Journey of ethics - Conducting collaborative research with people with dementia.

This paper explores some of the ethical considerations of working collaboratively with people with dementia within research based upon the experiences, challenges and learning from three doctoral research studies. Focus is on the research relationship with participants and gatekeepers, the importance of setting and access, the power relations within the research and ways in which people with dementia can be supported to be active and have a voice in research. This sits within an ethical framework of principalist ethics and ethics of care to guide not only how research is planned ethically and with consideration of participants, but also how this can support decisions made in situ. The aim is to share, based upon these three studies, ways of managing and working through some of the ethical consideration to support researchers in their decisions in planning and conducting research with people with dementia as active collaborators.

Qualitative research interviewing: reflections on power, silence and assumptions.

BACKGROUND: Novice researchers can face many challenges throughout their journey as researchers in training, particularly when interviewing for qualitative research. AIM: To present an authentic account of the challenges a novice researcher faced when collecting data using narrative interviews. DISCUSSION: The researcher reconsidered how previous interviews had involved power relations and the urge to seek a 'correct' answer from participants. The article explores what are considered 'data', as well as the use of laughter and silence to re-establish power dynamics. CONCLUSIONS: Reflection, feedback from supervisors and peers, and ongoing research experience can help novice researchers understand the strengths and weaknesses of their previous interviews. IMPLICATIONS FOR PRACTICE: Novice researchers may find this article useful when planning for challenges they may encounter when undertaking qualitative research.

Presumption of sexual abuse in children and adolescents: vulnerability of pregnancy before 14 years.

OBJECTIVES: to investigate the presumption of sexual abuse through the records of live births with mothers up to 13 years of age. METHODS: this is a quantitative study, with an ecological design, carried out in Maceió, with data from the Brazilian Live Birth Information System from 2009 to 2017, based on Law 12,015/2009, on sexual crimes against the vulnerable, applying the presumption of violence in children under 14 years old. RESULTS: nine hundred fifty-three births of children with mothers aged 10 to 13 years were recorded; 1.3% were reported as victims of sexual abuse; 20.3% declared to be married or living in a stable relationship. Records were concentrated in 04 neighborhoods, Guaxuma, Benedito Bentes, Tabuleiro do Martins, and Jacintinho. CONCLUSIONS: there was a prevalence of pregnancy and marriage in girls under 14 years of age and scarcity of reporting presumed sexual abuse by health professionals.

Am I being watched? The role of researcher presence on toddlers' behaviour during 'everyday' pain experiences: a pilot study.

Objective: Paediatric research on 'everyday' pain experiences is sparse, stemming from a lack of appropriate methodologies. We explored the feasibility of two methodologies for conducting naturalistic observations of 'everyday' pains within family's homes, against an established methodology for day-care observations. Design: Within family homes, video-cameras recorded a typical morning or afternoon (maximum three hours), either with, or without researcher presence. To compare feasibility, children in day-care were observed by researchers for three hours without video-recording. Outcome measures: logistics of observation, child pain behaviours, caregiver responses to child pain. Results: Thirteen children (Mage = 45.4 months) were recorded at home, experiencing 14 pain events. Researcher presence increased child distress intensity, but reduced the number of pain events compared to sessions without a researcher. Thirty-two children (Mage = 48.4 months) were observed in day-care, experiencing 44 pain events. Children experiencing pain events in day-care exhibited decreased distress and lower personal control than those observed at home. Across all conditions, caregivers engaged mostly in physical comfort. Researcher estimates of child pain were highest if scored while present in the home. Conclusions: Observing everyday pain events within the child's natural environment is feasible and may provide insight into the social context of childhood pain experiences.

O que facilita e dificulta a aprendizagem? a perspetiva de adolescentes / ¿qué facilita y dificulta el aprendizaje? la perspectiva de los adolescentes / What makes learning easier and more difficult? the perspective of teenagers

RESUMO Este estudo qualitativo teve como objetivo analisar as perceções de alunos adolescentes acerca dos aspetos que facilitam e dificultam a sua aprendizagem. O conhecimento das perceções dos alunos sobre a sua aprendizagem permite melhorar a qualidade dos processos de ensino-aprendizagem. A partir de um guião semiestruturado, foram realizados cinco grupos focais, em cinco escolas privadas do Norte de Portugal, tendo participado 32 alunos selecionados aleatoriamente. Os participantes eram alunos do 3º ciclo do Ensino Básico (7º, 8º e 9º anos), com idades compreendidas entre os 12 e os 15 anos. A análise dos dados seguiu um processo semi-indutivo de codificação descritiva. Os resultados realçam o papel fundamental do professor na aprendizagem; a importância da ação vs passividade dos alunos na sala de aula; a relevância da dimensão emocional e relacional para o envolvimento do aluno; e a relevância das estratégias de autorregulação da aprendizagem. Como implicações sugere-se a concretização de ações junto de professores e alunos assente nos dados recolhidos e analisados, que sejam promotoras da metacognição de ambos.

RESUMEN Este estudio cualitativo tuvo como objetivo analizar las percepciones de alumnos adolescentes acerca de los aspectos que facilitan y dificultan su aprendizaje. El conocimiento de las percepciones de los alumnos sobre su aprendizaje permite mejorar la calidad de los procesos de enseñanza-aprendizaje. A partir de un guión semiestructurado, cinco discusiones en grupos focales se llevaron a cabo en cinco escuelas privadas en el Norte de Portugal, que han participado 32 estudiantes seleccionados aleatoriamente. Los participantes eran alumnos del 3º ciclo de la Enseñanza Básica (7º, 8º y 9º años), con edades comprendidas entre los 12 y los 15 años. El análisis de los datos siguió un proceso semi-inductivo de codificación descriptiva. Los resultados subrayan el papel fundamental del profesor para el aprendizaje; la importancia de la acción de los alumnos en el aula versus pasividad; la relevancia de la dimensión emocional y relacional para la participación del alumno y de las estrategias de autorregulación del aprendizaje. Como implicaciones se sugiere la concreción de acciones junto a profesores y alumnos acerca de los datos recogidos y analizados, que sean promotores de la metacognición de ambos.

ABSTRACT This qualitative study aimed to understand the perceptions of adolescent students about what facilitates and hinders their learning. The knowledge of students' perceptions about their learning allows to improve the quality of the learning processes quality. Five focus groups were conducted, with a semi-structured script, in five different private schools from the North of Portugal, having participated in 32 students randomly selected. Participants were students from 7th, 8th and 9th grades, with ages between 12 and 15 years old. The data analysis followed a semi-inductive process and descriptive coding of data. The results highlighted the key role of teachers in students' learning; the importance of students action versus passivity in the classroom; the relevance of emotional and relational dimension to enhance students' engagement, and the relevance of learning self-regulation strategies. As for implications, it is suggested that actions be carried out with teachers and students based on the data collected and analyzed, in order to promote metacognition of both.

"se eu soubesse, não teria vindo": implicações e desafios da entrevista qualitativa / "si supiera, no estaría aquí": implicaciones y desafíos de la entrevista cualitativa / "if i had known, i wouldn't have come": implications and challenges of qualitative interview

RESUMO Por se tratar de uma técnica que privilegia a investigação do sentido, a entrevista é uma das ferramentas mais utilizadas em pesquisas qualitativas. Faz-se necessária, portanto, uma reflexão sobre seu uso. O objetivo deste artigo é discutir os desafios, para a equipe de pesquisa, na utilização da entrevista qualitativa e seus possíveis impactos à pessoa entrevistada. A análise, sustentada em trechos de entrevistas extraídos de diferentes projetos, debruçou-se sobre dois aspectos: 1. a relação entre pesquisadores e participantes; e 2. possíveis implicações para entrevistados. Discute-se que a entrevista se constitui no campo intersubjetivo pesquisador-participante, com variabilidades e influências contextuais, que estão para além da possibilidade de controle total sobre o processo, evidenciando o papel ativo de ambos no acontecimento da entrevista. A respeito das implicações, observa-se que a entrevista possibilita um momento oportuno para a expressão de experiências não reveladas em outros contextos e que, ao revisitar sua história, a percepção sobre ela e sobre si pode se alterar ao longo da narração. Estes aspectos fazem com que a entrevista seja momento de constituição de sentidos e não de mero relato, o que pode também implicar mobilização de afetos. Diante dessas questões, nota-se que a entrevista pode oferecer, concomitantemente, risco de sofrimento e possibilidade de ressignificação para os participantes. Concluímos que, tanto do ponto de vista ético quanto da viabilidade da pesquisa, é necessário para a condução da entrevista conhecimento teórico-metodológico, acolhimento e empatia, bem como disponibilidade e confiança por parte de quem narra sua história.

RESUMEN Por tratarse de una técnica que privilegia la investigación del sentido, la entrevista es una de las herramientas más utilizadas en investigaciones cualitativas, configurándose necesario la reflexión sobre su uso como instrumento. El objetivo del presente artículo es discutir los desafíos para el investigador en la entrevista cualitativa y posibles impactos para el participante-entrevistado. El análisis, fundamentada en extractos de entrevistas retirados de diferentes proyectos, se centró en dos aspectos: 1. La relación entre investigador y participante y 2. Posibles implicaciones para el entrevistado. Se discute que la entrevista se constituye en el campo intersubjetivo investigador-investigado, con variabilidades e influencias contextuales que están más allá de la posibilidad de control total del investigador sobre el proceso, evidenciando el papel activo de ambos en el acontecimiento de la entrevista. Con respeto a las implicaciones, se observa que la entrevista es oportunidad de expresar experiencias no reveladas en otros contextos y que, al revisar su historia, la percepción del narrador sobre ella y sobre sí mismo puede cambiar. Estos aspectos hacen de la entrevista momento de constitución de sentidos y no mero relato, lo que puede también implicar en la movilización de afectos no elaborados. Ante estas cuestiones, se nota que la entrevista puede ofrecer concomitantemente riesgo de sufrimiento y posibilidad de resignificación para el participante. Concluimos que, tanto desde el punto de vista ético, como de la viabilidad de la investigación, es necesario al entrevistador no sólo el conocimiento teórico-metodológico, sino también acogida y empatía, y por parte del participante, disponibilidad y confianza.

ABSTRACT Since the interview is a technique that favors the investigation of meaning, it is one of the most used tools in qualitative research, requiring a study on its uses. This article aimed to discuss the challenges for the researcher in the use of the qualitative interview and possible implications for the interviewed. Our analysis, based on excerpts from interviews drawn from different research projects, focused on two aspects: 1. The relationship between researcher and participant, and 2. Possible implications for the interviewee. We argue that the researcher-participant intersubjective field constitutes the interview, with contextual variability and influences that preclude the possibility of complete control of the process by the investigator, conferring an active role to both interactors. Concerning the implications for the interviewee, we point out that the interview is an opportunity for the participant to reveal previously untold experiences, and that, by revisiting his/her history; the narrator may change his/her perspective about it and about him/herself. These aspects turn the interview into a moment of sensemaking and not a mere report, which may also imply the mobilization of unelaborated affections. Given these issues, we note that the interview may concomitantly present to the participant the risk of suffering as well as the possibility of making new understandings about their experiences. We conclude that from an ethical point of view, considering as well the viability of the research, the interviewer must display not only the required theoretical and methodological knowledge but also acceptance and empathy, whereas the participant must show availability and trust.

Engagement of Urban, Pregnant Puerto Rican Women in Health Disparities Research.

Persistent challenges surround the recruitment of minority women from marginalized communities in health disparities research. These challenges include lack of the following: interest in research participation, trust, positive relationships between researchers and participants/community, and principal investigators from minority groups. The purpose of this article is to describe successful recruitment strategies used in health disparities research with pregnant Puerto Rican women and to suggest ways to ensure the future success of studies on health disparities. Suggested strategies include creating trust, facilitating active participation of stakeholders, and strengthening the research pipeline with undergraduate and graduate nursing students.

Cancer Clinical Trial Patient-Participants' Perceptions about Provider Communication and Dropout Intentions.

Objective: To study the relationship between cancer patient/research participants' perceptions of communication with their research nurse and doctor and (1) participants' thoughts of dropping out from their cancer clinical trials (CCTs), (2) how informed they felt before and during their clinical trial participation, and (3) trust in their researchers. Methods: We surveyed 110 adult cancer patients who were enrolled in cancer clinical trials by using 15 modified items from the Medical Communication Competence Scale measuring information exchange and relational communication. Retention was measured by two items: ever thought about dropping out (yes/no) and likelihood of remaining enrolled in the clinical trial (5-point Likert item). We asked how well informed about the trial participants felt at enrollment, at the date they filled out the survey, and about changes in the trial. Results: Patient-participants with thoughts of dropping out from their CCTs rated their communication with research doctors lower than those who did not have thoughts of dropping out (4.14 versus 4.46, t = 2.22, p = 0.03). Patient-participants' intention to remain enrolled was correlated with more favorable scores on relational communication (such as contributing to a trusting relationship and showing compassion) with research doctors (r = 0.20, p = 0.04) and nurses (r = 0.25, p = 0.01). Communication with doctors was also associated with how informed patient-participants felt during their clinical trials. Conclusions: Relational communication with research doctors and nurses was significantly related to thoughts about remaining enrolled or dropping out of a clinical trial among adult participants in cancer treatment clinical trials. Practice Implications: Relational communication with cancer patients advances retention in research.

Role of distractors in delayed matching-to-sample arrangements in tests for emergent relations

Some studies have presented math tasks as distractors in Delayed Matching-to-Sample (DMTS) procedures between the offset of the sample stimulus and the onset of the comparison stimuli in tests for equivalence class formation. The main findings have been a decrease in experimenter-defined correct matching performance when participants have been exposed to such distractors. Therefore, the purpose of two experiments in the present study was to extend the knowledge of how different types of distractors may or may not influence equivalence class formation in DMTS procedures. Experiments 1 and 2 were arranged as ABA designs. The A-phases were arranged without distractors and the B-phases with distractors during testing. In the test phases, dictation tasks were used as distractors in Experiment 1, while echoic tasks were used as distractors in Experiment 2. The results showed that matching accuracy and equivalence class formation were reduced in the B-phases but not in the A-phases in Experiment 1, while the echoic tasks did not influence performance in Experiment 2. The results are also discussed on the basis of the criterion of correct responding

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The importance of how research participants think they are perceived: results from an electronic monitoring study of antiretroviral therapy in Uganda.

Novel monitoring technologies in HIV research, such as electronic adherence monitors (EAMs), have changed the nature of researcher-participant interactions. Yet little is known about how EAMs and the resulting interaction between researchers and participants affect research participation and the data gathered. We interviewed participants and research assistants (RAs) in an observational cohort study involving EAMs for HIV antiretroviral therapy (ART) in Uganda. We qualitatively explored interviewees' views about ethical issues surrounding EAMs and assessed data with conventional and directed content analysis. Participants valued their relationships with RAs and were preoccupied with RAs' perceptions of them. Participants were pleased when the EAM revealed regular adherence, and annoyed when it revealed non-adherence that contradicted self-reported pill-taking behavior. For many, the desire to maintain a good impression incentivized adherence. But some sought to creatively conceal non-adherence, or refused to use the EAM to avoid revealing non-adherence to RAs. These findings show that participants' perceptions of the study staff's perceptions of them affected the experience of being monitored, study participation, and ultimately the data gathered in the study. Investigators in monitoring-based research should be aware that social interactions between participants and study staff could affect both the practical and ethical conduct of that research.

Factors influencing parental trust in medical researchers for child and adolescent patients' clinical trial participation.

Parental trust in medical researchers is a commonly cited barrier to their child's participation in clinical research. Yet, there is little understanding of factors influencing parental trust to be implemented in interventions to address their concerns. This study seeks to identify psychosocial and modifying factors influencing parental trust in medical researchers to improve child and adolescent patients clinical trial participation, and potentially their health outcomes. We conducted a cross-sectional study with 307 parents. Multiple ordinary linear (OLS) regression was conducted to determine: (1) psychosocial and modifying factors associated with parental trust; and (2) perceived advantages and disadvantages associated with parental trust. Parent's race (White) (ß = .343, p < .001), higher education level (ß = .409, p < .001), higher perceived advantages of adolescent clinical trials (ß = .142, p < .001), and lower perceived disadvantages of adolescent clinical trials (ß = -.337, p = .001) were the most significant predictors of higher levels of parental trust in medical researchers. Parents who were African American and had lower education levels expressed lower levels of trust in medical researchers. Education on the benefits of clinical trials could reduce parents' apprehension towards their child's participation in clinical trials. Results support the development of a clinical trial education program for parents to improve their trust in medical researchers.

Involving patients and the public in medical and health care research studies: An exploratory survey on participant recruiting and representativeness from the perspective of study authors.

Research on patient and public involvement so far concentrates on defining involvement, describing its methods, and analyzing involvement practices in various individual research disciplines. There is little empirical data on the process of and aims for selecting (lay) PPI participants, and to what extend they can and should be representative of the population at large. To explore practices and perceptions on these issues and on future PPI conduct more generally, we sent an electronic survey to authors who published involvement activities as part of their studies in medical and social science journals. We identified such authors with a systematic search of five databases and applied descriptive statistics for analysis. Of those who returned the survey (n = 127 of 315; 40%), most had previously conducted involvement activities (73%). 45% reported more than one type of involvement, e.g. consultation and deliberation and participation (14%) and to have recruited more than one type of participant for their PPI activity (56%), e.g. 'lay publics' and 'expert publics' (33% of 71). Representativeness was often seen as a crucial objective when selecting PPI participants, while less than half found it very easy (9%) or rather easy (34%) to select participants. Many respondents considered achieving good representativeness difficult (52%) or very difficult (17%). They identified significant respective challenges and desired more guidance on various aspects of planning and conducting PPI (56%). 55% thought that the concept of "involvement" should be changed or improved. We conclude that recruiting lay people for PPI activities and deciding about and handling representativeness are controversial in current PPI practice, given the manifold challenges mentioned by the survey respondents. Our findings may inform further research particularly regarding-the potentially many cases of-unpublished PPI.

The relationship between interviewer-respondent familiarity and family planning outcomes in the Democratic Republic of Congo: a repeat cross-sectional analysis.

OBJECTIVES: The typical approach of survey data collection is to use interviewers who are not from the study site and do not know the participants, yet the implications of this approach on data quality have seldom been investigated. We examine the relationship between interviewer-respondent familiarity and selected family planning outcomes, and whether this relationship changes over time between 2015 and 2016. SETTING: We use data from the Performance Monitoring and Accountability 2020 Project in Kongo Central Province, Democratic Republic of Congo. PARTICIPANTS: Participants include representative samples of women of reproductive ages (15 to 49), 1565 interviewed in 2015 and 1668 in 2016. The study used a two-stage cluster design: first randomly selecting enumeration areas (EAs), then randomly selecting households within each EA. DESIGN: We first identify individual characteristics associated with familiarity between RE and respondent. Next, we examine the relationship between RE-respondent acquaintance and family planning outcomes. Finally, we use two waves of data to examine whether this relationship changes over time between 2015 and 2016. RESULTS: In multivariate analysis, interviewer-respondent acquaintance is significantly associated with last birth unintended (OR 1.91, 95% CI 1.17 to 3.13) and reported infertility in 2015 (OR 2.26, 95% CI 1.03 to 4.95); and any contraceptive use (OR 1.51, 95% CI 1.01 to 2.28), traditional contraceptive use (OR 1.79, 95% CI 1.10 to 2.89), reported infidelity (OR 1.89, 95% CI 1.02 to 3.49) and age at first sex (coefficient -0.48, 95% CI -0.96 to -0.01) in 2016. The impact of acquaintance on survey responses changed over time for any contraceptive use (OR 2.09, 95% CI 1.33 to 3.30). CONCLUSIONS: The standard in many large-scale surveys is to use interviewers from outside the community. Our results show that interviewer-respondent acquaintance is associated with a range of family planning outcomes; therefore, we recommend that the approach to hiring interviewers be examined and reconsidered in survey data collection efforts.

Encountering the Unexpected: Revelations of Trust, Vulnerability, and Embodied Ways of Knowing.

Health communication scholars grapple with complex issues, many of which probe embodied sensibilities. This essay narrates a profound, unexpected moment that gives rise to notions of trust, vulnerability, and risks involved when conducting fieldwork. The author explains how embodied interactions bring forth latent constructs pertinent to health communication research, both for investigative practices and applied purposes. Furthermore, the author questions how symbolic acts demonstrated by research participants may illuminate powerful meanings yet simultaneously pose potential dangers for researchers.

Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period.

BACKGROUND: Choosing a suitable sample size in qualitative research is an area of conceptual debate and practical uncertainty. That sample size principles, guidelines and tools have been developed to enable researchers to set, and justify the acceptability of, their sample size is an indication that the issue constitutes an important marker of the quality of qualitative research. Nevertheless, research shows that sample size sufficiency reporting is often poor, if not absent, across a range of disciplinary fields. METHODS: A systematic analysis of single-interview-per-participant designs within three health-related journals from the disciplines of psychology, sociology and medicine, over a 15-year period, was conducted to examine whether and how sample sizes were justified and how sample size was characterised and discussed by authors. Data pertinent to sample size were extracted and analysed using qualitative and quantitative analytic techniques. RESULTS: Our findings demonstrate that provision of sample size justifications in qualitative health research is limited; is not contingent on the number of interviews; and relates to the journal of publication. Defence of sample size was most frequently supported across all three journals with reference to the principle of saturation and to pragmatic considerations. Qualitative sample sizes were predominantly - and often without justification - characterised as insufficient (i.e., 'small') and discussed in the context of study limitations. Sample size insufficiency was seen to threaten the validity and generalizability of studies' results, with the latter being frequently conceived in nomothetic terms. CONCLUSIONS: We recommend, firstly, that qualitative health researchers be more transparent about evaluations of their sample size sufficiency, situating these within broader and more encompassing assessments of data adequacy. Secondly, we invite researchers critically to consider how saturation parameters found in prior methodological studies and sample size community norms might best inform, and apply to, their own project and encourage that data adequacy is best appraised with reference to features that are intrinsic to the study at hand. Finally, those reviewing papers have a vital role in supporting and encouraging transparent study-specific reporting.

A reflection on the challenges in interviewing Arab participants.

BACKGROUND: Cultural beliefs and ways of thinking need to be considered when interviewing Arab participants with chronic diseases. AIM: To provide insights into the challenges of interviewing Arab participants. DISCUSSION: This paper taps into the first author's experiences of interviewing ten Arab participants with type 2 diabetes and coexisting depression. Issues relating to gatekeeping, gender, participants' privacy and superstitious thinking need to be taken into consideration, particularly when discussing sensitive topics that may challenge social norms. These issues can influence the building of rapport, which may affect the depth of information collected. CONCLUSION: This paper offers insight and recommendations for other researchers conducting qualitative research with Arab participants. IMPLICATIONS FOR PRACTICE: Paramount in conducting qualitative studies with Arab participants are: an early, open discussion about personal space with participants and their families; matching the genders of participants and interviewers; and involving participants in the selection of pseudonyms.

Recruitment of Individuals With Dementia and Their Carers for Social Research: Lessons Learned From Nine Studies.

Many health and social care research studies report difficulties recruiting sufficient numbers of participants, adding to time and money expenditures and potentially jeopardizing the generalizability of findings. The current article reports the effectiveness and resource requirements of recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. The use of service providers to aid recruitment yielded mixed results, but was lengthy in terms of research time. Online and social media were low cost but not reliably effective in terms of recruitment potential. Despite using multiple strategies to maximize recruitment, significant challenges were encountered achieving the required sample sizes; in most cases these challenges resulted in delays in the recruitment phase. Implications for researchers in the fields of dementia and general social/health research are discussed. [Res Gerontol Nurs. 2018; 11(3):119-128.].

Unraveling the Mobilization of Memory in Research With Refugees.

In this article, we explore how narrative accounts of trauma are co-constructed through the interaction between researcher and participant. Using a narrative multiple-case study with Kurdish refugee families, we address how this process takes place, investigating how researcher and participants were engaged in relational, moral, collective, and sociopolitical dimensions of remembering, and how this led to the emergence of particular ethical questions. Case examples indicate that acknowledging the multilayered co-construction of remembering in the research relationship profoundly complicates existing deontological guidelines that predominantly emphasize the researcher's responsibility in sensitively dealing with participants' alleged autobiographical trauma narratives. Instead, our analysis invites qualitative researchers to engage in a continued, context-specific ethical reflection on the potential risks and benefits that are invoked in studies with survivors of collective violence.