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JCPSLP
Volume 16, Number 3 2014
Journal of Clinical Practice in Speech-Language Pathology
Data analysis
Quantitative data were entered into MSExcel™ and pivot
tables created. To determine if there were significant
differences in reporting between groups, a Kruskal-Wallis
test was performed using SPSS. For qualitative data, two
researchers conducted independent thematic analyses of
interview and focus group data, then, through discussion,
came to a consensus on the final interpretation. An
inductive approach to thematic analysis was employed as
informed by Braun and Clarke (2006).
Results
Results are presented for each of the stakeholder groups
followed by findings of key similarities and differences in
perspectives across these groups. For DSWs, survey and
focus group data are combined. For adults with disabilities,
findings from individual interviews are reported, while for
families and AHPs survey data are reported.
Disability support worker perspectives
Seven major themes emerged from the focus groups with
DSWs: peer support, information and training,
collaboration, staffing, documentation, complexity and
attitudes, with each major theme incorporating a number of
subthemes. Table 3 reports the thematic categorisation of
focus group data.
It was evident that DSWs are presented with a high
degree of complexity when supporting adults with
dysphagia, characterised by challenges in understanding
the needs of people with profound communication
impairments and the dilemma in managing risk in individual
choice. On the latter observation, one group of DSWs gave
examples of people with dysphagia making food choices
that put them at risk of asphyxiation. Informants reported
that supported decision-making processes and accessible
documentation were valuable in helping individuals
understand the risks associated with their choices. The
practical and ethical dilemma in supporting individuals to
enact choices that imply risk is reflected in the following
DSW statement:
I’m not telling you you can’t eat minties, I’m just telling
you I’m not going to be the one to put it in your mouth
… I would never sleep at night thinking I was the one
who put the mintie in your mouth that killed you.
DSWs in two of the three focus groups discussed
challenges they experienced when supervising students
and casual staff, and their concerns for client safety
and continuity of care. DSWs also described their role
in identifying functional changes in clients’ eating and
swallowing abilities and liaising with speech pathologists in
these circumstances.
Peer support emerged as a major theme. Informants
identified experienced DSWs as an important source
of information. DSWs in two of the focus groups also
discussed the value of responsive and on-site speech
pathology.
The importance of effective communication between day
and residential services was highlighted, although some
different perspectives emerged. One focus group described
communication between services as a significant barrier
to meeting the needs of individuals with dysphagia. By
contrast, DSWs in another focus group acknowledged a
responsibility at both a team and personal level to improve
communication with other services involved in supporting
the client. Overall, collaboration was highly valued by DSWs
necessarily of those adults who were participants in the
present study. DSWs all worked in day services and all but
one were permanently employed. AHPs were employed in
adult services.
Recruitment
Participants were recruited indirectly via service managers
from the three participating organisations. Service
managers distributed research packs to eligible adult
clients, family members and DSWs. A hard-copy
questionnaire was included in the research pack for family
members. Managers also forwarded a recruitment email
and on-line survey to AHPs employed in the organisations’
adult services. Written consent was used for adults with
dysphagia and DSWs.
Data collection
There were three main sources of data collection: 1) a
questionnaire administered to families, DSWs and AHPs, 2)
focus groups attended by DSWs, and 3) individual,
semi-structured interviews with adults with dysphagia.
Researchers developed a 20-item questionnaire reflecting
key components in dysphagia management including: staff
training, documentation, meal-assistance, collaboration,
client choice, screening and monitoring, incident reporting
and policy (see Table 4). Questionnaire items were informed
by relevant literature (Stewart, 2003) and the authors’
clinical experience in service provision to adults with
dysphagia. Each item was rated on a 4-point scale from
unimportant
to
extremely important
. A hard-copy survey in
easy English was provided to families and DSWs while a
parallel on-line version was made available to AHPs.
DSWs participated in focus groups to allow for in-
depth exploration of group perspectives and concerns.
DSW viewpoints are particularly underrepresented in
disability research hence the need to attend to this group
in particular. Three focus groups were held, one at each of
the organisations (see Table 1 for focus group questions).
Focus groups were audio-taped and transcribed.
Adults with dysphagia participated in individual interviews
based on the questions reported in Table 2. This allowed for
focused, conversational communication.
Meredith Prain
(top), and Janet
Wilson
Table 1. Focus group questions
Can you tell me about your experiences assisting people who have
difficulties with eating and swallowing?
What are the most important things you need to support people who
have difficulties with eating and swallowing?
Do you have any suggestions for how we could make services better
for people with eating and swallowing impairments?
Table 2. Interview questions
When you have something to eat or drink, do you need someone to
assist you?
How do you like to be assisted at mealtimes? What helps?
How do you like your mealtimes to be?
Is there anything you don’t like or that doesn’t help?
Is there anything that people at X could do to make your mealtimes
better?
Is there anything that people at X could do to make mealtimes better
for other people who have eating and swallowing problems?
