Strengthening the Therapeutic Alliance Between Parents of Children with Severe Neurologic Impairment and Healthcare Providers During Critical Decision-Making (T315B)

Objectives 1. Recognize the barriers to developing a therapeutic alliance between parents of children with severe neurologic impairment (SNI) and multidisciplinary providers during their child's hospitalizations. 2. Describe Results from a qualitative study of parents of children with SNI and providers that identified 3 factors associated with developing a therapeutic alliance specific to children with SNI including: 1) appreciating the child's unique needs; 2) openness, curiosity, and thinking 'outside the box;' and 3) responsibility/advocacy to overcome system-level issues. Original Research Background Parents of children with severe neurologic impairment (SNI) face many important decisions for their child during hospitalizations. These decisions are often made with the support of multidisciplinary providers who must establish a therapeutic alliance, but this can be difficult when stress is high and providers lack continuity. Research Objectives To describe perspectives on forming a therapeutic alliance between parents of children with SNI and their providers during critical decision-making in the hospital setting. Methods Inductive thematic content analysis of semi-structured interviews of parents of children with SNI admitted at Seattle Children's Hospital from August 2019-February 2020 and their providers. Results 45 individuals participated: 20 (44%) parents and 25 (56%) healthcare professionals. The majority of parents had children with congenital/chromosomal conditions (n=13, 65%), >5 subspecialists (n=14, 70%), and technology-dependence (n=19, 95%). >70% of parents were mothers and identified as the primary decision-maker. Providers included nurses (n=8, 32%), physicians (n=8, 32%), social workers (n=5, 20%), other psychosocial clinicians (n=2, 8%), and developmental therapists (n=2, 8%). Beyond respect, trust, and emotional support, parents and providers identified 3 factors associated with developing a therapeutic alliance specific to children with SNI including: 1) appreciating the child's unique needs; 2) openness, curiosity, and thinking "outside the box;" and 3) responsibility/advocacy to overcome system-level issues. Conclusion There are specific factors to forming a therapeutic alliance between parents of children with SNI and providers. Relationships that foster a shared understanding of the child's unique needs and curiosity about different perspectives may aid in the development of an alliance that meets the distinct needs of parents of