JCPSLP Vol 22 No 2 2020

Table 1. Stages of CP±L intervention in many Australian hospitals*

Age

Intervention

Specialist team members involved

20-week scan Cleft lip may be diagnosed antenatally

Ultrasound technicians Clinical nurse specialists Paediatricians/obstetricians Lactation consultants Midwives Multidisciplinary cleft teams

Birth

Diagnosis may occur at birth Families meet with cleft teams in the first 3 months of life

3–6 months

Primary lip repair

Plastic and reconstructive surgeons

Plastic and reconstructive surgeons Ear, nose and throat surgeons Audiologists

6–18 months Primary palate repair Hearing test(s)

Insertion of grommets generally (at time of palate repair and then as needed)

18 months + Speech-language pathology assessment and intervention Oral health checks and intervention

Speech-language pathologists Referral to local, speech-language pathologists Orthodontists, Paediatric dentists, dental hygienists Orthodontists and plastic and reconstructive surgeons Plastic and reconstructive surgeons Speech-language pathologists

5–12 years

Orthodontic intervention (e.g., maxillary expansion and alveolar bone grafting for children with cleft of the alveolus)

Lip and/or nose revision as need Possible pharyngoplasty for VPI

12–14 years

Braces and orthodontic treatment

Orthodontists Plastic and reconstructive surgeons

15–18 years

Nose surgery – revision (if needed)

Plastic and reconstructive surgeons

18 years

Jaw surgery (if needed)

Plastic and reconstructive surgeons

*Adapted from Fitzsimons and Thompson (2011)

Ethics approval The Toddlers with Cleft Palate Study had ethical approval from the Human Research Ethics Committee at the researchers’ university (protocol number H18092). An ethnographic approach to assessment and intervention The key components of the Toddlers with Cleft Palate Study assessment protocol involved an ethnographic approach to speech and language data collection. Case history interview Case history information was collected through conversations with key people in the children’s lives and immersion in the naturalistic settings of the children to learn about their experiences, strengths and needs. Starting with a thorough case history discussion with families establishes rapport, acknowledges the parents’ expertise on their children, provides insights into children’s experiences, and highlights families’ concerns and where their energies may be focused (Cronin et al., 2020b). For example, a case history interview for Sophia (Box 1) revealed there had been challenges in coordinating the release of her tight lingual frenum with insertion of grommets, and tonsillectomy and partial adenoidectomy across hospital departments. While waiting for these surgeries, Sophia was experiencing difficulties tolerating a soft band hearing aid (she had conductive hearing loss) and recurrent tonsillitis, so she and the family had less capacity for active speech-language pathology intervention at that time.

the Rights of the Child (CRC; United Nations, 1989). The frameworks were chosen to underpin the Toddlers with Cleft Palate Study to learn about children’s communication, feeding, and sensory needs, the contexts they operated in, and facilitators and barriers they experienced. The Toddlers with Cleft Palate Study consisted of three components: (a) directed content analysis of interviews with speech-language pathology professionals specialising in CP±L from four countries applying the ICF-CY to specialist SLP practice ( n = 6) (Cronin, McLeod, & Verdon, 2020a); (b) a tutorial evaluating of holistic communication assessment of children with CP±L’s ( n = 7) (Cronin, McLeod, & Verdon, 2020b); and (c) an ethnographic exploration of the experiences of families of young children with CP±L ( n = 24) (Cronin, Verdon, & McLeod, 2020). When examined together they provided valuable insights to support SLPs to engage in holistic, evidence-based, family-centred intervention for toddlers with CP±L. The first phase of the Toddlers with Cleft Palate Study mapped the ICF-CY onto specialist SLP practice with toddlers with CP±L. Findings suggested a focus by specialist SLPs on the children’s body structures and functions (e.g., speech and structures for speech) and certain medical related environmental factors (i.e., health services). There was less of a focus on the children’s families and support structures, and activities and participation. There was some acknowledgement by the participants themselves of this, supporting the need for more holistic assessment and intervention with young children with CP±L (Cronin et al., 2020a). Phases 2 and 3 of the Toddlers With Cleft Palate Study addressed how this holistic approach to assessment and intervention could be achieved.

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JCPSLP Volume 22, Number 2 2020

Journal of Clinical Practice in Speech-Language Pathology