Quality of life in the voice of children who depend on health technologies: Mixed methods study.

OBJECTIVE: To examine the quality of life of children who depend on health technologies as expressed in their own words. METHODS: A parallel and convergent mixed methods design was employed with 30 aged five to 12 year old children who depend on health technologies. Data collection was done through a characterization form, Pediatric Quality of Life Inventory 4.0 questionnaire with the total sample in quantitative phase; semi-structured interviews with a subset of nine participants in qualitative phase. Quantitative and qualitative data were analyzed using descriptive statistics and deductive thematic content analyses, respectively. RESULTS: Findings from PedsQL 4.0 showed that quality of life for children who depend on health technologies is average. However, data integration through mixed methods showed that this average goes beyond quantitative data through hearing the children's own voices. The results from data integration pointed out that children recognize their limitations and adapt to them; what most affects their quality of life is the emotional domain; children reported suffering prejudice due to their physical limitations; and that the school positively impacts their quality of life. CONCLUSIONS: Data integration highlighted that children acknowledge their limitations and pain generated by these devices. Concerns about the future and the ability to do things that other children the same age can do was the most impactful aspect on their quality of life. IMPLICATIONS FOR PRACTICE: Nursing care plans should consider that what affects most children who depend on health technologies' quality of life is anxiety for the future of being incapacitated or dependent.

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.

A Fun Way to Learn About Diabetes: Using Therapeutic Play in a Brazilian Camp.

PURPOSE: Understanding disease mechanisms inside the body is crucial to engage youth with type 1 diabetes (T1D) in self-care behaviors. This study describes how Instructional Therapeutic Play (ITP) group sessions held by nurses in a Brazilian camp can enhance youth's understanding about T1D. DESIGN AND METHODS: Youth with T1D participated in video recorded ITP group sessions guided by the Sensitive Creative Method. First, participants were asked to create an artistic production based upon the query "What happens in the body of a young person who has diabetes?". They described their drawings and shared information, providing opportunities to discuss T1D pathophysiology. Second, campers were told a story about a child who had T1D onset using a rag doll and illustrative figures. Participants were asked to create a second artistic production based upon the same initial query. Finally, campers had another presentation of the drawings, discussion, and sharing through the question "How did the story told help you understand your diabetes?" Transcriptions of ITP sessions were submitted to thematic analysis. RESULTS: Twenty participants (9-17yo) were assigned to age/gender matched groups. Four themes were built: Designing insulin production; Experiencing the glycemic vigilance in diabetes management; The ITP session as a safe space to share challenges with nurses and peers; and Unraveling the myths of diabetes with the ITP session. CONCLUSION: Therapeutic play sessions enhanced youth's knowledge and unraveled myths of T1D pathophysiology. PRACTICE IMPLICATIONS: ITP sessions can be developed by nurses in order to deliver age-appropriate diabetes education to pediatric patients.

Factors associated with family risk of children with special health care needs.

OBJECTIVE: To identify the factors associated with family risk of children with special health care needs. METHODS: Bicentric study, with a cross-sectional design and a quantitative approach, with family caregivers of children with special health care needs. Instruments were applied to obtain a sociodemographic characterization, and identify and classify the family risk. For analysis between variables, Mann-Whitney and Fisher's exact tests were used and the Spearman's correlation coefficient was calculated. RESULTS: One hundred and eighteen caregivers participated in the study. The average family risk score was 3.53 (±3.76), with a median of 3.0, and minimum and maximum values of 0 and 16, respectively, with no significant difference between the two studied Brazilian municipalities. In municipality 1, the number of siblings presented a positive correlation with the average family risk score (0.011, p<0.05). Level of education and marital status of the caregiver showed a significant association with the result (0.038 and 0.002, respectively). The social classification variable presented a negative correlation with the outcome in municipalities 1 (0.003, p<0.01) and 2 (0.006, p<0.01). CONCLUSION: To classify the family risk and recognize associated factors can be taken as a basis for fair home care to children with special health care needs.

[Sociodemographic and academic profile of nursing students from four Brazilian institutions]. / Perfil sociodemográfico e acadêmico de discentes de enfermagem de quatro instituições brasileiras.

This study aimed to describe the sociodemographic and academic characteristics of nursing students from four Brazilian Educational Institutions. It is a prospective cross-sectional study. The data were collected between April 2011 and March 2012, through a survey form with questions about sociodemographic and academic characteristics of the students. The participants were graduate students enrolled in the nursing course, aged 18 years or older. 705 students participated, and these were mostly women, single, childless, who lived with their families, did not take part in sport activities and performed leisure activities. Also, most students do not participate in research groups, were not granted scholarships, are not employed, are satisfied with the course and do not intend to leave it. This study may become an important tool for the development of strategies that address the needs of students and also improve the quality of the teaching and learning process, reducing dropout rates.

Mental health of parents of children and adolescents who require special health care.

OBJECTIVE: To identify the manifestations presented by parents of children and adolescents who require special health attention that can impact their mental health. METHODS: exploratory, qualitative research, based on the concept of vulnerability, with data collection carried out through interviews with 18 parents of children and adolescents with special health care needs, hospitalized in the pediatric ward of a hospital in Paraná, between May/2017 and May/ 2018. Data analyzed by inductive thematic analysis. RESULTS: parents experienced situations of vulnerability when providing care at home, with repercussions on their mental health, expressed by manifestations of lack of protection, anxiety and depression. FINAL CONSIDERATIONS: It is important that health professionals seek to expand actions to promote care and reduce situations that generate threats, insecurities, concerns and damage to the health of parents, which can impact and further weaken care for children and adolescents who need attention especially health.

Focus group in the development of concepts for a Nursing model: experience report.

OBJECTIVE: To communicate the experience of developing concepts for the construction of a care model through focus groups. METHODS: An experience report on the development of concepts through remote focus groups with members of a research group from a public university in southern Brazil. RESULTS: Focus groups were developed in which homogeneity and heterogeneity criteria were observed among participants. In addition to the concepts of the nursing metaparadigm, the concepts of care and family-centered care were developed, relevant to the nursing care model in question. FINAL CONSIDERATIONS: Despite the challenges of conducting remote focus groups, they were suitable for the collective construction of concepts for a nursing care model, allowing the interaction of participants from different locations.

Hospital discharge intervention developed in a dialogical way with families to prepare them to care for children with chronic diseases at home: Mixed methods study.

A convergent parallel mixed methods design with qualitative data collection embedded in a quasi-experimental study was developed to examine the potential of three modalities of preparation for hospital discharge of the families of children with chronic diseases in terms of uncertainty levels and management of the disease at home. Caregivers of these children were divided into three groups: two experimental groups and one control group. Two scales were applied: one measured family management, and the other evaluated uncertainties in relation to the disease. In addition, an in-depth interview was conducted. Wilcoxon's test and the integrated response index were used in data analysis to compare performance between the groups. Inductive thematic analysis was employed for the qualitative data. The data were integrated, comparing the groups before and after preparation for hospital discharge. Twenty-five family caregivers completed this study. Data integration showed that the intervention group, in which the families developed planning to prepare for discharge in a dialogical way with professionals, presented better perceptions regarding care management when compared to structured guide and usual care groups. Participation of families in planning for hospital discharge showed a reduction in uncertainties regarding the disease and better care management of children at home.

Health care network for children with zika virus from the perspective of professionals.

OBJECTIVE: To know the perspective of health professionals working in specialized care regarding the assistance offered to children with Congenital Zika Virus Syndrome in the Health Care Network. METHOD: Qualitative study carried out in Campo Grande-MS through semi-structured interviews, between September and October 2020, with 12 professionals working in a reference service for people with physical and intellectual disabilities. Minayo's thematic analysis and the theoretical subsidies of the care model for chronic conditions were used for interpretation. RESULTS: Assistance in the network is weakened by aspects related to access, monitoring and integration between different professionals/services. The potential involves the implementation of the referral and counter-referral system, the communication/integration between these services and the training of professionals. FINAL CONSIDERATIONS: The participants perceive that assistance is influenced by the availability of trained professionals to work in a network and the optimization of access and follow-up at different points of care.

Vulnerability in adolescents' daily life during the COVID-19 pandemic.

OBJECTIVE: To know the vulnerability in adolescents' daily life during the COVID-19 pandemic. METHOD: Qualitative research carried out with 25 adolescents from a public school in a municipality in southern Brazil in the second half of 2021 through individual semi-structured interviews. Data were submitted to thematic content analysis and interpreted with the vulnerability theoretical framework. RESULTS: These adolescents' daily lives during the COVID-19 pandemic presented difficulties in keeping family members working, changing habits and routines, accessing classes, the internet and increasing intra-family violence. CONCLUSION: Vulnerability in adolescents' daily life during the pandemic can be identified as the absence of interaction in the school context and access to learning resources, reflecting on individual and social vulnerability. Unemployment and possible access to other sources of income have an impact on programmatic vulnerability. Reflection on practices in the context of health and school is suggested, based on the vulnerability identified in adolescents' daily lives during the COVID-19 pandemic.

[Vulnerability of children with special health care needs: implications for nursing]. / Vulnerabilidade das crianças com necessidades especiais de saúde: implicações para a enfermagem.

This qualitative-based descriptive, exploratory research aimed to provide an account of the vulnerability of children with special health needs in terms of required care and everyday life support. The subjects were ten family members/caregivers of children who were approached in a pediatric admission unit of a teaching hospital. Data were produced by means of the creative and sensitive method mediated by creativity and sensitivity group dynamics and submitted to French discourse analysis. Results pointed out that the individual social and programmatic vulnerability of children was translated into their clinical frailty, difficulty in gaining access to healthcare services, and absence of specific public policies. The study recommends that the referral and counter-referral system, as well as the specific health care public programs and policies aimed at this clientele, be restructured. For this purpose, nursing professionals should strive to actively listen to family members/caregivers and subjectively recognize the home-based caregiving process carried out by the families.

[Child with HIV/AIDS: perception of the antiretroviral treatment]. / Criança com HIV/AIDS: percepção do tratamento antirretroviral.

This article presents a cutting from the multicentric study carried out in the municipalities of Porto Alegre and Santa Maria/ RS with the objective of unveiling the perception and the life experience of the child regarding the antiretroviral treatment. With qualitative approach, the study was carried out with seven children of five to ten years of age, in the period from 2006 to 2010, after approval by Committee National for Ethics in research and the Committees of Ethics in research. Based on the thematic analysis was obtained the results: the day-to-day life of the child with medicines; the family care upon the adhesion to the antiretroviral treatment; the professional care:perception of children with infection. Observation showed that the children face adversities, know and appreciate the treatment in spite of the paradoxical movement of rejection/acceptance expressed by the fight against the syndrome.

Continuity of care for children with chronic conditions after discharge: a constructivist grounded theory.

OBJECTIVES: to understand the meaning of continuity of care for children with chronic conditions through transitional care from hospital to home. METHODS: this is a qualitative study, conducted from a Constructivist Grounded Theory perspective. Purposive and theoretical sampling were used to recruit 35 participants, including nurses, professionals from the interprofessional hospital team, and actors responsible for healthcare in the home context. The research was conducted at two large hospitals, between March and September 2019. Semi-structured interviews were conducted. Data analysis was carried out using initial and focused coding, according to constructivist grounded theory. RESULTS: the substantive theory that emerged from this study was named "Postponing the next hospitalization". Eight categories-concepts and 18 elements were derived from the data to support the substantive theory. FINAL CONSIDERATIONS: transitional care from hospital to home acts as a reminder for the resumption of continuity of care after discharge.

Social and territorial inequalities in the mortality of children and adolescents due to COVID-19 in Brazil.

OBJECTIVE: To analyze the mortality rate of COVID-19 among children and adolescents aged 0 to 14 years. METHODS: Ecological and exploratory study of children's mortality rate by COVID-19 in Brazil, from February to October 2020. The study used the Severe Acute Respiratory Syndrome database to collect the data and made the analysis using descriptive spatial statistics by age and race/color classification. RESULT: The mortality rate due to COVID-19 represented 1.34 deaths per one hundred thousand in the total group evaluated. The age group with the highest frequency and mortality rate was 1 to 4 years of age. There is a higher frequency of deaths in the brown and Indigenous population. CONCLUSION: The distribution of deaths due to COVID-19 is unequal in the national territory, and there is a wide variation in the mortality rate by age and race/color groups.

[Risk factors for low birth weight in public maternities: a cross-sectional study]. / Fatores de risco para baixo peso ao nascer em maternidades públicas: um estudo transversal.

Low birth weight is considered the most influentialfactor in determining neonatal morbidity and mortality. Also it may be associated with low levels of socioeconomic development and maternal and child care. This quantitative research aims to describe the risk factors for low birth weight newborns in public hospitals in the city of Santa Maria, Rio Grande do Sul Brazil. Quantitative data were analyzed using descriptive statistics. The results suggest the main risk factors are: the preterm birth,family income below - two minimum salaries, nulliparity and multiparity, the occurrence of previous abortion, surgery delivery, infections, pre-eclampsia and a history of other children of low weight. It is recommended to invest in the quality of prenatal care, since many of these risk factors can be avoided or minimized by prenatal care quality.

Continuity of care for children with special healthcare needs during the COVID-19 pandemic.

OBJECTIVE: To describe the continuity of care for children with special healthcare needs during the COVID-19 pandemic through the perception of their caregivers in the Northeast of Brazil. METHODS: Qualitative descriptive-exploratory research carried out between June and September 2020, in a municipality in the Northeast of Brazil. Eleven caregivers participated through semi-structured interviews conducted at home. The data were submitted to thematic content analysis. RESULTS: The social isolation period and the suspension of health services affected the continuity of care, configuring the category "Implications of the COVID-19 pandemic for the continuity of care". Caregivers expressed fear of children contracting the coronavirus, characterizing the category "Fears and uncertainties of the COVID-19 pandemic in view of the vulnerability of children with special healthcare needs". FINAL CONSIDERATIONS: Caregivers' reports revealed problems in the continuity of care for the studied cohort. Therefore, health care practices must be rethought in times of pandemic.

Health care network (dis)articulation in late and moderate prematurity.

OBJECTIVE: to analyze the Health Care Network (dis)articulation of late and moderate premature infants in the first year of life. METHOD: a qualitative study with semi-structured interview, which addressed the care network constitution in a municipality in southern Brazil. Fifteen mothers of infants participated. Thematic content analysis and flowchart were used to describe networks and services. RESULTS: first contact in Primary Health Care is a decisive factor for the recognition and articulation of neonates/infants in the network and enables resolution, especially in childcare demands. Secondary and hospital care services support isolated acute events or chronic conditions, without articulation between levels of care and in a uniprofessional way. FINAL CONSIDERATIONS: attention to health conditions is organized and structured in a uniprofessional, fragmented and disjointed way, which makes it impossible to form a Health Care Network premature infants' perspective.

Factors associated with the development of skin allergies in premature newborns in the first year of life.

OBJECTIVE: To identify the factors associated with the development of skin allergies in the first year of life in moderate and late preterm infants. METHOD: This is a cross-sectional study with 151 moderate and late preterm infants, born between May 2016 and May 2017. Participants were evaluated in the 3rd, 6th, 9th and 12th months of life, in telephone interviews. Statistical analyzes were performed in the SPSS software with frequency comparison tests and logistic regression. RESULTS: The prevalence of skin allergy, in the perception of caregivers, among late and moderate preterm infants was 16%. Factors such as being admitted to neonatal intensive care (p = 0.006) and not being breastfed (p = 0.041) showed a significant association with the development of skin allergies in the 3rd and 12th months of life, respectively. CONCLUSION: Skin allergy, in the perception of caregivers, is more severe in newborn infants who have clinical respiratory and gastrointestinal manifestations, be it conditioning or cause-effect. Breastfeeding proved to be a protective factor in the first year of life.

Fertility-Related Concerns and Uncertainties in Adolescent and Young Adult Childhood Cancer Survivors.

Purpose: This study aimed to uncover the fertility-related concerns and uncertainties in adolescent and young adult (AYA) childhood cancer survivors. Methods: In this qualitative study, participants were recruited from an oncohematology outpatient clinic at a university hospital in Brazil. Twenty-four AYA cancer survivors, aged 18- 24 years (13 men and 11 women), participated in individual semistructured interviews focusing on two parts-sociodemographic and clinical variables and guiding questions that enabled understanding of the concerns and uncertainties regarding the risks of infertility and their impact on relationships and the need for guidance. Data were analyzed using inductive thematic analysis. Results: Four themes were identified from the data-(1) knowledge about fertility, (2) emotional impact and fertility-related uncertainty, (3) sharing the possible risk of infertility with partners, and (4) need for information on possible loss of fertility. Conclusion: The meanings attributed to the loss of fertility after cancer treatment uncovered the need for health professionals to organize survivor services in line with the survivors' needs, and include reproductive concerns and uncertainties in this planning. The study results provide insights for the development of health care services that meet the real needs of this particular population that has long-term follow-up demands.

Hospitalization perceived by children and adolescents undergoing cancer treatment.

OBJECTIVE: To know the perception of children and adolescents undergoing cancer treatment about hospitalization. METHODS: Qualitative research conducted with 13 children and adolescents hospitalized for cancer treatment at a referral hospital in southern Brazil. Semi-structured interviews mediated by the drawing technique were conducted from May to November 2018. Data was submitted to inductive thematic analysis based on the theoretical framework of Brazil's National Humanization Policy. RESULTS: Disturbances were detected in the professionals' communication with the hospitalized children and adolescents. The participants felt socially isolated and highlighted the importance of recreational activities during hospitalization. CONCLUSION: Infant cancer is complex and needs multidisciplinary care during the treatment, enabling the organization of healthy and welcoming spaces that favor humanization of care.