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Fresh science and pioneering practice
114
JCPSLP
Volume 17, Number 3 2015
Journal of Clinical Practice in Speech-Language Pathology
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
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
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.
Babies with feeding
difficulties
Mothers’ perceptions of hospital discharge, transition
home, and the role of speech-language pathology
Katie L. Ilich and Deborah Hersh