Dataset Information

Effect of child health status on parents' allowing children to participate in pediatric research.

ABSTRACT:

Background

To identify motivational factors linked to child health status that affected the likelihood of parents' allowing their child to participate in pediatric research.

Methods

Parents were invited to return their completed questionnaires anonymously to assess motivational factors and factors that might improve participation in pediatric research.

Results

Of 573 eligible parents, 261 returned the completed questionnaires. Of these, 126 were parents of healthy children (group 1), whereas 135 were parents of sick children who were divided into two groups according to the severity of their pathology, i.e., 99 ambulatory children (group 2) and 36 nonambulatory children (group 3). The main factor motivating participation in a pediatric clinical research study was "direct benefits for their child" (87.7%, 100%, and 100% for groups 1, 2, and 3, respectively). The other factors differed significantly between the three groups, depending on the child's health status (all p < 0.05). Factors that might have a positive impact on parental consent to the participation of their child in a pediatric clinical research study differed significantly (?2 test, all p ? 0.04), depending on the child's health status. The main factor was "a better understanding of the study and its regulation" for the healthy children and ambulatory sick children groups (31.2% and 82.1%, respectively), whereas this was the third factor for the nonambulatory sick children group (50%).

Conclusions

Innovative strategies should be developed based on a child's health status to improve information provision when seeking a child's participation in pediatric research. Parents would like to spend more time in discussions with investigators.

SUBMITTER: Vanhelst J

PROVIDER: S-EPMC3582492 | biostudies-literature | 2013 Feb

REPOSITORIES: biostudies-literature

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Publications

Effect of child health status on parents' allowing children to participate in pediatric research.

Vanhelst Jérémy J Hardy Ludovic L Bert Dina D Duhem Stéphane S Coopman Stéphanie S Libersa Christian C Deplanque Dominique D Gottrand Frédéric F Béghin Laurent L

BMC medical ethics 20130215

<h4>Background</h4>To identify motivational factors linked to child health status that affected the likelihood of parents' allowing their child to participate in pediatric research.<h4>Methods</h4>Parents were invited to return their completed questionnaires anonymously to assess motivational factors and factors that might improve participation in pediatric research.<h4>Results</h4>Of 573 eligible parents, 261 returned the completed questionnaires. Of these, 126 were parents of healthy children ...[more]

PMID: 23414421

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Project description:UnlabelledInformation on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a "guinea pig" and fear of risks were most mentioned as discouraging factors by children.ConclusionPaying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent.What is known• This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research. • The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary. What is new: • This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents.

Project description:BackgroundWith the rapid growth of technology and its improved accessibility globally, social media is gaining an increasingly important role in health care. Patients are frequently engaging with social media to access information, share content, and interact with others in online health communities. However, the use of social media as a stakeholder engagement strategy has been minimally explored, and effective methods for involving participants in research on the identification of patient-centered outcomes remain unknown.ObjectiveThe aim of this study was to evaluate the process of using social media to engage parents in identifying patient-centered outcomes, using acute respiratory infections in children as an example to gauge feasibility.MethodsWe conducted a process evaluation of a two-phase Web-based strategy to engage parents in research on patient-centered outcomes. In the first phase, we developed a website and study-specific Facebook and Twitter accounts to recruit parents to complete a Web-based survey identifying patient-centered outcomes. In the second phase, we used Facebook to host discussion with parents based on the survey results. The reach of social media as an engagement strategy and the characteristics of the population recruited were assessed.ResultsDuring the first phase, there were 5027 visits to the survey site, 110 participants completed the survey, 553 unique users visited the study website (675 visits), the Facebook page received 104 likes, and the Twitter account gained 52 followers over the 14-week study period. Most survey respondents identified Facebook (51.8%, 57/110) or a friend (45.5%, 50/110) as their source of referral. It was found that 70.0% (77/110) of respondents resided in Canada, in urban centers (92.7%, 102/110), and 88.2% (97/110) had a college or university degree or higher. The median year of birth was 1978 and 90.0% (99/110) were female. Most survey responses (88.2%, 97/110) were completed during the first month of the study. In the second phase, 4 parents participated in the discussion, our Facebook page gained 43 followers, and our posts reached 5866 users. Mirroring the first phase, most followers were female (79%, 34/43), between 35 and 44 years (49%, 21/43), and resided in Canada (98%, 42/43). User engagement was variable, with no clear patterns emerging in timing, topic, or type of post.ConclusionsMost participants were highly educated, urban dwelling, and female, limiting diversity and representativeness. The source of referral for most survey respondents was through Facebook or a friend, suggesting the importance of personal connections in the dissemination and uptake of information. User engagement with the Facebook-based discussion threads was inconsistent and difficult to initiate. Although there is substantial interest in the use of social media as a component of an effective patient engagement strategy, challenges regarding participant engagement, representativeness, obtaining buy-in, and resources required must be carefully considered.

Dataset Information

Effect of child health status on parents' allowing children to participate in pediatric research.

Background

Methods

Results

Conclusions

Publications

Effect of child health status on parents' allowing children to participate in pediatric research.

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