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.

Giving Voice to Caregivers: a game for family caregivers of dependent individuals. / Dar Voz aos Cuidadores: um jogo para o cuidador familiar de um doente dependente.

OBJECTIVE: To construct and assess a board game created to promote the effective transition of family members into caregivers of dependent individuals. METHOD: This was a qualitative exploratory and descriptive case study conducted with family caregivers of dependent individuals. RESULTS: The study resulted in the conceptualization, construction, and assessment of the board game. The game proved to be an important family evaluation tool, enabling open communication and interventions in family dynamics. CONCLUSION: The results showed that the game can help build new family narratives, providing an opportunity for open communication, expression of problems and sharing, representing an important family evaluation and intervention strategy.

Self-efficacy scale for the establishment of good relationships with families in neonatal and pediatric hospital settings.

OBJECTIVE: The purpose of this study was to develop and test the psychometric properties of the Self-efficacy Scale for the Establishment of Good Relationships with Families in Neonatal and Pediatric Hospital Settings. METHOD: Methodological study grounded on self-efficacy theory was conducted in three phases: conceptual and operational definition (review of the literature and interviews with the target population), content validity (opinion of five experts e three clinical nurses), and exploratory factor analysis and internal consistency reliability (cross-sectional survey with a valid sample of 194 nurses). RESULTS: A ten-point Likert scale with 40-item was designed and one item was excluded after review by experts. Three factors emerged from the exploratory factor analysis. The Cronbach's alpha for all items was 0.983 with item-total correlations in the range 0.657 to 0.847. Cronbach's alpha value if item deleted were less than or equal to 0.983. CONCLUSION: The final version of the scale demonstrated psychometric adequacy. It is a useful tool to be administered in the clinical, educational and research nursing fields to measure nurses' self-efficacy beliefs concerning the establishment of good relationships with families. OBJETIVO: El propósito de este estudio fue desarrollar y probar las propiedades psicométricas de la Escala de Autoeficacia para el Establecimiento de Buenas Relaciones con las Familias en Ambientes Neonatales y Pediátricos. MÉTODO: Estudio metodológico fundamentado en la teoría de la auto-eficacia se realizó en tres fases: conceptual y definición operacional (revisión de la literatura y entrevistas con la población objetivo), la validez de contenido (opinión de cinco expertos y tres enfermeras clínicas), y el factor de análisis exploratorio e fiabilidad interna de consistencia (estudio transversal con una muestra válida de 194 enfermeras). RESULTADOS: La escala de Likert de diez puntos con 40 ítems fue diseñada y un elemento fue excluido después de la revisión por expertos. Hay tres factores que emergieron del análisis factorial exploratorio. El alfa de Cronbach para todas las partidas fue 0,983, con correlaciones ítem-total en el rango de 0,657 a 0.847. El Valor alfa de Cronbach excluyendo el ítem quedo inferior o igual a 0.983. CONCLUSIÓN: La versión final de la escala demostró psicometría adecuada. Se trata de una herramienta útil para ser administrada en los campos clínicos, educativos y de enfermería de investigación para medir las creencias de autoeficacia de enfermeros sobre el establecimiento de buenas relaciones con las familias.

Family caregivers: what do they need? An integrative review.

OBJECTIVE: Aimed to identify the main needs expressed by family caregivers in caring for adependent person. METHOD: An integrative review of the literature in the period between 2010 and 2015 using specific search engine tools in the EBSCO and SCOPUSdatabases. RESULTS: 11 articles were selected, and the analysis of the scientific evidence obtained allowed for organizing the results into five thematic areas:transition into care, being responsible for everything, the importance of support, access to formal support, communication and informationprocesses. CONCLUSION: The results showed that caregivers have many needs in different areas, which should be addressed in nursing interventions. OBJETIVO: Este estudo teve como objetivo identificar quais as principais necessidades manifestadas pelo cuidador familiar no cuidado à pessoa dependente. MÉTODO: Realizou-se uma revisão integrativa da literatura no período entre 2010 e 2015 com o recurso de instrumentos de busca específicos, nas bases de dados EBSCO e SCOPUS. RESULTADOS: Foram selecionados 11 artigos A análise da evidência científica obtida permitiu organizar os resultados em cinco áreas temáticas: a transição para o cuidar, o ser responsável por tudo, a importância do suporte, o acesso aos apoios formais, a comunicação e a informação na tomada de decisão. CONCLUSÃO: Os resultados demonstram que o cuidador apresenta inúmeras necessidades em áreas distintas,as quais devem ser abordadasnas intervenções de enfermagem.

Clinical role of the nurse: concept analysis.

AIMS AND OBJECTIVES: To identify the attributes of the concept 'clinical role of the nurse' in the literature. BACKGROUND: The concept of nurses' clinical role is frequently mentioned in literature, but hardly explored in conceptual terms. This has implications for nursing practice and education. DESIGN: Qualitative and descriptive study, which corresponds to the first phase in the concept development of the qualitative concept analysis method - identification of concept attributes. METHODS: The critical literature analysis method was used to identify the antecedents, defining attributes and consequences of the nurse's clinical role. A systematic literature search was undertaken in International Literature in Health Sciences, Cumulative Index to Nursing and Allied Health Literature and Latin American and Caribbean Health Sciences. RESULTS: The clinical role was shown to be a process of complex interaction between nurse and patient, with critical thinking, informed experience and a sense of clinical autonomy as its antecedents. Consequences of nurses' clinical role include transformations in the organisation and process of nursing practice. A theoretical proposal was elaborated for the concept of the clinical role of the nurse, identifying the defining attributes, antecedents and consequences. CONCLUSIONS: The clinical role of the nurse concept that was developed represents innovative evidence on the theme. Nevertheless, a deeper understanding of nurses' clinical role is needed, as well as refinement of its conceptual components. This study should be integrated into a field research project, designed to illuminate how nurses manifest and articulate the concept in clinical practice. RELEVANCE TO CLINICAL PRACTICE: Knowledge of clinical role attributes, associated with nursing competencies, can contribute to reflection on the dimensions involved in nursing practice and inform not only teaching and professional practice, but also health policies.

Nurses' attitudes regarding the importance of families in pediatric nursing care.

Affective, cognitive and behavioral components affect nurses´ attitudes to include families in the care processes. The purpose of this study was to investigate the attitudes of nurses about the importance of including families in nursing care. Data collection was performed in pediatric and maternal-child unit of a Brazilian university hospital. A sample of 50 nurses completed the Portuguese version of the instrument Families'Importance in Nursing Care-Nurses' Attitudes (FINC-NA). The results indicated that nurses have supportive attitudes regarding families participation in nursing care. Attitudes of lower support for involving families in nursing care were found among nurses with older age, more time in the profession and who had no previous contact with contents related to Family Nursing. The application of the instrument in other contexts of assistance may help to illuminate important aspects of the challenges to implementing a family-centered approach in clinical practice.

Caring for children and families during the COVID-19 pandemic: innovations and changes experienced by nurses.

OBJECTIVE: To understand the experience of nurses working in pediatric units in the face of innovations and changes in the process of caring for children and families during the COVID-19 pandemic. Also, the objective is to understand the typical experience of nurses in this care. METHOD: Qualitative research, which involved the participation of 16 nurses from pediatric units of a public teaching hospital. The data were analyzed according to the theoretical-methodological framework of Alfred Schütz's social phenomenology. RESULTS: The participants' reports generated the categories: the challenge of experiencing changes amid fear, the team's adaptation to innovations and changes caused by the COVID-19 pandemic and the expectation for care and the work process. CONCLUSION: The understanding of the nurses' experience highlighted changes, team adaptations and expectations for the care of children and families, which, although permeated by learning, were experienced by ethical dilemmas and moral suffering for these professionals.

[Scale of conflict in health care decision-making: an instrument adapted and validated for the Portuguese language]. / Escala de conflito em tomadas de decisão em saúde: instrumento adaptado e validado para língua portuguesa.

The different options available to patients in the health environment now are implicated in increasingly difficult processes of decision-making, and may trigger conflict about them. This study had as its purpose, to develop an instrument that enabled us to know about this variable. Therefore, we decided to effect a transcultural adaptation and evaluation of psychometric properties of the Portuguese version of the Decisional Conflict Scale, which seeks information about decision-making and the factors that influence the choices made. The sample consisted of 521 nursing students, with a focus on decision-making regarding the flu syndrome. The results obtained on the reliability tests showed good internal consistency for all items (Cronbach a=0.94). The psychometric study allowed us to affirm that the Portuguese version of the Decisional Conflict Scale, which we call Scale of Conflicts in Decision-Making in Health (ECTDS), was a reliable and valid instrument.

[Stomas in neonatology: recovering the mother's memory]. / Estomas em neonatologia: um resgate da memória materna.

The scientific production overview that concerns the family and stomas urges for studies about the subject, especially about the experience in neonatal period. The present study aimed to comprehend mothers' experience about stomized children during neonatal period or the hospitalization period in Neonatal Intensive Care Unit (NICU). The methodological approach adopted in this study was Oral History, where interviews were conducted with nine mothers. The rescue of individual memories enabled construction of collective memory, organized in four themes: dreams versus reality, lost protection, in fear's company and motherhood is needed. The results allow a reflection about the importance of more effective actions that contribute to the autonomy and relief of suffering of the mother in NICU, where nursing care can be guided by the principles of Family Centered Care.