Motivations of Mothers to Enroll Their Newborn Infants in General Clinical Research on Well-Infant Care and Development

Maayan-Metzger, Ayala; Kedem-Friedrich, Peri; Kuint, Jacob

doi:10.1542/peds.2007-1571

Cited by 24 publications

(44 citation statements)

References 14 publications

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“…Similar to our findings, previous studies found that most important motives for parents to consent for research on their children were: clear benefit to their child; detailed explanation on the research consent form; and the research adding to medical knowledge [11,12,18,19]. In a survey of parents of children with leukaemia, the most frequently suggested factors to improve informed consent were: giving parents more time to make their decision; the amount and type of information provided; organization of the consent conference; communication style; and providing additional information materials [20].…”

Section: Discussionsupporting

confidence: 91%

Factors influencing parental consent for participation in clinical research involving their children in Egypt

Nasef¹,

Shabaan²,

Mohammed³

et al. 2014

East Mediterr Health J

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Factors affecting parents' decision to involve their children in clinical research have not been studied in all cultural backgrounds. We aimed to explore the attitudes and beliefs influencing parents' decision to involve their children in clinical research in Mansoura, Egypt. Of 523 families approached, 357 filled the questionnaire. Only 98 (27.5%) parents consented to involve their child in clinical research. The children of consenters were significantly older than refusers: 8.6 (SD 7.2) versus 2.6 (SD 1.2) years. Factors favouring consent were: research of benefit to child (84.7%), enough explanation about the benefits (40.8%) and to learn more about child's condition (29.6%). Factors favouring refusal were: use of new drugs or vaccines (89.6%) and invasive procedures (84.2%). Parents' rate of consent was positively correlated with the research being non-invasive and the belief that research was of benefit to their child and negatively correlated with belief that refusal may negatively affect the care provided to their child. 1Department of Paediatrics, Mansoura University Children Hospital, Mansoura, Dakahlia, Egypt (Correspondence to N. Nasef: nehad_nasef@ mans.edu.eg RÉSUMÉ Les facteurs influant sur la décision des parents de laisser leur enfant participer à une étude de recherche clinique n'ont pas été étudiés dans tous les contextes culturels. L'objectif de l'étude était d'examiner les attitudes et les croyances influant sur la décision des parents de laisser participer leur enfant à une étude de recherche à Mansoura (Égypte). Sur 523 familles contactées, 357 ont rempli le questionnaire. Seuls 98 parents (27,5 %) consentaient à laisser participer leur enfant à une recherche clinique. Les enfants des parents qui avaient donné leur consentement étaient nettement plus âgés que ceux dont les parents avaient refusé : 8,6 ans (ET 7,2) contre 2,6 ans (ET 1,2). Les facteurs favorisant le consentement étaient les suivants : une recherche bénéfique pour l'enfant (84,7 %), des explications suffisantes sur les avantages (40,8 %) et l'occasion de mieux connaître l'affection de leur enfant (29,6%). Les facteurs favorisant le refus étaient les suivants : l'utilisation de nouveaux médicaments ou vaccins (89,6 %) et des actes invasifs (84,2 %). Le taux de consentement des parents était positivement corrélé à une recherche non invasive et à la croyance que la recherche serait bénéfique pour leur enfant, et négativement corrélé à la croyance selon laquelle un refus pourrait négativement influer sur les soins fournis à leur enfant. ‫املتوسط‬ ‫لرشق‬ ‫الصحية‬ ‫املجلة‬ ‫العرشون‬ ‫املجلد‬ ‫الثالث‬ ‫العدد‬163

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Section: Discussionsupporting

confidence: 91%

Factors influencing parental consent for participation in clinical research involving their children in Egypt

Nasef¹,

Shabaan²,

Mohammed³

et al. 2014

East Mediterr Health J

View full text Add to dashboard Cite

show abstract

“…The finding was evident and in line with previous studies [9,10]. Promotion of the common good and public health was the second most important reason to participate.…”

Section: Discussionsupporting

confidence: 90%

“…The possible risks of trials have commonly been reported to be the dominating cause for declining consent [5,6,9,12,14]. For the present questionnaire, the safety concerns may have been even further inflated due to the special media attention on the association between pandemic flu vaccine and narcolepsy [15] at the time of the questionnaire study.…”

Section: Discussionmentioning

confidence: 93%

See 1 more Smart Citation

Health benefit for the child and promotion of the common good were the two most important reasons for participation in the FinIP vaccine trial

Nieminen

Syrjänen

Puumalainen

et al. 2015

Vaccine

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“…Therefore, it is unlikely that developmental or behavioural problems were under-or overestimated in our study. Since the The rate ratio (RR) estimates of birth in level III hospital are adjusted for intrauterine growth, multiple births, sex, gestational age, birthweight, non-lethal malformations, the mother's and the father's years of education and employment status, and family structure p values are given with adjustments for intrauterine growth, multiple births, sex, gestational age, birthweight, non-lethal malformations, the mother's and the father's years of education and employment status, and family structure The rate ratio (RR) estimates for birth outside office hours are adjusted for intrauterine growth, multiple births, sex, gestational age, birthweight, non-lethal malformations, the mother's and the father's years of education and employment status, and family structure mothers of full-term infants have been less willing to participate in trials than mothers of preterm infants [27], we had, as expected, a lower response rate for the controls than for the VLBWI. The parents of VLBWI are more likely to regard this type of study as important than the parents of the controls.…”

Section: Discussionmentioning

confidence: 99%

Development and behaviour of 5-year-old very low birthweight infants

Rautava

Andersson

Gissler

et al. 2010

Eur Child Adolesc Psychiatry

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The place and time of birth influence the mortality of premature infants. We studied the effect of prematurity, time of birth, birth hospital level and district on the development and behaviour in a national cohort of 5-year-old Finnish very low birthweight infants (VLBWI). All surviving VLBWI (gestational age \32 weeks or birthweight B1,500 g) born in 2001-2002 in level II or III hospitals in Finland and full-term controls were included. The parents of 588 (64%) VLBWI and 176 (46%) controls returned the Five to Fifteen questionnaire (FTF) on the development and behaviour of their 5-year-old children. The questionnaire scores were linked to data from the National Medical Birth Register, the Hospital Discharge Register, the Register of Congenital Malformations and the Cause of Death Register. VLBWI had lower developmental and behavioural scores compared to the controls in all FTF domains. In VLBWI, the scores were less optimal, the lower the gestational age was. The time of birth, birth hospital level and district were not associated with the developmental and behavioural scores in VLBWI. In conclusion, short duration of pregnancy adversely influences development and behaviour in VLBWI. Despite differences previously demonstrated in mortality related to time and place of birth, there were no differences in developmental and behavioural scores in VLBWI according to the time of birth, birth hospital level or district. Thus, the survival advantage in level III hospitals seems not to be gained at the expense of behavioural or developmental problems.

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Motivations of Mothers to Enroll Their Newborn Infants in General Clinical Research on Well-Infant Care and Development

Cited by 24 publications

References 14 publications

Factors influencing parental consent for participation in clinical research involving their children in Egypt

Factors influencing parental consent for participation in clinical research involving their children in Egypt

Health benefit for the child and promotion of the common good were the two most important reasons for participation in the FinIP vaccine trial

Development and behaviour of 5-year-old very low birthweight infants

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