Examining the Development and Utilization of Infection Control Policies to Safely Support Adults with Neurodevelopmental Disabilities in Congregate Living Settings During COVID-19

ABSTRACT

Background and Objective(s) Congregate living settings supporting individuals with neurodevelopmental disabilities (NDD) have experienced unprecedented challenges during the COVID-19 pandemic. Infection control policies in these living settings can impact on health and well-being and occupational engagement of individuals with NDD. This study aimed to explore the development and utilization of infection control policies in congregate living settings supporting individuals living with NDD during the COVID-19 pandemic. Study Design: Qualitative research. Study Participants & Setting: This qualitative study interviewed senior administrative personnel from agencies assisting adults living with NDD residing in Developmental Services community-based congregate living settings in Ontario, Canada. Materials/Methods: A qualitative approach using Interpretive Description guided this study. Data were gathered from participants using a one-hour interview conducted online. Thematic analysis was used to analyze the data. Result(s) Semi-structured interviews were conducted with 30 individuals from 22 agencies. Participating agencies were diverse in size and geographic location. Three categories emerged through thematic analysis -Development of Infection Control Policies, Implementation of Infection Control Policies, and Impact of Infection Control Policies. Each category yielded subsequent themes. The two themes from the Development of Infection Control Policies category included New Responsibilities and Interpreting the Grey Areas, and Feeling Disconnected and Forgotten. Four themes within Implementation of Infection Control Policies included, It's Their Home (i.e., balancing public health guidance and organizational values), Finding Equipment and Resources, Information Overload (i.e., challenges with policy implementation), and Emerging Vaccination (i.e., navigating vaccination for clients and staff). The category of Impact of Infection Control Policies had one theme -Fatigue and Burnout, capturing the impact of policies on stakeholders in congregate living settings. Conclusions/Significance: Agencies experienced difficulties developing and implementing infection control policies, adversely impacting their clients, families of clients and staff. Public health guidance should be tailored to congregate settings supporting those living with NDD instead of a universal approach for all congregate settings, because many individuals living with childhood disabilities will require support from living settings of the congregate nature. Providing public health with an understanding of developmental disabilities and the supports required by individuals living in these settings can aid in the implementation of supports that better align with the human rights of individuals living with disabilities into adulthood. To address this knowledge gap, rehabilitation professionals can use a life course focus to increase knowledge and provide insights within public health institutions to enhance community capacity to support those living with NDD.