Mothers of children with autism spectrum disorder: Their views on their children's hospital experiences, expectations from nurses, and a hospital environment sensitive to differences – A qualitative study

INTRODUCTION AND AIM: Children with Autism Spectrum Disorder (ASD) tend to require healthcare services more frequently than their neurotypical peers. With the increasing prevalence and high rates of medical comorbidities, it has become increasingly important for healthcare providers and care systems to meet the healthcare requirements of children with ASD. This study aims to examine the hospital experiences of mothers raising children with ASD, their expectations from nurses, and their views on a hospital environment sensitive to differences. MATERIAL AND METHOD: A qualitative research framework was used in this study, drawing from phenomenology. The study population consisted of mothers with children aged 2-6 years with ASD in three different provinces across three geographical regions of Turkey. The study sample consisted of 30 mothers whose children had an autism diagnosis based on the DSM-V criteria and met the inclusion requirements. In the analysis of the data, inductive coding was followed methodologically and support was obtained from the Max Qualitative Data Analysis (MAXQDA) Analytics Pro Program. The permission of the ethics committee of the institution for the research was obtained in writing, and the consent of the mothers was obtained verbally and in writing by reading the consent form accompanied by audio recording. RESULTS: Three themes were obtained as a result of thematic analysis. The theme of 'Evaluations on Autism Spectrum Disorder' was defined with 15 codes, the theme of 'Evaluations on Nurse Care' was defined with 9 codes, and the theme of 'Suggestions' was defined with 12 codes. CONCLUSION: In the study, it was determined that mothers with children with ASD had difficulties in daily life due to their children's sensory sensitivity. In order to increase their satisfaction with health care services, the mothers made recommendations for making hospital environments suitable for children with ASD, for nurses to be more conscious by receiving training on ASD, and for parents to obtain accurate information and to be in solidarity. Keywords: Autism spectrum disorder, health care needs, mothers' experiences, a hospital sensitive to differences, pediatric nurse.