Embodied relational research: How can researchers' competences in exploring existential aspects be enhanced?

BACKGROUND: This methodological essay discusses the following question: How can researchers' competences in exploring existential aspects related to healthcare be enhanced? Exploring this novel perspective on caring practice may help us better understand and communicate about experiences and issues that matter to others (e.g. patients/users). Two things are needed: firstly, a vocabulary mirroring an "aesthetic-holistic" research approach allowing us to capture the essence of "what it is like" and secondly, the development of skills and competences allowing us to understand complex aspects of caring that are embodied, ethically sensitive and sustainable. AIM: To identify personal competences and approaches underpinning research exploring "what it is like"-understanding human existence. DISCUSSION: The discussion addresses three questions: (A) What does human science exploring human existence search for? (B) Which researcher competences are required? (C) Which theoretical and practical approaches and dimensions may enhance the researchers' competences? We argue that we should find "ourselves" not only grasped through language and a qualitative research-methodological approach but also in what is reflected in the relation between self, language (dialogue) and the other. It is crucial to listen to the world in an ontological way. Emotions, feelings and bodily sensed understandings can, in some situations, bar us from stepping further into meta-physical listening and from adopting a being-in-the-world stance. In this relational perspective, the researcher may adopt an attentive pace and aesthetical attunement that transcend what cannot be reached through the language of logical, rigorous, precise and rational words, tuning into the ontological mood that exists as the tacit backdrop of our existence. This approach we dub "Embodied Relational Research." CONCLUSION: Researchers who explore humanity may benefit from cultivating awareness, sensitivity and understanding while displaying openness towards the other (the patients' or users' experiences). In this context, contemplative and creative dimensions are important to apply.

The Danish linguistic validation of the Ureteral Stent Symptoms Questionnaire.

INTRODUCTION: The aim of the study was to validate the Ureteral Stent Symptom Questionnaire (USSQ) in Danish for patients with indwelling ureteral stents. METHODS: The linguistic validation of the original USSQ was performed following standardised multi-step translation procedures. Seventy patients with indwelling ureteral stents were asked to complete the Danish USSQ one and two weeks after stent placement and four weeks after stent removal. RESULTS: A total of 65 patients (92.9%) completed the USSQ. Statistical evaluation revealed good internal consistency in all domains except work performance. Satisfactory convergent validity (less-than -0.4 or greater-than 0.4) was demonstrated for urinary symptoms, body pain and global quality of life. The test-retest reliability-coefficient was statistically significant for urinary symptoms, general health, pain and sexual matters. Inter-domain associations were positive and monotone for all subscales. All sub-scores, except sexual matters, significantly decreased from one week after stent insertion to four weeks after stent removal (p less-than 0.001). CONCLUSION: The Danish USSQ is a reliable and valid instrument with which to evaluate urinary symptoms and general health in patients with indwelling ureteral stents. FUNDING: Ideforum, Vejle Hospital, University Hospital of Southern Denmark, granted 80,000 DKK to support this work. TRIAL REGISTRATION: The Danish National Ethics Committee and Region Syddanmark approved the study (Study approval number 20192000-168 and journal number 19-52219, respectively).

Informed consent: towards improved lay-friendliness of patient information sheets.

Regional research ethics committee (REC) members have voiced a need for the linguistic improvement of informed consent documents to ensure duly informed consent and to ease committee deliberation. We have little knowledge of what elements of language use hamper comprehension, or of the extent of medical researchers' appreciation of this problem and their willingness to accept intervention. This qualitative, explorative study proposes an intervention design and tests its feasibility and acceptability. Semi-structured interviews with potential REC applicants informed a linguistic intervention benchmarked against existing guidelines, mandated locally and nationally, and then evaluated quantitatively in a semi-controlled set-up and qualitatively via questionnaires. Potential applicants professed the psychological acceptability of linguistic intervention. The intervention comprised a downloadable Microsoft Word template outlining information structure, a detailed guideline offering advice for each move and self-selected linguistic screening. It was used by 14 applicants and had a measurable effect on REC deliberation time and approval rates. The intervention instruments overall made it easier for applicants to produce informed consent documents meeting prescribed ethical standards concerning lay-friendliness. In conclusion, it was found that linguistic intervention is relevant, feasible and psychologically acceptable to REC applicants; it aids their text production process and seems to enhance the lay-friendliness of these texts.

Readability of patient information can be improved.

INTRODUCTION: The number of participants in medical experiments has declined and consent often rests on perilous ground because the participant information sheet (PIS) on which informed consent rests preserves identification with the expert environment. This study explores to which extent research ethics committee (REC) members appreciate this problem. METHODS: A retrospective analysis of ten REC applications were subjected to a naïve reading followed by structural analysis to generate themes and subthemes to guide structured REC member focusgroup interviews. This analysis informed a prospective survey where REC members registered terms and phrases posing comprehension barriers to lay receivers. RESULTS: Main barriers of comprehension were aspects of contents presentation and specialised terminology. Problematic terms centred mainly on epidemiology, design, descriptive and topographic anatomy and physiology, diagnostic procedures and medicines. Contents problems centred on irrelevant and superfluous information and poor presentation. CONCLUSION: The language, structure and format of the PIS should be improved. Avoiding technical jargon or explaining it when it is used, using more common words when they are available and a clearer structure were identified as potential targets of intervention. FUNDING: not relevant. TRIAL REGISTRATION: not relevant.