Literature DB >> 15846012

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

C J Morley1, R Lau, P G Davis, C Morse.   

Abstract

OBJECTIVE: To investigate parents' opinions about enrolling their premature baby into several research studies in the few days after birth.
METHODOLOGY: A questionnaire was given to parents of premature babies in the neonatal intensive care unit who had been invited to join several studies (two to seven).
RESULTS: All 50 mothers and 42 of 48 fathers completed the questionnaire independently; 28% had been asked to join two studies, 32% three, 24% four, 14% five, and 2% six studies. There were 61 babies with mean (SD) gestational age 26.9 (1.6) weeks and birth weight 877 (249) g. Nearly three quarters (71%) of the parents thought it was very good for their baby to be in a hospital that was carrying out a lot of research. Most (93%) thought that their baby would get the same or better care in a study. Only 15% thought their baby was too small for research studies. Almost all (98%) wanted to be involved in the decision about their baby joining a study. Only 22% were worried about the number of studies; 10% would not enroll their baby in any studies, but 74% were willing for their baby to join two or more studies, and 10% would enroll in all the studies. Most (94%) believed that their baby's participation would improve care of future babies.
CONCLUSIONS: Most of these parents were willing to join several studies. The majority were not worried about their baby participating in the studies. The profession needs to be aware that parents are supportive of neonatal research and participation in multiple studies.

Keywords:  Biomedical and Behavioral Research; Empirical Approach

Mesh:

Year:  2005        PMID: 15846012      PMCID: PMC1721889          DOI: 10.1136/adc.2004.061986

Source DB:  PubMed          Journal:  Arch Dis Child Fetal Neonatal Ed        ISSN: 1359-2998            Impact factor:   5.747


  12 in total

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Journal:  Lancet       Date:  2000-12-16       Impact factor: 79.321

3.  Views of neonatologists and parents on consent for clinical trials.

Authors:  J E Tyson; P L Knudson
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4.  Neonatal research: the parental perspective.

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Journal:  Arch Dis Child Fetal Neonatal Ed       Date:  2004-07       Impact factor: 5.747

5.  The "inclusion benefit" in clinical trials.

Authors:  J D Lantos
Journal:  J Pediatr       Date:  1999-02       Impact factor: 4.406

6.  Do sick newborn infants benefit from participation in a randomized clinical trial?

Authors:  B Schmidt; P Gillie; C Caco; J Roberts; R Roberts
Journal:  J Pediatr       Date:  1999-02       Impact factor: 4.406

7.  Is informed consent in neonatal randomised controlled trials ritual?

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8.  Randomised controlled trials in perinatal medicine: 2. Recruitment of a pregnant woman or her newborn child into more than one trial.

Authors:  P Brocklehurst
Journal:  Br J Obstet Gynaecol       Date:  1997-07

9.  Determinants of parental authorization for involvement of newborn infants in clinical trials.

Authors:  J A Zupancic; P Gillie; D L Streiner; J L Watts; B Schmidt
Journal:  Pediatrics       Date:  1997-01       Impact factor: 7.124

10.  Correlates of anxiety, hostility, depression, and psychosocial adjustment in parents of NICU infants.

Authors:  L V Doering; D K Moser; K Dracup
Journal:  Neonatal Netw       Date:  2000-08
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  17 in total

1.  Neonatal research: parent's perception of informed consent.

Authors:  Suksham Jain; Deepak Chawla; Anuradha Bansal
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Review 2.  Participation in multiple neonatal research studies.

Authors:  M Ward Platt
Journal:  Arch Dis Child Fetal Neonatal Ed       Date:  2005-05       Impact factor: 5.747

3.  Mothers of babies enrolled in a randomized trial immediately after birth report a positive experience.

Authors:  D L Harris; P J Weston; J E Harding
Journal:  J Perinatol       Date:  2014-01-30       Impact factor: 2.521

4.  Educating Parents About Pediatric Research: Children and Clinical Studies Website Qualitative Evaluation.

Authors:  Lisa D Marceau; Lisa C Welch; Victoria L Pemberton; Gail D Pearson
Journal:  Qual Health Res       Date:  2015-12-28

5.  Challenges and successes of recruitment in the "angiotensin-converting enzyme inhibition in infants with single ventricle trial" of the Pediatric Heart Network.

Authors:  Nancy A Pike; Victoria Pemberton; Kerstin Allen; Jeffrey P Jacobs; Daphne T Hsu; Alan B Lewis; Nancy Ghanayem; Linda Lambert; Kari Crawford; Teresa Atz; Rosalind Korsin; Mingfen Xu; Chitra Ravishankar; James Cnota; Gail D Pearson
Journal:  Cardiol Young       Date:  2012-07-05       Impact factor: 1.093

6.  Antenatal consent in the SUPPORT trial: challenges, costs, and representative enrollment.

Authors:  Wade D Rich; Kathy J Auten; Marie G Gantz; Ellen C Hale; Angelita M Hensman; Nancy S Newman; Neil N Finer
Journal:  Pediatrics       Date:  2010-06-29       Impact factor: 7.124

Review 7.  Consent for neonatal research.

Authors:  L McKechnie; A B Gill
Journal:  Arch Dis Child Fetal Neonatal Ed       Date:  2006-09       Impact factor: 5.747

8.  Two speeds of increasing milk feeds for very preterm or very low-birthweight infants: the SIFT RCT.

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Review 9.  Making co-enrolment feasible for randomised controlled trials in paediatric intensive care.

Authors:  Katie Harron; Twin Lee; Tracy Ball; Quen Mok; Carrol Gamble; Duncan Macrae; Ruth Gilbert
Journal:  PLoS One       Date:  2012-08-03       Impact factor: 3.240

Review 10.  A thematic analysis of factors influencing recruitment to maternal and perinatal trials.

Authors:  Rebecca L Tooher; Philippa F Middleton; Caroline A Crowther
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