The difficulties perceived by parents of children with autism spectrum disorders in the healthcare settings. A pilot study.

INTRODUCTION Children with Autism Spectrum Disorders (ASDs) usually have comorbidities (e.g. epilepsy, attention deficit/hyperactivity disorder) and tend to access the health services more often than children with typical development. They may encounter difficulties in healthcare settings due to sensitivity to stimuli, anxiety, difficulty in communicating and dealing with unfamiliar places [1]. This can reduce therapeutic compliance and make the healthcare experience particularly difficult. Knowing the parents’ point of view is important to counteract negative behavioral responses and improve the adherence to clinical care procedures [2]. The purpose of the study is to assess the difficulties experienced by children with ASDs in health service through their parents’ perceptions, in order to define good practices to improve their care. MA TERIALS AND METHODS A cross-sectional descriptive-observational study was conducted. From April to August 2020, a questionnaire was administered to parents of children with ASDs living in Italy, contacted through social networks and sector associations. RESUL TS 53 parents fulfilled the questionnaire (n = 42 mothers, 79.2%). The parents are between 25 and 51 years old (m = 39.2; sd = 6.3); 29 (54.7%) work and 18 (34%) have a university education. The children are between 2 and 12 years old (m = 7.0; sd = 2.6). The prevalence of male children is 83%. For the care of children, the participants have turned mainly to pediatric wards (n = 44) and emergency departments (n = 39). 55.8% state that they are little or not at all satisfied with how the child is cared for. 47.2% are little or not at all satisfied with how the parent is involved in the care of the child. 71.2% are little or not at all satisfied with how the parent is supported in the management of the child’s pathology. Only 32.1% of parents perceive that doctors are helping their child a lot; as far as nurses are concerned, the percentage drops to 17%. 60.4% of parents found it difficult when they turned to a health service. Among the difficulties complained, 17 (32.1%) report poor preparation of health professionals with respect to autism, 9 (17%) care procedures too long and 7 (13.2%) difficulties in communication. 58.5% (n = 31) report that they found in pediatrics the best trained staff to assist the child ASDs. CONCLUSION The study shows high levels of parental dissatisfaction with health services due to the difficulties encountered during caring for their children. It might be useful to evaluate nurses and doctors’ perspectives, in order to introduce dedicated actions and tools to improve caring relationship with ASDs children. REFERENCES [1] Muskat B, Burnham Riosa P, Nicholas DB, Roberts W, Stoddart KP, Zwaigenbaum L. Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals. Autism. 2015;19(4):482-90. [2] Quiban C. Addressing needs of hospitalized patients with autism: partnership with parents. Crit Care Nurs Q. 2020;43(1):68-72.