Acceptability of childhood screening: a systematic narrative review

Carlton, Jill; Griffiths, Helen; Horwood, Anna M.; Mazzone, Paolo; Walker, Rachel; Simonsz, Huibert J.

doi:10.1016/j.puhe.2021.02.005

Cited by 12 publications

(8 citation statements)

References 57 publications

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“…Parents who declined NBS were more often in doubt concerning whether to participate or not, compared to NBS participants. In the literature, studies including parents that declined NBS are scarce [ 27 ]. A Canadian qualitative study showed that decisions among three declining parents were shaped by their previous experiences with blood collection [ 11 ].…”

Section: Discussionmentioning

confidence: 99%

“…This could indicate room for improvement in the information provision, by explaining or highlighting these consequences. A literature review showed that the main acceptability component identified for newborn screening and other screening interventions related to parental knowledge and understanding [ 27 ]. It remains to be seen whether improved information, or other factors such as timing of information provision, will increase knowledge and thus the willingness to participate among the parents who declined.…”

Section: Discussionmentioning

confidence: 99%

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Parents’ views on accepting, declining, and expanding newborn bloodspot screening

et al. 2022

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Introduction The goal of newborn bloodspot screening (NBS) is the early detection of treatable disorders in newborns to offer early intervention. Worldwide, the number of conditions screened for is expanding, which might affect public acceptance. In the Netherlands, participation is high (>99%), but little is known about how parents perceive NBS. This study assessed parents’ views on accepting, declining and expanding NBS. Methods A total of 804 of 6051 (13%) invited parents who participated in NBS in the Netherlands during the last two weeks of December 2019, and 48 of 1162 (4%) invited parents who declined participation in NBS in 2019 and 2020, completed a questionnaire. Results The most important reason for parents to participate in NBS was to prevent health complaints, whereas the most important reason to decline NBS was parents’ viewpoint on life and the belief that the heel prick would be painful for the child. Compared to NBS participants, respondents who declined NBS were more actively religious, considered alternative medicine or lifestyle more important, were less inclined to vaccinate their child for infectious diseases, and reported more doubt about NBS participation (all differences p < .001). Informed choice was lower among respondents who declined NBS (44%) compared to participants in NBS (83%, p < .001), mostly due to insufficient knowledge. Of the NBS participants, 95% were positive about NBS expansion. Most NBS participants agreed to include conditions that could unintentionally reveal a diagnosis in the mother instead of the child (86%) or a condition that may not cause symptoms until later in the child’s life (84%). Conclusion Most participants made an informed decision to participate in NBS and are positive about screening for more conditions. Insights into parents’ views on (non-)participation and expansion of NBS can help to ensure that NBS suits the population needs while safeguarding ethical principles for screening.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Parents’ views on accepting, declining, and expanding newborn bloodspot screening

et al. 2022

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“…Another nding of this review is a noticeable gap in the literature with a lack of studies exploring the acceptability of autism screening tools within CALD populations. The absence of acceptability studies impacts our understanding of the broader societal impact and is both academically and clinically relevant to ensure equitable and culturally competent screening (90). Without a clear understanding of how these tools are received within CALD communities, there may be inadvertent use of methods that are linguistically inappropriate or culturally insensitive.…”

Section: Discussionmentioning

confidence: 99%

Screening Tools for Autism in Culturally and Linguistically Diverse Paediatric Populations: A Systematic Review

Huda,

Hawker,

Cibralic

et al. 2023

Preprint

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Background Autism Spectrum Disorder (ASD) has varying prevalence rates worldwide, often higher in culturally diverse populations. Cultural differences can affect autism symptom recognition. Language barriers and differing healthcare attitudes may delay diagnosis and intervention. Most autism screening tools were developed in Western, predominantly Caucasian populations, and their appropriateness in culturally and linguistically diverse (CALD) contexts remains uncertain. There is a lack of comprehensive data on the accuracy of these tools in identifying autism in culturally and linguistically diverse groups. Consequently, it is unclear whether current screening tools are culturally sensitive and appropriate. Methods A research protocol was registered in PROSPERO (CRD42022367308). A comprehensive search of literature published from inception to October 2022 was conducted using the following databases: PubMed, Medline Complete, Scopus, PsychInfo and CINAHL Complete. The articles were screened using pre-determined inclusion and exclusion criteria. Data extracted included participant demographics, screening tool psychometric properties (validity, reliability, accuracy) and acceptability. A thematic narrative approach was used to synthesise results. Results From the initial retrieval of 2310 citations, 56 articles were included for analysis. The studies were conducted in 33 different countries with screening tools in the following languages: Chinese, Spanish, Korean, Turkish, Arabic, Kurdish, Persian, Serbian, Italian, French, Sinhala, Taiwanese, Finnish, Northern Soho, Albanian, German, Japanese, Vietnamese, Farsi, Greek and English. There was no data on acceptability of the screening tools in CALD populations. Validity, reliability, and accuracy ranged from poor to excellent with consistently high performance by screening tools devised within the populations they are intended for. Conclusions The review evaluated autism screening tools in culturally diverse populations, with a focus on validity, reliability, and acceptability. It highlighted variations in the effectiveness of these tools across different cultures, with high performance by tools devised specifically for the intended population, emphasizing the need for culturally sensitive screening tools. Further research is needed to improve culturally specific, reliable autism screening tools for equitable assessment and intervention in diverse communities.

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“…Organisational-and macro-level factors, such as existing peri-and postnatal care practice, national policies, funding and governance should all be evaluated with respect to implementation and quality improvement. Demographic and cultural characteristics of the infants and their families (e.g., ethnicity, insurance plans, education and distance to the hospital) [80] and acceptability of screening [132] may all be associated with NHS outcomes and should also be addressed relative to implementation and a quality improvement plan for a local NHS programme.…”

Section: Discussionmentioning

confidence: 99%

Protocol and programme factors associated with referral and loss to follow-up from newborn hearing screening: a systematic review

et al. 2022

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Background An effective newborn hearing screening programme has low referral rate and low loss to follow-up (LTFU) rate after referral from initial screening. This systematic review identified studies evaluating the effect of protocol and programme factors on these two outcomes, including the screening method used and the infant group. Methods Five databases were searched (latest: April 2021). Included studies reported original data from newborn hearing screening and described the target outcomes against a protocol or programme level factor. Studies were excluded if results were only available for one risk condition, for each ear, or for < 100 infants, or if methodological bias was observed. Included studies were evaluated for quality across three domains: sample, screening and outcome, using modified criteria from the Ottawa-Newcastle and QUADAS-2 scales. Findings from the included studies were synthesised in tables, figures and text. Results Fifty-eight studies reported on referral rate, 8 on LTFU rate, and 35 on both. Only 15 studies defined LTFU. Substantial diversity in referral and LTFU rate was observed across studies. Twelve of fourteen studies that evaluated screening method showed lower referral rates with aABR compared to TEOAE for well babies (WB). Rescreening before hospital discharge and screening after 3 days of age reduced referral rates. Studies investigating LTFU reported lower rates for programmes that had audiologist involvement, did not require fees for step 2, were embedded in a larger regional or national programme, and scheduled follow-up in a location accessible to the families. In programmes with low overall LTFU, higher LTFU was observed for infants from the NICU compared to WB. Conclusion Although poor reporting and exclusion of non-English articles may limit the generalisability from this review, key influential factors for referral and LTFU rates were identified. Including aABR in WB screening can effectively reduce referral rates, but it is not the only solution. The reported referral and LTFU rates vary largely across studies, implying the contribution of several parameters identified in this review and the context in which the programme is performed. Extra attention should be paid to infants with higher risk for hearing impairment to ensure their return to follow-up.

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Acceptability of childhood screening: a systematic narrative review

Cited by 12 publications

References 57 publications

Parents’ views on accepting, declining, and expanding newborn bloodspot screening

Parents’ views on accepting, declining, and expanding newborn bloodspot screening

Screening Tools for Autism in Culturally and Linguistically Diverse Paediatric Populations: A Systematic Review

Protocol and programme factors associated with referral and loss to follow-up from newborn hearing screening: a systematic review

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