Neurodivergent patient experience in a tertiary children's hospital-a qualitative analysis.

Introduction: Sensory processing challenges are commonly encountered in pediatric patients, particularly in those who are neurodivergent. We previously developed a novel clinical pathway (named "Sensory Pathway") which aimed at improving patient care for those with sensory barriers via staff training, provision of sensory toolkits and early integration of families throughout the hospital stay. We hypothesized that utilization of this pathway will result in improved patient experience and provide valuable feedback to improve care. Methods: A voluntary survey was made available to all patients who utilized this resource as part of our hospital wide patient satisfaction survey. Qualitative data was coded using open coding as part of the constant comparison method data using NVivo 12 for Windows software for analysis. Software was used to create word clouds and clusters for visualization, which confirmed the themes and patterns that were noted from initial open coding. Results: Between 2021 and 2022, surveys were obtained from 160 patients who utilized the Sensory Pathway. More than 50% reported that the most helpful components of the pathway were the approach by the staff and sensory tools. The three major themes identified from the survey were (1) Tools and techniques that benefited their children; (2) Positive interactions and communication with the hospital staff, and (3) Suggestions for future improvement. Conclusion: The survey results highlight the importance of having tools readily available to aid with sensory regulation and comfort of patients during healthcare encounters, the value of a positive patient and staff encounter, as well as opportunities for improvement.

Utilization of a Novel Pathway in a Tertiary Pediatric Hospital to Meet the Sensory Needs of Acutely Ill Pediatric Patients.

Objective: To identify pediatric patients with sensory sensitivities during a hospital visit, and to implement a clinical pathway that can meet their sensory needs. The goal is to remove barriers to care delivery that is related to the sensory need for pediatric patients who present with an acute medical illness. Methods: The clinical pathway (identified as 'Sensory Pathway') was developed as a joint effort between key stakeholders within the community and medical providers. The pathway was conducted in a tertiary pediatric hospital from September 2016-April 2019. The main components of this pathway included- 1. Staff training; 2. Provision of sensory toolkits and story board; 3. Early collaboration with allied professionals; and 4. Early and continuous parental involvement. The Sensory Pathway was implemented first in the emergency department, followed by inpatient units. Patients triggered the pathway through caregiver or staff identification. Demographic of patients who triggered the pathway was extracted. A detailed qualitative analysis of any parents' feedback received was performed. Results: A cohort of patients with sensory needs was identified amongst pediatric patients who presented to the hospital with an acute illness. The most common comorbidity associated with sensory sensitivity/need was Autism Spectrum Disorder (48%), followed by cerebral palsy (22.8%) and Attention-Deficit/Hyperactivity Disorder (16%). 1337 patients (51.8%) had a single comorbidity while 45.9% patients had more than one comorbidity. Only 1.3% patients had a known diagnosis of sensory processing disorder. The pathway was triggered in 2,580 patient visits with 1643 patients and 937 repeat visits. The vast majority of patients who triggered the pathway had a medical presenting complaint (vs. behavioral). The following themes emerged from the parents' feedback: 1. Additional help received specific to the child's sensory needs; 2. Feeling of comfort; and 3. Improved overall experience. Conclusion: The Sensory Pathway identified a unique profile of pediatric patients who have sensory needs during their hospital stay. The pathway was successfully implemented for children with sensory need in our hospital across a wide range of demographic and with varied medical illness.

A Community-Based Sensory Training Program Leads to Improved Experience at a Local Zoo for Children with Sensory Challenges.

Sensory processing difficulties are common among many special needs children, especially those with autism spectrum disorder (ASD). The sensory sensitivities often result in interference of daily functioning and can lead to social isolation for both the individual and family unit. A quality improvement (QI) project was undertaken within a local zoo to systematically implement a sensory training program targeted at helping special needs individuals with sensory challenges, including those with ASD, Down's syndrome, attention-deficit/hyperactivity disorder, and speech delay. We piloted the program over a 2-year period. The program consisted of staff training, provision of sensory bags and specific social stories, as well as creation of quiet zones. Two hundred family units were surveyed before and after implementation of the sensory training program. In this pilot QI study, families reported increased visitation to the zoo, improved interactions with staff members, and the overall quality of their experience. In conclusion, we are able to demonstrate that a sensory training program within the community zoo is feasible, impactful, and has the potential to decrease social isolation for special needs individuals and their families.