Design and implementation of a novel patient-centered empowerment approach for pain optimisation in children undergoing major surgery.

BACKGROUND: Paediatric surgery is a stressful experience for patients and caregivers. While standardised protocols are the norm, patient-centred approaches are needed to empower patients/caregivers for an optimal perioperative pain experience. To address this gap, we employed a patient-centred approach using design thinking (DT) methodology to develop insights, map processes, identify opportunities and design solutions for individualised empowerment tools. METHODS: In consultation with DT experts, a multidisciplinary team of stakeholders (healthcare providers, patients who underwent pectus excavatum/scoliosis surgery and their caregivers), were invited to participate in surveys, interviews and focus groups. The project was conducted in two sequential stages each over 24 weeks-involving 7 families in stage 1 and 16 patients/17 caregivers in stage 2. Each stage consisted of three phases: design research (focus groups with key stakeholders to review and apply collective learnings, map processes, stressors, identify influencing factors and opportunities), concept ideation (benchmarking and co-creation of new solutions) and concept refinement. RESULTS: In stage 1, mapping of stress/anxiety peaks identified target intervention times. We identified positive and negative influencers as well as the need for consistent messaging from the healthcare team in our design research. Current educational tools were benchmarked, parent-child engagement dyads determined and healthcare-based technology-based solutions conceived. The 'hero's journey' concept which has been applied to other illness paradigms for motivation successfully the was adapted to describe surgery as a transformative experience. In stage 2, patient and caregiver expectations, distinct personas and responses to perioperative experience were categorised. Educational tools and an empowerment tool kit based on sensorial, thinking, relaxation and activity themes, tailored to parent/child categories were conceptualised. CONCLUSION: DT methodology provided novel family centred insights, enabling design of tailored empowerment toolkits to optimise perioperative experience. Adapting the hero's journey call to adventure may motivate and build resilience among children undergoing surgery.

Optimizing Pediatric Induction Experiences Using Human-centered Design.

PURPOSE: Anesthesia inhalation induction (falling asleep for a surgery using a medical mask) is often stressful for children. When children become anxious about induction, they may resist wearing the anesthesia mask. High anxiety during induction is associated with poorer outcomes after surgery, such as increased emergence delirium, increased pain and negative behavioral changes after discharge. The purpose of this project was to design an optimal anesthesia induction experience for children, with a focus on decreasing patient anxiety during inhalation induction. DESIGN: Designing for the perioperative environment requires in-depth knowledge of existing processes, needs of key stakeholders, strengths/shortcomings of existing approaches, and iterative testing of design concepts. We used a human centered design model (design research) to approach this challenge. METHODS: Hospital staff partnered with a design team at the Live Well Collaborative. Families and staff were consulted during all phases of the design process. The iterative design research process (research, ideation, refinement) was used to develop product and process concepts for optimizing the induction experience. Requirements for an optimal induction experience were defined during the research phase through reviewing the scientific literature, process mapping and benchmarking with other products. Product and process concepts were developed during the ideation phase. Concepts were tested and refined during the refinement phase. FINDINGS: The research phase provided insights about the current anesthesia induction process and what interventions help engage children in medical care. Key insights included normalizing the anesthesia mask through medical play, providing patients with an increased sense of control preoperatively and during induction, and engaging multiple senses during the process. The ideation phase led to the development of several design concepts, including an app that is activated by breathing into the anesthesia mask. During the refinement phase, concepts were shared and refined with input from families and clinical staff. This phase led to the development of a novel zoo-themed gaming app. CONCLUSIONS: The design research process facilitated the creation of a new anxiety reduction tool for the perioperative environment. The breath-controlled induction app simultaneously employs multiple evidence-based anxiety reduction techniques and is designed to seamlessly integrate into the fast-paced perioperative workflow during key stress points. Testing in the clinical setting is needed to determine the effectiveness of the app for preoperative anxiety reduction.

Compassionate Design: Utilizing Design Thinking to Preserve Sanctity, Dignity, and Personhood When Children Die.

INTRODUCTION: Greater than 70% of children who die in our institution annually die in an intensive care unit (ICU) setting. Family privacy, visitation policies, and an inability to perform religious rituals in the ICU are barriers to provide children with culturally competent, family-centered care when a child dies. The goal of this project was to profoundly understand family and staff experiences surrounding pediatric death in our institution to identify unique opportunities to design improved, novel delivery models of pediatric end of life (EOL) care. METHODS: This project utilized a structured process model based on the Vogel and Cagan's 4-phase integrated new product development process model. The 4 phases are identifying, understanding, conceptualizing, and realizing. We utilized an adaptation of this process model that relies on human-centered and design thinking methodologies in 3 phases: research, ideation, and refinement of a process or product opportunity. RESULTS: There were 2 primary results of this project: 5 process and opportunity areas to improve the EOL experience across the hospital, and a set of criteria and considerations for a dedicated EOL space. DISCUSSION: Sometimes, the best outcome we can provide for a child and their family is a peaceful, dignified death. This project utilized human-centered design to create improved process outcomes and to design a dedicated EOL space for children who die in the hospital. Offering grieving families quiet, private time with their child in a beautiful, dignified, peaceful location enables the beginning of improved bereavement outcomes for the family and staff.

Development of a clinician-parent home care education intervention.

OBJECTIVES: To examine the strengths and opportunities for improvement of current home care education practices to inform the development of the Home Care for Heart Health intervention, and to develop a web-based intervention for parents and clinicians with complimentary print materials that could provide the right education at the right time to foster a safer transition from hospital to home. METHODS: An inter-professional focus group of parents, clinicians, and designers was formed to co-create a home care education intervention for parents of children with congenital heart disease (CHD) and their care team. We used the Integrated New Product Development process model created by Jonathon Cagan and Craig Vogel at Carnegie Mellon University to develop the intervention. This process model is a way of thinking that combines horizontal and inter-disciplinary teams, stakeholder-centric focus, and a system of qualitative discovery and development evolving towards quantitative methods of refinement. RESULTS: Our team developed the Home Care for Heart Health intervention. The evidenced-based intervention includes a quick reference guide for parents of children with CHD, an accompanying app, family-friendly pathways, and clinician education. CONCLUSION: Using an inter-professional approach, our team of clinicians, parents, and design experts were able to co-create a clinician-parent home care education intervention with broad application and lifelong relevance to the Congenital Heart Disease Community. PRACTICE IMPLICATIONS: Our intervention has the potential to be used as a model for other home care education interventions for parents of children with chronic illnesses.