"What We Need from the U.K Healthcare System for Our Children with Autism": Voices of Parents / Carers Captured through Qualitative Interviewing.

Background: Children with Autistic Spectrum Conditions (ASCs) often require access to multiple areas of healthcare provision through the course of their development, due to increased presentation of both physiological and psychiatric co-morbidities. It is hoped that this medical support is delivered in a timely, fully integrated, and appropriately individualised way to adequately support autistic individuals and their families.

Objectives: No published data are available in the U.K. reporting how satisfied parents / carers are with the level of health-related support that their dependents with ASC receive. This qualitative interview study aimed to collect those views in addition to parental suggestions for possible improvement of future health care provision, with a focus on the use of hospital passports (dossiers of integrated patient information).

Methods: Data were obtained from 24 voice-recorded, semi-structured interviews (mean duration 60 minutes) with parents / carers of children with ASC, aged between 0-18 years. Interviews took place predominantly in participants own homes (3 took place in a quiet interview room in the Medway School of Pharmacy). Parents were asked to describe specific past experiences of healthcare provision for their children with autism and to define factors which led to overall level of satisfaction. The services surveyed were General practitioners (GP’s), Paediatric services, Child & Adolescent Mental Health services (CAMHS), Accident & Emergency and inpatient hospital admissions. Parents were asked to offer suggestions to improve future practice. Finally parents were asked if they were aware of hospital passports, and if they could improve provision. Interviews were anonymised and transcribed, and thematic analysis was used to identify, analyse and report thematic frequency within the data.

Results: Parents gave examples of both positive and negative experiences with healthcare provision in all sectors. The dominant theme to emerge which appeared to discriminate positive & negative experiences was the amount of autism-related knowledge parents felt that healthcare professionals (HCPs) demonstrated in their practice, along with the depth of their understanding of the range of possible individual presentations of ASC. A secondary theme highlighted a need for the appropriate level of communication and interaction between the health care professional and the child, and for the HCP to actively listen to the parents and to treat them as “experts” regarding their child. Parental suggestions for improvement aimed at optimising the holistic health outcome for the child, and overall family satisfaction will be discussed.

Conclusions: The suggestion of use of the hospital passport for children with autism was met with overwhelmingly positive reviews as parents felt it could be used in an integrated way across a variety of healthcare settings to improve information dissemination and communication between health care professionals and families.