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

Foretelling futures: dilemmas in neonatal neurology: a social science research project, 2002-2004

This end-of-project report has been written for the project funders, The Wellcome Trust, and for individuals who generously helped with the research. The report is also intended to be a background resource for readers who would like to know more details about the „foretelling futures‟ research, the context, aims and methods, and the neonatal units and families involved in the project. Most of the time on writing up the „foretelling futures‟ research has been devoted to writing papers for academic and professional journals, for several reasons: to publicise the research to a wide readership; to try to do justice to the wealth of data that has been gathered; to use the critical peer review process to enable us to write to higher standards; through publication, to join in long-standing international neonatal discussions; to show how social science observations and analyses can be relevant to current controversies, policy and practice. For these reasons, and perhaps unconventionally, the main part of this report, section 4, provides summaries of the journal papers that have been or are being written so far. The aim is to provide a guide to the range of findings that are emerging from the project, and to show how the papers relate together and fit into five themes: families in the NICU; babies‟ rights; sharing information, dilemmas and decisions; time; and knowledge. The brief summaries in this report are not given as alternatives to reading the papers, which explain issues in greater detail and with more examples that readers can interpret for themselves. Instead, the summaries are intended to encourage readers to refer to the journal articles. Section 2 shows that the protocol raised seven exploratory research questions. We received numerous varying, complicated, and sometimes contradictory responses to these questions from the practitioners and parents and the related multidisciplinary literature, and no simple answers. The journal papers go some way towards answering some of the questions. We have much more material from the observations and interviews that could provide further answers, if we had more time for analysis and writing of papers. Because each paper separately and at some length explores answers to one or more of the research questions, we have not tried to summarise the answers into a concluding section. Instead, section 5 gives a four-page summary about the whole project and some key findings

Development of a self-report measure of capability wellbeing for adults: the ICECAP-A

Purpose The benefits of health and social care are not confined to patient health alone and therefore broader measures of wellbeing may be useful for economic evaluation.\ud This paper reports the development of a simple measure of capability wellbeing for adults (ICECAP-A).\ud Methods In-depth, informant-led, interviews to identify the attributes of capability wellbeing were conducted with 36 adults in the UK. Eighteen semi-structured, repeat interviews were carried out to develop a capability-based descriptive system for the measure. Informants were purposively selected to ensure variation in socio-economic status, age, sex, ethnicity and health. Data analysis was carried out inductively and iteratively alongside interviews, and findings were used to shape the questions in later interviews.\ud Results Five over-arching attributes of capability wellbeing were identified for the measure: ‘‘stability’’,‘‘attachment’’, ‘‘achievement’’, ‘‘autonomy’’ and ‘‘enjoyment’’. One item, with four response categories, was developed for each attribute for the ICECAP-A descriptive system.\ud Conclusions The ICECAP-A capability measure represents a departure from traditional health economics outcome measures, by treating health status as an influence over broader attributes of capability wellbeing. Further work is required to value and validate the attributes and test the sensitivity of the ICECAP-A to healthcare interventions

Are premature babies citizens with rights? Provision rights and the edges of citizenship

Premature babies are the same gestational age as the fetus that, in Britain, has no rights. However, our ethnographic neonatal study illustrates how the UN 1989 Convention on the Rights of the Child applies to premature babies. Parents and staff in neonatal units offered socially and culturally constructed versions of childhood relating to versions of citizenship, duties, responsibilities and rights. Far from denying or trivialising rights, attention to premature babies’ rights and citizenship can illuminate how human rights are embodied, aesthetic, interactive, emotional, political, economic and socially contingent. The babies’ resistances also illustrated the relevance of rights to them as sentient, active meaning makers, within the private family and the public neonatal units. We review advantages and disadvantages of conceptualising premature babies’ needs as rights, and their status as citizens

The participation rights of premature babies

This paper reviews the relevance of the UN, 1989 Convention on the Rights of the Child (UNCRC), and particularly the so-called participation rights, to premature babies and their care. The review is illustrated with examples drawn from a study of four neonatal intensive care units, NICU. The paper begins with the background on human and children’s rights, on research about childhood, babies and participation, and on the neonatal research study. Participation rights include rights to: life and survival; a name, identity and nationality; contact with the baby’s family; respect for the child’s cultural background, and inherent human dignity; the child’s right to express views freely in all matters affecting the child, the views to be given due weight according to the age and ability of the child; the opportunity to be heard during proceedings that affect the child; freedom of expression and information, of thought, conscience and religion, of association and peaceful assembly, rest and leisure, play, and to participate freely in cultural life and the arts; disabled children should enjoy a full and decent life and active participation in the community with the fullest possible social inclusion. The paper concludes that respect for babies’ participation rights is feasible, immediate, integral and indispensable to adequate neonatal care, and that babies’ rights justify and validate high standards of neonatal care

Supporting children through family change A review of interventions and services for children of divorcing and separating parents

Includes bibliographical referencesAvailable from British Library Document Supply Centre- DSC:m03/18115 / BLDSC - British Library Document Supply CentreSIGLEGBUnited Kingdo

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.Babies Intensive care ethics Neonatal decision-making Informed consent England