School of Nursing & Midwifery, Trinity College Dublin, Dublin, Ireland.
Child Care Health Dev. 2022 Jul;48(4):558-568. doi: 10.1111/cch.12960. Epub 2022 Jan 25.
Chronic health conditions experienced by children with severe and profound intellectual disabilities are accompanied by numerous challenges because of the prolonged period over which children take medication and the large number of drugs they take. Mothers experience many challenges in giving medicines, from difficulties in physical administration to manipulation of medication, covert administration and alternative formulations. The aim of this study was to explore mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities.
A hermeneutic phenomenological approach was used. Semistructured face-to-face interviews and participant diaries were adopted for data collection, resulting in 28 interviews undertaken and 7 diaries completed with mothers of children with severe and profound intellectual disabilities. Van Manen's method for thematic analysis was used for data analysis.
The concept of time and the impact of giving medicines were apparent, mothers being 'always on call' and the constant full-time pace of their caring role evident. There was little spontaneity in their lives, dampened by the routine of giving medicines and their caregiving role. The necessity to be prepared and organized was highlighted as important in ensuring children got their medications on time and safely.
This study provides insight into the phenomenon of mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. It has enabled exploration and familiarity with the lifeworld of mothers and offers meaning on the phenomena of giving medicines. It was concluded that this experience is a relentless and challenging one, yet appears invisible as an element of care in professional discourse. Through addressing the gap in understanding and exploring the meaning of this phenomenon, it may be useful in developing care for mothers and children with severe and profound intellectual disabilities.
患有严重和极重度智力残疾的儿童会经历慢性健康问题，由于儿童服药时间长且服用的药物种类繁多，这给他们带来了许多挑战。母亲在给孩子喂药时会遇到很多困难，从药物的身体管理到药物的操作、隐蔽给药和替代剂型等。本研究旨在探讨母亲给患有严重和极重度智力残疾的儿童喂药的亲身经历。
采用解释学现象学方法。采用半结构化面对面访谈和参与者日记的方式进行数据收集，共进行了 28 次访谈和 7 次患有严重和极重度智力残疾儿童母亲的日记。采用范马南的主题分析方法进行数据分析。
时间的概念和给药的影响显而易见，母亲们“随时待命”，她们照顾孩子的全职节奏也始终不变。她们的生活几乎没有自发性，被喂药和照顾孩子的日常所抑制。为了确保孩子按时、安全地服药，做好准备和组织是非常重要的。
本研究深入了解了母亲给患有严重和极重度智力残疾的儿童喂药的亲身经历。它探索并熟悉了母亲的生活世界，对喂药现象提供了意义。研究得出的结论是，这种体验是一种无休止且具有挑战性的体验，但作为专业话语中护理的一个元素，它似乎是无形的。通过了解这一现象的差距并探索其意义，它可能有助于为患有严重和极重度智力残疾的母亲和儿童提供护理。
