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.

Body image experience of women with breast cancer: A meta-synthesis.

BACKGROUND: Body image is a multidimensional concept that involves the mental image of the human body and the feeling of being oneself throughout existence. Treatment for breast cancer causes several bodily changes that affect women's body image. AIMS: This meta-synthesis aims to synthesise and interpret primary qualitative studies on the experience of body image in women undergoing treatment for breast cancer. METHODS: A qualitative meta-synthesis was conducted employing systematic searches in six databases (PubMed, CINAHL, SCOPUS, Web of Science, PsycINFO, and LILACS). Data analysis was performed according to thematic synthesis. RESULTS: Forty studies were included. Five descriptive themes were identified: (1) actively saying goodbye to body image; (2) the rupture of body image; (3) the sacrifice of body image in exchange for life; (4) body image as a vehicle for social expression; and (5) resignation of the alterated body image. These themes were understood through one analytical theme: Half-woman: body image of the woman with breast cancer. CONCLUSION: The experience of body image in the context of breast cancer is a dynamic phenomenon, which involves dismissal, rupture, and resignation and occurs mediated by interpersonal contact.

Use of continuous subcutaneous insulin infusion in children and adolescents with type 1 diabetes mellitus: a systematic mapping review.

BACKGROUND: Among the treatments for type 1 diabetes mellitus (T1DM), Continuous Subcutaneous Insulin Infusion (CSII) is a device that infuses insulin through the subcutaneous tissue in an uninterrupted manner and that comes closest to the physiological secretion of insulin. The use of CSII can provide the family with greater security and children and adolescents have more autonomy in relation to the treatment of T1DM. There is a lack of reviews that systematically gather the mounting evidence about the use of CSII in children and adolescents with T1DM. Therefore, the aim of this review was to group and describe primary and secondary studies on the use of CSII in children and adolescents with T1DM. METHODS: A systematic mapping review was performed based on searches in the following databases: PubMed, Embase, CINAHL, Lilacs and PsycINFO, using a combination of descriptors and keywords. The screening of the studies was carried out with the aid of the Rayyan software and reading in full was conducted independently by two reviewers. The data extraction of the studies was performed using an extraction tool adapted and validated by researchers specialized in diabetes. The data were analyzed according to the content analysis technique. The map from geocoding of the studies was produced using the ArcGis 10.5 software. RESULTS: A total of 113 studies were included in the review, including primary studies, literature reviews and gray literature publications. The content analysis of the results of the studies allowed for the identification of four categories: 1) metabolic control; 2) support networks; 3) benefits of using CSII; and 4) challenges of using CSII, each category having its respective subcategories. The review also made it possible to conduct a rigorous mapping of the literature on the use of CSII considering the location of development and the design of the studies. CONCLUSIONS: The use of CSII should be indicated by health professionals able to prepare children, adolescents, and their families for the treatment of T1DM, and, despite being a technological device, it may not be suitable for the entire pediatric population.

Searching for a harmonious survival: the experience of quality of life of urological cancer survivors.

PURPOSE: This study aimed to analyze the experience of quality of life for urological cancer survivors. METHODS: This is a qualitative narrative research based on the experience-centered approach. Twenty-one semi-structured face-to-face interviews were conducted with 12 survivors of urological cancer at different survival seasons. Participants were recruited from the convenience sampling. The thematic analysis approach was used to analyze the data. The findings are presented as narrative syntheses. The standards for reporting qualitative research (SPQR) were used in this study. RESULTS: Two narrative syntheses were constructed: (1) Rupture in the different dimensions of QoL; and (2) QoL: Searching for a harmonious survival, each presenting their respective sub-themes. After the rupture in the different dimensions of QoL, the survivors resigned themselves and searched for a harmonious survival despite the physical, social, and psychological changes imposed by cancer treatments. Survivors achieved a new meaning of QoL with the support of family, hope, and spirituality. CONCLUSIONS: The results highlight the changes experienced by survivors in different dimensions of QoL and the search for harmonious survival. Based on QoL experience reported in this study, health professionals can plan survival care and interventions that mitigate the consequences of treatment on QoL.

The experience of health-related quality of life in extended and permanent cancer survivors: A qualitative systematic review.

OBJECTIVE: This qualitative systematic review aims to synthesize qualitative evidence from primary studies on experiencing health-related quality of life (HRQoL) in extended and permanent cancer survivors. METHODS: A systematic literature search was performed in PubMed, CINAHL, LILACS, PsycINFO, Scopus, and Web of Science. 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. Confidence in each review finding was assessed using the Confidence in the Evidence from Reviews of Qualitative research (Grade-CERQual). RESULTS: Twenty-four studies from nine countries were selected for the final sample. Analysis of the studies' results allowed for the construction of nine descriptive themes that were interpreted into three analytical themes: "The body as a representation of HRQoL," "Living through and beyond cancer: the re-signification of HRQoL," and "Employing resources to improve HRQoL." According to the CERQual approach, moderate confidence estimations were achieved for the results. CONCLUSIONS: The themes reflect that the HRQoL experience is re-signified by survivors from the privilege of being alive. This process happens with the support of social resources, family, hope, and spirituality. Based on the findings, it is suggested that health staff should be able to recognize the impact that cancer survival has on HRQoL and develop a care plan that addresses needs to sustain health in these survivors.

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.

[Experience of spouses of women with breast cancer: an integrative literature review]. / Experiência dos cônjuges de mulheres com câncer de mama: uma revisão integrativa da literatura.

OBJECTIVE: To gather, to characterize, to analyze, to synthesize and to integrate primary studies that addressed the experiences of spouses / husbands / partners of women with breast cancer, presenting the current state of knowledge. METHOD: Integrative literature review carried out in the databases of VHL, PubMed, CINHAL e SciELO. RESULTS: The sample consisted of eight studies published between 2000-2012, which pointed to the experiences of the involvement and the care of the husbands towards their ill wives. CONCLUSION: This study highlights the need for attention and assistance to those spouses, as well as guidance and education to exercise the care the same way as the health staff has done with women. Furthermore, it emphasizes the importance of further studies in order to deepen the knowledge on this topic, and thus, improve the care with better scientific basis.

Experience of hope in older people with chronic illness: A meta-synthesis.

BACKGROUND: The increase in life expectancy has contributed to an increase in the number of older people, but this population has to learn to live with at least one chronic illness. Thus, hope has become an important resource for the older adult to face the repercussions of chronic illness. OBJECTIVE: To synthesise qualitative evidence on the experience of hope in older people with chronic illness. METHODS: This meta-synthesis included qualitative studies which present the experiences of hope in older people diagnosed with at least one chronic illness. The searches were made from six databases, guided by the SPIDER tool. The identified articles were then independently screened by two reviewers. The results were analysed according to the thematic synthesis approach. RESULTS: Eighteen articles were included, and four analytical themes were constructed. The results allow us to understand that older people live with long-term conditions and hope for an ordinary life. To react to new changes and to maintain hope, they create goals that motivate them in daily life. The treatment is initially seen as a salvation, but the information acquired with the evolution of the illness modifies this perception. In addition, the uncertainty about the success of the treatment creates conflict in their hope. In the support and care of older people in the new context of illness, meaningful relationships strengthen hope most of the time. There is still the hope of being reconciled with death, but there are times when suffering overcomes the hope of living. CONCLUSIONS: This meta-synthesis highlights that the experience of hope in older people is dynamic and influenced by the context of changes related to illness, treatment, significant relationships and proximity to death. IMPLICATIONS FOR PRACTICE: A better understanding of the role and characteristics of hope in older people with chronic illness may help to develop more effective interventions to promote and maintain hope.

Extended and Long-term Cancer Survivorship of Childhood Survivors: A Scoping Review of Nursing Evidence With Bibliometric Analysis.

BACKGROUND: With the increasing survival rates of childhood cancer, nurses' familiarity with published evidence has become crucial to care for this population and their families throughout the survival process. OBJECTIVE: To systematically identify and conduct a bibliometric analysis of nursing-related evidence concerning extended and long-term survival of childhood survivors. METHODS: A scoping review was conducted using bibliometric analysis with searches performed in the PubMed, CINAHL, SCOPUS, and Web of Science databases. A total of 300 studies on childhood cancer survival within the nursing field were included. RESULTS: The first study on this topic was published in 1975. American and Chinese researchers lead study publications, primarily publishing in nursing journals such as Cancer Nursing. Quantitative designs were prevalent, and the majority of the studies focused on physical late effects, overall quality of life, and survivor follow-up care. CONCLUSIONS: This study has allowed us to map and synthesize the bibliometric evidence pertaining to the extended and long-term survivorship of childhood cancer survivors in the nursing field. Consequently, it identifies gaps in knowledge, research trends, and areas necessitating further exploration. IMPLICATIONS FOR PRACTICE: The evidence presented in this review can facilitate academic and clinical discussions, offering a comprehensive synthesis of the published knowledge. More research needs to be developed on the topic, particularly in Central and Latin America, Africa, Southern and Eastern Europe, and in some regions of Asia. Furthermore, the scope of studies should extend beyond late effects and quality of life, encompassing the experience of surviving childhood cancer, including psychosocial and spiritual dimensions.

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.

"Times of war and time of uncertain peace": Narratives of parents of childhood cancer survivors.

OBJECTIVE: to analyze the meaning attributed by parents to the extended and permanent survival of childhood cancer. METHOD: qualitative narrative inquiry, developed with parents of adolescents and young adults who survived childhood cancer. Recruitment and data collection involved virtual and in-person approaches. The data were collected through semi-structured interviews. Data were analyzed according to reflective thematic analysis. RESULTS: a total of ten parents were included in the study. Two thematic narrative syntheses were constructed: "Times of war"; and "Time of uncertain peace", with their respective sub-themes. The cancer diagnosis marks the beginning of times of war in the parents' lives. They experience cancer treatment as "highs and lows" with potential threats to their children's lives. After that, "Time of uncertain peace" are reached, and the balance of the family unit is reestablished. However, the fear of recurrence makes the family peace uncertain, and its maintenance requires constant vigilance and attention to the signs and symptoms of a possible new battle. CONCLUSION: the results highlight the experience of being a parent of a childhood cancer survivor and can be applied to develop models of care centered on the survivors' family.

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.

The Sleep Patterns of Children and Adolescents with Chronic Conditions and Their Families: An Integrative Literature Review.

Sleep is of vital necessity for health, and it has a restorative and protective function for children and adolescents with chronic conditions and their families. The purpose of this study was to identify the scientific production on sleep patterns in children and adolescents with chronic conditions and their families. This integrative review was conducted between March and June 2022 using the databases of MEDLINE, Web of Science, CINAHL and PsycINFO. The articles included were original papers published between January 2007 and mid-2022. Excluded were review studies that did not evaluate sleep and whose participants did not have chronic conditions or were not children, adolescents and/or their families. The searches returned 814 abstracts. After exclusions, 47 studies were selected to be read in full; of these, 29 were selected and were grouped empirically into four categories: major alterations in the sleep patterns of children and adolescents with chronic conditions; the relationship between sleep disorders and symptoms in children and adolescents with chronic conditions; the impaired sleep patterns of families of children and adolescents with chronic conditions; and sleep alterations and their relationship with other problems in families of children and adolescents with chronic conditions. All studies showed sleep pattern impairment in children and adolescents with chronic conditions as well as their families.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations.

OBJECTIVE: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. METHOD: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. RESULTS: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. CONCLUSION: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

(Re)Establishment of fatherhood among fathers of children with mental disorders: A qualitative metasynthesis.

This metasynthesis synthesized and interpreted qualitative research results on the experience of fathers who care for children with mental disorders. It followed the guidelines from the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement. A search was conducted in five databases. The Critical Appraisal Skills Programme qualitative research checklist was used to evaluate the quality of the studies, and the Confidence in the Evidence from Reviews of Qualitative Research (Grade-CERQual) approach was used to assess review findings. Thematic analysis of 12 articles included yielded the theme (re)establishment of fatherhood and four subthemes: redefinition of expectations, redefinition of the fatherhood role, benefits achieved with increased father involvement, and strengths and challenges in fatherhood, all of which demonstrated how repercussions from diagnosis and redefinition of expectations of masculinity and fatherhood affected the way fathers exercise fatherhood. Fathers were participative and attentive to their child's needs, even in a challenging context demanding integration of care with work obligations. This metasynthesis highlights challenges faced by fathers in acquiring new skills and competencies while caring for their children. The findings identify a need for interventions to facilitate fathers' involvement in caring for their children.

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.

Childhood cancer survival: Emerging reflections on pediatric oncology nursing. / Sobrevivência ao câncer infantojuvenil: reflexões emergentes à enfermagem em oncologia pediátrica.

The aim of this study is to analyze and critically reflect on childhood cancer survival, including conceptual aspects, repercussions, survival care, and challenges. This is a theoretical and reflective study, based on the scientific literature on the subject and on the researchers' experience. Childhood cancer survival is conceptualized as the process of living beyond the oncological diagnosis. A person is considered a cancer survivor from the diagnosis until the end of life and is at high risk of experiencing physical, psychosocial, and economic effects. Therefore, survival care shall minimize, as far as possible, these impacts throughout life. Such care includes an action plan to track and treat the persistent effects of therapy, preventing diseases and promoting healthy behaviors, not being restricted to monitoring oncological recurrence. In the national setting, challenges persist, such as the scarcity of policies to guide comprehensive, good quality, and coordinated survival care. Despite these challenges, the nurse occupies a privileged position and is competent to implement survival care and manage the effects related to cancer treatment.

O objetivo deste estudo é analisar e refletir criticamente sobre a sobrevivência ao câncer infantojuvenil, incluindo aspectos conceituais, repercussões, cuidados de sobrevivência e desafios. Estudo teórico e reflexivo, fundamentado na literatura científica sobre a temática e na experiência dos pesquisadores. A sobrevivência ao câncer infantojuvenil é conceituada como o processo de viver além do diagnóstico oncológico. Uma pessoa é considerada sobrevivente de câncer desde o diagnóstico até o final da vida e tem risco elevado de desenvolver efeitos físicos, psicossociais e econômicos. Portanto, cuidados de sobrevivência devem minimizar, na medida do possível, essas repercussões ao longo da vida. Esses cuidados incluem um plano de ações para rastreamento e tratamento dos efeitos persistentes da terapêutica, prevenção de doenças e promoção de comportamentos saudáveis, não se restringindo ao monitoramento da recorrência oncológica. No contexto nacional, desafios persistem, como a escassez de políticas que orientem os cuidados de sobrevivência de qualidade, abrangentes e coordenados. Apesar destes desafios, o enfermeiro ocupa posição privilegiada e é competente para implementar cuidados de sobrevivência e gerenciamento dos efeitos relacionados ao tratamento oncológico.

El objetivo de este estudio es analizar y reflexionar críticamente acerca de la supervivencia al cáncer infantojuvenil sobre todo en los aspectos conceptuales, repercusiones, cuidados de supervivencia y desafíos. Se trata de estudio teórico y reflexivo sobre el tema con fundamentación en la literatura científica y en la experiencia de los investigadores. La supervivencia al cáncer infantojuvenil se define como el proceso de vivir más allá del diagnóstico oncológico. A uno se le considera superviviente de cáncer desde su diagnóstico hasta el final de su vida con riesgos elevados de desarrollar efectos físicos, psicosociales y económicos. Por lo tanto, cuidados de supervivencia deben minimizar, cuando posible, esas repercusiones a lo largo de la vida. Esos cuidados incluyen un plan de acciones para búsqueda y tratamiento de los efectos persistentes de la terapéutica, prevención de enfermedades y fomento de comportamientos sanos, sin restricción del monitoreo de la recurrencia oncológica. En el contexto nacional persisten desafíos como la escasez de políticas que orienten los cuidados de supervivencia con calidad y que sean amplios y ordinados. A pesar de ello, el enfermero ocupa posición privilegiada y es competente para implementar cuidados de supervivencia y supervisión de los efectos del tratamiento oncológico.

Family knowledge about the legal rights of children and adolescents with cancer.

OBJECTIVE: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. METHOD: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. RESULTS: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. CONCLUSION: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

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.