Shaping Contexts and Developing Invitational Ethos in Response to Medical Authority: An Interview Study of Women Down Syndrome Advocates

Reed, Amy R.; Meredith, Stephanie

doi:10.5744/rhm.2020.1015

Cited by 2 publications

(3 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…However, given that many PAG staff are parents of a child with a genetic condition and/or personally affected, interviewees noted that PAG representatives with strong personal views on pregnancy termination and/or the social value of persons with the condition encountered an inherent conflict in counseling these parents. Indeed, research has found that some Down syndrome advocates limit their audience to those who have already decided to continue a pregnancy in order to avoid socio-politically fraught conversations around abortion (Reed and Meredith 2020). Nevertheless, most PAGs in our study made some attempt to support families throughout the decision-making process.…”

Section: Prenatal Support For Familiesmentioning

confidence: 90%

“…Parents often form the backbone of PAGs, as both volunteers and staff, and their experiences enrich the ability of PAGs to connect with future parents. However, research has shown that volunteer activities are more achievable for individuals who are older and/or more affluent (Nesbit et al 2018;Americorps, Office of Research and Evaluation 2021), and white families-especially white mothers-have historically comprised the majority of PAG staff and membership (Erkulwater 2018;Reed and Meredith 2020). Parents with the ability to devote time to nonprofit work are less likely to be from socially disadvantaged groups, and people from minorities and underserved communities may be less inclined to join groups in which they do not see their identities and experiences represented.…”

Section: Unmet Needs Of the Parent Communitymentioning

confidence: 99%

See 1 more Smart Citation

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

et al. 2023

View full text Add to dashboard Cite

A rapid increase in the reach and breadth of prenatal genetic screening and testing has led to an expanding need for prenatal support of families receiving this genetic information. As part of a larger study investigating prenatal preparation for a child with a genetic condition, we interviewed representatives of patient advocacy groups (PAGs) who support parents postdiagnosis. Groups supporting families with Down syndrome were often local or regional, while other groups were often national or international in scope. Groups varied in their willingness or ability to support families prior to making a pregnancy continuation decision, and participants reflected on ways they addressed these needs with individual counseling and referrals, if needed. Participants described supporting parents with information about conditions and a range of lived experiences for families, while referring families to healthcare professionals for technical questions and additional medical needs. PAGs also prioritized connecting parents experiencing a new diagnosis with other families for peer support and community-building, both in person and on social media. Participants discussed limitations, such as a lack of racially-concordant support, ability to offer resources in languages other than English, and a lack of funding to meet the expressed needs of families post-diagnosis. Overall, participants emphasized that the parenting experience of each child is unique, irrespective of a genetic diagnosis, an experience for which parents can never be "totally prepared."

show abstract

Section: Prenatal Support For Familiesmentioning

confidence: 90%

Section: Unmet Needs Of the Parent Communitymentioning

confidence: 99%

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

et al. 2023

View full text Add to dashboard Cite

show abstract

“…The productive overlaps across disability studies and RHM are complex but nevertheless highly generative for understanding how power circulates and participates in the meaning-making of embodied experience and difference. Work in this area, of course, has been ongoing, but recently there have been calls for additional scholarship at the intersections of disability and RHM (Reed & Meredith, 2020;Scott & Melonçon, 2019). My hope is that this book contributes to these conversations and brings disability studies to the fore for other rhetoricians of health and medicine.…”

Section: The Value Of a Praxiographic Approach To Storiesmentioning

confidence: 95%

Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness

Kessler

2022

View full text Add to dashboard Cite

Studying StigmaA Rhetorical Approach to Stories and Lived Experience SIX IN TEN ADULTS in the US live with at least one chronic condition, according to the Centers for Disease Control and Prevention (CDC, 2019a). In other words, over half the US population lives with at least one long-term, likely incurable, condition (CDC, 2021b; National Center for Chronic Disease Pre- vention & Health Promotion, 2012). Such conditions vary widely but include cancer, addiction, diabetes, obesity, Alzheimer's disease, and autoimmune conditions, among many others. Despite research demonstrating an already staggering prevalence of chronic conditions in the US, the number of Americans affected by chronic conditions is only estimated to rise. According to one report, "between 2000 and 2030 the number of Americans with chronic conditions will increase by 37 percent, an increase of 46 million people" (Anderson, 2010, p. 7; see also Wu & Green, 2000). The prevalence of chronic conditions alone is startling; however, concerns don't end there. As a category, chronic conditions disproportionately account for 75 to 90 percent of the overall healthcare costs in the US each year, an estimate that lands somewhere between two and three trillion dollars annually (

show abstract

Shaping Contexts and Developing Invitational Ethos in Response to Medical Authority: An Interview Study of Women Down Syndrome Advocates

Cited by 2 publications

References 0 publications

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness

Contact Info

Product

Resources

About