27 Our journey, our stories: The lived experiences of parents and caregivers of children with severe neurodevelopmental disorders and behavioural complexity requiring sedation
Authors: Ooi Aaron , Salcedo (parent partner) Diana , Wroot Hayley , Richardson Anamaria 
Published: October 2024

Background

40% of children with severe neurodevelopmental disorders (NDD) in British Columbia (BC) are unable to access recommended medical evaluations due to behavioural complexity (aggression/self-injury). Medical evaluations under anesthesia (EUA) are thus often required, however, difficulties in coordination result in inequities and repeated traumatic sedations.

Objectives

We aim to describe the experiences of parents/caregivers of children with NDD and behavioural complexity undergoing EUA at BC Children’s Hospital (BCCH). Using thematic analysis we aim to identify leverage points for action to address health inequity.

Design/Methods

Patient oriented research (POR) principles guided study design, with parent partners involved throughout phases of the project including identification of study area, recruitment, development of interviews, data analysis and knowledge translation. Semi-structured interviews were conducted to explore families’ experiences of EUAs. Data collected included the child’s demographics/diagnoses, their experiences of previous EUA, and facilitators and barriers towards this.

Results

11 families participated in the study. Key stakeholders involved in care coordination of EUA were identified (Figure 1). An illustration was developed by a parent partner as a more accessible means of presenting families’ narratives (Figure 2), integrated within five emerging themes: 1) The cumulative physical/psychological trauma experienced by families when accessing care (represented by the river which deepens and widens over time); 2) The need for an awareness and understanding from providers of behavioural complexity (represented by child being left behind); 3) Requirement of equitable and not equal care, tailored towards specific needs (represented by the precarious raft and boat); 4) Communication being key (represented by the walky-talky and map); 5) Providers being willing to undertake the role of care coordination (represented by the rescue workers, with safety gear and a rope, representing resources and role of care coordination respectively). Details within each scene (e.g. dad holding up his younger son on his shoulders to shield him from the trauma vs mum holding the hand of her older daughter now immersed in the water due to repeated traumatic experiences with age) attempt to capture the nuanced experiences encountered by families over time.

Conclusion

Our results highlight the complex journey coordinating EUA for this specific population. Due to resource constraints and lack of formalised pathways, current processes are traumatic and result in missed opportunities. Next steps include advocacy by the EUA Project Group at BCCH for 1) A centralized intake process with a hospital-based coordinator role and 2) Implementation of integrated EUA algorithms and care pathways between services, to improve equitable access and minimise trauma for all involved in EUA.