Composition and capacity of Institutional Review Boards, and challenges experienced by members in ethics review processes in Addis Ababa, Ethiopia: An exploratory qualitative study.

Few studies in sub-Saharan Africa evaluate Institutional Review Boards (IRBs) capacity. The study aims to explore the composition of IRBs, training, and challenges experienced in the ethics review processes by members of research institutions and universities in Addis Ababa, Ethiopia. Our findings indicate that most IRBs members were trained on research ethics and good clinical practice. However, majority perceived the trainings as basic. IRB members faced several challenges including: investigators wanting rapid review; time pressure; investigators not following checklists; limited expertise in reviewing clinical trials, studies on genetics, and traditional medicine; lack of IRB offices for administrative work; competing tasks; limited staffing and the lack of a standardized review system. There is need for advanced training on research ethics to meet the evolving research needs. In addition, investments in IRBs are needed in terms of funding, and physical and human resources in Addis Ababa and Ethiopia in general.

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.

BACKGROUND: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. METHODS: We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015). We explore two aspects of consent: first, how healthcare professionals consider the act of 'consenting' patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. RESULTS: Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients' understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients' decision-making. Rather, decision-making is socially contextualised - also based on factors outside of information provision. CONCLUSIONS: A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed.

What constitutes 'balanced' information in the practitioners' portrayals of Down's syndrome?

OBJECTIVE: to explore the information that practitioners perceive they give to pregnant women about the condition of Down's syndrome, and to look at some influences on the construction of this information. DESIGN: qualitative study incorporating semi-structured interviews with practitioners followed by multidisciplinary discussion groups led by a health-care ethicist. SETTING: inner-city teaching hospital and district general hospital situated in South East England. PARTICIPANTS: seventy practitioners whose work relates directly or indirectly to perinatal care. FINDINGS: although women were seen to vary in their knowledge about Down's syndrome, practitioners felt that many did not understand the basic features of the condition. Practitioners themselves rarely had any practical experience or knowledge of people with Down's syndrome. This led to a reliance on 'medical textbook' information, which tends to focus primarily on the potential problems of the condition. Due to lack of time, practitioners also relied on the use of information leaflets. However, much more space in these was devoted to explaining the actual screening process rather than the condition, and the very brief descriptions of Down's syndrome lacked any positive statements. IMPLICATIONS FOR PRACTICE: informed choice in antenatal screening must be based on balanced information about 'screened for' conditions. Education about conditions set within a broader context of disability awareness could help to avoid the 'checklist' type approach used by many respondents. Practitioners and maternity units as a whole should reflect critically on the origins of the information they are conveying to prospective parents about what it means to live with Down's syndrome. Midwives and others involved in prenatal screening need to be aware of their own feelings about screening and disability. Midwives should also be involved in the planning of any future antenatal screening developments within their workplaces, and it is essential that they prospectively highlight factors such as lack of time and knowledge, which they feel inhibits their ability to facilitate informed choice. Research is needed which explores the consequences of allocating substantial resources into ensuring that women are fully informed about an increasingly complex antenatal screening process.