Ring Jacobsson Lisa, Milberg Anna, Hjelm Katarina, Friedrichsen Maria
Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden.
Palliative Education & Research Centre, and Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden.
J Clin Nurs. 2016 May;25(9-10):1229-37. doi: 10.1111/jocn.13123. Epub 2016 Jan 27.
To explore the lived experiences of women with coeliac disease after attending a patient education programme, to gain a broader perspective of its influence.
Adults, particularly women, with coeliac disease report suffering from poor well-being and reduced quality of life in terms of health. Patient education programmes might support and encourage them in the search for possible improvements in lifestyle and in their approach to the disease.
A qualitative phenomenological study.
Personal narrative interviews with 14 women suffering from coeliac disease who had participated in an educational programme. Data analysis in accordance with Giorgi was performed.
The essential structure of women's lived experiences following their participation in the patient education programme was found to be an interaction with others with the same disease, which left the women feeling individually strengthened. The interaction enabled the participants to acquire a broader view of their life with coeliac disease. As a result, this realigned their sense of self in relation to their own disease.
In coping with coeliac disease, it seems that women need interaction with others with the disease to experience togetherness within a group, get the opportunity to compare themselves with others and to exchange knowledge. The interaction appears to result in that women acquire an overview of life with the disease, develop a greater confidence and dare to try new things in life.
When designing a patient education programme it seems important to consider the needs of persons to meet others with the same disease, and to ask them about their need for knowledge, rather than simply assuming that health care professionals know what they need.
探讨乳糜泻女性患者参加患者教育项目后的生活体验，以更全面地了解其影响。
患有乳糜泻的成年人，尤其是女性，报告称健康状况不佳，生活质量下降。患者教育项目可能会支持并鼓励她们寻求生活方式的可能改善以及应对疾病的方法。
一项质性现象学研究。
对14名参加过教育项目的乳糜泻女性患者进行个人叙事访谈。按照 Giorgi 的方法进行数据分析。
发现女性患者参加患者教育项目后的生活体验的基本结构是与其他患有相同疾病的人互动，这让她们个人感到更有力量。这种互动使参与者能够更全面地看待自己患乳糜泻的生活。结果，这重新调整了她们与自身疾病相关的自我认知。
在应对乳糜泻时，女性似乎需要与其他患有该疾病的人互动，以在群体中体验团结，有机会与他人比较并交流知识。这种互动似乎使女性能够全面了解患该疾病的生活，增强信心并敢于在生活中尝试新事物。
在设计患者教育项目时，考虑患者与其他患有相同疾病的人见面的需求，并询问他们的知识需求，而不是简单地假设医护人员知道他们的需求，这似乎很重要。
