TIS – Talking in Symbols. Development of a Tool for Nonverbal Communication after Language Barriers in Pediatric Oncology

Abstract

Language barriers have been reported to have a detrimental effect on various outcomes in paediatric care, such as therapy adherence, and may even cause medical treatment errors. To address this issue, we developed a set of 63 cards with which a wide range of specific messages can be conveyed nonverbally in a clinical context. The conceptualization of the tool involved multiple phases. In Study 1, we held a workshop with 11 children and adolescents between 8 and 19 years that had received treatment for oncological conditions to gain an understanding of the specific challenges. In Study 2, we presented a first prototype to 3 children and 14 adults; participants were asked to rate the cards on multiple dimensions. Based on information from the previous trials, we developed a second prototype and asked 10 children and 7 adults to rate the cards on multiple dimensions. In this multidisciplinary approach in addition to our experts of clinical psychology we involved patient advocators and graphic designers in the process to achieve high feasibility and comprehensibility; based on the workshop, expert consensus surveys, data gathered in evaluation, all prototypes and the final card set were developed in close collaboration. Participants had little difficulty interpreting the cards and rated the information content as adequate. Importantly, a majority of participants indicated that they would keep using the tool during their stay at the hospital. Overall, the evaluation implied high acceptance and usability. The final card set is a promising communication tool in clinical paediatric settings with various language barriers. Further research should address how patient outcomes are impacted by using the tool.

Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research—A workshop report

“…Although the iterative process of continuous evaluation, adaptation, and development 60 increased the complexity and resource intensity of the present project, it yielded a clear and feasible research proposal as well as a replicable workshop framework, a workbook full of practicable tools and concrete guidelines and recommendations for future PPIE workshops. However, in addition to the availability of tools and methods, more awareness for the benefits of PPIE are necessary to foster openness to new methods and unexpected findings as well as self‐reflection among researchers 61 . Moreover, binding research standards including PPIE might be necessary to counter the believe that the involvement of childhood cancer patients into research is not feasible, too research intensive or too complex 16 .…”

“…However, in addition to the availability of tools and methods, more awareness for the benefits of PPIE are necessary to foster openness to new methods and unexpected findings as well as self-reflection among researchers. 61 Moreover, binding research standards including PPIE might be necessary to counter the believe that the involvement of childhood cancer patients into research is not feasible, too research intensive or too complex. 16 However, the outcome of a feasible and scientifically sound research proposal creatively addressing patients' actual needs highlights the relevance and benefits of patient and public involvement, especially in early research stages which should be considered worth the extra effort.…”

The oracle of D-A-Ch – Results of a Delphi Survey for the development of the evidence- and consensus-based tool “My Logbook”

“…Hence, a “My Logbook” manual for health care professionals was developed which contains basic information on the concepts of the S3-guideline underlying the “My Logbook”, as well as specific instructions for its application, including sample answers and suggested material 12 . In the realm of the ongoing multi-center study, “My Logbook” material can be provided to interested professionals and institutions upon reasonable request to the corresponding author and are described in further detail in the corresponding protocol paper 10 .…”

“…The process of the entire project is described in more detail and visualized in Fig. 1 of the corresponding protocol paper 10 .…”

“…(Trial registration identifier: ClinicalTrials.gov Identifier: NCT04474678.) uses a multi-stage process of Plan-Do-Study-Act (PDSA) cycles 9 to translate the evidence-based S3-guideline for Psychosocial Care in Pediatric Oncology and Hematology 2 into a practical psycho-educative program for children in oncological care 10 . The resulting tool consists of various booklets, each focusing on one topic and the corresponding psychosocial stressors encountered by patients during cancer treatment (e. g., “ABC of chemotherapy”, “Mission stem cell transplantation”).…”