Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review.

BACKGROUND: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a long-term change leading to greater vulnerability. Knowing the characteristics of these transitional processes is important for promoting safe transitions in this population. This scoping review aimed to map the available evidence on health-illness transition processes in children with complex chronic conditions and their parents in the context of healthcare. METHODS: Six databases were searched for studies focusing on children aged 0-21 years with CCC and their parents experiencing health-illness transition processes, particularly concerning adaptation to illness and continuity of care, in the context of healthcare. Studies within this scope carried out between 2013 and 2023 and written in Portuguese or English were identified. The articles were selected using the PRISMA methodology. The data were extracted to an instrument and then presented with a synthesizing approach supporting the interpretation of the results. RESULTS: Ninety-eight methodologically broad but predominantly qualitative articles were included in this review. Children with CCC have specific needs associated with complex and dynamic health-illness transitions with a multiple influence in their daily lives. Several facilitating factors (p.e. positive communication and a supportive therapeutic relationship with parents and professionals, as well as involvement in a collaborative approach to care), inhibiting factors (p.e. the complexity of the disease and therapeutic regime, as well as the inefficient organization and coordination of teams) and both positive (p.e. well-being and better quality of life) and negative response patterns (p.e. negative feelings about the chronic illness) were identified. Some interventions to support the transitional process also emerged from the literature. Pediatric palliative care is seen as a good practice and an integrative approach for these children and families. CONCLUSION: Health professionals play a fundamental role in supporting the transitional process and promoting positive response patterns. More significant investment is needed at the clinical and academic levels regarding production and dissemination of knowledge in this area to ensure the awareness of children with CCC and that their needs are fully enhanced. REVIEW REGISTRATION: https://doi.org/10.17605/OSF.IO/QRZC8 .

The experience of children and family in pediatric home hospitalization: A systematic review of qualitative evidence.

OBJECTIVE: To synthesize the experiences of children and parents/caregivers in the process of pediatric home hospitalization (PHH). INTRODUCTION: The practice of home hospitalization (HH), while not a new concept has expanded in recent years. This model of care consists of continuous care at home for children with acute illness or acute chronic disease and presents itself as an alternative to conventional hospitalization (Middel, 2007; Parab et al., 2013). Excellence in pediatric healthcare is fundamental and this review provides a necessary understanding towards the experiences of children and their families in HH. METHODS: Research was carried out in three phases and included both published and grey literature in the CINAHL, MEDLINE, MedicLatina, PubMed, Cochrane Library, Psychology and Behavioral Sciences Collection, and OpenAIRE databases to find relevant articles. Studies published in Portuguese, English, Spanish, and French with no time limit were considered. RESULTS: Findings were aggregated into five categories: communication and care experiences, parental dynamics and role carers, benefits and challenges for parents and children, relationship between parents, children's, and healthcare professionals and enhancing continuity of care and family support. According to ConQual the confidence level of the results was moderate in all articles. CONCLUSIONS: Through PHH, it is possible to avoid the impact of a conventional hospitalization since it promotes family union, increases the affective bond, the feeling of security, comfort, tranquillity, relief, confidence, and autonomy, reducing stressors such as anxiety, fear, nervousness, uncertainty, and fear.

Parents' hope in perinatal and neonatal palliative care: a scoping review.

BACKGROUND: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death. OBJECTIVE: To map scientific evidence on parents' hope in perinatal and neonatal palliative care contexts. METHOD: a scoping review theoretically grounded on Dufault and Martocchio's Framework, following the Joanna Briggs Institute methodological recommendations. Searches were performed until May 2023 in the MEDLINE, CINAHL and PsycINFO databases. The searches returned 1341 studies. RESULTS: Eligible papers included 27 studies, most of which were carried out in the United States under a phenomenological or literature review approach. The centrality of women's perspectives in the context of pregnancy and perinatal palliative care was identified. The parental hope experience is articulated in dealing with the uncertainty of information and diagnosis, an approach to which interaction with health professionals is a determinant and potentially distressful element. Hope was identified as one of the determinants of coping and, consequently, linked to autonomy and parenthood. Cognitive and affiliative dimensions were the hope dimensions that predominated in the results, which corresponded to the parents' ability to formulate realistic goals and meaningful interpersonal relationships, respectively. CONCLUSION: Hope is a force capable of guiding parents along the path of uncertainties experienced through the diagnosis of a condition that compromises their child's life. Health professionals can manage the family's hope by establishing sensitive therapeutic relationships that focus on the dimension of hope. The need for advanced research and intervention in parental and family hope are some of the points made in this study. PROTOCOL REGISTRATION: https://osf.io/u9xr5/ .

Adolescent hope in the context of nursing care: A scoping review.

PROBLEM: Hope is a multidimensional concept with a multidisciplinary approach in different areas of health intervention. From the perspective of the discipline of nursing, the concept of hope in the adolescent has been defined. However, its characterization is not consensually established but is necessary for nurses to be able to plan interventions aimed at its promotion. This scoping review aims at mapping the existing knowledge about adolescent's hope in the context of nursing care and contributing to the improvement of nursing interventions. ELIGIBILITY CRITERIA: The review was conducted using Joanna Biggs Institute methodology, and was conducted in Pubmed, Cinahl, Scielo, Ebscohost, Open Grey, Mednar, Worldwidescience, and Science Direct. Inclusion criteria included quantitative, qualitative, or mixed studies as well as systematic reviews and opinion articles, published in Portuguese or English, without publication date limitation, with "adolescents" as the population, "hope" as a concept, and "nursing" as context. Overall studies quality was quite high. The extraction of relevant information from each selected article was summarized in a table that is publicly available at Open Science Framework. SAMPLE: A total of 1259 articles were identified by title and 1220 were excluded by abstract.25 empirical articles met the inclusion criteria. RESULTS: The concept of hope in this population was associated with other concepts such as resilience or well-being. Nursing interventions increase hope with positive outcomes in healthy or with chronic/complex diseases adolescents. CONCLUSION: Hope is an essential component of nursing care for healthy, with chronic or complex disease adolescents with increased interest in the scientific community. IMPLICATIONS: This review recommends orientations for the nursing process with a central focus in address human responses, nursing interventions, and the results of those interventions.

The experience of school-aged children with hospitalisation.

AIMS AND OBJECTIVES: This study intended to contribute to the improvement of nursing care for both children and their parents and aimed to identify the best and worst experiences of school-aged children during hospitalisation. BACKGROUND: Child hospitalisation has traditionally been studied from the parent's perspective, but studies in which the child is the subject are scarce and mainly focus on to the hospitalisation experiences. DESIGN: A cross-sectional, observational and descriptive exploratory design was used, and STROBE reporting guidelines were followed. METHODS: A paper survey was applied by the primary researcher within a 3 months period to 252 children. It presented two open-ended statements: 'In my opinion the best thing about the hospital is …' and 'In my opinion the worst thing about the hospital is…'. The study was submitted and approved by the national data protection commission and also by the ethics committees of each of the six institutions where the study was undertaken. Informed consent was also obtained from children and parents. RESULTS: Answers were analysed through content analysis. Five categories were identified for each of the open-ended statements. Children identified 'people', 'physical environment', 'activities', 'outcomes' and 'food' as best experiences. The worst experiences included: 'feelings', 'activities', 'food', 'environment' and 'outcomes'. CONCLUSIONS: The results allowed the identification of the children's most valued aspects of hospitalisation. RELEVANCE TO CLINICAL PRACTICE: The results should be considered by healthcare professionals in order to make the hospitalisation experience more positive from the perspective of the school-aged children.

Nursing care satisfaction from school-aged children's perspective: An integrative review.

AIM: This integrative review synthesizes the current knowledge on school-aged children's satisfaction with nursing care in acute care settings. BACKGROUND: Children identify aspects of nursing care that are not valued by their parents. This fact confirms the relevance of properly assessing children's satisfaction. DESIGN: An integrative review was performed. DATA SOURCES: A search for empirical studies was carried out in databases using the following search terms: satisfaction AND views OR opinions OR perceptions AND child AND nurs*. REVIEW METHODS: The search was limited to full-text studies involving children from 6 to 12 years old, written in English or Portuguese, and published between 1 January 2000 and 31 August 2016. Twenty qualitative studies and three quantitative studies were included for revision and were analysed by two independent reviewers. RESULTS: Three themes emerged: expectations of nursing care, experiences with care, and suggested strategies. Expectations and experiences allowed us to identify work within three main domains: personal domain (nurses' characteristics), professional domain (nurses' activities), and environmental domain (interaction between nurses and the environment). CONCLUSION: It is important to recognize children's rights to express their opinions about the nursing care they receive. Evaluation of both patients' and children's satisfaction should be systematically performed.

The parental care partnership in the view of parents of children with special health needs. / A parceria de cuidados pelo olhar dos pais de crianças com necessidades especiais de saúde.

OBJECTIVE To understand how the care partnership was experienced by parents of children with special healthcare needs. METHOD Qualitative, descriptive and exploratory study, carried out from December 2013 to February 2014. The method used was the narrative. The population corresponded to parents of children admitted to a medical service of a Pediatric Hospital in Portugal. The sample consisted of 10 parents. The data collection included the sociodemographic characterization and the etnobiografic orientation interview. Once transcribed, the interviews yielded 10 narratives of partnership experiences between the parents and the nursing team. RESULTS It was noted, as partnership opportunities, the training of parents and the collaborative decision-making, established in a dynamic, unique and ongoing relational process. CONCLUSION The opportunities for partnership are key assumptions for the care delivery focusing on the child and on the parents as their resources.

"What Do We Know about Hope in Nursing Care?": A Synthesis of Concept Analysis Studies.

Hope is a central concept within the nursing literature, which is crucial towards the development of nursing knowledge. Nursing teams play a crucial role in exploring the meaning of hope and promoting hope among patients and their families. This study aims to synthesize concept analysis studies of hope in the context of nursing care and to propose an evidence-based update of the definition of hope in the International Classification for Nursing Practice (ICNP®). Method: This is a literature review, involving the synthesis of studies concerning the concept analysis of hope in nursing practice. Peer-reviewed articles with fully accessible Portuguese or English text were considered. As we aimed to include a historical perspective of the concept, no restriction upon the time of publication was set. Articles were selected in March 2022 and updated in July 2023 using the Medline, CINAHL, and Scopus databases. The search terms used were "hope" AND "concept" AND "analysis" AND "nurs*". Only articles written in English or Portuguese were included. Two reviewers conducted the research synthesis and report independently to minimize the risk of bias in the included studies. This paper adheres to the PRISMA checklist. To clarify the concept of hope as perceived by patients and develop hope as an evidence-based nursing concept, 13 studies were reviewed. The concept of hope, its attributes, antecedents, and consequences, as well as similar concepts, were studied by nurses and synthesized into a definition. The identified antecedents include pivotal life events, stressful stimuli, and experiencing satisfaction with life. The analysis of its attributes, antecedents, and consequences has contributed to understanding its relevance in nursing care and provided a proposed update of hope in the ICNP®. This review provides conceptual clarity on how hope is defined and used in nursing practice and the potential factors that may impact the promotion of hope to provide opportunities for future nursing research.

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.

[Participated observation of nursing child health consultation]. / Observação participada da consulta de enfermagem de saúde infantil.

Situation diagnosis using exploratory and descriptive scientific methodology (participant observation with descriptive statistical treatment) in order to identify nursing' practices in the area of health promotion during a nursing child health consultation. The 31 consultations observed (n = 31) showed that the majority of observations occurred in children younger than 2 years being the most discussed topic feed with predominant use of expository methodology. There was also little use of informational support and when used relate to the themes of security and nutrition. Most providers raised questions and there was limited registration of the interaction between provider and child with an expenditure averaging of 23 minutes per consultation. Given the results and reflecting about them stands out as intervention the construction of a health promotion manual with the integration of theory and evidence of good practice in this area.

Hope Aspects of the Women's Experience after Confirmation of a High-Risk Pregnancy Condition: A Systematic Scoping Review.

BACKGROUND: Pregnancy is a period of transformation, hope, expectation, and worry for women and their families. A high-risk pregnancy refers to a pregnancy in which the mother and/or fetus are at greater-than-normal risk of complications, and it evokes a range of emotional and psychological experiences that largely depend on the care and support provided by health professionals. The purpose of this review is to summarize the existing literature on the lived experience of hope in women facing a high-risk pregnancy related to their own health and/or medical conditions related to the fetus. METHODS: This review followed the Joanna Briggs Institute's methodology. No limits on a date were applied to the search. Identified titles and abstracts were screened to select original reports and were cross-checked for any overlap of cases. We included studies that emphasized the experience of hope of pregnant women dealing with a pregnancy complication. MAIN RESULTS: According to the results of the present scoping review, we found two main dimensions: women experiencing a high-risk pregnancy themselves and prenatal diagnosis. In both cases, the women were in a dilemma between hope and hopelessness. CONCLUSION: The findings demonstrate that women facing high-risk pregnancies struggle with multiple fears and concerns about their own health and the fetus's health. Further research is needed to identify best practices for the care provided to the vulnerable populations.

Psychological Responses and Strategies Towards the COVID-19 Pandemic Among Higher Education Students in Portugal and Switzerland: A Mixed-Methods Study.

Background: The COVID-19 pandemic has caused overwhelming changes in individual and community daily-life, resulting from the public health measures implemented to contain it, and also from its psychological and socio-economic consequences. These shifts and consequences impacted the entire population, but some groups are more likely to be affected by these changes, including higher education students. Objectives: a) to investigate mental health status and its determinants among higher-education students in Portugal and Switzerland; and b) to explore adjustment patterns used by these students to overcome the impact of the COVID-19 pandemic. Methods: A cross-sectional study with a mixed-methods sequential explanatory design was conducted in two phases. First, an online survey was conducted among higher education students in Portugal and Switzerland, in Portuguese and French respectively. A convenience sampling method was used. Second, some participants from the first phase were invited to participate in four online focus group discussions (two in each country) using a maximum variation sampling method. Results: The survey was answered by 1,880 students. Portuguese students revealed higher levels of stress and anxiety, but lower depression symptoms and less resilient coping compared to Swiss respondents. Hope was identified as an explanatory variable for mental health symptoms in students from both countries. In the focus groups (n = 27), 13 adjustment strategies were found, which were subdivided into three spheres: personal, social, and contextual. Conclusions: The results suggest that the COVID-19 pandemic had a mild to moderate impact on most of the evaluated mental health variables. Nevertheless, the students reacted and mobilized positive short-term strategies, which need to be reinforced in order to prevent long-term psychological harm. In addition, our results can inform psychosocial interventions to minimize psychological impact, anxiety, depression, and stress due to sanitary crises or other population-wide problems or disasters.

Predictive Model of the Psychological Well-Being of Nursing Students During the COVID-19 Lockdown.

Introduction: Lockdowns due to the COVID-19 pandemic radically changed nursing education. Along with social isolation, the transition to distance education affected the well-being of students in several countries, particularly Portugal and Spain. Objectives: To identify which variables are predictors of psychological well-being for Portuguese and Spanish nursing students during mandatory lockdowns. Methods: A multicenter, cross-sectional, descriptive, correlational study involving a sample of 1075 students (944 women, mean age 22.46 + /-4.95 years). Data were collected from an online questionnaire which applied the following scales: Perceived Stress Scale (α = .820); Brief COPE-14 Subscales (α = .430 < 0.930); Well-being Manifestations Measure Scale (α = .940); Herth Hope Index (α = .850). A multiple regression model was created to predict the psychological well-being of nursing students. Results: The following predictor variables were identified in the model of the psychological well-being of students during the COVID-19 pandemic: perceived stress (ß = .405; p ≤ .001); hope (ß = .404; p ≤ .001); and the mechanisms of active coping (ß = .405; p ≤ .001), planning (ß = .097; p ≤ .001), and positive reinterpretation (ß = .053; p = .12). These five variables predicted 62.0% of the nursing students' psychological well-being (R 2 = .620; F = 350.82; p ≤ .001). Conclusion: Promoting students' mental health is essential, especially in periods of great adversity, such as a pandemic. Our results lead the way for the design and validation of an intervention program that addresses the five variables identified as predictors of students' psychological well-being.

Promotion of Self-Management of Chronic Disease in Children and Teenagers: Scoping Review.

BACKGROUND: The scientific literature describes that self-management of chronic illness leads to improved health outcomes. Knowledge about interventions that promote self-management behaviors in children and teenagers has been poorly clarified. This study aims to map, in the scientific literature, the nature and extent of interventions that promote self-management of chronic disease, implemented and evaluated in contexts of health care provided to children and teenagers. METHODS: The guidelines proposed by the Joanna Briggs Institute were followed. The survey was conducted in June 2021, with access to international databases and gray literature, in Portuguese, English, French, and Spanish. RESULTS: Interventions that promote self-management of children and teenagers can be developed through a local contact or through technological means of support for health care. The use of online supports, such as applications or communication platforms, should be parameterized with health professionals, according to the needs of users. CONCLUSIONS: The acquisition of self-management skills in pediatrics is a process supported by the family, health professionals and the community, in which the nurse, in partnership, can promote communication and health education through cognitive strategies, behavioral programs included in physical or online programs, adjusted to the patients' needs.

Hope in palliative care nursing: concept analysis.

BACKGROUND: Hope has long been considered essential to humans in several disciplines, nursing included. At the end-of-life, hope is a complex and dynamic emotion, and there have been different interpretations and conceptions of hope. AIM: To develop hope in palliative care as an evidenced-based nursing concept: analyse its attributes, antecedents and consequences. METHOD: This study follows Walker and Avant's concept analysis: (a) select a concept; (b) determine the aims or purposes of analysis; (c) identify as many uses of the concept as possible; (d) determine the defining attributes; (e) identify a model case; (f) identify borderline and contrary cases; (g) identify antecedents and consequences; and finally (h) define the empirical referents. FINDINGS: Antecedents included symptom control, existential suffering, interpersonal relationships and the establishment of realistic goals. The synthetic attributes were a positive outcome expectancy and a process oriented towards the present and future. The concept's consequences were quality of life, survival, acceptance and a peaceful death. CONCLUSION: This study revealed a strong history of publications on the subject. The analysis of attributes, antecedents and consequences of the concept of hope contributed to understanding its relevance to palliative care nursing and provided suggestions for effective interventions and future research.

Mental Health and Psychological Impact during COVID-19 Pandemic: An Online Survey of Portuguese Higher Education Students.

The COVID-19 pandemic has had significant psychological impact on vulnerable groups, particularly students. The present study aims to investigate the mental and psychological impact of the COVID-19 pandemic and associated factors in a sample of Portuguese higher education students. An online cross-sectional study was conducted among 1522 higher education students selected by convenience sampling. The survey assessed mental health symptoms as well as sociodemographic variables, health-related perceptions, and psychological factors. Results were fitted to binary and multivariable logistic regression models. The overall prevalences of stress, anxiety, and depression were 35.7%, 36.2%, and 28.5%, respectively. Poor mental health outcomes were related with being female, having no children, living with someone with chronic disease, facing hopelessness, and lacking resilient coping. Future studies focusing on better ways to promote mental health and wellbeing among students are warranted. It is necessary to gather more evidence on the post-pandemic mental health using robust study designs and standardized assessment tools.