Susana Silva

• PhD in Sociology
• Invited Assistant Professor at University of Minho

In this Open Letter we bring together researchers from the Biosocial Birth Cohort Research (BBCR) network to reflect on interdisciplinary research and methods within birth cohorts and to draw attention to social science approaches to this field, which we argue are underutilized. A more comprehensive and consistent integration of social science appr...

Research about science and publics in the COVID-19 pandemic often focuses on public trust and on identifying and correcting public attitudes. Drawing on qualitative interviews with 209 residents in six countries—Austria, Bolivia, Germany, Italy, Mexico, and Portugal—this article uses the concept of performativity to explore how participants underst...

This scoping review examines the research landscape about publics’ views on the ethical challenges of AI. To elucidate how the concerns voiced by the publics are translated within the research domain, this study scrutinizes 64 publications sourced from PubMed® and Web of Science™. The central inquiry revolves around discerning the motivations, stak...

The promotion of health literacy was a key public health strategy during the COVID-19 pandemic. However, the role of social networks and relationships for support with health literacy-related tasks in the context of the COVID-19 pandemic is scarcely understood. Moving beyond traditional notions of health literacy, which focus on individual skills a...

Objectives: The sparse literature on the effect of a preterm delivery on parents' quality of life (QoL) yields inconsistent results, restricting their analysis to mothers. The present study aimed to assess the effect of a very preterm delivery on parents' gender-specific perception of QoL, 4 to 6 months after birth. Methods: A total of 117 paren...

There is a growing tendency toward the introduction of Big Data in police departments to improve the prevention and investigation of crime. However, there is little systematic knowledge about the perspectives of professionals in police forces regarding this technology. This article fills this gap by presenting a scoping review that systematizes emp...

PurposeResearch using gametes and embryos donated by reproductive and third-party donors contributed to substantial, albeit contentious achievements. The views of gamete donors and recipients on donation for research and the underpinning role of attitudes towards research have been seldom explored and are yet to be incorporated into ethical, legal,...

Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefit...

Background Data-intensive and needs-driven research can deliver substantial health benefits. However, concerns with privacy loss, undisclosed surveillance, and discrimination are on the rise due to mounting data breaches. This can undermine the trustworthiness of data processing institutions and reduce people's willingness to share their data. Invo...

Objectives The aim of this study was to explore concerns and coping mechanisms during the first national COVID-19 lockdown in Portugal. The general population provided statements via an open comment box as part of an online prospective study. Study design Internet-based open cohort study. Methods Individuals aged ≥16 years were eligible to partic...

Open Access resource available for research purposes. The data collected in this dataset are narratives exploring public policies, attitudes, individual behaviors, and the collective experiences of the involved communities regarding vaccination during the COVID-19 pandemic. The narratives were written by the members of the interdisciplinary resear...

Investigative genetic genealogy (IGG) is a technique for identifying criminal suspects that involves uploading a crime scene DNA profile to one or more genetic genealogy databases to identify a criminal offender’s genetic relatives and, eventually, locating the offender within the family tree in both cold and active law enforcement cases. Law enfor...

Background Adjustments to intended family size are strongly affected by life-course events, but data on childbearing plans after a very preterm delivery are lacking. This study intends to assess the childbearing intentions of mothers and fathers of very preterm infants, regarding the desired and intended number of children, the factors associated w...

Background The implications of sharing one's health data are far-reaching. Potential applications of health data range from the delivery of treatments tailored to individuals' characteristics to improvements in public health, while also posing concerns about privacy, social justice and equity. Making informed decisions about health data sharing thu...

The provision of care that is responsive to the preferences, needs and values of gamete donors is key to improving their recruitment and ensuring the functioning of gamete banks. This qualitative study aimed to explore gamete donors’ experiences about the facilitating and constraining human and system factors to donor-centred healthcare delivery in...

Drawing on the views of donors and recipients about anonymity in a country that is experiencing a transition towards non-anonymous gamete donation mandated by the Constitutional Court, we explore how the intersection between rights-based approaches and an empirical framework enhances recommendations for ethical policy and healthcare. Between July 2...

IntroductionThe use of sexual orientation and marital status as criteria for access to fertility treatments varies across countries, being recently discarded in Portugal. This originated a discussion on whether priority should be given to heterosexual married couples when resources are in short supply, causing controversy. Policy and practice align...

Introduction International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding h...

Public involvement in the governance of epidemiological and public health studies can foster needs-driven research, enhance participants’ recruitment, reduce attrition and improve the quality of and ethics in research and surveillance. However, it can also reinforce health inequalities if it fails to ensure public representation across socioeconomi...

Background Health systems are moving towards a personalisation of care. Personalised care relies on data-intensive research, which depends on active participation by citizens in data generation and information sharing. Collecting and sharing one's data for research can deliver several benefits. However, it also comes at a cost in time and effort th...

Background Public health genomics research has the potential to predict, prevent, diagnose and treat a large number of diseases. This demands access to large genomic datasets. Understanding people's motivations for and concerns with sharing genetic data is essential to promote engagement and to develop ethical, legal and social frameworks for genom...

Purpose Obesity-related knowledge predicts weight control but previous studies only comprise individuals with excessive weight and assess very specific aspects of knowledge. This study aims to evaluate several domains of obesity-related knowledge according to the body mass index (BMI) in a representative sample of Portuguese-speaking dwellers in ma...

Purpose Regulation of payment to gamete donors varies substantially across countries. The development of an ethically sustainable governance system of payments in gamete donation demands that the preferences of different stakeholders be heard. This study intends to contribute to improving the understanding of payment to gamete donors by analysing t...

Background: Public meanings attributed to parenthood may shape individuals' family planning and how involuntary childlessness is supported by governmental policies. This study aimed to evaluate the influence of reproductive trajectories and gender in the meanings attributed to parenthood, and to assess the psychometric characteristics of the Portu...

Introduction: Vaccination refusal is a global public health concern. There is a need to promote confidence in the importance, safety, and effectiveness of vaccines. This study aimed to analyze the factors and reasons associated with the decisions of caregivers to refuse childhood vaccination.Methods: Between May and June 2018, a telephone questionn...

Objective Empowering parents as health promoters may contribute to decrease the costs associated with prematurity. In Portugal, 8% and 1% of the births occurring in 2018 were preterm and very preterm, respectively. This study aimed to assess prematurity‐related knowledge with regard to its prevalence, causes and consequences, according to sociodemo...

Social support can obscure social gradients in health, but its role as a mediator between socioeconomic position (SEP) and quality of life (QoL) in older populations remains unknown. We aimed to examine to what extent social support mediates the association between SEP and overall QoL among older adults (aged 60–84 years). We studied a population-b...

Objective Early life adversity has been associated with increased risk of inflammation and inflammation-related diseases in adulthood. This study aimed to examine the association of childhood socioeconomic conditions with chronic low-grade inflammation over adolescence. Methods We used information on 2942 members (1507 girls and 1435 boys) of the...

Background: Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspective...

Background Early life adversity has been associated with increased risk of inflammation and inflammation-related diseases in adulthood. This study aimed to examine the association of parental socioeconomic position with chronic inflammation over adolescence. Methods We used information on 2942 members (1507 girls and 1435 boys) of the EPITeen coho...

Background The sheer growth of the health data shared and traded globally holds great promise and menace to public health. Big health data can foster scientific advancements with potential to heal millions across the globe. However, inerasable digital footprints left by the use of apps and digital services challenge people’s privacy and autonomy in...

Background Differences on the use of sexual orientation and marital status as criteria to define access to gamete donation persist in Europe, contributing to the search of cross border reproductive care (CBRC). The lack of international policy and norms on CBRC highlight the need for surveillance to ensure quality and equitable access to reproducti...

Background Decreasing fertility rates have spiralled a growth in demand for assisted reproduction technologies, including reproduction through donated gametes. Gamete donation is grounded on solidaristic practices traditionally focused on the gift of gametes. However, solidarity and reciprocity between donors and recipients may also be enacted thro...

Background: Using the couple as unit of analysis raises methodological challenges. This study aims to discuss the appropriate proxy to use in statistical analyses when couples provide discordant answers on the following couple-level variables: household monthly income and length of marital relationship. Methods: During 12 months (July 2013-June...

Este estudo pretende avaliar a qualidade da informação online sobre doação de gametas em sites de clínicas de fertilidade em Portugal. Todos os sites com informação sobre doação de gametas foram escrutinados em junho de 2017. A confiabilidade e usabilidade de 43 páginas web foram avaliadas usando o instrumento Website Information Evaluation do Offi...

Objectives: To explore needs of parents of very preterm infants hospitalised in Neonatal Intensive Care Units according to their socioeconomic position, obstetric history and infant's characteristics. Methodology: Sequential explanatory mixed methods study. Individual quantitative questionnaires (n = 118 mothers; 89 fathers) during infants' hosp...

Resumo: Analisou-se a autoavaliação da saúde bucal da população adulta brasileira segundo a posição socioeconômica (região de residência, escolaridade, renda e classe social), explorando as variáveis com maior sensibilidade para medir tal associação. Estudaram-se 59.758 indivíduos com 18 anos ou mais de idade, que participaram da Pesquisa Nacional...

Background: Forensic DNA testing is a powerful tool used to identify, convict, and exonerate individuals charged of criminal offenses, but there are different views on its benefits and risks. Knowledge about public views on forensic DNA testing applied in the criminal field is socially valuable to practitioners and policymakers. This paper aims to...

Objective To validate the Brazilian version of the Short Assessment of Health Literacy in Portuguese-speaking Adults (SAHLPA), a 50-item test proposed as a particularly helpful instrument to assess health literacy in people with limited skills, in the Portuguese population. Methods We used the standard procedure for cultural adaptation and adminis...

This presentation seeks to explore the role of sociological imagination in the context of research about gamete donation that builds on a multi-vocal approach grounded on the involvement of donors, recipients and health professionals, when occurring changes in the regulatory framework towards openness in donor conception and extension of access to...

Resumo: Conhecer a discussão em torno dos desafios sociais e éticos da doação de gametas é fundamental para a boa governança das técnicas de reprodução assistida. Neste artigo, analisam-se os tópicos que orientaram o debate nas organizações de ética portuguesas, discutindo as suas conexões com os temas abordados internacionalmente. Para tal, em mar...

Objective To explore the perceptions of the constraining and facilitating factors to patient‐centered communication in clinical encounters of patients with type 2 diabetes and the providers involved in their care. Data Sources/Study Setting Patients (n = 12) and providers (n = 33) involved in diabetes care in northern Portugal. Study Design Seven...

We aimed to evaluate the impact of two question wordings, one more directive (reference, European Social Survey ) and one less directive (modified version), on self-reported trust. Using a randomly equivalent groups design, young adults ( n = 1,681) from the EPITeen cohort completed one of two questionnaires to evaluate trust. The final score range...

Background: Knowledge about parental quality of life (QoL) is paramount to family-centred and integrated healthcare on prematurity, but evidence is limited. We aimed to explore mothers' and fathers' perspectives about their QoL 4 months after a very preterm childbirth. Methods: This is a cross-sectional mixed methods study using a convergent des...

Background Improvements in asthma integrated care might be achieved through in-depth knowledge about how health literacy is dispersed through a group. This study intends to map out health literacy mediators (those who makes his/her literacy skills available to others for them to accomplish specific literacy purposes) and how they enable self-manage...

Purpose: To synthesize the body of knowledge on the factors influencing the QoL of mothers and fathers of preterm infants. Methods: A scoping review was performed. Publications indexed in PubMed®, Web of Science™, CINAHL® and PsycINFO® were searched, targeting studies presenting original empirical data that examined parental perception on QoL af...

In the article “A short form of the neonatal intensive care unit family needs inventory”, published in J Pediatr (Rio J). 2016;92(1):73-80, please consider the following corrections: On page 75, on “Sample and recruitment” section, where it reads: “Among the 126 eligible couples, 122 (98.6%) agreed to participate”. It should read “Among the 126 eli...

Introduction: In Portugal, health literacy has started to be addressed through national policies, but research on the topic is still scarce. We aimed to estimate the prevalence and sociodemographic correlates of limited health literacy in Portugal using an existing health literacy instrument, the Newest Vital Sign. Materials and methods: Followi...

Study question: Do mode of conception [ART versus Natural (NC)] and depression have an interactive effect on antenatal paternal adjustment and paternal attitudes? Summary answer: Depression increased the negative effect of ART on antenatal paternal adjustment and paternal attitudes, specifically on antenatal marital relationship satisfaction. W...

Background Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can foster transformative change toward more responsive services a...

This study embraces a patient-centred and narrative-oriented notion of health literacy, exploring how social networks and personal experiences constitute distributed health literacy (DHL) by mapping out health literacy mediators of each individual and how they enable self-management skills and knowledge of health conditions. Semi-structured intervi...

This qualitative study analyzed couples’ perceptions about the factors that contextualize informed consent regarding embryo cryopreservation, through 34 semi-structured interviews, in Portugal. Data were analyzed according to the principles of grounded theory. The results revealed the following needs: timely provision of detailed, accurate and inte...

European regulations concerning the donation and distribution of human cells set out standards for appropriate technical and laboratory measures, scientific and organizational requirements, and the ethical principles that should guide donation (e.g. no payment, altruism, equity, transparency). Nevertheless, reproductive cells have been transformed i...

Most couples enrolled in Assisted Reproductive Technologies’ (ART) treatments need to make decisions regarding embryo disposition, as they are asked to sign a consent form about embryo donation for research. Beyond the current assessment of patients’ individual experiences and levels of satisfaction with care delivery, we argue that it is crucial t...

Cuidados centrados no paciente em PMA: da implementação à avaliação

Background: Successful human milk supply in neonatal intensive care units (NICUs) requires the development of family-centered services. Objective: This study aimed to assess parent perceptions of factors that help or hinder providing human milk to very preterm infants (VPI) in the NICU according to sociodemographic, reproductive, and obstetric c...

The scope of this article is to analyze the parental roles and needs included in Neonatal Intensive Care Unit guidelines. Thematic content analysis was conducted of 33 guidelines (28 consensuses and 5 documents directed to parents) freely available on the Portuguese Pediatrics Society website in August 2014. These documents deal mainly with informa...

Background Assessing parental stress during infants' hospitalization in Neonatal Intensive Care Units (NICU) is essential to identify parents at risk for immediate and extended physical and emotional burden. Aims To identify sources of stress in mothers and fathers of very preterm infants hospitalized in NICU, and their association with sociodemog...

There is increasing emphasis in making healthcare governance participatory. Pressure to develop more sustainable and quality healthcare systems and innovative technologies is calling upon the development of policies and services centred on patients' values, needs and preferences. As a result, efforts to implement patient-centred care have spurred t...

We examined the association between intergenerational educational trajectories and lower back pain (LBP) outcomes in young women and men from the general population. Participants were part of the 21 years old follow-up of the EPITeen cohort study, which was set up during the 2003/2004 school year and recruited subjects born in 1990 attending school...

Introduction: Decision-making on embryo disposition is a source of distress and is subject to change over time. This paper analyses in vitro fertilization couple's willingness to donate cryopreserved embryos for research from 15 days after embryo transfer to 12 months later, taking into account the influence of psychosocial, demographic and reprod...

The public’s understanding of forensic DNA databases remains undertheorized and few empirical studies have been produced. This article aims to address this omission by exploring the answers to an open-ended question taken from an online questionnaire regarding the reasons for individuals’ voluntarily accepting or refusing to allow their DNA profile...

Background: Cancer screening has contributed to downward trends in cancer mortality, but is also associated with adverse effects, which highlights the importance of promoting the participation based on informed decisions. Objectives: We aimed to describe the use of cancer screening (either in organized programmes or as opportunistic screening),...

Políticas centradas nas pessoas na doação de gâmetas: contributos do debate socioético

Between 2011 and 2012, 213 heterosexual couples undergoing fertility treatments in a Portuguese public fertility centre were systematically recruited to assess factors associated with willingness to donate embryos for research. Data were collected by questionnaire. Most couples (87.3%; 95% CI 82.1 to 91.5) were willing to donate embryos for researc...

OBJECTIVE: The identification of parental needs in Neonatal Intensive Care Units is essential to design and implement family-centered care. This article aims to validate the Neonatal Intensive Care Units Family Needs Inventory for the Portuguese population, and to propose a Short Form. METHODS: A linguistic adaptation of the Neonatal Intensive Car...

Parents’ perspectives regarding the hospitalization of preterm infants in the Neonatal Intensive Care Units (NICU) are essential to sustain both the design and the implementation of quality family-centred care. This literature review intended to synthesize the perspectives of parents of preterm infants regarding their experiences during infants’ ho...

The assessment of parental needs and stress is essential for the implementation of quality family-centred care in Neonatal Intensive Care Units (NICUs). Therefore, we aim to assess the effect of data collection period on self-reported needs and stress among parents of very preterm infants hospitalized in level III NICU, comparing those interviewed...

There is scarce knowledge about the influence of the professional group, education, and age on public perspectives on the risks and benefits of forensic DNA databases. Based on data collected through an online questionnaire applied to 628 individuals in Portugal, this research fills that gap. More than three quarters of the respondents believed tha...

The purpose of this study was to compare the sociodemographic and psychosocial characteristics reported by female in vitro fertilization (IVF) patients interviewed alone or with the partner in heterosexual couples. During 12 months (2011–2012), all patients undergoing IVF or intracytoplasmic sperm injection at one public reproductive medicine unit,...

Introduction: To compare the prevalence of breast milk supply, in the hospital setting, among families of very preterm infants and families of term infants, identifying the reasons for not breastfeed. Methods: A structured questionnaire was applied to 122 families of very preterm infants and hospitalized in all level III NICU located in Northern Po...

Purpose – The purpose of this paper is to compare user involvement in the case of assisted reproductive technologies in England and Portugal through the concepts of voice, choice and co-production, assessing the implications for user empowerment. Design/methodology/approach – This qualitative study draws primarily on policy review and uses explora...

The ethical aspects of biobanks and forensic DNA databases are often treated as separate issues. As a reflection of this, public participation, or the involvement of citizens in genetic databases, has been approached differently in the fields of forensics and medicine. This paper aims to cross the boundaries between medicine and forensics by explor...