JCPSLP Vol 17 No 3 2015

Fresh science and pioneering practice

Babies with feeding difficulties Mothers’ perceptions of hospital discharge, transition home, and the role of speech-language pathology Katie L. Ilich and Deborah Hersh

Little has been published on the experiences of parents of children with feeding and swallowing problems, or on how these parents manage at the time of their children’s discharge from hospital. This pilot study provides initial information on the perceptions of mothers of babies (outside the neonatal period but before 12 months old) with feeding difficulties, regarding the role of speech- language pathology (SLP) at discharge from hospital and during the transition home. Four mothers were interviewed at discharge from hospital and two of them were interviewed again once home up to a month later. Participants had a strong desire to go home but felt anxious about managing potentially unpredictable feeding behaviours or changing circumstances. They wanted a clear plan, verbal and written information, involvement in decision-making, and support around the time of discharge and beyond. The research highlights the importance of focusing beyond assessment and intervention for these babies and families to consider how discharge and transition home can be best facilitated and supported. P arents who have babies with feeding difficulties experience considerable stress and carer burden (Adams, Gordon & Spangler, 1999; Graungaard & Skov, 2006; Hewetson & Singh, 2009; Stoner et al. 2006). This parental stress is particularly high when these babies require non-oral feeding (Judson, 2004; Spalding & McKeever, 1998; Wilken, 2012) and are hospitalised (Fowlie & McHaffie, 2004; Garro, Thurman, Kerwin, & Ducette, 2005). Hewetson and Singh (2009) reported that mothers caring for children with feeding issues found the difference between expectations and reality caused them to question their mothering identity and to experience feelings of failure and inadequacy. The loss of their ideal expectations and bonding opportunities were compounded by feeling physically and emotionally exhausted from coping with the issues surrounding feeding their children.

There are a number of disorders linked to swallowing and feeding difficulties in infants, associated with structural, neurological, cardiorespiratory and inflammatory issues (Miller, 2011). These include, but are not limited to, cleft lip and palate, vocal fold paralysis, cerebral palsy, prematurity, cardiac anomalies, and inflammation of the pharynx and larynx. Between 3% and 10% of all children experience some form of feeding disorder (Manikam & Perman, 2000). In 3% of all cases, hospitalisation is required to treat and manage the condition (Garro et al., 2005; Kerwin, 1999) because of clear links between feeding disorders, safe swallowing, growth and development (Miller, 2011). Despite recognition of the impact that having a baby or child in hospital with a feeding difficulty can have on parents, there has been relatively little research examining parental experiences at, and around the time of, discharge from hospital with these children. Few studies have considered how parents of hospitalised children in general experience the transition from hospital to home (Murdoch & Franck, 2012; Rehm & Bisgaard, 2008), but more has been written on discharge from the neonatal intensive care unit (NICU; for example, Bissell & Long, 2003; Mancini & While, 2001; Sneath, 2009). Despite awareness that this transition is a time of vulnerability and anxiety for parents, during which they need to demonstrate sufficient understanding and skills in managing their child’s condition before returning home, determining parents’ readiness for discharge can be complex (Bernstein et al., 2002; Weiss et al., 2008). Feeding issues are often at the forefront of these considerations, particularly if non-oral feeding is required. Hewetson and Singh (2009) suggested that parents often feel uninformed about the reasons for, and management of, tube feeding, and Adams, Gordon, and Spangler (1999) found that parents of tube-fed babies are particularly stressed. In addition, the results of Mathisen, Carey, and O’Brien’s (2012) research suggest that parents of newborns with feeding issues may experience difficulty with role negotiation with health professionals while their child is in hospital. Parents also report receiving differing information from health professionals, which can negatively impact on their understanding and levels of stress (Adams, Gordon, & Spangler, 1999; Hoddinott & Pill, 2000). This paper is particularly concerned with mothers’ perceptions at discharge from hospital within the first year, but beyond the neonatal period, and focuses on the role of speech-language pathology (SLP) in that transition. Due to the often complex and multifaceted nature of swallowing and feeding conditions in newborns and infants, a range

KEYWORDS DISCHARGE PAEDIATRIC FEEDING

DIFFICULTY PARENTAL PERCEPTIONS SPEECH- LANGUAGE PATHOLOGY TRANSITION HOME

THIS ARTICLE HAS BEEN PEER- REVIEWED

Katie L. Ilich (top) and Deborah Hersh

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JCPSLP Volume 17, Number 3 2015

Journal of Clinical Practice in Speech-Language Pathology