Communication partners experiences of communicating with adults with severe/profound intellectual disability through augmentative and alternative communication: A mixed methods systematic review

Abstract

People with severe/profound intellectual disability experience challenges in communicating and require their communication partners to adapt to their means of communication. Augmentative and Alternative Communication (AAC) is recognised as a potential means to meet their communication needs. Interventions need to be aimed at both the individual and their communication partners. We conducted a mixed methods systematic review of the literature to synthesise evidence on communication partners experience of communicating with adults with severe/profound intellectual disability through AAC. Eight publications met the inclusion criteria, they underwent thematic synthesis where four themes emerged. A shared commitment to communication partnership is fundamental for the effective and efficient use of AAC. However, there was a disconnect between communication partners perceptions of their roles and responsibilities. This review prompts further research to explore communication partners perceptions of their roles and responsibilities in the use of AAC with people with severe/profound intellectual disabilities.

A novel approach to prevent social isolation in people with severe disability

“…1) One panelist mentioned that "in a communication process in which one partner has a disability, both partners become communicatively disabled." It is, therefore, reasonable to conclude that it matters to reinforce this notion of shared responsibility, when it comes to effective communication, as it was theoretically acknowledged previously in this text 15,17,24 and aligned with the biopsychosocial conceptualization of disability 45 .…”

‘We became their beginning, their middle and their end’

“…Communication is a vital component in developing social skills and facilitating social interaction (Danker et al, 2023; Goldbart & Caton, 2010). It has long been established that social interaction and communication are important in fostering positive mental health and are linked to improved quality of life for people with intellectual disabilities (Beadle‐Brown et al, 2016; Felce & Perry, 1995; Schalock et al, 2008; Tough et al, 2017).…”

“…Enhancing social participation and interaction for people with severe/profound intellectual disabilities is sometimes found to be challenging due to greater impairments in adaptive and social functioning (Nagra et al, 2017) and consequently, they may be at a higher risk of social isolation (Goodwin et al, 2015; Smith et al, 2020). One reason is the nature of their communication abilities which is often characterised as ambiguous and being at the early developmental stages (Hanley et al, 2022). Second, social networks tend to be small and typically involve family members, school and healthcare staff (Kamstra et al, 2015).…”

Association of COVID-19-Related Restrictions With Changes in Functional Skills of Adults With Intellectual Disabilities in Day Programs of an Israeli Non-Profit Organization

“…About 2% of the total world population has been diagnosed with ID, and it is currently assumed by the World Health Organization (WHO) and other significant organizations to be a dynamic phenomenon. This assumption derives from the understanding that the functional abilities of an individual with ID can improve or deteriorate throughout their lifespan owing to health factors as well as external influencers, that is, personally customized programs and accessibility to health care services, as well as appropriate therapeutic support (Hanley et al, 2022).…”

“…While this assumption is well documented in childhood research and thus, children receive more adequate intensive personalized health care services (Cogswell et al, 2022), there is not enough evidence-based research regarding the benefits of such programs during adulthood, especially for those with severe/profound (S/P) ID (Baker-Ericzén et al, 2022; Singer et al, 2017). Severe neurological, communicative, physical, medical, and behavioral functioning challenges are typical for adults with ID (e.g., Ben David et al, 2022a; Doyle et al, 2021; Hanley et al, 2022), who may need different levels of assistance in their daily routines (Hilgenkamp et al, 2022). Therefore, this group requires regular reassessment and continuous adaptation of suggested therapeutic interventions that may be much more challenging at the S/P levels (Doyle et al, 2021; Wessels et al, 2022).…”