Persistence, strength, isolation, and trauma: An ethnographic exploration of raising children with cleft palate.

BACKGROUND: The lives of families of young children with cleft palate (±lip) are complex. Multiple interventions are required as part of the long-term multidisciplinary treatment for children with CP±L, with an impairment-focused approach prevailing. Research with young children with CP±L has focused on treatment and intervention, and previous qualitative research has been collected predominantly via interviews, so little is understood about the day-to-day lives of families of young children with CP±L.

AIMS: (1) To increase understanding of the lives of children with CP±L and their families by applying an ethnographic lens to improve clinical practice (2) to identify key interactions and encounters that shape the experiences of children with CP±L and their families (3) to examine how family-centered practice can enhance practitioner-family relationships in providing effective and evidence-based care for children with CP±L.

METHOD: Ethnographic observations of seven families of children with CP±L and their families and educators including parents, siblings, aunts, grandparents, and teachers involved multiple site visits. Rich data were collected to gather information about different aspects of their lives (such as their strengths, routines, preferences, challenges and experiences). There were 84 artefacts collected: 18 interviews, 29 videos, one extended audio recording of a mealtime, seven photos contributed by families, seven case history questionnaires, and 22 field notes. These data were analyzed inductively using thematic analysis.

RESULTS: Three overarching themes and 11 subthemes were identified: (1) the whole child (persistence, communication, activities, mealtimes), (2) family strength and support (strong families, external support, attitudes, advocacy, positive medical experiences) and (3) family isolation and trauma (negative medical experiences, traumatic and challenging experiences).

CONCLUSION: This is the first study to use ethnographic methodology to facilitate the collection of unique insights into the lives of young children with CP±L and their families to improve clinical practice for SLPs. The unique application of family-centered practice with these families promoted trust and highlighted their challenges and strengths which could be considered by SLPs to provide holistic intervention.