Holistic assessment of young children with cleft lip and palate using the ICF-CY

Objective To holistically understand the lives of young children with cleft lip and palate using a range of assessment tools informed by the International Classification of Functioning, Disability and Health: Children and Youth (ICF-CY, World Health Organization, 2007). Background Children with a cleft palate (+/- cleft lip) can have difficulties communicating, eating, and participating in daily life. Surgery to repair the cleft generally occurs in the first year of life; however, the cleft can impact children’s and families’ psychological and social functioning for many years after. Although the early years of life are a time of significant growth and development, as well as a time of multiple treatments for children with cleft palate, little is known about the impact of cleft palate on the daily lives of young children with cleft palate. The ICF-CY provides a framework to consider children’s lives holistically. Method Participants were seven children aged between 2 and 4 years of age, 13 parents, and 12 significant others(e.g., educators and grandparents). Data were collected during home visits and visits to the children’s early childhood education centres. A range of assessment tools applicable to different domains of the ICFCY were used to collect and analyse data. Results Child participants’ Body Functions including speech, language and cognitive development were assessed using the Toddler Phonology Test, Preschool Language Scales (PLS-5) screener and the MacArthur Bates Communicative Development Inventory (MB-CDI). Participants’ Body Structures were assessed via oral motor examination. Participants’ Activities and Participation were examined through interviews with family members and significant others using the Speech Participation and Activity Assessment of Children (SPAA-C), as well as observations and the completion of the Time Use Diary and Focus on the Outcomes of Children Under Six (FOCUS© ). Environmental Factors including use of communication devices,services accessed and support and relationships in the participants’ lives were measured through interview and observation. Participants’ Personal Factors such as other health conditions, coping styles,overall behaviour and character style and education were investigated via the Strengths and Difficulties Questionnaire (SDQ) and case history. Discussion The current study supports the use of measures to evaluate the experiences of young children with cleft palate more holistically. At present, assessment of children with cleft palate focuses largely on Body Functions. Measures such as the SDQ and SPAA-C may be introduced by speech pathologists wanting to consider ways to enhance young children’s participation in family, education and community life. The hope is that this research will contribute to supporting speech pathologists’ and other professionals’practice to include all domains of the ICF-CY when working with young children with cleft palate by extending current assessment protocols.