Department of Psychiatry and Neuropsychology, School of Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands.
Limburg Brain Injury Center, Maastricht University, Maastricht, The Netherlands.
Brain Inj. 2020 Feb 23;34(3):421-429. doi: 10.1080/02699052.2020.1725125. Epub 2020 Feb 17.
: 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.: 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.: 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.: 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.
虽然后天性脑损伤的长期后果频繁且多样，但长期护理和支持是一个未得到充分关注的问题。本研究旨在确定后天性脑损伤患者及其伴侣的感知需求。
对 4 个脑损伤患者焦点小组（n=17）和 3 个伴侣小组（n=19）进行了访谈，对访谈进行了录音和录像，并逐字转录，然后使用归纳内容分析法进行了分析。需求被认为存在于个人内部、社会、医疗保健和社会层面，重点关注三个主题：1）适应变化，包括对后果的认识、接受、角色变化以及应对这些变化；2）从亲属/朋友、专业人员、机构和社会中获得理解；3）及时的、个性化的护理，包括信息、向家庭过渡、寻找支持、同伴支持和对伴侣/家庭的支持。
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，以便在脑损伤的后果下过上充实的生活。从过渡到家庭开始就需要持续护理的总体需求，为支持学习如何与脑损伤一起生活的过程提供了重要启示。
