Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Whitehead, Nedra; Brown, D. J. F.; Layton, Christine

doi:10.3768/rtipress.2010.mr.0014.1002

Cited by 3 publications

(2 citation statements)

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“…[13][14][15][16]55 whereas studies that have explicitly considered harms (although not overdiagnosis) showed some acknowledgment by parents or members of the public but do not illuminate how harms and benefits should be traded off. 1,9,54,56 These findings also add to a broader literature on attitudes toward population screening by exploring several complex harms. [57][58][59][60][61][62][63][64][65][66] Specifically, that 100% of our respondents showed a statistically significant preference to avoid harms (FPs, overdiagnosis) is important, because misunderstanding of risk-based harms is common, 67 and recent work exploring attitudes toward overdiagnosis in the context of breast cancer screening has shown considerable confusion as well as limited valuation.…”

Section: Figurementioning

confidence: 56%

Public Perceptions of the Benefits and Risks of Newborn Screening

et al. 2015

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Section: Figurementioning

confidence: 56%

Public Perceptions of the Benefits and Risks of Newborn Screening

et al. 2015

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“…Based on a literature review 19 and input from clinicians, genetic counselors, and geneticists at the University of North Carolina at Chapel Hill (UNC), we developed our DCE using an initial set of attributes and attribute levels. These attributes and levels were then refined using input from 10 cognitive interviews conducted with parents of children under the age of 5 years.…”

Section: Methodsmentioning

confidence: 99%

Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment

Lewis

Stine

Paquin

et al. 2018

Genetics in Medicine

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Purpose Application of whole exome and whole genome sequencing is likely to increase in clinical practice, public health contexts, and research. We examined how parental preferences for learning information from genome-scale testing is influenced by the characteristics of non-medically actionable genetic disorders in children, and assessed if preferences differed by gender and between African-American and White respondents. Methods We conducted a web-based discrete choice experiment with 1 289 parents of young children. Participants completed “choice tasks” using pairs of profiles describing sequencing results for hypothetical genetic disorders, selected the profile they believed would be more important to know, and answered questions that measured their level of distress. Results The likelihood that the disorder would develop given a true-positive test result was most important to parents. Parents showed greater interest in learning sequencing results for disease profiles with more severe manifestations. This was associated with greater distress. Differences by gender and race reflected small differences in magnitude, not direction. Conclusion Parents’ preferred learning results about genetic disorders with more severe manifestations, even when this knowledge was associated with increased distress. These results may help clinicians support parental decision making by revealing which types of sequencing results parents are interested in learning.

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Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana

et al. 2023

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ObjectiveThis study sought to explore the burden experienced by informal caregivers in caring for their children with sickle cell disease (SCD).DesignA qualitative exploratory design was employed in the study using in-depth interviews.SettingThe study was conducted at the sickle cell clinic of the Tamale Teaching Hospital, Ghana.ParticipantsData were gathered from 15 purposively selected informal caregivers, whose children with SCD received care at the sickle cell clinic of the Tamale Teaching Hospital, using a semistructured in-depth interview guide in May–June 2021. Their responses were audio-taped, transcribed and analysed using the reflexive thematic analysis approach.ResultsFive major themes emerged from data analysis. These were: the burden of children’s ill-health; financial burden; employment challenges; psychosocial burden and determinants of caregivers’ burden. These burdens destabilised the personal lives, financial standing, social relationships, and employment of caregivers in general and that of other immediate family members, thus, impacting family processes and health.ConclusionsHealth professionals must devise strategies for counselling, early diagnosis and effective management of children with SCD across Ghana. The Ministry of Health must subsidise medications and laboratory services for children with SCD to help minimise the financial burden on caregivers. Further, counselling and psychological support services must be established in hospitals to assist caregivers to cope effectively.

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Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Cited by 3 publications

References 35 publications

Public Perceptions of the Benefits and Risks of Newborn Screening

Public Perceptions of the Benefits and Risks of Newborn Screening

Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment

Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana

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