Neda Taghizadeh1,2,3, Gaylene Heard3,4,5, Andrew Davidson1,6,7, Katrina Williams2,8,9, David Story4. 1. Anesthesia Trial Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia. 2. Department of Pediatrics, University of Melbourne, Parkville, Victoria, Australia. 3. Department of Anesthesia, Royal Dental Hospital, Carlton, Victoria, Australia. 4. Department of Anesthesia, Perioperative and Pain Medicine Unit, University of Melbourne, Parkville, Victoria, Australia. 5. Department of Anesthesia and Acute Pain Medicine, St Vincent's Hospital, Fitzroy, Victoria, Australia. 6. Department of Anesthesia and Pain Management, Royal Children's Hospital Melbourne, Parkville, Victoria, Australia. 7. Melbourne Children's Trial Centre, Murdoch Children's Research Institute, Parkville, Victoria, Australia. 8. Neurodevelopment and Disability Department, Royal Children's Hospital, Parkville, Victoria, Australia. 9. Developmental Disability and Rehabilitation Research Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia.
Abstract
BACKGROUND: Autism Spectrum Disorder is now diagnosed in more than 1% of children in Australia and USA. Children with autism spectrum disorder may have additional health care needs, require more specialized services for their health care, or experience more difficulties during hospital attendance. Customized care for these children may assist in decreasing potentially challenging behaviours during hospitalization. The purpose of this study was to explore the experiences of children with autism spectrum disorder and their caregivers during attendance for day procedures in two hospitals in Melbourne, Australia. Further, the perceptions of their health care providers were explored. METHODS: Twenty-nine participants, including 14 health care providers and 15 caregivers of children with autism spectrum disorder, were interviewed within 72 hours of their day procedure attendance at the Royal Children's Hospital and the Royal Dental Hospital in Melbourne, Australia. Interviews were recorded digitally, then transcribed and coded. Mixed quantitative and qualitative methods (content analysis) were used. RESULTS: Hospital attendance was often stressful. Participants identified a number of facilitating factors including good communication, clear explanations, and friendly attitudes of staff. Flexibility and individualized care of patients (such as avoiding unnecessary blood pressure measurements, and not changing into hospital gowns) were valued. Supportive aids (such as computers or special interest objects), use of social stories, and giving premedication were all considered helpful. Perceived barriers to care included prolonged waiting times for operation date as well as waiting on the day of operation, lack of private space, lack of noninvasive equipment such as cutaneous infrared thermometers, poor communication, and inadequate training of staff about autism spectrum disorder. CONCLUSION: Providing optimal care for children with autism spectrum disorder requires a multifaceted approach that may require changes to hospital work flow, staff training, better use of aids (such as tablet computers and social stories), and premedication. Good communication and flexibility are key areas of importance.
BACKGROUND:Autism Spectrum Disorder is now diagnosed in more than 1% of children in Australia and USA. Children with autism spectrum disorder may have additional health care needs, require more specialized services for their health care, or experience more difficulties during hospital attendance. Customized care for these children may assist in decreasing potentially challenging behaviours during hospitalization. The purpose of this study was to explore the experiences of children with autism spectrum disorder and their caregivers during attendance for day procedures in two hospitals in Melbourne, Australia. Further, the perceptions of their health care providers were explored. METHODS: Twenty-nine participants, including 14 health care providers and 15 caregivers of children with autism spectrum disorder, were interviewed within 72 hours of their day procedure attendance at the Royal Children's Hospital and the Royal Dental Hospital in Melbourne, Australia. Interviews were recorded digitally, then transcribed and coded. Mixed quantitative and qualitative methods (content analysis) were used. RESULTS: Hospital attendance was often stressful. Participants identified a number of facilitating factors including good communication, clear explanations, and friendly attitudes of staff. Flexibility and individualized care of patients (such as avoiding unnecessary blood pressure measurements, and not changing into hospital gowns) were valued. Supportive aids (such as computers or special interest objects), use of social stories, and giving premedication were all considered helpful. Perceived barriers to care included prolonged waiting times for operation date as well as waiting on the day of operation, lack of private space, lack of noninvasive equipment such as cutaneous infrared thermometers, poor communication, and inadequate training of staff about autism spectrum disorder. CONCLUSION: Providing optimal care for children with autism spectrum disorder requires a multifaceted approach that may require changes to hospital work flow, staff training, better use of aids (such as tablet computers and social stories), and premedication. Good communication and flexibility are key areas of importance.