Off-label, off-limits? Parental awareness and attitudes towards off-label use in paediatrics.
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ABSTRACT:
SUBMITTER: Lenk C
PROVIDER: S-EPMC2772947 | biostudies-other | 2009 Dec
REPOSITORIES: biostudies-other
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Project description:BACKGROUND:Public awareness and engagement are among the main prerequisites for protecting the rights of research participants and for successful and sustainable functioning of research biobanks. The aim of our study was to analyse public awareness and attitudes towards research biobanks in Latvia, and to compare these data with the results of the 2010 Eurobarometer study. We also analysed the influence of awareness and attitudes towards biobanks on willingness to participate in biobank studies and on preferred type of informed consent. METHODS:We developed a 12-question survey repeating seven questions about biobanks from the 2010 Eurobarometer questionnaire and adding five others. After describing the study variables, we performed a two-stage analysis of the results. In the first stage we analysed differences between the answers from 2010 and 2019 and conducted univariate analyses of relationships among particular variables, and between those variables and the socio-demographic characteristics of participants. In the second stage we investigated multivariable associations of willingness to participate and type of consent with awareness, trust and the socio-economic characteristics of participants. RESULTS:According to our study, the general public in Latvia is still not well informed about research biobanks. Fewer respondents have heard about research biobanks than in 2010. At the same time, the number of respondents who are willing to donate biological samples and personal data to a biobank has increased, e.g. the number of respondents who would definitely or probably be willing to provide information about themselves has increased from 25.8.% to 40.7 since 2010. Overall, concerns about the donation of different types of biological samples and data to a biobank have slightly decreased. CONCLUSIONS:Public awareness about biobanks is important for their sustainability. It needs to be increased not only by traditional methods of informing the public, but also by more innovative and participatory approaches, e.g. by citizen science projects. There is a need to strengthen the public visibility and trustworthiness of ethics committees in Latvia in the field of biobanking.
| S-EPMC7393882 | biostudies-literature
Project description:Screening for colorectal cancer (CRC) provides an effective strategy for early detection and prevention of the disease; however, global screening rates are still low. This study aims at assessing the awareness of CRC risk factors, warning signs, and attitudes towards CRC guidelines and screening modalities, in order to identify the barriers to and correlates of CRC screening in the Lebanese population. A self-administered questionnaire was distributed to 371 participants in the largest health care medical center in Lebanon. A validated 12- and 9-item Cancer Awareness Measurement questionnaire was used to assess participants' awareness of CRC risk factors and warning signs. 83% and 67% of participants were not aware of CRC risk factors and warning signs, respectively, 15% have previously undergone CRC screening, 56% were aware of the necessity for screening, and 43% were willing to undergo screening. Factors affecting awareness of the necessity for CRC screening, past screening and willingness to screen included awareness of risk factors and warning signs, undergoing regular physician check-ups, having a family physician as a primary source of knowledge of CRC, and knowing a family member or friend diagnosed with CRC. Barriers to screening were related to participants' evaluation of the screening technique and misconceptions about this disease. Serious active measures should be taken by health care sectors, authoritative groups, primary care physicians, and awareness campaigns to fill the gap in awareness of this disease and to alleviate the barriers and misconceptions around it.
| S-EPMC6634322 | biostudies-literature
Project description:To examine how parent-child relationships, parental control, and parental attitudes towards sex were related to pregnancy outcomes among adolescent mothers.Prospective cohort study. Parental report of relationship satisfaction, disapproval of adolescent having sex, discussion around sexual health, and sexual communication attitudes, and adolescent report of relationship satisfaction, parental control, and parental disapproval of sex were examined as predictors of self-reported birth outcomes. Weighted multivariable linear regression models were run incorporating interactions by race.United States.632 females who participated in Waves I and IV of the National Longitudinal Study of Adolescent Health (Add Health), a nationally-representative sample of students enrolled in grades 7-12 in 1994-95 and followed up in 2007-2008.Birthweight and gestational age.For Black adolescents, better parent-child relationship was associated with higher birthweight (0.14 kg, P < .05) and gestational age (0.75 weeks, P < .01), while higher parental disapproval of having sex (adjusted beta 0.15 kg, P < .05) were associated with higher birthweight. For non-Black adolescents, a moderate amount of discussion of birth control was associated with higher birthweight (0.19 kg, P < .01 and lower child-perceived parental disapproval of having sex was associated with higher birthweight (0.08 kg, P < .05) and gestational age (0.37 weeks, P < .05). Higher parental control was associated with a reduced likelihood of smoking during pregnancy and a greater likelihood of early prenatal care.Parent-child relationships and attitudes about sex affect outcomes of pregnant adolescents.
| S-EPMC4160400 | biostudies-literature
Project description:BackgroundOut-of-hospital cardiac arrest is a major cause of mortality worldwide. When basic life support techniques are implemented quickly, the chance of survival is doubled. Therefore, this study evaluated public awareness, knowledge and attitudes towards basic life support in Jordan.MethodsA descriptive, cross-sectional design with a convenience sample of 300 Jordanian adults aged over 18 years, recruited from three metropolitan areas in the northern, middle and southern regions.ResultsA total of 87 participants (29%) stated that they have received training about cardiopulmonary resuscitation (CPR). Among them, 20 participants (23%) received their training through the media. The highest response rate for cardiac arrest signs was chest pain (n?=?129, 43%). Participants who received training had greater knowledge of the three signs of consciousness evaluation. The numbers of participants who received training and performed chest compression, mouth-to-mouth ventilation, and both compression and ventilation were higher than those who did not receive training. Overall, 256 participants (88.3%) reported that they would perform CPR on someone from their family without hesitation. The most important concern about performing CPR was making a mistake.ConclusionsImproving knowledge about cardiopulmonary resuscitation is an important topic, which can be achieved by training the general population. Media can play an important role in this issue.
| S-EPMC6206630 | biostudies-literature
Project description:BackgroundHelmets prevent head trauma in both all-terrain vehicle (ATV) and bicycle crashes. This pilot study's objective was to compare family helmet use and participant attitudes regarding helmets for ATVs versus bicycles.MethodsA convenience sampling of adults attending a 2017 university-sponsored health fair who had at least one child <?18?years living at home were surveyed. Demographics, frequency of helmet use, and information about factors influencing helmet use were collected. Descriptive (frequencies) and bivariate (Fisher's exact test) analyses were performed. Qualitative themes of written responses were also examined.ResultsSubjects (N?=?98) were 26-57?years old (mean 40?years). Three-quarters (76%) were female. The percentage always wearing a helmet riding bicycles was 63% (subjects), 58% (spouses/partners), and 51% (children), compared to 11, 14 and 37% on ATVs, respectively. Moreover, the percentage never wearing a helmet while on an ATV was 68% for subjects, 71% for spouses, and 47% for children. Despite helmet use differences between bicycles and ATVs, the importance of children wearing a helmet on these vehicles was rated highly and equally important, 9.28 and 9.58 on a 1-10 scale, respectively. Higher proportions of subjects' oldest children wore a bike helmet 100% of the time if at least one parent always wore a helmet (81%), compared to children whose parents both wore helmets <?100% of the time or didn't ride (21%) (p?<?0.0001). The proportion of children wearing ATV and bicycle helmets less than 100% of the time was significantly higher if parents reported barriers to effectively enforcing helmet use than if they did not (p?=?0.04 and p?=?0.004, respectively). Many reported a "strict no helmet, no bike/ATV riding rule" as being most effective in getting their children to always wear a helmet.ConclusionsThis study is the first to explore family helmet use while riding bicycles vs ATVs. Although parent's belief in the importance of helmet use was high for both, helmet use was greater when riding bicycles. Further research is needed to better understand the social and environmental influences that shape parental helmet attitudes and practices in order to improve safety interventions for increasing pediatric helmet use.
| S-EPMC7291627 | biostudies-literature
Project description:BackgroundTelemedicine is increasingly utilized as an alternative to in person consultation. Current pandemic conditions are providing additional impetus to virtual care delivery. We compared both adolescent and caregiver (parent or guardian) attitudes towards telemedicine (here as tertiary center to remote health care location) as a crucial determinant of longer-term effectiveness.MethodsThis qualitative research study analyzed transcribed structured telephone interviews with both 11-18 year-old pediatric nephrology patients and their caregivers and performed a quantitative analysis of patient demographics, disease factors and distance to tertiary center vs. telemedicine center.ResultsThe study was conducted in a medium-sized tertiary pediatric nephrology centre with a large catchment area of over 0.5 million square kilometers and 629,000 children and adolescents under 18 years of age. Eleven dyads of adolescents and caregivers were enrolled. Five adolescents were male. The mean age of the adolescents was 14.4 ± 2.5 years (range 11.2-18.0). The median distance to our tertiary center was 191 km (range 110-1378 km). Four adolescents lived more than 500 km from our tertiary center. The 11 adolescents had a total of 334 in person visits (mean 30 ± 25) and 86 telemedicine visits (mean 8 ± 7). A ratio of 2:1 telemedicine to in-person visits was favored; with caregivers more in favor of remote care than adolescents. Qualitative analysis found that experiences with telemedicine were distinguished by consultation-specific factors and contextual factors. Contextual factors (travel/cost savings) were valued for telemedicine by adolescents and caregivers. Consultation-specific factors, such as the ability to show the doctor physical symptoms, were more valued during in-person consultations, especially by adolescents. The overall visit type preference was related to the nature of the consultation. For regular check-ups, and for adolescents with less complex needs, participants felt that telemedicine offered a comparable experience to in-person visits. Adolescents with more complex conditions preferred in-person visits.ConclusionsIndiscriminate transfer to chronic care predicated on mainly telemedicine approach is not compatible with user expressed attitudes (especially among adolescents). Accurately mapping models of care to these attitudes is an essential determinant of effective management and longer-term engagement with potentially life-long health challenges.
| S-EPMC8169397 | biostudies-literature
Project description:ObjectiveTo describe contraceptive use and attitudes towards contraceptive use in Sweden which has the highest abortion rate in Western Europe. Secondary objectives were to investigate knowledge of contraceptive methods and outcomes of unplanned and unwanted pregnancies.DesignTelephone survey.SettingNational survey of women living in Sweden.PopulationWomen between 16 and 49 years.MethodsThe survey contained 22 questions with free text and multi choice answers on demographics, contraceptive use, knowledge of and attitudes towards contraception, the importance of monthly bleeding and experience of unintended pregnancy.Main outcome measuresDistribution of use of contraceptive methods and non-use of contraception among Swedish women. Prevalence and outcome of unintended pregnancies.ResultsA total of 1001 women participated in the survey. Of all women, 721/1001 (72.1%) currently used contraception whereas 268/1001 (26.8%) women did not. Long acting reversible contraception, (LARC; implant and intra uterine contraception) was used by 24.3% of women. The unmet need of contraception in Sweden was estimated at 8.9% (89/1001 women). A total of 781 (78%) women had never experienced an unintended pregnancy whereas 220 (22%) women had had at least one unintended pregnancy. Users and non-users alike stated that one of the most important characteristics of a contraceptive method is its effectiveness.ConclusionsSweden has a large unmet need for contraception. Furthermore, a large proportion of women have experienced at least one unintended pregnancy. Increasing contraceptive use and promotion of LARC is a possible way forward in the effort to reduce the rates of unwanted pregnancies.
| S-EPMC4439158 | biostudies-literature
Project description:BackgroundGenetic testing for risk of hereditary cancer can help patients to make important decisions about prevention or early detection. US and UK studies show that people from ethnic minority groups are less likely to receive genetic testing. It is important to understand various groups' awareness of genetic testing and its acceptability to avoid further disparities in health care. This review aims to identify and detail awareness, knowledge, perceptions, and attitudes towards genetic counselling/testing for cancer risk prediction in ethnic minority groups.MethodsA search was carried out in PsycInfo, CINAHL, Embase and MEDLINE. Search terms referred to ethnicity, genetic testing/counselling, cancer, awareness, knowledge, attitudes, and perceptions. Quantitative and qualitative studies, written in English, and published between 2000 and 2015, were included.ResultsForty-one studies were selected for review: 39 from the US, and two from Australia. Results revealed low awareness and knowledge of genetic counselling/testing for cancer susceptibility amongst ethnic minority groups including African Americans, Asian Americans, and Hispanics. Attitudes towards genetic testing were generally positive; perceived benefits included positive implications for personal health and being able to inform family. However, negative attitudes were also evident, particularly the anticipated emotional impact of test results, and concerns about confidentiality, stigma, and discrimination. Chinese Australian groups were less studied, but of interest was a finding from qualitative research indicating that different views of who close family members are could impact on reported family history of cancer, which could in turn impact a risk assessment.ConclusionInterventions are needed to increase awareness and knowledge of genetic testing for cancer risk and to reduce the perceived stigma and taboo surrounding the topic of cancer in ethnic minority groups. More detailed research is needed in countries other than the US and across a broader spectrum of ethnic minority groups to develop effective culturally sensitive approaches for cancer prevention.
| S-EPMC5445407 | biostudies-literature
Project description:BackgroundIn Zambia, human anthrax cases often occur following cases of animal anthrax. Human behaviour has been implicated in this transmission. The objective of the study was to explore human behavioural patterns that may contribute to outbreaks of anthrax among affected communities.MethodsA mixed methods study was conducted in four districts of Zambia from November 2015 to February 2016. A cross sectional survey involving 1,127 respondents, six focus group discussions and seven key informant interviews with professional staff were conducted. Descriptive statistics on socio-demographic characteristics, awareness of anthrax, attitudes towards cattle vaccination and risk factors for anthrax and vaccination practices were run using STATA 12 for analysis.ResultsOverall, 88% of respondents heard about anthrax, 85.1% were aware that anthrax is transmitted by eating infected meat and 64.2% knew that animals and humans can be infected with anthrax. However, qualitative data suggested that awareness of anthrax varied across communities. Qualitative findings also indicated that, in Western and Muchinga provinces, human anthrax was transmitted by eating infected beef and hippo (Hippopotamus amphibious) meat, respectively. Although survey data indicated that 62.2% of respondents vaccinated their animals, qualitative interviews and annual vaccination reports indicated low vaccination rates, which were attributed to inadequate veterinary service provision and logistical challenges. While 82% of respondents indicated that they reported animal deaths to veterinary officers, only 13.5% of respondents buried infected carcasses. Majority (78.1%) of respondents either ate, sold or shared meat from dead animals with other community members. Poverty, lack of access to meat protein and economic reasons were cited as drivers for consuming infected meat.ConclusionsHealth education campaigns must be intensified to reduce the risk of human exposure. Veterinary extension services should be strengthened and cold chain facilities decentralized in order to improve accessibility to anthrax vaccine. It is also important to involve the affected communities and collaborate with other disciplines in order to effectively tackle poverty, improve veterinary services and address inherent meat consumption practices within the communities.
| S-EPMC5443538 | biostudies-literature
Project description:BackgroundHealth information exchange (HIE), the electronic transmission of patient medical information across healthcare institutions, is on the forefront of the national agenda for healthcare reform. As healthcare consumers are critical participants in HIE, understanding their attitudes toward HIE is essential.ObjectiveTo determine healthcare consumers' attitudes toward physician and personal use of HIE, and factors associated with their attitudes.DesignCross-sectional telephone survey.ParticipantsEnglish-speaking residents of the Hudson Valley of New York.Main measureConsumer reported attitudes towards HIE.Key resultsOf 199 eligible residents contacted, 170 (85%) completed the survey: 67% supported physician HIE use and 58% reported interest in using HIE themselves. Multivariate analysis suggested supporters of physician HIE were more likely to be caregivers for chronically ill individuals (OR 4.6, 95% CI 1.06, 19.6), earn more than $100,000 yearly (OR 3.5, 95% CI 1.2, 10.0), and believe physician HIE would improve the privacy and security of their medical records (OR 2.9, 95% CI 1.05, 7.9). Respondents interested in using personal HIE were less likely to be female (OR 0.4, 95% CI 0.1, 0.98), and more likely to be frequent Internet-users (OR 3.3, 95% CI 1.03, 10.6), feel communication among their physicians was inadequate (OR 6.7, 95% CI 1.7, 25.3), and believe personal HIE use would improve communication with their physicians (OR 4.7, 95% CI 1.7, 12.8).ConclusionsConsumer outreach to gain further support for ongoing personal and physician HIE efforts is needed and should address consumer security concerns and potential disparities in HIE acceptance and use.
| S-EPMC3157531 | biostudies-literature