Wallin Viktoria, Carlander Ida, Sandman Per-Olof, Ternestedt Britt-Marie, Håkanson Cecilia
Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden; Palliative Research Centre, Ersta University College and Ersta Hospital, Stockholm, Sweden.
J Clin Nurs. 2014 Oct;23(19-20):2748-56. doi: 10.1111/jocn.12518. Epub 2013 Dec 26.
To explore partners' experiences of everyday life in caring for a dying person with eating deficiencies at home.
When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons' eating deficiencies on their partners, from the perspective of everyday life.
A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.
Nine people were purposefully selected and interviewed three-six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.
The partners described experiences of how eating deficiencies brought about changes in the participants' everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners' habits were changed.
Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.
The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.
探讨伴侣在家照顾临终且有饮食不足问题患者时的日常生活经历。
当临终患者在家接受护理时,饮食不足会影响家庭成员的日常生活,因为他们通常负责提供食物和膳食。文献显示这会带来情感压力。临终患者的伴侣作为照顾者以及即将失去生活伴侣的一方都面临挑战。需要开展研究,从日常生活角度深入了解临终患者的饮食不足对其伴侣的影响。
选择质性研究设计,以获取与姑息性家庭护理临床情境相关的基于经验的知识。
有目的地选取了9人,在其伴侣去世三至六个月后进行访谈。数据收集与分析采用解释性描述法。
伴侣们描述了饮食不足如何给参与者的日常生活带来变化的经历。确定了两种经历模式:在涉及食物和用餐时间的事情上为临终伴侣尽力而为所面临的挑战,以及努力维持正常状态的经历,包括尽管临终伴侣习惯改变时会有陌生感,但仍坚持围绕食物的社会价值观。
从照顾角度以及个人幸福来看,在生命末期与饮食不足的人生活在一起具有挑战性。
研究结果可帮助姑息性家庭护理团队和其他医疗保健专业人员提供超越食物实用建议的支持。建议通过提问并开启对话,就家中当前的食物和用餐情况展开讨论。