Årestedt Liselott, Persson Carina, Benzein Eva
School of Health and Caring Sciences, Linneaus University, Kalmar, Sweden.
Scand J Caring Sci. 2014 Mar;28(1):29-37. doi: 10.1111/scs.12023. Epub 2013 Jan 15.
The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.
Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.
A qualitative design with a FSN approach was chosen.
Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.
The phenomenon can be described as an ongoing movement towards well-being. The results included two themes and five sub-themes. The first theme was 'Co-creating a context for living with illness' with the subthemes; 'learning to live with the expressions of illness' and 'communicating the illness within and outside the family'. The second theme was 'Co-creating alternative ways for everyday life' with the subthemes; 'adapting to a new life rhythm', 'altering relationships' and 'changing roles and tasks in the family'.
Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co-create a context for living with illness. They also co-create a context for alternative ways of everyday life.
Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family.
本研究旨在阐明在慢性病背景下作为一个家庭生活的实际体验的意义。
慢性病意味着个人和家庭都要做出改变。在这种变化的情况下，所有家庭成员似乎都能从分享经历和获得支持中受益。当前的研究突出了个体患者或家庭成员对慢性病的看法，但家庭系统护理（FSN）研究很有必要。
选择了采用家庭系统护理方法的质性设计。
对七个患有慢性病的家庭进行了多次质性叙事访谈。采用受里科尔启发的现象学诠释学分析来解读数据。
该现象可描述为朝着幸福的持续动态过程。结果包括两个主题和五个子主题。第一个主题是“共同创造与疾病共存的环境”，子主题为“学会与疾病的表现共存”和“在家庭内外交流疾病情况”。第二个主题是“共同创造日常生活的替代方式”，子主题为“适应新的生活节奏”、“改变人际关系”和“改变家庭中的角色与任务”。
在慢性病背景下作为一个家庭生活可被描述为一个持续的过程，在此过程中家庭成员共同创造与疾病共存的环境，他们还共同创造日常生活替代方式的环境。
了解在慢性病背景下作为一个家庭生活的实际体验，有助于护士采用家庭系统护理的视角。这可以增加利用家庭成员共同应对情况的方式的机会，同时突出家庭内部的资源。
