背景:虽然身体上,威廉姆斯综合征(WS)的认知和行为表现影响护理人员生活的每个维度,迄今为止,波兰尚未进行有关父母照顾WS儿童的经历的研究。
方法:为了确定WS儿童波兰照顾者的挑战和需求,对32名家庭照顾者进行了调查,他们得到了波兰威廉姆斯综合症协会的支持。
结果:虽然照顾者大多受到WS儿童行为的挑战,健康问题和情绪波动,许多父母经历了疲劳,与伴侣的亲密关系问题和心理健康恶化。他们还因缺乏自己的时间和护理责任造成的工作限制而感到负担。尽管父母积极评估WS儿童的医疗质量,仍有许多人对波兰WS儿童医疗系统的运作方式表示不满,并抱怨医生缺乏关于WS的知识,获得专科护理,缺乏政府和社会机构的支持。尽管许多父母强调了上升的WS孩子的积极影响,超过一半的人经历了角色被囚禁或角色超负荷,并感到不被他人理解。他们也经历了各种痛苦的情绪,包括不耐烦,情绪不稳定,无助,焦虑和抑郁。
结论:尽管许多WS父母强调了抚养WS儿童的肯定方面,但这项研究表明,照顾这样的孩子的负担远远超出了临床方面,严重影响了父母生活的各个方面,包括他们的心理健康,日常生活,家庭,他们的职业和社交生活。因为除了与照顾WS儿童有关的日常挑战之外,父母与医疗保健系统和支持服务打交道代表了主要问题,有必要对WS采取生物心理社会方法,不仅应包括WS儿童,还有他们的照顾者。这篇文章写了什么?:1。它分析了父母照顾威廉姆斯综合征儿童的挑战和需求;2.它提供的证据表明,照顾WS儿童的影响远远超出临床方面,严重影响父母生活的各个方面,包括他们的心理健康,日常生活,家庭,他们的职业和社交生活;3。这也表明,除了与照顾WS儿童相关的日常挑战外,父母与医疗保健系统和支持服务打交道是主要问题。4.因此,它强调了将生物心理社会方法纳入WS的重要性,该方法不仅应包括WS儿童,还有他们的照顾者。
BACKGROUND: Although physical, cognitive and behavioural manifestations of Williams syndrome (WS) affect every dimension of caregivers lives, no studies on the parental experiences of caring for a WS child have to date been carried out in Poland.
METHODS: In order to identify the challenges and needs of Polish carers of WS children a survey was conducted with 32 family caregivers who were supported by the Polish Williams Syndrome Association.
RESULTS: While caregivers were mostly challenged by their WS child\'s behaviours, health problems and mood swings, many parents experienced fatigue, intimacy problems with the partner and deterioration of mental health. They were also burdened by the lack of time for themselves and work restrictions resulting from caregiving responsibilities. Even though parents positively assessed quality of medical care for WS children, still many expressed their dissatisfaction both with the way the healthcare system for WS children works in Poland and complained about the doctors\' lack of knowledge about WS, access to specialist care and lack of support from government and social institutions. Although many parents stressed positive impact of rising WS child, more than half experienced role captivity or role overload and felt not being understood by others. They also experienced variety of distressing emotions, including impatience, emotional lability, helplessness, anxiety and depression.
CONCLUSIONS: Although many WS parents stressed the affirmative aspect of raising WS child this research shows that the burden of caring for such a child goes far beyond clinical aspects and seriously affects every aspect of parents\' lives, including their mental health, daily lives, family, their professional and social lives. Because apart from the daily challenges related to caring for a WS child, parents\' dealings with the healthcare system and support services represent major problems there is a the need for a bio-psychosocial approach to WS that should include not only WS children, but also their caregivers. WHAT THIS PAPER ADDS?: 1. It analyses the challenges and needs of parents caring for children with Williams syndrome; 2. It provides evidence that the impact of caring for WS children goes far beyond clinical aspects and seriously affects every aspect of parents\' lives, including their mental health, daily lives, family, their professional and social lives; 3. It also shows that, apart from the daily challenges related to caring for a WS child, parents\' dealings with the healthcare system and support services represent major problems. 4. Thereby, it highlights the importance of incorporating a bio-psychosocial approach to WS that should include not only WS children, but also their caregivers.