JCPSLP Vol 22 No 2 2020

Learning from our clients

Working with toddlers with cleft palate Learning from clients and families Anna Cronin, Sarah Verdon, and Sharynne McLeod

Toddlers with cleft lip and palate (CP+L) often receive speech-language pathology intervention as part of a larger intervention program. These programs are often aligned with a medical model since specialist interdisciplinary cleft team care is provided through hospital settings. However, there are many benefits of family-centred practice for speech-language pathology intervention for these children and their families. This clinical insights paper is intended for SLPs new to working with young children with cleft palate and aims to translate findings into practice from the international multiphase Toddlers with Cleft Palate Study that involved (a) interviews with international specialists, (b) speech and language data from toddlers with cleft palate, and (c) an ethnographic study to outline principles of family- and child-centred practice for toddlers with cleft palate and their families, so that speech-language pathologists (SLPs) may learn from and better understand the needs of these clients. Clinical insights from this study support SLPs using family-centred practice, incorporating an ethnographic approach to assessment and relationship building, and considering the contexts in which young children with CP±L participate in, to best learn from the clients and their families. C left palate with or without cleft lip (CP±L) occurs when the development of the palate is interrupted and the segments of the face do not fuse correctly (Cronin & McLeod, 2019; Peterson-Falzone, Hardin-Jones, & Karnell, 2010). The presence of a cleft palate may mean the oral and nasal cavities are not properly separated, which has consequences for children’s speech, hearing and feeding. Velopharyngeal inadequacy (VPI) is an umbrella term for velopharyngeal disorders. VPI refers to oronasal coupling, or inadequate velopharyngeal closure (Peterson- Falzone et al., 2010). VPI is characterised by nasal emission and/or nasal turbulence accompanying oral pressure

sounds, hypernasal resonance, and/or weak or nasalised oral pressure sounds. If there is VPI, children may also have nasal regurgitation. Children’s middle ear function may also be impacted if they have CP±L, as the muscles responsible for opening the eustachian tube are affected by the cleft, meaning it does not drain properly (Peterson-Falzone et al., 2010). Specialised equipment is required to support babies’ feeding prior to cleft palate repair. Toddlers (i.e., 2- to 4-year-olds) with CP±L are at risk of delays or disorders in their speech and language development (Scherer, D’Antonio, & McGahey, 2008). Children with CP±L may also have VPI. Many children with CP±L may have complex speech characteristics secondary to their condition. However, some children with CP±L require only minimal intervention (Hardin-Jones & Jones, 2005). Children with CP±L can require multiple surgeries, depending on their cleft type and ear health (refer to Table 1). As toddlers with CP±L are at increased risk of speech and language delay (e.g., Chapman, 2004; Scherer et al., 2013), both language and speech assessment is recommended (Scherer, 2017). Assessment with young children with CP±L has been described as needing several components: a speech sample, standardised language assessment and/or parent questionnaire, stimulability/speech sound inventory, and potentially a measure of general development (e.g., Bayley-III Screener; e.g., Scherer, 2017). Specific assessments such as the Profiles of Early Expressive Phonology (PEEPS) have been developed for collecting speech samples with young children (Stoel-Gammon & Williams, 2013). Other papers have supported the need for the children’s speech to be evaluated in the context of the whole child, and taking a transdisciplinary approach to assessment (e.g., Scherer & Louw, 2011). The aim of the Toddlers with Cleft Palate Study (Cronin, 2020) was to firstly describe current SLP practice with young children with CP±L and then investigate families’ experiences of these services and their experiences of raising and supporting a child with CP±L. This paper aims to translate these findings to clinical practice. To transition from focusing on the medical model, the Toddlers with Cleft Palate Study used a holistic, family-centred approach to research with a desire to listen to and learn from toddlers with CP±L and those around them (i.e., immediate families, extended families, significant others, and educators). Three theoretical approaches were applied: the International Classification of Functioning, Disability, and Health: Children and Youth version (ICF-CY; World Health Organization, 2007), family-centred practice (e.g., Shelton et al., 1987) and the Convention on

KEYWORDS CLEFT PALATE FAMILY-

CENTRED PRACTICE SPEECH YOUNG CHILDREN

THIS ARTICLE HAS BEEN PEER- REVIEWED

Anna Cronin (top), Sarah Verdon (centre) and Sharynne McLeod

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JCPSLP Volume 22, Number 2 2020

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