What do parents think about enrolling their premature babies in several research studies?

Morley, Colin J; Lau, Rosalind; Davis, Peter G; Morse, Courtney

doi:10.1136/adc.2004.061986

Cited by 65 publications

(64 citation statements)

References 14 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…A pediatric study supports that 32% of parents of critically ill infants would prefer to have their physician advise them as to whether their baby should participate in a neonatal ICU trial rather than being asked to decide themselves. 11 In a study 12 of adults, researchers reported that 35% of family members of critically ill patients experience symptoms of posttraumatic stress associated with requests to provide consent for research participation. Compared with involvement of any physician, respondents preferred their attending physician to be involved in decisions regarding their participation in research.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of the General Public Toward Alternative Consent Models

Burns

Magyarody²,

Duffett³

et al. 2010

American Journal of Critical Care

View full text Add to dashboard Cite

Objective To assess the general public's attitudes toward various consent models and data management strategies for critically ill adults eligible to participate in a low-risk randomized trial. Methods A self-administered survey was conducted at public locations in Toronto to elucidate the general public's attitudes toward various consent models for participation in a low-risk randomized trial when a substitute decision maker was available, unavailable, or did not exist, as well as to assess attitudes toward strategies for data management in patients enrolled under a substitute decision maker's consent who later decline further participation. Results We surveyed 221 citizens. Most respondents (64%-74%) wanted to be considered for participation. When a substitute decision maker was available, similar proportions of respondents were comfortable with the substitute decision maker providing consent, deferred consent, and their substitute decision maker being asked if the respondent would "object to participating. " If a substitute existed but was unavailable, most participants were comfortable with waived consent. If a substitute did not exist, respondents expressed comfort with 4 consent models: an attending physician model, a 2-physician model (1 involved in care), deferred consent, and waived consent. Compared with any physician, respondents preferred their attending physician to be involved in decisions about their research participation, especially in the absence of a substitute decision maker. Nearly three-fourths of respondents supported data management strategies that enabled use of their primary outcome; moreover, 58% believed that data collected before their decision to decline further participation should be included. Conclusions Most respondents were interested in participating in a low-risk trial. Respondents endorsed a variety of approaches to obtaining consent in the presence or absence of substitute decision makers and many would be comfortable if their data were used despite a decision to decline further participation.

show abstract

Section: Discussionmentioning

confidence: 99%

Attitudes of the General Public Toward Alternative Consent Models

Burns

Magyarody²,

Duffett³

et al. 2010

American Journal of Critical Care

View full text Add to dashboard Cite

show abstract

“…[42][43][44] Consent can often be sought soon after diagnosis, at birth or when the child is very ill and the parents are distressed and vulnerable. 30,45,46 Despite such challenges, parents have reported that they, rather than doctors or nurses, should be the ones who make the decision about whether a child should enter a trial, 15,32,43,47,48 although parents value doctors' advice. 49 Making a decision for one's child is further complicated by the need to make the 'right decision' and the anticipation that one might later regret a decision.…”

Section: The Context and Experience Of Trial Recruitmentmentioning

confidence: 99%

Processes in recruitment to randomised controlled trials of medicines for children (RECRUIT): a qualitative study

Shilling

Williamson²,

Hickey³

et al. 2011

Health Technol Assess

View full text Add to dashboard Cite

How to obtain copies of this and other HTA programme reports An electronic version of this title, in Adobe Acrobat format, is available for downloading free of charge for personal use from the HTA website (www.hta.ac.uk). A fully searchable DVD is also available (see below).Printed copies of HTA journal series issues cost £20 each (post and packing free in the UK) to both public and private sector purchasers from our despatch agents.Non-UK purchasers will have to pay a small fee for post and packing. For European countries the cost is £2 per issue and for the rest of the world £3 per issue. How to order:-fax (with credit card details) -post (with credit card details or cheque) -phone during office hours (credit card only).Additionally the HTA website allows you to either print out your order or download a blank order form. Contact details are as follows:Synergie UK (HTA Department) Digital House, The Loddon Centre Wade Road Basingstoke Hants RG24 8QW Email: orders@hta.ac.uk Tel: 0845 812 4000 -ask for 'HTA Payment Services' (out-of-hours answer-phone service) Fax: 0845 812 4001 -put 'HTA Order' on the fax header Payment methods Paying by chequeIf you pay by cheque, the cheque must be in pounds sterling, made payable to University of Southampton and drawn on a bank with a UK address.Paying by credit card You can order using your credit card by phone, fax or post. SubscriptionsNHS libraries can subscribe free of charge. Public libraries can subscribe at a reduced cost of £100 for each volume (normally comprising 40-50 titles). The commercial subscription rate is £400 per volume (addresses within the UK) and £600 per volume (addresses outside the UK). Please see our website for details. Subscriptions can be purchased only for the current or forthcoming volume.How do I get a copy of HTA on DVD?Please use the form on the HTA website (www.hta.ac.uk/htacd/index.shtml). HTA on DVD is currently free of charge worldwide.The website also provides information about the HTA programme and lists the membership of the various committees. HTAProcesses in recruitment to randomised controlled trials of medicines for children (RECRUIT): a qualitative study NIHR Health Technology Assessment programmeThe Health Technology Assessment (HTA) programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care. The research findings from the HTA programme directly influence decision-making bodies such as the National Institute for Health and Clinical Excellence (NICE) and the National Screening Committee (NSC). HTA findings also help to improve the quality of clinical practice in the NHS indirectly in that they form a key component of the 'National Knowledge Service' . The HTA programme is n...

show abstract

“…However, Morley et al 15 showed 74% of parents would be happy to join two or more studies. In a model proposed for obtaining informed consent, Golec et al 17 suggest that, if a parent is to be approached for more than one study, these requests should be made at least 48 hours apart.…”

Section: Ethical and Legal Issuesmentioning

confidence: 99%