Archives of Disease in Childhood - Fetal and Neonatal Edition, 2013
Objective To synthesise what is known about the parents' views on factors that help or hinder bre... more Objective To synthesise what is known about the parents' views on factors that help or hinder breast milk supply during their infants' hospitalisation in neonatal intensive care units (NICU). Methods A systematic search of PubMed, ISI WoK, PsycINFO and SciELO, targeting studies presenting original empirical data that examined parents' perspectives regarding breast milk supply experiences in NICU, was performed. Based on content analysis, three independent researchers synthesised the findings of seven studies. Categories of facilitators and barriers were identified using quotations stated in the studies: parents' breast milk supply experience; parents-professionals relationships; characteristics of the NICU; and parents' social background and expectations. Results The studies, five qualitative and two mixed methods, were published between 1994 and 2011. With heterogeneous study designs, fathers' perspectives were analysed in one article. Only one study defined breastfeeding. According to parents' perspectives, successful breast milk supply in NICU depends on coherent and accurate knowledge about its techniques and benefits, reinforcement of mothers' motivation and alignment between NICU's routines and parents' needs. Parents perceived issues related to their own current breast milk supply experience, simultaneously, as main facilitators and barriers. Parents-professionals relationship constituted the second group of facilitators, but the fourth of barriers. The characteristics of the NICU were more relevant as a barrier than as a facilitator. Conclusions Although parents' perspectives are grounded on individual child-focused experiences, their emphasis on learning and motivation guided by shortterm goals opens room to the collective intervention of experts. This may facilitate the engagement of mothers, fathers and health professionals on family-centred care.
Novas relações entre a genética e a sociedade, proporcionadas pelos crescentes usos da genética e... more Novas relações entre a genética e a sociedade, proporcionadas pelos crescentes usos da genética em contextos forenses, têm servido de mote a um debate científico, político, académico e social em torno dos potenciais benefícios, mas também das incertezas e inquietudes suscitados pela criação de bases de dados genéticos. Com base na hipótese de que as inovações científicas causam impactos sociais e, simultaneamente, potenciam a emergência de novas relações sociais, pretende-se neste texto interrogar a mútua interacção entre a genética forense e a sociedade. Considerando a construção social dos riscos e das incertezas inerente às práticas de aplicação forense da informação genética em vários países europeus, pretende-se discutir o projecto técnico-genéti-* As autoras agradecem à Fundação para a Ciência e a Tecnologia o apoio concedido no âmbito dos seguintes projectos de investigação: «Bases de dados genéticos com propósitos forenses em Portugal: percursos, actores e discursos», de Helena Machado (bolsa de pós--doutoramento SFRH/BPD/34143/2006 ); «Médicos, juristas e 'leigos': um estudo das representações sociais sobre a reprodução medicamente assistida», de Susana Silva (bolsa de doutoramento SFRH/BD/10396/2002).
To analyze users' reasons for choosing in vitro fertilization treatment in public or private serv... more To analyze users' reasons for choosing in vitro fertilization treatment in public or private services and to identify their suggestions for improving fertility treatment.
ABSTRACT Personalized and regenerative medicine capitalizes on genomics and hope in order to sust... more ABSTRACT Personalized and regenerative medicine capitalizes on genomics and hope in order to sustain public support to embryo research. This paper analyses the scientific issues explored on embryo research projects funded by the Foundation for Science and Technology between 2000 and 2009, based on the following criteria: year of application; scientific area; main contractor; participating institutions; allocated funding; and health issue studied. Funding was awarded for 34 embryo research projects, of which 65% were undertaken in health and biological sciences. The most studied health issues are concerned with phenomena and processes, anatomy and organisms. Embryo research uses human and public health as an argument to justify funding and the expectations regarding embryonic stem cell research and cell therapies.
The objective of this study was to assess the quality of the contents related to screening in a s... more The objective of this study was to assess the quality of the contents related to screening in a sample of websites providing information on breast and prostate cancer in the Portuguese language. The first 200 results of each cancer-specific Google search were considered. The accuracy of the screening contents was defined in accordance with the state of the art, and its readability was assessed. Most websites mentioned mammography as a method for breast cancer screening (80%), although only 28% referred to it as the only recommended method. Almost all websites mentioned PSA evaluation as a possible screening test, but correct information regarding its effectiveness was given in less than 10%. For both breast and prostate cancer screening contents, the potential for overdiagnosis and false positive results was seldom addressed, and the median readability index was approximately 70. There is ample margin for improving the quality of websites providing information on breast and prostate...
Archives of Disease in Childhood-fetal and Neonatal Edition, 2011
Place of birth has a role on labour and delivery. In Portugal, the WHO guidelines regarding paren... more Place of birth has a role on labour and delivery. In Portugal, the WHO guidelines regarding parents' choice of the place of birth coexists with an official hospital based public perinatal care system. This study aimed to assess the association of maternal demographic, social and obstetrical characteristics with the option for a place of birth outside the hospital catchment area,
This cross-sectional study intended to assess the use of prenatal care according to the family st... more This cross-sectional study intended to assess the use of prenatal care according to the family structure in a population with free universal access to prenatal care. In 2005-2006, the Portuguese birth cohort was assembled by the recruitment of puerperae at public maternity wards in Porto, Portugal. In the current analysis, 7,211 were included. Data on socio-demographic characteristics, obstetric history, and prenatal care were self-reported. Single mothers were considered as those whose household composition did not include a partner at delivery. Approximately 6% of the puerperae were single mothers. These women were more likely to have an unplanned pregnancy (OR = 6.30; 95%CI: 4.94-8.04), an inadequate prenatal care (OR = 2.30; 95%CI: 1.32-4.02), and to miss the ultrasound and the intake of folic acid supplements during the first trimester of pregnancy (OR = 1.71; 95%CI: 1.30-2.27; and OR = 1.67; 95%CI: 1.32-2.13, respectively). The adequacy and use of prenatal care was less frequent in single mothers. Educational interventions should reinforce the use and early initiation of prenatal care.
Background Reasonable disagreement about the role awarded to gamete donors in decision-making on ... more 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 perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients about who should take part in consent processes for the use of EGDs in research. Methods From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes (response rate: 76%). Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and ...
Increased concern regarding drug abuse among adolescents contributes to the elaboration of preven... more Increased concern regarding drug abuse among adolescents contributes to the elaboration of prevention programs at schools. This investigation aims to know teachers' social representations, regarding drug abuse, in a secondary school in Florianopolis, SC, Brazil. A total of 16 teachers of the 5th to 8th grades participated in the study. Data were collected through associations elaborated by teachers in response to the expression: drugs use/abuse. The teacher's representations are organized around a central concept - the vulnerable other: a needy adolescent, who becomes drugs user, highlighting the family, everyday coping, and the school's (in)visibility in prevention actions, as factors related. The complexity of factors involving drugs production, distribution and its commercialization, demands the implementation of actions that go beyond the scopes of education and health. The elaboration of inter-sector prevention programs considering local characteristics is necessary.
The assessment of parental needs and stress is essential for the implementation of quality family... more 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 8-14 days after child’s admission with those interviewed 15-22 days after that event. Between January and September 2013, parents filled the NICU Family Needs Inventory and the Parental Stress Scale in NICU. Needs of assurance and proximity were the most valued, independently of the time of interview. A tendency for attributing a higher relevance to support needs and to stress levels regarding change in parental role was observed throughout the hospitalization. Key-words: NeedS ASSeSSmeNt; StreSS, PSyChologICAl; PAreNtS; INteNSIve CAre UNItS, NeoNAtAl Ines Baia1,2, Elisabete Alves1, Mariana Amorim1,3, Silvia Fraga1, Susana Silva1 data de r...
ABSTRACT To assess the effect of data collection period on the self-reported parental needs and s... more ABSTRACT To assess the effect of data collection period on the self-reported parental needs and stress among mothers and fathers of very preterm infants hospitalised in Neonatal Intensive Care Units (NICU).
ABSTRACT To propose a Short Form of the Neonatal Intensive Care Unit (NICU) Family Needs Inventor... more ABSTRACT To propose a Short Form of the Neonatal Intensive Care Unit (NICU) Family Needs Inventory, through a cross-cultural adaptation for the Portuguese population.
A exigência de legalização e controle das novas formas de atuação a adotar no âmbito das aplicaçõ... more A exigência de legalização e controle das novas formas de atuação a adotar no âmbito das aplicações das tecnologias de reprodução assistida é potenciada, entre outros aspectos, pela percepção dos respectivos riscos e incertezas, diretos e indiretos, quer para a sociedade, quer para o indivíduo 1 .
Advantaged socioeconomic position (SEP) is associated with lower body image satisfaction (BIS) am... more Advantaged socioeconomic position (SEP) is associated with lower body image satisfaction (BIS) among women. However, motherhood and social trajectory (an individual's path from childhood SEP to adulthood SEP) could change this relationship. We aimed to assess the association between social trajectory and BIS immediately before getting pregnant in primiparous and multiparous mothers of a birth cohort. The birth cohort Generation XXI was assembled after delivery, in Porto, in 2005-2006. This analysis includes 5,470 women. Women's and their parents' education were used as indicators of adulthood and childhood SEP, respectively. Social trajectory was classified as stable-high, upward, stable-low, downward, according to both education variables. BIS was assessed with Stunkard silhouettes immediately after birth as the difference between perceived body size before the index pregnancy and ideal body size. Odds ratios (OR) between social trajectory and BIS were computed using mu...
Journal of Health Organization and Management, 2015
Purpose - The purpose of this paper is to compare user involvement in the case of assisted reprod... more 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 exploratory semi-structured interviews with key informants as a way of illustrating points. Data on the following themes was compared: voice (users' representativeness on licensing bodies and channels of communication between users and doctors); choice (funding and accessibility criteria; choice of fertility centres, doctors and level of care); and co-production (criteria through which users actively engage with health professionals in planning the treatment). Findings - Inter- and intra-healthcare systems variations between the two countries on choice and co-production were identified. Differences between funding and accessibility, regions, public and private sectors and attitudes towards doctor-patient relationship (paternalistic/partnership) were the key issues. Although consumer choice and indicators of co-production are evident in treatment pathways in both countries, user empowerment is not. This is limited by inequalities in accessibility criteria, dependence on doctors' individual perspectives and lack of genuine and formal hearing of citizens' voice. Originality/value - Enhancing users' involvement claims for individual and organizational cultures reflecting user-centred values. Effective ways to incorporate users' knowledge in shared decision making and co-design are needed to empower patients and to improve the delivery of care.
Archives of Disease in Childhood - Fetal and Neonatal Edition, 2013
Objective To synthesise what is known about the parents' views on factors that help or hinder bre... more Objective To synthesise what is known about the parents' views on factors that help or hinder breast milk supply during their infants' hospitalisation in neonatal intensive care units (NICU). Methods A systematic search of PubMed, ISI WoK, PsycINFO and SciELO, targeting studies presenting original empirical data that examined parents' perspectives regarding breast milk supply experiences in NICU, was performed. Based on content analysis, three independent researchers synthesised the findings of seven studies. Categories of facilitators and barriers were identified using quotations stated in the studies: parents' breast milk supply experience; parents-professionals relationships; characteristics of the NICU; and parents' social background and expectations. Results The studies, five qualitative and two mixed methods, were published between 1994 and 2011. With heterogeneous study designs, fathers' perspectives were analysed in one article. Only one study defined breastfeeding. According to parents' perspectives, successful breast milk supply in NICU depends on coherent and accurate knowledge about its techniques and benefits, reinforcement of mothers' motivation and alignment between NICU's routines and parents' needs. Parents perceived issues related to their own current breast milk supply experience, simultaneously, as main facilitators and barriers. Parents-professionals relationship constituted the second group of facilitators, but the fourth of barriers. The characteristics of the NICU were more relevant as a barrier than as a facilitator. Conclusions Although parents' perspectives are grounded on individual child-focused experiences, their emphasis on learning and motivation guided by shortterm goals opens room to the collective intervention of experts. This may facilitate the engagement of mothers, fathers and health professionals on family-centred care.
Novas relações entre a genética e a sociedade, proporcionadas pelos crescentes usos da genética e... more Novas relações entre a genética e a sociedade, proporcionadas pelos crescentes usos da genética em contextos forenses, têm servido de mote a um debate científico, político, académico e social em torno dos potenciais benefícios, mas também das incertezas e inquietudes suscitados pela criação de bases de dados genéticos. Com base na hipótese de que as inovações científicas causam impactos sociais e, simultaneamente, potenciam a emergência de novas relações sociais, pretende-se neste texto interrogar a mútua interacção entre a genética forense e a sociedade. Considerando a construção social dos riscos e das incertezas inerente às práticas de aplicação forense da informação genética em vários países europeus, pretende-se discutir o projecto técnico-genéti-* As autoras agradecem à Fundação para a Ciência e a Tecnologia o apoio concedido no âmbito dos seguintes projectos de investigação: «Bases de dados genéticos com propósitos forenses em Portugal: percursos, actores e discursos», de Helena Machado (bolsa de pós--doutoramento SFRH/BPD/34143/2006 ); «Médicos, juristas e 'leigos': um estudo das representações sociais sobre a reprodução medicamente assistida», de Susana Silva (bolsa de doutoramento SFRH/BD/10396/2002).
To analyze users' reasons for choosing in vitro fertilization treatment in public or private serv... more To analyze users' reasons for choosing in vitro fertilization treatment in public or private services and to identify their suggestions for improving fertility treatment.
ABSTRACT Personalized and regenerative medicine capitalizes on genomics and hope in order to sust... more ABSTRACT Personalized and regenerative medicine capitalizes on genomics and hope in order to sustain public support to embryo research. This paper analyses the scientific issues explored on embryo research projects funded by the Foundation for Science and Technology between 2000 and 2009, based on the following criteria: year of application; scientific area; main contractor; participating institutions; allocated funding; and health issue studied. Funding was awarded for 34 embryo research projects, of which 65% were undertaken in health and biological sciences. The most studied health issues are concerned with phenomena and processes, anatomy and organisms. Embryo research uses human and public health as an argument to justify funding and the expectations regarding embryonic stem cell research and cell therapies.
The objective of this study was to assess the quality of the contents related to screening in a s... more The objective of this study was to assess the quality of the contents related to screening in a sample of websites providing information on breast and prostate cancer in the Portuguese language. The first 200 results of each cancer-specific Google search were considered. The accuracy of the screening contents was defined in accordance with the state of the art, and its readability was assessed. Most websites mentioned mammography as a method for breast cancer screening (80%), although only 28% referred to it as the only recommended method. Almost all websites mentioned PSA evaluation as a possible screening test, but correct information regarding its effectiveness was given in less than 10%. For both breast and prostate cancer screening contents, the potential for overdiagnosis and false positive results was seldom addressed, and the median readability index was approximately 70. There is ample margin for improving the quality of websites providing information on breast and prostate...
Archives of Disease in Childhood-fetal and Neonatal Edition, 2011
Place of birth has a role on labour and delivery. In Portugal, the WHO guidelines regarding paren... more Place of birth has a role on labour and delivery. In Portugal, the WHO guidelines regarding parents' choice of the place of birth coexists with an official hospital based public perinatal care system. This study aimed to assess the association of maternal demographic, social and obstetrical characteristics with the option for a place of birth outside the hospital catchment area,
This cross-sectional study intended to assess the use of prenatal care according to the family st... more This cross-sectional study intended to assess the use of prenatal care according to the family structure in a population with free universal access to prenatal care. In 2005-2006, the Portuguese birth cohort was assembled by the recruitment of puerperae at public maternity wards in Porto, Portugal. In the current analysis, 7,211 were included. Data on socio-demographic characteristics, obstetric history, and prenatal care were self-reported. Single mothers were considered as those whose household composition did not include a partner at delivery. Approximately 6% of the puerperae were single mothers. These women were more likely to have an unplanned pregnancy (OR = 6.30; 95%CI: 4.94-8.04), an inadequate prenatal care (OR = 2.30; 95%CI: 1.32-4.02), and to miss the ultrasound and the intake of folic acid supplements during the first trimester of pregnancy (OR = 1.71; 95%CI: 1.30-2.27; and OR = 1.67; 95%CI: 1.32-2.13, respectively). The adequacy and use of prenatal care was less frequent in single mothers. Educational interventions should reinforce the use and early initiation of prenatal care.
Background Reasonable disagreement about the role awarded to gamete donors in decision-making on ... more 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 perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients about who should take part in consent processes for the use of EGDs in research. Methods From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes (response rate: 76%). Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and ...
Increased concern regarding drug abuse among adolescents contributes to the elaboration of preven... more Increased concern regarding drug abuse among adolescents contributes to the elaboration of prevention programs at schools. This investigation aims to know teachers' social representations, regarding drug abuse, in a secondary school in Florianopolis, SC, Brazil. A total of 16 teachers of the 5th to 8th grades participated in the study. Data were collected through associations elaborated by teachers in response to the expression: drugs use/abuse. The teacher's representations are organized around a central concept - the vulnerable other: a needy adolescent, who becomes drugs user, highlighting the family, everyday coping, and the school's (in)visibility in prevention actions, as factors related. The complexity of factors involving drugs production, distribution and its commercialization, demands the implementation of actions that go beyond the scopes of education and health. The elaboration of inter-sector prevention programs considering local characteristics is necessary.
The assessment of parental needs and stress is essential for the implementation of quality family... more 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 8-14 days after child’s admission with those interviewed 15-22 days after that event. Between January and September 2013, parents filled the NICU Family Needs Inventory and the Parental Stress Scale in NICU. Needs of assurance and proximity were the most valued, independently of the time of interview. A tendency for attributing a higher relevance to support needs and to stress levels regarding change in parental role was observed throughout the hospitalization. Key-words: NeedS ASSeSSmeNt; StreSS, PSyChologICAl; PAreNtS; INteNSIve CAre UNItS, NeoNAtAl Ines Baia1,2, Elisabete Alves1, Mariana Amorim1,3, Silvia Fraga1, Susana Silva1 data de r...
ABSTRACT To assess the effect of data collection period on the self-reported parental needs and s... more ABSTRACT To assess the effect of data collection period on the self-reported parental needs and stress among mothers and fathers of very preterm infants hospitalised in Neonatal Intensive Care Units (NICU).
ABSTRACT To propose a Short Form of the Neonatal Intensive Care Unit (NICU) Family Needs Inventor... more ABSTRACT To propose a Short Form of the Neonatal Intensive Care Unit (NICU) Family Needs Inventory, through a cross-cultural adaptation for the Portuguese population.
A exigência de legalização e controle das novas formas de atuação a adotar no âmbito das aplicaçõ... more A exigência de legalização e controle das novas formas de atuação a adotar no âmbito das aplicações das tecnologias de reprodução assistida é potenciada, entre outros aspectos, pela percepção dos respectivos riscos e incertezas, diretos e indiretos, quer para a sociedade, quer para o indivíduo 1 .
Advantaged socioeconomic position (SEP) is associated with lower body image satisfaction (BIS) am... more Advantaged socioeconomic position (SEP) is associated with lower body image satisfaction (BIS) among women. However, motherhood and social trajectory (an individual's path from childhood SEP to adulthood SEP) could change this relationship. We aimed to assess the association between social trajectory and BIS immediately before getting pregnant in primiparous and multiparous mothers of a birth cohort. The birth cohort Generation XXI was assembled after delivery, in Porto, in 2005-2006. This analysis includes 5,470 women. Women's and their parents' education were used as indicators of adulthood and childhood SEP, respectively. Social trajectory was classified as stable-high, upward, stable-low, downward, according to both education variables. BIS was assessed with Stunkard silhouettes immediately after birth as the difference between perceived body size before the index pregnancy and ideal body size. Odds ratios (OR) between social trajectory and BIS were computed using mu...
Journal of Health Organization and Management, 2015
Purpose - The purpose of this paper is to compare user involvement in the case of assisted reprod... more 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 exploratory semi-structured interviews with key informants as a way of illustrating points. Data on the following themes was compared: voice (users' representativeness on licensing bodies and channels of communication between users and doctors); choice (funding and accessibility criteria; choice of fertility centres, doctors and level of care); and co-production (criteria through which users actively engage with health professionals in planning the treatment). Findings - Inter- and intra-healthcare systems variations between the two countries on choice and co-production were identified. Differences between funding and accessibility, regions, public and private sectors and attitudes towards doctor-patient relationship (paternalistic/partnership) were the key issues. Although consumer choice and indicators of co-production are evident in treatment pathways in both countries, user empowerment is not. This is limited by inequalities in accessibility criteria, dependence on doctors' individual perspectives and lack of genuine and formal hearing of citizens' voice. Originality/value - Enhancing users' involvement claims for individual and organizational cultures reflecting user-centred values. Effective ways to incorporate users' knowledge in shared decision making and co-design are needed to empower patients and to improve the delivery of care.
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