"God gives me hope!": Hospitalized children's perception of the influence of religion in coping with chronic illness.

PURPOSE: The mechanism of the impact of religion on health is still unclear, especially in children and adolescents with chronic illness who live in religious contexts. This study aimed to understand the influence of religion on coping with chronic diseases from the perspective of hospitalized children and adolescents diagnosed with cancer, type 1 diabetes mellitus and cystic fibrosis. DESIGN AND METHODS: Qualitative descriptive research used photo-elicitation interviews with 35 Brazilian children and adolescents with cancer, type 1 diabetes mellitus and cystic fibrosis, aged between 7 and 17 years old. A thematic analysis approach was used to analyze qualitative data. RESULTS: Participants were diagnosed with cystic fibrosis (14.3%), cancer (57.1%), and type 1 diabetes mellitus (28.6%) and 82.9% had a religious affiliation. Three themes were constructed: finding strength and support in the relationship with the divine, religion as an important source of meaning, and religious practice as a promoter of well-being. These themes demonstrate that children and adolescents themselves perceived their illness as a journey through which their faith grew. CONCLUSIONS: This research shows the influence of religion on the positive coping of chronic illness, being a source of strength and support from the relationship with the divine, as well as offering a source of meaning, purpose and well-being based on religious practices. PRACTICE IMPLICATIONS: This study supports clinical practice, based on the recognition of the patient as a religious and spiritualized person who has spiritual beliefs and needs that are capable of influencing treatment.

Functioning of structurally diverse families living with adolescents and children with chronic disease: A metasynthesis.

PURPOSE: The diagnosis of children and adolescents with a chronic disease may affect the entire family system. When families have diverse structures, additional tensions can be present and affect the balance of family functioning. This metasynthesis aims to analyze and synthesize qualitative evidence on the functioning of structurally diverse families who live with adolescents and children with chronic disease. DESIGN: Qualitative metasynthesis. METHODS: Systematic searches up to 2021 were performed in PubMed, CINAHL, PsycINFO, SCOPUS, LILACS, and Web of Science and supplemented by manual search strategies. It followed guidelines from the statement in the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A quality appraisal of each study was undertaken using the Critical Appraisal Skills Programme. Data synthesis was conducted according to the thematic synthesis approach. FINDINGS: Of a total of 6538 references identified, 9 studies were included in the metasynthesis. The thematic synthesis enabled the construction of three analytical themes: "Family structural changes and weakened co-parenting"; "Family rearrangements and the challenges faced by families"; and "Committed to healthy family functioning for the child's well-being: Searching for family homeostasis". CONCLUSIONS: The themes showed that the causes of the rupture in the family unit interfere in family functioning, making it ineffective. In most families, family functioning is centered on the mothers. Faced with the need to care for children and adolescents and to control chronic disease, structurally diverse families need to adjust their family functioning and search for family homeostasis. CLINICAL RELEVANCE: The results of this review can support nurses to target their care toward these families and formulate effective interventions that promote, strengthen, or maintain the healthy functioning of these families.

School reintegration of children and adolescents with chronic illness from the mothers' perspective: A qualitative study.

INTRODUCTION: The diagnosis of chronic illness in childhood implies frequent hospitalizations and, consequently, the interruption of school attendance. This study aimed to understand the process of school reintegration of children and adolescents with chronic illness from the mothers' perspective. METHOD: A qualitative descriptive-exploratory study was conducted with mothers who experienced the process of school reintegration of their child or adolescent, aged between 8 and 17 years old, and diagnosed with chronic illness. The participants were recruited by convenience and interviewed at the paediatric unit of a children's hospital. Data collection was interrupted when the data set was sufficient to answer the research question. The interviews were analysed using inductive thematic analysis. The study was approved by the research ethics committee. RESULTS: Eleven interviews were conducted, 10 with mothers and one with a grandmother, who played the maternal role. Participants' age ranged between 33 and 58 years old. A theme was developed-"School reintegration under the maternal vigilance"-which encompasses four subthemes: (1) What matters? My child's health comes first; (2) How to keep in touch with the school? (3) Back to the school: Are we ready? (4) Sharing vigilance: reality and expectations. The themes highlighted a cyclical, dynamic, and subjective school reintegration process, constantly permeated by maternal vigilance. CONCLUSION: A new understanding about school reintegration was evidenced, from the perspective of mothers of children and adolescents with different chronic illnesses. Mothers and children experience a nonlinear and recurrent process of leaving and returning to school, surrounded by a lack of communication and continuity in school activities. The results of this study may assist health professionals in planning care focused on the needs of the school reintegration of this population.

Spiritual Needs of Brazilian Children and Adolescents with Chronic Illnesses: A Thematic Analysis.

PURPOSE: To identify the spiritual needs of children and adolescents with chronic illnesses and how these needs are met by health professionals during hospitalization. DESIGN AND METHODS: A qualitative descriptive study was developed with 35 children and adolescents, between 7 and 18 years old, diagnosed with cancer, cystic fibrosis, and type 1 diabetes. Interviews with photo-elicitation were conducted during the hospitalization at a Brazilian public pediatric hospital. Findings were treated using thematic analysis, and the Consolidated Criteria for Reporting Qualitative Research (COREQ) was followed for quality reporting. This research was approved by a research committee. RESULTS: Two themes emerged. The first, entitled 'Spiritual needs', encompasses five types of needs: (1) need to integrate meaning and purpose in life; (2) need to sustain hope; (3) need for expression of faith and to follow religious practices; (4) need for comfort at the end of life; and (5) need to connect with family and friends. The second theme was the 'Definition of spiritual care'. CONCLUSIONS: Children and adolescents with chronic illnesses have spiritual needs while in hospital. Meeting these needs is essential for finding meaning, purpose and hope in the experience of living with chronic illnesses and at the end of life, based on their faith, beliefs and interpersonal relationships. But, these needs have not been fully addressed during hospitalization. PRACTICE IMPLICATIONS: These results emphasize the need to implement spiritual care when caring for hospitalized pediatric patients, which includes addressing spiritual needs.

Understanding the spirituality of parents following stillbirth: A qualitative meta-synthesis.

This meta-synthesis aims to synthesize qualitative evidence from primary studies to better understand the experience of the spirituality of parents and its relationship to adapting following stillbirth. Five electronic databases were systematically searched and the quality of 21 eligible studies was critically appraised. A thematic synthesis revealed two analytical themes: (1) Spiritual suffering following stillbirth; (2) Moving through spirituality to adapt to the loss, each encompassing four descriptive themes. The findings can inform a more culturally and spiritually sensitive approach to care, taking into account the parents' beliefs, folk customs, religion, values, and spiritual needs.

The experience of hope in families of children and adolescents living with chronic illness: A thematic synthesis of qualitative studies.

AIM: To synthesize qualitative studies on the experience of hope in families of children and adolescents living with chronic illness. BACKGROUND: Hope is multidimensional, dynamic, and varies according to experienced events, cultural environments and stage of life. The qualitative synthesis of the experience of hope in the paediatric population with chronic conditions is scarce. DESIGN: Thematic synthesis of qualitative studies. DATA SOURCES: A systematic literature search in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science was performed supplemented by manual search strategies. Thirty-one studies from fifteen countries, published between 1981-2018, were included. FINDINGS: Findings were integrated into an analytical theme "FAMILY HOPE: KEEPING THE DAY-TO-DAY BALANCE", encompassing the following five descriptive themes: Uncertainty; Support; Information; Between "dark thoughts" and positive thoughts; and Hoping to go back to normality. CONCLUSION: This thematic synthesis brings a new dimension of hope among families of children and adolescents living with chronic illness. "Family Hope" highlights the influence of the relationships between relatives and the chronically ill child in the balance of hope. It is recommended that health professionals use a family-focused approach to support these families. IMPACT: Shifting the focus to a family dimension of hope is a promising pursuit that has the potential to inform future nursing practices to support the experiences of families living with chronic illness in the paediatric context. A better understanding of the role and characteristics of family hope will promote the development of more effective interventions for families to adapt to long-term paediatric conditions.

Children in outpatient follow-up: perspectives of care identified in interviews with puppet. / Crianças em seguimento ambulatorial: perspectivas do atendimento evidenciadas por entrevista com fantoche.

OBJECTIVE: To analyze the perspective of children on their health condition and experiences related to outpatient hospital care and the use of the puppets as a playful strategy to collect data. METHOD: A qualitative study with 16 children diagnosed with chronic diseases recruited in a pediatric outpatient clinic in countryside of Sao Paulo. Data were collected in October 2016 using a semi-structured interview and a puppet to facilitate communication. The interview transcripts were subjected to inductive thematic analysis. RESULTS: We constructed four themes: "Children in ambulatory follow-up: what do they know?"; "Emotions manifested in outpatient follow-up"; "The outpatient clinic of my dreams" and; "The use of puppets and the playful universe of interviews". FINAL CONSIDERATIONS: We identified the reasons and main feelings experienced during outpatient care, as well as the children's preferences regarding the physical and structural aspects of the outpatient clinic.

Systematic review of the psychometric properties of instruments to measure sexual desire.

BACKGROUND: Sexual desire is one of the domains of sexual function with multiple dimensions, which commonly affects men and women around the world. Classically, its assessment has been applied through self-report tools; however, an issue is related to the evidence level of these questionnaires and their validity. Therefore, a systematic review addressing the available questionnaires is really relevant, since it will be able to show their psychometric properties and evidence levels. METHOD: A systematic review was carried out in the PubMed, EMBASE, PsycINFO, Science Direct, and Web of Science databases. The search strategy was developed according to the following research question and combination of descriptors and keywords, including original studies with no limit of publication date and in Portuguese, English, and Spanish. Two reviewers carried out the selection of articles by abstracts and full texts as well as the analysis of the studies independently. The methodological quality of the instruments was evaluated by the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. RESULTS: The search resulted in 1203 articles, of which 15 were included in the review. It identified 10 instruments originally developed in the English language. Unsatisfactory results on methodological quality were evidenced in cultural adaptation studies with no description of the steps of the processes and inadequacy of techniques and parameters of adequacy for models. The Principal Component Analysis with Varimax rotation predominated in the studies. CONCLUSIONS: The limitation of the techniques applied in the validation process of the reviewed instruments was evident. A limitation was observed in the number of adaptations conducted and contexts to which the instruments were applied, making it impossible to reach a better understanding of the functioning of instruments. In future studies, the use of robust techniques can ensure the quality of the psychometric properties and the accuracy and stability of instruments. A detailed description of procedures and results in validation studies may facilitate the selection and use of instruments in the academic and/or clinical settings. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018085706.

The social network and support of kidney transplantees. / A rede e apoio social do transplantado renal.

OBJECTIVE: to know the social network and support of those who experience the process of kidney disease and transplantation. METHODS: a descriptive qualitative study, based on the concept of social network and social support from Sherbourne and Stewart. Semi-structured interviews were conducted from November 2013 to September 2014, with 12 kidney transplantees, which passed through content analysis. This study had the following selection criteria: the interviewee must have had a transplant five years ago, at most, be at lease 16 years of age and have preserved cognitive and language skills. RESULTS: three categories were constructed from the analysis process that link the family as the main component of the social network, health service offers support in its various dimensions, even if it is occasionally disconnected; other interpersonal relationships are mentioned as vulnerable in this process; spirituality helps in coping. CONCLUSIONS: despite the different forms of support for transplantees, weaknesses were observed in these networks and social supports.

[Experience of family members providing care for HIV-exposed children: beginning of the trajectory]. / Experiência de familiares no cuidado à criança exposta ao HIV: o início da trajetória.

During and after pregnancy, mothers with HIV can undergo treatment that is capable of preventing vertical transmission (VT) to their babies. The purpose of this study was to analyze the experience of family members that provide care for children whose mothers have HIV, to reduce the risk ofVT, with emphasis on the beginning of this trajectory. This study was based on the qualitative approach and Symbolic Interactionism was adopted as a theoretical framework. A total of 36 family members participated in the study, all of whom were carers of children aged up to 18 months and waiting for confirmation of the HIV diagnosis. Data were collected in a hospital in north-eastern Brazil, between December 2012 and February 2013, and examined by means of content analysis. Child care began during pregnancy, when the possibility of the child having HIV was expected. Some had previous experience in providing care for exposed children. Understanding the early trajectory of care will help find ways to provide better support for carers during the trajectory of diagnosis confirmation.

Elements of fatherhood involved in the gestational period: a scoping review.

OBJECTIVE: To identify in the literature and summarize the elements and characteristics of fatherhood involved during pregnancy. METHOD: Scoping review that used PRISMA-ScR guide to report this review. Searches were carried out in PubMed, CINAHL, PsycInfo, LILACS and Scopus. Google search engines and public health agency websites assisted in searches of gray literature and Rayyan in screening studies. RESULTS: A total of 406 articles were identified, of which 16 made up the final sample. Five elements make up an involved fatherhood: feeling like a father, being a provider and protector, being a partner and participant in pregnancy, participating in prenatal appointments and feeling prepared to take care of a baby. CONCLUSION: Fathers want to be involved in prenatal care, but feel excluded from this process. Public policies that encourage paternal involvement and healthcare professional training to better welcome and promote paternal involvement are of paramount importance.

Compassion Fatigue: A Comprehensive Discussion on its Development and Repercussions Among Oncology Nurses.

OBJECTIVES: This study aimed to discuss how compassion fatigue (CF) develops and its repercussions on the personal and professional lives of oncology nurses. METHODS: A discursive article, with systematic searches were performed in seven databases to find publications on CF in oncology nurses. RESULTS: So as to better organize the findings, three categories were developed to present and discuss issues related to CF: (1) Characteristics of CF and its developments: describes the components related to CF and the manifestation of this phenomenon; (2) Repercussions of compassion fatigue: reports on the impact of CF on the personal and professional life of oncology nurses; and (3) Resources for dealing with compassion fatigue: lists interventions, sources of support, professional personal training, qualified nursing care in the face of adversity, and gratitude and recognition. CONCLUSION: the factors that trigger or protect CF are multifactorial, with the need for collective and individual interventions as a way of helping oncology nurses to protect themselves, to avoid or manage this phenomenon. CF has a direct clinical impact on the life of the oncology nurse, causing several changes. It also indirectly impacts the patient's life clinically, as it is a phenomenon that has repercussions on the provision of care. IMPLICATIONS FOR NURSING PRACTICE: CF affects the personal and professional lives of oncology nurses, so nurses need to seek resources to deal with it. Nursing staff employers and managers can use the evidence from this research to help nurses manage and protect themselves from compassion fatigue.

Development of a comprehensive flourishing intervention to promote mental health using an e-Delphi technique.

Background: Although observational studies have already shown promising results of flourishing, a broader concept of health based on positive psychology, there is still a gap in the literature regarding studies that combine different topics of flourishing in a single intervention. Objectives: To develop a comprehensive and integrate intervention based on positive psychology gathering different topics of flourishing to improve mental health outcomes in individuals with depressive symptoms. Methods: The following steps were performed: (1) a comprehensive literature review; (2) the designing of a 12-session group intervention based on the values, virtues, and topics of flourishing; (3) assessment of the rationale, coherence, and feasibility by a panel of healthcare professionals answering semi-structured questions, and (4) application of an e-Delphi technique including mental health experts to reach a consensus of at least 80% for each item of the protocol. Results: A total of 25 experts participated in the study, 8 in the panel with semi-structured questions and 17 in the e-Delphi technique. A three-round e-Delphi technique was required to reach a consensus for all items. In the first round, a consensus was reached for 86.2% of the items. The remaining items (13.8%) were either excluded or reformulated. In the second round, a consensus was not obtained on one item, which was reformulated and approved in the third round. Qualitative analyses of the open questions were performed and suggestions for the protocol were considered. The final version of the intervention was composed of 12 weekly group sessions with 90-min each. The topics included in the intervention were physical and mental health, virtues and character strengths, love, gratitude, kindness, volunteering, happiness, social support, family, friends and community, forgiveness, compassion, resilience, spirituality, purpose and meaning of life, imagining the "best possible future," and flourishing. Conclusion: The flourishing intervention was successfully developed using an e-Delphi technique. The intervention is ready to be tested in an experimental study to verify its feasibility and effectiveness.

Construction and validity of educational technology in audiovisual media on premature newborn care.

OBJECTIVES: to construct and validate an educational video storyboard about care for premature newborns at home. METHODS: a methodological study, with the construction of an educational video storyboard, validated with 14 judges. Content was selected from scoping review. For data collection, a validated instrument was used. The criterion for validity was agreement greater than 80%, analyzed using the Content Validity Index. RESULTS: the storyboard construction was guided by the Cognitive Theory of Multimedia Learning theoretical framework. Construction and validity took place from May to December 2020. The storyboard's final version lasted 10 minutes, and was validated in terms of objective, structure, presentation and relevance, with a Content Validity Index of 0.9. CONCLUSIONS: the storyboard of the educational video proved to be valid and adequate for health promotion in developing care for premature newborns at home.

Parental psychosocial needs in Brazilian paediatric intensive care units.

BACKGROUND: Having children admitted in the intensive care unit is a demanding experience for parents. They encounter several difficulties during this process, and it is important to properly identify their psychosocial needs for the health team to address appropriately. OBJECTIVE: The aim of the study is to identify the psychosocial needs encountered by parents of children in pediatric intensive care units in Brazil. METHODS: A descriptive study with a qualitative approach was used to increase understanding of psychosocial experiences of parents. Individual semi-structured interviews were conducted with 11 parents of hospitalized children in pediatric intensive care units in Brazil. Thematic analysis was used to analyze the data. The university ethics review committee approved the research protocol. All parents were informed on study details and provided written consent prior to the interview. RESULTS: Four themes were constructed: 1) Support from family and peers; 2) Support from the healthcare team; 3) Parental role; and 4) Emotional recovery. Parents expressed diverse psychosocial needs based on family and peer social support, child's clinical condition, as well as the structure, norms, and routines of health care teams during hospitalization. CONCLUSIONS: The findings highlight the importance of nursing assessment of psychosocial experiences encountered by parents of children in pediatric intensive care units, which will guide planning of individualized interventions and to increase family-centered care in pediatric intensive care units.

Evidence of validity of internal structure of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions.

This study explored the evidence of validity of internal structure of the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions. The study involved 301 Brazilian adolescents with cancer, type 1 diabetes mellitus, or cystic fibrosis. Exploratory Factor Analysis (EFA), Confirmatory Factor Analysis (CFA), and Item Response Theory (IRT) were used to test the internal structure. Reliability was determined with Cronbach's Alpha and McDonald's Omega. The EFA suggested a one-dimensional scale structure in contrast to the original 2-factor model or the 3-factor model which were not reproduced in the current CFA. All quality indicators for the EFA one-factor exceeded the required criteria (FDI = 0.97, EAP = 0.97, SR = 3.96 and EPTD = 0.96, latent GH = 0.90. and the observed GH = 0.85). The FACIT-Sp-12 for adolescents yielded strong evidence for a 1-factor model and with good reliability.

Management of chemotherapy-related symptoms in children and adolescents: family caregivers' perspectives.

OBJECTIVE: To describe the chemotherapy-associated symptoms and the strategies used for their management from the perspective of pediatric cancer patients' family caregivers. METHODS: This is a descriptive study with qualitative data analysis. Data collection took place in a pediatric hospital, from December 2017 to December 2018, with family caregivers of pediatric patients undergoing chemotherapy. Semi-structured interviews, subjected to inductive content analysis, were carried out. Concepts from the Symptom Management Theory were used to discuss the results. RESULTS: Eighteen family caregivers participated. The participants mentioned: physical symptoms, especially weakness, alopecia, low immunity, pain, mucositis, constipation, nausea, and vomiting; emotional or psychosocial symptoms such as sadness and mood changes; and constitutional symptoms such as loss of appetite and fever. Pharmacological and non-pharmacological measures were mentioned in the management of symptoms and adverse effects. CONCLUSION: Participants demonstrated skills to identify and manage symptoms of chemotherapy. Knowing the experience of these families can help nurses in planning care and interventions to minimize these events.

How to Talk to Children and Adolescents With Cancer About Spirituality? Establishing a Conversation Model.

Talking to children and adolescents with cancer about spirituality is a challenge. This study aimed to develop and evaluate a conversation model for a spiritual approach with children and adolescents with cancer. It was a methodological study with a systematic approach in three stages: (a) review of the literature for the selection of photographs and guiding questions, (b) using an expert committee to evaluate photographs and preselected questions, and (c) cognitive interview with children and adolescents to test the methodology. The expert committee evaluated and selected 20 photos and their respective guiding questions. Fifteen children and adolescents hospitalized with cancer tested the spirituality conversation model and expressed feelings, values, beliefs, fears, and the meaning they give to life and illness. The implementation of the conversation model can contribute both to the clinical practice, facilitating care for the spiritual dimension of pediatric patients, and to qualitative research on spirituality involving children.

Adaptation and preliminary validation of the genetic counseling outcome scale (GCOS-24) in a Brazilian genetic counseling setting.

Health professionals working in services providing genetic counseling need objective instruments to assess genetic counseling outcomes and also to "give a voice" to those using these services. Lack of knowledge regarding such outcomes may directly impact the effectiveness and the potential benefits of counseling, quality of life, health promotion, and empowerment of those receiving counseling. There are very few instruments available for most countries, however there are none in Brazil. In this context, this study aimed to adapt and preliminarily validate the Genetic Counseling Outcome Scale (GCOS-24), a Patient-Reported Outcome Measure (PROM), originally developed in British English. This methodological study recruited 278 individuals attending a medical genetic service at a Brazilian university hospital. We performed the translation, back-translation, semantic validation, pilot study and field study for testing of some psychometric properties. The instrument's internal consistency and test-retest reliability (stability) were assessed using Cronbach's alpha coefficient and Intraclass Correlation Coefficient, respectively. The Brazilian version of the GCOS-24 presented face and content validity, satisfactory internal consistency (Cronbach's α = 0.71), and moderate stability (ICC = 0.52). It was considered reliable, easily understood and relevant to assessing the genetic counseling outcomes for the study participants. Its construct validity still needs to be assessed to verify the instrument's internal structure and its potential use to measure change in empowerment following genetic counseling provided by Brazilian clinical genetics services.

The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis.

This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.