Parents like me: biosociality and lay expertise in self-help groups of parents of screen-positive newborns

Raz, Aviad E.; Amano, Yael; Timmermans, Stefan

doi:10.1080/14636778.2018.1451315

Cited by 8 publications

(5 citation statements)

References 46 publications

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“…One of the distinctive advantages of using data from websites like Reddit to understand changing health landscapes is that it allows researchers to capture the fast-changing nature of biomedical cultures and evaluate how such processes unfold via collective sense-making. Previous studies of unsettled patient status designation have emphasized interactions within patient groups to demonstrate the importance of peer support in navigating socio-medical spaces [ 52 ].…”

Section: Methodsmentioning

confidence: 99%

Medicalizing risk: How experts and consumers manage uncertainty in genetic health testing

et al. 2022

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Given increased prevalence of direct-to-consumer (DTC) genetic health tests in recent years, this paper delves into discourses among researchers at professional genomics conferences and lay DTC genetic test users on popular discussion website Reddit to understand the contested value of genetic knowledge and its direct implications for health management. Harnessing ethnographic observations at five conferences and a text -analysis of 52 Reddit threads, we find both experts and lay patient-consumers navigate their own versions of “productive uncertainty.” Experts develop genetic technologies to legitimize unsettled genomics as medical knowledge and mobilize resources and products, while lay patient-consumers turn to Internet forums to gain clarity on knowledge gaps that help better manage their genetic risk states. By showing how the uncertain nature of genomics serves as a productive force placing both parties within a mutually cooperative cycle, we argue that experts and patient-consumers co-produce a form of relational medicalization that concretizes “risk” itself as a disease state.

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Section: Methodsmentioning

confidence: 99%

Medicalizing risk: How experts and consumers manage uncertainty in genetic health testing

et al. 2022

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“… Fathers whose children were diagnosed with cystic fibrosis (n = 15) Individual interviews 23 Pruniski et al (2018) 2019 United States Pompe disease (PD) To examine the effects of receiving a positive newborn screening result for PD on families Mothers of children who were diagnosed with PD through newborn screening (n = 9) Individual interviews 24 Raz et al (2019) 2019 Israel PKU, CAH, hypothyroidism, MSUD, homocystinuria, or G6PD To examines the interface between newborn screening and prenatal diagnosis from the point-of-view of parents of screen positive children. Parents whose child was screen positive (n = 34) Individual interviews 25 Raz et al (2018) 2018 Israel PKU, CAH, hypothyroidism, MSUD, homocystinuria, or G6PD To examine the patterns of communication and interaction for peer support among parents of screen-positive children. Parents whose child was screen positive (n = 34) Individual interviews 26 Salm et al (2012) 2012 United States Cystic fibrosis or hypothyroidism To examine parents' reactions to newborn screening results and their recommendations for improving communication.…”

Section: Resultsmentioning

confidence: 99%

“…In other cases, parents reported wanting more information than was given by their healthcare providers. As a result, they sought other sources – primarily the internet or support organisations – in an attempt to increase their knowledge ( Carpenter et al, 2018 ; Patterson et al, 2015 ; Raz et al, 2018 ). As one father of a cystic fibrosis carrier child said, “I want all the information.…”

Section: Resultsmentioning

confidence: 99%

Absorbing it all: A meta-ethnography of parents’ unfolding experiences of newborn screening

White

Boardman

McNiven

et al. 2021

Social Science & Medicine

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In a context of increasing international dialogue around the appropriate means and ends of newborn screening programmes, it is critical to explore the perspectives of those directly impacted by such screening. This meta-ethnography uses a systematic review process to identify qualitative studies that focus on parents' experiences of newborn screening published in English-language academic journals from 2000 to 2019 (n = 36). The included studies represent a range of moments, outcomes, and conditions that illuminate discrete elements of the newborn screening journey. We draw on these varied studies to construct a diagram of possible newborn screening pathways and through so-doing identify a critical window of time between the signalling of a positive newborn screen and the end of the screening process. During this critical window of time, families navigate complex emotional reactions, information, and decisions. From an in-depth analysis of this data, we develop the concept of “absorptive capacity” as a lens through which to understand parents' responses to new and emerging information. Alongside this, we identify how the “concertinaing of time” – the various ways that parents experience the expansion and compression of time throughout and beyond the screening pathway – affects their absorptive capacities. This study underscores the need to move away from viewing newborn screening as a discrete series of clinical events and instead understand it as a process that can have far-reaching implications across time, space, and family groups. Using this understanding of screening as a starting point, we make recommendations to facilitate communication and support for screened families, including the antenatal provision of information to parents and accommodations for the fluctuations in parents’ absorptive capacities across the screening trajectory.

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“…Other studies have confirmed that clinicians remain the main source of health information and that, especially during health crises, people rely on health information from clinicians rather than the Internet (Gage & Panagakis 2012, Miller & West 2009. The Pew Research Center study also showed that 16% of adults have gone online in the past year to find others who share the same health concerns (Barker 2008, Fox & Duggan 2013, Raz et al 2018. Already in 2012, half of smartphone owners used their devices to get health information, and 20% relied on health apps (Fox & Duggan 2012).…”

Section: Digital Healthmentioning

confidence: 94%

Technologies and Health Inequities

Timmermans

Kaufman

2020

Annu. Rev. Sociol.

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Health technologies aim to improve individual and population health, but they may also exacerbate health disparities. Focusing on the specific design features of technologies, their availability, and their use, we present a conceptual framework to examine how health technologies may benefit some groups more than others by combining the fundamental causes of diseases theory with a technology-in-practice approach. We examine three classes of technologies that have been associated with health inequities: once-advanced technologies such as kidney dialysis and transplantation for end-stage renal disease, which have been plagued by issues of scarcity and fair distribution, generating racial disparities; the highly anticipated precision medicine promising to change the focus from population to individualized medicine; and digital technologies, which may herald a democratization of health care. Expected final online publication date for the Annual Review of Sociology, Volume 46 is July 30, 2020. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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Parents like me: biosociality and lay expertise in self-help groups of parents of screen-positive newborns

Cited by 8 publications

References 46 publications

Medicalizing risk: How experts and consumers manage uncertainty in genetic health testing

Medicalizing risk: How experts and consumers manage uncertainty in genetic health testing

Absorbing it all: A meta-ethnography of parents’ unfolding experiences of newborn screening

Technologies and Health Inequities

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