JCPSLP Vol 17 No 3 2015

Analysis Interviews were audio recorded and transcribed verbatim by the first author and the emailed exchanges were also collected. Thematic analysis sorted recurring issues and patterns into themes and subthemes. The first author recorded feelings to maintain reflexivity, consciously acknowledging personal biases (Angen, 2000; Liamputtong, 2009; Ryan, Coughlan, & Cronin, 2009). The credibility and rigour of this study was addressed through the implementation of member checking, offered to all participants, although only one participant chose to complete member checking (Curtin & Fossey, 2007). To achieve consistency and neutrality, an audit trail was kept which involved the researcher keeping thorough notes of data, interpretation and changes to research plans, audio recordings, and interview transcripts. Rationales for decisions made during the study were documented to ensure the confirmability of results and the overall credibility of the research (Lincoln & Guba, 1985). Both authors reviewed transcripts and coding, with particular attention to triangulation across conditions and time (Denzin & Lincoln, 2005). Results Through the six points of contact made with participants, three main themes emerged around the issues of transition and discharge home. These were maternal emotions, home and family life, and the role of SLP. These three themes and their subthemes are shown in Figure 1. In relation to maternal emotions, there were feelings of stress and anxiety associated with hospital discharge. Confidence or erosion of confidence was a recurring subtheme closely associated with anxiety about managing the baby’s broader health issues, provision of information, and coping with unpredictable feeding. For those who saw positive changes and progress with feeding, going home was affirming and enhanced a sense of pride, self-worth, and achievement as well as an increased sense of control over the environment. The mother with a tube-fed baby at the time of discharge presented as more stressed and uncertain at home than the mothers of orally fed babies. Life at home was also a key theme involving, for example, responsibilities to other children, the aim for a normal routine, and having other family members to call on. Participants felt empowered by being able to educate family members regarding issues such as tube feeding. Once home, questions arose, particularly around the baby’s development, timelines for achieving goals, and how SLP might help with these issues. In relation to the third theme of the SLP role, the four mothers in this study appreciated SLPs’ depth of knowledge on practical issues, for example, about choices around of bottles or teats, what kind of foods to try, or how to encourage their child to try something new. They often had queries or needed help to make sense of information that they had already been given. They wanted to discuss issues during regular visits on the ward and they appreciated getting to know the SLP and seeing the SLP get to know their child. However, initially, mothers were not always aware of the role and responsibilities of SLPs with regard to feeding. Tia was “quite shocked… to find out that you were under speech [she and her son would receive support from a speech-language pathologist], ’cause I said to them that he doesn’t talk yet”. This highlights the importance of clear introductions in an environment where many professionals come into contact with parents on the wards. Stories which emerged from the interviews help illustrate some of these themes and subthemes. An example of the

importance of good planning and communication can be found in Mel’s report of an incident where she perceived mixed messages from the nursing staff and Feeding Team (SLP, dietetics, and occupational therapy). Her baby had been recommended by the SLP and dietician to have a nasogastric tube placed but, over the weekend (when the Feeding Team were not present), he pulled it out. The nursing staff assured her that he did not need it and it was not reinserted. While there may have been good reasons for the clinical decisions made, Mel’s view was that the situation was unclear: “it does get a bit confusing when that was the plan, and then the plan’s now changed”. She suggested: “I think they should all communicate a bit more together, maybe, which would make it easier on the parents”. A second example illustrates the vulnerable position of parents at discharge. Charlotte felt she had inadequate information: “It was unfortunate that the SLP was only able to observe one feed… His feeding is very erratic and we don’t know why as yet”. She felt underprepared in managing her baby’s nasogastric tube at discharge. She wrote: Things I have not been told include the long term impact of having a tube, how long they will leave the tube in, if the tube will affect his speech, if the tube is in long term are there other options that are not so visual, how the tube will impact on the introduction of solids. I have also not been given much information on how to gravity feed and ways to make tube feeding more easy in a busy household. In her second (emailed) interview, Charlotte reported turning to the internet to get information: “Luckily there are a lot of online forums and Facebook pages about tube feeding that I have been able to access for support”. While such sources of information may be helpful, it is important that SLPs are aware of parents’ ongoing need for support, and remain accessible sources of reliable and evidence- based information both within hospital and after discharge. Discussion The aim of this study was to gain an initial understanding of mothers’ experiences of discharge from hospital to home with a baby with feeding issues, and the role of SLP in that discharge and transition. There is little published research with this group of clients and, following discharge, there are limited opportunities for them to share their experiences with their SLPs (Dodrill, McMahon, Donovan, & Cleghorn, 2008). The results of this study confirm VanDahm’s (2010) position that discharge from hospital does not necessarily signify the end of the need for SLP support and involvement, and that a smooth and well communicated transition to outpatient or community services may be necessary. In line with the findings of Fowlie and McHaffie (2004), while individuals were glad to be home, frustration and anxiety increased over time if follow-up supports were not available. The mention of the internet as an important information and support source is not surprising but it does show that the SLP has a role in providing ongoing, reliable, and high-quality information for families following discharge. The desire for clear and consistent information found in this study was noted in previous research (e.g., Adams, Gordon, & Spangler, 1999; Hoddinott & Pill, 2000) which found that inconsistent advice from health professionals concerning the management of a baby with feeding issues is not unusual, especially when tube feeding is involved.

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JCPSLP Volume 17, Number 3 2015

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