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Biomedical subjects

Priscilla Alderson

Publications and source records attributed to Priscilla Alderson.

At least 19 recordsLinked to original sources
PubMed2005

Parents' experiences of sharing neonatal information and decisions: consent, cost and risk.

This paper is about the care of babies with confirmed or potential neurological problems in neonatal intensive care units. Drawing on recent ethnographic research, the paper considers parents' experiences of sharing information and decisions with neonatal staff, and approaches that support or restrict parents' involvement. There are growing medico-legal pressures on practitioners to inform parents and involve them in their babies' care. Data are drawn from observations in four neonatal units in southern England, and interviews with the parents of 80 babies and with 40 senior staff. The paper compares standards set by recent guidance, with parents' views about their share in decision-making, their first meetings with their babies, 'minor' decision-making, the different neonatal units, being a helpless observer and missed opportunities. Parents' standards for informed decisions are summarised, with their reported views about two-way decision-making, and their practical need to know. Whereas doctors emphasise distancing aspects of the consent process, parents tend to value 'drawing together' aspects.

Anthropology, Cultural↗
PubMed2002

Dilemmas encountered by health practitioners offering nuchal translucency screening: a qualitative case study.

OBJECTIVE: To explore dilemmas experienced by practitioners involved in routine prenatal nuchal translucency (NT) screening. DESIGN: Qualitative study incorporating multidisciplinary practitioner discussion groups led by a health care ethicist. SETTING: Inner-city teaching hospital with fetal medicine unit. PARTICIPANTS: Thirty-two practitioners whose work relates directly or indirectly to perinatal care. RESULTS: Practitioners identified a number of dilemmas, many of which centred on the tension between pregnancy being seen as a normal or a 'risky' time. Practitioners and women were perceived to have contrasting reasons for screening, with women welcoming the opportunity to 'see' their baby on the ultrasound scan, whilst practitioners were screening for abnormalities. These differing agendas led to various dilemmas particularly in relation to information giving, performing scans incorporating NT screening and promoting individual client choice. CONCLUSIONS: Plans to introduce routine NT screening need careful prospective consideration of the potential implications for both providers and users of the service. The discussion groups also identified the need for training in the complex communication skills required and an awareness of the related ethical dilemmas, plus the need for increased time and resources to enable practitioners to promote informed choice.

Access to Information↗
PubMed2002

Is nondirectiveness possible within the context of antenatal screening and testing?

Partly in order to dissociate itself from eugenics, genetic counselling values the principle of nondirectiveness as a key feature. Recent reports have upheld the importance of this approach, treating it unproblematically. However, doubts have been expressed about whether nondirective counselling is possible or indeed, desirable. Changes in organisational aspects of antenatal screening delivery in the UK have meant that genetic counselling is now being carried out by a variety of practitioners other than counsellors and specialists. These are often practitioners such as obstetricians and midwives who, in many other aspects of their work do not practise in a nondirective way. This paper explores some of the difficulties health practitioners encountered when attempting to work nondirectively. Reasons given by practitioners for not following this approach fell into categories, which in turn formed a continuum. Categories along the continuum ranged from acting directively at the request of women, through to deciding for women, either covertly or overtly, in their "best interests". It appears that for practitioners, the boundary between choice and coercion is not a clearcut one, and visualising it instead as a continuum may make it easier to see how slippage between choice and coercion can occur. The paper highlights the dilemmas which a variety of practitioners are dealing with in their daily work, in the hope of encouraging debate about these complex clinical and ethical issues.

Attitude of Health Personnel↗
PubMed2002

Too many choices? Hospital and community staff reflect on the future of prenatal screening.

Promoting informed choice is commonly recognised as the chief purpose and benefit of prenatal screening, its very presence being viewed as a key way in which the process can be distanced from eugenics. As the number of conditions and features which can potentially be screened for rises, dilemmas about how to achieve informed choice can only increase. Seventy hospital and community staff working in or attached to two English hospitals were interviewed individually on topics which included their views on genetic developments and moral beliefs and values, and how these affected their daily work. The majority then took part in small discussion groups led by an ethicist. The research identified a paradox. On the one hand, participants recognised the centrality of informed choice to prenatal screening, although they had many doubts about whether it could be achieved. On the other hand, most saw the expansion of screening, which might further compromise informed choice, as an inevitable and inexorable process over which they had little, if any, control. This was despite the fact that many of them decided, managed or implemented prenatal screening policies within their hospitals. The paper explores the factors which staff themselves identified as responsible for this perceived inevitable expansion. It then discusses more generally how the expansion of medical technologies can appear as inexorable to those involved. Finally, the paper calls for more inclusive, integrated and collaborative debate and research around the whole area of prenatal screening. This is to ensure that as far as possible, the wider consequences and implications of any proposed expansion to prenatal screening-both the promises and the potential side-effects-are debated ahead of their implementation, and also to help ensure that public policy represents and serves contemporary society.

Attitude of Health Personnel↗
PubMed2002

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.

Adult↗
PubMed2002

Examining ethics in practice: health service professionals' evaluations of in-hospital ethics seminars.

This article reviews practitioners' evaluations of in-hospital ethics seminars. A qualitative study included 11 innovative in-hospital ethics seminars, preceded and followed by interviews with most participants. The settings were obstetric, neonatal and haematology units in a teaching hospital and a district general hospital in England. Fifty-six health service staff in obstetric, neonatal, haematology, and related community and management services participated; 12 attended two seminars, giving a total of 68 attendances and 59 follow-up evaluation interviews. The 11 seminars facilitated by an ethicist addressed the key local concerns of staff about the social and ethical consequences of advances in genetics and their impact on professional policies and practice. Seminar agendas were drawn from prior interviews with 70 staff members. During evaluation interviews, participants commented on general aspects that they had enjoyed, how the sessions could be improved, timing, the mix of participants, the quality of the facilitation, whether sessions should be more challenging, after-effects of sessions, and interest in attending seminars and contacting the ethicist in future. Participants valued the increased interprofessional understanding and coherent discussion of many pressing issues that addressed important though seldom discussed ethical questions. The seminars worked well in the different hospitals and specialties.

Bioethical Issues↗
PubMed2002

The new genetics: promise or threat to children?

What will treating children as consumer artefacts, to be changed genetically at parental or medical whim, do to our understanding of human existence, of human identity, or of intergenerational obligations? These issues are explored in a paper based on a lecture given recently at a New Zealand conference.

Child↗