Adapting the EQ-5D-3L for adults with mild to moderate learning disabilities.

BACKGROUND: Approximately 1.5 million adults in the UK have a learning disability. The difference between age at death for this group and the general population is 26 years for females and 22 years for males. The NHS Long Term Plan (January 2019) recognises learning disabilities as a clinical priority area. People with a learning disability are often excluded from research by design or lack of reasonable adjustments, and self-reported health status/health-related quality of life questionnaires such as the EQ-5D are often not appropriate for this population. Here, we systematically examine the EQ-5D-3L (its wording, content, and format) using qualitative methods to inform the adaption of the measure for use with adults with mild to moderate learning disabilities. METHODS: Think-aloud interviews with carers/advocates of learning-disabled adults were undertaken to explore the difficulties with completing the EQ-5D-3L. Alternative wording, language, structure, and images were developed using focus groups, stakeholder reference groups, and an expert panel. Data analysis followed a framework method. RESULTS: The dimensions and levels within the EQ-5D-3L were deemed appropriate for adults with mild to moderate learning disabilities. Consensus on wording, structure, and images was reached through an iterative process, and an adapted version of the EQ-5D-3L was finalised. CONCLUSION: The EQ-5D-3L adapted for adults with mild to moderate intellectual/learning disabilities can facilitate measurement of self-reported health status. Research is underway to assess the potential use of the adaptation for economic evaluation.

What helps people to reduce or stop self-harm? A systematic review and meta-synthesis of first-hand accounts.

BACKGROUND: Self-harm is an important public health problem but therapeutic interventions, particularly for people who have a history of multiple repetition, are not always taken up or effective when they are. The aim of this review is to explore first-hand accounts of what helps outside therapy and identify actions and processes, which can support the reduction or cessation of self-harm. METHODS: A systematic review and thematic meta-synthesis of the first-person accounts of what has helped to reduce or stop self-harm reported in primary studies. RESULTS: The meta-synthesis combined 546 participant excerpts from 56 studies. Two over-arching themes were identified: (i) breaking the chain incorporated actions taken to break the link between a person's current psychological or social state and the act of self-harm and (ii) building a new foundation for change captured actions over the longer-term, focusing on practical changes in relationships and in a person's way of life, such as work or living arrangements. CONCLUSIONS: The results emphasize the importance of interpersonal change in reducing or stopping self-harm. While interpersonal factors are acknowledged as important reasons behind self-harm, they are often under-represented in self-management advice and therapeutic interventions that focus on individual psychopathology.

Presenting life with cystic fibrosis: a Q-methodological approach to developing balanced, experience-based prenatal screening information.

BACKGROUND: Cystic fibrosis (CF) is one of the most common life-threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deliver about complex genetic conditions to support informed screening decisions can be challenging for health professionals. OBJECTIVE: To solicit views from those with personal experience with CF on which aspects of the condition they consider most important to include in prenatal screening materials. METHODS: Q-methodology; an approach to systematically explore variations in viewpoint that combines factor analytic techniques with qualitative approaches to pattern interpretation. SETTING AND PARTICIPANTS: Twelve adults with CF and 18 parents of affected children were recruited from a regional centre in the UK. RESULTS: Five distinct viewpoints on the items most and least important to include in screening information were identified: Factor 1 the normality of life with CF and increasing life expectancy; Factor 2 the hardships and reduced lifespan. Factor 3 medical interventions and the importance of societal support. Factor 4 longer-term consequences of CF. Factor 5 the ability to adjust to the condition. DISCUSSION: The identification of five different views on what represented the most and least important information to include about CF highlights the challenge of portraying a complex genetic condition in a balanced and accurate manner. Novel ways in which Q-methodology findings can be used to meet this challenge are presented.

Is advice incompatible with autonomous informed choice? Women's perceptions of advice in the context of antenatal screening: a qualitative study.

BACKGROUND: Patient autonomy in antenatal screening is a high priority for policy developers in many countries. OBJECTIVE: This paper presents women's understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice. DESIGN, SETTING AND PARTICIPANTS: The study was carried out in 2009 in the UK, using a qualitative approach. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi-structured interviews, which were analysed using framework analysis. RESULTS: Four themes were identified during the analysis: 'Meanings of advice in antenatal screening: the advice continuum', 'Recognition of the role of health professionals in decision making', 'Understandings of advice in the context of autonomous decision making' and 'Reasons given for wanting advice'. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of 'advice' ranged from information giving only to direction about screening choices. CONCLUSION: Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women's preference for care and adhere to a policy of non-directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices.

Explaining variation in Down's syndrome screening uptake: comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews.

BACKGROUND: The offer of prenatal Down's syndrome screening is part of routine antenatal care in most of Europe; however screening uptake varies significantly across countries. Although a decision to accept or reject screening is a personal choice, it is unlikely that the widely differing uptake rates across countries can be explained by variation in individual values alone.The aim of this study was to compare Down's syndrome screening policies and programmes in the Netherlands, where uptake is relatively low (<30%) with England and Denmark where uptake is higher (74 and > 90% respectively), in an attempt to explain the observed variation in national uptake rates. METHODS: We used a mixed methods approach with an embedded design: a) documentary analysis and b) expert stakeholder analysis. National central statistical offices and legal documents were studied first to gain insight in demographic characteristics, cultural background, organization and structure of healthcare followed by documentary analysis of primary and secondary sources on relevant documents on DSS policies and programme. To enhance interpretation of these findings we performed in-depth interviews with relevant expert stakeholders. RESULTS: There were many similarities in the demographics, healthcare systems, government abortion legislation and Down's syndrome screening policy across the studied countries. However, the additional cost for Down's syndrome screening over and above standard antenatal care in the Netherlands and an emphasis on the 'right not to know' about screening in this country were identified as potential explanations for the 'low' uptake rates of Down's syndrome screening in the Netherlands. The social context and positive framing of the offer at the service delivery level may play a role in the relatively high uptake rates in Denmark. CONCLUSIONS: This paper makes an important contribution to understanding how macro-level demographic, social and healthcare delivery factors may have an impact on national uptake rates for Down's syndrome screening. It has suggested a number of policy level and system characteristics that may go some way to explaining the relatively low uptake rates of Down's syndrome screening in the Netherlands when compared to England and Denmark.

Trust and acceptability of data-driven clinical recommendations in everyday practice: A scoping review.

BACKGROUND: Increasing attention is being given to the analysis of large health datasets to derive new clinical decision support systems (CDSS). However, few data-driven CDSS are being adopted into clinical practice. Trust in these tools is believed to be fundamental for acceptance and uptake but to date little attention has been given to defining or evaluating trust in clinical settings. OBJECTIVES: A scoping review was conducted to explore how and where acceptability and trustworthiness of data-driven CDSS have been assessed from the health professional's perspective. METHODS: Medline, Embase, PsycInfo, Web of Science, Scopus, ACM Digital, IEEE Xplore and Google Scholar were searched in March 2022 using terms expanded from: "data-driven" AND "clinical decision support" AND "acceptability". Included studies focused on healthcare practitioner-facing data-driven CDSS, relating directly to clinical care. They included trust or a proxy as an outcome, or in the discussion. The preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) is followed in the reporting of this review. RESULTS: 3291 papers were screened, with 85 primary research studies eligible for inclusion. Studies covered a diverse range of clinical specialisms and intended contexts, but hypothetical systems (24) outnumbered those in clinical use (18). Twenty-five studies measured trust, via a wide variety of quantitative, qualitative and mixed methods. A further 24 discussed themes of trust without it being explicitly evaluated, and from these, themes of transparency, explainability, and supporting evidence were identified as factors influencing healthcare practitioner trust in data-driven CDSS. CONCLUSION: There is a growing body of research on data-driven CDSS, but few studies have explored stakeholder perceptions in depth, with limited focused research on trustworthiness. Further research on healthcare practitioner acceptance, including requirements for transparency and explainability, should inform clinical implementation.

Differences in the perceived role of the healthcare provider in delivering vascular health checks: a Q methodology study.

BACKGROUND: The UK Department of Health introduced the National Health Service (NHS) Health Check Programme in April 2009 in an attempt to improve primary and secondary prevention of cardiovascular disease in the UK population and to reduce health inequalities. Healthcare professionals' attitudes towards giving lifestyle advice will influence how they interact with patients during consultations. We therefore sought to identify the attitudes of primary care healthcare professionals towards the delivery of lifestyle advice in the context of the NHS Health Check Programme. METHODS: Fifty-two primary care healthcare professionals undertook a Q sort with 36 statements that represented a range of viewpoints about the importance of lifestyle change, medication, giving lifestyle advice in the primary care setting, and the individual, social and material factors that might impact on lifestyle related behaviour change. Sorts were analysed by-person using principal components analysis and varimax rotation. RESULTS: Five statistically independent factors (accounts) reflected distinct views on the topic. Account 1 was supportive of initiatives like the NHS Health Check, and emphasised the importance of professionals working collaboratively with patients to facilitate lifestyle change. Account 2 expressed views on the potential overuse of statin medication and placed responsibility for lifestyle change with the patient. Account 3 viewed the healthcare professional role to be one of educator, emphasising the provision of information. Account 4 perceived lifestyle change to be difficult for patients and emphasised the need for healthcare professionals to be role models. Account 5 was inconsistent about the value of lifestyle change, or the role of healthcare professionals in promoting it, a finding that may be due to ambivalence about the health check or to lack of engagement with the Q sort task. We found no strong associations between any of the factors and, gender, role, age or ethnicity. CONCLUSIONS: Our findings suggest that healthcare professionals hold viewpoints that may influence how they interact with patients during health checks. When implementing programmes like the NHS Health Check, it would be useful to take healthcare professionals' views into account. Attitudes and beliefs could be explored during training sessions, for example.

Communication coaching for sonographers (CCS): Preliminary evaluation of a novel intervention to improve unexpected news delivery.

Objective: Obstetric ultrasound scans provide real-time results. In some organisations and countries, the immediate communication of results by sonographers to patients is standard practice, but there is a lack of evidence-based training to support them with this challenging task. This pilot study evaluated a novel communication coaching intervention to improve sonographer communication. Methods: Coaches met with sonographers(N = 15) three times. Sonographers collected three audio recordings of scans involving unexpected news communication at baseline(R1), post-Session 1(R2) and post-Session 2(R3), which were rated for communication skills. Participants self-reported communication confidence and burnout before(T1) and after(T2) the intervention. Feedback was collected at T2. Data were analysed using paired-samples t-tests with bootstrapped significance estimates. Results: N = 10 sonographers completed the intervention. There were significant increases in communication skills(R1 m = 4.85, SD = 1.07; R3 m = 6.73, SD = 1.80, p = 0.003) and communication confidence(T1 m = 28.00, SD = 6.27; T2 m = 32.80, SD = 6.05, p = 0.005). There were no significant changes in burnout(p > 0.05). All respondents said they would recommend the intervention and most strongly agreed it was engaging(n = 8; 89%) and imparted useful skills(n = 8; 89%). Conclusion: Communication coaching is an acceptable, potentially effective tool for improving communication of unexpected news by sonographers in ultrasound. Innovation: This is the first evaluation of an intervention to support obstetric sonographers with news delivery.

Ten years of NIHR research training: perceptions of the programmes: a qualitative interview study.

OBJECTIVES: The UK National Institute for Health Research (NIHR) training programmes were created to build and sustain research capacity in healthcare. Following the training programme 10-year strategic review, this qualitative study aimed to deepen understanding of facilitators and barriers for those progressing through NIHR-supported research careers. DESIGN: Semistructured qualitative study. DATA COLLECTION AND ANALYSIS: Telephone interviews conducted between May and August 2017 were digitally recorded, transcribed and analysed using Framework Approach. SETTING: UK National Health Service (NHS) Trusts, university medical schools, District General Hospitals, Integrated Academic Training Programme centres and Research Design Services across the North East, North West, South East and South West of England, London and the Midlands. PARTICIPANTS: Fourteen women and eight men, of whom, 14 were previous or current NIHR personal awardees (seven doctors and seven allied health professionals (AHPs) or nurses) and eight were managers (staff within clinical or university training-related roles). RESULTS: (1) NIHR awards were viewed as transformative for research careers; (2) however, there were perceptions of a biased 'playing field'. (3) Inequalities were perceived for AHPs and nurses, those outside of established research institutes and those in 'unfashionable' specialisms. (4) While support for NIHR awards contributed to a healthy research culture, (5) short-term awards were perceived as a barrier to continuing an independent research career. CONCLUSIONS: Participants perceived many strengths of the NIHR training programmes in terms of developing individual careers and research capacity. Areas in which improvement could enhance the ability to attract, develop and retain researcher were identified. Our findings are of relevance to schemes in other countries, where healthcare researchers experience similar challenges. Further work is needed to overcome barriers and ensure equity of access to, and success within, clinical research training schemes to sustain the research workforce needed to address future global health challenges.

Mentoring as an intervention to promote gender equality in academic medicine: a systematic review.

BACKGROUND: Mentoring is frequently suggested as an intervention to address gender inequalities in the workplace. OBJECTIVES: To systematically review evidence published since a definitive review in 2006 on the effectiveness of mentoring interventions aimed at achieving gender equality in academic medicine. DESIGN: Systematic Review, using the Template for Intervention Description and Replication as a template for data extraction and synthesis. SAMPLE: Studies were included if they described a specific mentoring intervention in a medical school or analogous academic healthcare organisation and included results from an evaluation of the intervention. ELIGIBILITY CRITERIA: Mentoring was defined as (1) a formally organised intervention entailing a supportive relationship between a mentor, defined as a more senior/experienced person and a mentee defined as a more junior/inexperienced person; (2) mentoring intervention involved academic career support (3) the mentoring relationship was outside line management or supervision of performance and was defined by contact over an extended period of time. OUTCOMES: The impact of mentoring was usually reported at the level of individual participants, for example, satisfaction and well-being or self-reported career progression. We sought evidence of impact on gender equality via reports of organisation-level effectiveness, of promotion or retention, pay and academic performance of female staff. RESULTS: We identified 32 publications: 8 review articles, 20 primary observational studies and 4 randomised controlled trials. A further 19 discussed mentoring in relation to gender but did not meet our eligibility criteria. The terminology used, and the structures and processes reported as constituting mentoring, varied greatly. We identified that mentoring is popular with many who receive it; however, we found no robust evidence of effectiveness in reducing gender inequalities. Primary research used weak evaluation designs. CONCLUSIONS: Mentoring is a complex intervention. Future evaluations should adopt standardised approaches used in applied health research to the design and evaluation of effectiveness and cost-effectiveness.

Understanding the functions of repeated self-harm: A Q methodology approach.

BACKGROUND: Multiple repetition of self-harm is common and is associated with poor quality of life and with an increased risk of suicide. Treatment outside specialist clinics rarely takes account of what is known about the varied and conflicting reasons for multiple repetition. We aimed to identify ways in which individuals who self-harm make sense of their motivations for repetition. METHODS: In 2018/2019 we recruited 59 participants from NHS services, support organizations in England and via social media into a Q-methodology study. Participants sorted, ranked and commented on 46 separate functions of self-harm according to whether they agreed or disagreed with them as reasons for their own self-harm. The functions were identified from a range of academic sources and first-person accounts. RESULTS: Principal Component Analysis was used to identify four distinct accounts for repeated self-harm: 1) Managing my mental state, 2) Communicating Distress, 3) Distract from suicidal thoughts or feelings and 4) Producing positive feelings. There were no clear links between account and gender or other respondent characteristic, although those who self-harmed most regularly and frequently ('so many times I've lost count') were mostly in Accounts 1 and 4. CONCLUSIONS: This is the first study to use Q methodology to explore reasons for repeated self-harm. The accounts identified can help in personalizing therapy by going beyond models that focus on a single function such as affect regulation or experiential avoidance, while reducing the field to a manageable number of points of view that can be explored in therapy.

Developing and feasibility testing of data collection methods for an economic evaluation of a supported selfmanagement programme for adults with a learning disability and type 2 diabetes.

BACKGROUND: The challenges of conducting research with hard to reach vulnerable groups are particularly pertinent for people with learning disabilities. Data collection methods for previous cost and cost-effectiveness analyses of health and social care interventions targeting people with learning disabilities have relied on health care/health insurance records or data collection forms completed by the service provider rather than by people with learning disabilities themselves. This paper reports on the development and testing of data collection methods for an economic evaluation within a randomised controlled trial (RCT) for a supported self-management programme for people with mild/moderate learning disabilities and type 2 diabetes. METHODS: A case finding study was conducted to identify types of health and social care use and data collection methods employed in previous studies with this population. Based on this evidence, resource use questionnaires for completion by GP staff and interviewer-administered participant questionnaires (covering a wider cost perspective and health-related quality of life) were tested within a feasibility RCT. Interviewer-administered questionnaires included the EQ-5D-3L (the NICE recommended measure for use in economic evaluation). Participants were adults > 18 years with a mild or moderate learning disability and type 2 diabetes, with mental capacity to give consent to research participation. RESULTS: Data collection for questionnaires completed by GP staff requesting data for the last 12 months proved time intensive and difficult. Whilst 82.3% (121/147) of questionnaires were returned, up to 17% of service use items were recorded as unknown. Subsequently, a shorter recall period (4 months) led to a higher return rate but with a higher rate of missing data. Missing data for interviewer-administered participant questionnaires was > 8% but the interviewers reported difficulty with participant recall. Almost 60% (48/80) of participants had difficulty completing the EQ-5D-3L. CONCLUSIONS: Further investigation as to how service use can be recorded is recommended. Concerns about the reliability of identifying service use data directly from participants with a learning disability due to challenges in completion, specifically around recall, remain. The degree of difficulty to complete EQ-5D-3L indicates concerns regarding the appropriateness of using this measure in its current form in research with this population. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41897033 (registered 21 January 2013).

The lure of 'patient choice'.

As primary care practitioners are the health professionals closest to patients' everyday lives, they are most likely to experience the impact of policies that support the patient choice agenda. The government's approach to increasing patient choice has been subject to criticism by those sceptical of its politics and by those concerned with its influence on health providers and some patient groups. A perspective missing from the debate is one informed by research on the psychology of choice. Some psychologists have argued that a seemingly inbuilt preference for choice can adversely affect the decision-making process and that presenting healthcare decisions as choices may result in less reasoned decision making. It is important that GPs encourage patients to make reasoned healthcare decisions that are informed by an evaluation of the options rather than by a simple preference for choice. Patients are likely to be less satisfied with, and experience more regret about, choices made without reasoning.

Good practice or positive action? Using Q methodology to identify competing views on improving gender equality in academic medicine.

OBJECTIVES: The number of women entering medicine has increased significantly, yet women are still under-represented at senior levels in academic medicine. To support the gender equality action plan at one School of Medicine, this study sought to (1) identify the range of viewpoints held by staff on how to address gender inequality and (2) identify attitudinal barriers to change. DESIGN: Q methodology. 50 potential interventions representing good practice or positive action, and addressing cultural, organisational and individual barriers to gender equality, were ranked by participants according to their perception of priority. SETTING: The School of Medicine at the University of Leeds, UK. PARTICIPANTS: Fifty-five staff members were purposively sampled to represent gender and academic pay grade. RESULTS: Principal components analysis identified six competing viewpoints on how to address gender inequality. Four viewpoints favoured positive action interventions: (1) support careers of women with childcare commitments, (2) support progression of women into leadership roles rather than focus on women with children, (3) support careers of all women rather than just those aiming for leadership, and (4) drive change via high-level financial and strategic initiatives. Two viewpoints favoured good practice with no specific focus on women by (5) recognising merit irrespective of gender and (6) improving existing career development practice. No viewpoint was strongly associated with gender, pay grade or role; however, latent class analysis identified that female staff were more likely than male to prioritise the setting of equality targets. Attitudinal barriers to the setting of targets and other positive action initiatives were identified, and it was clear that not all staff supported positive action approaches. CONCLUSIONS: The findings and the approach have utility for those involved in gender equality work in other medical and academic institutions. However, the impact of such initiatives needs to be evaluated in the longer term.

Understandings of Down's syndrome: a Q methodological investigation.

Down's syndrome has been, and continues to be, a central focus of prenatal testing technology. However, there has been surprisingly little examination of how parental understandings of the condition relate to prenatal testing choices. This study, carried out at the University of Leeds, uses Q methodology to identify 'competing equivalent stories' of Down's syndrome and to highlight the shared and distinct themes within these stories. Seventy-six people were selected as being likely to represent a diverse range of views about Down's syndrome, approximately half of whom had some known experience or expertise related either to the condition or to prenatal testing. The participants were asked to Q sort 50 propositions about Down's syndrome that were selected to reflect different views about the condition in terms of its impact on the affected person, on families with an affected child, and on society. Using Principal Components Analysis, five statistically independent factors were extracted that reflected a range of views towards, and experiences of, people with Down's syndrome. Despite a virtual consensus about the rights of existing people with Down's syndrome to healthcare, an education, and inclusion in their community, there were significant differences in how participants believed they personally would adjust to an affected child. Furthermore, whether or not people with Down's syndrome were seen to be within 'a continuum of normality' sheds light on how views about the condition may be linked to views about prenatal testing and termination of pregnancy. The study demonstrates that people hold complex and sometimes seemingly contradictory views about Down's syndrome, and that these are likely to influence their prenatal testing decisions. Antenatal settings currently provide little opportunity for people to discuss and explore their beliefs about disability. It is argued that this may affect the ability of some individuals to make decisions that are informed by their own views and values.

Supported self-management for adults with type 2 diabetes and a learning disability (OK-Diabetes): study protocol for a randomised controlled feasibility trial.

BACKGROUND: Individuals with a learning disability (LD) are at higher risk of developing type 2 diabetes, but LD is not straightforward to define or identify, especially at the milder end of the spectrum, which makes case finding difficult. While supported self-management of health problems is now established, current material is largely educational and didactic with little that facilitates behavioural change. The interaction between the person with diabetes and others supporting their care is also largely unknown. For these reasons, there is considerable work needed to prepare for a definitive trial. The aim of this paper is to publish the abridged protocol of this preparatory work. METHODS/DESIGN: Phase I is a prospective case-finding study (target n = 120 to 350) to identify and characterise potential participants, while developing a standardised supported self-management intervention. Phase II is a randomised feasibility trial (target n = 80) with blinded outcome assessment. Patients identified in Phase I will be interviewed and consented prior to being randomised to (1) standard treatment, or (2) supported self-management. Both arms will also be provided with an 'easy read' accessible information resource on managing type 2 diabetes. The intervention will be standardised but delivered flexibly depending on patient need, including components for the participant, a supporter, and shared activities. Outcomes will be (i) robust estimates of eligibility, consent and recruitment rates with refined recruitment procedures; (ii) characterisation of the eligible population; (iii) a standardised intervention with associated written materials, (iv) adherence and negative outcomes measures; (v) preliminary estimates of adherence, acceptability, follow-up and missing data rates, along with refined procedures; and (vi) description of standard treatment. DISCUSSION: Our study will provide important information on the nature of type 2 diabetes in adults with LD living in the community, on the challenges of identifying those with milder LD, and on the possibilities of evaluating a standardised intervention to improve self-management in this population. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41897033 (registered 21 January 2013).

Midwives' perceptions of their role as facilitators of informed choice in antenatal screening.

OBJECTIVE: to explore midwives' perceptions of their role as facilitators of informed choice in antenatal screening. DESIGN: qualitative. SETTING: community midwives, Yorkshire and Humber region, UK. PARTICIPANTS: community midwives offering antenatal screening (n=15). METHOD: semi-structured interviews analysed using Thematic Analysis. FINDINGS: to facilitate informed choice, midwives highlighted both the importance and challenges of engaging in discussion with women, remaining non-directive, within tight timeframes, sometimes with women unable to communicate in English or with complex social needs. CONCLUSION: midwives varied in the degree to which they believed it was their role to (1) discuss rather than just provide information and (2) to check women's understanding of the information provided. Midwives were concerned about the constraints imposed by first trimester combined screening in terms of the limited time in which they had to facilitate informed choice and the women had to make a decision about screening. To ensure that women understand the options available to them and are able to exercise an informed choice, clinical guidelines are needed that set out how midwives can actively facilitate informed screening choices without compromising patient autonomy. This is especially important given the small 'window of opportunity' within which combined first trimester screening is a viable option.

Experiences of parents with a child with Down syndrome in Pakistan and their views on termination of pregnancy.

It has been argued that Down syndrome (DS) is as much a cultural creation as a biomedical condition, yet the majority of research in this area has been conducted in 'Western' cultures. This study explored parents' experiences of their child with DS in Pakistan and their views on abortion for the condition. Thirty mothers and fathers of children with DS took part in qualitative interviews. Transcripts were thematically analysed. Parents used Islamic discourse to frame positive personal meanings of their child's condition. These were contrasted with personal experiences of stigmatisation and rejection by family and community. An ambivalent cultural stereotype was revealed that characterised people with DS as abnormal and objects of pity but also as being closer to God and bringers of good fortune. Views on termination varied, but parents were generally supportive of the availability of abortion for DS due to the social stigmatisation they experienced. The findings reveal how parents negotiated their religious beliefs alongside personal experiences to inform personal views on abortion for DS. Advice to other parents about termination was rooted in Islamic discourse but emphasised pragmatic concerns about the impact of having a family member with intellectual disability in Pakistan.

Interpretations of informed choice in antenatal screening: a cross-cultural, Q-methodology study.

Informed choice is internationally recognised and accepted as an important aspect of ethical healthcare. In the U.K., NHS antenatal screening policies state that their primary aim is to facilitate reproductive informed choices. These policies, implemented within a multiethnic population, are largely guided by the ethical principle of autonomy. This study was carried out in 2009 in the U.K. and used Q-methodology to explore diversity in the value attached to autonomous informed choice in antenatal screening for genetic disorders and similarities and differences in this value in women from different ethnic origins. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin completed a 41-statement Q-sort in English, French, Mandarin or Urdu. Q-Factor analysis produced five statistically independent viewpoints of the value of informed choice: choice as an individual right; choice informed by religious values; choice as a shared responsibility; choice advised by health professionals; and choice within the family context. The findings show that women hold a variety of views on the nature of informed choice, and that, contradictory to policies of autonomous informed choice, many women seek and value the advice of health professionals. The findings have implications for the role of health professionals in facilitating informed choice, quality of care and equity of access.

'All is done by Allah'. Understandings of Down syndrome and prenatal testing in Pakistan.

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the 'will of God' was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more 'scientific worldview' of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.