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

Abstract

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.

Parents’ experiences of caring for a child with autism spectrum disorder in the United States: A systematic review and metasynthesis of qualitative evidence.

“…This need was corroborated in Hock et al (2012), Hurlbutt (2011), and Moodie-Dyer et al (2014), where couples noted one parent decided to end their career to take care of their child with ASD. Parents in Celia et al (2020) and Schaaf et al (2011) described the need to transition into a constant hypervigilant state of alertness to protect their children with ASD, including physical modification of their houses to prevent elopement and other dangers. Lloyd et al (2019) noted that 38% of parents in their study experienced extreme difficulty in completing daily routine activities due to the unpredictable nature of ASD.…”

“…Parents frequently experienced stigma from relatives, friends, and strangers in the community. Celia et al (2020) and Neely-Barnes et al (2011) observed that, because ASD does not have phenotypic manifestations, a child with ASD who is having trouble in public is often assumed by outsiders to be a misbehaving child, with social repercussions for both the child and parents. One 16-year-old sibling with cerebral palsy in Neely-Barnes et al (2011) noted that other people are more cruel to her 12-year-old brother with ASD than to her because they misinterpret his ASD.…”

“…Parents in Lloyd et al (2019) mentioned feeling abandoned as families and friends began to end relationships. Parents in Celia et al (2020) and Hock et al (2012) reported they found it easier and safer to remain at home as much as possible, including the observation that daily tasks as simple as a trip to the grocery store became an arduous undertaking. Some parents in Daughrity (2019) noted their school-aged children with ASD had no friends outside of family members, and others reported difficulty in maintaining friendships once developed.…”

Knowledge about childhood autism among nurses in Turkey: A cross‐sectional descriptive study

“…In this study, 59% of the participants believed that the family members of children with ASD do not experience psychological problems (Table 2). However, it has been found that the family members and caregivers of children with autism experience psychological problems such as depression, fear, uncertainty, and guilt 32–36 . Chronic diseases lower quality of life by increasing care burden 37 .…”

Homicide Incidents Involving Children with Autism Spectrum Disorder as Victims Reported in the US News Media, 2000–2019

“…The most common sources of stress expressed by parents include child behavior and development, etiology of ASD, nancial costs, family relationships, uncertainty with the future, and autism-related services (Hall and Graff 2010;Tehee et al 2009). Parents and caregivers often report feeling felt misunderstood by others, including healthcare providers and family members (Celia et al 2020). Mothers have reported spending signi cantly more time caring for their autistic children, feeling more fatigued, and experiencing twice as many days with stress compared to mothers of children without ASD (Smith et al 2010).…”