Fear and discomfort of children and adolescents during MRI: ethical consideration on research MRIs in children.
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ABSTRACT:
SUBMITTER: Everts R
PROVIDER: S-EPMC9064788 | biostudies-literature | 2022 Mar
REPOSITORIES: biostudies-literature
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Fear and discomfort of children and adolescents during MRI: ethical consideration on research MRIs in children.
Everts Regula R Muri Raphaela R Leibundgut Kurt K Siegwart Valerie V Wiest Roland R Steinlin Maja M
Pediatric research 20210420 4
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Project description:While increased attention has been given to girls' menstrual hygiene management (MHM) experiences in schools as they relate to managerial challenges, research exploring girls' psychosocial experiences during menstruation and their needs in non-school environments remains limited. This study investigates the knowledge, attitudes, and practices regarding menstruation and MHM (M&MHM) among rural Cambodian girls (at least 14 years old, post-menarche; n = 130), mothers (n = 93), fathers (n = 15), teachers (n = 37; 54.1% female), and boys (at least 14 years old; n = 59) in both the home and school environments. Qualitative and quantitative data were collected through structured interviews, focus groups, and latrine surveys in eight secondary schools and villages from two rural provinces, Banteay Meanchey and Kratie. Findings indicated that although 95% of girls felt capable of managing their menses each month, many girls experienced fear, shyness, and discomfort (FSD) during menstruation. Identified M&MHM challenges and FSD in both the home and school environments influenced all participant groups' decision-making, social interactions, and varied based on their knowledge of M&MHM and emphasized the need for comprehensive interventions that reduce the impact of MHM challenges on psychosocial experiences and FSD to promote girls' well-being during menstruation, particularly in income limited settings.
| S-EPMC10022126 | biostudies-literature
Project description:BackgroundThe past 20 years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children's and adolescents' experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population.AimsThe objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives.MethodsThis systematic review was conducted per the Long, Godfrey, Randall, Brettle, and Grant framework by means of an iterative searching process. Using the key words "research ethics" and "child or pediatric or adolescent," PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the searches were: English language, year of publication between 2003 and 2014, humans, abstract available, and age birth-18 years.FindingsTwenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals.Linking evidence to actionEven young children demonstrated the ability to understand essential elements of research, although there is variability in children's level of understanding. Trust was a significant contributing factor to children's and adolescents' participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed.
| S-EPMC5724520 | biostudies-literature
Project description:BackgroundInvolvement of adolescent girls in biomedical HIV research is essential to better understand efficacy and safety of new prevention interventions in this key population at high risk of HIV infection. However, there are many ethical issues to consider prior to engaging them in pivotal biomedical research. In Uganda, 16-17-year-old adolescents can access sexual and reproductive health services including for HIV or other sexually transmitted infections, contraception, and antenatal care without parental consent. In contrast, participation in HIV prevention research involving investigational new drugs requires adolescents to have parental or guardian consent. Thus, privacy and confidentiality concerns may deter adolescent participation. We describe community perspectives on ethical considerations for involving adolescent girls in the MTN 034 study in Uganda.MethodsFrom August 2017 to March 2018, we held five stakeholder engagement meetings in preparation for the MTN 034 study in Kampala, Uganda (NCT03593655): two with 140 community representatives, two with 125 adolescents, and one with 50 adolescents and parents. Discussions were moderated by the study team. Proceedings were documented by notetakers. Summary notes described community perspectives of adolescent participation in HIV research including convergent, divergent or minority views, challenges, and proposed solutions.ResultsMost community members perceived parental or guardian consent as a principal barrier to study participation due to concerns about adolescent disclosure of pre-marital sex, which is a cultural taboo. Of 125 adolescent participants, 119 (95%) feared inadvertent disclosure of sexual activity to their parents. Community stakeholders identified the following critical considerations for ethical involvement of adolescents in HIV biomedical research: (1) involving key stakeholders in recruitment, (2) ensuring confidentiality of sensitive information about adolescent sexual activity, (3) informing adolescents about information to be disclosed to parents or guardians, (4) offering youth friendly services by appropriately trained staff, and (5) partnering with community youth organizations to maximize recruitment and retention.ConclusionsStakeholder engagement with diverse community representatives prior to conducting adolescent HIV prevention research is critical to collectively shaping the research agenda, successfully recruiting and retaining adolescents in HIV clinical trials and identifying practical strategies to ensure high ethical standards during trial implementation.
| S-EPMC8461968 | biostudies-literature
Project description:There is increasing interest in the need to address the ethical dilemmas related to the engagement of adolescents in sexual and reproductive health (SRH) research. Research projects, including those that address issues related to STIs and HIV, adverse pregnancy outcomes, violence, and mental health, must be designed and implemented to address the needs of adolescents. Decisions on when an individual has adequate capacity to give consent for research most commonly use age as a surrogate rather than directly assessing capacity to understand the issues and make an informed decision on whether to participate in research or not. There is a perception that adolescents participating in research are more likely to be coerced and may therefore not fully comprehend the risk they may be taking when engaging in research. This paper examines the various ethical issues that may impact stakeholders' decision making when considering engaging adolescents in SRH research in Nigeria. It makes a case for lowering the age of consent for adolescents. While some experts believe it is possible to extrapolate relevant information from adult research, studies on ethical aspects of adolescents' participation in research are still needed, especially in the field of sexual and reproductive health where there are often differences in knowledge, attitudes and practices compared to adults. The particular challenges of applying the fundamental principles of research ethics to adolescent research, especially research about sex and sexuality, will only become clear if more studies are conducted.
| S-EPMC4600029 | biostudies-other
Project description:Past results suggest that fear extinction and the return of extinguished fear are compromised in adolescents. However, findings have been inconclusive as there is a lack of fear extinction and extinction retention studies including children, adolescents and adults. In the present study, 36 children (6-9 years), 40 adolescents (13-17 years) and 44 adults (30-40 years), underwent a two-day fear conditioning task. Habituation, acquisition, and extinction were performed on the first day and an extinction retention test > 24 h later. Skin conductance responses were recorded during all phases of fear conditioning and functional magnetic resonance imaging (fMRI) was conducted during the fear retention test. All groups acquired and extinguished fear as measured with SCR, with no group differences in SCR during extinction retention. The groups had largely similar neural fear responses during the retention test, apart from adolescents displaying stronger amygdala fear response than children, with no differences between adolescents and adults. The findings do not support an adolescent extinction dip, and there was only marginal evidence of progressive changes in fear conditioning across development. In contrast to findings in rodents, fear conditioning in humans may elicit similar physiological responses and recruit similar neural networks from childhood to adulthood.
| S-EPMC11773086 | biostudies-literature
Project description: Not available
| S-EPMC7543960 | biostudies-literature
Project description:ObjectiveThe evaluation of discomfort in paediatric research is scarcely evidence-based. In this study, we make a start in describing children's self-reported discomfort during common medical research procedures and compare this with discomfort during dental check-ups which can be considered as a reference level of a 'minimal discomfort' medical procedure. We exploratory study whether there are associations between age, anxiety-proneness, gender, medical condition, previous experiences and discomfort. We also describe children's suggestions for reducing discomfort.DesignCross-sectional descriptive study.SettingPaediatric research at three academic hospitals.Patients357 children with and without illnesses (8-18 years, mean=10.6 years) were enrolled: 307 from paediatric research studies and 50 from dental care.Main outcome measuresWe measured various generic forms of discomfort (nervousness, annoyance, pain, fright, boredom, tiredness) due to six common research procedures: buccal swabs, MRI scans, pulmonary function tests, skin prick tests, ultrasound imaging and venepunctures.ResultsMost children reported limited discomfort during the research procedures (means: 1-2.6 on a scale from 1 to 5). Compared with dental check-ups, buccal swab tests, skin prick tests and ultrasound imaging were less discomforting, while MRI scans, venepunctures and pulmonary function tests caused a similar degree of discomfort. 60.3% of the children suggested providing distraction by showing movies to reduce discomfort. The exploratory analyses suggested a positive association between anxiety-proneness and discomfort.ConclusionsThe findings of this study support the acceptability of participation of children in the studied research procedures, which stimulates evidence-based research practice. Furthermore, the present study can be considered as a first step in providing benchmarks for discomfort of procedures in paediatric research.
| S-EPMC5642655 | biostudies-literature
Project description:Seclusion was widely used in mental health service, which had caused various negative effects on patients and nurses. In China, the clinical use of seclusion was gradually increasing, which had led to ethical dilemma and had gained public concern. This article aimed to synthesize the ethical issue according to the principle of autonomy, justice, beneficence, and non-maleficence. Given that nursing workforce was limited and work burden among psychiatric nurses was heavy, seclusion was one of coercive interventions managing aggressive behavior. In relation to cope with ethical dilemma, it was proposed to improve therapeutic environment, and to apply de-escalation technique. Additionally, reducing clinical use and adverse effects of seclusion was also important, this goal would be achieved by building appropriate patient-nurse relationship, increasing staff engagement, and promoting guideline of seclusion.
| S-EPMC7031114 | biostudies-literature
Project description:Alterations in learning processes and the neural circuitry that supports fear conditioning and extinction represent mechanisms through which trauma exposure might influence risk for psychopathology. Few studies examine how trauma or neural structure relates to fear conditioning in children. Children (n=94) aged 6-18 years, 40.4% (n=38) with exposure to maltreatment (physical abuse, sexual abuse, or domestic violence), completed a fear conditioning paradigm utilizing blue and yellow bells as conditioned stimuli (CS+/CS-) and an aversive alarm noise as the unconditioned stimulus. Skin conductance responses (SCR) and self-reported fear were acquired. Magnetic resonance imaging data were acquired from 60 children. Children without maltreatment exposure exhibited strong differential conditioning to the CS+ vs CS-, based on SCR and self-reported fear. In contrast, maltreated children exhibited blunted SCR to the CS+ and failed to exhibit differential SCR to the CS+ vs CS- during early conditioning. Amygdala and hippocampal volume were reduced among children with maltreatment exposure and were negatively associated with SCR to the CS+ during early conditioning in the total sample, although these associations were negative only among non-maltreated children and were positive among maltreated children. The association of maltreatment with externalizing psychopathology was mediated by this perturbed pattern of fear conditioning. Child maltreatment is associated with failure to discriminate between threat and safety cues during fear conditioning in children. Poor threat-safety discrimination might reflect either enhanced fear generalization or a deficit in associative learning, which may in turn represent a central mechanism underlying the development of maltreatment-related externalizing psychopathology in children.
| S-EPMC4908632 | biostudies-literature
Project description:Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify traditional in-person research to virtually delivered activities and still adhere to healthcare ethical principles of beneficence, justice, and respect for persons. Our objective is to describe ethical considerations faced by nurse investigators who modified research conducted in pediatric oncology during the COVID-19 pandemic. Methods Review of research case examples. Results Two research study case examples are presented, including remote-participant recruitment via Facebook advertising and a virtually delivered web-based legacy intervention in a pediatric oncology randomized clinical trial. Challenges to modifying in-person approaches to remote strategies are also discussed, with examples of advantages and disadvantages presented from a study testing a human-animal interaction intervention for children with cancer. Discussion Our case information may assist other investigators in planning virtually delivered behavioral strategies for populations that may prefer the convenience of remote participation in research studies because of multiple family responsibilities in the care of a family member, during the pandemic and after. As researchers understand more about subjects' preferences to receive protocol activities (i.e., virtual vs. in-person delivery), they may be able to reduce risks of being unable to collect data because eligible subjects declined or withdrew from a study due to multiple-home responsibilities during the care of a family member with a serious or life-limiting condition.
| S-EPMC9022959 | biostudies-literature