Dataset Information

Perception and Demands of Pregnant and Breastfeeding Women Regarding Their Role as Participants in Environmental Research Studies.

ABSTRACT: A significant proportion of scientific studies consider pregnant and breastfeeding women as vulnerable subjects. The objective of this study was to analyse the perception of pregnant and breastfeeding women regarding their participation in environmental research studies. Our work is a descriptive and interpretative observational study that has been developed under the qualitative research paradigm following a phenomenological and ethnographic perspective. The study involved 173 women selected intentionally in two Spanish autonomous communities. To obtain the primary data, we relied upon 111 interviews, four focused ethnographies and eight focus groups. The data encoding and analysis was carried out with the help of NVivo 12 software (QSR International, Boston, MA, USA). We evidenced the need of pregnant and breastfeeding women for more detailed and accurate information on the risk of environmental pollutant exposure during their crucial life stage. In addition, these women claimed for a more participatory role in research studies. Pregnant and breastfeeding women in Spain ask for greater interaction with researchers and propose a dialogical relationship between valid partners. We conclude that our pregnant and breastfeeding women claim more research focused on their collective, as well as clearer, more accessible and structured information on the risks of exposure to environmental contaminants. In addition, they do not want to simply be informants; rather, they ask to be active and empowered members by providing their opinions and arguments throughout the research process.

SUBMITTER: Company-Morales M

PROVIDER: S-EPMC8070940 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Results of Alzheimer disease (AD) research assessments typically are not disclosed to participants. Recent research has suggested interest in disclosure, but, to our knowledge, few studies have accounted for awareness of potential benefits and limitations of disclosure.To determine the attitudes of cognitively normal research participants and members of the general public regarding disclosure of AD research results.Participants in a longitudinal aging study (Alzheimer Disease Research Center [ADRC]) were given preintervention and postintervention surveys about disclosure attitudes. In a general public sample (The American Panel Survey), participants responded to a similar survey about disclosure attitudes.Participants in the ADRC sample were randomly assigned to a group (n = 119) that read an education intervention about the usefulness of AD biomarkers or to a placebo group (n = 100) that read as its intervention general information about the ADRC. Participants in the general public sample read a brief vignette describing participation in a longitudinal AD study.Interest in disclosure of AD research results.Cognitively normal ADRC participants (n = 219) were 60.7% (n = 133) female, 83.6% (n = 183) of white race, and reported a mean of 15.91 years of education. Twenty-nine individuals refused participation. The American Panel Survey participants (n = 1418) indicated they did not have AD and were 50.5% (n = 716) female, 76.7% (n = 1087) of white race, and reported a mean of 13.85 years of education. Overall, 77.6% of eligible participants (1583 of 2041) completed the survey in July 2014. Interest in disclosure was high among the ADRC participants (55.1% [119 of 216] were "extremely interested"). Viewing the education intervention predicted lower interest in disclosure (odds ratio, 2.01; 95% CI, 1.15-3.53; P =?.02). High subjective risk of AD, a family history of AD, and minimal attendance at research meetings were associated with high interest after the intervention. In the general public, interest was lower overall (12.5% [174 of 1389] were "extremely interested"), but the subset of participants most likely to join an AD research study reported higher interest (43.5% [40 of 92] were extremely interested).Experience with AD appears to increase interest in disclosure of AD research results. Learning about potential limitations of disclosure somewhat tempered interest. These findings should inform the development of disclosure policies for asymptomatic individuals in AD studies.

Dataset Information

Perception and Demands of Pregnant and Breastfeeding Women Regarding Their Role as Participants in Environmental Research Studies.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets