JCPSLP Vol 16 no 3 2014_FINAL_WEB

Research

Dysphagia support in disability services Stakeholder perspectives Rosie Miller, Nick Hagiliassis, Meredith Prain, and Janet Wilson

This paper describes stakeholder perspectives on good practice in dysphagia support in the disability service context. Twelve adults with dysphagia were interviewed. Twenty-four allied health professionals, sixteen family members and seventeen disability support workers (DSWs) completed a questionnaire and three focus groups for DSWs were conducted. Results indicated overwhelming support for a range of service improvements including mandatory training for support workers. Findings will be used to inform an organisational dysphagia support standard and to promote service reform. D ysphagia is a significant health issue for people with physical and intellectual disability, yet practice experience suggests a need for strengthened organisational responses to dysphagia support in the Victorian disability sector. In recognition of this need, three disability service organisations collaborated on a dysphagia quality improvement initiative. The aim of this study was to understand client, family, allied health professional (AHP) and disability support worker (DSW) perspectives as a crucial source of evidence for informing service standards for supporting adults with dysphagia. Dysphagia is associated with a number of serious health risks that include: choking (Thacker, Abdelnoor, Anderson, White, & Hollins, 2008), respiratory illness (Loughlin, 1989), aspiration pneumonia (Langmore et al., 1998) and underweight (Kennedy, McCombie, Dawes, McConnell, & Dunnigan, 1997). In the developmental disability population, dysphagia “presents variably as a combination of developmental, physiological and behavioural problems” (Sheppard, Hochman & Baer, 2014, p. 929). It is common in adults with developmental disability (Sheppard, 1991), especially among those with cerebral palsy and severe and multiple disabilities (Leslie, Crawford, & Wilkinson, 2009). Data on the prevalence of dysphagia in people with intellectual disability are scarce and those that do exist vary widely, in the range of 8.5–49% (Chadwick & Jolliffe, 2009; Sheppard & Hochman, 1989) and up to 97% in people with more severe and profound intellectual disability (Sheppard, Berman, Kvietok, & Kratchman, 1987).

Given the health risks, it is important that dysphagia be appropriately managed to optimise individuals’ health and well-being. Frontline practice experience suggests a number of barriers to the provision of quality dysphagia services in the Victorian disability sector. At present, induction training for DSWs in dysphagia and mealtime assistance is not accredited and is mandatory in very few Victorian organisations. Nutrition and swallowing risk screening and dysphagia-related incident reporting processes are not implemented systematically across the sector. Further, awareness of the signs and health impacts of dysphagia is poor among DSWs, particularly in organisations where mealtime assistance training is not mandated (Disability Dysphagia Network, 2008, pers. comm). Although there have been a number of quality improvement initiatives in the United Kingdom that have focused on dysphagia management for people with developmental disability (Hampshire Safeguarding Adults Board, 2012; National Patient Safety Agency, 2004, 2007), quality improvement projects or organisational dysphagia support standards specific to the Australian disability service context are decidedly lacking. This study is a step in addressing that gap, through elucidating client and family perspectives and expert opinion of AHPs to inform an evidence-based approach to quality dysphagia support. Method A mixed methods approach to data collection was employed to explore and provide an enriched understanding of perspectives on dysphagia-related supports. The intent was to identify, from the perspective of each of the four participant groups, what “good practice” in dysphagia services means and what are considered the most important elements to include in an organisational standard. Ethics approval was granted by two human research ethics committees. Participants Participants were recruited from the three participating organisations and comprised 12 adults with dysphagia, 16 family members, 17 DSWs and 24 AHPs. Adults with dysphagia who were able to give consent and had capacity to understand and respond to questions relating to their mealtime needs and preferences were recruited. Adults with dysphagia comprised six females and six males. Eleven had a developmental physical and intellectual disability and one had an acquired neurological condition. Family members were relatives of adult clients with dysphagia, but not

THIS ARTICLE HAS BEEN PEER- REVIEWED KEYWORDS DISABILITY DYSPHAGIA ORGANISATIONAL STANDARD

Rosie Miller (top) and Nick Hagiliassis

133

JCPSLP Volume 16, Number 3 2014

www.speechpathologyaustralia.org.au