"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.

The experience of coronaphobia among health professionals and their family members during COVID-19 pandemic: A qualitative study.

Background: Coronaphobia is an excessive fear of becoming infected by the COVID-19 virus. Situations of coronaphobia against health professionals have been identified. Therefore, there is a need to develop studies to understand family impact and experience of COVID-19 pandemic and coronaphobia. Aim: To describe the coronaphobia experience of health professionals and of one of their family members during the first wave of the COVID-19 pandemic. Methods: Exploratory qualitative study using narrative inquiry was used. This study was guided by the concept of coronaphobia and Family Systems Nursing as conceptual frameworks. Face-to-face and telephone interviews were conducted from September to November 2020 with 14 health professionals, including nurses and physicians and one of their family members (n = 14). Findings: Three descriptive themes were identified which highlight professional-family dyads' experience of coronaphobia as a reciprocal and relational process. Coronaphobia was demonstrated by unknown or close people, in a disguised or explicit way, and generated suffering in the dyads and in the family unit. Consequently, individual and/or family strategies were developed to allow for the protection of the family system and the maintenance of its functioning. Discussion: This study describes how the dyads of health professionals and their family members identify the experiences of coronaphobia. In addition, it was possible to analyze the repercussions of coronaphobia on the dyad and the strategies they used to deal with it. Conclusions: This study extends understanding about the relationships between the experience of coronaphobia among health professionals and one of their family members and the experience of physical, cognitive and emotional suffering during the COVID-19 pandemic.

'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta-synthesis'.

INTRODUCTION: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare. OBJECTIVE: This meta-synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care. METHODS: A systematic review was performed in six databases, and 14 studies were included in this meta-synthesis. RESULTS: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end-of-life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering. CONCLUSION: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi-professional psychosocial care.

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.

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.

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.

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.

Measuring Spiritual Well-Being in Brazilian Adolescents with Chronic Illness Using the FACIT-Sp-12: Age Adaptation of the Self-Report Version, Development of the Parental-Report Version, and Validation.

Spiritual well-being is a major issue in health care, but instruments for measuring this construct in adolescents are lacking. This study adapted the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being Scale (FACIT-Sp-12) for use with Brazilian adolescents with chronic diseases and developed a parental observer-rated version, using an expert panel, back-translation, and cognitive interviews with 72 participants. The psychometric properties of both versions were verified with two- and three-factor models by testing with 212 participants. The self- and parental-reported versions showed face validity, content validity, and acceptable levels of internal consistency for the overall scale and the two-factor model. The convergent validity was satisfactory for most items in both two- and three-factor models, but there was a lack of discrimination in the three-factor model using multitrait-multimethod analysis. This study presents the first instrument to assess the spiritual well-being of adolescents from their point of view and to allow their parents to serve as evaluators. However, we recommend further psychometric testing of the self- and parental-report scales to assess spiritual well-being in adolescents with chronic diseases in Brazil.

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.

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.

"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.

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.

"Opportunistic Care": A Focus Group Study of Nurses' Perspective on Caring for Long-term Cancer Survivors and Their Families.

BACKGROUND: The global population of long-term cancer survivors is increasing, thanks to advances in treatments and care. Healthcare systems are working to address the unique needs of these individuals. However, there remains a knowledge gap concerning nurses' view on cancer survivorship care. OBJECTIVE: To identify nurses' perspective of care for long-term cancer survivors and their families. METHODS: This qualitative descriptive study used 5 focus groups comprising 33 nurses from primary healthcare and specialized oncology care. Data analysis was conducted through thematic analysis, and the study received ethical approval. RESULTS: Long-term cancer survivors and their families often remained unrecognized as a distinct group within the healthcare system. Consequently, nurses provide what can be termed as "opportunistic care" during nurse-survivor encounters, addressing health needs beyond the purpose of the initial healthcare visit. This absence of a systematic or structured approach for this patient group has prompted nurses to seek the establishment of a comprehensive framework through survivorship care plans, thus ensuring a continuum of care for this specific population. CONCLUSION: The lack of a structured approach to caring for long-term cancer survivors and their families, often invisible as a distinct population group, results in nurses providing care on an opportunistic basis. IMPLICATIONS FOR PRACTICE: It is crucial to develop and implement survivorship care plans tailored to this population's needs. Simultaneously, it is important to advance research in this area and establish an educational framework for nurses, enabling them to effectively address the care of long-term cancer survivors and their families.

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.

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.

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.

Waves of family hope: narratives of families in the context of pediatric chronic illness.

OBJECTIVE: to analyze narratives about the experience of hope of families in the context of pediatric chronic illness. METHOD: a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation. RESULTS: the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons. CONCLUSION: the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource.