Madeleine Murtagh

More in hope than expectation: a systematic review of women's expectations and experience of pain relief in labour

BackgroundChildbirth is one of the most painful events that a woman is likely to experience, the multi-dimensional aspect and intensity of which far exceeds disease conditions. A womans lack of knowledge about the risks and benefits of the various methods of pain relief can heighten anxiety. Women are increasingly expected, and are expecting, to participate in decisions about their healthcare. Involvement should allow women to make better-informed decisions; the National Institute for Clinical Excellence has stated that we need effective ways of supporting pregnant women in making informed decisions during labour. Our aim was to systematically review the empirical literature on womens expectations and experiences of pain and pain relief during labour, as well as their involvement in the decision-making process.MethodsA systematic review was conducted using the following databases: Medical Literature Analysis and Retrieval System Online (MEDLINE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Bath Information and Database Service (BIDS), Excerpta Medica Database Guide (EMBASE), Midwives Information and Resource (MIDIRS), Sociological Abstracts and PsychINFO. Studies that examined experience and expectations of pain, and its relief in labour, were appraised and the findings were integrated into a systematic review.ResultsAppraisal revealed four key themes: the level and type of pain, pain relief, involvement in decision-making and control. Studies predominantly showed that women underestimated the pain they would experience. Women may hope for a labour free of pain relief, but many found that they needed or benefited from it. There is a distinction between womens desire for a drug-free labour and the expectation that they may need some sort of pain relief. Inaccurate or unrealistic expectations about pain may mean that women are not prepared appropriately for labour. Many women acknowledged that they wanted to participate in decision-making, but the degree of involvement varied. Women expected to take control in labour in a number of ways, but their degree of reported control was less than hoped for.ConclusionWomen may have ideal hopes of what they would like to happen with respect to pain relief, control and engagement in decision-making, but experience is often very different from expectations. Antenatal educators need to ensure that pregnant women are appropriately prepared for what might actually happen to limit this expectation-experience gap and potentially support greater satisfaction with labour.

Systematic review of mass media interventions designed to improve public recognition of stroke symptoms, emergency response and early treatment

BackgroundMass media interventions have been implemented to improve emergency response to stroke given the emergence of effective acute treatments, but their impact is unclear.MethodsSystematic review of mass media interventions aimed at improving emergency response to stroke, with narrative synthesis and review of intervention development.ResultsTen studies were included (six targeted the public, four both public and professionals) published between 1992 and 2010. Only three were controlled before and after studies, and only one had reported how the intervention was developed. Campaigns aimed only at the public reported significant increase in awareness of symptoms/signs, but little impact on awareness of need for emergency response. Of the two controlled before and after studies, one reported no impact on those over 65 years, the age group at increased risk of stroke and most likely to witness a stroke, and the other found a significant increase in awareness of two or more warning signs of stroke in the same group post-intervention. One campaign targeted at public and professionals did not reduce time to presentation at hospital to within two hours, but increased and sustained thrombolysis rates. This suggests the campaign had a primary impact on professionals and improved the way that services for stroke were organised.ConclusionsCampaigns aimed at the public may raise awareness of symptoms/signs of stroke, but have limited impact on behaviour. Campaigns aimed at both public and professionals may have more impact on professionals than the public. New campaigns should follow the principles of good design and be robustly evaluated.

A patient decision aid to support shared decision-making on anti-thrombotic treatment of patients with atrial fibrillation: randomised controlled trial

Objective: To determine the efficacy of a computerised decision aid in patients with atrial fibrillation making decisions on whether to take warfarin or aspirin therapy. Design: Two-armed open exploratory randomised controlled trial. Setting: Two research clinics deriving participants from general practices in Northeast England. Participants: 109 patients with atrial fibrillation aged over 60. Interventions: Computerised decision aid applied in shared decision-making clinic compared to evidence-based paper guidelines applied as direct advice. Main outcome measures: Primary outcome measure was the decision conflict scale. Secondary outcome measures included anxiety, knowledge, decision-making preference, treatment decision, use of primary and secondary care services and health outcomes. Results: Decision conflict was lower in the computerised decision aid group immediately after the clinic; mean difference −0.18 (95% CI −0.34 to −0.01). Participants in this group not already on warfarin were much less likely to start warfarin than those in the guidelines arm (4/16, 25% compared to the guidelines group 15/16, 93.8%, RR 0.27, 95% CI 0.11 to 0.63). Conclusions: Decision conflict was lower immediately following the use of a computerised decision aid in a shared decision-making consultation than immediately following direct doctor-led advice based on paper guidelines. Furthermore, participants in the computerised decision aid group were significantly much less likely to start warfarin than those in the guidelines arm. The results show that such an approach has a positive impact on decision conflict comparable to other studies of decision aids, but also reduces the uptake of a clinically effective treatment that may have important implications for health outcomes.

Qualitative methods in a randomised controlled trial: the role of an integrated qualitative process evaluation in providing evidence to discontinue the intervention in one arm of a trial of a decision support tool

Objective: To understand participants’ experiences and understandings of the interventions in the trial of a computerised decision support tool in patients with atrial fibrillation being considered for anti-coagulation treatment. Design: Qualitative process evaluation carried out alongside the trial: non-participant observation and semistructured interviews. Participants: 30 participants aged >60 years taking part in the trial of a computerised decision support tool. Results: Qualitative evidence provided the rationale to undertake a decision to discontinue one arm of the trial on the basis that the intervention in that arm, a standard gamble values elicitation exercise was causing confusion and was unlikely to produce valid data on participant values. Conclusions: Qualitative methods used alongside a trial allow an understanding of the process and progress of a trial, and provide evidence to intervene in the trial if necessary, including evidence for the rationale to discontinue an intervention arm of the trial.

DataSHIELD: taking the analysis to the data, not the data to the analysis

Background: Research in modern biomedicine and social science requires sample sizes so large that they can often only be achieved through a pooled co-analysis of data from several studies. But the pooling of information from individuals in a central database that may be queried by researchers raises important ethico-legal questions and can be controversial. In the UK this has been highlighted by recent debate and controversy relating to the UK’s proposed ‘care.data’ initiative, and these issues reflect important societal and professional concerns about privacy, confidentiality and intellectual property. DataSHIELD provides a novel technological solution that can circumvent some of the most basic challenges in facilitating the access of researchers and other healthcare professionals to individual-level data. Methods: Commands are sent from a central analysis computer (AC) to several data computers (DCs) storing the data to be co-analysed. The data sets are analysed simultaneously but in parallel. The separate parallelized analyses are linked by non-disclosive summary statistics and commands transmitted back and forth between the DCs and the AC. This paper describes the technical implementation of DataSHIELD using a modified R statistical environment linked to an Opal database deployed behind the computer firewall of each DC. Analysis is controlled through a standard R environment at the AC. Results: Based on this Opal/R implementation, DataSHIELD is currently used by the Healthy Obese Project and the Environmental Core Project (BioSHaRE-EU) for the federated analysis of 10 data sets across eight European countries, and this illustrates the opportunities and challenges presented by the DataSHIELD approach. Conclusions: DataSHIELD facilitates important research in settings where: (i) a co-analysis of individual-level data from several studies is scientifically necessary but governance restrictions prohibit the release or sharing of some of the required data, and/or render data access unacceptably slow; (ii) a research group (e.g. in a developing nation) is particularly vulnerable to loss of intellectual property—the researchers want to fully share the information held in their data with national and international collaborators, but do not wish to hand over the physical data themselves; and (iii) a data set is to be included in an individual-level co-analysis but the physical size of the data precludes direct transfer to a new site for analysis.

Response to symptoms of stroke in the UK: a systematic review

BackgroundThe English National Stroke Strategy suggests that there is a need to improve the response of patients and witnesses to the symptoms of acute stroke to increase rapid access to specialist care. We wished to review the evidence base regarding the knowledge, attitudes and behaviours of stroke patients, witnesses and the public to the symptoms of stroke and the need for an urgent response at the onset of symptoms.MethodsWe conducted a systematic review of UK articles reporting empirical research on a) awareness of and response to the symptoms of acute stroke or TIA, and b) beliefs and attitudes about diagnosis, early treatment and consequences of acute stroke or TIA. Nine electronic databases were searched using a robust search strategy. Citations and abstracts were screened independently by two reviewers. Data were extracted by two researchers independently using agreed criteria.Results11 studies out of 7144 citations met the inclusion criteria. Methods of data collection included: postal survey (n = 2); interview survey (n = 6); review of hospital documentation (n = 2) and qualitative interviews (n = 1). Limited data reveal a good level of knowledge of the two commonest stroke symptoms (unilateral weakness and speech disturbance), and of the need for an emergency response among the general public and at risk patients. Despite this, less than half of patients recognised they had suffered a stroke. Symptom recognition did not reduce time to presentation. For the majority, the first point of contact for medical assistance was a general practitioner.ConclusionsThere is an assumption that, in the UK, public knowledge of the symptoms of stroke and of the need for an emergency response is lacking, but there is little published research to support this. Public awareness raising campaigns to improve response to the symptoms of stroke therefore may not produce an increase in desired behaviours. Further research is needed to understand why people who experience or witness stroke symptoms frequently do not call emergency services.

Tensions in public health policy: patient engagement, evidence-based public health and health inequalities

This paper examines the proposition that there are considerable tensions between key strategies in health policy—namely, evidence-based approaches to population health improvement, reduction of health inequalities, and public and patient engagement—using (1) a critical analysis of the intersection of evidence-based public health, patient and public engagement, and health inequalities policies from a social constructionist perspective and (2) mathematical modelling of paternalistic and shared decision making in the management of hypertension in a random age and sex stratified community sample of residents of south east Northumberland, UK. It is concluded that there may be unintended effects on population health of incongruities in major components of public health policy. Greater public and patient engagement may militate against the disease prevention goals of evidence-based policy, and may better engage sections of the population who already benefit from greater access and better health associated with social status and opportunity, serving to increase inequalities by further marginalising those already suffering from relative exclusion.

The impact of the UK 'Act FAST' stroke awareness campaign: Content analysis of patients, witness and primary care clinicians' perceptions

BackgroundThe English mass media campaign ‘Act FAST’ aimed to raise stroke awareness and the need to call emergency services at the onset of suspected stroke. We examined the perceived impact and views of the campaign in target populations to identify potential ways to optimise mass-media interventions for stroke.MethodsAnalysis of semi-structured interviews conducted as part of two qualitative studies, which examined factors influencing patient/witness response to acute stroke symptoms (n = 19 stroke patients, n = 26 stroke witnesses) and perceptions about raising stroke awareness in primary care (n = 30 clinicians). Both studies included questions about the ‘Act FAST’ campaign. Interviews were content analysed to determine campaign awareness, perceived impact on decisions and response to stroke, and views of the campaign.ResultsMost participants were aware of the Act FAST campaign. Some patients and witnesses reported that the campaign impacted upon their stroke recognition and response, but the majority reported no impact. Clinicians often perceived campaign success in raising stroke awareness, but few thought it would change response behaviours. Some patients and witnesses, and most primary care clinicians expressed positive views towards the campaign. Some more critical participant comments included perceptions of dramatic, irrelevant, and potentially confusing content, such as a prominent ‘fire in the brain’ analogy.ConclusionsAct FAST has had some perceived impact on stroke recognition and response in some stroke patients and witnesses, but the majority reported no campaign impact. Primary care clinicians were positive about the campaign, and believed it had impacted on stroke awareness and recognition but doubted impact on response behaviour. Potential avenues for optimising and complementing mass media campaigns such as ‘Act FAST’ were identified.

Why People Do, or Do Not, Immediately Contact Emergency Medical Services following the Onset of Acute Stroke: Qualitative Interview Study

Objectives To identify the reasons why individuals contact, or delay contacting, emergency medical services in response to stroke symptoms. Design Qualitative interview study with a purposive sample of stroke patients and witnesses, selected according to method of accessing medical care and the time taken to do so. Data were analysed using the Framework approach. Setting Area covered by three acute stroke units in the north east of England. Participants Nineteen stroke patients and 26 witnesses who had called for help following the onset of stroke symptoms. Results Factors influencing who called emergency medical services and when they called included stroke severity, how people made sense of symptoms and their level of motivation to seek help. Fear of the consequences of stroke, including future dependence or disruption to family life, previous negative experience of hospitals, or involving a friend or relations in the decision to access medical services, all resulted in delayed admission. Lack of knowledge of stroke symptoms was also an important determinant. Perceptions of the remit of medical services were a major cause of delays in admission, with many people believing the most appropriate action was to telephone their GP. Variations in the response of primary care teams to acute stroke symptoms were also evident. Conclusions The factors influencing help-seeking decisions are complex. There remains a need to improve recognition by patients, witnesses and health care staff of the need to treat stroke as a medical emergency by calling emergency medical services, as well as increasing knowledge of symptoms of stroke among patients and potential witnesses. Fear, denial and reticence to impose on others hinders the process of seeking help and will need addressing specifically with appropriate interventions. Variability in how primary care services respond to stroke needs further investigation to inform interventions to promote best practice. Trial Registration UK Clinical Research Network UKCRN 6590

Realizing the promise of population biobanks: a new model for translation

The promise of science lies in expectations of its benefits to societies and is matched by expectations of the realisation of the significant public investment in that science. In this paper, we undertake a methodological analysis of the science of biobanking and a sociological analysis of translational research in relation to biobanking. Part of global and local endeavours to translate raw biomedical evidence into practice, biobanks aim to provide a platform for generating new scientific knowledge to inform development of new policies, systems and interventions to enhance the public’s health. Effectively translating scientific knowledge into routine practice, however, involves more than good science. Although biobanks undoubtedly provide a fundamental resource for both clinical and public health practice, their potentiating ontology—that their outputs are perpetually a promise of scientific knowledge generation—renders translation rather less straightforward than drug discovery and treatment implementation. Biobanking science, therefore, provides a perfect counterpoint against which to test the bounds of translational research. We argue that translational research is a contextual and cumulative process: one that is necessarily dynamic and interactive and involves multiple actors. We propose a new multidimensional model of translational research which enables us to imagine a new paradigm: one that takes us from bench to bedside to backyard and beyond, that is, attentive to the social and political context of translational science, and is cognisant of all the players in that process be they researchers, health professionals, policy makers, industry representatives, members of the public or research participants, amongst others.