Dementia Centre for Research Collaboration, 1969Queensland University of Technology, Brisbane, Queensland, Australia.
Faculty of Health, 1969Queensland University of Technology, Brisbane, Queensland, Australia.
Dementia (London). 2022 Apr;21(3):794-809. doi: 10.1177/14713012211056461. Epub 2021 Dec 6.
Many spousal caregivers experience stress, depression, loneliness, guilt and grief when placing a partner with dementia into long-term care. However, there is little research about their transitional support experiences, needs and preferences. This study aimed to gain a deeper understanding of these issues from spousal caregiver and long-term care facility staff perspectives, to inform subsequent support and intervention development.
Semi-structured interviews and small group discussions were held separately with spousal caregivers ( = 9) and care facility staff ( = 11). Criterion and variation sampling aimed to ensure a range of experiences and perspectives. The 'Framework' approach was utilised for data analysis. Interpretation was with respect to underpinning models of stress-grief process in dementia caregiving.
A range of informational, psychoeducational and psychosocial supports were identified to help spousal caregivers cope better with the stressors and losses experienced throughout the transition from home to long-term care. Improved education about disease progression, information relating to long-term care provision, peer support and dementia-specific grief counselling were deemed important. Opportunities for better support within care facilities were also identified. Support should be tailored to individual needs and preferences.
The findings suggest a supportive care framework be developed, encompassing the trajectory from assessment for and admission into long-term care to end-of-life and post-bereavement support. Spousal caregivers should have their support needs assessed by trained health or social care professionals and be offered a range of support options as appropriate.
许多配偶照顾者在将患有痴呆症的伴侣送往长期护理机构时会经历压力、抑郁、孤独、内疚和悲伤。然而,关于他们过渡支持的经历、需求和偏好的研究甚少。本研究旨在从配偶照顾者和长期护理机构工作人员的角度更深入地了解这些问题,为后续的支持和干预措施的发展提供信息。
分别对配偶照顾者(=9)和护理机构工作人员(=11)进行了半结构式访谈和小组讨论。标准和变异抽样旨在确保涵盖各种不同的经历和观点。利用“框架”方法进行数据分析。解释的依据是痴呆症护理中压力-悲伤过程的模型。
确定了一系列信息、心理教育和心理社会支持,以帮助配偶照顾者更好地应对从家庭到长期护理机构过渡期间经历的压力源和损失。改善对疾病进展、长期护理提供相关信息、同伴支持和特定于痴呆症的悲伤咨询的教育被认为很重要。还确定了在护理机构内提供更好支持的机会。支持应根据个人的需求和偏好进行定制。
研究结果表明,应制定一个支持性护理框架,涵盖从评估和入院到长期护理到临终和丧亲后支持的整个过程。应通过训练有素的医疗或社会保健专业人员对配偶照顾者的支持需求进行评估,并根据需要提供一系列支持选项。