Search results

Understanding and measuring the effects of patient and public involvement: an ethnographic study

Bases, stages and 'working your way up': Young people's talk about non-coital practices and 'normal' sexual trajectories

While the symbolic importance of 'losing your virginity' has been described in many settings, meanings of non-coital sexual experiences, such as oral sex and hand-genital contact, are often missing from theorisation of sexual transitions. Drawing on data from a qualitative mixed methods study with young people aged 16-18 in England (the 'sixteen18 project'), we explore normative expectations about non-coital sex and sexual trajectories. Our study demonstrates how gendered talk about a 'normal order' of non-coital sexual activities 'leading to' vaginal intercourse contributes to a heteronormative discourse shaping sexual narratives and experiences long before first vaginal intercourse. Pre-coital sexual experiences were accounted for in terms of providing an opportunity for young men to develop and demonstrate sexual skill, for young women to be prepared for penetration by a penis and to learn to enjoy partnered sexual encounters, and for both sexes to develop the emotional intimacy required for first vaginal intercourse in a relationship. Prior to 'having sex', young people's talk about, and experience of, non-coital sexual activities helps circulate ideas about what 'proper' sex is, which sexual practices are valued and why, which skills are required and by whom, and whose pleasure is prioritised. If sexual health programmes are to challenge gendered inequalities in dominant assumptions about sex, non-coital sexual activities should be viewed as a legitimate area for discussion.

Effects of Community Participation on Improving Uptake of Skilled Care for Maternal and Newborn Health: A Systematic Review

Background: Despite a broad consensus that communities should be actively involved in improving their own health, evidence for the effect of community participation on specific health outcomes is limited. We examine the effectiveness of community participation interventions in maternal and newborn health, asking: did participation improve outcomes? We also look at how the impact of community participation has been assessed, particularly through randomised controlled trials, and make recommendations for future research. We highlight the importance of qualitative investigation, suggesting key areas for qualitative data reporting alongside quantitative work. Methods and findings: Systematic review of published and 'grey' literature from 1990. We searched 11 databases, and followed up secondary references. Main outcome measures were the use of skilled care before/during/after birth and maternal/newborn mortality/morbidity. We included qualitative and quantitative studies from any country, and used a community participation theoretical framework to analyse the data. We found 10 interventions. Community participation had largely positive impacts on maternal/newborn health as part of a package of interventions, although not necessarily on uptake of skilled care. Interventions improving mortality or use of skilled care raised awareness, encouraged dialogue and involved communities in designing solutions-but so did those showing no effect. Discussion: There are few high-quality, quantitative studies. We also lack information about why participation interventions do/do not succeed - an area of obvious interest for programme designers. Qualitative investigation can help fill this information gap and should be at the heart of future quantitative research examining participation interventions - in maternal/newborn health, and more widely. This review illustrates the need for qualitative investigation alongside RCTs and other quantitative studies to understand complex interventions in context, describe predicted and unforeseen impacts, assess potential for generalisability, and capture the less easily measurable social/political effects of encouraging participation. © 2013 Marston et al.

Increasing the Use of Skilled Health Personnel Where Traditional Birth Attendants Were Providers of Childbirth Care: A Systematic Review

Background: Improved access to skilled health personnel for childbirth is a priority strategy to improve maternal health. This study investigates interventions to achieve this where traditional birth attendants were providers of childbirth care and asks what has been done and what has worked? Methods and Findings: We systematically reviewed published and unpublished literature, searching 26 databases and contacting experts to find relevant studies. We included references from all time periods and locations. 132 items from 41 countries met our inclusion criteria and are included in an inventory; six were intervention evaluations of high or moderate quality which we further analysed. Four studies report on interventions to deploy midwives closer to communities: two studies in Indonesia reported an increase in use of skilled health personnel; another Indonesian study showed increased uptake of caesarean sections as midwives per population increased; one study in Bangladesh reported decreased risk of maternal death. Two studies report on interventions to address financial barriers: one in Bangladesh reported an increase in use of skilled health personnel where financial barriers for users were addressed and incentives were given to skilled care providers; another in Peru reported that use of emergency obstetric care increased by subsidies for preventive and maternity care, but not by improved quality of care. Conclusions: The interventions had positive outcomes for relevant maternal health indicators. However, three of the studies evaluate the village midwife programme in Indonesia, which limits the generalizability of conclusions. Most studies report on a main intervention, despite other activities, such as community mobilization or partnerships with traditional birth attendants. Many authors note that multiple factors including distance, transport, family preferences/support also need to be addressed. Case studies of interventions in the inventory illustrate how different countries attempted to address these complexities. Few high quality studies that measure effectiveness of interventions exist. © 2012 Vieira et al.

Survey of patient and public perceptions of electronic health records for healthcare, policy and research: Study protocol

Background: Immediate access to patients complete health records via electronic databases could improve healthcare and facilitate health research. However, the possible benefits of a national electronic health records (EHR) system must be balanced against public concerns about data security and personal privacy. Successful development of EHR requires better understanding of the views of the public and those most affected by EHR: users of the National Health Service. This study aims to explore the correlation between personal healthcare experience (including number of healthcare contacts and number and type of longer term conditions) and views relating to development of EHR for healthcare, health services planning and policy and health research. Methods/design. A multi-site cross-sectional self-complete questionnaire designed and piloted for use in waiting rooms was administered to patients from randomly selected outpatients clinics at a university teaching hospital (431 beds) and general practice surgeries from the four primary care trusts within the catchment area of the hospital. All patients entering the selected outpatients clinics and general practice surgeries were invited to take part in the survey during August-September 2011. Statistical analyses will be conducted using descriptive techniques to present respondents overall views about electronic health records and logistic regression to explore associations between these views and participants personal circumstances, experiences, sociodemographics and more specific views about electronic health records. Discussion. The study design and implementation were successful, resulting in unusually high response rates and overall recruitment (85.5%, 5336 responses). Rates for face-to-face recruitment in previous work are variable, but typically lower (mean 76.7%, SD 20). We discuss details of how we collected the data to provide insight into how we obtained this unusually high response rate. © 2012 Luchenski et al.; licensee BioMed Central Ltd.

Healthcare professionals' representations of 'patient and public involvement' and creation of 'public participant' identities: Implications for the development of inclusive and bottom-up community participation initiatives

Community participation is widely thought to be important in the improvement of healthcare delivery and in health equity. Yet there is little agreement about what 'participation' means in practice, or when it might be necessary. Drawing on the case of healthcare delivery in the UK, we examine key socio-psychological elements at the heart of community engagement with participatory processes. We explore the link between public participant identities and social representations of patient and public involvement (PPI) among healthcare professionals, and examine the role they play in supporting or undermining inclusive and bottom-up forms of PPI. The study is ethnographic, using in-depth interviews with public participants and healthcare professionals involved in PPI, and observation of PPI activities in London. We show that it is crucial to take account of more than individual participants' capacities in order to understand and improve PPI. Professionals' talk about PPI contains contradictory discourses about participant identity. These contradictions are reflected in involvees' self-understanding and experience as public participants, constraining their subjectivities and forms of knowledge, and crystallizing in their participatory practices. Involvees must negotiate professionals' negative discourses to develop self-images that reflect their own interests and projects, and that empower them to produce an effect in the public sphere. These processes can hinder successful participation even where there is an institutional infrastructure to promote civic engagement with healthcare. Understanding how involvees construct their own identities through engagement with professional discourses will help develop processes that are positive and enabling rather than negative and limiting. © 2011 John Wiley & Sons, Ltd..

Evaluating social and behavioural impacts of english smoke-free legislation in different ethnic and age groups: Implications for reducing smoking-related health inequalities

Objective To explore social and behavioural impacts of English smoke-free legislation (SFL) in different ethnic groups. Design A longitudinal, qualitative panel study of smokers using in-depth interviews conducted before and after introduction of SFL. Participants A purposive sample of 32 smokers selected from three ethnic groups in deprived London neighbourhoods with approximately equal numbers of younger and older, male and female respondents. Results SFL has had positive impacts with half smoking less and three quitting. Although there were no apparent differences in smoking and quitting behaviours between groups, there were notable differences in the social impacts of SFL. The greatest negative impacts were in smokers over 60 years, potentially increasing their social isolation, and on young Somali women whose smoking was driven more underground. In contrast, most other young adult smokers felt relatively unaffected by SFL, describing unexpected social benefits. Although there was high compliance, reports of illegal smoking were more frequent among young, ethnic minority smokers, with descriptions of venues involved suggesting they are ethnically distinct and well hidden. Half of respondents reported stopping smoking in their own homes after SFL, but almost all were Somali or Turkish. White respondents tended to report increases in home smoking. Discussion Although our study suggests that SFL can lead to reductions in tobacco consumption, it also shows that impacts vary by ethnicity, age and sex. This study highlights the importance of understanding the meaning of smoking in different social contexts so future tobacco control interventions can be developed to reduce health and social inequalities.

Factors associated with sexual risk behaviour among young people in ukraine

We used data from a behavioural survey of Ukrainian men and women aged 14-24 to examine the relationship between nine potential risk factors and two HIV risk outcomes: non-use of condom at last sex, and multiple sexual partnerships. Younger age at first sex was positively associated with both health risk outcomes, and condom non-use at first sex was associated with subsequent non-use of condoms at last sex. There were regional differences in frequencies of both HIV risk behaviours. Compared with those who reported living in the place they were born, not living permanently at the current place of residence was associated with a fivefold increase in the odds of multiple partnership for women but not for men. Alcohol and drug use were associated with higher odds of multiple partnership and the effect was greater among women than among men. The data analysed are cross-sectional so cannot establish causality. More studies are needed to confirm these results and investigate causal relationships between the possible risk factors and the two health risk behaviours.

Factors that shape young people's sexual behaviour: a systematic review

Background: Since nearly half of new HIV infections worldwide occur among young people aged 15-24 years, changing sexual behaviour in this group will be crucial in tackling the pandemic. Qualitative research is starting to reveal how social and cultural forces shape young people's sexual behaviour and can help explain why information campaigns and condom distribution programmes alone are often not enough to change it. We undertook a systematic review to identify key themes emerging from such research, to help inform policymakers developing sexual health programmes, and guide future research. Methods: We reviewed 268 qualitative studies of young people's sexual behaviour published between 1990 and 2004. We developed a method of comparative thematic analysis in which we coded each document according to themes they contained. We then identified relations between codes, grouping them accordingly into broader overall themes. Documents were classified as either primary or secondary depending on their quality and whether they contained empirical data. From the 5452 reports identified, we selected 246 journal articles and 22 books for analysis. Findings: Seven key themes emerged: young people assess potential sexual partners as "clean" or "unclean"; sexual partners have an important influence on behaviour in general; condoms are stigmatising and associated with lack of trust; gender stereotypes are crucial in determining social expectations and, in turn, behaviour; there are penalties and rewards for sex from society; reputations and social displays of sexual activity or inactivity are important; and social expectations hamper communication about sex. The themes do not seem to be exclusive to any particular country or cultural background, and all themes were present, in varying degrees, in all countries assessed. Interpretation: This study summarises key qualitative findings that help in understanding young people's sexual behaviour and why they might have unsafe sex; policymakers must take these into account when designing HIV programmes. Considerable overlap exists between current studies, which indicates the need to broaden the scope of future work. © 2006 Elsevier Ltd. All rights reserved.

Promoting Young People's Sexual Health

Young people and condom use: Findings from qualitative research

Impact on contraceptive practice of making emergency hormonal contraception available over the counter in Great Britain: Repeated cross sectional surveys

Objective: To examine the impact on contraceptive practice of making emergency hormonal contraception available over the counter. Design: Analysis of data on contraceptive practice for women aged 16-49 years in the period 2000-2 from the Omnibus Survey, a multipurpose survey in which around 7600 adults living in private households are interviewed each year. Setting Private households in Great Britain. Main outcome measures: Use of different types of contraception and rates of unprotected sex. Results: After emergency hormonal contraception was made available over the counter, levels of use of different types of contraception by women aged 16-49 remained similar. No significant change occurred in the proportion of women using emergency hormonal contraception (8.4% in 2000,7.9% in 2001, 7.2% in 2002) or having unprotected sex. A change did, however, occur in where women obtained emergency hormonal contraception; a smaller proportion of women obtained emergency hormonal contraception from physicians and a greater proportion bought it over the counter. No significant change occurred in the proportion of women using more reliable methods of contraception, such as the oral contraceptive pill, or in the proportion of women using emergency hormonal contraception more than once during a year. Conclusions: Making emergency hormonal contraception available over the counter does not seem to have led to an increase in its use, to an increase in unprotected sex, or to a decrease in the use of more reliable methods of contraception.

What is heterosexual coercion? Interpreting narratives from young people in Mexico City

Freedom from sexual coercion is frequently cited as essential for good sexual health. Sexual experiences cannot usually be observed directly, and interpretation of interview data is therefore crucial in our understanding of sexual behaviour. This paper explores the ways in which narratives can be used to understand sexual experiences, using coercion as a specific example. The narratives examined are from interviews with young people in low-income areas of Mexico City. This study demonstrates that sexual coercion is impossible to define objectively. In addition, the concept of coercion is focused too much on women, excluding men's negative sexual experiences, and can include events that the 'victims' do not see as coercive. Coercion is a highly subjective and fluid concept, limiting its value as a defining element of sexual health. An alternative way of conceptualising coercive experiences is suggested. © Blackwell Publishing Ltd/Editorial Board 2005.

Young, unmarried men and sex: Do friends and partners shape risk behaviour?

Young people's sexual health is of growing concern. Past studies have been limited by their focus on the individual. More useful are interaction-orientated approaches that focus on partners and on the social context, rather than on the individual alone. This paper describes a study of 8068 men in Mexico City that takes this new approach. Multivariate techniques were used to examine use of contraception for pregnancy prevention and for sexually transmitted disease prophylaxis among unmarried, heterosexually active men aged 15-24. Friends and sexual partners were found to play an important role in shaping risk behaviour. To explain such behaviours adequately we need to take account of more than the characteristics of individuals isolated from their social contexts. © 2004 Taylor & Francis Ltd.

Gendered communication among young people in Mexico: Implications for sexual health interventions

Effective communication between partners is crucial for good sexual health, but is often difficult to achieve. This qualitative study shows how gendered communication can act as an important barrier to successful dialogue between men and women. Both content and manner of speaking are often gendered: not only can topics of conversation be socially defined as more or less appropriate for a speaker according to his or her sex, but men and women can also differ systematically in terms of the phrases and words they use. This may lead to a lack of the common forms of expression that are needed for effective communication. The study examines communication about sexuality among young men and women in low-income areas of Mexico City. The relationship between gender stereotypes of sexual behaviour and the gendered nature of communication strategies is explored. The negative consequences of gendered communication for effective dialogue between men and women are illustrated. Interventions that can enhance communication between men and women would be expected to have a positive impact on sexual health. This paper argues that research and interventions intended to improve sexual health may instead inadvertently reinforce communication barriers not only by failing to address the social pressures that exacerbate gendered communication, but also more insidiously, by using language that actively contributes to these pressures. An example of an intervention that avoids this problem is the Mexican programme "Gente Joven" ("Young People"). © 2003 Elsevier Ltd. All rights reserved.

Relationships between contraception and abortion: A review of the evidence

The relationship between levels of contraceptive use and the incidence of induced abortion continues to provoke heated discussion, with some observers arguing that use of abortion decreases as contraceptive prevalence rises and others claiming that increased use of family planning methods causes abortion incidence to rise. Abortion trends are examined in countries with reliable data on abortion and with contraceptive prevalence information from two points in time showing increases in contraceptive use. The role of changes in fertility in mediating the relationship between abortion and contraception is also explored. In seven countries - Kazakhstan, Kyrgyz Republic, Uzbekistan, Bulgaria, Turkey, Tunisia and Switzerland - abortion incidence declined as prevalence of modern contraceptive use rose. In six others - Cuba, Denmark, Netherlands, the United States, Singapore and the Republic of Korea - levels of abortion and contraceptive use rose simultaneously. In all six of these countries, however, overall levels of fertility were falling during the period studied. After fertility levels stabilized in several of the countries that had shown simultaneous rises in contraception and abortion, contraceptive use continued to increase and abortion rates fell. The most clear-cut example of this trend is the Republic of Korea. Rising contraceptive use results in reduced abortion incidence in settings where fertility itself is constant. The parallel rise in abortion and contraception in some countries occurred because increased contraceptive use alone was unable to meet the growing need for fertility regulation in situations where fertility was falling rapidly.

Do unintended pregnancies carried to term lead to adverse outcomes for mother and child? An assessment in five developing countries

This paper investigates whether children later reported as having been unwanted or mistimed at conception will, when compared with children reported as wanted, show adverse effects when the following criteria are applied: receipt of antenatal care before the sixth month of gestation, supervised delivery, full vaccination of the child, and child growth (stunting). The study uses data from five recent Demographic and Health Survey enquiries in Bolivia, Egypt, Kenya, Peru, and the Philippines. In Peru, children unwanted at conception were found to have significantly worse outcomes than other children, but in the other countries, a systematic effect was found only for receipt of antenatal care. Weak measurement of the complex concept of wantedness may have contributed to these results. Birth order of the child, with which wantedness is inextricably linked, has more powerful and pervasive effects, with first-born and second-born children being much less likely to show adverse effects.

COMPare: Qualitative analysis of researchers' responses to critical correspondence on a cohort of 58 misreported trials

Background: Discrepancies between pre-specified and reported outcomes are an important and prevalent source of bias in clinical trials. COMPare (Centre for Evidence-Based Medicine Outcome Monitoring Project) monitored all trials in five leading journals for correct outcome reporting, submitted correction letters on all misreported trials in real time, and then monitored responses from editors and trialists. From the trialists' responses, we aimed to answer two related questions. First, what can trialists' responses to corrections on their own misreported trials tell us about trialists' knowledge of correct outcome reporting? Second, what can a cohort of responses to a standardised correction letter tell us about how researchers respond to systematic critical post-publication peer review? Methods: All correspondence from trialists, published by journals in response to a correction letter from COMPare, was filed and indexed. We analysed the letters qualitatively and identified key themes in researchers' errors about correct outcome reporting, and approaches taken by researchers when their work was criticised. Results: Trialists frequently expressed views that contradicted the CONSORT (Consolidated Standards of Reporting Trials) guidelines or made inaccurate statements about correct outcome reporting. Common themes were: stating that pre-specification after trial commencement is acceptable; incorrect statements about registries; incorrect statements around the handling of multiple time points; and failure to recognise the need to report changes to pre-specified outcomes in the trial report. We identified additional themes in the approaches taken by researchers when responding to critical correspondence, including the following: ad hominem criticism; arguing that trialists should be trusted, rather than follow guidelines for trial reporting; appealing to the existence of a novel category of outcomes whose results need not necessarily be reported; incorrect statements by researchers about their own paper; and statements undermining transparency infrastructure, such as trial registers. Conclusions: Researchers commonly make incorrect statements about correct trial reporting. There are recurring themes in researchers' responses when their work is criticised, some of which fall short of the scientific ideal. Research on methodological shortcomings is now common, typically in the form of retrospective cohort studies describing the overall prevalence of a problem. We argue that prospective cohort studies which additionally issue correction letters in real time on each individual flawed study - and then follow-up responses from trialists and journals - are more impactful, more informative for those consuming the studies critiqued, more informative on the causes of shortcomings in research, and a better use of research resources.

COMPare: A prospective cohort study correcting and monitoring 58 misreported trials in real time

Background: Discrepancies between pre-specified and reported outcomes are an important source of bias in trials. Despite legislation, guidelines and public commitments on correct reporting from journals, outcome misreporting continues to be prevalent. We aimed to document the extent of misreporting, establish whether it was possible to publish correction letters on all misreported trials as they were published, and monitor responses from editors and trialists to understand why outcome misreporting persists despite public commitments to address it. Methods: We identified five high-impact journals endorsing Consolidated Standards of Reporting Trials (CONSORT) (New England Journal of Medicine, The Lancet, Journal of the American Medical Association, British Medical Journal, and Annals of Internal Medicine) and assessed all trials over a six-week period to identify every correctly and incorrectly reported outcome, comparing published reports against published protocols or registry entries, using CONSORT as the gold standard. A correction letter describing all discrepancies was submitted to the journal for all misreported trials, and detailed coding sheets were shared publicly. The proportion of letters published and delay to publication were assessed over 12 months of follow-up. Correspondence received from journals and authors was documented and themes were extracted. Results: Sixty-seven trials were assessed in total. Outcome reporting was poor overall and there was wide variation between journals on pre-specified primary outcomes (mean 76% correctly reported, journal range 25-96%), secondary outcomes (mean 55%, range 31-72%), and number of undeclared additional outcomes per trial (mean 5.4, range 2.9-8.3). Fifty-eight trials had discrepancies requiring a correction letter (87%, journal range 67-100%). Twenty-three letters were published (40%) with extensive variation between journals (range 0-100%). Where letters were published, there were delays (median 99 days, range 0-257 days). Twenty-nine studies had a pre-trial protocol publicly available (43%, range 0-86%). Qualitative analysis demonstrated extensive misunderstandings among journal editors about correct outcome reporting and CONSORT. Some journals did not engage positively when provided correspondence that identified misreporting; we identified possible breaches of ethics and publishing guidelines. Conclusions: All five journals were listed as endorsing CONSORT, but all exhibited extensive breaches of this guidance, and most rejected correction letters documenting shortcomings. Readers are likely to be misled by this discrepancy. We discuss the advantages of prospective methodology research sharing all data openly and pro-actively in real time as feedback on critiqued studies. This is the first empirical study of major academic journals' willingness to publish a cohort of comparable and objective correction letters on misreported high-impact studies. Suggested improvements include changes to correspondence processes at journals, alternatives for indexed post-publication peer review, changes to CONSORT's mechanisms for enforcement, and novel strategies for research on methods and reporting.

Reducing inequalities through greater diversity in clinical trials – As important for medical devices as for drugs and therapeutics

In medicine and public health, the randomised controlled trial (RCT) is generally considered the key generator of ‘gold standard’ evidence. However, basic and clinical research and trials are often unrepresentative of real-world populations. Recruiting insufficiently diverse cohorts of participants in trials (e.g. in terms of socioeconomic status, racial and ethnic background, or sex and gender) may not only overstate the general effectiveness of a technology; it may also actively increase health inequalities. We highlight some general issues in this domain, before discussing several specific illustrative examples in the context of medical devices. High quality evidence on factors that would improve trial recruitment is extremely limited. There is a clear need for research on candidate strategies for improving recruitment of under-represented groups in RCTs. These could include, for example, offering various forms of financial incentives; non-monetary incentives, such as preferential access to the technologies that are being tested if they are found to be effective; and various types of informational messages and nudges; as well as involvement of community partners and champions in the recruitment process. Ideally, recruitment practices should ultimately be based on evidence generated from RCTs. Studies Within a Trial (SWAT), where randomised experiments are built into the actual recruitment processes in RCTs, are an ideal way to gain this evidence. SWAT studies are seeing an increase in traction, as indicated by funding streams in bodies such as the UK-based NIHR. Making greater funding available for studies of this kind is needed to improve the evidence base on how best to improve diversity in trial recruitment.