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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.
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Adaptação Psicológica , Criança Hospitalizada , Fibrose Cística , Pesquisa Qualitativa , Humanos , Criança , Masculino , Feminino , Adolescente , Doença Crônica/psicologia , Criança Hospitalizada/psicologia , Fibrose Cística/psicologia , Brasil , Esperança , Diabetes Mellitus Tipo 1/psicologia , Neoplasias/psicologia , Religião e Psicologia , Adolescente Hospitalizado/psicologiaRESUMO
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.
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Nível de Saúde , Mães , Humanos , Adolescente , Criança , Feminino , Doença Crônica , Poder Familiar , Pesquisa QualitativaRESUMO
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.
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Mães , Instituições Acadêmicas , Feminino , Criança , Adolescente , Humanos , Adulto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Doença Crônica , ComunicaçãoRESUMO
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.
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Neoplasias da Mama , Feminino , Humanos , Imagem Corporal , Pesquisa QualitativaRESUMO
This study aims to describe the prototype development and testing of a serious game designed for Brazilian children with diabetes. Following an approach of user-centered design, the researchers assessed game's preferences and diabetes learning needs to develop a Paper Prototype. The gameplay strategies included diabetes pathophysiology, self-care tasks, glycemic management, and food group learning. Diabetes and technology experts (n = 12) tested the prototype during audio-recorded sessions. Next, they answered a survey to evaluate the content, organization, presentation, and educational game aspects. The prototype showed a high content validity ratio (0.80), with three items not achieving the critical values (0.66). Experts recommended improving the game content and food illustrations. This evaluation contributed to the medium-fidelity prototype version, which after testing with diabetes experts (n = 12) achieved high content validity values (0.88). One item did not meet the critical values. Experts suggested increasing the options of outdoor activities and meals. Researchers also observed and video-recorded children with diabetes (n = 5) playing the game with satisfactory interaction. They considered the game enjoyable. The interdisciplinary team plays an important role guiding the designers in the use of theories and real needs of children. Prototypes are a low-cost usability and a successful method for evaluating games.
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Diabetes Mellitus Tipo 1 , Jogos de Vídeo , Criança , Humanos , Diabetes Mellitus Tipo 1/terapia , Design Centrado no Usuário , Interface Usuário-Computador , BrasilRESUMO
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.
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Diabetes Mellitus Tipo 1/tratamento farmacológico , Sistemas de Infusão de Insulina , Insulina/administração & dosagem , Adolescente , Criança , HumanosRESUMO
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.
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Sobreviventes de Câncer , Neoplasias Urológicas , Sobreviventes de Câncer/psicologia , Humanos , Qualidade de Vida/psicologia , Espiritualidade , Sobreviventes/psicologia , Neoplasias Urológicas/terapiaRESUMO
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.
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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.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adulto , Idoso , Cuidadores , Humanos , Neoplasias/terapia , Cuidados Paliativos , EspiritualidadeRESUMO
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.
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Amigos , Hospitalização , Adolescente , Criança , Doença Crônica , Hospitais , Humanos , Pesquisa Qualitativa , EspiritualidadeRESUMO
PURPOSE: The main stage of developing an educational health technology is meeting the expectations of users. Nurses in Brazil can benefit from online training about therapeutic play interventions. This study identified the learning demands of nurses for acquiring competence in the use of therapeutic play to build an online course. DESIGN AND METHODS: Focus groups study, guided by the COREQ guidelines. Nurses experienced in pediatric care participated in eight groups held in hospitals across all Brazilian regions in 2018. The focus group interviews had a mean duration of two hours and were moderated by the main researcher and an observer, both of whom were nurses experienced in qualitative research. All interviews were audio recorded. The transcripts of the audios were coded, from which the themes were developed, and thematic analysis performed. RESULTS: Nurses (N = 53, 8.5 ± 6.3 years of experience in pediatric care) reported their learning demands in three themes: "Learning theoretical concepts", "Developing therapeutic play skills", and "Learning the therapeutic play in a fun, interactive and motivational online environment". CONCLUSION: Nurses learning demands involve theoretical concepts and skills to implement therapeutic play through an interesting online course. PRACTICE IMPLICATIONS: By developing play-based competence through an online learning environment nurses can feel confident in implementing therapeutic play into their pediatric practice, setting the stage for a future of positive interaction between nurses and children in pediatric health care.
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Educação a Distância , Brasil , Criança , Competência Clínica , Grupos Focais , Humanos , Aprendizagem , Pesquisa QualitativaRESUMO
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.
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Terapias Espirituais , Espiritualidade , Feminino , Humanos , Pais , Gravidez , Religião , NatimortoRESUMO
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.
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Sobreviventes de Câncer/psicologia , Nível de Saúde , Neoplasias/reabilitação , Qualidade de Vida/psicologia , HumanosRESUMO
PURPOSE: Understanding disease mechanisms inside the body is crucial to engage youth with type 1 diabetes (T1D) in self-care behaviors. This study describes how Instructional Therapeutic Play (ITP) group sessions held by nurses in a Brazilian camp can enhance youth's understanding about T1D. DESIGN AND METHODS: Youth with T1D participated in video recorded ITP group sessions guided by the Sensitive Creative Method. First, participants were asked to create an artistic production based upon the query "What happens in the body of a young person who has diabetes?". They described their drawings and shared information, providing opportunities to discuss T1D pathophysiology. Second, campers were told a story about a child who had T1D onset using a rag doll and illustrative figures. Participants were asked to create a second artistic production based upon the same initial query. Finally, campers had another presentation of the drawings, discussion, and sharing through the question "How did the story told help you understand your diabetes?" Transcriptions of ITP sessions were submitted to thematic analysis. RESULTS: Twenty participants (9-17yo) were assigned to age/gender matched groups. Four themes were built: Designing insulin production; Experiencing the glycemic vigilance in diabetes management; The ITP session as a safe space to share challenges with nurses and peers; and Unraveling the myths of diabetes with the ITP session. CONCLUSION: Therapeutic play sessions enhanced youth's knowledge and unraveled myths of T1D pathophysiology. PRACTICE IMPLICATIONS: ITP sessions can be developed by nurses in order to deliver age-appropriate diabetes education to pediatric patients.
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Diabetes Mellitus Tipo 1 , Adolescente , Glicemia , Brasil , Criança , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/terapia , Humanos , Grupo Associado , AutocuidadoRESUMO
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.
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Neoplasias/fisiopatologia , Dor/fisiopatologia , Qualidade de Vida , Sono , Actigrafia , Adolescente , Fatores Etários , Estudos de Casos e Controles , Criança , Feminino , Humanos , Leucemia/fisiopatologia , Linfoma/fisiopatologia , Masculino , Estudos Prospectivos , Sarcoma/fisiopatologia , Fatores SexuaisRESUMO
OBJECTIVES: This integrative review aimed to synthesize and critically evaluate the methodological quality of the evidence on parent's participation in managing their children's postoperative pain at home. DESIGN: Integrative review. DATA SOURCES: To locate relevant articles, two reviewers independently searched four electronic databases systematically using predefined inclusion and exclusion criteria. REVIEW/ANALYSIS METHODS: The methodological quality of 23 eligible studies was critically appraised using published evaluation criteria. A qualitative content analysis was then conducted to synthesize findings of the studies to identify thematic trends and factors on the nature of parents' participation and ability to effectively manage their children's pain at home. RESULTS: Methodological quality of most of the 15 surveys was adequate, whereas shortcomings were identified in 6 of the 7 clinical trials and the 1 qualitative study that were included in this review. The three themes identified pertained to parent use of informational sources, postoperative pain medications, and nonpharmacologic pain treatment approaches. Results indicate parents lack the information they need to effectively make use of pharmacologic and nonpharmacologic pain treatment approaches. CONCLUSIONS: There is need to improve communication between parents and health professionals before and after the child's surgery and to provide parents with specific verbal and written instructions and strategies on how to assess and manage their children's pain.
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Manejo da Dor/normas , Dor Pós-Operatória/terapia , Pais/psicologia , Participação do Paciente/métodos , Adulto , Criança , Feminino , Humanos , Masculino , Manejo da Dor/métodos , Manejo da Dor/psicologia , Medição da Dor/métodos , Dor Pós-Operatória/psicologia , Relações Pais-Filho , Poder Familiar/psicologia , Participação do Paciente/psicologia , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
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.
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Doença Crônica/psicologia , Família/psicologia , Esperança , Adolescente , Criança , Humanos , Pesquisa QualitativaRESUMO
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.
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Doença Crônica/psicologia , Psicometria/estatística & dados numéricos , Qualidade de Vida/psicologia , Religião e Medicina , Espiritualidade , Inquéritos e Questionários/normas , Adolescente , Brasil , Criança , Doença Crônica/etnologia , Feminino , Nível de Saúde , Humanos , Masculino , Pais , Procurador , Reprodutibilidade dos Testes , Autorrelato , TraduçãoRESUMO
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.
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Assistência Ambulatorial/métodos , Comunicação , Jogos e Brinquedos , Criança , Feminino , Seguimentos , Humanos , Entrevistas como Assunto , MasculinoRESUMO
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.