Factors Affecting the Healthcare of Adults with Communication Difficulties due to Autism Spectrum Disorder and/or Intellectual and Developmental Disability

Purpose: This dissertation explores the healthcare barriers and facilitators experienced by autistic adults and adults with intellectual and developmental disabilities (IDD) who have communication difficulties (CD). Problem: Approximately 5-10% of Americans have CD, including difficulties such as stuttering, aphasia, apraxia, and other forms of language impairment(1,2). Communication difficulties are present in about 25-30% of autistic individuals and 57.9% of those with IDD, which accounts for a large and poorly studied portion of those with CD(3,4). Individuals with CD report negative healthcare experiences and decreased levels of satisfaction with healthcare providers secondary to practices such as communication solely with a patient’s supporter that disregards the patient, and/or failing to accommodate a patient’s need for alternative and augmentative communication (AAC)(5–9). This decreased satisfaction and more frequent experience of negative healthcare interactions leads to poorer perceptions of healthcare(?), less frequent use and access to primary care services, and increased use of emergency departments for non-emergent situations(5,7,8,10–13). Healthcare providers, particularly those caring for adults, similarly note an inability to accommodate AAC needs of patients with CD, as well as a lack of knowledge about these disorders(5,13,14). Objective: The overall objective of this dissertation was to investigate and develop a better understanding of the factors influencing healthcare access and effective communication in the inpatient healthcare setting for adults with IDDs/CDs. The specific aims were: Aim 1: To analyze and synthesize current knowledge about the barriers to and facilitators of access to care in adults with IDDs/CDs through the lens of Levesque et al.’s conceptual framework of access to healthcare(15). Aim 2: To examine and appraise the research literature on interventions designed to improve health communication for patients with IDDs/CDs through the lens of the FR2A4ME2 framework(13). Aim 3: To gain insight into providers’ experiences, needs, and perspectives regarding caring for the adult IDD/CD population. Aim 3a. To measure hospital providers’ perceptions of self-efficacy (SE) using the Provider Self-Efficacy Scale for Communicating with Adults with CDs (PSESCACD) instrument through on online survey. Aim 3b. To explore, through qualitative interviews, the actual and perceived barriers to and facilitators of implementing elements of the FR2A4ME2 model of communication in providing care for adult patients with CDs through the lens of the Social Ecological Model. Design: An integrative review was conducted to evaluate current knowledge of the barriers to and facilitators of healthcare access in adults with IDD and CD using Levesque et al.’s conceptual framework of access to care (Aim 1). Findings from this review informed the framework and design of the dissertation study. A scoping review of current healthcare interventions for patients with CD was conducted (Aim 2). A multiple methods design was used for the dissertation study (Aim 3), informed by the Social Ecological Model (SEM) and the FR2A4ME2 framework which were applied to analyze the barriers and facilitators to care as identified by in-hospital healthcare providers(13,16,17). The Provider Self Efficacy Scale on Caring for Adults with Communication Disorders (PSESCACD) was administered through an online survey to measure provider reported SE as well as providers’ perceptions of SE in using specific communication strategies when communicating with adult patients with CD. Methods of qualitative description informed the conduct and analysis of key informant interviews with providers to gain insight to their perceptions of factor influencing effective communication(18). Results: A multitude of barriers and facilitators to healthcare access were identified using Levesque et al.’s framework(15). Ineffective communication was found to be a substantial barrier to care for adults with IDD and/or ASD, as well as previous negative healthcare experiences, lack of provider training and competency, and a tendency of providers to rely on supporters. Current inpatient healthcare interventions were found to focus specifically on adults with acquired CD, with the greatest impact on improving knowledge, skills, and the ability of healthcare providers to utilize some elements of the FR2A4ME2 framework with patients and supporters. The findings of the 19 provider interviews reflected and amplified the barriers and facilitators to healthcare access identified in manuscripts one and two. Both the integrative and scoping reviews noted a lack of education among adult healthcare providers, as well as a lack of available alternative communication resources, and both were noted as barriers by healthcare providers from various health systems of varying types of institutions in the dissertation study. While inpatient interventions focused on addressing some of these barriers, such as lack of staff knowledge and education, barriers such as a lack of resources remain predominantly unaddressed. Conclusions: Findings from this dissertation can be used to guide the development of future studies on interventions for adults with non-acquired CD, a new model to guide communication of healthcare providers with individuals with CD, and changes within organizations related to resource availability, current systems of care, and continuing education. They underscore the need for further intervention development and implementation studies with this patient population. While the findings of the study are congruent with current literature, they expand upon them by exploring the interplay of factors across the SEM and impact of use of elements of the FR2A4ME2 framework