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- Burden of disease as a tool for policymaking in Europe : baseline assessment and applicationsPublication . Chen Xu, José; Viegas, Susana; Varga, OrsolyaABSTRACT - Introduction: In the past decades, Europe has achieved substantial progress in the prevention and treatment of chronic diseases, however, it is evident that the impact is still considerable. Efforts have been made on the European Union (EU) level to improve legislation. Despite this, only recently with the COVID-19 pandemic, public health policies have gained some focus on a European level. Objectives: This study aimed at understanding the impact of burden of disease (BoD) studies in defining European public policy. This was achieved by assessing the current use of burden of disease metrics in the European policymaking, and by illustrating the usefulness of burden of disease metrics in EU public policies. Methodology: A systematic research was conducted on BoD studies that address potential impacts on EU legislation, with a concomitant policy analysis performed on the existing legislation. This was followed by two burden of disease studies assessing specific inequalities in European countries: one in occupational health, and another on socioeconomic and geographical inequalities. Data were collected via analysis of institutional data, in Eurostat and BoD studies, as well as EUR-LEX. Medline, Embase, Web of Science, Scopus, Cochrane and Science Direct were searched for the systematic review. Variables related to population, deaths, educational attainment, household income, and poverty risk were collected. An economic analysis was conducted for the occupational health case, whereas a Negative Binomial Regression analysis was carried out for the second study. Results: The number of BoD studies that considered EU legislation has increased over time, as well as the number of EU legislation which considers BoD metrics, even though these only include 10 legally binding documents over the past 20 years. These mainly cover environment, agriculture, and health and food safety. The BoD studies conducted show the relevance of the metric throughout the policy cycle, from policy formulation to evaluation, and in the different fields studied, including risk factors and socioeconomic inequalities. Conclusions: The burden of disease methodology has increased substantially and has been used more consistently across time. Specific burden of disease studies allow providing an overall picture of the health and economic burden, showcasing different research contributions to the policy process in different fields. However, there is a need for academia to improve evidence translation for policymaking. Increasing recommendations towards policymaking in research will allow decision makers to adopt evidence-informed policies.
- Antimicrobial resistance and zoonotic bacteria: assessing interventions, risk factors and the occurrence of antimicrobial resistance in the food chain production in PortugalPublication . Costa, Miguel Mendes da; Leite, Andreia; d'Anjo, Maria CaraABSTRACT - Background: Resistant microorganisms that spread in the food system are a major threat to animal health and public health since they are a potential pathway of transmission to humans. This thesis evaluates: (i) antimicrobial resistance (AMR) prevalence and associated risk factors in the Portuguese food system (ii) effectiveness of interventions designed to reduce and adequate antimicrobial usage in animal production and tackle AMR. Methods: Portuguese AMR surveillance program on animals and food products data, 2014-2019, were used to estimate prevalence of AMR in Escherichia coli, Campylobacter and Salmonella samples, factors associated with Salmonella resistance, and AMR profiles. Logistic regression and clustering methods were applied. Effectiveness was assessed in a systematic review with meta-analysis. Articles were identified on PubMedTM, ScopusTM, The Cochrane LibraryTM, Web of ScienceTM, and grey literature on DANS EASYTM, WorldCatTM, RCAAPTM. Effectiveness was estimated by intervention, bacterial species, production type and population through fixed and random-effects models. Results: High prevalence of Salmonella resistance was observed, especially during summer and in post farm-stages to most antimicrobials and in summer and farms to fluoroquinolones and quinolones-F(Q). Salmonella F(Q) resistance was associated with broilers. Clusters suggested an escalating multi-drug resistance (MDR) behavior from farm to post-farm stages. Our review indicates that organic and antimicrobial-free farms, and group treatment restrictions lead to AMR reduction. Conclusions: Further attention is needed in the Portuguese food system regarding AMR behavior in particular in post-farm stages due to the potential source of MDR bacteria. Our findings support policy- and decision-making on effective interventions to reduce AMR.
- Cervical cancer screening among migrant women in PortugalPublication . Marques, Patrícia Sofia de Melo; Dias, Sónia; Heleno, BrunoABSTRACT - Background: Cervical cancer is one of the most common female cancers worldwide, with a high mortality rate, despite being preventable and treatable. Cervical cancer screening has been shown to be highly effective in reducing disease-specific mortality. However, inequities in participation in screening persist, particularly among migrant women. Understanding why these women have low screening attendance is essential to increase their participation. Considering that Portugal has important migrant populations from countries with a high incidence of cervical cancer, this thesis aims to explore factors related to cervical cancer screening participation among migrant women living in Portugal. Methods: Firstly, a scoping review was conducted to summarize scientific evidence on the factors influencing cervical cancer screening participation among migrant women EU/EFTA countries. Then, a web-based survey targeting migrant women living in Portugal was conducted to estimate women’s screening attendance and to explore factors associated with non-attendance. Finally, the perspectives and experiences of healthcare and community workers on the screening participation among migrant women were explored through focus groups discussions. Results: Like in other European countries, migrant women living in Portugal have a low cervical cancer screening participation (around 25% were non-attenders). Lack of knowledge about screening and difficulties in accessing healthcare services are the factors most associated with lower participation, according to the focus groups with healthcare and community workers and the survey of migrant women. Data from the qualitative and quantitative studies both suggest that women should be provided with adequate information to make the informed decision to participate in screening, and healthcare services need to be able to provide culturally and linguistically adapted care to meet these women’s needs and overcome some of the barriers identified. Conclusions: Migrant women face several challenges when accessing cervical cancer screening. It is important to implement a culturally sensitive migrant friendly healthcare system, able to deliver the care needed by these women but also able to provide to healthcare workers with the necessary competencies to deliver appropriate care to them. Establishing partnerships with other relevant stakeholders, such as community workers who work closely with these populations, to collaborate in interventions to increase health literacy and promote screening, could be key to promoting cervical cancer screening among migrant women.
- Essays on gender-based health inequalities: women’s morbidity disadvantage and gendered help-seeking behavioursPublication . Roxo, Luis Filipe de Almeida; Perelman, Julian; Dias, SóniaABSTRACT - Background: Gender-based health inequalities are characterized by a paradox, in which men live shorter but women report worse health and greater morbidity. Although the women’s disadvantage extends to common mental disorders, the treatment gap for depression is higher among men. In this dissertation we extend previous knowledge by investigating the recent patterns of women’s morbidity disadvantage and its determinants, and the gendered differences in health service utilization, focusing the case of depression. Methods: We use multi- and single-country data and multivariate statistical methods: to longitudinally assess the evolution of gender inequalities in self-reported health in 27 European countries, between 2004 and 2016, and the association with measures of societal gender equality; to assess the association between job characteristics (part-time, occupational status, job instability) and self-reported health and depression of employed mothers in Portugal (coupled and lone); to assess gender differences in health service utilization for depression among middle-aged and older adults, using cross-sectional and longitudinal data; and to assess the association between gender and barriers for depression treatment (unrecognized need and affordability concerns). Results: Women are 17% more likely to report bad health than men, but this disadvantage ceases to exist after adjusting for education and employment status. Women’s disadvantage has not significantly decreased since 2004, in general or within subgroups. Gender inequalities were larger among countries with greater Gender Equality Index and among low-educated persons. Among employed mothers, working part-time is associated with depression (among coupled and lone mothers) and poor health (only among coupled mothers). Coupled mothers with a high-skill job are more likely to be depressed, but, among lone mothers, we noticed an inverse association between the two variables. Depressed men are less likely than women to use health services, and this difference is higher among the longitudinal sample (suggesting previous underestimation of the gender gap in cross-sectional studies). The gender gap is larger among those with low education and less financial strain. Among those using services, men seem more likely to remain depressed. Depressed men are more likely to report they do not need services, and that they cannot pay for mental health services. This difference persists after adjustments for education, income quintile, severity of symptoms, and health insurance. vi Conclusion: Findings show the persistence of women’s disadvantage in morbidity and its socioeconomic determinants, while gendered family arrangements may compromise the health of coupled employed mothers. By contrast, masculinity norms seem to impact men’s help-seeking behaviours for depressive symptoms and their engagement with treatments. Public policies should tackle the overrepresentation of women among groups with lower social resources and promote reconciliation between work and family, while gender-sensitive health services may improve mental health outcomes among men.
- Challenges for community mental health care: assessing the experience of family caregivers of persons with severe mental illnesses in the Lisbon Metropolitan AreaPublication . Szabzon, Felipe; Abrantes, Alexandre; Rechtman, RichardABSTRACT - Background: There has been a global call for the modernization of models of mental health service provision reinforcing that care should be mostly provided at the community level. A consequence of this shift refers to its implication to family members of community-dwelling persons with mental disorders that are becoming increasingly involved in caregiving. Although care research is frequently employed to assess the quality-of-service provision, the lived experiences of caregivers are rarely interpreted within a socio-cultural framework. This mismatch can make it difficult to understand specific aspects that must be addressed by services and practitioners to strengthen mental health systems. Aims: The main goal of this thesis was to explore the main challenges faced by psychosocial services to support family caregivers of persons with severe mental illnesses and to understand how do family members experience caregiving for their relatives at the community level. Methods: An overarching qualitative framework was upheld, although different methodological approaches were used. Firstly, a scoping review was performed integrating care research in the social sciences and mental health fields. Secondly, a historical contextualization of the Portuguese case was undertaken. Finally, three empirical studies employed semi-structured interviews with managers of psychosocial services, a cross-sectional survey with family caregivers and participant observations in peer-support groups of family members. Results: Historical contextualization suggests a periodization beginning in the New State when the first national mental health law was established and concluding in 2016 with the latest mental health plan that has aimed at scaling-up communitarian services. Empirical findings show that, at the end of this process, asymmetries in the provision of psychosocial rehabilitation is still a prominent issue within the Lisbon Metropolitan Area and that concerns with the sustainability of long-term care is still a pressing issue, either from the perspective of service managers and family caregivers. Three circumstances emerged in the participant observation and can contribute to better understand the lived experiences of family members. These refer to the moral responsibility of caregiving, challenges for meeting needs for care and worries related to an uncertain future. Conclusions: The ensemble of these findings points to three main implications for clinical practice and public policy development. First, policymakers should develop services and support family members to promote future care planning. Second, practitioners must support family members to cope with caring responsibilities and to overcome the contingencies of caregiving in the community. Finally, there must be a concerted action from policymakers, services, and practitioners to fight persistent and structural inequalities.
- Hospitalizations for ambulatory care-sensitive conditions in Brazil and Portugal: a comparative studyPublication . Rocha, João Victor Muniz; Santana, Rui; Willner, SamABSTRACT - Background: Ambulatory Care Sensitive Conditions (ACSC) are health conditions for which adequate management, treatment and interventions delivered in outpatient setting could avoid the need of hospital admission. Hospitalizations for ACSC have been used to assess access, quality, and performance of the Primary Health Care (PHC). Portugal and Brazil have carried out reforms in their PHC delivery system in the last years, with similar organizational characteristics and objectives. While inter-country comparison provides opportunities for cross-country learning, ACSC have limitations as an indicator for quality of care. The aim of this thesis was to analyze the dynamics of hospitalizations for Ambulatory Care Sensitive Conditions in Brazil and Portugal. Methods: Firstly, a literature review was conducted to identify the conceptual, methodological, contextual and policy dimensions and factors that need to be accounted for when comparing hospitalizations for ACSC across countries. Secondly, hospitalizations for ACSC in Brazil and Portugal were compared in the dimensions of occurrence, rates, causes, sociodemographic characteristics, costs of hospitalizations and economic impact, geographic distribution and variations, and identification of spatial clusters. The data for this comparison was obtained from administrative databases of all hospitalizations in public hospital in each country for the year 2015. ACSC were classified according to the methodology by the Agency for Healthcare Research and Quality. Thirdly, a longitudinal analysis was carried out to investigate if expansion of PHC reform in Brazil and Portugal (using coverage of Family Health Units as proxy) was associated to hospitalizations for ACSC. This analysis was conducted for the period 2007 and 2016 using the same administrative databases, and possible associations analyzed using Spearman’s correlation analysis, Kruskal-Wallis tests, and linear regressions. Results: The inter-country comparison of hospitalizations for ACSC can suggest health policy implications and potential points of improvements to reduce these events; however there are factors in the dimension of methods, population and health system that need to be accounted for. Hospitalizations for ACSC accounted for around 7 and 10% of all hospitalizations in Brazil and Portugal in 2015, respectively. Both countries have similarities in standardized rates and which conditions were more common, and differences in crude rates and age distribution. Each hospitalization for ACSC had an estimated cost of US$ PPP 1,919 and 4,278 in Brazil and Portugal, respectively. Both countries presented expressive geographic variations in rates of hospitalizations for ACSC. These indicate room of ix improvement and efficiency gains in Brazil and Portugal. Rates of hospitalizations for ACSC between 2007 and 2016 decreased in Brazil and increased in Portugal; although there were indications that expansion of PHC reform may be associated to reductions in ACSC hospitalizations, these results only applied for specific conditions and geographic areas within each country, and for some conditions results were discordant between the two countries. Conclusions: It is important to reduce ACSC hospitalizations given the impact these events represent for health systems and for society. The existing literature on inter-country comparison of hospitalizations for ACSC agree that strengthening PHC and promoting access provides opportunities to reduce these events. There was no robust evidence of the association between expansion of PHC reforms in Brazil and Portugal and reduction of hospitalizations for ACSC, indicating that the PHC reforms did not produce the same results neither within or between countries and not for all conditions. Findings indicate that focused actions can be more effective to reduce such events, with examples in both countries serving as valuable clues for the learning process and improvement.
- Functional disability among middle-aged and elderly Europeans: socioeconomic patterning, burden and policiesPublication . Alarcón, Manuel Serrano; Perelman, JulianABSTRACT- The share of elderly population is increasing across all high-income countries. As long as such increase is not offset by improving in the health status and functional disability of older adults, there will be grave consequences for healthcare and welfare systems. The objective of this thesis is twofold: First, to determine what are the socioeconomic factors associated with the onset of functional disability and what is the associated burden for families and the healthcare system. Second, to evaluate the effectiveness of a set of policies that may prevent or mitigate the burden of functional disability either on individuals, families or in the countries’ healthcare systems. We found that functional disability is unequally distributed and hits earlier women and those with a lower socioeconomic status in terms of education and economic resources. This implies a higher burden for families through informal care that might amplify existing social inequalities. Additionally, functional disability imposes a burden on healthcare system that may be reduced through policies that aim to tackle the existing health inequalities. One such a policy may be tobacco control policies. We found that tobacco control policies, in particular tax increases and smoke-free policies, have reduced smoking prevalence among the middle-aged and older Europeans, especially among the lowest educated. Therefore, they can decrease inequalities in smoking-related diseases and subsequently in functional disability. They would also reduce the disability burden for low socioeconomic status families since quitting at old ages can still bring significantly health gains. We also found that an unemployment subsidy targeted to middle-aged disadvantaged workers who find strong difficulties to return to the labour market have positive effects in terms of mental health and hospitalizations related to work. This shows that some social policies whose primary objective is not related with health can have significant health effects, notably on the worse-off. Lastly, we analyse how an incipient long-term care system in a relatively aged country, Spain, can help to mitigate the burden that increasing functional disability imposes on the healthcare systems. Results show how public long-term care system strongly interacts with the healthcare system, giving room to increase the efficiency in the allocation of resources between the two systems. In particular, results show that long-term care benefits can reduce the non-scheduled use of healthcare services by disabled older adults, potentially saving healthcare resources. In conclusion, the process and burden of disability in Europe is unequally distributed, affecting earlier and more severely to those socioeconomically disadvantaged. However, there are health and social policies that may decrease the social gap in disability and ease its burden on the healthcare system.
- Multidimensional social exclusion and immigrants’ health in EuropePublication . Uriona, Ana Maria Fernanda Arias; Perelman, Julian; Willner, SamABSTRACT - Background: Immigrants’ lives are shaped by the Social Determinants of Health (SDOH) along with the migratory phases. The SDOH are the social, economic and environmental conditions in which people are born, grow, live, work and age that influence the health of individuals and populations. Immigrants are more vulnerable to social exclusion (SE) as they suffer from certain types of discrimination, higher levels of unemployment, precarious jobs, deepening levels of poverty, differential access to housing, and limited political and social participation; being all of these factors SDOH themselves. Even though migration is an emerging and increasing social, political and public health issue, very few studies applied the lens of SDOH to understand immigrants’ experiences in Europe. Also, the empirical evidence on social exclusion is still scarce. Aim: To examine the association between independent and overall dimensions of social exclusion and poor self-rated health (PSRH) and self-reported depressive symptoms (SRDS) in the immigrant population in Europe. Also, to analyze inequalities in SRDS between natives and immigrant groups according to their length of residence in Europe, and to test the mediating role of SE in explaining these differences. Objectives: The thesis comprises four studies. In Study I (Chapter 3), the objective was to summarize existing literature on the relationship between SE and health outcomes in the immigrant population in Europe. In Study II (Chapter 5), the objective was to analyze inequalities in SRDS between natives and immigrant groups according to their length of residence in Europe and to test the mediating role of SE in explaining these differences. In Study III (Chapter 6), the objective was to examine the association between independent and overall dimensions of SE and SRDS in the immigrant population in Europe; stratifying the analysis by sex. Finally, in Study IV (Chapter 7), the objective was to analyze the association between multidimensional SE and PSRH in the immigrant population in Europe. Methods: In Study I, a scoping review was conducted and quantitative articles that analyzed SE as a multidimensional concept but also in each of its dimensions, were included. Study II was based on cross-sectional data from the 7th round of the European Social Survey 2014 (sample of 1792 Immigrants and 22557 native-born Europeans). The dependent variable was SRDS. Independent variables were: immigrant background and social exclusion factors that were classified into four groups (economic, social, cultural and political factors). Socially excluded individuals were those less advantaged in each factor. All analyses were stratified by the length of residence. The independent and overall associations between SE and health outcomes were examined using Robust Poisson regression models (PR; OR; IC 95%). Study III was based on cross-sectional, including 1816 economically active immigrants (European Social Survey, 2014). The dependent variable was SRDS. The independent variables were economic, social, cultural, and political SE factors. The association between SE factors and SRDS were tested by robust Poisson regression models (PR; OR; IC 95%). Study IV used cross-sectional data, including 1268 economically active immigrants (European Quality of Life Survey 2016). The dependent variable was PSRH . The independent variables were economic, social, cultural, and political SE factors. The association between SE factors and PSRH were tested by robust Poisson regression models (PR; OR; IC 95%). Results: In Study I, a total of nine studies, analyzed the multidimensionality SE and its association with health outcomes among the immigrant population in Europe. Besides, 26 studies analyzed factors related to the social, economic and cultural dimensions of SE and their associations with immigrants’ health. Interactions were found between the economic, cultural and social factors in their associations with poor mental health and mental health. Other studies, analyzed structural indicators of SE based on country level integration policies. This review also found that SE factors such as material deprivation, precarious working conditions, discrimination, and low social support were associated with immigrants’ poor mental and self-rated health. In Study II, immigrants had a higher prevalence of SRDS than natives; those residing in Europe for 1-10 years and ≥20 years had the highest prevalence. In the mediation regression analysis, immigrants residing in Europe for 1-10 years and ≥20 years were eligible for mediation because of their significant associations (PR:1.36; 95%CI: 1,20-1,53 for 1-10 years and PR: 1,44; 95%CI: 1,30-1,60 for >20 years). Multidimensional SE factors analyzed together completely explained these differences for immigrants residing in Europe for 1-10 years (PR: 1,09; CI: 0,96-1,23) and partially for immigrants residing for ≥20 years (PR: 1,23; CI: 1,11-1,36). In Study III, women had higher prevalences of SRDS than men (38.8% vs 26.4%). In women, those who found it difficult to live with household income (PR: 1.08; CI:1.01-1.13), who faced housing problems (PR: 1.09; CI:1.01-1.17), were unemployed (PR:1.20; CI:1.08-1.34), had low institutional trust (PR: 1.09; CI:1.02-1.17), who did not have citizenship (PR: 1.12; CI: 1.04-1.20), and with ≥20 years of residence (PR: 1.12; CI:1.02-1.26) were more likely to report SRDS. In men, those who found it difficult to live with household income (PR: 1.21; CI: 1.12-1.30), faced housing problems (PR: 1.08; CI: 1.02-1.17), and were economically inactive ( PR: 1.21; CI: 1.10-1.32) were more likely to report SRDS. In Study IV, about 22% of the immigrant population reported poor SRH. Immigrants facing housing problems (PR: 1.46; CI95%:1.20-1.78), those unemployed (PR:1.48; CI95%1.32-1.95) and economically inactive (PR:1.98; CI95%: 1.56-2.51), with poor formal social contacts (PR:1.70; CI95%:1.16-2.52), who did not politically participate (PR:1.78; CI95%: 1.25-2.59), and those who did not felt a connection with society (PR: 1.40; CI95%: 1.13-1.73) had a higher probability of reporting PSRH. Conclusions: Policies should offer migrants the possibility to settle in good social and economic condition, promote efforts to eliminate social exclusion and prevent the associated health inequalities. Thus, immigrants might be able to achieve their development potential and contribute to the social and economic development of their countries of origin and destination. This is especially important in the context of the economic crisis in Europe, and its impact on health might be the cause for the loss of the healthy immigrant effect especially in countries that have been particularly affected by this crisis. Besides, the results in this thesis reflect the need for gender-oriented social and integration policies. Immigrant women and men are particularly exposed to economic exclusion (insufficient income, unemployment). This integration and immigration policies should challenge the dominant perception of ‘unskilled’ migrants, seek to improve skills recognition, improve working conditions and help in regulating the informal economy of both the feminized low paid domestic care work and the informal work among men.
- Efficiency and equity dimensions of Primary Care: the consequences of a changing contextPublication . Dimitrovová, Klára; Perelman, JulianABSTRACT - Background: Primary care is one of the key features for a sustainable, effective, and comprehensive health system, but its contribution depends on its strength. This dissertation evaluates (i) changes and inequalities in access to primary care in Europe and Portugal, and, (ii) how an important reform of the Portuguese model for providing primary care affected the use of inpatient and emergency care. Methods: First, access to primary care in Europe was measured before (2007) and during (2012) the Great Recession; second, the evolution and financial cost of socioeconomic inequalities in access to primary care in Portugal were estimated from 2000 to 2014; third, the effect of different organizational models of primary care provision on all emergency department visits in Portugal between 2013 and 2015 was measured; and last, the impact of the Portuguese primary care reform on ambulatory care sensitive conditions (ACSC) and on disease specific ACSC related to health conditions targeted in the pay-for-performance were measured from 2000 to 2015. Results: Results show that access to primary care improved during the Great Recession in Europe and that this improvement was greater for people living in countries with higher investment in health. However, socioeconomic inequalities in access to primary care persisted in this period. In Portugal, there are significant and increasing socioeconomic inequalities in ACSC, which possibly reflect inequalities in access and continuity of care in primary care. People assigned to the new organizational model of primary care provision (Family Health Units) had a lower emergency department utilization. Nevertheless, the Family Health Units did not have an impact on the reduction of ACSC, nor on the rate of disease specific ACSC related to health conditions targeted in the pay-for-performance. Conclusion: Supportive health policies for stronger primary care are essential to guarantee access to primary care during economic recession periods, however more attention should be given to the reduction of socioeconomic inequalities in access to primary care. Also, in Portugal there are significant and increasing socioeconomic inequalities in access to primary care. The current primary care reform may have enhanced the asymmetries in the access and quality of services provided at this level, and the capacity of the pay-for-performance mechanism in achieving better health outcomes is questionable.
- Experiences of informal care for mothers with schizophrenia and related disorders: listening to the voice of mothers and their primary supportersPublication . Beling, Ángela Inés; Maia, Teresa; Gelhaus, PetraABSTRACT - Psychiatric reforms promoted the integration of the severely mentally ill in the community and increased their possibilities to determine their own life paths, have partners and start their own families. However poor parenting outcomes have been described among some of these parents, as well as poor cognitive, developmental, health and social outcomes in some of their children. Objectives and methodology: This research studied the experiences and needs of support in parenting of women with schizophrenia and related disorders, from the perspective of mothers and their caregivers in two contexts with different organization of mental health care. Fifty interviews were performed in the regions of Granada (Spain) and Mendoza (Argentina), and were analyzed through qualitative content analysis. Results and discussion: Mothers and caregivers were characterized according to socio-demographic and clinical characteristics. Positive aspects and strengths in parenting were identified by almost all participants, as well as difficulties in several areas of childcare. These included having negative feelings about motherhood, having difficulties in dealing with the overload of tasks, having difficulties in maintaining discipline of children and in interacting with them, and lacking adequate material conditions for childcare. Participants talked about several aspects of illness that affected parenting, but also mentioned other personal and contextual aspects that could hinder or be supportive in this respect. Support from their close social network was considered as fundamental for parenting. Dynamic of support was described in terms of who was providing support in daily lives, which activities of support were performed, how support was requested or provided so to be acceptable, and how given and received support was being valued. Several problems were identified in this dynamic, especially in the interaction between mothers and caregivers, and in mothers feeling displaced or hindered by the support they received. As well, most caregivers talked about the burden of care they experienced. Participants also described the support they received in parenting from mental health care and other institutions. Finally, participants identified uncovered needs of support, and needs of improving aspects of the support they were receiving. Coincidences and differences in the accounts of mothers and caregivers were highlighted, and mainly observed in the difficulties they described in parenting, the importance they gave to received care, and the unmet needs of support they expressed. Main differences among countries were related to their different organization of mental health care, accessibility of services and availability of support in parenting, support for other social needs and support for caregivers. As well, principles of community mental health care seemed to influence some experiences and understandings of illness and caring roles participants expressed. Conclusions and recommendations: Implications for mental health care policies and programs include the need of acknowledging the role as parents of their users and adapt the organization of care to their needs, providing support in parenting and especially preparing and supporting the role of informal carers in these aspects. It seems fundamental that mothers be active participants of their care, do not result displaced in their role, and support be provided in an acceptable way so to be effective. Caregivers need more support in their role, and burden needs to be prevented. Needs of higher care during psychotic breakdowns can be anticipated and care organized in advance.