Parent and staff perceptions of patient and family-centred care in a Brazilian paediatric's hospital: Quantitative study.

BACKGROUND: Patient and family-centred care (PFCC) is a healthcare model has been acknowledged as the central pillar in the paediatric health care that recognizes the family's role and experience in the health care delivery. AIMS: This study investigated and compared the perception of PFCC from the perspective of staff and parents of hospitalized children and adolescents. METHODS: A quantitative and comparative cross-sectional survey was used in a convenience sample of 105 staff and 116 parents, who completed the Brazilian versions of the Perceptions of Family Centred Care-Parent and Staff questionnaires, with additional questions on their characteristics. Descriptive and analytical statistics were used, as well as the Kruskal-Wallis and Mann-Whitney tests and Spearman's correlation coefficient. RESULTS: Both parents and staff responses were positive and parents had significantly higher scores for 19 of the 20 items (p < 0.001). The item related to parental participation did not show any significant difference between the groups. CONCLUSION: The positive perception of PFCC for both groups is consistent with recommendations for expanded care that includes patient and family in healthcare settings. Parents' perception was more positive than staff perceptions of their delivery of family-centred care in hospital. The lowest score for the parent support subscale in both groups requires investigation.

Cost-effectiveness of home care services versus hospital care for pediatric patients worldwide: A protocol for systematic review and meta-analysis.

BACKGROUND: Despite the expansion of home care services (HCS) in several countries, there is still a need to systematically investigate the available evidence on the cost-effectiveness of this type of service compared to hospital care in the world, particularly for the pediatric population. Hence, we aimed to systematically synthesize and critically evaluate the evidence on the cost-effectiveness of HCS versus in-hospital services worldwide. METHODS: A systematic review and meta-analysis protocol guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols. Ten databases will be searched: MEDLINE/PubMed, Cochrane Library, Excerpta Medica database, cummulative index to nursing and allied health literature (CINAHL), Web of Science, SCOPUS, Science Direct, PsycINFO, Latin American and Caribbean Health Sciences Literature and Chinese national knowledge infrastructure with no restrictions on publication date or languages. A checklist for assessing the quality of reporting of economic evaluation studies will be applied. To assess the methodological quality of evidence from observational research on comparative effectiveness, the Good Research for Comparative Effectiveness Checklist v5.0 will be used. The heterogeneity among the studies will be assessed using the I2 statistic test. According to the results of this test, we will verify whether a meta-analysis is feasible. If feasibility is confirmed, a random-effect model analysis will be carried out. For data analysis, the calculation of the pooled effect estimates will consider a 95% CI and alpha will be set in 0.05 using the R statistical software, v.4.0.4. In addition, we will rate the certainty of evidence based on Grading of Recommendations Assessment, Development and Evaluation. All methodological steps of this review will be performed independently and paired by 2 reviewers and conducted and managed in the EPPI-Reviewer Software™. RESULTS: The results may have relevance for the basis of public health policies, regarding the forms of organization of HCS, especially in terms of complete economic evaluations through cost-effectiveness analysis in relation to hospital care. CONCLUSION: To the best of our knowledge this will be the first systematic review and metanalysis to synthesize and critically evaluate the evidence on the cost-effectiveness of HCS versus in-hospital services worldwide. The review will adopt a rigorous approach, adhering to PRISMA Statement 2020, using a comprehensive and systematic search strategy in 10 databases, further the gray literature, pre-prints, with no time period or language restrictions.

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.

Telehealth in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic: A scoping review protocol.

INTRODUCTION: Outpatient care for children and adolescents with chronic conditions needs to be continuous and programmed, encompassing comprehensive care, with periodically scheduled consultations, exams, and procedures, to promote quality of life and reduce mortality. In the context of the new coronavirus pandemic, however, outpatient care for children and adolescents with chronic conditions, in person, was hampered in favor of social isolation, a necessary sanitary measure to reduce and prevent the spread of Coronavirus Disease 2019. In response to this need, studies suggest telehealth in pediatrics as a fertile and expanding field especially in times of pandemics. Here, we aimed to map the evidence related to telehealth in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic, to identify which strategies were implemented and their impacts on the continuity of care. METHODS: A scoping review protocol is reported and guided by the Scoping Reviews Manual of the Joanna Briggs Institute. The search for evidence will cover the following databases: MEDLINE/PubMed, Cochrane Libary; Embase; Web of Science; Scopus; Cinahl and PsycINFO, plus additional sources, such as The British Library, Google Scholar, and Preprints [medRXiv]. No date or language restrictions will be employed in this scoping review. Two independent researchers will conduct the search strategy, study selection, data charting, and data synthesis. RESULTS: The findings will be presented through tables, charts, narrative summaries, and assessed based on the type of data charted as well as outcomes. Additionally, the meaning of these findings will be considered as they relate to the guiding question, the characterization and measurement of the impact of different telehealth modalities used in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic, and the implications for practice and further research. DISCUSSION: To the best of our knowledge, this will be the first scoping review to look specifically at the telehealth modalities to be used in outpatient care for children and adolescents with chronic conditions during the COVID-19 pandemic. We expect that our results will be of interest to practitioners as well as researchers concerned with this particular emerging issue in the pandemic context. Also, the plans for the dissemination of this study comprise peer-reviewed publication and conference presentations. TRIAL REGISTRATION: Open Science Framework Registration: osf.io/5pqgu.

Nurses' Perspectives on Acquiring Play-Based Competence Through an Online Course: A Focus Group Study in Brazil.

PURPOSE: The main stage of developing an educational health technology is meeting the expectations of users. Nurses in Brazil can benefit from online training about therapeutic play interventions. This study identified the learning demands of nurses for acquiring competence in the use of therapeutic play to build an online course. DESIGN AND METHODS: Focus groups study, guided by the COREQ guidelines. Nurses experienced in pediatric care participated in eight groups held in hospitals across all Brazilian regions in 2018. The focus group interviews had a mean duration of two hours and were moderated by the main researcher and an observer, both of whom were nurses experienced in qualitative research. All interviews were audio recorded. The transcripts of the audios were coded, from which the themes were developed, and thematic analysis performed. RESULTS: Nurses (N = 53, 8.5 ± 6.3 years of experience in pediatric care) reported their learning demands in three themes: "Learning theoretical concepts", "Developing therapeutic play skills", and "Learning the therapeutic play in a fun, interactive and motivational online environment". CONCLUSION: Nurses learning demands involve theoretical concepts and skills to implement therapeutic play through an interesting online course. PRACTICE IMPLICATIONS: By developing play-based competence through an online learning environment nurses can feel confident in implementing therapeutic play into their pediatric practice, setting the stage for a future of positive interaction between nurses and children in pediatric health care.

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.

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.

Pain, sleep patterns and health-related quality of life in paediatric patients with cancer.

PURPOSE: To compare sleep and health-related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. METHOD: A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n = 118; 8-18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hr. RESULTS: Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. CONCLUSIONS: The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.

Fatigue and health related quality of life in children and adolescents with cancer.

PURPOSE: The study examined the different dimensions of fatigue (general, sleep/rest, cognitive), health related quality of life (HRQL) (physical, emotional, cognitive, social), and the relationships between fatigue and HRQL in hospitalized children and adolescents with cancer in Brazil. METHOD: Participants were recruited from a pediatric oncology inpatient unit in a comprehensive cancer care hospital in southeast Brazil. They completed the PedsQL Multidimensional Fatigue Scale and the PedsQL Inventory of Quality of Life (Generic and Cancer module) once during hospitalization. RESULTS: The majority (66.7%) of the participants (n = 38; mean age 12.1 ± 2.9 years) had total fatigue scores < 75 on 0 to 100 scale; with the mean total fatigue score of 63.8 ± 18.5. The majority (72.2% generic; 83.3% cancer modules) had total PedsQL scores < 75 on 0 to 100 scale. The mean PedsQL score on generic module (61.1 ± 17.0) was similar to the mean PedsQL score cancer module (59.1 ± 16.7). Significant correlations were found between total fatigue and quality of life generic (r = 0.63, p = 0.000) and cancer module (r = 0.74, p = 0.000). CONCLUSIONS: The study is the first to report fatigue and health related quality of life in hospitalized children and adolescents with cancer in Brazil. Similar to experiences of other children in the world, our findings indicate that children and adolescents with cancer had problems with fatigue that were associated with low HRQL. Future studies are recommended to examine interventions (exercise, leisurely activities) that may alleviate fatigue and improve HRQL in pediatric patients with cancer.

Translational research and symptom management in oncology nursing.

In recent years, translational research (TR) has become a new approach for bridging basic research and clinical practice. This article examines studies in which the authors used TR to learn more about the underlying causes of selected symptoms, and to discuss these results in the context of cancer nursing and symptom management. A literature review was undertaken, plus critical analysis of the authors. TR conducted by cancer nursing scholars has been relatively limited in the past, but is becoming more common as nurses complete additional academic work in the basic sciences and develop research teams with colleagues of those areas of knowledge. The goal in these studies is to show how a set of variables explains differential interventional effects. The availability of TR provides new evidence for the management of symptoms experienced by individuals with cancer, which could lead to improvements in the care of cancer patients across the world.

Children and adolescents with chronic kidney disease in haemodialysis: perception of professionals.

OBJECTIVE: to identify aspects impacting on quality of life for children and adolescents with chronic kidney disease on hemodialysis, from the perspective of health professionals, as an essential step for the construction of a specific module of the DISABKIDS® instrument. METHOD: methodological study. Data was collected between May and June 2012, through personal interviews with 12 participants, in two dialysis centers. The empirical material was analyzed according to the thematic content analysis, using the program MAXQDA - Qualitative Data Analysis Software. RESULTS: we identifi ed seven themes: self-care, family support, impact of diagnosis, expectation of kidney transplant, truancy, socialization and stigma, grouped into three domains. CONCLUSION: the results showed aspects that impact the quality of life of these customers and, therefore, will be considered in the development of specifi c DISABKIDS® module. In addition, these aspects are relevant to the preparation and planning of actions directed towards children and adolescents with chronic kidney disease.

[Theory of unpleasant symptoms: support for the management of symptoms in children and adolescents with cancer]. / Teoria dos sintomas desagradáveis: subsídios para o manejo de sintomas em crianças e adolescentes oncológicos.

OBJECTIVE: To present an overview of the clusters of neuropsychological symptoms in children and adolescents with cancer from the perspective of the Theory of Unpleasant Symptoms. METHODS: A theoretical and reflective study based on international literature and the critical analysis of the authors. RESULTS: In scientific literature, there is scarcity of international studies and an absence of studies in Brazil regarding the neuropsychological symptom clusters in children and adolescents with cancer. The theory of unpleasant symptoms is consistent because it emphasizes the complexity and interaction of the symptoms, the interrelationship between symptoms, the factors that influence symptoms, and the results and consequences of symptoms, thus supporting the planning of nursing interventions in paediatric oncology. CONCLUSION: It is essential to update knowledge on this subject and discuss the theories that support research and the clinical practice of symptom management in order to better qualify nursing care.

The family's experience of the child and/or teenager in palliative care: fluctuating between hope and hopelessness in a world changed by losses.

OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and the Theory Based on Data were used. Fifteen families with kids and/or teenagers in palliative care were interviewed, and data were collected through semi-structured interviews. RESULTS: after the comparative analysis of the data, a substantive theory was formed "fluctuating between hope and hopelessness in a world changed by losses", composed by: "having a life shattered ", "managing the new condition", "recognizing the palliative care" and "relearning how to live". Hope, perseverance and spiritual beliefs are determining factors for the family to continue fighting for the life of their child in a context of uncertainty, anguish and suffering, due to the medical condition of the child. Along the way, the family redefines values and integrates palliative care in their lives. CONCLUSION: staying with the child at home is what was set and kept hope of dreaming about the recovery and support of the child's life, but above all, what takes it away even though temporarily is the possibility of their child's death when staying within the context of the family.

Care for technology dependent children and their relationship with the health care systems.

OBJECTIVE: to understand the experience of care delivery to technology dependent children based on the mothers' experience. METHOD: exploratory study with qualitative approach, based on the theoretical framework of medical anthropology and the narrative method. Twelve mothers participated and, as the technique to obtain the narratives, open interviews were held at the participants' homes. RESULTS: the narratives were organized into three thematic categories: the family system, identifying the care forms, the association between popular and scientific knowledge and the participation of the social network; the professional system, which discusses the relations between professionals and family, the hegemony of the biomedical model and the role of nursing; and the popular system, presenting popular care practices like spirituality and religiosity. CONCLUSION: the study provided support for a health care project that takes into account the families' moral and symbolic values and beliefs in view of the illness of a technology-dependent child. The results found can contribute towards changes in the health work process, so that its foundation is guided not only by the biomedical model, allowing the integration of the sociocultural dimensions into the health care movement.

Coping strategies used by hospitalized children with cancer undergoing chemotherapy.

PURPOSE: To analyze coping strategies used by children with cancer undergoing chemotherapy during hospitalization. DESIGN AND METHODS: This was an exploratory study to analyze qualitative data using an inductive thematic analysis. Semistructured interviews using puppets were conducted with 10 children with cancer, between 7 and 12 years old, who were hospitalized and undergoing chemotherapy. FINDINGS: The coping strategies to deal with chemotherapy were: understanding the need for chemotherapy; finding relief for the chemotherapy's side effects and pain; seeking pleasure in nourishment; engaging in entertaining activities and having fun; keeping the hope of cure alive; and finding support in religion. CONCLUSIONS: Children with cancer undergoing chemotherapy need to cope with hospitalizations, pain, medication side effects, idle time, and uncertainty regarding the success of treatment. These challenges motivated children to develop their own coping strategies, which were effective while undergoing chemotherapy. CLINICAL RELEVANCE: By gaining knowledge and further understanding about valid coping strategies during chemotherapy treatment, health professionals can mobilize personal and material resources from the children, health teams, and institutions aiming to potentiate the use of these strategies to make treatments the least traumatic.

High validity and reliability of the PedsQL™ Multidimensional Fatigue Scale for Brazilian children with cancer.

Among the main factors that affect patients' quality of life, fatigue is a significant symptom experienced by children during treatment. Despite the high incidence, there has been no validated scale to evaluate fatigue in children with cancer in Brazil. The purpose of this study was to examine the psychometric properties of the PedsQL™ Multidimensional Fatigue Scale, using self-reports of Brazilian children, 8 to 18 years of age, and proxy reports. A cross-sectional method was used to collect data from 216 subjects over an 18-month period. Reliability ranged from .70 to .90 except for sleep/rest fatigue, self-report (α = .55). No floor or ceiling effects were found in any dimension. Convergent validity was higher than .40 and divergent validity had 100% adjustment. The root mean square error of approximation was acceptable. The comparative fit index was lower than expected. The agreement between self and proxy responses was weak and moderate. The results demonstrate the reliability and validity of the Brazilian version in children with cancer. This is the first validated scale that assesses fatigue in Brazilian children and adolescents with cancer.

[Children and adolescents on hemodialysis: attributes associated with quality of life]. / Crianças e adolescents em hemodiálise: atributos associados à qualidade de vida.

OBJECTIVE: To identify quality of life impacting attributes related to health of children and adolescents with chronic renal failure,on hemodialysis, as initial step to build the specific module DISABKIDS®. METHOD: An Exploratory descriptive study, with qualitative approach, with data collected between August of 2011 to March of 2013, through focus group analysis, with 42 participants between 8 and 18 years, their parents and caregivers. The data analysis was conducted following the thematic content, using the program Qualitative Data Analysis Software. RESULTS: Seven themes were identified:water and food restrictions, limitations imposed by the treatment, time dedicated to treatment, change in body image related to the vascular access and growth,stigma, self-care and hope of kidney transplantation. CONCLUSION: Relevant aspects to the participants' experience regarding the disease and the treatment were apprehended, trying to understand how this process is associated to quality of life.

[Children and adolescents with cancer under palliative care: experience of family members]. / Criancas e adolescentes com cancer em cuidados paliativos: experiencia de familiares.

This study's objective was to investigate the experience of family members of children and adolescents with cancer in terms of palliative care, especially the care provided in the final stage of life. This is a descriptive and exploratory study with qualitative data analysis. A total of 14 family members participated in the study. They were the caregivers of children and adolescents with cancer who died, and were followed up by a teaching hospital in the state of São Paulo. Empirical data were organized around three themes: "The impact of the worsening of the disease on the family's dynamics", "Communicating bad news" and "The experience of the family concerning palliative care". This study is relevant to children and adolescents with cancer in the end-of life care because the complex, dynamics, and comprehensive experiences of families in the care of children and adolescents in this period can contribute to better understanding of the process of providing care in light of the fundamentals of palliative care.

[Playful strategies for data collection with child cancer patients: an integrative review]. / Estratégias lúdicas de coleta de dados com crianças com câncer: revisão integrativa.

Children are the best sources of information on their experiences and opinions, and qualitative studies have favored the development and application of techniques that facilitate their self-expression and approaching the researcher. Through an integrative literature review, the objective of this research was to identify playful resources used in qualitative research data collection with child cancer patients, and their forms of application. Systemized searches of electronic databases and a virtual library were undertaken, which, combined with a non-systemized sample, totaled 15 studies spanning the period from 2000 and 2010. Drawing, toys, puppets, photography and creativity and sensitivity dynamics were identified which, in association with interviews or not, were shown to directly or indirectly facilitate data collection, thereby broadening the interaction with the children, and permitting further expression of their feelings. The advantages and limitations of using these resources are presented thus contributing to planning research with children.