Pasek Małgorzata, Stoietskyi Monika, Goździalska Anna, Jochymek Małgorzata
Department of Nursing, Faculty of Health, University of Applied Sciences in Tarnów, 8th Mickiewicz St, 33-100 Tarnów, Poland.
Faculty of Health and Medical Studies, Andrzej Frycz Modrzewski Krakow University, 1st Grudziński St, 30-705 Krakow, Poland.
Nurs Rep. 2024 Feb 16;14(1):444-454. doi: 10.3390/nursrep14010034.
Crohn's disease (CD) is a chronic inflammatory bowel disease. The perception of the disease, its troublesome symptoms and the highly involved treatment mean that living with CD requires not only the affected child having to learn to cope with it, but also their parents. The aim of the study was to examine the problems and levels of stress in parents-caregivers of children with CD. The study was cross-sectional and conducted using the diagnostic survey method. An original questionnaire was used to assess the socio-demographic situation and problems of caring for a child with CD, and the standardised PSS-10 questionnaire was added. The study group consisted of 60 parents who accompanied their children during hospitalization. The surveyed caregivers of children with CD found it difficult to maintain a specialised diet and deal with the need for hospitalization and the chronic use of medications. Access to the necessary knowledge about the disease posed the least difficulty in everyday life for a child with CD. The vast majority of parents (50, 83.34%) felt a high level of stress related to caring for a child with CD and, simultaneously, a lack of acceptance of the child's disease (39, 65%). The age of the respondents did not have a statistically significant effect on the occurrence of problems related to everyday functioning. The acceptance of the child's disease by the parents and informal caregivers of children with CD reduced their stress level. Parents could count on support from their relatives but, unfortunately, institutional support was not properly provided.
克罗恩病(CD)是一种慢性炎症性肠病。对这种疾病的认知、其令人烦恼的症状以及复杂的治疗意味着,患有克罗恩病不仅患病儿童要学会应对,其父母也是如此。本研究的目的是调查患有克罗恩病儿童的父母——照料者所面临的问题和压力水平。该研究为横断面研究,采用诊断性调查方法。使用一份原创问卷评估社会人口状况以及照料患有克罗恩病儿童的问题,并增加了标准化的PSS - 10问卷。研究组由60名在孩子住院期间陪同的父母组成。接受调查的患有克罗恩病儿童的照料者发现,维持特殊饮食以及应对住院需求和长期用药很困难。对于患有克罗恩病的儿童来说,获取有关该疾病的必要知识在日常生活中造成的困难最小。绝大多数父母(50名,83.34%)感到与照料患有克罗恩病的孩子相关的压力很大,同时,对孩子的疾病缺乏接纳(39名,65%)。受访者的年龄对日常功能相关问题的发生没有统计学上的显著影响。患有克罗恩病儿童的父母和非正式照料者对孩子疾病的接纳降低了他们的压力水平。父母可以指望亲戚的支持,但不幸的是,机构支持并未得到妥善提供。