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Article ; Online: "We are just not sure what that means or if it's relevant": Uncertainty when gathering family history information in South African prenatal genetic counseling consultations.

Scott, Megan / Watermeyer, Jennifer / Wessels, Tina-Marie

Social science & medicine (1982)

2023 Volume 342, Page(s) 116555

Abstract: Uncertainty impacts the process of health communication. The management and tolerance of uncertainty during healthcare discussions have gained renewed focus due to the growing challenge of obtaining and delivering complex health information, and the ... ...

Abstract	Uncertainty impacts the process of health communication. The management and tolerance of uncertainty during healthcare discussions have gained renewed focus due to the growing challenge of obtaining and delivering complex health information, and the offer of health services in diverse contexts. Prenatal genetic counseling (GC) provides education, support and testing options for patients and couples facing a genetic or congenital diagnosis or risk during pregnancy. Gathering detailed and accurate family history information is essential to determine a patient's genetic risk. In South Africa, contextual factors such as patient literacy, language diversity, limited written patient health records, and a lack of familiarity with GC services may increase the potential for misunderstandings during GC consultations. This study uses a qualitative sociolinguistic approach to analyse 9 video-recorded South African prenatal GC consultations to understand the impact of uncertainty on the process of gathering family history information. The findings reveal uncertainty is introduced in different ways during family history taking. This includes when patients have no knowledge about their family history; when they have some knowledge but the details are unclear; or when patients have knowledge but the details are confusing. Uncertainty can lead to interactional trouble in the form of knowledge asymmetries, interrogative questioning, reversals in epistemic authority, and the potential for mistrust. Suggestions are made for how genetic specialists can manage uncertainty in GC family history taking. These include recognizing contextual sources of uncertainty, understanding how patients may respond to uncertainty and being aware of personal responses to moments of discomfort. Specific communication training recommendations and video-based sociolinguistic methods to enhance reflection and communication practice are highlighted. These approaches may enhance the effectiveness of GC communication and strengthen patient-specialist relationships, especially in diverse settings.
MeSH term(s)	Female ; Pregnancy ; Humans ; Genetic Counseling ; Uncertainty ; South Africa ; Communication ; Language
Language	English
Publishing date	2023-12-29
Publishing country	England
Document type	Journal Article
ZDB-ID	4766-1
ISSN	1873-5347 ; 0037-7856 ; 0277-9536
ISSN (online)	1873-5347
ISSN	0037-7856 ; 0277-9536
DOI	10.1016/j.socscimed.2023.116555
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Article ; Online: A balancing act: Non-directive communication, risk perceptions, and meeting patient needs in genetic counseling: A South African case study.

Scott, Megan / Watermeyer, Jennifer / Wessels, Tina-Marie

Journal of genetic counseling

2023 Volume 33, Issue 2, Page(s) 462–472

Abstract: Genetic counseling (GC) traditionally follows a non-directive counseling approach. Although a cornerstone of GC teaching and theory, there has been debate on whether GC is, can be, or should be a patient-led service due to challenges in practice, as well ...

Abstract	Genetic counseling (GC) traditionally follows a non-directive counseling approach. Although a cornerstone of GC teaching and theory, there has been debate on whether GC is, can be, or should be a patient-led service due to challenges in practice, as well as the advancement and complexity of genetic testing. Personal risk perceptions and patient expectations within particular contexts may further affect how genetic counselors discuss risk information, even while attempting to remain neutral. Less is known about the process of GC communication in non-Western settings. This paper presents empirical evidence from a South African prenatal GC consultation where tensions become apparent due to differing risk perceptions and expectations between a genetic counselor and a patient, which ultimately impacts non-directive communication practice. The case study forms part of a larger qualitative study focusing on risk and uncertainty communication within GC consultations in Cape Town, South Africa. A blended sociolinguistic approach drawing on principles of conversation analysis (CA) and theme-orientated discourse analysis (TODA) provides evidence of the complexity of imparting risk information and challenging patients to reflect on their decision-making, whilst refraining from sharing personal risk perceptions during everyday practice. The case study demonstrates how a genetic counselor may become implicitly and explicitly directive in their communication approach within the same consult which may reveal their personal risk perceptions on the matter discussed. In addition, the case study reveals how a genetic counselor may grapple with the dilemma of honoring the non-directive guidelines of the profession, whilst simultaneously supporting a patient who requests advice. The ongoing debate on non-directive counseling, decision-making, and patient care in GC is important for the reflection and development of the profession to understand how to assist and support patients facing sensitive and difficult decisions, in a meaningful, and contextually-tailored manner.
MeSH term(s)	Genetic Counseling ; Humans ; South Africa ; Communication ; Female
Language	English
Publishing date	2023-06-16
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Case Reports
ZDB-ID	1117799-8
ISSN	1573-3599 ; 1059-7700
ISSN (online)	1573-3599
ISSN	1059-7700
DOI	10.1002/jgc4.1741
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Article ; Online: Neuropsychological and ASD phenotypes in rare genetic syndromes: A critical review of the literature.

Bush, Lauren / Scott, Megan N

The Clinical neuropsychologist

2021 Volume 36, Issue 5, Page(s) 993–1027

Abstract: Objective: Autism spectrum disorder (ASD) is a complex neurodevelopmental condition characterized by core deficits in social communication and restricted and repetitive behaviors and interests. Recent advances in clinical genetics have improved our ... ...

Abstract	Objective: Autism spectrum disorder (ASD) is a complex neurodevelopmental condition characterized by core deficits in social communication and restricted and repetitive behaviors and interests. Recent advances in clinical genetics have improved our understanding of genetic syndromes associated with ASD, which has helped clarify distinct etiologies of ASD and document syndrome-specific profiles of neurocognitive strengths and weaknesses. Pediatric neuropsychologists have the potential to be impactful members of the care team for children with genetic syndromes and their families. Method: We provide a critical review of the current literature related to the neuropsychological profiles of children with four genetic syndromes associated with ASD, including Tuberous Sclerosis Complex (TSC), fragile X syndrome (FXS), 22q11.2 deletion syndrome, and Angelman syndrome. Recommendations for assessment, intervention, and future directions are provided. Results: There is vast heterogeneity in terms of the cognitive, language, and developmental abilities of these populations. The within- and across-syndrome variability characteristic of genetic syndromes should be carefully considered during clinical evaluations, including possible measurement limitations, presence of intellectual disability, and important qualitative differences in the ASD-phenotypes across groups. Conclusions: Individuals with genetic disorders pose challenging diagnostic and assessment questions. Pediatric neuropsychologists with expertise in neurodevelopmental processes are well suited to address these questions and identify profiles of neurocognitive strengths and weaknesses, tailor individualized recommendations, and provide diagnostic clarification.
MeSH term(s)	Autism Spectrum Disorder/complications ; Autism Spectrum Disorder/diagnosis ; Autism Spectrum Disorder/genetics ; Child ; Fragile X Syndrome/complications ; Fragile X Syndrome/diagnosis ; Fragile X Syndrome/genetics ; Humans ; Intellectual Disability/genetics ; Neuropsychological Tests ; Phenotype
Language	English
Publishing date	2021-09-27
Publishing country	England
Document type	Journal Article ; Review
ZDB-ID	639080-8
ISSN	1744-4144 ; 0920-1637 ; 1385-4046
ISSN (online)	1744-4144
ISSN	0920-1637 ; 1385-4046
DOI	10.1080/13854046.2021.1980111
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Article ; Online: Considerations for paediatric student-led telepractice in speech-language therapy: A pilot observational study from South Africa.

Watermeyer, Jennifer / Nattrass, Rhona / Beukes, Johanna / Madonsela, Sonto / Scott, Megan

International journal of language & communication disorders

2023 Volume 59, Issue 2, Page(s) 665–677

Abstract: Background: COVID-19 necessitated emergency telepractice for student-led speech-language therapy clinical practicals in training institutions, with limited preparation and evidence-based guidelines. Beyond the pandemic, practitioners and university ... ...

Abstract	Background: COVID-19 necessitated emergency telepractice for student-led speech-language therapy clinical practicals in training institutions, with limited preparation and evidence-based guidelines. Beyond the pandemic, practitioners and university training sites are likely to continue to offer telepractice necessitating thorough preparation for telepractice services underpinned by a comprehensive understanding of the complexities involved in online therapy. Aims: Adopting realist evaluation principles, our aim in this paper was to explore broadly what works and does not work in a set of student-led telepractice sessions in a diverse, resource-limited context. The broader goal of this project was to provide evidence-based support to enhance the efficiency and success of telepractice sessions in student clinical training contexts. Methods & procedures: We used qualitative observational methods with reflexive thematic analysis to analyse 28 video recordings and 61 observation notes of student-led paediatric telepractice sessions from a South African university clinic as part of a pilot study. Outcomes & results: We identified four overarching considerations for student-led telepractice: (1) additional, specific preparation is required, (2) with greater management of technology and adaptation of tasks, especially during times of poor connectivity; (3) telepractice relies heavily on caregiver input and collaboration; and (4) promoting engagement online, holding a client's attention, building rapport and offering reinforcement are critical skills that are complicated by the lack of face-to-face contact. Conclusions & implications: Our findings indicate that telepractice pedagogy needs to be explicitly taught and students require practical assistance as they learn how to use this service delivery approach effectively. There are some aspects peculiar to telepractice that require unique consideration and planning, especially in contexts where service providers and users may be unfamiliar with this form of service provision. The findings of this pilot study can be used by clinical educators and student clinicians to enhance clinical training opportunities involving telepractice. What this paper adds: What is already known on this subject Many speech-language therapy (SLT) student clinicians had to transition quickly to telepractice service provision during COVID-19 with limited existing guidelines and support, especially in contexts where teletherapy is typically non-existent or difficult to access. Although there is some literature available on experiences of telepractice, there is very little evidence-based research which explores the mechanics of such sessions in real-time and which offers practical support to student clinicians and clinical educators engaging in this mode of service delivery. What this study adds This pilot study examined video-recorded, student-led, paediatric, speech-language teletherapy sessions to understand challenges and considerations involved in using telepractice as a clinical training tool. Findings show that additional preparation for telepractice sessions is required, particularly in contexts of poor digital literacy; students must learn to manage technology, especially when connectivity poses a challenge, and adapt therapy tasks for online work with clients; telepractice relies heavily on caregiver input and collaboration, more so than in in-person consultations, and this relationship requires careful management; and promoting engagement online, holding a client's attention, building rapport and offering reinforcement are critical yet challenging skills in telepractice. What are the potential or actual clinical implications of this work? Our findings highlight a need to teach telepractice pedagogy explicitly and support students practically in learning how to provide therapy effectively via this mode of service delivery. Observational methods for studying practices in recorded telepractice sessions can be used as part of a reflective approach to clinical training. Using already available data allowed us to unpack the 'messy reality' of clinical training using telepractice.
MeSH term(s)	Humans ; Child ; South Africa ; Pilot Projects ; Speech ; Language Therapy ; Students ; COVID-19
Language	English
Publishing date	2023-09-29
Publishing country	United States
Document type	Observational Study ; Journal Article
ZDB-ID	1415919-3
ISSN	1460-6984 ; 1368-2822
ISSN (online)	1460-6984
ISSN	1368-2822
DOI	10.1111/1460-6984.12958
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Article: Modification of the Tumor Microenvironment Enhances Anti-PD-1 Immunotherapy in Metastatic Melanoma.

Shi, Guilan / Scott, Megan / Mangiamele, Cathryn G / Heller, Richard

Pharmaceutics

2022 Volume 14, Issue 11

Abstract: Resistance to checkpoint-blockade treatments is a challenge in the clinic. Both primary and acquired resistance have become major obstacles, greatly limiting the long-lasting effects and wide application of blockade therapy. Many patients with metastatic ...

Abstract	Resistance to checkpoint-blockade treatments is a challenge in the clinic. Both primary and acquired resistance have become major obstacles, greatly limiting the long-lasting effects and wide application of blockade therapy. Many patients with metastatic melanoma eventually require further therapy. The absence of T-cell infiltration to the tumor site is a well-accepted contributor limiting immune checkpoint inhibitor efficacy. In this study, we combined intratumoral injection of plasmid IL-12 with electrotransfer and anti-PD-1 in metastatic B16F10 melanoma tumor model to increase tumor-infiltrating lymphocytes and improve therapeutic efficacy. We showed that effective anti-tumor responses required a subset of tumor-infiltrating CD8
Language	English
Publishing date	2022-11-10
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2527217-2
ISSN	1999-4923
ISSN	1999-4923
DOI	10.3390/pharmaceutics14112429
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Article ; Online: To trust or not to trust: an exploratory qualitative study of personal and community perceptions of vaccines amongst a group of young community healthcare workers in Soweto, South Africa.

Watermeyer, Jennifer / Scott, Megan / Kapueja, Lethu / Ware, Lisa Jayne

Health policy and planning

2022 Volume 37, Issue 9, Page(s) 1167–1176

Abstract: As South Africa debates the implementation of mandatory vaccination policies to address coronavirus disease 2019 (COVID-19) vaccine hesitancy, many adults remain unpersuaded of the need and benefits of vaccination. Several surveys suggest that this is ... ...

Abstract	As South Africa debates the implementation of mandatory vaccination policies to address coronavirus disease 2019 (COVID-19) vaccine hesitancy, many adults remain unpersuaded of the need and benefits of vaccination. Several surveys suggest that this is particularly true for younger adults and for those living in low-income communities. Therefore, we sought the views of youth training to become community health workers (CHWs) as a youth group at the intersection of the community and the health system. This research was conducted in a township of South Africa, a country with a long history of political mistrust. Using semi-structured interviews and an interview guide, we explored young CHWs' perceptions (n = 20) of vaccine hesitancy for themselves, their peers and the community. Audio-recorded interviews were transcribed, and thematic analysis was undertaken. Findings suggest widespread COVID-19 vaccine hesitancy in this community, especially amongst young people. Reported reasons for this hesitancy appear linked to a complex interrelated network of factors, including 'uncertainty' about the outcome and effectiveness of the vaccines; 'fear' of the vaccines, driven by a myriad of rumours and conspiracy theories within the community; a 'lack of control' over other people's behaviour and a desire not to be controlled especially by the government but at the same time a resignation towards impending mandatory vaccine policies and a 'lack of trust' particularly in the government's intentions with vaccine roll-out and their health messaging. While mandatory vaccination policies in several organizations have shown success, with South Africa's complex social history and recent civil unrest, the roll-out of any mandatory vaccination policy will require careful health messaging with a focus on trust-building between communities, health systems and authorities through more personalized approaches that consider contextual nuances.
MeSH term(s)	Adolescent ; Adult ; COVID-19/prevention & control ; COVID-19 Vaccines ; Community Health Services ; Health Knowledge, Attitudes, Practice ; Humans ; South Africa ; Vaccination ; Vaccines
Chemical Substances	COVID-19 Vaccines ; Vaccines
Language	English
Publishing date	2022-07-26
Publishing country	England
Document type	Journal Article
ZDB-ID	632896-9
ISSN	1460-2237 ; 0268-1080
ISSN (online)	1460-2237
ISSN	0268-1080
DOI	10.1093/heapol/czac060
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Article ; Online: The discovery of multiple active mys-related LTR-retroelements within the Neotominae subfamily of cricetid rodents.

Kass, David H / Beatty, Sarah / Smith, Ashlee / Scott, Megan / Shah, Dishita / Czaplicki, Mary

Genetica

2023 Volume 151, Issue 3, Page(s) 179–199

Abstract: Retrotransposon families in the rodent family Cricetidae have been understudied in contrast to Muridae, both taxa classified within the superfamily Muroidea. Therefore, we carried out a study to advance our knowledge of the unique mys LTR-retroelement ... ...

Abstract	Retrotransposon families in the rodent family Cricetidae have been understudied in contrast to Muridae, both taxa classified within the superfamily Muroidea. Therefore, we carried out a study to advance our knowledge of the unique mys LTR-retroelement identified in Peromyscus leucopus, by incorporating intra-ORF PCR, quantitative dot blots, DNA and protein library screens, the generation of molecular phylogenies, and analyses of orthologous LTR-retroelement loci. These analyses led to the discovery of three additional related families of LTR-retroelements, which include a 2900 bp full-length element of mys-related sequences (mysRS), an 8000 bp element containing the mys ORF1 sequence (mORF1) with ERV-related sequences downstream in the reverse orientation, as well as an 1800 bp element primarily consisting of mys ORF2 (mORF2) related sequences flanked by LTRs. Our data revealed only a few full-length mys elements among genera of the Neotominae subfamily of cricetid rodents, most existing as partial copies. The mysRS and mORF1 elements are also limited to the genomes of the Neotominae subfamily, whereas mORF2 appears to be restricted to the Peromyscus genus. Molecular phylogenies demonstrating concerted evolution along with an assessment of orthologous loci in Peromyscus for the presence or absence of elements are consistent with activity of these novel LTR-retroelement families within this genus. Together with known activity of various families of non-LTR retroelements in Peromyscus species, we propose that retrotransposons have been continually contributing to the dynamics of Peromyscus genomes promoting genomic diversity and may be correlated with the evolution of more than 50 identified Peromyscus species.
MeSH term(s)	Animals ; Retroelements ; Rodentia/genetics ; Peromyscus/genetics ; Terminal Repeat Sequences ; Genome ; Phylogeny ; Evolution, Molecular
Chemical Substances	Retroelements
Language	English
Publishing date	2023-03-04
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	2165-9
ISSN	1573-6857 ; 0016-6707
ISSN (online)	1573-6857
ISSN	0016-6707
DOI	10.1007/s10709-023-00183-z
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Article ; Online: Real-world clinical evaluation of natural and induced vasomotor symptoms in the USA and Europe.

Kingsberg, Sheryl / Banks, Victoria / Caetano, Cecilia / Janssenswillen, Cecile / Moeller, Carsten / Schoof, Nils / Lee, Lauren / Scott, Megan / Nappi, Rossella E

Climacteric : the journal of the International Menopause Society

2024 , Page(s) 1–9

Abstract: Objective: This study aimed to examine physicians' and patients' perceptions regarding symptom burden and impact in women experiencing natural vasomotor symptoms (nVMS) or vasomotor symptoms induced by endocrine therapy for breast cancer (iVMS).: ... ...

Abstract	Objective: This study aimed to examine physicians' and patients' perceptions regarding symptom burden and impact in women experiencing natural vasomotor symptoms (nVMS) or vasomotor symptoms induced by endocrine therapy for breast cancer (iVMS). Methods: The cross-sectional survey based on real-world clinical consultations was conducted in the USA and five European countries. Obstetrician-gynecologists, primary-care physicians and oncologists provided demographic and symptom data for patients experiencing VMS; patients optionally self-reported their experiences via questionnaires, including their symptom profile and work/activity burden through the Menopause Quality of Life (MENQOL) and Work Productivity and Activity Impairment (WPAI) tools. Results: Physicians completed survey forms on 2451 consulting patients; patients completed 1029 questionnaires. nVMS and iVMS severity was significantly associated with the severity of mood symptoms and sleep disturbances ( Conclusion: Significant burden from the triad of natural or induced menopausal symptoms, sleep disturbances and mood changes affected women's daily activities, work and quality of life more than vasomotor symptoms alone.
Language	English
Publishing date	2024-05-02
Publishing country	England
Document type	Journal Article
ZDB-ID	1469153-x
ISSN	1473-0804 ; 1369-7137
ISSN (online)	1473-0804
ISSN	1369-7137
DOI	10.1080/13697137.2024.2340472
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Article: A 55-Year-Old Male Presenting With a Lower Extremity Rash: A Case of Immunoglobulin A (IgA) Nephropathy.

Denha, Eric / Rahim, Ali / Modi, Sunjay / Oyibo, Oghenekpaobor / Scott, Megan

Cureus

2021 Volume 13, Issue 3, Page(s) e14165

Abstract: Immunoglobulin A (IgA) nephropathy, mesangial deposition of IgA in renal parenchyma, typically presents with hematuria and proteinuria. Leukocytoclastic vasculitis (LCV), a small-vessel vasculitis, can present secondary to IgA. We will discuss a case of ... ...

Abstract	Immunoglobulin A (IgA) nephropathy, mesangial deposition of IgA in renal parenchyma, typically presents with hematuria and proteinuria. Leukocytoclastic vasculitis (LCV), a small-vessel vasculitis, can present secondary to IgA. We will discuss a case of secondary IgA nephropathy with concomitant LCV in a patient with reactivated hepatitis C. A 55-year-old male with decompensated alcoholic cirrhosis presented for a bilateral lower-extremity rash. The patient was diagnosed with IgA nephropathy, by kidney biopsy, and skin biopsy showing LCV. Further investigation revealed hepatitis C viral load was 275,000. We present a rare presentation of secondary IgA nephropathy with concomitant LCV, which we hypothesize was secondary to reactivation of hepatitis C.
Language	English
Publishing date	2021-03-29
Publishing country	United States
Document type	Case Reports
ZDB-ID	2747273-5
ISSN	2168-8184
ISSN	2168-8184
DOI	10.7759/cureus.14165
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Article ; Online: Perceived challenges in the informed consent process: Mismatches between enrollers and researchers at a South African clinical research site.

Scott, Megan / Watermeyer, Jennifer / Nolle, Samantha / Penn, Claire

Developing world bioethics

2019 Volume 19, Issue 4, Page(s) 206–214

Abstract: Enrollers play a critical yet often overlooked role in clinical research, particularly in informed consent processes. Study retention may depend in part on how complex information is conveyed to potential participants. This qualitative study aimed to ... ...

Abstract	Enrollers play a critical yet often overlooked role in clinical research, particularly in informed consent processes. Study retention may depend in part on how complex information is conveyed to potential participants. This qualitative study aimed to assess communicative barriers during consent and enrolment in two South African TB/HIV clinical studies. In particular, we compared our own perceptions of potential challenges to consent with that of thirteen enrollers, gained via reflective journaling and focus group discussions. Some overlap of identified challenges was evident, including terminology, jargon and consent document format. However there were mismatches to identified challenges. Enrollers provided further insights into potential challenges to consent, in particular, blood withdrawal, discussion of sexual issues and misunderstanding of study participation. Enrollers also reported feeling ill-equipped to provide counselling when participants became distressed. We offer several recommendations for strengthening the inclusion of enrollers in the development of clinical research protocols and consent documents.
MeSH term(s)	Biomedical Research/ethics ; Communication Barriers ; Counseling ; HIV Infections ; Health Literacy/statistics & numerical data ; Humans ; Informed Consent/standards ; Qualitative Research ; Research Personnel ; Terminology as Topic ; Tuberculosis
Language	English
Publishing date	2019-01-29
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2049034-3
ISSN	1471-8847 ; 1471-8731
ISSN (online)	1471-8847
ISSN	1471-8731
DOI	10.1111/dewb.12218
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