JCPSLP Vol 17 No 3 2015

of health disciplines are typically involved in the health care team. This team includes SLPs who are experts in feeding and swallowing disorders, and have a role in assessment, treatment, and ongoing support of these children and their families (Bell & Sheckman Alper, 2007; Carr Swift & Scholten, 2009; Cichero & Murdoch, 2006; Mathisen et al., 2012; Miller, 2011). Indeed, the adoption of a family- centred approach to the management and care of babies and children with feeding difficulties is well accepted as good practice in SLP (Mathisen, 2009). However, relatively little research has, as yet, been carried out in relation to the families of this group of children. As Mathisen wrote: “Surprisingly, the particular experiences and concerns of families of infants and children with dysphagia have not been thoroughly investigated or reported” (p. 253). Indeed, even less research is available exploring the experiences of parents of this group of children at discharge from hospital or transition between services. An exception is a qualitative study of the experiences of nine parents of children with feeding difficulties in a neonatal unit (Carr Swift & Scholten, 2009). While the participants in this study talked about a range of issues within the unit, including feeding interventions, bonding between parents and baby, and family strain related to juggling commitments in and out of hospital, a key finding was the strong desire to get home. Discharge decisions were closely related to feeding and gaining weight: “the feeding interaction became focussed on intake, to get the baby home” (p. 253) which led to considerable parental frustration. This research hinted at the centrality of discharge issues for this group of parents but it did not explore the role of SLP. Conversely, Mathisen and colleagues (2012) presented evidence for SLPs to have a core role in neonatal intensive care units but do not discuss this in relation to discharge issues. In fact, to the authors’ knowledge, no studies have been conducted to examine parental experiences and the role of SLP leading up to, and at the time of, discharge for babies or children with feeding difficulties. This gap exists not because this issue is not important, but perhaps because the SLP role is subsumed into that of the team, or because SLP research generally has tended to focus attention on assessment and intervention and give less recognition to discharge or transition (Hersh, 2010). However, a recent clinical report (VanDahm, 2010) highlighted the roles of both acute and community SLPs in assisting families of these children and specifically noted the importance of the SLP in the transition from hospital to home for these children and families: “SLPs play a critical role in working with these children and their families before and after discharge from acute care as they support the

family’s adjustment, implement recommendations, and monitor the child’s progress” (p. 13). Therefore, this small study aimed to gain an initial understanding of parental (specifically mothers’) experiences of discharge from hospital, transition from hospital to home with a baby with feeding issues, and the role of SLP in that discharge and transition. Method This research study used thematic analysis, which allowed a detailed exploration of individuals’ first-hand experiences (Creswell, 2007; Liamputtong, 2009). In-depth, semi- structured interviews (Corbin & Morse, 2003) were used with three of the participants and two email-based interviews with a fourth participant. The interviews explored how mothers experienced the time leading up to their children’s hospital discharge, the transition home, and the role of SLP. Participants Four mothers of babies with feeding issues were recruited at a children’s hospital in Western Australia. Three were biological mothers and one was a foster mother. These participants were identified by their SLPs, and were then invited to participate in the study. To be eligible to participate, the baby had to (a) be under one year of age, but beyond the neonatal period; (b) have feeding issues, and (c) be admitted as an inpatient. However, it was not a requirement that the feeding issues were the cause of the hospitalisation. Participants were offered the opportunity for an interview within a few days before discharge and another up to a month post discharge. However, two mothers (Mel and Renee) elected for a single interview at discharge, citing time constraints, and another (Charlotte) decided to be interviewed via email over two occasions. The research study received approval from both the Edith Cowan University Human Research Ethics Committee and the Princess Margaret Hospital. The details of the participants are provided in Table 1. All names used are pseudonyms. Conduct of the research During the data collection period of three months, six points of contact were made with the four participants – four interviews were completed face-to-face, and two by email. The topic guide for the first interview covered feelings around discharge readiness, anticipation of going home, and involvement of SLP including its influence on management of the child’s feeding. The second interview involved revisiting the same issues but from a post- discharge perspective.

Table 1. A summary of participants’ social and medical circumstances

Baby’s siblings

Baby’s medical issue

Hospital stay length

Primary feeding method

Mother

Marital status Baby’s gender & age at interview

Tia (28 years) Mel (29 years) Renee (26 years) Charlotte (27 years)

Married

M 10 months

1 (twin)

Tetralogy of fallot and cardiac surgery

2 months (in and out)

Transition from nasogastric tube to bottle

Married (foster mother)

M 7 months

3 (foster children) No other children

Foetal alcohol syndrome

1 week

Bottle-feeding

Married

F 10 months

Cardiomyopathy

1 month

Bottle-feeding

Married

M 5 months

2

Prematurity, atrial septal defect

2 weeks

Nasogastric tube

115

JCPSLP Volume 17, Number 3 2015

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