The websites of in-vitro fertilization (IVF) clinics have become privileged vehicles for search and provision of information by gamete donors and recipients seeking for fertility treatments with donated eggs and sperm, as well as relevant sources of psychosocial support for patients. The importance of ensuring quality of health information made available online to the public is consensually recognized, and there are different instruments to assess the formal quality of health-related websites. However, such instruments are only based on quantitative approaches and do not evaluate the accuracy of the information on specific topics.info:eu-repo/semantics/publishedVersio

Baía, I.

Freitas, C. DE

Samorinha, C.

Silva, S.

English

Repositório Institucional do ISCTE-IUL

 Repositório ISCTE-IUL Deposited in Repositório ISCTE-IUL:2019-02-26 Deposited version:Publisher Version Peer-review status of attached file:Peer-reviewed Citation for published item:Samorinha, C., Baía, I., Freitas, C. DE & Silva, S. (2018). Contents about gamete donation on IVFclinics websites: how to assure that the information provided meets people’s needs? . In EuropeanCongress of Qualitative Inquiry. (pp. 108-109). Leuven Further information on publisher's website:https://kuleuvencongres.be/ECQI2018 Publisher's copyright statement:This is the peer reviewed version of the following article: Samorinha, C., Baía, I., Freitas, C. DE &Silva, S. (2018). Contents about gamete donation on IVF clinics websites: how to assure that theinformation provided meets people’s needs? . In European Congress of Qualitative Inquiry. (pp. 108-109). Leuven. This article may be used for non-commercial purposes in accordance with thePublisher's Terms and Conditions for self-archiving.Use policyCreative Commons CC BY 4.0The full-text may be used and/or reproduced, and given to third parties in any format or medium, without prior permission orcharge, for personal research or study, educational, or not-for-profit purposes provided that:• a full bibliographic reference is made to the original source• a link is made to the metadata record in the Repository• the full-text is not changed in any wayThe full-text must not be sold in any format or medium without the formal permission of the copyright holders.Serviços de Informação e Documentação, Instituto Universitário de Lisboa (ISCTE-IUL)Av. das Forças Armadas, Edifício II, 1649-026 Lisboa PortugalPhone: +(351) 217 903 024 | e-mail: administrador.repositorio@iscte-iul.pthttps://repositorio.iscte-iul.ptEuropean Congress of Qualitative Inquiry – February 6-9, 2018 // Leuven, Belgium 108 gamete donors must occur in the hospital, some interviews and questionnaires were applied in a hospital room also used for sperm collection. The room was usually very cold, the walls are white with only one spermatozoon drawn on it and one red single couch at the corner of the room. Female researchers felt disconcerted with having to apply the questionnaires or interviews in that room right after the male participants had collected the sperm in the same space. Female researchers had to deal with their own discomfort, as well as with the participants’ discomfort. To avoid these situations, the room was only used as a last resource. Secondly, when applying structured questionnaires (equal for donors and recipients), researchers were unexpectedly confronted with a man, member of a heterosexual couple diagnosed with female infertility, who did not perceive himself as a recipient, but as a sperm donor for his wife, when answering to the question “What’s you currently relation to gamete donation? a) I am a donor b) I am a recipient”. Afterwards, we restructured the options for this specific question by “a) I am a donor, b) I am a member of a recipient couple; c) I am a recipient, but I don’t belong to any couple”.  Unexpected challenges resulting from our fieldwork uncovered issues of gender and ethics in mixed-methods research in a health setting such as a public bank of gametes. These should be acknowledged and discussed by the scientific community. Reflexivity around these ethically important moments and methodological challenges and how they can be overcome should be promoted to enrich the development of innovative study designs and protocols, anticipating future challenges that may arise in research about sensitive and complex phenomena in the field of health.  What constitutes parenthood according to (aspiring) parents of children born after gamete donation? The use of elicitation techniques to collect data on moral reasoning. Provoost, Veerle (Bioethics Institute Ghent, Ghent University, Belgium);   Medical developments in the reproductive field have enabled a disconnection between genetic, gestational and social ties. In the literature, many divergent moral grounds for parenthood have been suggested, for instance causal, intentional or genetic grounds. The aim of the study was to find out what stakeholders consider to be relevant concepts and criteria that can be used to determine parenthood.  We used semi-structured qualitative interviews with 75 individuals, mostly lesbian or heterosexual couples, 7-10 years after successful insemination using (known-)anonymous donor gametes or around the start of their treatment. Participants’ views and moral reasoning regarding the grounds for parenthood was explored among other things by using a thought-provoking hypothetical scenario presenting three protagonists that apply for the parenthood status based on different links to the same child.  Overall, the participants demonstrated a reflective attitude, questioning their own and each other (in couple interviews) views in a respectful way. Many criteria for parenthood were used in ways that appeared entwined. Despite the fact that all couples had one partner who did not share a genetic link with their (future) child, this link was considered an important element: something which a genetic parent had as a plus and a non-genetic parent ‘lost’. However, the weight attached to this the genetic link varied and the impact to the status of parent remained difficult to determine. Interestingly, some participants dismissed the social parent pictured in the scenario as a real parent based on this person’s lack of a genetic link, despite being in the same situation in relation to their own child.  Overall, the participants’ views on the grounds for parenthood appeared to be fragmented, meaning that, in this study, the three protagonists in the scenario could receive the status of parent based on a variety of grounds and relationships to the child. Mostly a complex pluralistic account was used, one that contained many criteria. Criteria were considered as necessary and/or sufficient, or were used either alone or in combination with other criteria with specific combinations leading to specific outcomes. Criteria could be grounds both for parenthood and no parenthood. The pluralistic account presented by the participants differed from the ones presented in literature: in our study, the participants’ accounts involved more complex combinations of criteria and included considerably more criteria than mentioned in the literature. The findings of the project were interesting both for use in practice (for fertility counselling) as well as for theory (the theoretical debate about the significance of the genetic link between parents and children). Furthermore, the study offers insight into how data can be collected on moral experiences, moral reasoning and decision-making. In this presentation, we will also go into the features of this particular way of collecting interview data and the methodological questions relating to the use of interviewing techniques such as elicitation of moral reasoning. Finding suitable methods to collect data on moral reasoning is one of the main challenges related to qualitative research in moral science.  Contents about gamete donation on IVF clinics websites: how to assure that the information provided meets people’s needs? Samorina, Catarina (EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Portugal); Baía, Inês (EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Portugal); de Freitas, Cláudia (ISPUP-EPIUnit, Universidade do Porto; Centre for Research and Studies in Sociology, University Institute of Lisbon (ISCTE-IUL), Portugal.); Silva, Susana (EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Portugal);  European Congress of Qualitative Inquiry – February 6-9, 2018 // Leuven, Belgium 109  The websites of in-vitro fertilization (IVF) clinics have become privileged vehicles for search and provision of information by gamete donors and recipients seeking for fertility  treatments with donated eggs and sperm, as well as relevant sources of psychosocial support for patients. The importance of ensuring quality of health information made available online to the public is consensually recognized, and there are different instruments to assess the formal quality of health-related websites. However, such instruments are only based on quantitative approaches and do not evaluate the accuracy of the information on specific topics. Moreover, their conceptualization and operationalization have been primarily based on expert views, which does not guarantee that their evaluation and the contents provided effectively meet people's needs. Aiming to strengthen the evidence base for quality assessment of IVF clinics websites, we developed a qualitative study to obtain information about the adequacy of the contents related with gamete donation to people’s needs. This communication seeks to discuss three main methodological challenges we faced during the design of the research protocol, associated with selecting a sampling strategy, the techniques for data collection and a topic guide. First, the participants in the study: who should we interview (e.g. representatives of patient organisations, representatives of national registries on assisted reproductive technologies (ART), and policy making institutes)? How to include (open and anonymous) gamete donors? Second, the methodologies facilitating the involvement of these stakeholders in knowledge co-production: is a joint Delphi panel the most suitable option or should we use different methodological strategies for different groups? Is there a need for individual and group interviews, and how to combine them? Third, the topic guide: should it consider, simultaneously, questions about the contents to be included in the website (for example, information about risks and benefits of gamete donation; accuracy and robustness of the information about success rates, costs, and donor’s anonymity; circumstances under which IVF-clinics recruit and select donors and match donor-recipient; protection of personal data), and those that should not be presented in websites (for example, suggestive overestimation of success, problematization of families or family relationships after using ART)? We call for the development of a culturally sensitive instrument to assess the quality of IVF clinics websites that takes into account people’s needs, national regulatory frameworks and health policies, as well as local, cultural, socioeconomic and clinical dimensions of reproductive medicine.  Interviewing parental couples together: Interaction between gender and occupation beyond child’s birth weight Amorim, Mariana (EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Portugal); Alves, Elisabete (EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Portugal); de Freitas, Cláudia (ISPUP-EPIUnit, Universidade do Porto; Centre for Research and Studies in Sociology, University Institute of Lisbon (ISCTE-IUL), Portugal.); Samorinha, Catarina (EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Portugal); Silva, Susana (EPIUnit – Instituto de Saúde Pública, Universidade do Porto, Portugal);   Challenging the under-representation of fathers in the literature about parenthood in sociotechnical environments, recent health studies have resorted more often to couple interviews. Undertaking qualitative health-related research with heterosexual couples raises several ethical and methodological challenges regarding data collection and analysis. However, there is a scarcity of both population-specific guidelines and literature grounded on researchers’ experiences in this field.  This study contributes to advance innovative study designs and protocols to investigate parental roles and knowledge in Neonatal Intensive Care Units (NICU) by discussing the influence of gender, occupation and child’s birth weight in parents’ narratives in joint couple interviews. Twenty-seven semi-structured couple interviews with mothers and fathers of very preterm infants were conducted 4 months after delivery (November 2013 - July 2014). The interview schedule included the following topics: quality of life; uncertainty, doubts and decisions about parental care and treatment options; information and communication; and social support.  Heterogeneity sampling was used to obtain maximum variation of views and experiences until reaching thematic saturation. Interviewees were purposively sampled to include parents of extremely low (<1000g) and non-extremely low (≥1000g) birth weight infants. Although health professionals suggested a replacement of infant’s birth weight by gestational age as the main criteria to be used for sampling, invoking evidence-based knowledge produced in the field of health sciences, the researchers opted for grounding their decision regarding sampling criteria on empirical evidence obtained through an ethnographic study at the NICU, which showed that parents interpret infant’s birth weight as the best proxy for the degree of their infant’s vulnerability. However, content analysis showed that father’s occupation was the main variable influencing the following emergent couples’ narratives: 1) ‘emotionally-driven narrative’, enacted by fathers employed as health or teaching professionals, who talked about their experiences in depth, sharing an intense emotional repertoire with mothers; 2) ‘control-need narrative’, enacted by fathers working in business, civil construction or armed forces, who tended to control the interview, both by leading the couple’s narrative and questioning the study aims and its implications for clinical practice; and 3) ‘emotionally-silenced narrative’, enacted by fathers working in artisanal or skilled manual jobs and clerical support, who tended to silence their intimate experiences and emotions. The influence of occupation was buffered in mother’s narratives. Mothers tended to provide detailed answers and 

Contents about gamete donation on IVF clinics websites: how to assure that the information provided meets people’s needs?

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Contents about gamete donation on IVF clinics websites: how to assure that the information provided meets people’s needs?

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