Family adaptation in families of individuals with Down syndrome from 12 countries.

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.

Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.

Factors associated with non-adherence to outpatient follow-up of neonatal intensive care discharge.

OBJECTIVE: To analyze the factors associated with non-adherence to the outpatient follow-up of infants discharged from the Neonatal Intensive Care Unit. METHOD: A cross-sectional study that included 596 children who were discharged between October 1, 2014 and September 30, 2015 and who were referred to outpatient follow-up. The data were collected by evaluating the discharge report and attendance to the consultations. RESULTS: Of the 596 children referred for follow-up, 118 (19.80%) did not attend any outpatient care in the 12 months after discharge. Children with gestational age at birth ≥37 weeks (odds ratio 1.97, p=0.013), who were not resuscitated at birth (odds ratio 1.79, p=0.032) and those without continuous use of medications at home (odds ratio 1.69, p=0.046) were more likely to not adhere to outpatient follow-up. CONCLUSION: The expressive number of non-adherence to follow-up indicates the need for actions to ensure care continuity to newborns at risk after hospital discharge. Although the differences pointed out cannot be defined as predictors of non-follow-up, evidence of these variables allows us to recognize risks and seek to reduce factors that influence abandoning follow-up care.

[Distance education in neonatal nursing scenarios: a systematic review]. / Educação a distância no cenário da enfermagem neonatal: revisão sistemática.

OBJECTIVE: Identify resources that support learning mediated by technology in the field of neonatal nursing. METHOD: Systematic review with searches conducted in MEDLINE, LILACS and SciELO. Titles and abstracts were independently evaluated by two experts. RESULTS: Of the 2,051 references, 203 full-text articles were analyzed, resulting in the inclusion of nine studies on semiotics and semiology, cardiopulmonary resuscitation, general aspects of neonatal care, diagnostic reasoning and assessment of pain. Only two articles addressed the development of educational strategies and seven papers described the assessment of these strategies by experts and/or users. CONCLUSION: Distance education is an important resource for education, and its improvement and updating, and it particularly adds advantages for neonatal nursing by approximating teaching and real-life situations and by minimizing the exposure of newborns for teaching purposes. The lack of educational initiatives mediated by technology suggests the need for the development, evaluation and dissemination of educational resources focused on nursing care of newborns and their families.

Families' situation of caring for a child with a chronic condition: a mixed methods study.

OBJECTIVE: To analyze the meanings attributed by family members to the situation of caring for a child with a chronic condition (CCC), in the light of the Family Management Style Framework (FMSF). METHOD: A mixed-methods, parallel-convergent study, guided by the FMSF theoretical framework, using the conceptual component "Definition of the Situation". Fifty-three CCC families took part. Data was collected using a semi-structured interview, a questionnaire to characterize the participants and a Family Management Measure scale. Descriptive and inferential statistical analysis was carried out on the quantitative data and the qualitative data was subjected to deductive thematic analysis. RESULTS: Family members reported a view of normality in relation to CCC, also verified by the Child's Daily Life scale. However, they indicate the repercussions of the chronic condition on the family, and that they devote more attention and time to meeting the child's care needs, which was also verified in the View of the Impact of the Condition and Management Effort scales. CONCLUSION: Families have a positive view of the situation of caring for CCC at home, but point out some negative effects, such as the greater time spent caring for the child.

Resources for health literacy among caregivers of prematurely born children: a scoping review.

OBJECTIVES: to map the available evidence on resources used to promote health literacy among caregivers of prematurely born children during outpatient follow-up. METHODS: the Joanna Briggs Institute's scope review protocol was utilized. The search encompassed six databases, incorporating studies from 2012 to 2022. RESULTS: the three included publications revealed that the resources employed are: mobile applications, phone calls, individual counseling, videos, educational pamphlets, and group discussions. Implementing an education protocol during the transition home enhances scientifically grounded health promotion rates. CONCLUSIONS: there is limited literature addressing the health literacy of these caregivers. The nursing team plays a crucial role in health education and in developing resources applicable to these families.

The child's experience of becoming ill with COVID-19.

OBJECTIVE: To understand the experience of children when they become ill with COVID-19. METHOD: Qualitative-descriptive and exploratory study, guided by the World Health Organization's concept of Quality of Life. Twenty-four children participated, aged between seven and nine years, 11 months and 29 days, diagnosed with COVID-19. Data were collected through semi-structured interviews and underwent deductive thematic analysis. RESULTS: The children understood what COVID-19 is, its high lethality and transmissibility, and its forms of contagion and prevention. COVID-19 has been identified as something negative. The experience of children becoming ill with COVID-19 was permeated by changes in their routines, especially due to having activities limited to the home, emotional changes, and physical symptoms due to infection with the virus. CONCLUSION: The children understood the seriousness of the pandemic and identified the changes that had occurred. They also expressed understanding about the disease and its control. Knowing children's experience of illness can guide care actions aimed at them, recognizing that children's adequate understanding of what they experience can contribute to coping with illness and their participation in control actions.

[Factors associated with infection from the use of peripherally inserted central catheters in a neonatal intensive care unit]. / Fatores associados à infecção pelo uso do cateter central de inserção periférica em Unidade de Terapia Intensiva Neonatal.

This was an epidemiological, longitudinal and analytical study carried out in a hospital in the Brazilian state of Minas Gerais, with the aim of analyzing the factors associated with infection due to the use of peripherally inserted central catheters in newborn infants hospitalized in the intensive care unit. Data were collected via a structured form, filled out by the professionals and checked by the researchers. We studied a total of 291 catheters inserted into 233 neonates. The factors associated with catheter removal due to suspected infection were: prematurity; birthweight < or =1500 g; polyurethane catheter; non-centralized placing of the catheter; and duration of use >30 days. After multivariate adjustment, the following factors remained independently associated: weight < 2500 g at the time of insertion, catheter repair, and duration of catheter use. We concluded that factors related to staff practices contributed to removal of the catheters, indicating a need for interventions that improve the safety and efficacy of catheter use.

Factors that promote and threaten Hope in caregivers of children with chronic conditions. / Factores promotores y amenazadores de Esperanza en cuidadores de niños con condiciones crónicas.

to identify the factors that promote and threaten Hope in family caregivers of 2- to 3-year-old children with chronic conditions. qualitative study with 46 family caregivers of children between 2 and 3 years old with a chronic condition, discharged from two Neonatal Intensive Care Units. Data was collected through semi-structured interviews guided by the Model for Intervention in Mutual Help Promoter of Hope. Data were submitted to deductive thematic analysis. the following were identified as factors that promote Hope: The experience shared with members of the social support network; The relationship with the child; Clinical improvement of the child; Spirituality; Positive guidance for the future. The following were identified as factors that threaten Hope: Conflictual relationships and discredit of the child by close people; Uncertainties about the future; Insecurities about the ability to care for the child. the threatening factors of Hope generated suffering, pain, anguish, anxiety, and loneliness in caregivers. The promoting factors of Hope generated comfort, motivation, strength and joy. The findings allow Nurses to recognize the strengths and weaknesses of caregivers and adopt behaviors that promote Hope in caregivers of children with chronic conditions.

identificar los factores que promueven y amenazan la Esperanza en cuidadores familiares de niños de 2 a 3 años con condiciones crónicas. estudio cualitativo, incluyendo 46 cuidadores familiares de niños con condición crónica de 2 a 3 años, egresados de dos Unidades de Cuidados Intensivos Neonatales. La recolección de datos ocurrió mediante entrevistas semiestructuradas guiadas por el Modelo de Intervención en Ayuda Mutua Promotora de Esperanza. Los datos fueron sometidos a análisis temático deductivo. se identificaron como factores promotores de la Esperanza: la experiencia compartida con los miembros de la red social de apoyo; la relación con el niño; mejoría clínica del niño; espiritualidad; orientación positiva para el futuro. Se identificaron como factores amenazadores de la Esperanza: relaciones conflictivas y incredulidad con relación al niño por parte de personas cercanas; incertidumbres sobre el futuro; inseguridades sobre la capacidad de cuidar al niño. los factores amenazadores de Esperanza generaron sufrimiento, dolor, angustia, ansiedad y soledad en los cuidadores. Los factores promotores de Esperanza generaron consuelo, motivación, fuerza y alegría. Los hallazgos permiten a los enfermeros reconocer las fortalezas y debilidades de los cuidadores y promover la adopción de comportamientos que promuevan la Esperanza en los cuidadores de niños con condiciones crónicas.

(1) La esperanza fortalece a las familias de niños con condiciones crónicas. (2) Hay factores capaces de promover o amenazar la Esperanza de los padres. (3)Los factores que promueven la esperanza generan comodidad, motivación, fuerza y alegría. (4) Los factores amenazadores de la esperanza generan sufrimiento, angustia, ansiedad y soledad. (5) Los enfermeros pueden adoptar comportamientos que promuevan la esperanza y ayudar a las familias.

identificar quais são os fatores promotores e ameaçadores da Esperança em cuidadores familiares de crianças de 2 a 3 anos com condições crônicas. estudo qualitativo, incluindo 46 cuidadores familiares de crianças com condição crônica de 2 a 3 anos egressas de duas Unidades de Terapia Intensiva Neonatal. A coleta de dados se deu por meio de entrevista semiestruturada orientada pelo Modelo de Intervenção em Ajuda Mútua Promotor de Esperança. Os dados foram submetidos à análise temática dedutiva. foram identificados como fatores promotores da Esperança: A experiência compartilhada com membros da rede de apoio social; A relação com a criança; Melhora clínica da criança; Espiritualidade; Orientação positiva para o futuro. Foram identificados como fatores ameaçadores da Esperança: Relações conflituosas e descrença da criança por pessoas próximas; Incertezas sobre o futuro; Inseguranças sobre a capacidade de prestar os cuidados à criança. os fatores ameaçadores da Esperança geraram sofrimento, dor, angústia, ansiedade e solidão nos cuidadores. Os fatores promotores da Esperança geraram conforto, motivação, força e alegria. Os achados possibilitam que Enfermeiros reconheçam as potencialidades e fragilidades dos cuidadores e promovam a adoção de comportamentos promotores de Esperança em cuidadores de crianças com condições crônicas.

A Qualitative Study of the Spiritual Aspects of Parenting a Child with Down Syndrome.

Parenting a child with Down syndrome can sometimes present certain difficulties and, thus, spirituality may function as a dimension related to finding meaning in life and as a coping resource. Spirituality is a critical dimension of nursing care, but scarce knowledge is available to specifically inform family nursing practice. The aim of this study was to explore the spiritual aspects of parenting a child with Down syndrome, as a qualitative secondary analysis. This is an observational qualitative study, based on in-depth interviews from 42 participants. Data analysis found seven categories that concern meaning and purpose in life: hope, family strength, spiritual practices, personal beliefs, and love, and trust in healthcare providers. Spirituality is a resource in parents' lives who are living in this situation. Nurses should consider this dimension in supporting families and in improving management of this life and health condition.

COVID-19 pandemic impact on follow-up of child growth and development in Brazil.

Objectives: This study investigated the impact of the COVID-19 pandemic on the primary health care (PHC) services to follow-up the child growth and development (CGD) in Brazil. Methods: A cross-sectional study was conducted using secondary data related visits to assess the growth and development of children up to five years between Apr-2017 to Mar-2021. Differences between monthly rate of visits (per thousand inhabitants up to five) during the pandemic (Apr-2020 to Mar-2021) and before (Apr-2017 to Mar-2020) were analyzed using paired t test and control diagrams (averages ± 1.96 standard deviation). Results: A total of 39,599,313 visits for monitoring CGD was studied. The average monthly rate of visits dropped from 61.34 (per thousand) before the pandemic to 39.70 in the first 12 months of the pandemic (p < 0.001). In all states, except Rio Grande do Sul, there was a significant reduction, with differences ranging from -14.21% in São Paulo to -59.66% in Ceará. The Northeast region was the most impacted, being lower than expected in all 12 first months of pandemic. Conclusions: The number of visits to follow-up the CGD in PHC in Brazil decreased during the first year of the COVID-19 pandemic, varying over the months and between states and regions.

[Use of sweet solutions for neonatal pain relief in premature newborns: an integrative review]. / Emprego de soluções adocicadas no alívio da dor neonatal em recém-nascido prematuro: uma revisão integrativa.

The repeated painful experiences in newborns may have short- and long-time effects, especially in premature infants. The use of sweetened solutions during painful procedures has been recommended as a measure of pain relief. This study aims to evaluate the evidence of the effect of oral sucrose or glucose for acute pain relief in premature infants. An integrative review was conducted in the MEDLINE and LILACS databases. Eight articles were selected from 2005 to 2010. The analyzis of these articles revealed the analgesic effect of glucose and sucrose in acute procedures. No significant side effects were found in infants who received glucose/sucrose. We emphasize the importance of the use of the pain assessment scale most closely related to the predominant population in the Neonatal Intensive Care Unit, a scale easy to be used and handled by health professionals.

Palliative care production for health professionals in the context of home care.

OBJECTIVES: to analyze palliative care production developed by health professionals to home care patients. METHODS: this is an exploratory study, with a qualitative approach, using the transpersonal care theoretical framework. Thirteen interviews were conducted with health professionals and 18 observations were conducted on different cases. Content analysis was performed using MAXQDA©. RESULTS: actions performed: maintenance and follow-up measures to people eligible for palliative care, in acts of dialogue and "listening" to caregivers and users, conducting guidelines for the care and self-care process, performing technical procedures, delivery of materials, referrals and medical prescriptions to users. FINAL CONSIDERATIONS: it is perceived the need for advances in the implementation of government policies in Brazil that insert palliative care into the Health Care Network through educational, managerial and care actions that ensure human dignity, thus allowing the development of these and other palliative care interventions.

Guarantee of the social rights of children with chronic conditions: reinventing care towards civil rights.

OBJECTIVE: To analyze the experiences of families in the exercise of the rights of children with chronic conditions in public health, education and social assistance institutions. METHOD: ethnographic multiple case study, with qualitative approach, following the theoretical approach of Boaventura Santos. Experiences of the families of these children in a city were studied through interviews with family members, managers and professionals from social institutions (35), participant observations in social spaces (13) and creation of eco-maps (3). Critical Discourse Analysis was performed. RESULTS: the offer of services is lower than the demand, and exclusion processes persist. Given the hegemony of neoliberal and normality ideologies, meetings between family members and professionals revealed obstacles to civil rights; however, when these ideologies were challenged, the realization of their rights was enhanced. FINAL CONSIDERATIONS: the care to promote civil rights requires family members, managers and professionals to develop subjectivities that overcome neoliberal and normality ideologies, recognizing these children as subjects of law.

Problem-solving and coping in family adaptation of children with Down Syndrome.

OBJECTIVE: To analyze problem-solving and coping strategies of parents of children with Down Syndrome in family adaptation. METHOD: This is a qualitative research that used the Resiliency Model of Family Stress, Adjustment, and Adaptation. Participants were mothers and/or fathers from 40 families of children aged 1 to 7 years diagnosed with DS. Directed content analysis was performed, supported by software and considering a code dictionary. RESULTS: Problem-solving and coping proved to be a set of actions, behaviors, efforts, and communications that contributed to family adaptation and favored balance between the demands imposed by Down Syndrome and the acquisition of resources by the family. CONCLUSION: In the first moment, which corresponds to the time of news or diagnosis of the syndrome and the first days after birth, internal and external resources, which represent coping, are developed to accept and refocus ideas and feelings towards Down Syndrome. Over time these resources have an effect and cause changes in family functioning patterns and in the relationship of these families with the outside world, as they seek child development.

Maternal and Infant Outcomes Associated with Maternity Practices Related to COVID-19: The COVID Mothers Study.

Background: Maternity care practices such as skin-to-skin care, rooming-in, and direct breastfeeding are recommended, but it is unclear if these practices increase the risk of clinically significant COVID-19 in newborns, and if disruption of these practices adversely affects breastfeeding. Methods: We performed a retrospective cohort study of 357 mothers and their infants <12 months who had confirmed or suspected COVID-19. Subjects came from an anonymous worldwide online survey between May 4 and September 30, 2020, who were recruited through social media, support groups, and health care providers. Using multivariable logistic regression, Fisher's exact test, and summary statistics, we assessed the association of skin-to-skin care, feeding, and rooming-in with SARS-CoV-2 outcomes, breastfeeding outcomes, and maternal distress. Results: Responses came from 31 countries. Among SARS-CoV-2+ mothers whose infection was ≤3 days of birth, 7.4% of their infants tested positive. We found a nonsignificant decrease in risk of hospitalization among neonates who roomed-in, directly breastfed, or experienced uninterrupted skin-to-skin care (p > 0.2 for each). Infants who did not directly breastfeed, experience skin-to-skin care, or who did not room-in within arms' reach, were significantly less likely to be exclusively breastfed in the first 3 months, adjusting for maternal symptoms (p ≤ 0.02 for each). Nearly 60% of mothers who experienced separation reported feeling "very distressed," and 29% who tried to breastfeed were unable. Presence of maternal symptoms predicted infant transmission or symptoms (adjusted odds ratio = 4.50, 95% confidence interval = 1.52-13.26, p = 0.006). Conclusion: Disruption of evidence-based quality standards of maternity care is associated with harm and may be unnecessary.

Expert assessment of the "Neonatal Pain Assessment Program" online course.

OBJECTIVES: to assess layout quality, visual identity and content of the "Neonatal Pain Assessment Program" (Programa de Avaliação da Dor Neonatal) online course. METHODS: a descriptive exploratory study. The course was assessed by 24 experts in pain, neonatology and education. A form containing 20 questions on technical, interface and educational aspects was used. For each item, the score ranged from 0 to 1. Mean scores above 0.7 were considered indicative of high quality of the items. Descriptive statistics were used for data analysis. RESULTS: navigation, clarity, ease of localization, content relevance, contextualization, content correction, multiple windows, ease of use, ease of return, ergonomics, esthetics, special brands, audiovisual resources, information and portability were assessed. All aspects obtained a mean ≥ 0.70 and no changes were required. CONCLUSIONS: the Neonatal Pain Assessment Program is considered as quality educational technology and promising strategy for health education.

Factors associated with the discontinuance of outpatient follow-up in neonatal units.

OBJECTIVES: to identify predisposing and enabling factors as well as the health needs associated with the discontinuance of outpatient follow-up of newborns who were hospitalized at neonatal intensive care unit. METHODS: cross-sectional study, using the behavioral model of health services use. The study was composed of 358 mothers and newborns referred to the outpatient follow-up after discharge. Characterization, perception of social support, postnatal depression, and attendance to appointments data were collected, analyzed by the R software (3.3.1). RESULTS: outpatient follow-up was discontinued by 31.28% of children in the first year after discharge. In multiple regression analysis, the chance of discontinuance was higher for newborns who used mechanical ventilation (OR = 1.68; 95%CI 1.04-2.72) and depended on technology (OR = 3.54; 95%CI 1.32-9.5). CONCLUSIONS: predisposing factors were associated with the discontinuance of follow-up; enabling factors and health needs did not present a significant association. Children with more complex health conditions require additional support to participate in follow-up programs, thus ensuring the continuity of care.

[Work process in the neonatal intensive care unit: building a holistic-oriented care]. / Processo de trabalho na Unidade de Terapia Intensiva Neonatal: construção de uma atenção orientada pela integralidade.

This is a qualitative study aimed at analyzing the performance of healthcare professionals, as well as their contribution to a holistic-oriented care towards newborn babies in a Neonatal Intensive Care Unit (NICU). The study was carried out in the Sofia Feldman Hospital, in Belo Horizonte, State of Minas Gerais, Brazil. The study's subjects were ten healthcare professionals who cared for newborns in the NICU, and seven parents of admitted newborns. Data was collected by means of workshops and participant observation processes. Data were treated and analyzed by means of discourse analysis concepts. The resulting data highlighted the following aspects: the potential and holistic-oriented practices of healthcare professionals; the presence or absence of healthcare actions that materialized the holistic care; the different perceptions of the participants about the work carried out by the team; and in what sense the rationale of the work organization encompassed the workers' collective performance.

Factors associated with low Apgar in newborns in birth center.

OBJECTIVE: to analyze factors associated with Apgar of 5 minutes less than 7 of newborns of women selected for care at the Center for Normal Birth (ANC). METHOD: a descriptive cross-sectional study with data from 9,135 newborns collected between July 2001 and December 2012. The analysis used absolute and relative frequency frequencies and bivariate analysis using Pearson's chi-square test or the exact Fisher. RESULTS: fifty-three newborns (0.6%) had Apgar less than 7 in the 5th minute. The multivariate analysis found a positive association between low Apgar and gestational age less than 37 weeks, gestational pathologies and intercurrences in labor. The presence of the companion was a protective factor. CONCLUSION: the Normal Birth Center is a viable option for newborns of low risk women as long as the protocol for screening low-risk women is followed.