JCPSLP Vol 22 No 2 2020

SLP considerations A strength-based approach Drawing on children’s strengths is essential when planning intervention. Their strengths may include enjoying movement and going outside, having supportive extended families, or using particular consonants in their inventories. For example, to capitalise on children’s strengths, sounds may be chosen as targets that are outside of the typical developmental sequence but are stimulable even in only one context. One mother reported the importance of a strengths-based approach in intervention and the success they had had with their OT and SLP working together: “Play-based activities definitely are the most successful in our circumstances”. Listening to clients and thinking holistically Moving beyond the children’s body structures and functions (e.g., surgical repair of the cleft, production of oral pressure sounds) requires consideration of the children’s activities, participation, and environmental factors (see Box 1). This has not necessarily been routinely adhered to in the specialised field of CP±L, where SLPs’ focus tends to be on children’s speech sounds and velopharyngeal function (e.g., Cronin et al., 2020a). Using measures such as the SPAA-C or FOCUS can provide insights into children’s activities and participation, and support discussion around goal-setting with families. Thinking holistically requires other considerations like geography, given the centralised nature of interdisciplinary cleft team care (Cronin, Verdon et al., 2020). Telehealth could be an option for sharing knowledge and information between SLPs in the cleft team and local SLPs, or there may need to be consideration of children’s upcoming surgeries (e.g., insertion of grommets, primary repair, revisions). Evaluation of a family-centred approach for children with CP±L The Toddlers with Cleft Palate Study has several clinical implications (Box 2). Families provided many insights about their children’s strengths and difficulties that emerged after spending time with them and talking with them that went beyond the information that could be collected from standardised measures. Building a strong relationship to foster trust and gather information was vital in informing practice and enhanced by taking an ethnographic approach. Taking the role of a participant-observer is a fundamental component of ethnography and is familiar for many SLPs (Verdon, 2014). Being a participant-observer is particularly important when working with toddlers, in clinical practice and not just research. There is power and value in observation with toddlers who may feel reluctant to interact directly with new adults. SLPs have a lot of knowledge about child development, and speech and language development specifically, and reflecting on those observations and findings and identifying concerns is important (i.e., don’t focus just on the cleft). Although this is a specialised area of practice, skills generalist SLPs already possess, from working with young children with communication disorders, are transferrable (Appendix A). Specific knowledge about cleft speech characteristics and velopharyngeal function can be gathered from the children’s cleft teams. For those SLPs working regularly with toddlers with CP±L, much can be learnt from their clients. Considering children’s and families’ priorities holistically

professionals in this specialised field that families have not always been listened to in decision-making and although this has been unintentional, or is perhaps inherent in the medical model, it has occurred for some time (Cronin et al., 2020a). Families of children with CP±L have indicated that in the early years of their children’s lives, it can busy and/or stressful as they are grappling with the initial diagnosis, then managing multiple surgeries and appointments, and advocating for their children to ensure they receive the best possible coordinated care (e.g., Cronin, Verdon, et al., 2020) (Box 1). One family asked SLPs to “be mindful of other challenges the child and family may be facing, in our instance hearing loss and behavioural challenges. These have an impact with progress, willingness to cooperate and mental load for parent”. Some of the families in the Toddlers with Cleft Palate Study found the circumstances around their children’s births, receiving the diagnosis of CP±L and early interventions traumatic (Cronin, Verdon et al., 2020). The challenges they described support the need for SLPs to have the ability to link families in with psychology services if warranted (e.g., Stock et al., 2020a). This history of early challenges also highlights the importance of family-centred practice to be respectful of families’ wishes. Families also highlighted the high level of knowledge within specialist teams, and the paucity of knowledge among non-specialist health professionals, such as generalist SLPs. Talking with families also highlighted the range of extended family members wanting to learn more about the children’s condition and be involved in their care. For these reasons, a different approach to the medical model that prioritises families’ perspectives is key to effective engagement of children with CP±L and their families in speech-language pathology. Listening to families about their day-to-day lives and routines provides important insights about challenges and successes. Mealtimes can be stressful for families of toddlers with CP±L if they are fussy eaters or grazing, avoiding sitting for meals, or have limited repertoires) (Cronin, Verdon et al., 2020). Fussy eating or problem feeding may need to be a focus of intervention or a reason to refer on. Extended family Many extended family members are involved in the lives of children with CP±L (Cronin, Verdon et al., 2020). Aunts and grandparents often were involved in the children’s lives (e.g., providing childcare particularly since centre-based care was harder to obtain for families), had close relationships with them, and wanted to know more about the children’s speech and the impact of the cleft long term (Cronin, Verdon et al., 2020). Extended family members can act as more agents of therapy to practise strategies that are decided upon in intervention. The need to engage families in intervention for toddlers with CP±L was also highlighted by DeLuca (2020). Educators Generalist SLPs may have the opportunity to work with educators in early childhood education and care centres supporting communication, facilitating generalisation and increasing understanding about children’s communication strengths and difficulties. Some authors have shown that providing education to others can facilitate understanding and acceptance of children’s facial and speech differences (Havstam, Laakso, & Ringsberg, 2011). However, it is important to be mindful of families’ preferences as some families of children with cleft palate only may choose not to disclose to family members and friends that their children have CP±L.

105

JCPSLP Volume 22, Number 2 2020

www.speechpathologyaustralia.org.au