Battle weary/battle ready: A phenomenological study of parents' lived experiences caring for children with autism and their safety concerns

• Published in: Journal of advanced nursing 2020-01, Vol.76 (1), p.221-233
• Main Authors: Celia, Tania, Freysteinson, Wyona, Fredland, Nina, Bowyer, Patricia
• Format: Article
• Language: English
• Subjects: autism; Autistic children; Caregiving; Disappointment; Health care; healthcare providers; Interviews; Medical personnel; nurses; Nursing; nursing care; parents; Parents & parenting; Phenomenology; Qualitative research; Resilience; safety; Snowball sampling; Uncertainty
• ISSN: 0309-2402; 1365-2648
• DOI: 10.1111/jan.14213

Aim The first aim of this study was to explore the lived experiences of parents caring for their autistic children and their experiences with safety for these children. The second aim was to elicit safety recommendations from the parents of autistic children. Design Hermeneutic phenomenology. Methods Fifteen participants who self‐reported they were parents of children with autism were recruited via snowball sampling. Data were collected from September 2017–December 2018 in audiotaped interviews using semi‐structured questions. Interviews were held with four participants to determine if the findings represented their experiences and concerns accurately. Results Two underlying structures which demonstrated the trajectory of the experience caring for autistic children were lost/finding our way and battle ready/battle weary. The phenomenological themes within battle weary included living with fear, living with uncertainty and living with disappointment. Resilience was a fourth phenomenological theme which supported the experience of being battle ready. The participants provided recommendations for other parents and healthcare professionals to help keep autistic children safe. Conclusion This study illustrates the unique perspective of parents of autistic children concerning autism and safety. Impact Most parents in this sample reported they faced substantial issues with safety for their child. Study results demonstrated that parents received little to no information about safety from healthcare professionals. Parents of autistic children and healthcare professionals need to be educated about safety issues to prevent injuries and death. 目的 此项研究的首要目的是探讨父母照顾自闭症儿童的生活经历以及对这些儿童安全问题的经验。第二个目的是从自闭症儿童父母那里获得安全防护建议。 设计 诠释现象学。 方法 我们通过雪球式抽样招募了15名自我报告为自闭症儿童父母的参与者。我们在2017年9月至2018年12月期间,通过采用半结构化问题在录音采访中收集了数据。我们与采访了四名参与者,从而确定调查结果是否准确反映了他们的经历和问题。 结果 两个基本结构表明照顾自闭症儿童的轨迹为迷茫或是找到适合的方法,以及厌战或已做好战斗准备。厌战中的现象学主题包括在生活中担惊受怕、迷茫和失望。恢复是现象学的第四个主题,这支撑着父母准备好战斗。参与者为其他父母和医护专业人员提供了建议,从而帮助保障自闭症儿童的安全。 结论 此项研究表明自闭症儿童对自闭症和儿童安全有独特的看法。 影响 此样本中的多数父母报告表示他们面临着孩子安全的实质性问题。研究结果表明,父母几乎没有从医护专业人员处得到有关保障孩子安全的信息。自闭症儿童的父母和医护专业人员需要接受安全教育,从而防止自闭症儿童受伤和死亡。