service users (SUs) are discharged to primary care, a community mental health team (CMHT), or other specialist mental health service. The aim of this study is to explore the SU and carer journey through discharge from EIP and into the early post-discharge period.
Qualitative longitudinal study comprising semi-structured interviews with SUs and carers at, or shortly after, discharge from EIP, and follow-up interviews with SUs 6-11 months later. Data collection conducted between January 2023-September 2024 and informed by information power. Data were thematically analysed by a multidisciplinary team.
SUs and carers expressed their desire to be actively involved in EIP discharge planning and decision-making. They contrasted close relationships with EIP practitioners with inaccessibility of care and difficulties navigating healthcare systems after discharge. Some SUs described feelings of abandonment and expressed a wish for transitional support, and proactive, relationship-based care post-discharge. Carers played an important role as patient advocates but were rarely offered support themselves.
Improved collaboration is needed between SUs, carers and primary care/CMHT practitioners in the build-up to EIP discharge. There should be proactive contact from primary care at the point of discharge and in the early post-discharge period. Carer needs are often overlooked; primary care could utilise the 'carers register' and proactively offer support.
Patient and carer involvement and engagement was key to all stages of this study. The research team met regularly with our two co-investigators with lived experience (as a service user and a carer), who contributed to data analysis and writing this paper. We worked closely with our patient and carer advisory group, EXTEND-ing, throughout the research process. They helped formulate research questions, co-designed topic guides and participant information sheets, and contributed to data analysis and interpretation.
英国的早期精神病干预（EIP）服务为患有早期精神病的人提供长达3年的限时支持。服务使用者（SU）出院后会转至初级保健机构、社区精神卫生团队（CMHT）或其他专业精神卫生服务机构。本研究的目的是探索服务使用者和照顾者从EIP出院直至出院后早期阶段的经历。
定性纵向研究，包括在服务使用者和照顾者从EIP出院时或出院后不久进行半结构化访谈，并在6 - 11个月后对服务使用者进行随访访谈。数据收集于2023年1月至2024年9月期间进行，并依据信息力开展。数据由多学科团队进行主题分析。
服务使用者和照顾者表示希望积极参与EIP出院计划和决策制定。他们将与EIP从业者的密切关系与出院后难以获得护理以及在医疗系统中导航的困难进行了对比。一些服务使用者描述了被遗弃的感觉，并表达了对过渡性支持以及出院后基于关系的积极护理的愿望。照顾者作为患者倡导者发挥了重要作用，但他们自己很少得到支持。
在EIP出院前，服务使用者、照顾者与初级保健/CMHT从业者之间需要加强合作。出院时及出院后早期，初级保健机构应主动联系。照顾者需求常常被忽视；初级保健机构可利用“照顾者登记册”并主动提供支持。
患者和照顾者的参与和介入是本研究所有阶段的关键。研究团队定期与我们两位有实际经验的共同研究者（一位是服务使用者，一位是照顾者）会面，他们参与了数据分析并撰写本文。在整个研究过程中，我们与患者和照顾者咨询小组EXTEND-ing密切合作。他们帮助制定研究问题，共同设计主题指南和参与者信息表，并参与数据分析和解读。
