JCPSLP Vol 16 no 3 2014_FINAL_WEB

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?

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JCPSLP Volume 16, Number 3 2014

Journal of Clinical Practice in Speech-Language Pathology