Informed consent: Towards improved lay-friendliness of patient information sheets

2014 ◽  
Vol 10 (3) ◽  
pp. 201-211
Author(s):  
Morten Pilegaard ◽  
Hanne Berg Ravn
Keyword(s):  
Informed Consent ◽  
Information Structure ◽  
Language Use ◽  
Ethical Standards ◽  
Structured Interviews ◽  
Explorative Study ◽  
Microsoft Word ◽  
Text Production ◽  
Linguistic Intervention ◽  
Set Up

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.

scholarly journals Preoperative Group Consultation Prior to Surgery for Colorectal Cancer—an Explorative Study of a New Patient Education Method

2021 ◽  
Author(s):  
Sofie Walming ◽  
Eva Angenete ◽  
David Bock ◽  
Mattias Block ◽  
Hanna de la Croix ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Patient Education ◽  
Response Rate ◽  
University Hospital ◽  
Sense Of Control ◽  
Structured Interviews ◽  
Group Setting ◽  
Disease Treatment ◽  
Explorative Study ◽  
Group Consultation

Abstract Patients with colorectal cancer may lack information about the disease and treatment. In 2017, a group consultation before start of surgery was introduced at a university hospital in western Sweden to inform about the disease, treatment, and ongoing scientific studies. The primary aim of this study was to explore the experience of the patients attending the group consultation. Based on semi-structured interviews with patients with colorectal cancer, a questionnaire was constructed and administered to patients, both those attending and those not attending the group consultation. In total, 124 patients were included and the response rate was 86%. A majority of patients attending the group consultation would recommend it to someone else with the same illness. Of the patients attending the group consultation, 81% (30/37) patients agreed, fully or partially, that attending the group consultation had increased their sense of control and 89% (33/37) that the information they received at the group consultation increased their feeling of participation in the treatment. Preoperative group consultation is a feasible modality for informing and discussing the upcoming treatment for colorectal cancer with the patients, and the patients who attended the group setting appreciated it. Attending the group consultation increased the patients’ feeling of active participation in their treatment and their sense of control, which could possibly both improve their experience of their illness and facilitate recovery. ClinicalTrials.gov identifier NCT03888313

scholarly journals Health workers’ perspectives on informed consent for caesarean section in Southern Malawi

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Wouter Bakker ◽  
Siem Zethof ◽  
Felix Nansongole ◽  
Kelvin Kilowe ◽  
Jos van Roosmalen ◽  
...  
Keyword(s):  
Informed Consent ◽  
Caesarean Section ◽  
Health Workers ◽  
Group Discussion ◽  
Legal Protection ◽  
Analytical Framework ◽  
Structured Interviews ◽  
Middle Income ◽  
Partial Disclosure ◽  
Labour Pains

Abstract Objective Informed consent is a prerequisite for caesarean section, the commonest surgical procedure in low- and middle-income settings, but not always acquired to an appropriate extent. Exploring perceptions of health care workers may aid in improving clinical practice around informed consent. We aim to explore health workers’ beliefs and experiences related to principles and practice of informed consent. Methods Qualitative study conducted between January and June 2018 in a rural 150-bed mission hospital in Southern Malawi. Clinical observations, semi-structured interviews and a focus group discussion were used to collect data. Participants were 22 clinical officers, nurse-midwives and midwifery students involved in maternity care. Data were analysed to identify themes and construct an analytical framework. Results Definition and purpose of informed consent revolved around providing information, respecting women’s autonomy and achieving legal protection. Due to fear of blame and litigation, health workers preferred written consent. Written consent requires active participation by the consenting individual and was perceived to transfer liability to that person. A woman’s refusal to provide written informed consent may pose a dilemma for the health worker between doing good and respecting autonomy. To prevent such refusal, health workers said to only partially disclose surgical risks in order to minimize women's anxiety. Commonly perceived barriers to obtain a fully informed consent were labour pains, language barriers, women’s lack of education and their dependency on others to make decisions. Conclusions Health workers are familiar with the principles around informed consent and aware of its advantages, but fear of blame and litigation, partial disclosure of risks and barriers to communication hamper the process of obtaining informed consent. Findings can be used to develop interventions to improve the informed consent process.

scholarly journals The impact of translation modality on user experience: an eye-tracking study of the Microsoft Word user interface

2021 ◽  
Author(s):  
Ana Guerberof Arenas ◽  
Joss Moorkens ◽  
Sharon O’Brien
Keyword(s):  
User Interface ◽  
Eye Tracking ◽  
Cognitive Load ◽  
Task Completion ◽  
Eye Tracker ◽  
Software Products ◽  
Microsoft Word ◽  
Set Up ◽  
The Impact ◽  
The Given

AbstractThis paper presents results of the effect of different translation modalities on users when working with the Microsoft Word user interface. An experimental study was set up with 84 Japanese, German, Spanish, and English native speakers working with Microsoft Word in three modalities: the published translated version, a machine translated (MT) version (with unedited MT strings incorporated into the MS Word interface) and the published English version. An eye-tracker measured the cognitive load and usability according to the ISO/TR 16982 guidelines: i.e., effectiveness, efficiency, and satisfaction followed by retrospective think-aloud protocol. The results show that the users’ effectiveness (number of tasks completed) does not significantly differ due to the translation modality. However, their efficiency (time for task completion) and self-reported satisfaction are significantly higher when working with the released product as opposed to the unedited MT version, especially when participants are less experienced. The eye-tracking results show that users experience a higher cognitive load when working with MT and with the human-translated versions as opposed to the English original. The results suggest that language and translation modality play a significant role in the usability of software products whether users complete the given tasks or not and even if they are unaware that MT was used to translate the interface.

Today in Light of Yesterday: An Exploration of Workers’ Childhood Memories in the Context of Child Protection Practice

2021 ◽  
Author(s):  
Sean A R St. Jean ◽  
Brian Rasmussen ◽  
Judy Gillespie ◽  
Daniel Salhani
Keyword(s):  
Child Protection ◽  
Research Question ◽  
Childhood Adversity ◽  
Well Being ◽  
Childhood Memories ◽  
Structured Interviews ◽  
Child Protection Workers ◽  
Professional Experiences ◽  
Explorative Study ◽  
Parents And Children

Abstract Child protection workers are routinely faced with emotionally intense work, both personally and vicariously through the traumatic narratives and experiences of parents and children. What remains largely unknown is how child protection workers’ own childhood memories might influence the manner in which they experience and are affected by those narratives. The aim of this explorative study was to use Interpretive Phenomenological Analysis as a research methodology to answer the research question, ‘In what ways do social workers experience, and make sense of, their own childhood memories in the context of their child protection practice?’ Semi-structured interviews were conducted with eight child protection workers, aiming to understand their personal and professional experiences with regard to this question. The study found a relationship between various forms of childhood adversity and the presence of negative present-day triggers when participants were faced with practice scenarios that bore similarity to those experiences. Implications with regard to child protection worker well-being, countertransference and risk decision-making are discussed.

scholarly journals Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Language Use ◽  
Management Strategies ◽  
Assessment Tools ◽  
Evidence Based ◽  
Structured Interviews ◽  
Verbal Language ◽  
Parental Recognition

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

scholarly journals Sprachnormbezogene Akkommodation in der Hochschullehre

2020 ◽  
Vol 72 (1) ◽  
pp. 33-62
Author(s):  
Philip C. Vergeiner
Keyword(s):  
Foreign Language ◽  
Language Use ◽  
Group Membership ◽  
Language Attitudes ◽  
Tertiary Education ◽  
Sociocultural Context ◽  
Standard Variety ◽  
Structured Interviews ◽  
Rule Analysis ◽  
The Relationship

AbstractThis paper examines the relationship between accommodation processes and social norms in varietal choice within tertiary education in Austria. The investigation consists of (a) a content analysis of metalinguistic statements in semi-structured interviews and (b) a variable rule analysis of actual language variation in university lectures.The findings show that there are norms prescribing that listeners must have at least be able to comprehend a particular variety, whereas accommodation to actual language use does not appear to be required to the same extent. However, the norms depend strongly on group membership: while there is a norm prescribing the use of the standard variety in the presence of speakers of German as a foreign language, there is no such norm for Austrians vis-à-vis people from Germany, although speakers from both groups may lack the ability to understand the respective nonstandard varieties. This difference can be explained by the sociocultural context and differing language attitudes.

scholarly journals REXIC project: retrospective cross-sectional study of documentation of informed consent for research biobanking in a public research and teaching hospital

2013 ◽  
Vol 2 (1) ◽  
pp. 10 ◽  
Author(s):  
Marta Nobile ◽  
Elena Garavelli ◽  
Barbara Gagliardi ◽  
Silvia Giovanelli ◽  
Paolo Rebulla ◽  
...  
Keyword(s):  
Informed Consent ◽  
Standard Model ◽  
Cross Sectional Study ◽  
Essential Elements ◽  
Cross Sectional ◽  
Research And Teaching ◽  
Single Standard ◽  
Set Up ◽  
Design And Methods

<em>Background</em>. The Center for Transfusion Medicine, Cell Therapy and Cryobiology, Milan, Northern Italy, is the headquarter of the POLI-MI biobank. It co-ordinates the biobank activities of the Fondazione Ca’ Granda Ospedale Maggiore Policlinico of Milan. Such activities require specific safeguarding of donors’ rights and protection of sensitive and genetic data. The Fondazione Ca’ Granda Ospedale Maggiore Policlinico has set up a project on informed consent with the aim of developing awareness and understanding of this issue. Within this project, it has been decided to evaluate how consent for biobanking material is expressed. <em>Design and methods.</em> The aim of the study was to evaluate the quality and completeness of consent to biobanking in the POLI-MI biobank. This was a retrospective study carried out in 2012 on samples of consent declarations collected by biobank units in 2011. Some units used a single, standard consent model available from a previous POLI-MI biobank workgroup. Other units used models which had been previouly formulated. Evaluation was made using a form that indicated the essential elements of consent. <em>Results</em>. A total of 48 consent declarations were collected using the single, standard model and 84 were collected using other models. The consent declarations that used the single, standard model were found to be the most complete and were filled in better than other models. <em>Conclusions</em>. Progressive adoption of a simple, standard consent model is expected to improve the quality of consent acquisition. Regular audit of the compliance of consent practices with ethical and legal requirements is mandatory to improve the quality of research biobanking.

scholarly journals Teachers’ Perception about English as a Medium of Instructions: Evidence from the Government Higher Secondary Schools of Sindh, Pakistan

2021 ◽  
Vol 11 (4) ◽  
pp. 362-371
Author(s):  
Abul Ala Mukhtar ◽  
Zafarullah Sahito ◽  
Abida Siddiqui
Keyword(s):  
Secondary Schools ◽  
English Language ◽  
Mother Tongue ◽  
Social Institutions ◽  
Medium Of Instruction ◽  
Structured Interviews ◽  
Common People ◽  
British Rule ◽  
The Government ◽  
Set Up

This case study inquires the perceptions and experiences of teachers about the English as a medium of instructions at government higher secondary schools of Warah city of Sindh, Pakistan. It witnesses that a large chunk of the population is diversified to use their provincial or regional languages as destined by socio-political heritage. Because English was remained a paramount part of educational context in Pakistan during British rule. In Sindh, students learn English from their teachers at their schools, who by no means really acquire the required proficiency in the English language. The research design undertaken was qualitative in nature and revolved around the semi structured interviews. English as a medium of instruction has a daunting and remarkable role to set to be set up across the globe. The mother tongue has the supreme role to play in the organized system of social institutions, which has massive resources of linguistics pouring down to the common people in the forms of superb streams of dialects with definite code of syntax, semantics and pragmatism. The extra reading materials with the support of technology, the English lessons can play a pivotal role to give internalization and adaptation of English language as a medium of instruction.

scholarly journals A Bridge to Portugal: Language and Identity in Bridgeport, CT

2020 ◽  
Vol 5 (2) ◽  
pp. 123-140
Author(s):  
Fabio Scetti
Keyword(s):  
Identity Construction ◽  
Language Contact ◽  
Language Use ◽  
Participant Observation ◽  
American English ◽  
Ethnographic Study ◽  
Language And Identity ◽  
Speech Community ◽  
Structured Interviews ◽  
The Status

Here I present the results of BridgePORT, an ethnographic study I carried out in 2018 within the Portuguese community of Bridgeport, CT (USA). I describe language use and representation among Portuguese speakers within the community, and I investigate the integration of these speakers into the dominant American English speech community. Through my fieldwork, I observe mixing practices in day-to-day interaction, while I also consider the evolution of the Portuguese language in light of language contact and speakers’ discourse as this relates to ideologies about the status of Portuguese within the community. My findings rely on questionnaires, participant observation of verbal interaction, and semi-structured interviews. My aim is to show how verbal practice shapes the process of identity construction and how ideas of linguistic “purity” mediate the maintenance of a link to Portugal and Portuguese identity.

scholarly journals Orientations towards English among English-medium Instruction Students

2015 ◽  
Vol 2 (1) ◽  
pp. 1-38 ◽  
Author(s):  
Ali Karakaş
Keyword(s):  
Undergraduate Students ◽  
Language Use ◽  
Language Ideologies ◽  
Native Speaker ◽  
American English ◽  
Main Body ◽  
Structured Interviews ◽  
British English ◽  
Spoken English ◽  
English Medium Instruction

Abstract Based on the empirical data of my PhD research, this paper analyses the perceptions of 351 undergraduate students enrolled at English-medium universities towards English in terms of the language ideology framework. The students were purposively sampled from three programs at three Turkish universities. The data were drawn from student opinion surveys and semi-structured interviews. The findings paint a blurry picture, with a strong tendency among most students to view their English use as having the characteristics of dominant native varieties of English (American English & British English), and with a high percentage of students’ acceptance of the distinctiveness of their English without referring to any standard variety. The findings also show that many students’ orientations to English are formed by two dominant language ideologies: standard English ideology and native speaker English ideology. It was also found that a large number of students did not strictly stick to either of these ideologies, particularly in their orientation to spoken English, due, as argued in the main body, to their experiences on language use that have made them aware of the demographics of diverse English users and of the diverse ways of using English.

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