A Qualitative Study of Clinicians and Parents of Children with Severe Neurological Impairment on Tools to Support Family-Centered Care.

Abstract

Background: Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital. Objectives: To describe themes related to building parent-clinician rapport and to examine ways to promote family-centered care for children with SNI. Design: Post hoc secondary analysis of data from a qualitative cross-sectional study. Setting/Subjects: Semistructured interviews conducted between August 2019 and February 2020 with parents of children with SNI and interprofessional clinicians at a single tertiary children's hospital in the United States. Measurement: Data from codes pertaining to strategies to promote therapeutic alliance were extracted for inductive thematic analysis and to collate ideas for tools suggested by participants. The research team iteratively discussed each proposed tool, developed an example representative depiction, and expanded upon potential opportunities and limitations of the tools' practical implementation. Results: Twenty-five parents/legal guardians and 25 interprofessional clinicians participated. The median age of parents/legal guardians was 38 [interquartile range 35,48]. Sixty-eight percent (n = 17) identified as mothers and 68% (n = 17) identified as white. Clinicians were predominantly female (84%, n = 21) and represented 8 professions and 15 specialties. Themes and suggested tools included (1) continuity of previous decision-making conversations and the decision roadmap tool, (2) maintaining family communication preferences and the relational handoff tool, and (3) recognizing the abilities of each individual child and the developmental inventory tool. Conclusions: Family-centered care for parents of children with SNI may be bolstered by continuity in decision making, maintaining parents' communication preferences, and appreciating the child's individual abilities. Clinical tools may provide opportunities to promote these concepts.