ABSTRACT
Participatory design (PD) is a methodology that emphasizes user participation in the design of new technologies to leverage change within organizations and services. PD originated in the computer science field in the 1970s and 1980s when new programs and technologies were developed to empower workers, by involving them in decisions that affected them. PD in health research has been proven to change clinical practice. Genuine user involvement that includes all stakeholders, and robust collaborations across sciences, sectors, and disciplines are basic elements of successful research to change clinical practice and to implement novel technical and organizational approaches. This paper summarizes seven case studies involving the use of PD in telehealth research. All cases presented promoted organizational changes supported by health information and communications technology, and have been implemented at either international, national, regional, or local levels. We describe how PD can be applied in health sciences and used to facilitate organizational changes, new perspectives, and new communications methods. The relevance and suitability of PD as a research design in health science is explained, and recommendations for conducting PD studies in telehealth research are presented. In PD, mutual learning and co-creation is facilitated. Consequently, learning from users, rather than studying them, corroborates our understanding and the emergence of new knowledge.
ABSTRACT
Pain in hospitalized infants, children, and young people (ICYP) is a well-known phenomenon but remains undertreated. This study aimed to examine documented pain management practices provided for ICYP and compare practices adopted in neonatal and pediatric units. This national retrospective multi-center study was conducted in 40 of the 42 Danish neonatal and pediatric units in November 2020. Data were collected from the medical records of ICYP admitted to a participating unit. We performed a total of 846 medical record audits of which pain was assessed in 51.9% of the ICYP. Pain assessment was documented for more infants (57.8%) than for children and young people (CYP) (47.4%) (p = 0.003). CYP more often received pain treatment (37.7%) than infants (6.9%, p < 0.0001) and more frequently had a pain treatment plan (50.8% versus 10.2%, p < 0.0001). Use of non-pharmacological treatment was documented for 6.3% of the ICYP. Our findings indicate that pain assessment is insufficiently documented in Danish neonatal and pediatric units. Among cases in which pain scores indicated that the patient had experienced pain, pain treatment was documented in a larger proportion of the pediatric population than in the neonatal population.
ABSTRACT
INTRODUCTION: Neonatal homecare (NH) can be used to provide parents the opportunity of bringing cardiopulmonary-stable preterm infants home for tube feeding and the establishment of breastfeeding supported by neonatal nurses visiting the home. However, home visits can be challenging for hospitals covering large regions, and, therefore, regular neonatal hospital care has remained the first choice in Denmark. As an alternative to home visits, telehealth may be used to deliver NH. Thus, neonatal tele-homecare (NTH) was developed. Positive infant outcomes and the optimization of family-centred care have been described, but the costs of telehealth in the context of NH remain unknown. This study aims to assess the costs of NTH compared to regular neonatal hospital care, from the health service perspective. METHODS: The cost analysis was based on an observational study of NTH in Denmark (run from November 2015 to December 2016) and followed the Consolidated Health Economic Evaluation Reporting Standards. The intervention group were the families of preterm infants receiving NTH (n = 96). The control group comprised a historic cohort of families with preterm infants, receiving standard care in the neonatal intensive care unit (NICU) (n = 278). NTH infants and the historical group were categorized according to gestational age at birth at/under and over 32 weeks. The outcomes were NTH resource utilization, in-NICU hospital bed days, re-admissions and total costs on average per infant. The time horizon was from birth to discharge. RESULTS: The costs of NTH resource utilization were, on average, 695 per infant, and the total costs per infant, on average, were 12,200 and 4200 for infants at/under and over 32 weeks, respectively. The corresponding costs of the control group were 14,300 and 4400. The difference in total costs showed statistical significance for the group of infants under 32 weeks (p < 0.001). DISCUSSION: The cost analysis showed that NTH was less costly compared to regular hospital care, especially for infants born with gestational age at/under 32 weeks. NTH is an appropriate model of care for preterm infants and their families, is clinically effective and less expensive than similar services delivered in the hospital.