Speech-Language Pathologists in Pediatric Palliative Care: An International Study of Perceptions and Experiences

Abstract

Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients, families, and the multidisciplinary team. Method Ten participants from Australia, Canada, and the United States were recruited from a previous survey study. In-depth interviews were conducted via videoconferencing. Two coders used NVivo software to record and organize the data into themes. Interrater reliability of the coding was established with a third coder. The COnsolidated criteria for REporting Qualitative research 32-item checklist has been used for reporting the research. Results Interrater coding reliability (using weighted kappa) was .81, indicating “almost perfect” agreement on the selection of themes from the code frame. Emerging themes included clinical interventions, unique SLP skills in PPC, multidisciplinary team relationships, workforce issues, education and training, governance, medicolegal considerations, bioethical issues, and holistic care. Additional subthemes are also noted. In the absence of research evidence and practice recommendations, SLPs rely on client perspectives and clinical experience to guide their professional practice in PPC. Conclusions Qualitative survey analysis of the perceptions and experiences of SLP clinicians from three postindustrial countries identified nine major themes regarding PPC. Results expand on limited literature to date in the area of PPC. Future research using larger samples is needed to provide clinicians with best practice recommendations for working with patients, families, and the broader care team.