A qualitative study to identify parents' perceptions of and barriers to asthma management in children from South Asian and White British families.

BACKGROUND: Over one million children receive treatment for asthma in the UK. South Asian children experience excess morbidity and higher rates of hospitalization than the White population. This study aimed to explore perceptions and experiences of asthma and asthma management in British South Asian and White British families, to identify barriers to optimal management and to inform culturally appropriate interventions to improve management. METHODS: A qualitative methodology, using semi-structured interviews was adopted. Members of 30 families from six major South Asian ethnic-religious groups were purposively sampled (n = 49). For comparison, 17 White British parents were interviewed. Topics included understandings of asthma; day-to-day management; interactions with health care providers and the perceived quality of healthcare services. Data were analyzed using interpretive thematic analysis, facilitated by NVivo. Similarities and differences between South Asian and White families were analysed across key themes. RESULTS: Many of the problems facing families of a child with asthma were common to South Asian and White British families. Both had limited understanding of asthma causes and triggers and expressed confusion about the use of medications. Both groups reported delays in receiving a clear diagnosis and many experienced what was perceived as uncoordinated care and inconsistent advice from health professionals. No family had received an asthma plan. South Asian families had more difficulty in recognising severity of symptoms and those with limited English faced additional barriers to receiving adequate information and advice about management due to poor communication support systems. South Asian parents reported higher levels of involvement of wider family and higher levels of stigma. Attendance at the emergency department was related to previous experience, difficulties in accessing primary care, lack of knowledge of alternatives and difficulties in assessing severity. CONCLUSIONS: Barriers to optimal asthma management exist at the individual family, community and healthcare systems levels. Culturally sensitive, holistic and collaboratively designed interventions are needed. Improved communication support for families with lower proficiency in English is required. Healthcare professionals need to ensure that families receive an asthma plan and make greater efforts to check families' understandings of asthma triggers, use of medications, assessment of asthma severity and accessing help.

The 'weekend effect' in acute medicine: a protocol for a team-based ethnography of weekend care for medical patients in acute hospital settings.

INTRODUCTION: It is now well-recognised that patients admitted to hospital on weekends are at higher risk of death than those admitted during weekdays. However, the causes of this 'weekend effect' are poorly understood. Some contend that there is a deficit of medical staff on weekends resulting in poorer quality care, whereas others find that patients admitted to hospital on weekends are sicker and therefore at higher risk of adverse outcomes. Clarifying the causal pathway is clearly important in order to identify effective solutions. In this article we describe an ethnographic approach to evaluating the organisation and delivery of medical care on weekends compared with weekdays, with a specific focus on the role of medical staff as part of National Health Service England's plan to implement 7-day services. METHODS AND ANALYSIS: We will conduct an ethnographic study of 20 acute hospitals in England between April 2016 and March 2018 as part of the High-intensity Specialist-Led Acute Care project (www.hislac.org). Data will be collected through observations and shadowing, and interviews with staff, in 10 hospitals with higher intensity specialist (consultant) staffing on weekends and 10 with lower intensity specialist staffing. Interviews will be conducted with up to 20 patients sampled from two high-intensity and two low-intensity sites. We will coordinate, compare and contrast observations across our team of ethnographers. Analysis will be both in-depth and cross-cutting, exploring specific features within individual sites and making comparisons between them. We outline how data collection and analysis will be facilitated and organised. ETHICS AND DISSEMINATION: The project has received ethics approval from the South West Wales Research Ethics Committee: Reference 13/WA/0372. Informed consent will be obtained for all interview participants. The findings will be disseminated through peer-reviewed publications in high-quality journals and at national and international conferences.

Asthma management in British South Asian children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care.

BACKGROUND: In the UK, people of South Asian origin with asthma experience excess morbidity, with hospitalisation rates three times those of the majority White population and evidence suggests that South Asian children with asthma are more likely to suffer uncontrolled symptoms and hospital admissions with acute asthma compared to White British children. This paper draws on data from The Management and Interventions for Asthma (MIA) study to identify the operation of barriers to optimal care and good asthma control for South Asian children. METHODS: The MIA study followed a multi-phase, iterative, participatory design, underpinned by the socio-ecological model. Findings presented here are from face-to face, semi-structured interviews with South Asian (Indian, Pakistani and Bangladeshi origin) parents and carers of a child with asthma (n = 49). Interviews were conducted in English or relevant South Asian languages using specially trained community facilitators. Data were transcribed verbatim and analysed according to the principles of interpretive thematic analysis, facilitated by the use of NVivo. RESULTS: Seven dimensions of candidacy are identified: identification of candidacy; navigation; the permeability of asthma services; appearances at health services; adjudications; offers and resistance and operating conditions in the local production of candidacy. The analysis demonstrates several ways in which a potential lack of alignment between the priorities and competencies of British South Asian families and the organization of health services combine to create vulnerabilities and difficulties in effectively managing childhood asthma. CONCLUSIONS: Healthcare systems have a responsibility to develop services that are sensitive and appropriate to the needs of their communities. In South Asian communities, further efforts are required to raise awareness of symptoms and effectively communicate how, when and where to seek help for children. There is a need for improved diagnosis and consistent, effectively communicated information, especially regarding medication. Parents made several suggestions for improving services: presentations about asthma at easily accessible community venues; an advice centre or telephone helpline to answer queries; opportunities for sharing experiences with other families; having information provided in South Asian languages; longer GP appointments; extended use of asthma nurses; and better education for healthcare professionals to ensure consistency of care and advice.

Doing accountability: a discourse analysis of research ethics committee letters.

Research ethics committees (RECs) are charged with adjudicating the ethical status of research projects, and determining the conditions necessary for such projects to proceed. Both because of their position in the research process and because of the controversial nature of ethical judgements, RECs' views and decisions need to be accountable. In this paper we use techniques of discourse analysis to show how REC decision letters 'do' accountability. Using a sample of 260 letters from three datasets, we identify a range of discursive devices used in letters written by RECs. These include drawing attention to: the process behind the decision, including its collaborative nature; holding the applicants accountable, by implying that any decision made by the REC can be attributed to the performance of the applicants; referring to specialist expertise; and calling upon external authorities. These tactics 'do' accountability by showing that routines of ethical assessment have been enacted, by establishing the factuality of claims, and by managing questions of fault and blame attribution. They may, however, also risk undermining legitimacy by failing to acknowledge the inherent contestability of ethical decision making or the limited nature of the cultural authority accorded to RECs, and thus may appear as an illegitimate exercise of power.

Written work: the social functions of Research Ethics Committee letters.

Research Ethics Committees (RECs) are increasingly institutionalised as a feature of research practice, but have remained strangely neglected by social scientists. In this paper, we argue that analysis of letters from RECs to researchers offers important insights into how RECs operate. We report a traditional content analysis and an ethnographic content analysis of 141 letters to researchers, together with an analysis of the organisational and institutional arrangements for RECs in the UK. We show that REC letters perform three important social functions. First, they define what is deemed by a REC to be ethical practice for any particular application, and confer authority on that definition. They do this actively, through comments on particular aspects of proposals, and passively, through silences about other aspects. Second, they provide an account of the work of the REC, and function as a form of institutional display. Third, they specify the nature of the relationship between the REC and the applicant, casting the applicant in a supplicant role and requiring forms of docility. Writing and reading REC letters require highly specific competences, and engage both parties in a Bourdieusian "game" that discourages challenges from researchers. The authority of RECs' decisions derives not from their appeal to the moral superiority of any ethical position, but through their place in the organisational structure and the social positioning of the parties to the process thus implied. Letters are the critical point at which RECs act on researchers and their projects.

Public health professionals' perceptions toward provision of health protection in England: a survey of expectations of Primary Care Trusts and Health Protection Units in the delivery of health protection.

BACKGROUND: Effective health protection requires systematised responses with clear accountabilities. In England, Primary Care Trusts and the Health Protection Agency both have statutory responsibilities for health protection. A Memorandum of Understanding identifies responsibilities of both parties, but there is a potential lack of clarity about responsibility for specific health protection functions. We aimed to investigate professionals' perceptions of responsibility for different health protection functions, to inform future guidance for, and organisation of, health protection in England. METHODS: We sent a postal questionnaire to all health protection professionals in England from the following groups: (a) Directors of Public Health in Primary Care Trusts; (b) Directors of Health Protection Units within the Health Protection Agency; (c) Directors of Public Health in Strategic Health Authorities and; (d) Regional Directors of the Health Protection Agency RESULTS: The response rate exceeded 70%. Variations in perceptions of who should be, and who is, delivering health protection functions were observed within, and between, the professional groups (a)-(d). Concordance in views of which organisation should, and which does deliver was high (> or =90%) for 6 of 18 health protection functions, but much lower (< or =80%) for 6 other functions, including managing the implications of a case of meningitis out of hours, of landfill environmental contamination, vaccination in response to mumps outbreaks, nursing home infection control, monitoring sexually transmitted infections and immunisation training for primary care staff. The proportion of respondents reporting that they felt confident most or all of the time in the safe delivery of a health protection function was strongly correlated with the concordance (r = 0.65, P = 0.0038). CONCLUSION: Whilst we studied professionals' perceptions, rather than actual responses to incidents, our study suggests that there are important areas of health protection where consistent understanding of responsibility for delivery is lacking. There are opportunities to clarify the responsibility for health protection in England, perhaps learning from the approaches used for those health protection functions where we found consistent perceptions of accountability.

Limits of uncertainty in measured values of embolus-to-blood ratio due to Doppler sample volume shape and location.

Measurements of the relative Doppler power scattered by an embolus and the surrounding blood are widely used to infer the composition of the embolus. For a given embolus, measured embolus-to-blood ratio (MEBR) is affected by the Doppler sample volume shape, the geometrical relationship between the sample volume and the vessel, and the embolus trajectory through the blood vessel. The likely magnitudes of such effects were quantified using a model that allowed calculation of theoretical values of MEBR as a function of the geometrical relationship between a blood vessel and a defined sample volume. Overall, the effects of embolus trajectory, likely insonation angles, and plausible vessel misalignments introduced uncertainties in MEBR values of approximately 10 to 12 dB for a given vessel size. In practice, the only operator-controlled factors are the position and orientation of the transcranial Doppler probe on the patients' heads. Probe positioning can significantly affect MEBR and suboptimal positioning may result in the reduced detection of emboli.