Self-care deficits reported by school children with cystic fibrosis.

BACKGROUND: Self-care refers to the ability that an individual has or develops to regulate the functioning of the body. Health status and age are factors associated with dependency on, and the need for, someone else to take over self-care. In the present case, there was a self-care deficit. Cystic fibrosis is a chronic disease that occurs in one in 10,000 live births in Brazil, and the affected population in the country is predominantly pediatric (approximately 73%). Support from nursing teams is necessary to improve patients' skills until they can take full responsibility for their self-care. PURPOSE: This study aimed to identify self-care deficits based on reports from schoolchildren with cystic fibrosis. DESIGN AND METHOD: A qualitative study was conducted with eight Brazilian schoolchildren with cystic fibrosis, using an art-based technique during interviews. Minayo's thematic analysis was used for data analysis and interpretation. RESULTS: These results emerged from Orem's theory of self-care deficits and needs. A main theme labeled as universal self-care requisites was identified, and three subthemes were derived-maintenance of an adequate air supply; maintenance of a balance between activity and rest; and avoiding risks to life, bodily functions, and well-being. CONCLUSION: Schoolchildren living with cystic fibrosis have a negative attitude toward their disease, which makes it difficult for them to acquire the ability to care for themselves with greater autonomy. This leads to deficits in the self-care delivered by providers. IMPLICATIONS TO PRACTICE: It is necessary to recognize the deficits in self-care and the extent to which children living with cystic fibrosis depend on self-care providers. Families must be aware of these self-care deficits to develop holistic self-care abilities.

Prevalence of children with special healthcare needs: An epidemiological survey in Brazil.

PURPOSE: We aimed to estimate the prevalence and delineate the profile of children with special healthcare needs (CSHCN) in the three municipalities of Brazil's southern and southeastern regions from 2015 to 2017. DESIGN AND METHODS: This cross-sectional study included 6853 children aged 0-11 years. Participants were selected through complex sampling in 32 primary healthcare units. The Brazilian version of the Children with Special Healthcare Needs Screener© and a questionnaire were used to identify sociodemographic and family characteristics, health status, and health services utilization. Simple and multiple logistic regression models were used to evaluate the association between family and child characteristics and prevalence (P < 0.05). RESULTS: The prevalence of CSHCN was 25.3% (95% confidence interval: 21.0-30.0). Most participants required health services or were on long-term medication for a current chronic condition; approximately 53% of CSHCN had no formally recorded diagnoses. The most frequent health problems were respiratory conditions, asthma, and allergies. Approximately 60% of the CSHCN patients underwent follow-up examinations of the specialties pneumology, pediatrics, otorhinolaryngology, speech therapy, neurology, and psychology. Children of school age, of male sex, with premature birth, with a history of recurrent hospitalization, from non-nuclear families, and from underprivileged social classes were identified as risk factors for classification as CSHCN. PRACTICE IMPLICATION: These results contribute to the unprecedented mapping of these children in healthcare networks in Brazil. CONCLUSION: The high prevalence of CSHCN in medium and large municipalities in the southern and southeastern regions was associated with the child's previous health conditions and family structure.

Nurses' Views on How to Best Design a Program to Prevent Adolescents' Anxiety in the Perioperative Period. A Qualitative Study.

PURPOSE: To describe the nurses' views for consideration when designing a program to prevent adolescents' anxiety in the perioperative period. DESIGN: A qualitative descriptive case study using focus group and thematic analysis was conducted. METHODS: Three face-to-face focus group interviews were conducted in October and November 2019 in the pediatric department of a university hospital. A purposive criterion method was applied to achieve a sample of 19 pediatric nurse specialists. Data were organized and systematized in the professional software for qualitative and mixed methods data analysis software (MAXQDA) and treated through the thematic analysis method. The COREQ checklist was used to report data collection, analysis, and results. FINDINGS: Four major themes and 14 subthemes regarding the perioperative period were generated. The first, adolescent evaluation, included the knowledge evaluation about procedures, signs and symptoms, and desire to be engaged in care. The second, caring adolescents and parents, means that nurses must be ready to care for both, use the opportunities to implement the nursing interventions, and manage physical teen space to accommodate adolescents in the ward. The third, nurses' challenges in the perioperative period, comprise the lack of time and trained nurses to work with adolescents, and the absence of prior adolescents' preparation and postoperative feedback. The fourth, nursing consultation, consists in promoting interdisciplinarity, developing the nursing interventions, and the main content to be included in the program's design. CONCLUSIONS: Given the challenges experienced by nurses when caring for adolescents in the perioperative period, nurses suggested a systematized assessment of the adolescent at an early stage of the perioperative caring process. Added to this is the nurse's readiness for the adolescent and parents, as well as the existence of trained nurses to evaluate adolescents and to implement non-pharmacological interventions in the perioperative period. A nursing consultation emerges as the most suitable solution to include in a program to prepare adolescents for the surgical procedure and help them to manage anxiety. This kind of intervention should begin in the preoperative period, preferably after the decision on the need for the procedure.

Advocacy care on HIV disclosure to children.

Children with HIV are dependent on taking continuous medication and care, and family preparation is required when disclosing HIV. This study aimed to unveil families' experiences with HIV disclosure to children under 13 years old. Eight family members who have disclosed HIV to seropositive children were interviewed in-depth and individually. The fieldwork took place at a public paediatric outpatient hospital in Rio de Janeiro. The results showed that the family members' discourse highlighted two ways of knowing their own condition and disclosing the condition of the children with HIV. First, they needed to address the communication of bad news and discover their own HIV status through their children's disease. Second, the disclosure was a process constituted by four stages: preparing for disclosure, identifying the time, deciding how and where to tell, and instilling silence after disclosure. They also recognized that nurses had a role in the process as part of an interprofessional team. Nurses can develop advocacy care and empower family members in the preparation of safe HIV disclosure. By systematizing and institutionalizing the care advocacy process, nurses may enable caretakers and children to participate in their therapeutic management, improving adherence to the treatment and self-care with autonomy.

Breastfeeding experience of women after mammoplasty. / Experiência de amamentação de mulheres após mamoplastia.

OBJECTIVE: To describe and interpret the experience of breastfeeding among women who underwent mammoplasty surgery prior to motherhood. METHOD: A descriptive, qualitative study developed with women attended at a Human Milk Bank between 2014 and 2015. Data analysis was based on the content analysis method and supported by the Interactive Theory of Breastfeeding. RESULTS: 13 women participated in the study. Four categories emerged: 1) Success (or lack thereof) in Exclusive Breastfeeding: influence of maternal and child biological conditions; 2) Maternal feelings: perception about breastfeeding; 3) Decision making on the continuity of breastfeeding or the use of formula; 4) The role of health professionals in protecting, promoting and supporting breastfeeding: Information (or lack thereof) on the implications of the surgery. CONCLUSION: Unfavorable biological conditions of the women who underwent mammoplasty generated unsuccessful experiences in exclusive breastfeeding and limited their decision-making, despite their desire to breastfeed.

Normative analysis of the voice of children in Brazilian child protection legislation. / Análise normativa sobre a voz da criança na legislação brasileira de proteção à infância.

OBJECTIVE: to identify and analyse children's voices in healthcare decision making in the discourse of Brazil's child protection laws. METHOD: Documentary normative analysis of Brazil's child protection legislation (1988-2012) based on the content analysis of nine texts, conducted in 2015. RESULTS: The legislation acknowledges and stresses the voice of children in the decision-making process in research and healthcare. Any recognition of the right to dignity, liberty, information, and protection depends on what the adult decision-maker (with parental authority) believes is the child's capacity for discernment and whether the situation will cause self-harm. CONCLUSIONS: the normative child protection discourse grants children a voice, although with restrictions and under the authority of the adult with parental authority.

Guides or guidelines for interacting and playing with medical complex children: a qualitative documentary research.

OBJECTIVES: to identify content on play and interaction with children with special health care needs recommended in clinical guidelines; analyze play and interaction activities applicable to children with special health care needs and complex care requirements. METHOD: qualitative documentary research based on guides, protocols, or guidelines on playing and interacting with children with special and living with complex care. Search terms in English (guidelines, playing OR play, complex needs, OR chronic disease) and in Portuguese ( guia, brincar ou brincadeiras, condições crônicas ) on the first ten pages of_Google Search ® . Thematic analysis was applied to the information extracted from the documents. RESULTS: a total of nine documents with similar content were grouped into units of analysis, keeping only the interacting and playing activities applicable to children with special health care needs and living with complex care requirements, namely stimulation of potential, stimulation of adult-child interaction, and stimulation of the senses (touch, sight, and hearing), to be carried out by health professionals and family caregivers in the different care contexts. CONCLUSION: interaction and play are potential promoters of adult-child interaction, with application in the stimulating and life-delivering complex care for children.

Promoting knowledge translation: An ecosystem approach to evidence in health.

The dissemination and implementation of evidence in health contexts have been a concern of several international organizations responsible for recommending actions to health policymakers. World Health Organization has been advocating for an ecosystem of evidence to improve clinical practice and health professional education. Thus, in this article, we address the challenges to developing the evidence ecosystem from the point of view of health professional education, considering the contexts of practice and teaching, focused on knowledge translation. There are three pivotal challenges: producing qualified knowledge; adequate communication of the synthesized evidence; and institutional policy to sustain the implemented evidence in continuous and updated flow. The evidence ecosystem helps to understand these flows between the production and implementation of knowledge, based on the capacity and resources of different health systems. It needs to be developed in the field of health professional education, feedback in the contexts of practice and teaching, to contribute to third-generation knowledge being used by different users of health services.

Family caregivers' itineraries of preschool children who survived leukemia: implications for primary healthcare nursing.

OBJECTIVES: to analyze the path taken by family caregivers of preschool children who survived leukemia and discuss the implications for primary healthcare nursing. METHODS: the narrative interview guided by a talking map and body knowledge was used with family members of children who survived leukemia, living in Rio de Janeiro (capital) and São Paulo (countryside). Conversation analysis was applied to the data. RESULTS: five family groups (seven people) of five children started their journey in the professional subsystem of private services; four were assisted in the private sector since the onset of the illness; one was assisted in public and private services. Living conditions reduced barriers to accessing supplementary health, facilitating coordination, and listening to a reference professional. FINAL CONSIDERATIONS: the itinerary was marked by attentive listening to family caregivers by reference professionals, favoring early diagnosis, initiation of treatment, and resolution of leukemia with the cure of children.

Nurses' patterns of knowing about HIV disclosure to children.

OBJECTIVES: to identify and analyze nurses' patterns of knowing and experiences with the preparation of families for disclosure to children living with HIV seropositivity. METHODS: thirteen pediatric nurses from Rio de Janeiro participated in the research using the sensitive creative method. Data were treated with Orlandi's discourse analysis and Carper's patterns of knowing. RESULTS: nurses' speeches revealed socioculturally constructed imaginary and ideological formations. The personal pattern of knowing, under the influence of negative media about the disease in the 1980s, generated stigma and prejudice. Empirical, esthetic, and ethical patterns were built on training and professional practice of the 1990s-2010s. They composed a context of (in)security about competence, to contribute to preparing families to disclose HIV to children. FINAL CONSIDERATIONS: nurses' experience demonstrates knowledge to intervene and many challenges for their practical appropriation.

Participation of adolescents from the Quilombola community in the creation of an educational game about alcohol consumption.

OBJECTIVE: To describe and discuss the participation of adolescents from a quilombola community in the transformation of the comic "Possible Story" ("Uma História Possível"), from the Comic on alcohol, into an educational game. METHOD: Implementation of the creative and sensitive method of art-based research, with adolescents from a quilombola community in the state of Espírito Santo, for the development of a board game. RESULTS: The democratic and interactive space favored the problematization of images and narratives about alcohol consumption mediated in the comic book. The group selected scenes, reordered the story, devised questions and riddles, formulated true and false assertions in a 17-card composition of the board game. The potential of the game as a content mediating tool to promote learning, reinforcement, and fixation of scientific content was evaluated. CONCLUSION: The active and dynamic participation of adolescents took place from conception to evaluation of the board game, encouraging them to reflect on a community context of cultural permissiveness of alcohol use.

Participatory health education on school (re)inclusion of the adolescent cancer survivor.

OBJECTIVES: to analyze school (re)inclusion of an adolescent cancer survivor before/after participatory health education with adolescents. METHODS: qualitative and participatory research that included data from the medical record of an adolescent rhabdomyosarcoma survivor and Talking Map dynamics (to diagnose the demand for learning and assess changes). The body-knowledge dynamics were applied in the educational intervention. In a public school in Rio de Janeiro, the adolescent (reference case) and nine people (four teachers and five teenagers) generated empirical materials, which became the content analysis objects. RESULTS: strangeness to changes in an adolescent cancer survivor's body image, bullying, and acceptance were problematized in educational body-knowledge dynamics through relationships between changes and barriers to welcoming. The participatory educational process was essential in raising awareness by promoting re-inclusive actions. CONCLUSIONS: participatory-problematizing education contributed to constructing a new collective identity and improvement in school interaction among peers.

Neuman Systems Model in perioperative nursing care for adolescents with juvenile idiopathic scoliosis.

OBJECTIVE: To implement the nursing process, based on the Neuman Systems Model and the International Classification of Nursing Practice terminology, in the care of an adolescent who underwent corrective surgery for juvenile idiopathic scoliosis. METHOD: This is a qualitative study of the type of single case, with triangulation of data collection techniques (formal clinical interview, notes in a field diary and medical record information), developed with a 17-year-old adolescent and indication for corrective surgery. The empirical materials generated with the interviews carried out at admission and at discharge, observation and medical record information were treated with categorical content analysis. RESULTS: The categories of personal condition, anxiety, selfconcept, meaningful people, facilitating health resources, school, free time and leisure were recurrent. Diagnoses were defined with a focus on Anxiety, Knowledge on pain management (control) and Willingness (or readiness) to learn, associating them with the respective nursing interventions. CONCLUSION: The Model contributed to assess and recognize surgery stressors for the adolescent and to theoretically base the nursing process. The classification allowed systematizing nursing care records, elements of clinical practice, unifying vocabulary and codes.

Child health vulnerabilities during the COVID-19 pandemic in Brazil and Portugal.

OBJECTIVE: to analyze the vulnerabilities of children in the access to primary health care during the COVID-19 pandemic in Brazil and Portugal. METHOD: documentary study based on Brazilian and Portuguese governmental guidelines issued between March and August 2020 regarding access of children to primary health care. Thematic analysis was based on the precepts of health vulnerability. RESULTS: 13 documents were issued in both countries addressing access to vaccination and childcare. Due to the SARS-CoV-2, restrictions were imposed on the circulation of people in social environments, health services, and social protection, decreasing the demand for health services. Both countries continued programs to promote the health of breastfeeding infants. In-person childcare consultations were suspended for low-risk children in both countries. Portugal maintained routine vaccination while Brazil interrupted vaccination in the first 15 days of the pandemic. The countries adopted remote care strategies - telemonitoring, teleconsultation, and mobile applications - to maintain the bond between children and health services. CONCLUSION: longitudinality was affected due to restricted access of children to health promotion actions, determining greater programmatic vulnerability. Individual vulnerabilities are related to exposure to preventable and primary health care-sensitive diseases.

Pregnant women's contribution in the construction and evaluation of an educational technology: the "Comics for Pregnant Women".

OBJECTIVES: to describe the contribution of pregnant women to the construction and evaluation of educational technology. METHODS: a participatory study developed in three stages, which occurred between March 2018 and June 2019 for identifying the content, construction, and evaluation of the comic. Non-directive interviews were conducted in educational groups with 34 pregnant women. After the comic was built by a team, including a designer, an instrument was applied to 41 pregnant women to evaluate the items Objectives, Organization, Writing style, Appearance, and Motivation. RESULTS: the comic contains 40 pages of contents, illustrations, and quizzes (word search, cross-puzzle, seven mistakes, etc). The pregnant women evaluated it as easy to understand, self-explanatory, aesthetically attractive, and capable of motivating good care practices during pregnancy, obtaining a minimum agreement of 92.1%. FINAL CONSIDERATIONS: the innovation of the educational technology consisted of incorporating the voices of pregnant women in prenatal care, with the potential to stimulate reflections and the learning process of this target audience.

[Family members' concealing and silencing in the care of children under antiretroviral therapy]. / Ocultamento e silenciamento familiares no cuidado à criança em terapia antiretroviral.

The aims of this paper were unveiling the caregiver's everyday life of caring for children under antiretroviral therapy (ARVT), and analyzing the dimensions of care them. Qualitative research was conducted with a creative-sensitive method including seven family members and data were treated through discourse analysis. These family members' everyday life in the medication implementation was marked by concealing and silencing. The first one was represented by linguistic regularities, as expressions and acronyms do not appear in their enunciation, and also in the way their lives are organized facing stigma and bias related to the ARVT. The last one occurred in the relationship with children, as when family members were questioned about the medication, they answered in an evasive way. Concealing and silencing related to child HIV/AIDS are themes which need to be approached by nurses in their caring and health education interventions.

[Nursing research in the Americas]. / Pesquisa em enfermagem nas Américas.

The purpose of the article was to identify a problematic, challenges and strategies recommended in those texts and analysis the applicability of such recommendations reflected on papers published from 2005-2008. A thematic analysis was applied to the full texts available on LILACS data base. Results showed that the development of nursing research was articulated to the neoliberal and globalization economic system, the national health system, the healthcare demands of population, and nursing profession. The post-graduation expansion in Latin America was a result of the international efforts of the Brazilian post-graduation programs, and the increase number of nurse researchers as well as Center of Nursing Research. Because the scientific production is inserted on academic field, the research findings do not become healthcare policy yet. Nursing organizations and their partners need to continue making efforts to overcome old challenges and to build new meanings for nursing research.

Enhancing generalizability: moving from an intimate to a political voice.

Weak external validity of qualitative data has been a subject of debate outside and within the field of qualitative health research. Though some narratives have the power to reveal universal existential issues and inform theoretical development, each story remains unique and cannot be generalized. If the goal of qualitative researchers is to have narrative knowledge effect social change, we are faced with a pervasive problem. Our main objective with this article is methodological; that is, to argue and illustrate that a sequential-consensual qualitative design can yield data with adequate external validity to influence clinicians and public health programming. We seek to contribute to the debate on the generalizability of qualitative research in the health field and provide a methodological template for this type of qualitative design so researchers can apply it to future projects to transfer and translate popular knowledge in a way that can influence social change.

Reconfiguring insufficient breast milk as a sociosomatic problem: mothers of premature babies using the kangaroo method in Brazil.

This study focuses on Brazilian mothers who gave birth to premature babies who were discharged from hospital using the Kangaroo Mother Care Method. While mothers left the hospital breastfeeding exclusively, once back at home, they abandoned exclusive breastfeeding because of insufficient breast milk (IBM). In this project we explored how IBM was interpreted by mothers within their social context. Participatory research using the Creative Sensitive Method was done in the homes of mothers with family members and neighbours. We described the conflicting social discourse that influenced the mothers' perception of IBM and explored their sources of distress. At the hospital and Kangaroo ward, mothers considered that clinicians recognized they were experiencing IBM and thus supported them to overcome this problem. Back at home and in their community, other sources of stress generated anxiety such as: the lack of outpatient clinical support, and conflicting local norms to care and feed premature babies. These difficulties combined with economic constraints and discontinuity in models of health care led mothers to lose confidence in their breastfeeding capacity. Mothers, thus, rapidly replaced exclusive breastfeeding by mixed feeding or formula feeding. Our analysis suggests that IBM in our sample was the result of a socio-somatic process. Recommendations are proposed to help overcome IBM and corresponding contextual barriers to exclusive breastfeeding.