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Patient-Provider Communication Gap: Barriers to Healthcare for Patients with Autism Spectrum Disorder
Difficulties in social interactions characteristic of an Autism Spectrum Disorder (ASD) diagnosis may make navigating the healthcare system challenging, therefore, having healthcare providers in all sectors of healthcare that are confident and competent in communicating with patients with ASD is paramount.
Preißmann (2017) reported that many providers lack the knowledge, skills and confidence to work with individuals with ASD, which can lead to refusal to treat. Thus, there remains a considerable discrepancy between the number of individuals with ASD seeking medical care and the number of healthcare professionals willing/capable/trained to provide care to them, which might result in long waiting periods, and delays in diagnosis and treatment of medical conditions. Identifying the communication gap between patients with ASD and their healthcare providers is a key to minimize the barriers to healthcare for patients with ASD.
Objectives:
The purpose of this study is to collect healthcare professionals’ perspective on the current barriers to healthcare for patients with ASD, and the need to develop a patient-provider communication instrument/tool that takes in consideration the social skills and language/communication level of patients with ASD.
Methods:
An online questionnaire (designed by the research team and approved by the Institutional Review Board) was distributed to healthcare professionals who provide direct patient counseling at their practice. Invitation to participate was sent to hospitals, clinics, private pharmacies, dental clinics, and healthcare associations in the Northeast United States with a link to the questionnaire. The questionnaire consists of 18 items (4 demographics, 7 multiple choice, 2 Likert-scale, 5 open-ended). Information regarding the practice type, years of experience and type of health care setting was collected. Additionally, information on additional degrees, certificates or training the participants might have received on their own or through their institutions was also gathered.
Results:
116 participants completed the online questionnaire. The majority (62.9%) were pharmacists, followed by (22.4%) nurses, and females (69.8%) followed by males (29.3%). Practice setting varies with 54.3% came from an inpatient hospital setting, 14% at community pharmacy, 13.8% at outpatient hospital setting. Years of experience span from less than 5 years (31%) to greater than 20 years (26.7%). Although 10.3% indicated they are comfortable in communicating with patients with ASD, only 4.3% indicated they are prepared to provide patients with ASD quality care, and only 3.4% had additional training, certificates related to help them prepare to provide patients with ASD quality care. 78.8%, 86.7%, 68.1% feel that having additional training, continuing education and communication aids will improve the quality of care they provide to patients with ASD.
Conclusions:
Information from the questionnaire pointed several barriers to healthcare for patients with ASD, and the need to developing an innovative communication aid/tool as an exchange between the patient and the healthcare provider. The communication aid will be piloted in the next phase of this research, taking in consideration the social skills, and language/comprehension level of patients with ASD.