Communicative access and decision making for people with aphasia: Implementing sustainable healthcare systems change

Abstract

Background: Communicative access to information and decision making in health care appears limited for people with aphasia in spite of research demonstrating that communicative participation can be enhanced with skilled communication partners and appropriate resources. In order to address this concern, a project was designed to target the “systems” level of health care via a multi‐faceted, team‐based intervention called the Communicate Access Improvement Project (CAIP). Aims: This project aimed to improve communicative access to information and decision making for people with aphasia within three healthcare systems (i.e., acute care, rehabilitation, long‐term care) by increasing teams members' knowledge of and skill in providing communicative supports and by facilitating the implementation of facility‐specific communicative access goals. Methods & Procedures: Three teams representing diverse disciplines participated in the project that included a 2‐day training session for each team, development of institution‐specific communicative access improvement goals and materials, and on‐site follow‐up and support from a project speech‐language pathologist. In order to determine the outcomes of team training and follow‐up, qualitative research methods were employed including observation, focus groups, and open‐ended interviews with team members. Qualitative data were collected before and after the 2‐day skills training and after a 4‐month follow‐up period. Using qualitative thematic analysis the qualitative data were analysed in order to evaluate the training process, to estimate the impact of training on team knowledge, attitude, and practice, and to identify trends, themes, emerging patterns, and primary issues associated with communicative access (Spradley, 1980 Spradley, J. P. 1980. Participant observation, New York: Holt, Rinehart & Winston. [Google Scholar] ). Outcomes & Results: After the 2‐day training, all teams demonstrated increased knowledge of methods of supporting communicative access, and improved understanding of access and inclusion for aphasia. After follow‐up, the rehabilitation and long‐term care teams achieved communicative access improvement goals and identified examples of systems changes and increased participation of people with aphasia within their programmes. They also perceived changes in team member values that supported communicative access. The acute care team reported less success in implementing goals for systems change after the 4‐month follow‐up. Barriers to and facilitators of sustainable system change were identified. Conclusions: Targeting systems‐level change appeared to be a useful approach to improving access to healthcare information and decision making for people with aphasia. The project provided insights into factors that facilitated or impeded communicative access in each healthcare setting and provided valuable information for future interventions designed to improve communicative access for people with aphasia.