A window into the reality of families living long term with challenging behaviours after a TBI.

IF 1.7 3区 心理学 Q4 NEUROSCIENCES Neuropsychological Rehabilitation Pub Date : 2024-05-23 DOI:10.1080/09602011.2024.2354402
Charlotte Hendryckx, Mélanie Couture, Nadia Gosselin, Emily Nalder, Mireille Gagnon-Roy, Geneviève Thibault, Carolina Bottari
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Abstract

Challenging behaviours are a long-term burden for people with traumatic brain injury (TBI) and their families. Families frequently shoulder the responsibility alone, but little is known about the strategies they use to manage these behaviours. This study aimed to 1) identify the coping strategies used by people with TBI living in the community and their family caregivers to manage challenging behaviours; and 2) describe the similarities and differences between strategies used by people with TBI and caregivers. In this qualitative descriptive design, individual semi-structured interviews were conducted with adults with TBI and their caregivers and were inductively analyzed. The sample included 10 dyads and two triads, totalling 12 caregivers (8 women) and 14 individuals with TBI (6 women; 21.71 ± 10.84 years post-injury). Participants' strategies were proactive (prevention), reactive (response), or retroactive (aftercare). Most strategies were described by caregivers. Some of them were effective and lasting, others not, reflecting how they adapted their approaches over time. Families put in place various strategies in their life's journey, such as giving feedback or adapting the environment. Despite these strategies supporting long-term community living, the need for ongoing support is underscored, as crises may still occur, impacting families' quality of life.

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创伤性脑损伤后有挑战性行为的家庭长期生活的现实之窗。
挑战行为是脑外伤(TBI)患者及其家人的长期负担。家人常常独自承担起这一责任,但对他们管理这些行为的策略却知之甚少。本研究旨在:1)确定生活在社区中的创伤性脑损伤患者及其家庭照顾者在处理具有挑战性的行为时所使用的应对策略;2)描述创伤性脑损伤患者和照顾者所使用的策略之间的异同。在这一定性描述设计中,对患有创伤性脑损伤的成年人及其照顾者进行了个人半结构化访谈,并进行了归纳分析。样本包括 10 个二人组和 2 个三人组,共计 12 名照顾者(8 名女性)和 14 名创伤性脑损伤患者(6 名女性;伤后 21.71 ± 10.84 年)。参与者的策略分为主动策略(预防)、被动策略(应对)或追溯策略(事后护理)。大多数策略都是由护理人员描述的。其中有些策略有效且持久,有些则不然,这反映出他们是如何随着时间的推移调整自己的方法的。家庭在他们的人生旅途中实施了各种策略,例如给予反馈或调整环境。尽管这些策略支持长期社区生活,但仍强调需要持续的支持,因为危机仍可能发生,影响家庭的生活质量。
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来源期刊
Neuropsychological Rehabilitation
Neuropsychological Rehabilitation 医学-神经科学
CiteScore
6.30
自引率
7.40%
发文量
78
审稿时长
>12 weeks
期刊介绍: Neuropsychological Rehabilitation publishes human experimental and clinical research related to rehabilitation, recovery of function, and brain plasticity. The journal is aimed at clinicians who wish to inform their practice in the light of the latest scientific research; at researchers in neurorehabilitation; and finally at researchers in cognitive neuroscience and related fields interested in the mechanisms of recovery and rehabilitation. Papers on neuropsychological assessment will be considered, and special topic reviews (2500-5000 words) addressing specific key questions in rehabilitation, recovery and brain plasticity will also be welcomed. The latter will enter a fast-track refereeing process.
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