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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK
The development of Electronic Health Records (EHRs) forms an integral part of the information strategy for the National Health Service (NHS) in the UK, with the aim of facilitating health information exchange for patient care and secondary use, including research and healthcare planning. Implementing EHR systems requires an understanding of patient expectations for consent mechanisms and consideration of public awareness towards information sharing as might be made possible through integrated EHRs across primary and secondary health providers. Objectives: To explore levels of public awareness about EHRs and to examine attitudes towards different consent models with respect to sharing identifiable and de-identified records for healthcare provision, research and planning. Methods: A cross-sectional questionnaire survey was administered to adult patients and members of the public in primary and secondary care clinics in West London, UK in 2011. In total, 5331 individuals participated in the survey, and 3157 were included in the final analysis. Results: The majority (91%) of respondents expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed. Compared with White British respondents, those from all other ethnic groups were more likely to anticipate their permission would be obtained before their de-identified records were used. Of the study population, 59% reported already being aware of EHRs before the survey. Older respondents and individuals with complex patterns of interaction with healthcare services were more likely to report prior awareness of EHRs. Individuals self-identifying as belonging to ethnic groups other than White British, and those with lower educational qualifications were less likely to report being aware of EHRs than White British respondents and respondents with degree-level education, respectively. Those who reported being aware of EHRs were less likely to say they expected explicit consent to be sought before use of their de-identified record. Conclusions: A large number of patients remain unaware of EHRs, while preference for implicit consent is stronger among those who report previous awareness. Differences in awareness levels and consent expectations between groups with different socio-demographic characteristics suggest that public education and information campaigns should target specific groups to increase public awareness and ensure meaningful informed consent mechanisms.
Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: Results from a mixed methods study Healthcare Information Systems
Background: Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK. Methods: Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N∈=∈5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N∈=∈120). Qualitative data were analysed thematically. Results: In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision. Conclusions: Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing.
Health risks at work mean risks at home: Spatial aspects of COVID-19 among migrant workers in precarious jobs in England.
During COVID-19 lockdowns in England, 'key workers' including factory workers, carers and cleaners had to continue to travel to workplaces. Those in key worker jobs were often from more marginalised communities, including migrant workers in precarious employment. Recognising space as materially and socially produced, this qualitative study explores migrant workers' experiences of navigating COVID-19 risks at work and its impacts on their home spaces. Migrant workers in precarious employment often described workplace COVID-19 protection measures as inadequate. They experienced work space COVID-19 risks as extending far beyond physical work boundaries. They developed their own protection measures to try to avoid infection and to keep the virus away from family members. Their protection measures included disinfecting uniforms, restricting leisure activities and physically separating themselves from their families. Inadequate workplace COVID-19 protection measures limited workers' ability to reduce risks. In future outbreaks, support for workers in precarious jobs should include free testing, paid sick leave and accommodation to allow for self-isolation to help reduce risks to workers' families. Work environments should not be viewed as discrete risk spaces when planning response measures; responses and risk reduction approaches must also take into account impacts on workers' lives beyond the workplace.
Understanding the lived experience of pregnancy and birth for survivors of rape and sexual assault.
BACKGROUND: One in five women in the UK are survivors of rape and sexual assault, and four in five women will give birth. This implies that a substantial number of women experience rape and sexual assault before pregnancy. We highlight and explore the voices and lived experiences of survivors during pregnancy and birth, to better understand the relationship between sexual violence, biomedicine, and pregnancy and to inform maternity care practice. METHODS: This qualitative research took an intersectional feminist approach. We conducted in-depth individual interviews in England with fourteen women who self-identified as survivors of rape or sexual assault, and who had experienced pregnancy and birth after the assault. We conducted open line-by-line coding of the interview transcripts, and identified key themes and sub-themes inductively. RESULTS: Three themes help summarise the narratives: control, safety and trauma. Maintaining a sense of control was important to survivors but they often reported objectification by healthcare staff and lack of consent or choice about healthcare decisions. Participants' preferences for giving birth were often motivated by their desire to feel in control and avoid triggering traumatic memories of the sexual assault. Survivors felt safer when they trusted staff. Many participants said it was important for staff to know they were survivors but none were asked about this. Pregnancy and birth experiences were triggering when they mirrored the assault, for instance if the woman was prevented from moving. Many of our participants reported having unmet mental health care needs before, during or after pregnancy. CONCLUSIONS: Survivors of sexual violence have specific maternity care needs. For our participants, these needs were often not met, leading to negative or traumatic experiences of pregnancy and birth. Systemic biases and poor birth experience jeopardise both psychological and physical safety. Funding for maternity and mental health services must be improved, so that they meet minimum staffing and care standards. Maternity services should urgently introduce trauma-informed models of care.
COVID-19 vaccination decisions among Gypsy, Roma, and Traveller communities: A qualitative study moving beyond "vaccine hesitancy".
BACKGROUND: Many people refuse vaccination and it is important to understand why. Here we explore the experiences of individuals from Gypsy, Roma, and Traveller groups in England to understand how and why they decided to take up or to avoid COVID-19 vaccinations. METHODS: We used a participatory, qualitative design, including wide consultations, in-depth interviews with 45 individuals from Gypsy, Roma, and Traveller, communities (32 female, 13 male), dialogue sessions, and observations, in five locations across England between October 2021 and February 2022. FINDINGS: Vaccination decisions overall were affected by distrust of health services and government, which stemmed from prior discrimination and barriers to healthcare which persisted or worsened during the pandemic. We found the situation was not adequately characterised by the standard concept of "vaccine hesitancy". Most participants had received at least one COVID-19 vaccine dose, usually motivated by concerns for their own and others' health. However, many participants felt coerced into vaccination by medical professionals, employers, and government messaging. Some worried about vaccine safety, for example possible impacts on fertility. Their concerns were inadequately addressed or even dismissed by healthcare staff. INTERPRETATION: A standard "vaccine hesitancy" model is of limited use in understanding vaccine uptake in these populations, where authorities and health services have been experienced as untrustworthy in the past (with little improvement during the pandemic). Providing more information may improve vaccine uptake somewhat; however, improved trustworthiness of health services for GRT communities is essential to increase vaccine coverage. FUNDING: This paper reports on independent research commissioned and funded by the National Institute for Health Research (NIHR) Policy Research Programme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care or its arm's length bodies, and other Government Departments.
'Bending' against straightening devices: queer lived experiences of sexuality and sexual health in Bangladesh.
BACKGROUND: Despite global data around increased health risks among sexual and gender diverse populations, lived experiences of young lesbian, gay, bisexual, transgender, queer or questioning, and others (LGBTQ+) people are often ignored in mainstream health research. This is particularly evident in countries such as Bangladesh where the rights of sexual minorities are not recognised. This article looks at queer lived experiences of sexuality and sexual health within such a context. We use the phenomenological framework of heteronormative 'straightening devices' - mechanisms working to direct people towards heterosexuality, gender conformity, and procreative marriage - to identify 'invisible' structures upholding normative sexual behaviours and see how young people in Bangladesh navigate these in their everyday lives. METHODS: This article is based on qualitative data collected in Dhaka, Bangladesh over nine months in 2019 as part of the first author's doctoral research. Using thematic analysis, we draw on experiences of normative sexual expectations from biographical in-depth interviews with 14 purposively sampled LGBTQ + individuals aged 18 to 24. RESULTS: Respondents identified heteronormative expectations around gender norms of traditional behaviour and presentation for men and women as well as parental expectations of compulsory heterosexuality through marriage. These straightening devices existed at multiple levels, including individual, interpersonal, community, and societal. The four main themes around straightening devices include marriage norms for women; harassment of feminine-presenting bodies in public spaces; heteronormative healthcare; and consequences of not embodying heteronormativity. CONCLUSION: Our study highlighted young people's everyday experiences of having to 'bend' to - and against - heteronormative straightening devices at home, in public spaces, and within institutions such as healthcare in Bangladesh. The exploration of queer experiences provides new insights into context-specific ways in which sexual and gender diverse people understand themselves. Further research using the framework of straightening devices can help public health professionals to identify more 'barriers' confronted by sexual and gender diverse young people.
Interpregnancy intervals and adverse birth outcomes in high-income countries: An international cohort study.
BACKGROUND: Most evidence for interpregnancy interval (IPI) and adverse birth outcomes come from studies that are prone to incomplete control for confounders that vary between women. Comparing pregnancies to the same women can address this issue. METHODS: We conducted an international longitudinal cohort study of 5,521,211 births to 3,849,193 women from Australia (1980-2016), Finland (1987-2017), Norway (1980-2016) and the United States (California) (1991-2012). IPI was calculated based on the time difference between two dates-the date of birth of the first pregnancy and the date of conception of the next (index) pregnancy. We estimated associations between IPI and preterm birth (PTB), spontaneous PTB, and small-for-gestational age births (SGA) using logistic regression (between-women analyses). We also used conditional logistic regression comparing IPIs and birth outcomes in the same women (within-women analyses). Random effects meta-analysis was used to calculate pooled adjusted odds ratios (aOR). RESULTS: Compared to an IPI of 18-23 months, there was insufficient evidence for an association between IPI <6 months and overall PTB (aOR 1.08, 95% CI 0.99-1.18) and SGA (aOR 0.99, 95% CI 0.81-1.19), but increased odds of spontaneous PTB (aOR 1.38, 95% CI 1.21-1.57) in the within-women analysis. We observed elevated odds of all birth outcomes associated with IPI ≥60 months. In comparison, between-women analyses showed elevated odds of adverse birth outcomes for <12 month and >24 month IPIs. CONCLUSIONS: We found consistently elevated odds of adverse birth outcomes following long IPIs. IPI shorter than 6 months were associated with elevated risk of spontaneous PTB, but there was insufficient evidence for increased risk of other adverse birth outcomes. Current recommendations of waiting at least 24 months to conceive after a previous pregnancy, may be unnecessarily long in high-income countries.
Evaluating Complex Interventions Using Qualitative Longitudinal Research: A Case Study of Understanding Pathways to Violence Prevention.
Evaluating social change programs requires methods that account for changes in context, implementation, and participant experience. We present a case study of a school-based partner violence prevention program with young people, where we conducted 33 repeat interviews with nine participants during and after an intervention and analyzed participant trajectories. We show how repeat interviews conducted during and after a social change program were useful in helping us understand how the intervention worked by providing rich contextual information, elucidating gradual shifts among participants, and identifying aspects of the intervention that appear to influence change. Long-term effects of social change interventions are very hard to quantify or measure directly. We argue that a qualitative longitudinal approach provides a way to measure subtle changes that can serve as proxies for longer term impacts.
Associations between interpregnancy interval and preterm birth by previous preterm birth status in four high-income countries: a cohort study.
OBJECTIVE: To investigate the effect of interpregnancy interval (IPI) on preterm birth (PTB) according to whether the previous birth was preterm or term. DESIGN: Cohort study. SETTING: USA (California), Australia, Finland, Norway (1980-2017). POPULATION: Women who gave birth to first and second (n = 3 213 855) singleton livebirths. METHODS: Odds ratios (ORs) for PTB according to IPIs were modelled using logistic regression with prognostic score stratification for potential confounders. Within-site ORs were pooled by random effects meta-analysis. OUTCOME MEASURE: PTB (gestational age <37 weeks). RESULTS: Absolute risk of PTB for each IPI was 3-6% after a previous term birth and 17-22% after previous PTB. ORs for PTB differed between previous term and preterm births in all countries (P-for-interaction ≤ 0.001). For women with a previous term birth, pooled ORs were increased for IPI <6 months (OR 1.50, 95% CI 1.43-1.58); 6-11 months (OR 1.10, 95% CI 1.04-1.16); 24-59 months (OR 1.16, 95% CI 1.13-1.18); and ≥ 60 months (OR 1.72, 95%CI 1.60-1.86), compared with 18-23 months. For previous PTB, ORs were increased for <6 months (OR 1.30, 95% CI 1.18-1.42) and ≥60 months (OR 1.29, 95% CI 1.17-1.42), but were less than ORs among women with a previous term birth (P
Unpacking power dynamics in research and evaluation on social accountability for sexual and reproductive health and rights.
Over the past decade, social accountability for health has coalesced into a distinct field of research and practice. Whether explicitly stated or not, changed power relations are at the heart of what social accountability practitioners seek, particularly in the context of sexual and reproductive health. Yet, evaluations of social accountability programs frequently fail to assess important power dynamics. In this commentary, we argue that we must include an examination of power in research and evaluation of social accountability in sexual and reproductive health, and suggest ways to do this. The authors are part of a community of practice on measuring social accountability and health outcomes. We share key lessons from our efforts to conduct power sensitive research using different approaches and methods.First, participatory research and evaluation approaches create space for program participants to engage actively in evaluations by defining success. Participation is also one of the key elements of feminist evaluation, which centers power relations rooted in gender. Participatory approaches can strengthen 'traditional' health evaluation approaches by ensuring that the changes assessed are meaningful to communities.Fields from outside health offer approaches that help to describe and assess changes in power dynamics. For example, realist evaluation analyses the causal processes, or mechanisms, grounded in the interactions between social, political and other structures and human agency; programs try to influence these structures and/or human agency. Process tracing requires describing the mechanisms underlying change in power dymanics in a very detailed way, promoting insight into how changes in power relationships are related to the broader program.Finally, case aggregation and comparison entail the aggregation of data from multiple cases to refine theories about when and how programs work. Case aggregation can allow for nuanced attention to context while still producing lessons that are applicable to inform programming more broadly.We hope this brief discussion encourages other researchers and evaluators to share experiences of analysing power relations as part of evaluation of social accountability interventions for sexual and reproductive health so that together, we improve methodology in this crucial area.
Improving measurement of child abuse and neglect: A systematic review and analysis of national prevalence studies.
OBJECTIVES: Child maltreatment through physical abuse, sexual abuse, emotional abuse, neglect, and exposure to domestic violence, causes substantial adverse health, educational and behavioural consequences through the lifespan. The generation of reliable data on the prevalence and characteristics of child maltreatment in nationwide populations is essential to plan and evaluate public health interventions to reduce maltreatment. Measurement of child maltreatment must overcome numerous methodological challenges. Little is known to date about the extent, nature and methodological quality of these national studies. This study aimed to systematically review the most comprehensive national studies of the prevalence of child maltreatment, and critically appraise their methodologies to help inform the design of future studies. METHODS: Guided by PRISMA and following a published protocol, we searched 22 databases from inception to 31 May 2019 to identify nationwide studies of the prevalence of either all five or at least four forms of child maltreatment. We conducted a formal quality assessment and critical analysis of study design. RESULTS: This review identified 30 national prevalence studies of all five or at least four forms of child maltreatment, in 22 countries. While sound approaches are available for different settings, methodologies varied widely in nature and robustness. Some instruments are more reliable and obtain more detailed and useful information about the characteristics of the maltreatment, including its nature, frequency, and the relationship between the child and the person who inflicted the maltreatment. Almost all studies had limitations, especially in the level of detail captured about maltreatment, and the adequacy of constructs of maltreatment types. CONCLUSIONS: Countries must invest in rigorous national studies of the prevalence of child maltreatment. Studies should use a sound instrument containing appropriate maltreatment constructs, and obtain nuanced information about its nature.
Mobile clinics in humanitarian emergencies: a systematic review.
BACKGROUND: Despite the widespread reliance on mobile clinics for delivering health services in humanitarian emergencies there is little empirical evidence to support their use. We report a narrative systematic review of the empirical evidence evaluating the use of mobile clinics in humanitarian settings. METHODS: We searched MEDLINE, EMBASE, Global Health, Health Management Information Consortium, and The Cochrane Library for manuscripts published between 2000 and 2019. We also conducted a grey literature search via Global Health, Open Grey, and the WHO publication database. Empirical studies were included if they reported on at least one of the following evaluation criteria: relevance/appropriateness, connectedness, coherence, coverage, efficiency, effectiveness, and impact. FINDINGS: Five studies met the inclusion criteria: all supported the use of mobile clinics in the particular setting under study. Three studies included controls. Two studies were assessed as good quality. The studies reported on mobile clinics providing non-communicable disease interventions, mental health services, sexual and reproductive health services, and multiple primary health care services in Afghanistan, the Democratic Republic of the Congo , Haiti, and the Occupied Palestinian Territories. Studies assessed one or more of the following evaluation domains: relevance/appropriateness, coverage, efficiency, and effectiveness. Four studies made recommendations including: i) ensure that mobile clinics are designed to complement clinic-based services; ii) improve technological tools to support patient follow-up, improve record-keeping, communication, and coordination; iii) avoid labelling services in a way that might stigmatise attendees; iv) strengthen referral to psychosocial and mental health services; v) partner with local providers to leverage resources; and vi) ensure strong coordination to optimise the continuum of care. Recommendations regarding the evaluation of mobile clinics include carrying out comparative studies of various modalities (including fixed facilities and community health workers) in order to isolate the effects of the mobile clinics. In the absence of a sound evidence base informing the use of mobile clinics in humanitarian crises, we encourage the integration of: i) WASH services, ii) nutrition services, iii) epidemic surveillance, and iv) systems to ensure the quality and safety of patient care. We recommend that future evaluations report against an established evaluation framework. CONCLUSION: Evidence supporting the use of mobile clinics in humanitarian emergencies is limited. We encourage more studies of the use of mobile clinics in emergency settings. FUNDING: Salary support for this review was provided under the RECAP project by United Kingdom Research and Innovation as part of the Global Challenges Research Fund, grant number ES/P010873/1.
Peer-facilitated community-based interventions for adolescent health in low- and middle-income countries: A systematic review.
BACKGROUND: Adolescents aged 10-19 represent one sixth of the world's population and have a high burden of morbidity, particularly in low-resource settings. We know little about the potential of community-based peer facilitators to improve adolescent health in such contexts. METHODS: We did a systematic review of peer-facilitated community-based interventions for adolescent health in low- and middle-income countries (LMICs). We searched databases for randomised controlled trials of interventions featuring peer education, counselling, activism, and/or outreach facilitated by young people aged 10-24. We included trials with outcomes across key areas of adolescent health: infectious and vaccine preventable diseases, undernutrition, HIV/AIDS, sexual and reproductive health, unintentional injuries, violence, physical disorders, mental disorders and substance use. We summarised evidence from these trials narratively. PROSPERO registration: CRD42016039190. RESULTS: We found 20 studies (61,014 adolescents). Fourteen studies tested interventions linked to schools or colleges, and 12 had non-peer-facilitated components, e.g. health worker training. Four studies had HIV-related outcomes, but none reported reductions in HIV prevalence or incidence. Nine studies had clinical sexual and reproductive health outcomes, but only one reported a positive effect: a reduction in Herpes Simplex Virus-2 incidence. Three studies had violence-related outcomes, two of which reported reductions in physical violence by school staff and perpetration of physical violence by adolescents. Seven studies had mental health outcomes, four of which reported reductions in depressive symptoms. Finally, we found eight studies on substance use, four of which reported reductions in alcohol consumption and smoking or tobacco use. There were no studies on infectious and vaccine preventable diseases, undernutrition, or injuries. CONCLUSIONS: There are few trials on the effects of peer-facilitated community-based interventions for adolescent health in LMICs. Existing trials have mixed results, with the most promising evidence supporting work with peer facilitators to improve adolescent mental health and reduce substance use and violence.
Spatial dimensions of telemedicine and abortion access: a qualitative study of women's experiences.
BACKGROUND: Telemedicine may help women comply with onerous legislative requirements for accessing abortion services. In Utah, there are three mandatory steps: a state-mandated information visit, a 72-h waiting period, and finally the abortion procedure itself. We explored women's experiences of using telemedicine for the first step: the information visit. METHODS: We conducted 20 in-depth interviews with women recruited from Planned Parenthood Association of Utah in 2017 and analyzed them using iterative thematic techniques, using a framework based on Massey's conceptualization of space as comprising temporal, material and social dimensions. RESULTS: Temporal, material and social dimensions of women's access to abortion services intertwined to reduce access and cause discomfort and inconvenience among women in our sample. The 72-h waiting period and travel distance were the key temporal and material barriers, while social dimensions included fear of social judgement, religious influence, and negative stereotyping about people who have abortions. Women described traveling long distances alone and risking excessive pain (e.g. denying pain medication in order to drive immediately after the procedure) to try to overcome these barriers. CONCLUSION: Using telemedicine helped patients reduce burdens created by policies requiring attendance at multiple appointments in a state with limited abortion services. Attending to spatial aspects of abortion provision helps identify how these different dimensions of abortion access interact to reduce access and impose undue burdens. Telemedicine can improve privacy, reduce travel expenses, and reduce other burdens for women seeking abortion care.