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1.  Introducing genetic testing for cardiovascular disease in primary care: a qualitative study 
The British Journal of General Practice  2014;64(622):e282-e289.
While primary care systematically offers conventional cardiovascular risk assessment, genetic tests for coronary heart disease (CHD) are increasingly commercially available to patients. It is unclear how individuals may respond to these new sources of risk information.
To explore how patients who have had a recent conventional cardiovascular risk assessment, perceive additional information from genetic testing for CHD.
Design and setting
Qualitative interview study in 12 practices in Nottinghamshire from both urban and rural settings.
Interviews were conducted with 29 adults, who consented to genetic testing after having had a conventional cardiovascular risk assessment.
Individuals’ principal motivation for genetic testing was their family history of CHD and a desire to convey the results to their children. After testing, however, there was limited recall of genetic test results and scepticism about the value of informing their children. Participants dealt with conflicting findings from the genetic test, family history, and conventional assessment by either focusing on genetic risk or environmental lifestyle factors. In some participants, genetic test results appeared to reinforce healthy behaviour but others were falsely reassured, despite having an ‘above-average’ conventional cardiovascular risk score.
Although genetic testing was acceptable, participants were unclear how to interpret genetic risk results. To facilitate healthy behaviour, health professionals should explore patients’ understanding of genetic test results in light of their family history and conventional risk assessment.
PMCID: PMC4001138  PMID: 24771842
coronary heart disease; family practice; genetic testing; primary health care
2.  Perspectives on enhancing physical activity and diet for health promotion among at-risk urban UK South Asian communities: a qualitative study 
BMJ Open  2015;5(2):e007317.
To explore perspectives on enhancing physical activity and diet among South Asians in urban deprived communities at high risk of chronic disease and to inform development of culturally appropriate health promotion intervention.
Qualitative study using semistructured one-to-one and family group interviews with thematic analysis of data.
Urban disadvantaged communities in the East Midlands of the UK.
45 respondents, including 34 people of South Asian origin (16 at-risk individuals, six family groups involving 18 relatives), of mainly Pakistani and Indian origin, including 16 non-English speakers; and 11 health professionals working locally with communities of concern.
South Asian participants underlined the challenges of requiring family members across generations to engage in modifying dietary behaviours, and the central role of communal eating of traditional ‘Asian’ food in their cultural lives. Barriers to increasing physical activity included cost, personal safety and lack of time outside of long working hours and carer commitments. However, increasing walking activity was regarded as feasible by both community and health professional participants. Respondents emphasised using a social approach for potential interventions, undertaking activity with family or friends and with bilingual community peers to facilitate engagement, motivation and support. Spoken content and delivery of interventions was favoured, including personal stories and multilingual audio–visual information; within local informal rather than provider settings, including the home; and aided by pedometers for self-monitoring.
Focusing on physical activity by increasing walking may hold promise as health promotion in this deprived South Asian community context. Further intervention development, with exploration of feasibility and acceptability of the social approach and elements suggested, is merited.
PMCID: PMC4346672  PMID: 25724983
3.  Could Triaging Family History of Cancer during Palliative Care Enable Earlier Genetic Counseling Intervention? 
Journal of Palliative Medicine  2013;16(11):1350-1355.
Patients are commonly referred to cancer genetics services when all affected family members are deceased. This makes genetic testing and risk assessment more difficult, reducing the benefit from screening and prophylactic treatment.
Observational, retrospective, cohort study of 508 randomly selected patients referred to a regional cancer genetics unit, using review of case notes to explore whether a simple clinical “3, 2, 1” family history rule could have been used to improve timely and appropriate referrals for genetic assessment. The 3, 2, 1 criteria are: three affected relatives with the same/associated cancers, across two generations, with at least one person affected age <50 years.
Most (71% [362]) genetic risk assessment referrals were in unaffected individuals and 22% (80) of these were referred after all affected family members had died, including 24% (19) who lost their last remaining affected relative in the previous year. Most (59% [301]) referrals met all 3, 2, 1 criteria, and 67% of these could have been made earlier in clinical practice. A further 23% (115) met two of the three criteria.
Using a simple “3, 2, 1” family rule in cancer care and particularly in palliative care could enable earlier cancer genetic risk assessment for unaffected relatives, improving the potential to benefit from targeted screening and intervention.
PMCID: PMC3822399  PMID: 24063552
6.  What hinders minority ethnic access to cancer genetics services and what may help? 
Ethnic disparities in use of cancer genetics services raise concerns about equitable opportunity to benefit from familial cancer risk assessment, improved survival and quality of life. This paper considers available research to explore what may hinder or facilitate minority ethnic access to cancer genetics services. We sought to inform service development for people of South Asian, African or Irish origin at risk of familial breast, ovarian, colorectal and prostate cancers in the UK. Relevant studies from the UK, North America and Australasia were identified from six electronic research databases. Current evidence is limited but suggests low awareness and understanding of familial cancer risk among minority ethnic communities studied. Socio-cultural variations in beliefs, notably stigma about cancer or inherited risk of cancer, are identified. These factors may affect seeking of advice from providers and disparities in referral. Achieving effective cross-cultural communication in the complex contexts of both cancer and genetics counselling, whether between individuals and providers, when mediated by third party interpreters, or within families, pose further challenges. Some promising experience of facilitating minority ethnic access has been gained by introduction of culturally sensitive provider and counselling initiatives, and by enabling patient self-referral. However, further research to inform and assess these interventions, and others that address the range of challenges identified for cancer genetics services are needed. This should be based on a more comprehensive understanding of what happens at differing points of access and interaction at community, cancer care and genetic service levels.
PMCID: PMC4060110  PMID: 24253862
minority ethnic; cancer genetics; familial cancer; access
7.  Levonorgestrel-Releasing Intrauterine System vs. Usual Medical Treatment for Menorrhagia: An Economic Evaluation Alongside a Randomised Controlled Trial 
PLoS ONE  2014;9(3):e91891.
To undertake an economic evaluation alongside the largest randomised controlled trial comparing Levonorgestrel-releasing intrauterine device (‘LNG-IUS’) and usual medical treatment for women with menorrhagia in primary care; and compare the cost-effectiveness findings using two alternative measures of quality of life.
571 women with menorrhagia from 63 UK centres were randomised between February 2005 and July 2009. Women were randomised to having a LNG-IUS fitted, or usual medical treatment, after discussing with their general practitioner their contraceptive needs or desire to avoid hormonal treatment. The treatment was specified prior to randomisation. For the economic evaluation we developed a state transition (Markov) model with a 24 month follow-up. The model structure was informed by the trial women's pathway and clinical experts. The economic evaluation adopted a UK National Health Service perspective and was based on an outcome of incremental cost per Quality Adjusted Life Year (QALY) estimated using both EQ-5D and SF-6D.
Using EQ-5D, LNG-IUS was the most cost-effective treatment for menorrhagia. LNG-IUS costs £100 more than usual medical treatment but generated 0.07 more QALYs. The incremental cost-effectiveness ratio for LNG-IUS compared to usual medical treatment was £1600 per additional QALY. Using SF-6D, usual medical treatment was the most cost-effective treatment. Usual medical treatment was both less costly (£100) and generated 0.002 more QALYs.
Impact on quality of life is the primary indicator of treatment success in menorrhagia. However, the most cost-effective treatment differs depending on the quality of life measure used to estimate the QALY. Under UK guidelines LNG-IUS would be the recommended treatment for menorrhagia. This study demonstrates that the appropriate valuation of outcomes in menorrhagia is crucial.
PMCID: PMC3956766  PMID: 24638071
8.  Enhancing consultations with interpreters: learning more about how 
PMCID: PMC3553612  PMID: 23561659
9.  Effectiveness of physical activity and dietary interventions in South Asian populations: a systematic review 
The British Journal of General Practice  2013;63(607):e104-e114.
Physical activity and dietary change interventions can prevent or delay a range of chronic disease. Little is known in primary care about their effectiveness in South Asian populations, who are often at higher risk of developing such diseases.
To assess evidence for effectiveness of primary care based physical activity and dietary interventions in South Asian populations, and identify methods to inform future intervention development.
Systematic review.
Intervention studies conducted in developed countries that reported data for South Asian adults were sought by searching electronic databases, trial registries, and conference proceedings. Following wider screening of titles and abstracts, 119 full articles were reviewed.
Of the 119 articles, four studies met the inclusion criteria and evaluated community-based interventions with South Asian individuals. Methodological quality was poor overall. Interventions appeared generally effective in promoting a decrease in weight, with some positive changes in blood pressure and biochemical outcomes, such as cholesterol. There was limited evidence for effects on behaviour. Theoretical frameworks were not identified and evidence on attitudinal or knowledge-based outcomes was sparse. The inclusion of individual feedback and community workers in communities of deprivation appeared important to the acceptability of the interventions. Information distinguishable for South Asian individuals within intervention studies of general populations was lacking.
Physical activity and dietary interventions with South Asian populations show modest promise but, given the paucity of controlled evaluations or use of objective measures, outcomes are difficult to interpret. Potential insights may be missed if experience concerning South Asian groups within studies is not reported. Further development of culturally appropriate interventions that are theoretically informed and assessed in experimental designs are required.
PMCID: PMC3553636  PMID: 23561688
community; dietary change, physical activity; primary care; South Asian; systematic review
10.  Availability and Quality of Coronary Heart Disease Family History in Primary Care Medical Records: Implications for Cardiovascular Risk Assessment 
PLoS ONE  2014;9(1):e81998.
The potential to use data on family history of premature disease to assess disease risk is increasingly recognised, particularly in scoring risk for coronary heart disease (CHD). However the quality of family health information in primary care records is unclear.
To assess the availability and quality of family history of CHD documented in electronic primary care records
Cross-sectional study
537 UK family practices contributing to The Health Improvement Network database.
Data were obtained from patients aged 20 years or more, registered with their current practice between 1st January 1998 and 31st December 2008, for at least one year. The availability and quality of recorded CHD family history was assessed using multilevel logistic and ordinal logistic regression respectively.
In a cross-section of 1,504,535 patients, 19% had a positive or negative family history of CHD recorded. Multilevel logistic regression showed patients aged 50–59 had higher odds of having their family history recorded compared to those aged 20–29 (OR:1.23 (1.21 to 1.25)), however most deprived patients had lower odds compared to those least deprived (OR: 0.86 (0.85 to 0.88)). Of the 140,058 patients with a positive family history recorded (9% of total cohort), age of onset was available in 45%; with data specifying both age of onset and relative affected available in only 11% of records. Multilevel ordinal logistic regression confirmed no statistical association between the quality of family history recording and age, gender, deprivation and year of registration.
Family history of CHD is documented in a small proportion of primary care records; and where positive family history is documented the details are insufficient to assess familial risk or populate cardiovascular risk assessment tools. Data capture needs to be improved particularly for more disadvantaged patients who may be most likely to benefit from CHD risk assessment.
PMCID: PMC3886986  PMID: 24416135
11.  Opportunities and challenges for enhancing preconception health in primary care: qualitative study with women from ethnically diverse communities 
BMJ Open  2013;3(7):e002977.
 There is a growing interest in developing and offering more systematic preconception healthcare. However, it is unclear how this might be regarded by ethnically diverse communities at higher risk of poor maternal and child health outcomes. We sought to explore perceptions about preconception health and care among women from these communities to identify opportunities and challenges for intervention development in primary care.
Qualitative study using focus groups and semistructured interviews.
Ethnically diverse and socially disadvantaged community settings of the UK.
41 women aged 18–45 years, of Pakistani, Indian, Caribbean, African, White and mixed ethnic origin, participating in nine focus groups, half of whom (n=19) had one-to-one follow-up telephone interviews.
Women had modest or poor awareness of preconception health issues. They perceived these could be addressed in primary care, particularly if raised within a range of clinically ‘relevant’ consultations, such as for contraception, or when opportune for individuals in their social context. However, challenges for engaging women in preconception care more routinely were underlined. These included little prevailing culture of preparing for pregnancy and the realities of their pregnancies often being unplanned; and, for those planning pregnancy, sensitivity and maintaining secrecy when trying to conceive. A preference for female professionals, engaging men, and enhancing access for younger people or women less disposed to general practice, in educational and other settings were highlighted.
Raising preconception health when this has heightened clinical or social resonance for women may hold promise for initiating more systematic intervention. In primary care this could offer greater potential to directly engage those with low awareness or not considering pregnancy, while enlarging opportunity for others who may be seeking to conceive. Promoting ‘preparation for pregnancy’ more widely might form part of healthcare and education over the life course. Further intervention development research exploring these possibilities, including their feasibility and acceptability is needed.
PMCID: PMC3731794  PMID: 23883884
Primary Care; Qualitative Research; Public Health; Preventive Medicine
12.  Persistent frequent attenders in primary care: costs, reasons for attendance, organisation of care and potential for cognitive behavioural therapeutic intervention 
BMC Family Practice  2012;13:39.
The top 3% of frequent attendance in primary care is associated with 15% of all appointments in primary care, a fivefold increase in hospital expenditure, and more mental disorder and functional somatic symptoms compared to normal attendance. Although often temporary if these rates of attendance last more than two years, they may become persistent (persistent frequent or regular attendance). However, there is no long-term study of the economic impact or clinical characteristics of regular attendance in primary care. Cognitive behaviour formulation and treatment (CBT) for regular attendance as a motivated behaviour may offer an understanding of the development, maintenance and treatment of regular attendance in the context of their health problems, cognitive processes and social context.
A case control design will compare the clinical characteristics, patterns of health care use and economic costs over the last 10 years of 100 regular attenders (≥30 appointments with general practitioner [GP] over 2 years) with 100 normal attenders (6–22 appointments with GP over 2 years), from purposefully selected primary care practices with differing organisation of care and patient demographics. Qualitative interviews with regular attending patients and practice staff will explore patient barriers, drivers and experiences of consultation, and organisation of care by practices with its challenges. Cognitive behaviour formulation analysed thematically will explore the development, maintenance and therapeutic opportunities for management in regular attenders. The feasibility, acceptability and utility of CBT for regular attendance will be examined.
The health care costs, clinical needs, patient motivation for consultation and organisation of care for persistent frequent or regular attendance in primary care will be explored to develop training and policies for service providers. CBT for regular attendance will be piloted with a view to developing this approach as part of a multifaceted intervention.
PMCID: PMC3390898  PMID: 22607525
High utilisers of care; Primary care; Cognitive behavior therapy; Hypochondriasis; Somatoform disorders; Health care economics and organizations
13.  Principles for research on ethnicity and health: the Leeds Consensus Statement 
Background: There is substantial evidence that health and health-care experiences vary along ethnic lines and the need to understand and tackle ethnic health inequalities has repeatedly been highlighted. Research into ethnicity and health raises ethical, theoretical and methodological issues and, as the volume of research in this area grows, so too do concerns regarding its scientific rigour and reporting, and its contribution to reducing inequalities. Guidance may be helpful in encouraging researchers to adopt standard practices in the design, conduct and reporting of research. However, past efforts at introducing such guidance have had limited impact on research practice, and the diversity of disciplinary perspectives on the key challenges and solutions may undermine attempts to derive and promote guiding principles. Methods: A consensus building Delphi exercise—the first of its kind in this area of research practice—was undertaken with leading academics, practitioners and policymakers from a broad range of disciplinary backgrounds to assess whether consensus on key principles could be achieved. Results: Ten key principles for conducting research on ethnicity and health emerged, covering: the aims of research in this field; how such research should be framed and focused; key design-related considerations; and the direction of future research. Despite some areas of dispute, participants were united by a common concern that the generation and application of research evidence should contribute to better health-care experiences and health outcomes for minority ethnic people. Conclusion: The principles provide a strong foundation to guide future ethnicity-related research and build a broader international consensus.
PMCID: PMC3662014  PMID: 22552261
14.  ‘Over-the-counter’ genetic testing: what does it really mean for primary care? 
The publication of More Genes Direct by the Human Genetics Commission is a timely reminder of the potential impact that ‘over-the-counter’ genetic testing (that is, a direct genetic test without the need for a medical referral) may have on the NHS. This article considers the relevance of current genetic research on complex common diseases and how this might translate into risk estimates for developing conditions such as dementia, cancer, and cardiovascular disease. The implications for primary care include the need to understand the current limitations of genetic testing and its commercial application over the counter, and the importance of continuing to make risk assessments using family history. The authors recommend caution in the premature introduction of over-the-counter testing without a sound evidence base.
PMCID: PMC2662103  PMID: 19341543
general practice; genetics; genetic testing; over-the counter
15.  Mirena® coil for heavy menstrual bleeding 
PMCID: PMC2593539  PMID: 19068163
16.  Realising the potential of the family history in risk assessment and primary prevention of coronary heart disease in primary care: ADDFAM study protocol 
Coronary heart disease (CHD) is the leading cause of death in the developed world, and its prevention a core activity in current UK general practice. Currently, family history is not systematically integrated into cardiovascular risk assessment in the UK, Europe or the US. Further, primary health care professionals' lack the confidence to interpret family history information and there is a low level of recording of family history information in General Practice (GP) records. Primary prevention of CHD through lifestyle advice has sometimes yielded modest results although, for example, behavioural interventions targeted at "at risk" patients have produced encouraging findings. A family history approach, targeted at those requesting CHD assessment, could motivate lifestyle change. The project will assess the clinical value of incorporating systematic family history information into CHD risk assessment in primary care, from the perspective of the users of this service, the health care practitioners providing this service, and the National Health Service.
The study will include three distinct phases: (1) cross-sectional survey to ascertain baseline information on current recording of family information; (2) through an exploratory matched-pair cluster randomised study, with nested qualitative semi-structured interview and focus group study, to assess the impact of systematic family history recording on participants' and primary care professionals' experience; (3) develop an economic model of the costs and benefits of incorporating family history into CHD risk assessment.
On completion of the project, users and primary care practitioners will be more informed of the value and utility of including family history in CHD risk assessment. Further, this approach will also act as a model of how familial risk information can be integrated within mainstream primary care preventive services for common chronic diseases.
Trial Registration
Current Controlled Trials ISRCTN17943542
PMCID: PMC2765435  PMID: 19821989
17.  Effect of social factors on winter hospital admission for respiratory disease: a case–control study of older people in the UK 
Every winter, hospitals in the UK and other developed countries experience a surge in respiratory admissions. Ecological studies suggest that social circumstances may be an important determinant.
To establish the most important factors associated with winter hospital admissions among older people presenting with acute respiratory disease, especially the relative effect of social factors.
Design of study
case–control study.
Seventy-nine general practices in central England.
Of a cohort of patients consulting medical services with lower respiratory tract infection or exacerbation of chronic respiratory disease, 157 hospitalised cases were compared to 639 controls. Social, medical, and other factors were examined by interview and GP records.
Measures of material deprivation were not significant risk factors for admission at either individual or area level, although social isolation (odds ratio [OR] 4.5; 95% confidence interval [CI] = 1.3 to 15.8) resulted in an increased risk of admission. The most important independent risk factor was the presence of chronic obstructive pulmonary disease (COPD; OR 4.0; 95% CI = 1.4 to 11.4), other chronic disease (OR 2.9; 95% CI = 1.2 to 7.0), or both (OR 6.7; 95% CI = 2.4 to 18.4). Being housebound was also an independent risk factor (OR 2.2; 95% CI = 1.0 to 4.8).
Socioeconomic factors had little relative effect compared with medical and functional factors. The most important was the presence of long-term medical conditions (especially COPD), being housebound, and having received two or more courses of oral steroid treatment in the previous year. This combination of factors could be used by primary medical services to identify older patients most vulnerable to winter admissions. Clinicians should ensure that patients with COPD are better supported to manage their condition.
PMCID: PMC2419018  PMID: 18505611
elderly; hospitalisation; chronic obstructive pulmonary disease; respiratory tract infections; socioeconomic factors; winter pressures
18.  Quitting smoking and experience of smoking cessation interventions among UK Bangladeshi and Pakistani adults: the views of community members and health professionals 
To explore attitudes to quitting smoking and experience of smoking cessation among Bangladeshi and Pakistani ethnic minority communities.
Qualitative study using community participatory methods, purposeful sampling, interviews and focus groups, and a grounded approach to data generation and analysis.
Newcastle upon Tyne, UK, 2000–2002.
53 men and 20 women aged 18–80 years, including smokers, former smokers, and smokers' relatives, from the Bangladeshi and Pakistani communities; and eight health professionals working with these communities.
Motivation to quit was high but most attempts had failed. “Willpower” was the most common approach to quitting. For some, the holy month of Ramadan was used as an incentive, however few had been successful in quitting. Perceived barriers to success included being tempted by others, everyday stresses, and withdrawal symptoms. Few participants had sought advice from health services, or received cessation aids, such as nicotine replacement therapy (NRT) or buproprion. Family doctors were not viewed as accessible sources of advice on quitting. Health professionals and community members identified common barriers to accessing effective smoking cessation, including: language, religion and culture; negative attitudes to services; and lack of time and resources for professionals to develop necessary skills.
High levels of motivation do not seem to be matched by effective interventions or successful attempts to quit smoking among Bangladeshi and Pakistani adults in the UK. There is a need to adapt and test effective smoking cessation interventions to make them culturally acceptable to ethnic minority communities. UK tobacco control policies need to give special attention to the needs of ethnic minority groups.
PMCID: PMC2563973  PMID: 16614330
smoking cessation; qualitative research; South Asian; Pakistani; Bangladeshi
19.  Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era 
England is the only country in the world that currently has universal population screening for haemoglobin disorders through linked antenatal and newborn screening. Little is known about the acceptability of such screening.
To explore parents' experiences of, and attitudes towards, new universal genetic screening for haemoglobin disorders.
Design of study
Narrative interview study.
Primary and community care settings across England.
Narrative interviews were undertaken with a maximum variation sample of 39 people who had experienced gene-carrier identification through antenatal and newborn screening for sickle cell, thalassaemia, and other haemoglobin variants within the previous 2 years.
Most parents were unaware screening had occurred or had given it little consideration and so were surprised or shocked by results. However, they were glad to learn of their carrier status, reproductive genetic risk, or their newborn's carrier status. Participants emphasised that antenatal screening should happen as early as possible. Many would rather have known their carrier status before pregnancy or before entering a relationship. Although most were satisfied with the information they received, significant misunderstandings remained. There were culturally diverse attitudes towards prenatal diagnosis and termination. These procedures were acceptable to some parents with strong religious beliefs, including Christians and Muslims.
Parents support screening for haemoglobin disorders but need to be better informed and better prepared for results and what they mean. Sensitivity to patient diversity in attitudes and choices is also required. Universal screening for genetic reproductive risk will increasingly involve generalists, particularly in primary care, presenting opportunities for screening before or earlier in pregnancy, which is likely to be welcomed by patients.
PMCID: PMC2249791  PMID: 18318970
genetic screening; sickle cell; thalassaemia
21.  Informing patients of familial diabetes mellitus risk: How do they respond? A cross-sectional survey 
A strong family history of type 2 diabetes mellitus (DM) confers increased DM risk. This survey analysis determined whether patients who were informed by their doctors of familial DM risk acknowledged that risk and took steps to reduce it.
We conducted an analysis of the National Health Styles 2004 mail survey. All non-diabetic participants who responded to the question of whether their doctor had or had not informed them of their familial DM risk (n = 3,323) were compared for their risk-reducing behaviour and attitude to DM risk.
Forty-one percent (n = 616) of the question responders that had DM family histories were informed by their doctors of their familial risk; the chance of being informed increased with the number of relatives that had the disease. Members of the informed group were more likely than those in the non-informed group to report lifestyle changes to prevent DM (odds ratio [OR] 4.3, 95% confidence interval [CI] 3.5–5.2) and being tested for DM (OR 2.9, 95% CI 2.4–3.6), although no significant improvement occurred in their U.S.-recommended exercise activity (OR 0.9, 95% CI 0.7–1.1). Overall, informed responders recognised both their familial and personal DM risk; most discussed diabetes with their family (69%), though less so with friends (42%); however, 44% of them still did not consider themselves to be at risk.
Responders who were informed by their doctors of being at familial DM risk reported greater incidences of lifestyle changes, DM screening, and awareness of risk than non-informed responders. Doctors were more likely to inform patients with stronger DM family histories. Identifying this higher risk group, either in isolation or in combination with other recognised risk factors, offers doctors the opportunity to target limited health promotion resources efficiently for primary DM prevention.
PMCID: PMC2275238  PMID: 18257922
22.  Imparting carrier status results detected by universal newborn screening for sickle cell and cystic fibrosis in England: a qualitative study of current practice and policy challenges 
Universal newborn screening for early detection of children affected by sickle cell disorders and cystic fibrosis is currently being implemented across England. Parents of infants identified as carriers of these disorders must also be informed of their baby's result. However there is a lack of evidence for most effective practice internationally when doing so. This study describes current or proposed models for imparting this information in practice and explores associated challenges for policy.
Thematic analysis of semi-structured interviews with Child Health Coordinators from all English Health Regions.
Diverse methods for imparting carrier results, both within and between regions, and within and between conditions, were being implemented or planned. Models ranged from result by letter to in-person communication during a home visit. Non-specialists were considered the best placed professionals to give results and a similar approach for both conditions was emphasised. While national guidance has influenced choice of models, other factors contributed such as existing service structures and lack of funding. Challenges included uncertainty about guidance specifying face to face notification; how best to balance allaying parental anxiety by using familiar non-specialist health professionals with concerns about practitioner competence; and extent of information parents should be given. Inadequate consideration of resource and service workload was seen as the main policy obstacle. Clarification of existing guidance; more specific protocols to ensure consistent countrywide practice; integration of the two programmes; and 'normalising' carrier status were suggested as improvements.
Differing models for communicating carrier results raise concerns about equity and clinical governance. However, this variation provides opportunity for evaluation. Timely and more detailed guidance on protocols with clarification of existing recommendations is needed.
PMCID: PMC2235853  PMID: 18078504
23.  Professional Uncertainty and Disempowerment Responding to Ethnic Diversity in Health Care: A Qualitative Study 
PLoS Medicine  2007;4(11):e323.
While ethnic disparities in health and health care are increasing, evidence on how to enhance quality of care and reduce inequalities remains limited. Despite growth in the scope and application of guidelines on “cultural competence,” remarkably little is known about how practising health professionals experience and perceive their work with patients from diverse ethnic communities. Using cancer care as a clinical context, we aimed to explore this with a range of health professionals to inform interventions to enhance quality of care.
Methods and Findings
We conducted a qualitative study involving 18 focus groups with a purposeful sample of 106 health professionals of differing disciplines, in primary and secondary care settings, working with patient populations of varying ethnic diversity in the Midlands of the UK. Data were analysed by constant comparison and we undertook processes for validation of analysis. We found that, as they sought to offer appropriate care, health professionals wrestled with considerable uncertainty and apprehension in responding to the needs of patients of ethnicities different from their own. They emphasised their perceived ignorance about cultural difference and were anxious about being culturally inappropriate, causing affront, or appearing discriminatory or racist. Professionals' ability to think and act flexibly or creatively faltered. Although trying to do their best, professionals' uncertainty was disempowering, creating a disabling hesitancy and inertia in their practice. Most professionals sought and applied a knowledge-based cultural expertise approach to patients, though some identified the risk of engendering stereotypical expectations of patients. Professionals' uncertainty and disempowerment had the potential to perpetuate each other, to the detriment of patient care.
This study suggests potential mechanisms by which health professionals may inadvertently contribute to ethnic disparities in health care. It identifies critical opportunities to empower health professionals to respond more effectively. Interventions should help professionals acknowledge their uncertainty and its potential to create inertia in their practice. A shift away from a cultural expertise model toward a greater focus on each patient as an individual may help.
From a qualitative study, Joe Kai and colleagues have identified opportunities to empower health professionals to respond more effectively to challenges in their work with patients from diverse ethnic communities.
Editors' Summary
Communities are increasingly diverse in terms of ethnicity (belonging to a group of people defined by social characteristics such as cultural tradition or national origin) and race (belonging to a group identified by inherited physical characteristics). Although health professionals and governments are striving to ensure that everybody has the same access to health care, there is increasing evidence of ethnic inequalities in health-care outcomes. Some of these inequalities reflect intrinsic differences between groups of people—Ashkenazi Jews, for example, often carry an altered gene that increases their chance of developing aggressive breast cancer. Often, however, these differences reflect inequalities in the health care received by different ethnic groups. To improve this situation, “cultural competence” has been promoted over recent years. Cultural competence is the development of skills by individuals and organizations that allow them to work effectively with people from different cultures. Health professionals are now taught about ethnic differences in health beliefs and practices, religion, and communication styles to help them provide the best service to all their patients.
Why Was This Study Done?
Numerous guidelines aim to improve cultural competency but little is known about how health professionals experience and perceive their work with patients from diverse ethnic groups. Is their behavior influenced by ethnicity in ways that might contribute to health care disparities? For example, do doctors sometimes avoid medical examinations for fear of causing offence because of cultural differences? If more were known about how health professionals handle ethnic diversity (a term used here to include both ethnicity and race) it might be possible to reduce ethnic inequalities in health care. In this qualitative study, the researchers have explored how health professionals involved in cancer care are affected by working with ethnically diverse patients. A qualitative study is one that collects nonquantitative data such as how doctors “feel” about treating people of different ethnic backgrounds; a quantitative study might compare clinical outcomes in different ethnic groups.
What Did the Researchers Do and Find?
The researchers enrolled 106 doctors, nurses, and other health-related professionals from different health-service settings in the Midlands, an ethnically diverse region of the UK. They organized 18 focus groups in which the health professionals described their experiences of caring for people from ethnic minority backgrounds. The participants were encouraged to recall actual cases and to identify what they saw as problems and strengths in their interactions with these patients. The researchers found that the health professionals wrestled with many challenges when providing health care for patients from diverse ethnic backgrounds. These challenges included problems with language and with general communication (for example, deciding when it was acceptable to touch a patient to show empathy). Health professionals also worried they did not know enough about cultural differences. As a result, they said they often felt uncertain of their ability to avoid causing affront or appearing racist. This uncertainty, the researchers report, disempowered the health professionals, sometimes making them hesitate or fail to do what was best for their patient.
What Do These Findings Mean?
These findings reveal that health professionals often experience considerable uncertainty when caring for ethnically diverse patients, even after training in cultural competency. They also show that this uncertainty can lead to hesitancy and inertia, which might contribute to ethnic health care inequalities. Because the study participants were probably already interested in ethnic diversity and health care, interviews with other health professionals (and investigations of patient experiences) are needed to confirm these findings. Nevertheless, the researchers suggest several interventions that might reduce health care inequalities caused by ethnic diversity. For example, health professionals should be encouraged to recognize their uncertainty and should have access to more information and training about ethnic differences. In addition, there should be a shift in emphasis away from relying on knowledge-based cultural information towards taking an “ethnographic” approach. In other words, health professionals should be helped to feel able to ask their patients about what matters most to them as individuals about their illness and treatment.
Additional Information.
Please access these Web sites via the online version of this summary at
Information on cultural competence and health care is available from the US National Center for Cultural Competence (in English and Spanish) and DiversityRx
PROCEED (Professionals Responding to Cancer in Ethnic Diversity) is a multimedia training tool for educators within the health and allied professions developed from the results of this study; a press release on PROCEED is available from the University of Nottingham
Transcultural Health Care Practice: An educational resource for nurses and health care practitioners is available on the web site of the UK Royal College of Nursing
PMCID: PMC2071935  PMID: 18001148

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