Finding a pathway – through a procedure in a high-technology environment for a child with an autism spectrum disorder from the perspectives of parents and healthcare professionals

• This thesis framed in the area of disability research describes the pathway for a child with autism spectrum disorder (ASD) through a procedure in a high-technology environment, anaesthesia or radiographic procedures from the perspectives of parents and healthcare professionals. Visiting healthcare services for such procedures can be challenging for a child with ASD partially because of all the stressors in the environment but also because of the preparation phase and the interruptions in the daily routines. Finding the most suitable pathway puts high demands on parents and healthcare professionals and the organisation.This thesis aims to explore and deepen the understanding of the pathway of a child with ASD through a procedure in a high-technology environment from the perspectives of parents and healthcare professionals.Four studies with different methods were conducted to achieve this overall aim, and the four studies had sub-aims connected to the overall aim. Study I explored the parent’s experience of procedures in the high-technology environment together with their child with ASD. Data were collected by a systematic literature review and were obtained from ten studies describing the parents’ experiences. Studies II and III used critical incident technique (CIT) to identify healthcare professionals’ different experiences of situations and actions when leading a child with ASD through a procedure. Twenty healthcare professionals were interviewed, and the interviews revealed over five hundred situations and actions. The situations and actions were then clustered and analysed separately. In Study IV, the parents described the path through a procedure from their own perspective and also from the child’s perspective. The analysis was conducted using reflexive thematic analysis.The findings revealed the complexity of leading a child with ASD through a procedure, underscoring the interplay between the child's impairment and the demanding environment. Parents expressed a profound sense of responsibility for their child's well-being during procedures, and potential consequences of the procedure for the child. Healthcare professionals described a challenge in those situations in relation to the child, the parents, and organisational structures. Healthcare professionals have a great role in facilitating the child’s progress during a procedure in high-technology environments, and in collaboration with the parents the best outcome can be achieved.Through the lens of the Person Process Context Time model (PPCT model) the findings contribute to a deeper understanding of the complexity of leading a child with the disabilities associated with ASD through an environment full of sensory stimuli. Additionally, the findings can contribute as a tool for healthcare professionals in such situations. The healthcare professionals also need to be aware of the burden and loneliness the parents feel in those situations and the tools they require to navigate through the procedure. Furthermore, this thesis underscores the importance of initiating discussions around the use, impact, and consequences of physical restraint during those procedures.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Nyckelord

children with autism

parents

healthcare professionals

high-technology environment

procedures

experiences

Publikations- och innehållstyp

vet (ämneskategori)

dok (ämneskategori)