Playful strategies to foster the well-being of pediatric cancer patients in the Brazilian Unified Health System: a design thinking approach.

BACKGROUND: Cancer care can negatively impact children's subjective well-being. In this research, well-being refers to patients' self-perception and encompasses their hospital and care delivery assessment. Playful strategies can stimulate treatment compliance and have been used to provide psychosocial support and health education; they can involve gamification, virtual reality, robotics, and healthcare environments. This study aims to identify how playfulness, whenever applicable, can be used as a strategy to improve the subjective well-being of pediatric cancer patients in the Brazilian Unified Health System. METHODS: Sixteen volunteers with experience in pediatric oncology participated in the study. They were physicians, psychologists, child life specialists, and design thinking professionals. They engaged in design thinking workshops to propose playful strategies to improve the well-being of pediatric cancer patients in the Brazilian Unified Health System. Data collection consisted of participatory observations. All activities were video recorded and analyzed through Thematic Analysis. The content generated by the volunteers was classified into two categories: impact of cancer care on children's self-perception and children's perceptions of the hospital and the care delivery. RESULTS: Volunteers developed strategies to help children deal with time at the hospital, hospital structure, and care delivery. Such strategies are not limited to using playfulness as a way of "having fun"; they privilege ludic interfaces, such as toys, to support psychosocial care and health education. They aim to address cancer and develop communication across families and staff in a humanized manner, educate families about the disease, and design children-friendly environments. Volunteers also generated strategies to help children cope with perceptions of death, pain, and their bodies. Such strategies aim to support understanding the meaning of life and death, comprehend pain beyond physicality, help re-signify cancer and children's changing bodies, and give patients active voices during the treatment. CONCLUSIONS: The paper proposes strategies that can improve the well-being of pediatric cancer patients in the Brazilian Unified Health System. Such strategies connect children's experiences as inpatients and outpatients and may inform the implementation of similar projects in other developing countries.

Design of a User-Centered Electronic Health Tool for Glomerular Disease Management.

Introduction: Patients with primary glomerular disease (GN) have unique management needs. We describe the design of a user-centered, patient-facing electronic health (eHealth) tool to support GN management. Methods: We surveyed patients and GN expert nephrologists on disease management tasks, educational needs, and barriers and facilitators of eHealth tool use. Results were summarized and presented to patients, nephrologists, engineers, and a behavioral and implementation science expert in stakeholder meetings to jointly design an eHealth tool. Key themes from the meetings are described using rapid qualitative analysis. Results: Sixty-six patients with minimal change disease, focal segmental glomerulosclerosis, IgA nephropathy, and membranous nephropathy responded to the survey, as well as 25 nephrologists from the NIH-funded Cure Glomerulonephropathy study network. Overall, patients performed fewer management tasks and acknowledged fewer informational needs than recommended by nephrologists. Patients were more knowledgeable about eHealth tools than nephrologists. Nine patient stakeholders reflected on the survey findings and noted a lack of awareness of key recommended management tasks and receiving little guidance from nephrologists on using eHealth. Key themes and concepts from the stakeholder meetings about eHealth tool development included the need for customizable design, trustworthy sources, seamless integration with other apps and clinical workflow, and reliable data tracking. The final design of our eHealth tool, the UrApp System, has 5 core features: "Profile" generates personalized data tracking, educational information, facilitation with provider discussions and inputting other preferences; "Data Tracking" displays patient health data with the ability to communicate important trends to patients and nephrologists; "Resources" provides trusted education information in a personalized manner; "Calendar" displays key events and generate reminders; and "Journal" facilitates information documentation using written or audio notes. Conclusion: Our theory- and evidenced-based, stakeholder-engaged design process created designs for an eHealth tool to support the unique needs of patients with GN, optimized for effectiveness and implementation.

Through the Eyes of the User: Evaluating Neonatal Intensive Care Unit Design.

OBJECTIVE: This article presents a pilot study that employed a user-centered methodology for evaluating and quantifying neonatal intensive care unit (NICU) designs based on the needs of the primary users. BACKGROUND: The design of NICUs has begun to shift from open-bay to single-family rooms. Both designs present unique advantages and challenges that impact babies, families, and caregivers. METHODS: One NICU design was analyzed using the functional scenario (FS) analysis method. For the FS, users' needs were determined through literature review, interviews with NICU providers and parents, and a review of published design guidelines. Quantitative metrics were developed for each FS, so that characteristics of the NICU design could be analyzed to determine how successful they were in meeting the users' needs. The results were graphically represented to visualize the success and considerations of the design. RESULTS: A total of 23 FSs and 61 spatial metrics were developed. FSs for babies focused on infection prevention, minimizing exposure to environmental stimuli, and supporting enriching care activities. FSs for family members focused on direct access to the baby, and privacy and adequate space for daily activities. FSs for providers and caregivers focused on infection prevention, care activities, care zones, and visibility. CONCLUSION: Using an FS approach highlights design characteristics in the NICU that need to be addressed during the design process to more successfully meet the needs of the different users. Additionally, using this approach can inform design professionals' decision-making by presenting them with the design characteristics that impact the needs of the user groups.

Finding a Middle Ground: Exploring the Impact of Patient- and Family-Centered Design on Nurse-Family Interactions in the Neuro ICU.

OBJECTIVE: This comparative study of two adult neuro critical care units examined the impact of patient- and family-centered design on nurse-family interactions in a unit designed to increase family involvement. BACKGROUND: A growing evidence base suggests that the built environment can facilitate the delivery of patient- and family-centered care (PFCC). However, few studies examine how the PFCC model impacts the delivery of care, specifically the role of design in nurse-family interactions in the adult intensive care unit (ICU) from the perspective of the bedside nurse. METHODS: Two neuro ICUs with the same patient population and staff, but with different layouts, were compared. Structured observations were conducted to assess changes in the frequency, location, and content of interactions between the two units. Discussions with staff provided additional insights into nurse attitudes, perceptions, and experiences caring for families. RESULTS: Nurses reported challenges balancing the needs of many stakeholders in a complex clinical environment, regardless of unit layout. However, differences in communication patterns between the clinician- and family-centered units were observed. More interactions were observed in nurse workstations in the PFCC unit, with most initiated by family. While the new unit was seen as more conducive to the delivery of PFCC, some nurses reported a loss of workspace control. CONCLUSIONS: Patient- and family-centered design created new spatial and temporal opportunities for nurse-family interactions in the adult ICU, thus supporting PFCC goals. However, greater exposure to unplanned family encounters may increase nurse stress without adequate spatial and organizational support.

Remediation of a naming deficit following left temporal lobe epilepsy surgery.

Dysnomia is associated with temporal lobe epilepsy and may include a deficit in recalling the names of familiar people. The deficit can worsen following surgery to relieve refractory seizures. The following is a case report comparing implicit (errorless learning) and explicit (rote rehearsal) approaches to retraining face-name associations in a 52-year-old woman who was status post-amygdalo-hippocampectomy for refractory complex partial seizures. Although both approaches initially improved performance above baseline, only errorless learning resulted in stable gains during a 10-min delay and at 1-week follow-up. Initial improvements in naming with rote rehearsal were not maintained even during the 10-min delay. In patients with severe memory impairment and dysnomia, errorless learning may offer a viable rehabilitation strategy for improving naming performance.