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"Refusal to Participate - statistics "
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Refusal of male partner responsibility and pregnancy support: prevalence, associated factors and health outcomes in a cross sectional study in Harare, Zimbabwe
by
Shamu, Patience
,
Machisa, Mercilene Tanyaradzwa
,
Shamu, Simukai
in
Abused women
,
Adolescent
,
Adult
2025
Background
The phenomenon of fathers refusing responsibility during pregnancy has not received adequate attention in African studies. This paper assesses associated factors and pregnancy-related outcomes when fathers refuse to support partners’ pregnancies and undertake parental responsibilities.
Methods
A cross-sectional survey of 15–49-year-old postnatal (1–6 weeks) women was conducted at six urban health facilities in Harare. Participants were interviewed about their male partners’ refusal to support their pregnancies and parenting, bride price payments (indicating marriage commitment), partner violence and control, alcohol abuse and family planning decision-making. Pregnancy health outcome data including antenatal care attendance, low birth weight (LBW)(< 2500 g) and postnatal depression were collected through interviews and clinic records. Multiple regression models were built to assess gender-related factors and health outcomes associated with male partners’ refusal of parenting responsibilities.
Results
Of the 2042 women interviewed, 6.4% reported partner refusal to support the pregnancy or parenting. Higher odds of partner refusal of fathering responsibility were associated with partners not paying bride price (aOR 9.31; 95% CI 1.16–74.59), violence perpetration during pregnancy (aOR 2.84; 1.28–6.23), highly controlling behaviours (aOR 4.96; 2.83–8.69), alcohol abuse (aOR 1.78; 1.05–3.02), unintended pregnancy (aOR 3.72; 1.84–7.53) and partner refusal to use contraceptives (aOR 3.64; 1.86–7.14). Women who used contraceptives (aOR 0.40; 0.23–0.71), made joint (aOR 0.30; 0.14–0.67) or individual (aOR 0.25; 0.07–0.94) pregnancy decisions were protected from partner refusal of parenting responsibility. Women’s depressive symptomatology (aOR2.64; 1.52–4.59), LBW (aOR5.30; 1.18–23.74) and partner discouragement of antenatal care attendance (aOR 3.86; 1.13–13.17) were pregnancy outcomes associated with partner refusal of parenting responsibility.
Conclusions
Male partners’ refusal to acknowledge parenting responsibility was associated with men’s abusiveness, absence of commitment to long-term relationship/marriage, gender unequal practices and negative maternal and child health outcomes. Parenting programmes must be instituted and prioritise transforming traditional gender norms to improve fathering responsibilities.
Journal Article
Informed consent instead of assent is appropriate in children from the age of twelve: Policy implications of new findings on children’s competence to consent to clinical research
by
De Vries, Martine C.
,
Meynen, Gerben
,
Van Goudoever, Johannes B.
in
Age Factors
,
Analysis
,
Biomedical Research - ethics
2015
Background
For many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.
Discussion
Although assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.
Summary
Previous research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated.
Journal Article
Non-response in a national health survey in Germany: An intersectionality-informed multilevel analysis of individual heterogeneity and discriminatory accuracy
2020
Dimensions of social location such as socioeconomic position or sex/gender are often associated with low response rates in epidemiological studies. We applied an intersectionality-informed approach to analyze non-response among population strata defined by combinations of multiple dimensions of social location and subjective health in a health survey in Germany.
We used data from the cross-sectional sample of the German Health Interview and Examination Survey for Adults (DEGS1) conducted between 2008 and 2011. Information about non-responders was available from a mailed non-responder questionnaire. Intersectional strata were constructed by combining all categories of age, sex/gender, marital status, and level of education in scenario 1. Subjective health was additionally used to construct intersectional strata in scenario 2. We applied multilevel analysis of individual heterogeneity and discriminatory accuracy (MAIHDA) to calculate measures of discriminatory accuracy, proportions of non-responders among intersectional strata, as well as stratum-specific total interaction effects (intersectional effects). Markov chain Monte Carlo methods were used to estimate multilevel logistic regression models.
Data was available for 6,534 individuals of whom 36% were non-responders. In scenario 2, we found weak discriminatory accuracy (variance partition coefficient = 3.6%) of intersectional strata, while predicted proportions of non-response ranged from 20.6% (95% credible interval (CI) 17.0%-24.9%) to 57.5% (95% CI 48.8%-66.5%) among intersectional strata. No evidence for intersectional effects was found. These results did not differ substantially between scenarios 1 and 2.
MAIHDA revealed that proportions of non-response varied widely between intersectional strata. However, poor discriminatory accuracy of intersectional strata and no evidence for intersectional effects indicate that there is no justification to exclusively target specific intersectional strata in order to increase response, but that a combination of targeted and population-based measures might be appropriate to achieve more equal representation.
Journal Article
Who says “no” to participating in stroke clinical trials and why: an observational study from the Vancouver Stroke Program
2019
Background
Successful stroke trials require adequate recruitment. In this observational study, we assessed reasons for refusal to provide informed consent in eligible patients approached for clinical trial participation at the Vancouver Stroke Program.
Methods
We assessed screening logs from four trials that were actively recruiting at our center: three randomized trials, two of which investigated different antithrombotic strategies for secondary prevention (NAVIGATE-ESUS, NCT02313909 12/2014; DATAS-II, NCT02295826 11/2014) and one that investigated surgery plus medical management versus medical management alone for primary prevention (CREST-2, NCT02089217 03/2014). The fourth study was observational and non-randomized; all participants received an external monitoring device (PROPHECY, NCT03712865 10/2018). Screening logs from June 2015 to April 2017 were reviewed retrospectively. Subsequently, we used a prospective structured case report form for screening (May 2017–March 2018). We assessed and compared refusal rates between trials, demographics of those refusing consent, and their reasons for doing so. We used descriptive statistics, chi-square and Fisher’s exact tests as appropriate for non-parametric data, and t-tests for parametric data. We examined likelihood of refusal by sex using multivariable logistic regression models including age and trial intervention as co-variables.
Results
A total of 235 patients (43% women) were approached for consent. More patients refused the surgical (59%) and antithrombotic trials (53%) compared with the non-randomized external monitoring device study (13%) (
p
< 0.001). Surgical trial refusals were primarily due to a desire for certainty in receiving a particular intervention (39%), with the majority of those patients wanting surgery. Refusals for the antithrombotic trials were mainly due to concerns with the potential side effects of the study drug (41%); refusals in the device trial were mainly due to disinterest (46%). Women refused participation more often than men (48% vs 33%). Women remained less likely to consent than men, even after adjustment for age and trial intervention (OR 0.46, 95% CI 0.26–0.82,
p
= 0.009).
Conclusions
Concern surrounding drug safety, randomization, and disinterest were the chief deterrents to enrolment; there were also differences in rates of consent by gender. A better understanding of why patients refuse participation in stroke trials may help to develop future patient-directed communication strategies to improve enrolment. Further research is required to better understand the reasons underlying gender disparities in consent rates.
Journal Article
Social Contact Networks and Disease Eradicability under Voluntary Vaccination
2009
Certain theories suggest that it should be difficult or impossible to eradicate a vaccine-preventable disease under voluntary vaccination: Herd immunity implies that the individual incentive to vaccinate disappears at high coverage levels. Historically, there have been examples of declining coverage for vaccines, such as MMR vaccine and whole-cell pertussis vaccine, that are consistent with this theory. On the other hand, smallpox was globally eradicated by 1980 despite voluntary vaccination policies in many jurisdictions. Previous modeling studies of the interplay between disease dynamics and individual vaccinating behavior have assumed that infection is transmitted in a homogeneously mixing population. By comparison, here we simulate transmission of a vaccine-preventable SEIR infection through a random, static contact network. Individuals choose whether to vaccinate based on infection risks from neighbors, and based on vaccine risks. When neighborhood size is small, rational vaccinating behavior results in rapid containment of the infection through voluntary ring vaccination. As neighborhood size increases (while the average force of infection is held constant), a threshold is reached beyond which the infection can break through partially vaccinated rings, percolating through the whole population and resulting in considerable epidemic final sizes and a large number vaccinated. The former outcome represents convergence between individually and socially optimal outcomes, whereas the latter represents their divergence, as observed in most models of individual vaccinating behavior that assume homogeneous mixing. Similar effects are observed in an extended model using smallpox-specific natural history and transmissibility assumptions. This work illustrates the significant qualitative differences between behavior-infection dynamics in discrete contact-structured populations versus continuous unstructured populations. This work also shows how disease eradicability in populations where voluntary vaccination is the primary control mechanism may depend partly on whether the disease is transmissible only to a few close social contacts or to a larger subset of the population.
Journal Article
Refusal of viral testing during the SARS-CoV-2 pandemic
2020
Widespread testing for the respiratory syndrome coronavirus-2 (SARS-CoV-2) will represent an important part of any strategy designed to safely reopen societies from lockdown. Healthcare settings have the potential to become reservoirs of infectivity, and therefore many hospital trusts are beginning to carry out routine screening of staff and patients. This could promote the effective cohorting of patients and reduce the rate of nosocomial infection. However, for various reasons, some individuals may refuse this testing. Here we highlight this as an emergent ethicolegal issue which we expect to become increasingly relevant as testing becomes ubiquitous. We explore this position from an ethical and legal perspective, determining whether refusal of testing is acceptable under UK law. Individual patients refusing testing could undermine a hospital's testing strategy; therefore clinicians and policy makers must prospectively determine the best course of action if this were to occur.
Journal Article
Understanding how, why, for whom, and under what circumstances opt-out blood-borne virus testing programmes work to increase test engagement and uptake within prison: a rapid-realist review
by
Nelson, Corey Andrew
,
Colbourn, Tim
,
Vindrola, Cecilia
in
Acquired immune deficiency syndrome
,
AIDS
,
Blood & organ donations
2019
Background
Prisons represent a unique opportunity to diagnose blood-borne viruses. Opt-out testing is receiving increasing interest, as a result of mounting evidence to suggest that the manner in which a test offer is delivered, affects test uptake. Although the effectiveness of opt-out testing within the prison setting has been established, robust explanations are required for the variation in outcomes reported.
Methods
Rapid-realist review methodology was used to synthesise the literature on prison-based opt-out testing. The review was carried out in three phases. Phase one: An expert panel provided literature relevant to the implementation of opt-out testing within the English prison estate. Unstructured searches were also conducted to identify other social programmes where “opt-out” had been used to increase uptake. Phase two: a systematic search of six peer-review and five grey literature databases was carried out to identify empirical data on opt-out testing within the prison setting. Phase three: Additional non-exhaustive searches were carried out to identify literature that reinforced emergent concepts. The development of programme theory took place with each iteration and was validated in consultation with stakeholders.
Results
Programme theory was constructed for two outcomes: the proportion of intake offered a test and the proportion offered that accepted testing. The proportion of intake offered testing was influenced by the timing of the test offer, which was often delayed due to barriers to prisoner access. The decision to accept testing was influenced by concerns about confidentiality, fear of a positive diagnosis, a prisoner’s personal interpretation of risk, discomfort with invasive procedures, trust in healthcare, and the fidelity of the opt-out offer.
Conclusions
This review identified important implementation considerations that moderate the effectiveness of opt-out testing programmes. It also highlighted a lack of appreciation for the theoretical underpinnings of opt-out programmes and tension around how to implement testing in a manner that adheres to both default theory and informed consent. It is anticipated that results will be used to inform the design and implementation of subsequent versions of these programmes, as well as catalyse further in-depth analysis into their operation within the unique context of prison.
Review registration
CRD42017068342
.
Journal Article
Participant recruitment in sensitive surveys: a comparative trial of ‘opt in’ versus ‘opt out’ approaches
by
Shlomo, Natalie
,
Addington-Hall, Julia
,
Hunt, Katherine J
in
Aged
,
Aged, 80 and over
,
Bereavement
2013
Background
Although in health services survey research we strive for a high response rate, this must be balanced against the need to recruit participants ethically and considerately, particularly in surveys with a sensitive nature. In survey research there are no established recommendations to guide recruitment approach and an ‘opt-in’ system that requires potential participants to request a copy of the questionnaire by returning a reply slip is frequently adopted. However, in observational research the risk to participants is lower than in clinical research and so some surveys have used an ‘opt-out’ system. The effect of this approach on response and distress is unknown. We sought to investigate this in a survey of end of life care completed by bereaved relatives.
Methods
Out of a sample of 1422 bereaved relatives we assigned potential participants to one of two study groups: an ‘opt in’ group (n=711) where a letter of invitation was issued with a reply slip to request a copy of the questionnaire; or an ‘opt out’ group (n=711) where the survey questionnaire was provided alongside the invitation letter. We assessed response and distress between groups.
Results
From a sample of 1422, 473 participants returned questionnaires. Response was higher in the ‘opt out’ group than in the ‘opt in’ group (40% compared to 26.4%: χ
2
=29.79, p-value<.01), there were no differences in distress or complaints about the survey between groups, and assignment to the ‘opt out’ group was an independent predictor of response (OR=1.84, 95% CI: 1.45-2.34). Moreover, the ‘opt in’ group were more likely to decline to participate (χ
2
=28.60, p-value<.01) and there was a difference in the pattern of questionnaire responses between study groups.
Conclusion
Given that the ‘opt out’ method of recruitment is associated with a higher response than the ‘opt in’ method, seems to have no impact on complaints or distress about the survey, and there are differences in the patterns of responses between groups, the ‘opt out’ method could be recommended as the most efficient way to recruit into surveys, even in those with a sensitive nature.
Journal Article
Trends in Personal Belief Exemption Rates Among Alternative Private Schools: Waldorf, Montessori, and Holistic Kindergartens in California, 2000–2014
by
Allen, Kristen E.
,
Warraich, Gohar J.
,
Brennan, Julia M.
in
AJPH Research
,
Alternative approaches
,
Alternative education
2017
Objectives. To evaluate trends in rates of personal belief exemptions (PBEs) to immunization requirements for private kindergartens in California that practice alternative educational methods.
Methods. We used California Department of Public Health data on kindergarten PBE rates from 2000 to 2014 to compare annual average increases in PBE rates between schools.
Results. Alternative schools had an average PBE rate of 8.7%, compared with 2.1% among public schools. Waldorf schools had the highest average PBE rate of 45.1%, which was 19 times higher than in public schools (incidence rate ratio = 19.1; 95% confidence interval = 16.4, 22.2). Montessori and holistic schools had the highest average annual increases in PBE rates, slightly higher than Waldorf schools (Montessori: 8.8%; holistic: 7.1%; Waldorf: 3.6%).
Conclusions. Waldorf schools had exceptionally high average PBE rates, and Montessori and holistic schools had higher annual increases in PBE rates. Children in these schools may be at higher risk for spreading vaccine-preventable diseases if trends are not reversed.
Journal Article
Pre-Survey Text Messages (SMS) Improve Participation Rate in an Australian Mobile Telephone Survey: An Experimental Study
by
Chittleborough, Catherine Ruth
,
Campostrini, Stefano
,
Dal Grande, Eleonora
in
Adolescent
,
Adult
,
Adults
2016
Mobile telephone numbers are increasingly being included in household surveys samples. As approach letters cannot be sent because many do not have address details, alternatives approaches have been considered. This study assesses the effectiveness of sending a short message service (SMS) to a random sample of mobile telephone numbers to increase response rates. A simple random sample of 9000 Australian mobile telephone numbers: 4500 were randomly assigned to be sent a pre-notification SMS, and the remaining 4500 did not have a SMS sent. Adults aged 18 years and over, and currently in paid employment, were eligible to participate. American Association for Public Opinion Research formulas were used to calculated response cooperation and refusal rates. Response and cooperation rate were higher for the SMS groups (12.4% and 28.6% respectively) than the group with no SMS (7.7% and 16.0%). Refusal rates were lower for the SMS group (27.3%) than the group with no SMS (35.9%). When asked, 85.8% of the pre-notification group indicated they remembered receiving a SMS about the study. Sending a pre-notification SMS is effective in improving participation in population-based surveys. Response rates were increased by 60% and cooperation rates by 79%.
Journal Article