Cleft palate with or without cleft lip (CP±L) is one of the most common congenital conditions affecting children across the world. Although high quality surgical and specialist interdisciplinary intervention for children with CP±L is available in many countries, this condition continues to impact children’s speech, early expressive language, feeding, middle ear function, appearance, and daily life. This thesis considered the views of international specialist speech-language pathologists (SLPs) working with toddlers with CP±L primarily in medical settings, as well as educators, families and toddlers with CP±L using a holistic child- and family-centred model. Demands resulting from diagnosis and intervention often have a significant impact, so families were given control and agency over their stories with the goal of informing and ultimately transforming SLPs’ practice. The thesis is innovative, theoretically driven, purposeful and sequential in its approach to recommending a shift in the way SLPs approach practice with children with CP±L. The research presented in this thesis, known as the Toddlers with Cleft Palate Study, consisted of two parts presented as a series of seven publications: two encyclopaedia entries, one book chapter and four journal articles. Three theoretical frameworks underpinned the thesis: International Classification of Functioning, Disability and Health (ICF-CY; WHO, 2007), Convention on the Rights of the Child (United Nations, 1989), and family-centred practice (Espe-Sherwindt, 2008; Shelton, Jeppson, & Johnson, 1987). Combining these lenses provided unique insights and enabled holistic consideration of toddlers with CP±L, their rights, and their families’ experiences. Part One of the thesis provided definitions and outlined current practices with toddlers with CP±L. Drawing on the literature, the encyclopaedia entries outlined common craniofacial conditions and the impact of CP±L on speech. In the Toddlers with Cleft Palate Study 1: Specialist SLPs’ Perspectives, semi-structured interview data from the author’s Churchill Fellowship visits with six international specialist SLPs were analysed using directed content analysis framed by the ICF-CY. The findings indicated the ICF-CY had utility in describing specialist SLPs’ practice and that specialist SLPs do consider all components and contextual factors of the ICF-CY. However, there was less focus on Activities and Participation than on Body Structures and Functions and Environmental Factors (e.g., health services and geographic location). Part Two of the thesis examined toddlers with CP±L and their families’ lived experiences, and how SLPs could best support them in the early years of life. A literature review outlined recommendations for supporting young children’s speech, language and communication to uphold their human rights in transnational early childhood education and care contexts. An innovative, ethnographic methodology was taken in the Toddlers with Cleft Palate Study 2: Toddlers’ and Families’ Experiences. This study involved observation, collection of speech and language data, interviews, photos, video data, and researcher reflection with seven toddlers with CP±L, 13 parents, and 12 significant others (e.g., educators and grandparents) around Australia. Speech and language data were evaluated to present a tutorial outlining a holistic communication protocol for SLPs to use with toddlers with CP±L. Interview data and 84 artefacts from the study (18 interviews, 29 videos, one extended audio recording of a mealtime, seven photos contributed by families, seven case history questionnaires, 18 field notes, four research reflections) were analysed inductively and revealed three themes in families’ experiences of raising toddlers with CP±L: the impact on the whole child, family strength and support, and family isolation and trauma. The findings of the two parts of the study were synthesised to present how generalist SLPs working with toddlers with CP±L could learn from clients and their families and best support them in their early years, representing a shift away from the traditional professional-centred medical model of treatment. Overall, there were three main findings from the thesis: (1) having CP±L affects many aspects of toddlers’ lives and development, not just their speech, (2) children and families’ voices should be privileged in co-creating the intervention journey in collaboration with professionals, and (3) non-specialist medical, allied health, and education professionals need to understand that the impact of CP±L extends beyond speech, and know how to support toddlers and families holistically. The thesis contributes to the literature on the impact of CP±L on toddlers and their families and is significant in terms of its ethnographic methodology and shift towards a collaborative, family-centred approach to speech-language pathology practice.
|Qualification||Doctor of Philosophy|
|Place of Publication||Australia|
|Publication status||Published - 2020|