Participation, Inclusion, Quality of Life and Dysphagia

Rapid Review of Speech Pathology Interventions to Improve Participation, Inclusion and Quality of Life for People with Dysphagia

The full text of this review is available here:
Bryant and Hemsley 2018 Evidence Summary Dysphagia Mealtimes Participation UTS 2018


Dysphagia (difficulty swallowing) is associated with a wide range of limitations and restrictions in a person’s activities and participation (Nund et al., 2014; O’Halloran & Larkins, 2008; Threats, 2007). However, the main focus of research on dysphagia in individuals with either acquired or lifelong disability has to date focused upon impacts on respiratory health, nutritional health, airway protection and risk of choking, and preventable death. Little is known about whether or how interventions to address these health impacts of dysphagia impact on the lives of individuals with disability and dysphagia, and there is little empirical evidence to guide policy frameworks for funding disability services in relation to dysphagia and mealtimes. Therefore, the aim of this review was to determine: (i) how dysphagia impacts on a child or adult with disability and dysphagia’s participation and inclusion, wellbeing, or quality of life; and (ii) the nature of any effects or impacts of dysphagia interventions or other interventions addressing mealtime difficulties, on participation and inclusion, wellbeing, or quality of life, in children or adults with acquired or lifelong disability and dysphagia.

In April 2018, we searched 5 scientific databases and Google Scholar for full papers in English that related to participation, inclusion, and quality of life for children or adults with disability and dysphagia. Any form of disability (acquired, lifelong) including autism spectrum disorder (ASD) was included and no criteria of quality was applied. We sought information on the impact of dysphagia on any aspect of quality of life, wellbeing, participation, or inclusion (i.e., not death, respiratory health, or nutritional health) and on any outcomes of interventions aimed at improving any aspect of dysphagia or mealtimes, on those outcomes.
Initially, we focused on searching for literature in the field of speech pathology and located 1157 potentially relevant papers. When few of these papers provided relevant information (n = 14, or 1.3%) we expanded the search to include interventions for ‘fussy eaters’ or individuals with oral hypersensitivities affecting mealtimes, and to other related disciplines involved in mealtime, namely occupational therapy (e.g., mealtime roles, equipment, mealtime assistance), physiotherapy (e.g., mealtime positioning, respiratory health), and education or psychology (e.g., mealtime behaviours). This search located a further 3422 potentially relevant studies, of which only 5 (0.1%) provided relevant information on quality of life, participation, or inclusion outcomes. Thus, in total, from 4579 studies, less than 0.5% provided any outcomes relevant to quality of life, mealtime participation, or inclusion, and the most relevant studies came from the speech pathology literature.

Thus, there is little research evidence yet in the peer reviewed literature on the impacts of dysphagia, or dysphagia-related or mealtime-related interventions, on participation or inclusion, quality of life, or wellbeing in individuals with either acquired or lifelong disability. Most of the 20 studies located related to adults with acquired conditions and did not focus upon mealtime participation and inclusion specifically, but rather more broadly addressed quality of life as measured using tools such as the SWAL-QOL (McHorney et al., 2002), an assessment developed for use with people with stroke. There were few qualitative studies appropriate to understanding the subjective human experiences and lived experience of both dysphagia and its impacts. Studies using the SWAL-QOL (Rogus-Pulia et al., 2016; Stegemoller, Hibbing, Radig, & Wingate, 2017; Zhang et al., 2016) did not capture the detail in outcomes reported in qualitative research involving in-depth interviews with the parents of children with autism (Binnendyk & Lucyshyn, 2009; Cheremshynski, Lucyshyn, & Olson, 2013; Lucyshyn et al., 2007; Muldoon & Cosbey, 2018) and adults with intellectual and developmental disability (Chadwick, Jolliffe, & Goldbart, 2003). The results of this review suggest that foundational qualitative studies, first developing theory on the impact of dysphagia on mealtime participation and inclusion, wellbeing, and quality of life in individuals with disability and dysphagia, and a full appreciation of the experience, are needed to inform further research guiding policies and practice in the management of dysphagia.

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