Research
JCPSLP
Volume 16, Number 3 2014
133
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 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).
Dysphagia support in
disability services
Stakeholder perspectives
Rosie Miller, Nick Hagiliassis, Meredith Prain, and Janet Wilson
Rosie Miller
(top) and Nick
Hagiliassis
THIS ARTICLE
HAS BEEN
PEER-
REVIEWED
KEYWORDS
DISABILITY
DYSPHAGIA
ORGANISATIONAL
STANDARD
