Infant hearing screening: route to informed choice. (33/200)

The decision to participate in infant screening often rests with parents. Medical ethics require that parental decision is elicited from informed choice. Such a decision is influenced by the parental knowledge and attitude towards screening and a careful evaluation of these factors is essential in seeking informed consent for infant hearing screening.  (+info)

Exemptions to school immunization requirements: the role of school-level requirements, policies, and procedures. (34/200)

OBJECTIVES: Our goal was to determine whether school-level variability in implementation of immunization requirements is associated with the likelihood of a child having received an exemption to school immunization requirements. METHODS: We surveyed 1000 school immunization personnel in Colorado, Massachusetts, Missouri, and Washington. We explored associations between school implementation of immunization requirements and the likelihood of a child having an exemption using logistic regression models. RESULTS: School policies associated with an increased likelihood of children having exemptions included lack of provision of written instructions for completing the school immunization requirement before enrollment, administrative procedures making it easier to claim an exemption, and granting of philosophical exemptions. In the 2 states we surveyed where philosophical exemptions are not authorized (Massachusetts and Missouri), 17.0% and 18.1% of schools reported permitting philosophical exemptions. CONCLUSIONS: Inconsistencies in the interpretation and implementation of school immunization laws contribute to variability in rates of exemptions. School policies should be reviewed to ensure consistency with the intent of state laws.  (+info)

Persistence of effects of the Checkpoints program on parental restrictions of teen driving privileges. (35/200)

OBJECTIVES: We describe intervention effects on parent limits on novice teenage driving. METHODS: We recruited parents and their 16-year-old children (n = 469) with learner's permits and randomized them from August 2000 to March 2003. Intervention families received persuasive newsletters related to high-risk teenage driving and a parent-teenager driving agreement; comparison families received standard information on driver safety. We conducted interviews when the adolescents obtained a learner's permit, upon licensure, and at 3, 6, and 12 months postlicensure. RESULTS: Intervention parents and teenagers reported stricter limits on teen driving compared with the comparison group at 12 months, with direct effects through 3 months and indirect effects through 12 months postlicensure. CONCLUSIONS: A simple behavioral intervention was efficacious in increasing parental restriction of high-risk teen driving conditions among newly licensed drivers.  (+info)

Postnatal human immunodeficiency virus antibody testing. The effects of current policy on infant care and maternal informed consent. (36/200)

Routine human immunodeficiency virus (HIV) antibody screening of umbilical cord blood identifies neonates at risk for HIV infection but may hold risks as well as benefits for infants and mothers. We describe the effect of testing on infant placement and care and report the women's understanding of pretest counseling and consent. In a case-control analysis of 327 tested infants, seropositive infants (13) had a higher rate of discharge to home (62%) than did controls (31%). More case infants (100%) received follow-up care and vaccinations than control infants (46%). Of 32 women interviewed after HIV antibody test informed consent, only 31% understood that a positive cord blood test result was inconclusive for the infant, and most (78%) did not identify any associated socioeconomic risks. Most (88%) stated an interest in learning their serostatus, but only 22% returned for test results. Despite the benefits of HIV antibody testing of at-risk infants, current testing and counseling procedures inadequately inform women, limiting the testing benefits to them.  (+info)

What do parents think about enrolling their premature babies in several research studies? (37/200)

OBJECTIVE: To investigate parents' opinions about enrolling their premature baby into several research studies in the few days after birth. METHODOLOGY: A questionnaire was given to parents of premature babies in the neonatal intensive care unit who had been invited to join several studies (two to seven). RESULTS: All 50 mothers and 42 of 48 fathers completed the questionnaire independently; 28% had been asked to join two studies, 32% three, 24% four, 14% five, and 2% six studies. There were 61 babies with mean (SD) gestational age 26.9 (1.6) weeks and birth weight 877 (249) g. Nearly three quarters (71%) of the parents thought it was very good for their baby to be in a hospital that was carrying out a lot of research. Most (93%) thought that their baby would get the same or better care in a study. Only 15% thought their baby was too small for research studies. Almost all (98%) wanted to be involved in the decision about their baby joining a study. Only 22% were worried about the number of studies; 10% would not enroll their baby in any studies, but 74% were willing for their baby to join two or more studies, and 10% would enroll in all the studies. Most (94%) believed that their baby's participation would improve care of future babies. CONCLUSIONS: Most of these parents were willing to join several studies. The majority were not worried about their baby participating in the studies. The profession needs to be aware that parents are supportive of neonatal research and participation in multiple studies.  (+info)

What factors are important to parents making decisions about neonatal research? (38/200)

BACKGROUND: Although parents of neonates with congenital heart disease are often asked permission for their neonates to participate in research studies, little is known about the factors parents consider when making these decisions. OBJECTIVE: To determine the reasons for parents' decisions about participation in research studies. METHODS: Qualitative analysis of the unsolicited comments of 34 parents regarding reasons for agreeing or declining to participate in research studies. Parents' comments were offered spontaneously during interviews about clinical care decisions for neonates with congenital heart disease. RESULTS: Parents cited five types of reason for or against permitting their newborn to participate in research studies: societal benefit (n = 18), individual benefit for their infant (n = 16), risk of study participation (n = 10), perception that participation posed no harm (n = 9), and anti-experimentation views (n = 4). CONCLUSION: Addressing parental decision making in the light of these reasons could enhance the parental permission process for parents of critically ill neonates.  (+info)

Is conceiving a child to benefit another against the interests of the new child? (39/200)

Conceiving a child by way of embryo selection and tissue matching to benefit a sick sibling is generally justified on the grounds that as well as the potential to save the sick child, there is a benefit for the new baby. The new baby is selected so he or she will not have the disease suffered by the first child. It is not possible, however, to select against conditions for which there is no test and Jamie Whitaker's birth is a case where the process of in vitro fertilisation with tissue matching is viewed as being of benefit only to a third party-the sick child. Some people object to using the technology for this purpose. There are also good reasons to argue that the technology should be used to save a sick child, and that it would be morally remiss for Jamie's parents not to consent to the use of his cord blood.  (+info)

Quality of parental consent in a Ugandan malaria study. (40/200)

OBJECTIVES: We surveyed Ugandan parents who enrolled their children in a randomized pediatric malaria treatment trial to evaluate the parents' levels of understanding about the treatment trial and the quality of the parents' consents to allow their children to participate in the study. METHODS: We conducted 347 interviews immediately following enrollment at 4 Ugandan sites. RESULTS: A majority (78%) of the parents, most of whom where mothers (86%) had at most a primary school education. Of the participating mothers, a substantial percentage reported that they remembered being told about the study's purpose (77%), the required number of visits (88%), the risks involved (61%), treatment allocation (84%), and their ability to discontinue their children's participation (64%). In addition, most reported knowing the trial's purpose (80%) and the required number of visits (78%); however, only 18% could name possible side effects from the drugs being administered, and only 19% knew that children would not all be administered identical treatments. Ninety-four percent reported that they made the enrollment decision themselves, but 58% said they felt pressure to participate because of their child's illness, and 15% said they felt some type of pressure to participate from others; 41% reported knowing that they did not have to participate. CONCLUSIONS: The consent Ugandan parents provided to allow their children to participate in the malaria study was of mixed quality. Parents understood many of the study details, but they were not very aware of the risks involved or of randomization. Many parents felt that they could not have refused to participate because their child was sick and they either did not know or did not believe that their child would receive treatment outside of the study. Our results indicate that further debate is needed about informed consent in treatment studies of emergent illnesses in children.  (+info)