The impact of active research involvement of young children in the design of a new stereotest

Abstract

Background: Although considered important, the direct involvement of young children in research design is scarce and to our knowledge its impact has never been measured. We aim to demonstrate impact of young children's involvement in improving the understanding of a new 3D eye test or stereotest. Methods: After a pre-measure of understanding was taken, we explored issues with the test instructions in patient and public involvement (PPI) sessions where children acted as advisers in the test design. Feedback was collected via observations, rating scales and verbal comments. An interdisciplinary panel reviewed the feedback, discussed potential changes to the test design, and decided on the implementation. Subsequently, a post-measure of understanding (Study 1-2) and engagement (Study 3) was collected in a pre-post study design. Six hundred fifty children (2-11.8 years old) took part in the pre-measure, 111 children (1-12 years old) in the subsequent PPI sessions, and 52 children (4-6 years old) in the first post-measure. One hundred twenty-two children (1-12 years old) and unrelated adults took then part in a second series of PPI sessions, and 53 people (2-39 years old) in the final post-measure. Adults were involved to obtain verbal descriptions of the target that could be used to explain the task to children. Results: Following feedback in Study 1, we added a frame cue and included a shuffle animation. This increased the percentage of correct practice trials from 76 to 97% (t (231) = 14.29, p < .001), but more encouragements like 'Keep going!' were needed (t (64) = 8.25, p < .001). After adding a cardboard demo in Study 2, the percentage of correct trials remained stable but the number of additional instructions given decreased (t (103) = 3.72, p < .001) as did the number of encouragements (t (103) = 8.32, p < .001). Therefore, changes in test design following children's feedback significantly improved task understanding.

Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

“…The questionnaires were aimed at adults which is why assistance by a legal guardian was recommended for underaged participants. Both versions included the same basic information on the concept of PPIE and were structured equivalently, assessing the 1 respondents' demographic information 2 ; relation to the health care sector (e.g., illness, profession, or family) 3 ; current knowledge about PPIE 4 ; ways in which patients are/could be involved in research and development in the HCS 5 ; the subjective relevance of research in the HCS 6 ; respondents' preceding experience with PPIE; and 7 challenges and concerns regarding PPIE. The original German version was moreover translated and retranslated by native‐speaking patient experts to English, French, Spanish, and Croatian and pretested among the steering group (HCPs, patient experts, patient advocates).…”

“…The lectures provided information on the present research project, the concept of PPIE, the bio‐psycho‐social model 47 and the consecutive stages of the scientific research process. In open space exercises all members were asked 1 what they associate with research, 2 which questions they would like to explore, and 3 their associations with PPIE. All answers were written down on sticky notes and collected on poster walls.…”

“…With the support and guidance of the moderators, each group then worked through an entire research cycle. Thereby obstacles, ideas for solutions, and visions were discussed for 1 developing a research question 2 finding the appropriate methodology, and 3 analyzing, interpreting, and implementing the results. In a final workshop section, the results of each group were presented in plenary before the achievements of the day were summarized and ideas for the training tool were discussed.…”

“…Closing the gap between patients, researchers, and health care professionals (HCP) has been linked to better quality of care; higher real‐life relevance and translatability of studies; more successful recruitment for clinical trials; and more informed decisions as well as empowerment of those affected. 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 To date, however, research priorities, decisions about funding allocation, and the conduct of scientific studies is predominantly guided by scientific researchers rather than the affected patient community. 10 , 11 Furthermore, information on current research projects as well as the results of clinical trials are often only accessible within the academic context and not presented in a language appropriate for lays.…”

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

“…12 Among the benefits associated with PPIE in pediatric oncology, researchers name the increased relevance of research, higher patient satisfaction, more effective recruitment of participants and better acceptance and feasibility of research findings. [13][14][15] However, despite a considerable growth in scientific interest in the topic as well as its inclusion into research and care standards, there is still a lack of general awareness for the topic and deficient practical implementation, especially in the most defining early research phases. 8,[15][16][17][18] Besides lacking awareness, heterogenous terminology and insufficient reporting of results, one major barrier to the sustainable establishment of PPIE is the lack of effective methodologies for its implementation, especially for vulnerable groups such as pediatric oncological patients.…”