Incorporation, adaptation and rejection of obstetric practices during the implementation of the "Adequate Childbirth Program" in Brazilian private hospitals: a qualitative study.

BACKGROUND: The "Adequate Childbirth Program" (PPA) is a quality improvement project that aims to reduce the high rates of unnecessary cesarean section in Brazilian private hospitals. This study aimed to analyze labor and childbirth care practices after the first phase of PPA implementation. METHOD: This study uses a qualitative approach. Eight hospitals were selected. At each hospital, during the period of 5 (five) days, from July to October 2017, the research team conducted face to face interviews with doctors (n = 21) and nurses (n = 28), using semi-structured scripts. For the selection of professionals, the Snowball technique was used. The interviews were transcribed, and the data submitted to Thematic Content Analysis, using the MaxQda software. RESULTS: The three analytical dimensions of the process of change in the care model: (1) Incorporation of care practices: understood as the practices that have been included since PPA implementation; (2) Adaptation of care practices: understood as practices carried out prior to PPA implementation, but which underwent modifications with the implementation of the project; (3) Rejection of care practices: understood as those practices that were abandoned or questioned whether or not they should be carried out by hospital professionals. CONCLUSIONS: After the PPA, changes were made in hospitals and in the way, women were treated. Birth planning, prenatal hospital visits led by experts (for expecting mothers and their families), diet during labor, pharmacological analgesia for vaginal delivery, skin-to-skin contact, and breastfeeding in the first hour of life are all included. To better monitor labor and vaginal birth and to reduce CS without a clinical justification, hospitals adjusted their present practices. Finally, the professionals rejected the Kristeller maneuver since research has demonstrated that using it's harmful.

Brazil has high Cesarean Section (CS) rates, with rates far from the ideal recommended by the World Health Organization and a model of care that does not favor women's autonomy and empowerment. In 2015, a quality improvement project, called "Projeto Parto Adequado" (PPA), was implemented in Brazilian private hospitals to reduce unnecessary cesarean section, in addition to encouraging the process of natural and safe childbirth. One of the components of this project was to reorganize the model of care in hospitals to prepare professionals for humanized and safe care. The data were collected in 8 hospitals with interviews with 49 professionals, approximately two years after the beginning of the project in the hospitals. There were changes in the hospital routine and in the care of women after the project. The professionals incorporated practices such as skin-to-skin contact and breastfeeding; diet during labor; non-invasive care technologies, especially to relieve pain during labor; birth plan; pregnancy courses with guided tours in hospitals (for pregnant women and family); and analgesia for vaginal labor. There was adaptation of existing practices in hospitals to reduce CS that had no clinical indication; better monitoring of labor, favoring vaginal delivery. And finally, the professionals rejected the practice that presses the uterine fundus, for not having shown efficacy in recent studies. We can conclude that the hospitals that participated in this study have made an effort to change their obstetric model. However, specific aspects of each hospital, the organization of the health system in Brazil, and the incentive of the local administration influenced the implementation of these changes by professionals in practice.

Physical and psychiatric comorbidities among patients with severe mental illness as seen in Uganda.

While psychiatric and physical comorbidities in severe mental illness (SMI) have been associated with increased mortality and poor clinical outcomes, problem has received little attention in low- and middle-income countries (LMICs). This study established the prevalence of psychiatric (schizophrenia, bipolar affective disorder, and recurrent major depressive disorder) and physical (HIV/AIDS, syphilis, hypertension and obesity) comorbidities and associated factors among 1201 out-patients with SMI (schizophrenia, depression and bipolar affective disorder) attending care at two hospitals in Uganda. Participants completed an assessment battery including structured, standardised and locally translated instruments. SMIs were established using the MINI International Neuropsychiatric Interview version 7.2. We used logistic regression to determine the association between physical and psychiatric comorbidities and potential risk factors. Bipolar affective disorder was the most prevalent (66.4%) psychiatric diagnoses followed by schizophrenia (26.6%) and recurrent major depressive disorder (7.0%). Prevalence of psychiatric comorbidity was 9.1%, while physical disorder comorbidity was 42.6%. Specific comorbid physical disorders were hypertension (27.1%), obesity (13.8%), HIV/AIDS (8.2%) and syphilis (4.8%). Potentially modifiable factors independently significantly associated with psychiatric and physical comorbidities were: use of alcohol for both syphilis and hypertension comorbidities; and use of a mood stabilisers and khat in comorbidity with obesity. Only psychiatric comorbidity was positively associated with the negative outcomes of suicidality and risky sexual behaviour. The healthcare models for psychiatric care in LMICs such as Uganda should be optimised to address the high burden of psychiatric and physical comorbidities.

From adversity to advancement: leveraging war-tested approaches for the post-conflict reformation of the Ukrainian healthcare landscape.

The Russo-Ukrainian Conflict has had significant repercussions on Ukraine's healthcare system, resulting in civilian casualties and damage to healthcare institutions. The disruption of personnel, medical supplies, and patient transportation has created considerable challenges for healthcare services. However, there are successful approaches from comparable contexts that can serve as a catalyst for post-conflict healthcare reformation in Ukraine. Key strategies include improving healthcare accessibility for marginalized populations through standardized essential health and surgical care packages, rehabilitating damaged facilities, strengthening primary care provisions, and supporting war survivors with disabilities. By adopting these proven practices, Ukraine can strengthen its healthcare system and facilitate a sustainable recovery, contributing to the country's resilience and ensuring essential healthcare services for its population.

[Long-term survival in cancer: definitions, concepts, and design principles of survivorship programs]. / Langzeitüberleben bei Krebs: Definitionen, Konzepte und Gestaltungsprinzipien von Survivorship-Programmen.

Due to improvements in diagnostics and treatment options in hematology and oncology, and thus increasing chances of survival, the number of long-term survivors living with and after a cancer disease in Germany is constantly rising. Although the existing German healthcare system provides multifaceted healthcare offers that are available to long-term survivors, the healthcare situation of this population is not satisfactory. Thus, orientation guides for long-term survivors as well as new and innovative survivorship programs should be developed. This paper provides an overview of the complex of problems, defines relevant concepts, and devises central topics for the development of survivorship programs for long-term cancer survivors.

[Treatment of osteoporosis in the outpatient field : Possibilities and challenges]. / Osteoporosebehandlung im ambulanten Bereich : Möglichkeiten und Herausforderungen.

Despite the high incidence of osteoporosis, the high risk of subsequent fractures after an initial fracture and effective treatment options, there is a substantial deficit in the diagnostics and treatment of patients suffering from osteoporosis in Germany and worldwide. The reasons for this are multifactorial and can be attributed to physicians and patients as well as mismanagement inherent to the system. This article provides an overview of the challenges in the treatment of osteoporosis patients and shows the possibilities for improvement of care in the outpatient area. With respect to the exact schedule of the diagnostics and treatment of osteoporosis, reference is made to the pocket-sized edition of the current guidelines of the Governing Body Osteology (DVO).

High acuity rural transport: findings from a qualitative investigation.

INTRODUCTION: The High Acuity Response Team (HART) was introduced in British Columbia (BC), Canada, to fill a gap in transport for rural patients that was previously being met by nurses and physicians leaving their communities to escort patients in need of critical care. The HART team consists of a critical care registered nurse (CCRN) and registered respiratory therapist (RRT) and attends acute care patients in rural sites by either stabilizing them in their community or transporting them. HART services are deployed in partnership with provincial ambulance services, which provide vehicles and coordination of all requests in the province for patient transport. This article presents the qualitative findings from a research evaluation of the efficacy of the HART model, including staffing and inter-organizational functioning. METHOD: Open-ended qualitative research interviewing was done with key stakeholders from 21 sites. Research participants included HART CCRNs, RRTs, administrative leads, as well as local emergency department (ED) physicians and nurses. Thematic analysis was done of the transcripts. RESULTS: A total of 107 interviews in 21 study sites were completed. Participants described characteristics of the model, perceptions of efficacy and areas for improvement. Rural sites reported a decrease in physician- and nurse-accompanied transports for high-acuity patients due to the HART team, but also noted challenges in delayed deployment, sometimes leading to adverse patient outcomes. CONCLUSIONS: The salient issues for the HART model were grounded in a somewhat artificial distinction between pre-hospital and interfacility transport for rural patients, which leads to a lack of service coordination and potentially avoidable delays. A beneficial systems change would be to move towards dedicated integration of high-acuity transport services into hospital organizational structures and community health services in rural areas.

A literature review on the impact of concierge medicine services on individual healthcare.

The concept of concierge medicine, established in 1996, stands out for its focus on enhancing accessibility to healthcare providers and customized medical services. It is centered on key principles such as giving priority to quality and individualized care, managing a smaller group of patients to ensure improved service accessibility, and nurturing enhanced continuity in personalized treatment. This review explores various aspects of how concierge medicine impacts healthcare, encompassing areas such as patient satisfaction and involvement, health outcomes, preventive care, healthcare expenses, and ethical and legal considerations. While the affirmative influence of concierge medicine on individual healthcare has been evidenced in terms of patient contentment, active patient participation, preventive care, and early identification of illnesses, there remains a dearth of research data to firmly establish the correlation between concierge medicine and health-related outcomes. Moreover, comprehensive longitudinal studies focusing specifically on the economic and policy implications of concierge medicine are currently lacking. Therefore, further research, particularly in the domain of health economics, is crucial to comprehensively comprehend the implications of this approach. Similarly, there is a necessity for studies that can conduct a comparative analysis between the concierge medicine model and traditional healthcare models, aiming to draw more robust and definitive conclusions.

An exploration of extreme obesity and weight loss management for adults in rural, remote, and regional areas: a systematic review.

BACKGROUND: Extreme obesity is a global health issue impacting health and related health outcomes. Although extreme obesity is prevalent across all geographical settings, the condition is more common in geographically isolated locations. The success of mainstream weight loss strategies such as surgery, exercise, and dietary information within these communities remains unknown, and it is unclear if isolation facilitates or hinders treatment for weight management. AIM: This review aimed to identify common themes around weight loss and health and social impacts for extremely obese adults living in rural, remote, and regional locations. METHODS: A systematic literature review of peer-reviewed publications from May 2013 to May 2023 was undertaken and appraised using the Mixed Method Appraisal Tool (MMAT). Sequential synthesis was thematically analysed and described within a narrative account. Earlier dates were not included as initial research indicated a global surge in obesity within the early 2010s (Wang, Y., Beydoun, M. A., Min, J., Xue, H., Kaminsky, L. A., & Cheskin, L. J. (2020). Has the prevalence of overweight, obesity and central obesity levelled off in the United States? Trends, patterns, disparities, and future projections for the obesity epidemic. International Journal of Epidemiology, 49(3), 810-823) and a surge in bariatric treatments for the management of extreme obesity was noted around the same time (Mocanu, V., Dang, J. T., Sun, W., Birch, D. W., Karmali, S., & Switzer, N. J. (2020). An evaluation of the modern North American bariatric surgery landscape: current trends and predictors of procedure selection. Obesity Surgery, 30, 3064-3072). RESULTS: This review identified 13 studies that reported negative trends in extreme obesity for isolated locations linked to gender, culture, and poor mental health. Individualised and community models of weight loss support can be positive for certain demographic groups, specifically females, through the promotion of cost-effective, and locally available traditional food choices. CONCLUSION: Living with extreme obesity within geographically isolated locations and losing weight is challenging for women, Indigenous peoples, and people with low literacy and those from lower socio-economic backgrounds. Generalised advice about weight loss is often unsuccessful; however, weight loss is achievable with consumer engagement which considers the influence and impact of rurality. Further research focusing on individualised nursing models for managing morbid obesity within isolated locations is required.

Oncology and Palliative Care Integration Model: A Cost Analysis Study in a Brazilian Hospital Setting.

Background: In 2019, the São Paulo State Cancer Institute (ICESP) implemented a novel model integrating Oncology with Palliative Care specialists. We evaluated the impact of this model on healthcare resource utilization and costs. Methods: We analyzed data from all patients who passed away in February (1 month prior to implementation) and November (8 months after model implementation group) at ICESP, Brazil. Healthcare utilization data, including emergency department visits, hospital and intensive care unit admissions, chemotherapy, and radiotherapy use, were retrieved from Electronic Medical Records. Unit cost values were obtained from the administrative database. Results: A total of 198 patients who died in February and 196 in November were included in the analysis. Groups exhibited similarities in sex, age, ECOG, cancer type, previous outpatient palliative care consultations, and place of death (ward: 56.6% pre-intervention, 50% post-intervention). The mean cost per patient was US$13,226.29 pre-intervention and US$11,445.82 post-intervention (P = .007). Statistically significant differences were noted in days hospitalized in the surgical ward (227 vs 115), emergency department visits (233 vs 45), chemotherapy sessions (140 vs 26), and radiotherapy sessions (146 vs 10). Excluding outpatient treatments, the total costs for chemotherapy and radiotherapy in the last 30 days of life were US$16,924.45 pre-intervention and US$7851.65 post-intervention. Reductions were more pronounced in patients with ECOG 3-4 (P = .039). Conclusion: Our data suggests that the integration model was associated with a reduction in potentially inappropriate treatments during the last month of life, leading to decreased healthcare utilization and costs.

Explaining decisions of a light-weight deep neural network for real-time coronary artery disease classification in magnetic resonance imaging.

In certain healthcare settings, such as emergency or critical care units, where quick and accurate real-time analysis and decision-making are required, the healthcare system can leverage the power of artificial intelligence (AI) models to support decision-making and prevent complications. This paper investigates the optimization of healthcare AI models based on time complexity, hyper-parameter tuning, and XAI for a classification task. The paper highlights the significance of a lightweight convolutional neural network (CNN) for analysing and classifying Magnetic Resonance Imaging (MRI) in real-time and is compared with CNN-RandomForest (CNN-RF). The role of hyper-parameter is also examined in finding optimal configurations that enhance the model's performance while efficiently utilizing the limited computational resources. Finally, the benefits of incorporating the XAI technique (e.g. GradCAM and Layer-wise Relevance Propagation) in providing transparency and interpretable explanations of AI model predictions, fostering trust, and error/bias detection are explored. Our inference time on a MacBook laptop for 323 test images of size 100x100 is only 2.6 sec, which is merely 8 milliseconds per image while providing comparable classification accuracy with the ensemble model of CNN-RF classifiers. Using the proposed model, clinicians/cardiologists can achieve accurate and reliable results while ensuring patients' safety and answering questions imposed by the General Data Protection Regulation (GDPR). The proposed investigative study will advance the understanding and acceptance of AI systems in connected healthcare settings.

Indifferent minds, broken system: a critical examination of mental health care provision for Spain's incarcerated population with serious mental illnesses.

Background: Spain healthcare system is decentralized, with seventeen autonomous regions overseeing healthcare. However, penitentiary healthcare is managed nationally, except in Catalonia, the Basque Country, and Navarra. These variations impact mental health care provision for inmates with serious mental illness (SMI). Objective: To delineate differences between regions in terms of mental health care provision for individuals with SMI, available resources, and the perspectives of healthcare professionals operating in the Spanish prison environment. Methods: Employing an explanatory sequential mixed-method approach, the study conducted an extensive literature review, quantitative data collection through structured questionnaires, and qualitative data collection via focus groups and four in-depth interviews. Analysis involved calculating percentages and ratios for quantitative data and thematic analysis for qualitative data interpretation to comprehensively understand mental healthcare provision. Results: In December 2021, about 4% of inmates in Spain had SMI. There are three distinct models of mental healthcare within the Spanish prison system. The traditional penitentiary model, representing 83% of the incarcerated population, operates independently under the General Secretariat of Penitentiary Institutions at a national level. This model relies on an average of 5.2 penitentiary General Practitioners (pGP) per 1,000 inmates for psychiatric and general healthcare. External psychiatrists are engaged for part-time psychiatric assessment. Acute psychiatric hospitalization occurs in general nursing modules within penitentiary centers or in Restricted Access Units (RAUs) in reference hospitals. Two penitentiary psychiatric hospitals provide care to unimputable SMI inmates from all over Spain. Innovative penitentiary models, constituting 17% of the prison population, integrate penitentiary healthcare within regional public health systems. The Basque Country features a Mental Health Unit with full-time care teams within the penitentiary center. Catalonia emphasizes community care, providing full-time dedicated psychiatric services within and outside prisons, ensuring continued care in the community. Both models prioritize personnel with specialized mental health training and compensation akin to non-prison healthcare settings. Conclusions: Regional disparities in penitentiary mental healthcare models in Spain result in resource inequalities, impacting specialized care for inmates with SMI and opportunities for healthcare professionals. The models in the Basque Country and Catalonia offer valuable experiences for penitentiary healthcare.

Re-examining the roles of generalists and specialists in healthcare.

Increasing workload and case complexity of a multimorbid ageing population have catalysed primary care transformation for general practitioners to meet these challenges. There is also a need to re-examine the role of hospital specialists as overly disease-centric, hospital-based specialist care is no longer sustainable. A new specialist-generalist model can maximise the potential of generalists and specialists to provide person-centred care, increase cost-effectiveness, improve appropriateness of referrals, decrease length of hospital stay and lower mortality.

Parent and staff perceptions of patient and family-centred care in a Brazilian paediatric's hospital: Quantitative study.

BACKGROUND: Patient and family-centred care (PFCC) is a healthcare model has been acknowledged as the central pillar in the paediatric health care that recognizes the family's role and experience in the health care delivery. AIMS: This study investigated and compared the perception of PFCC from the perspective of staff and parents of hospitalized children and adolescents. METHODS: A quantitative and comparative cross-sectional survey was used in a convenience sample of 105 staff and 116 parents, who completed the Brazilian versions of the Perceptions of Family Centred Care-Parent and Staff questionnaires, with additional questions on their characteristics. Descriptive and analytical statistics were used, as well as the Kruskal-Wallis and Mann-Whitney tests and Spearman's correlation coefficient. RESULTS: Both parents and staff responses were positive and parents had significantly higher scores for 19 of the 20 items (p < 0.001). The item related to parental participation did not show any significant difference between the groups. CONCLUSION: The positive perception of PFCC for both groups is consistent with recommendations for expanded care that includes patient and family in healthcare settings. Parents' perception was more positive than staff perceptions of their delivery of family-centred care in hospital. The lowest score for the parent support subscale in both groups requires investigation.

From East to West: A Narrative Review of Healthcare Models in India and the United States.

The global healthcare landscape is fraught with quality, cost, equity, and innovation challenges. Despite this, successful healthcare interventions have emerged from unexpected locations. In India, the eradication of certain communicable diseases, the expansion of access to primary care, and the implementation of innovative methods such as telemedicine have demonstrated the potential for community-centered care. In the United States (US), improvements in healthcare quality, accessibility, and the utilization of medical technology, such as the incorporation of telehealth and artificial intelligence, have highlighted opportunities for technological innovation in healthcare delivery. This manuscript reviews the history and development of healthcare systems in India and the US, highlighting each system's strengths, weaknesses, lessons learned, and opportunities for improvement. By examining both systems, we strive to promote a healthcare model that incorporates lessons from each country to improve community-centered care and ultimately provide equitable access to all.

Preferences of older adults for healthcare models designed to improve care coordination: Evidence from Western Switzerland.

Implementing innovations in care delivery in Switzerland is challenging due to the fragmented nature of the system and the specificities of the political process (i.e., direct democracy, decentralized decision-making). In this context, it is particularly important to account for population preferences when designing policies. We designed a discrete choice experiment to study population preferences for coordination-improving care models. Specifically, we assessed the relative importance of model characteristics (i.e., insurance premium, presence of care coordinator, access to specialists, use of EMR, cost-sharing for chronic patients, incentives for informal care), and predicted uptake under different policy scenarios. We accounted for heterogeneity in preferences for the status quo option using an error component logit model. Respondents attached the highest importance to the price attribute (i.e. insurance premium) (0.31, CI: 0.27- 0.36) and to the presence of a care coordinator (0.27, CI: 0.23 - 0.31). Policy scenarios showed for instance that gatekeeping would be preferred to free access to specialists if the model includes a GP or an interprofessional team as a care coordinator. Although attachment to the status quo is high in the studied population, there are potential ways to improve acceptance of alternative care models by implementation of positively valued innovations.

Systematic Analysis of Literature on the Healthcare Financial Models to Follow in Russia and Romania.

This paper aims at finding the suitable healthcare financial model, focusing on their pros and cons, as debated by several scholars. The focus is on the potential benefits for both Romanian and Russian healthcare systems. To reach this goal, a systematic review of the literature was conducted, and various competitive advantages and disadvantages of the financial models were extracted. We reviewed 77 papers published during the last 21 years that were found in famous scientific databases. The main findings of the research point out that the financing of healthcare systems should be based on hybrid sources, and the funds raised should be better invested in order to create added value. By assuring a proper financing, the population's quality of life will improve and life expectancy will increase. This paper provides a new viewpoint to the problem because it reviews certain papers from Russian literature which are not usually included in the review articles. The research results have implications for the government, medical community, and academia, which should work together to strengthen the healthcare system.

Multidisciplinary headache clinic-impact of a new model for headache care in Dubai.

INTRODUCTION: Primary headache disorders pose a huge burden to health systems around the world. A new model for headache care was introduced at two primary health centers (PHCs) in Dubai, UAE. Our objective is to describe the model, and the impact it had on increasing the number of patients receiving specialist care as well as on patient's response and satisfaction level. METHODS: The model consisted of a weekly multi-disciplinary headache clinic with a neurologist, a general physician, a psychologist and a nurse, at each of the two PHCs. Patients were referred from all PHCs in Dubai. Follow up visits were either with the general physician or through tele-headache with the neurologist. We used the HURT questionnaire to evaluate the headache for each patient at baseline and then again at follow up. Information on patient satisfaction was also collected. Data were analyzed using SPSS version 21. RESULTS: The model proved to be effective in terms of increase in the number of headache patients receiving specialist care. Using HURT questionnaire, improvement was seen in good control and in the sense of control over headache, and in risk of medication overuse between baseline and follow up visits. Patient satisfaction with various aspects of headache care was 80-90% after the first visit and improved further at follow up. CONCLUSION: Our multi-disciplinary headache model improved the access of patients to neurologists, and resulted in improved headache control and patient satisfaction levels. Other countries can adopt such models to improve headache care for their patients.

Pediatric Cardio-Oncology Medicine: A New Approach in Cardiovascular Care.

Survival for pediatric patients diagnosed with cancer has improved significantly. This achievement has been made possible due to new treatment modalities and the incorporation of a systematic multidisciplinary approach for supportive care. Understanding the distinctive cardiovascular characteristics of children undergoing cancer therapies has set the underpinnings to provide comprehensive care before, during, and after the management of cancer. Nonetheless, we acknowledge the challenge to understand the rapid expansion of oncology disciplines. The limited guidelines in pediatric cardio-oncology have motivated us to develop risk-stratification systems to institute surveillance and therapeutic support for this patient population. Here, we describe a collaborative approach to provide wide-ranging cardiovascular care to children and young adults with oncology diseases. Promoting collaboration in pediatric cardio-oncology medicine will ultimately provide excellent quality of care for future generations of patients.

Assessment of the Perception of People Living With HIV Regarding the Quality of Outpatient Care at a Reference Facility in the Federal District, Brazil.

The effectiveness of antiretroviral treatment has transformed HIV infection into a chronic transmissible condition, requiring health systems to adapt in order to care for people living with HIV. The Chronic Care Model (CCM) is the gold standard for this type of care in many countries. Among its tools, the Patient Assessment of Chronic Illness Care (PACIC) questionnaire gives the patient's perspective of the care provided. The aim of the present study was to adapt and apply, for the first time, the questionnaire to people living with HIV to determine their perception of the quality of care provided at a reference hospital in the Federal District of Brazil. This is a case study conducted in 2019 at a teaching hospital, with a convenience sample of 30 individuals treated for at least 1 year at the facility. The median PACIC score (3.5 with a range of 1.0-5.0) seems to suggest that the users perceive the outpatient care provided by the hospital as being basic. The "delivery system design/decision support" component was deemed the best (5.0, with a range of 1.0-5.0) and "follow-up/coordination" the worst (1.0, with a range of 1.0-5.0). The results suggest the need to improve the organization of care and make adequate use of community resources, in line with the CCM. The questionnaire makes it possible to determine the strengths and weaknesses of the care provided to people living with HIV and can be used as a planning and monitoring tool to improve management of the condition, with the contribution of the patient, in particular, thereby strengthening self-care.

[Mapping the intricacies of care networks for persons with disabilities, from the perspectives of users-citizens-guides]. / Cartografiar el tejido de redes de atención para personas con discapacidad, desde la perspectiva de usuarias-ciudadanas-guías.

This article presents an analysis of the production of care networks for persons with disabilities in the state of Paraíba, Brazil. We employed a qualitative methodology with a cartographic approach, involving the participation of four users-citizens-guides. Weekly virtual meetings were held throughout the second half of 2020, in which we were able to collect, systematize, and theorize on four issues: 1) guilt and (non) life expectancy on the part of persons with disabilities; 2) the place of disability in family dynamics; 3) the production of specific core relational dependency networks; and 4) the public vs. private care offerings for persons with disabilities. Based on these findings, we were able to lend visibility to and explicitly affirm the ways in which these user-citizens participate in the complex process of care building for persons with disabilities and their families.

En este artículo analizamos la producción de redes de atención para personas con discapacidad, en el estado de Paraíba, Brasil. Se trata de un estudio cualitativo, con enfoque cartográfico, en el que participaron cuatro usuarias-ciudadanas-guías. Se realizaron reuniones virtuales semanales a lo largo del segundo semestre de 2020, en las que pudimos recolectar, sistematizar y producir consistencia teórica, a partir de cuatro analizadores: 1) culpabilidad y (no) esperanza de vida de la persona con discapacidad; 2) el lugar de la discapacidad en la dinámica familiar; 3) la producción de núcleos de dependencia relacional específicos; y 4) el público vs. ofertas privadas de atención para las personas con discapacidad. A partir de ellos, fue posible producir visibilidades y enunciabilidades sobre las formas en que estas usuarias-ciudadanas son parte del complejo proceso de construcción de cuidados para las personas con discapacidad y sus familias.