Parents' Experiences of Expanded Newborn Screening Evaluations

DeLuca, Jane M.; Kearney, Margaret H.; Norton, Sally A.; Arnold, Georgianne L.

doi:10.1542/peds.2010-3413

Cited by 67 publications

(105 citation statements)

References 51 publications

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“…26,[28][29][30]33,68,93 The finding that parents are not adequately informed fits with what is known from research conducted with parents after they have received their child's result, which shows that their awareness is linked to how well they adapt to the results. 99 There was also variation in the literature in how and when 29 parents should be informed about NBS and the level of detail sought. It may be that these factors make it impossible to design a uniform communication model that works optimally across all populations.…”

Section: Discussionmentioning

confidence: 99%

“…It is a concern that health professionals are not being adequately informed of the conditions being screened for as this has been shown to feed into parents' reactions when they first hear that their child may be affected. 34,99 The data suggest that one solution may be for midwives to provide information in group sessions and for parents to be able to access a national telephone line to receive further information, while simultaneously moving the time for informing parents to the third trimester. To adequately train the entire midwifery workforce and allow them the 30 minutes that they feel they would need with each parent using the current approach to communication is not likely to be feasible within current health-care budgets.…”

Section: What Does This Study Add?mentioning

confidence: 99%

See 1 more Smart Citation

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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Section: Discussionmentioning

confidence: 99%

Section: What Does This Study Add?mentioning

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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“…For example, the BSHG, among others, advise that clinicians only return results related to the reason for testing, arguing that returning results to asymptomatic children who have not yet shown symptoms makes these children "patients in waiting," which could cause psychosocial harm. 7,[9][10][11] All of these guidelines and recommendations reflect careful analysis of the relevant ethical considerations, including the potential risks and benefits of testing, but because they are largely based on hypothetical concerns, rather than empirical evidence of actual harm, they should be interpreted cautiously.…”

mentioning

confidence: 99%

Potential Psychosocial Risks of Sequencing Newborns

2016

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Various stakeholders have issued recommendations regarding the use of genomics in pediatrics. These guidelines are driven in part by concerns about psychosocial risks of disclosing predictive genomic information during childhood. As genomic sequencing becomes more commonly used in pediatric settings, it is important to systematically study the psychosocial impact of genomic sequencing of newborns, including the impact on family dynamics. Through review of the psychological and genetic counseling literature, we identify the following 3 domains of family dynamics that have potential to be impacted by the return of genomic results during the newborn period: perceived child vulnerability, parent-child bonding, and self and partner blame. In this article, we outline the complexity of studying these psychosocial outcomes and our plan to examine them in the BabySeq Project, a randomized controlled trial in both healthy and sick infants, in which the return of genomic information will be compared with standard of care. This trial has been registered at https:// clinicaltrials. gov/ ct2/ show/ NCT02422511 (identifier NCT02422511).

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“…However, the language used regarding the use of technical terms and the level of detailing of the information were classified, predominantly, as excellent and appropriate, as shown in the subscale "Public" (Figure 2). Thus, most websites evaluated in this study worried about developing their contents according to what is recommended by the literature, with an accessible language to the target audience regardless their schooling level (27)(28)(29) . The technical quality of the websites was proven appropriate in most evaluated websites (Figure 2).…”

Section: Discussionmentioning

confidence: 99%

Telessaúde: avaliação de websites sobre triagem auditiva neonatal na Língua Portuguesa

Chaves

Libardi

Agostinho-Pesse

et al. 2015

CoDAS

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RESUMO Objetivo: Verificar os aspectos de qualidade técnica e o conteúdo doswebsites sobre triagem auditiva neonatal na Língua Portuguesa. Métodos: Dezoito fonoaudiólogos, convidados de acordo com critérios de inclusão, selecionaram os descritores para a pesquisa dos websitespor meio da Técnica Delphi. Posteriormente, foram inseridos no Google Trends a fim de se acrescentar os termos possíveis de utilização pelos pais na busca de informações na internet sobre o assunto. Em seguida, foram inseridos no Google para pesquisa dos websites . Foram utilizados os seguintes instrumentos de avaliação: lista de tópicos sobre triagem auditiva neonatal, fórmula Flesch Reading Ease Score ,questionário Health-Related Web Site Evaluation Form Emory e o PageRank . Resultados: Os tópicos mais abordados nos 19 websites foram sobre os objetivos e benefícios da triagem auditiva neonatal, assim como o processo de diagnóstico audiológico. Os menos discutidos foram sobre o resultado falso-negativo, desenvolvimento da audição e da linguagem, resultado falso-positivo, acompanhamento audiológico, interpretação dos resultados - "Passa" / "Não passa", reteste e protocolo. Prevaleceu um nível de leitura dos textos considerado difícil, sendo os aspectos de qualidade técnica considerados de melhor qualidade os relacionados ao conteúdo, público, navegação e estrutura. Os resultados também demonstraram não existir uma cultura de inserir links noswebsites nacionais, o que os fizeram ser considerados de pouca relevância no Google. Conclusões: Os websites diferiram quanto aos aspectos abordados, assim como, há necessidade de revisar o nível de leitura dos conteúdos e os aspectos de qualidade técnica referentes à precisão e atualização das informações, autoria e links .

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Parents' Experiences of Expanded Newborn Screening Evaluations

Cited by 67 publications

References 51 publications

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

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

Potential Psychosocial Risks of Sequencing Newborns

Telessaúde: avaliação de websites sobre triagem auditiva neonatal na Língua Portuguesa

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