First Nations Patients’ Experience Receiving Care for Cleft Lip and Palate in a Multidisciplinary Clinic Setting

Abstract

Purpose: Our small-scale qualitative study sought to explore the experiences of Indigenous patients receiving care for cleft lip and/or palate at a multidisciplinary clinic. There currently are no published studies that demonstrate the experiences of cleft lip and/or palate patients receiving care in multidisciplinary clinics in Canada. This work is foundational to informing future care in a way that is reflective and cognizant of Indigenous ways of life and lived experiences. Method: Participants were recruited via purposive and snowball sampling through community networks and public advertising in relevant healthcare spaces. Semi-structured interviews were completed; transcribed verbatim and descriptive codes were generated using Indigenist research methodologies through the Blackfoot medicine wheel. Results: Five participants that included patients, parents of patients with cleft lip and/or palate, and Indigenous health liasions were interviewed. Participants indicated a lack of spiritual health, the physical demands of having a cleft lip and/or palate on a patient and their families, the fear and unknown associated with a new cleft lip and/or palate diagnosis, and lack of cultural support, awareness and racism may negatively impact mental health. Conclusion: Indigenous patients must receive cleft lip and/or palate care that is cognizant of both their cultural needs identified in our study but also reflective of the ways in which health may be conceptualized for Indigenous patients. The following models of care suggested in our study must also seek to address historic mandates that include UNDRIP and the Truth and Reconciliation Commission's Calls to Action.