Objective: Although the long-term consequences of acquired brain injury are frequent and diverse, care and support over the longer term is an under-addressed issue. This study aims to identify the perceived needs of people with acquired brain injury and their partners.Methods: Interviews with four focus groups of people with brain injury (n = 17) and three partner groups (n = 19) were audio- and videotaped, transcribed verbatim and analyzed using inductive content analysis.Results: Needs were perceived on the intrapersonal, social, healthcare and societal levels, focusing on three themes: 1) Adaptation to changes, including awareness of consequences, acceptance, role changes and dealing with these; 2) Understanding from relatives/friends, professionals, institutions and society; 3) Timely, individualized care, involving information, transition to home, searching for support, peer support and support for partner/family.Discussion: The variety and complexity of needs show that people with brain injury and their partners need to find a new balance in order to live a fulfilling life despite the consequences of brain injury. The overarching need for continuity of care from the transition to home onwards provides important implications for supporting the process of learning how to live well with brain injury.

中文翻译：

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在生活中寻找新的平衡：关于获得性脑损伤患者和伴侣的长期需求的定性研究。

目标：虽然获得性脑损伤的长期后果是频繁和多样的，但长期的护理和支持是一个没有得到充分解决的问题。本研究旨在确定获得性脑损伤患者及其伴侣的感知需求。 方法：对四个脑损伤患者（n = 17）和三个合作伙伴群体（n = 19）的访谈进行录音和录像，逐字转录并使用归纳内容分析进行分析。 结果：在个人、社会、医疗保健和社会层面上感知需求，重点关注三个主题：1）适应变化，包括对后果的认识、接受、角色变化和处理这些；2) 亲友、专业人士、机构和社会的理解；3) 及时、个性化的护理，涉及信息，过渡到家、寻求支持、同伴支持和对伴侣/家人的支持。 讨论：需求的多样性和复杂性表明，脑损伤患者及其伴侣需要找到新的平衡点，以便不顾后果地过上充实的生活的脑损伤。从过渡到家庭之后对护理连续性的总体需求为支持学习如何在脑损伤中健康生活的过程提供了重要意义。