Information and consent for newborn screening: practices and attitudes of service providers

Kerruish, Nicola; Webster, Dianne; Dickson, N

doi:10.1136/jme.2007.023374

Cited by 23 publications

(51 citation statements)

References 25 publications

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“…Our findings are congruent with previous research that noted that the issue of consent is complex, with little consensus on the amount of parental involvement required for screening. 6,30,31 Other studies reported that providers who viewed obtaining consent as relatively easy (eg, midwives) appeared to favor an informed consent approach, in contrast to many providers who saw the process as time consuming and impractical (eg, pediatricians). 6 Meaningful parental understanding about NBS is a prerequisite for informed consent, but the importance of education is relevant even where screening is mandated.…”

Section: Discussionmentioning

confidence: 99%

“…23,24 To date, the literature concerning consent and newborn screening has generally focused on attitudes toward consent policy. 7,[25][26][27][28][29] Although this is revealing, occasionally showing conflicting attitudes toward the need for consent, 6,30,31 there is a lack of descriptive research that depicts how the offer of NBS is made to parents, making it difficult to determine the experience of consent in practice. Understanding the experiences of those actually involved in the consent process may provide valuable descriptive information for NBS programs and providers.…”

Section: Introductionmentioning

confidence: 99%

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Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

et al. 2016

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Consent processes for newborn bloodspot screening (NBS) are variable, with a lack of descriptive research that depicts how the offer of NBS is made to parents. We explored the experience, in practice, of consent for NBS. Semistructured interviews in two Canadian provinces were held with: (1) parents of children offered NBS (n = 32); and (2) health-care professionals involved in the NBS process (n = 19). Data on recollections of NBS, including consent processes, were utilized to identify emerging themes using the method of constant comparison. Three themes were relevant to NBS consent: (1) The 'offer' of NBS; (2) content and timing of information provision; and (3) the importance of parental experiences for consent decisions. Recollections of consent for NBS were similar between jurisdictions. Excepting midwives and their patients, NBS was viewed as a routine part of giving birth, with little evidence of an informed consent process. Although most parents were satisfied, all respondents suggested information about NBS be provided long before the birth. Accounts of parents who declined screening highlight the influence of parental experiences with the heel prick process in screening decisions. Findings further our understanding of consent in practice and highlight areas for improvement in parent-provider interactions.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

et al. 2016

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“…This has been shown to result in health professionals assuming that it is someone else's responsibility. 69,71 These issues appear to feed into another narrative in the data about who is responsible for ensuring that parents have the relevant information. Hayeems et al 61 found that health professionals recognised their responsibility to provide parents with information by signposting, but felt that it was the responsibility of parents to educate themselves.…”

Section: Relevant Informationmentioning

confidence: 99%

“…Interestingly, even health professionals have reported that parents do not receive any information. 69 Although their study took place in a research setting, Hargreaves et al 70 showed that midwives would sometimes select not to give women leaflets if they felt that they would not be able to understand them or appeared uninterested. Also, if parents were having their second or subsequent child, either party may have assumed that they already had knowledge and so NBS information was not given.…”

Section: Relevant Informationmentioning

confidence: 99%

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Ulph

Wright

Dharni

et al. 2017

Health Technol Assess

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BackgroundParticipation in the UK Newborn Bloodspot Screening Programme (NBSP) requires parental consent but concerns exist about whether or not this happens in practice and the best methods and timing to obtain consent at reasonable cost.ObjectivesTo collate all possible modes of prescreening communication and consent for newborn (neonatal) screening (NBS); examine midwives’, screening professionals’ and users’ views about the feasibility, efficiency and impact on understanding of each; measure midwives’ and parents’ preferences for information provision; and identify key drivers of cost-effectiveness for alternative modes of information provision.DesignSix study designs were used: (1) realist review – to generate alternative communication and consent models; (2) qualitative interviews with parents and health professionals – to examine the implications of current practice for understanding and views on alternative models; (3) survey and observation of midwives – to establish current costs; (4) stated preference surveys with midwives, parents and potential future parents – to establish preferences for information provision; (5) economic analysis – to identify cost-effectiveness drivers of alternative models; and (6) stakeholder validation focus groups and interviews – to examine the acceptability, views and broader impact of alternative communication and consent models.SettingProviders and users of NBS in England.ParticipantsStudy 2: 45 parents and 37 health professionals; study 3: 22 midwives and eight observations; study 4: 705 adults aged 18–45 years and 134 midwives; and study 6: 12 health-care professionals and five parents.ResultsThe realist review identified low parental knowledge and evidence of coercive consent practices. Interview, focus group and stated preference data suggested a preference for full information, with some valuing this more than choice. Health professionals preferred informed choice models but parents and health professionals queried whether or not current consent was fully informed. Barriers to using leaflets effectively were highlighted. All studies indicated that a ‘personalised’ approach to NBS communication, allowing parents to select the mode and level of information suited to their learning needs, could have added value. A personalised approach should rely on midwife communication and should occur in the third trimester. Overall awareness was identified as requiring improvement. Starting NBS communication by alerting parents that they have a choice to make and telling them that samples could be stored are both likely to enhance engagement. The methods of information provision and maternal anxiety causing additional visits to health-care professionals were the drivers of relative cost-effectiveness. Lack of data to populate an economic analysis, confirmed by value of information analysis, indicated a need for further research.LimitationsThere are some limitations with regard to the range of participants used in studies 2 and 3 and so caution should be exercised when interpreting some of the results.ConclusionsThis project highlighted the importance of focusing on information receipt and identified key communication barriers. Health professionals strongly preferred informed consent, which parents endorsed if they were made aware of sample storage. Uniform models of information provision were perceived as ineffective. A choice of information provision was supported by health professionals and parents, which both enhances cost-effectiveness and improves engagement, understanding and the validity of consent. Remaining uncertainties suggest that more research is needed before new communication modes are introduced into practice. Future research should measure the impact of the suggested practice changes (informing in third trimester, information toolkits, changed role of midwife).Trial registrationCurrent Controlled Trials ISRCTN70227207.FundingThis project was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 21, No. 55. See the NIHR Journals Library website for further project information.

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“…While the knowledge regarding parental understanding, preferences, and satisfaction toward NBS education during the prenatal period is growing [6][7][8][9][10] and, in many cases, the lack thereof is explicitly criticized [11], the attitudes and reflections of health professionals on parental education and informed consent for NBS remains under-investigated [12]. This paper presents the findings of an empirical study exploring the views of officials and practicing physicians involved in the NBS process in Israel regarding issues of informed consent and parental education.…”

Section: Introductionmentioning

confidence: 99%

Indifferent or Uninformed? Reflections of Health Professionals on Parental Education and Consent for Expanded Newborn Screening in Israel, 2008–2016

Zuckerman

2017

IJNS

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Abstract:Background: This study explored the views of health professionals regarding parental education and informed consent for newborn screening (NBS) following the expansion of the NBS program in Israel. Methods: 24 in-depth interviews with 22 practitioners involved in NBS in Israel, and internationally, were conducted and analyzed qualitatively. Results and discussion: 1. Program creators, who were involved in the development, design, implementation, and delivery of the expanded NBS program, were concerned about the "indifferent" attitude of parents of newborns to NBS as opposed to their high awareness and utilization of prenatal screening. 2. Program creators evaluated program success by different standards of parental education and informed consent than did practitioners, who were involved solely or mostly in the delivery of NBS results. The latter were skeptical about the possibility of obtaining informed consent and expressed diverse views about desired levels of education and consent. Eight years later, parental indifference to NBS is still a major concern for program creators, but not for practitioners. Conclusions: Program creators, due to their role and direct responsibility, assess NBS as an independent, stand-alone process about which parents should be informed and educated. Therefore, they focus on the indifference of parents to NBS as a non-optimal achievement of one programmatic aspect. Practitioners, on the other hand, perceive the medical care of the newborn holistically, focusing on the overall well-being of the baby. Therefore, they would be satisfied if the best possible medical care is provided to the newborn, by screening, confirmatory diagnosis, and follow up, even if parents are less informed about the process.

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Information and consent for newborn screening: practices and attitudes of service providers

Cited by 23 publications

References 25 publications

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Indifferent or Uninformed? Reflections of Health Professionals on Parental Education and Consent for Expanded Newborn Screening in Israel, 2008–2016

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