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OBJECTIVES: Adolescents and Young Adults (AYAs) with cancer experience symptoms related to disease and treatment. To manage these symptoms, they need to develop self-management behaviors, yet no tool exists to assess these behaviors. The Symptom Self-Management Behaviors Tool (SSMBT) was developed to meet this need. METHODS: The study consisted of 2 phases. Phase 1 evaluated content validity, and Phase 2 evaluated reliability and validity. The SSMBT initially contained 14 items with 2 dimensions: (1) behaviors used to Manage Symptoms and (2) behaviors used to communicate with providers regarding symptoms. Four oncology professionals and 5 AYAs with cancer assessed the content validity. Evaluation of reliability and validity involved 61 AYAs with cancer. Reliability was evaluated using Cronbach's alpha. Construct validity was assessed with factor analysis. Discriminant validity was assessed using associations with symptom severity and distress. RESULTS: Content validity evaluation supported the importance of the items. Factor analysis supported a two-factor structure: Manage Symptoms (8 items) and Communicate with Healthcare Providers (4 items) subscales. Internal consistency reliability for the total SSMBT was acceptable with Cronbach's alpha = 0.74. Cronbach's alpha value for the Manage Symptoms subscale was α = 0.69 and for the Communicate with Healthcare Providers subscale was α = 0.78. The SSMBT total and the Manage Symptoms subscale scores were moderately correlated with symptom severity (r = 0.35, p = 0.014; r = 0.44, p = 0.002, respectively), partially supporting discriminant validity. SIGNIFICANCE OF RESULTS: Systematic assessment of behaviors AYAs use is critical for clinical practice and evaluate interventions to improve self-management. The SSMBT demonstrates initial reliability and validity but requires further evaluation for clinical interpretation and future use.
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Neoplasias , Automanejo , Humanos , Adolescente , Adulto Joven , Encuestas y Cuestionarios , Psicometría , Reproducibilidad de los Resultados , Neoplasias/complicaciones , Neoplasias/terapiaRESUMEN
A family history of substance problems is a well-known risk factor for substance use and use disorders; however, much of this research has been conducted in studies with predominantly White subjects. The aim of this study was to examine the associations between family history density of substance problems and drug use, risk for drug use disorder, and prescription drug misuse in a sample of African American adults. Results indicate that family history density of substance problems increased the risk for all drug outcomes in the full sample. However, when subgroup analyses by gender were conducted, family history was not a risk factor among men for prescription drug misuse.
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Advances in technologies including omics, apps, imaging, sensors, and big data are increasingly being integrated into research by nurse scientists, but the impact on improving health equity is still unclear. In this article, nursing research faculty from one institution discuss challenges and opportunities experienced when integrating various technologies into their research aimed at promoting health equity. Using exemplars from faculty experiences, a three-pronged approach to keeping patients and communities and the goal of health equity central in research while incorporating advancing technologies is described. This approach includes establishing long-term engagement with populations underrepresented in research, adopting strategies to increase diversity in study participant recruitment, and training and collaboration among a diverse workforce of educators, clinicians, and researchers. Training nurse scientists in integrating data and technology for advancing the science on health equity will shift the culture of how we understand, collaborate, and grow with the communities in which we train and practice as nurse scientists.
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Equidad en Salud , Investigación en Enfermería , Humanos , Promoción de la Salud , Investigación en Enfermería/métodos , Docentes de Enfermería , Recursos HumanosRESUMEN
PURPOSE OF REVIEW: We aimed to review the recent research on the childhood cancer symptom experience pertaining to socioeconomic factors, biology and genetics, growth and development, family psychosocial dynamics, and social and treating environments to begin to formulate recommendations for a personalized approach to symptom management. RECENT FINDINGS: Cancer symptoms are common and distressing in children and negatively impact child and family quality of life. Many interacting factors influence children's cancer symptoms experiences, including the assessment and management of such symptoms. This paper highlights several gaps in the research related to the cancer symptom experience including routine symptom assessment, the impact of socioeconomic, biological, and genetic factors on symptoms, and the establishment of effective symptom management partnerships with families. Based on our findings, we provide recommendations related to that research which is ready to be implemented into clinical practice and areas for needed future efforts.
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Neoplasias , Calidad de Vida , Niño , Humanos , Neoplasias/tratamiento farmacológico , Evaluación de SíntomasRESUMEN
BACKGROUND: Health care transition (HCT) has become increasingly important as adolescents and young adults (AYAs) with complex medical conditions now live well into adulthood but little attention has been given to parents of AYAs preparing for HCT. OBJECTIVE: This scoping review aimed to identify and synthesize information on parental facilitators and barriers to health care transition readiness. ELIGIBILITY CRITERIA: English-language, peer-reviewed original studies focused on the parents' experience of HCT were included. Studies were excluded if AYAs were not anticipated to be independent or if AYAs had only mental health disorders. CHARTING METHODS: Parent-reported facilitators and barriers were identified in each study and then categorized to identify common themes. RESULTS: Themes related to parental facilitators included evidence of coordination between pediatric and adult levels of care, healthcare provider guidance for HCT, and parental awareness and acceptance of natural seasons of life. Themes related to parental barriers included relationship loss, loss of parental role, lack of knowledge and/or skills, and concerns related to the health care system in general. CONCLUSION: Common facilitators and barriers were found across studies, regardless of medical diagnosis. Relationships and role change figure prominently in parents' perceptions of the HCT experience and their readiness for their AYA children to transition. These findings suggest potential areas for future research inquiry as well as potential nursing interventions designed to aid parents through HCT.
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Trastornos Mentales , Transición a la Atención de Adultos , Adolescente , Adulto , Niño , Personal de Salud , Humanos , Padres , Transferencia de Pacientes , Adulto JovenRESUMEN
PURPOSE: The aim of this study was to update the clinical practice guidelines for the use of basic oral care (BOC) interventions for the prevention and/or treatment of oral mucositis (OM). METHODS: A systematic review was conducted by the Mucositis Study Group of the Multinational Association of Supportive Care in Cancer/International Society for Oral Oncology (MASCC/ISOO). The body of evidence for each intervention in each cancer treatment setting was assigned an evidence level. The findings were added to the database used to develop the 2013 MASCC/ISOO clinical practice guidelines. Based on the evidence level, one of the following three guideline determinations was possible: Recommendation, Suggestion, No guideline possible. RESULTS: A total of 17 new papers across six interventions were examined and merged with a previous database. Based on the literature, the following guidelines were possible. The panel suggests that the implementation of multi-agent combination oral care protocols is beneficial for the prevention of OM during chemotherapy, head and neck (H&N) radiation therapy (RT), and hematopoietic stem cell transplantation (Level of Evidence III). The panel suggests that chlorhexidine not be used to prevent OM in patients undergoing H&N RT (Level of Evidence III). No guideline was possible for professional oral care, patient education, saline, and sodium bicarbonate, and expert opinion complemented these guidelines. CONCLUSIONS: The evidence supports the use of multi-agent combination oral care protocols in the specific populations listed above. Additional well-designed research is needed on the other BOC interventions prior to guideline formulation.
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Atención Odontológica/métodos , Mucositis/terapia , Neoplasias/tratamiento farmacológico , Guías de Práctica Clínica como Asunto , Estomatitis/prevención & control , Estomatitis/terapia , Humanos , Oncología Médica , Proyectos de InvestigaciónRESUMEN
PURPOSE: Adolescents and young adults (AYAs) with cancer experience multiple symptoms related to their cancer and its treatment which can negatively impact their development and quality of life. An understanding of the strategies AYAs use to self-manage their symptoms is limited. This study described symptom self-management strategies reported by AYAs with cancer using an iPad-based symptom heuristics tool, the Computerized Symptom Capture Tool. METHODS: The study used a cross-sectional, descriptive design. AYAs' free text responses relating their symptom self-management strategies were explored using qualitative content analysis procedures. Strategies were examined overall and by individual symptoms. RESULTS: Seventy-two AYAs 13-29 years of age (mean 18.4 years) reported a total of 772 symptom self-management codes for 585 individual symptoms. These codes were organized into 119 distinct categories. These categories were further organized into 16 subthemes and 3 overarching themes: "Things I Take or Not" (n = 209 codes), "Physical Care Things I Do" (n = 367 codes), and "Psychosocial Care Things I Do" (n = 132 codes). AYAs frequently reported strategies from all three of the symptom self-management themes to manage individual symptoms; however, "medications" was the most frequently reported strategy. CONCLUSION: AYAs receiving chemotherapy use multiple common, yet uniquely individual symptom self-management strategies. AYAs' reported strategies range from those that involve shared management with a healthcare provider to those that AYAs implement independently. The study provides a foundation for future research to empower AYAs to engage in symptom self-management and to guide healthcare providers as they discuss developmentally relevant and evidence-based symptom self-management strategies.
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Neoplasias/terapia , Automanejo/métodos , Adolescente , Adulto , Computadoras de Mano , Estudios Transversales , Femenino , Humanos , Masculino , Aplicaciones Móviles , Neoplasias/tratamiento farmacológico , Neoplasias/psicología , Cuidados Paliativos/métodos , Calidad de Vida , Adulto JovenRESUMEN
BACKGROUND: The need for reliable, valid tools to measure patient-reported outcomes (PROs) is critical both for research and for evaluating treatment effects in practice. The Patient-Reported Outcomes Measurement Information System Fatigue-Short Form v1.0-Fatigue 7a (PROMIS F-SF) has had limited psychometric evaluation in various populations. OBJECTIVES: The aim of the study is to examine psychometric properties of PROMIS F-SF item responses across various populations. METHODS: Data from five studies with common data elements were used in this secondary analysis. Samples from patients with fibromyalgia, sickle cell disease, cardiometabolic risk, pregnancy, and healthy controls were used. Reliability was estimated using Cronbach's alpha. Dimensionality was evaluated with confirmatory factor analysis. Concurrent validity was evaluated by examining Pearson's correlations between scores from the PROMIS F-SF, the Multidimensional Fatigue Symptom Inventory-Short Form, and the Brief Fatigue Inventory. Discriminant validity was evaluated by examining Pearson's correlations between scores on the PROMIS F-SF and measures of stress and depressive symptoms. Known groups validity was assessed by comparing PROMIS F-SF scores in the clinical samples to healthy controls. RESULTS: Reliability of PROMIS F-SF scores was adequate across samples, ranging from .72 in the pregnancy sample to .88 in healthy controls. Unidimensionality was supported in each sample. Concurrent validity was strong; across the groups, correlations with scores on the Multidimensional Fatigue Symptom Inventory-Short Form and Brief Fatigue Inventory ranged from .60 to .85. Correlations of the PROMIS F-SF with measures of stress and depressive mood were moderate to strong, ranging from .37 to .64. PROMIS F-SF scores were significantly higher in clinical samples compared to healthy controls. DISCUSSION: Reliability and validity of the PROMIS F-SF were acceptable. The PROMIS F-SF is a suitable measure of fatigue across the four diverse clinical populations included in the analysis.
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Fatiga/diagnóstico , Calidad de Vida , Encuestas y Cuestionarios/normas , Adulto , Anciano , Anciano de 80 o más Años , Ansiedad/diagnóstico , Fatiga/etiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Dimensión del Dolor/métodos , Psicometría , Índice de Severidad de la EnfermedadRESUMEN
Adolescents and young adults (AYAs) with cancer experience multiple distressing symptoms during treatment. Because the typical approach to symptom assessment does not easily reflect the symptom experience of individuals, alternative approaches to enhancing communication between the patient and provider are needed. We developed an iPad-based application that uses a heuristic approach to explore AYAs' cancer symptom experiences. In this mixed-methods descriptive study, 72 AYAs (13-29 years old) with cancer receiving myelosuppressive chemotherapy used the Computerized Symptom Capture Tool (C-SCAT) to create images of the symptoms and symptom clusters they experienced from a list of 30 symptoms. They answered open-ended questions within the C-SCAT about the causes of their symptoms and symptom clusters. The images generated through the C-SCAT and accompanying free-text data were analyzed using descriptive, content, and visual analyses. Most participants (n = 70) reported multiple symptoms (M = 8.14). The most frequently reported symptoms were nausea (65.3%), feeling drowsy (55.6%), lack of appetite (55.6%), and lack of energy (55.6%). Forty-six grouped their symptoms into one or more clusters. The most common symptom cluster was nausea/eating problems/appetite problems. Nausea was most frequently named as the priority symptom in a cluster and as a cause of other symptoms. Although common threads were present in the symptoms experienced by AYAs, the graphic images revealed unique perspectives and a range of complexity of symptom relationships, clusters, and causes. Results highlight the need for a tailored approach to symptom management based on how the AYA with cancer perceives his or her symptom experience.
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Antineoplásicos/efectos adversos , Heurística , Neoplasias/complicaciones , Evaluación de Síntomas , Adolescente , Adulto , Computadoras de Mano , Fatiga/etiología , Femenino , Humanos , Masculino , Náusea/etiología , Neoplasias/tratamiento farmacológico , Adulto JovenRESUMEN
BACKGROUND: Approximately 10% of U.S. infants and toddlers are considered overweight. Hispanic infants persistently show higher prevalence rates for being overweight compared to other infants. Little is known about factors promoting excessive infant weight gain in Latinos. PURPOSE: The aim of this study was to describe multidimensional factors and maternal feeding practices that may correlate with infant overfeeding in Latina mothers. METHODS: Participants were 62 low-income immigrant Latina mothers and their infants. Study measures were: acculturation; maternal feeding beliefs and practices; food availability; temperament; 24-hour dietary recall; and infant's weight-for-height z score. RESULTS: In regression models adjusted for infant's age, healthier feeding practices were significantly predicted by maternal education and infant's age. Most mothers preferred feeding their infants either formula or a combination of breast milk and formula. A significant proportion of the infants were overweight or obese and yet some mothers displayed difficulty recognizing this problem. CONCLUSION: Future intervention efforts should focus primarily on the promotion of healthy feeding practices that discourage overfeeding and support exclusive breastfeeding among this ethnic group.
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Emigrantes e Inmigrantes , Conducta Alimentaria , Hispánicos o Latinos , Hiperfagia , Pobreza , Lactancia Materna , Humanos , Lactante , Estados UnidosRESUMEN
BACKGROUND: The aim of this study was to evaluate the feasibility and acceptability of a computer-based symptom cluster heuristics tool designed to explore symptom clusters experienced by adolescents and young adults (AYAs) with cancer. The Computerized Symptom Capture Tool (C-SCAT) is a newly developed iPad application, which combines graphical images and free text responses in an innovative heuristics approach to explore symptoms and symptom clusters. PROCEDURE: Seventy-two AYAs (13-29 years of age) with cancer at five institutions across the US completed the C-SCAT 24-96 hours after the initial chemotherapy dose in a chemotherapy cycle. RESULTS: All participants completed the C-SCAT successfully in a mean of 25 minutes, with 74% reporting that the final image was an accurate or very accurate representation of their symptom experience. Little clarification/coaching was necessary while completing the C-SCAT. Few technical problems were encountered. Participants judged the C-SCAT questions to be clear and endorsed ease of following instructions, typing, and drawing. CONCLUSIONS: The C-SCAT demonstrated feasibility and acceptability. With refinement based on study results, the C-SCAT has potential to: (a) empower AYAs to communicate their symptom experience and partner with providers in their care; (b) improve symptom management and ameliorate distress; and (c) translate to use with other highly symptomatic populations.
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Quimioterapia Asistida por Computador , Neoplasias/tratamiento farmacológico , Aceptación de la Atención de Salud , Adolescente , Adulto , Estudios de Factibilidad , Femenino , Humanos , Masculino , Adulto JovenRESUMEN
OBJECTIVES: This article reports the cross-studies analysis of projects from the P30 Center of Excellence for Biobehavioral Approaches to Symptom Management. Although the projects investigated diverse populations, a consistent theoretical and empirical approach guided each project. METHODS: Common data elements included the following measures of psychobehavioral variables: the PROMIS Short-Form Fatigue Scale, the Center of Epidemiologic Studies Depression Scale, and the Perceived Stress Scale. Plasma cytokines were measured as the shared biological data element. RESULTS: Data were analyzed from 295 participants with fibromyalgia (n = 72), second trimester pregnancy (n = 73), sickle cell anemia (n = 60), and cardiometabolic risk (n = 91). The mean age of participants was 35.4 years, and the most participants were female. Levels of symptoms were generally elevated across samples; the level of fatigue ranged from 18.9 to 24.7, depressive symptoms from 12.5 to 23.4, and perceived stress from 16.5 to 21.8. Intercorrelations among symptom measures and perceived stress were strong across the samples. However, correlations among psychobehavioral variables and cytokines were variable, indicating a separate relationship for the measures with cytokines. CONCLUSIONS: Future work in symptom science could benefit from common data elements, including biomarkers, across populations to better develop the taxonomy of symptom profiles across conditions.
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Anemia de Células Falciformes/epidemiología , Enfermedades Cardiovasculares/epidemiología , Depresión/epidemiología , Fatiga/epidemiología , Fibromialgia/epidemiología , Enfermedades Metabólicas/epidemiología , Complicaciones del Embarazo/epidemiología , Adulto , Biomarcadores/análisis , Comorbilidad , Estudios Transversales , Citocinas/análisis , Depresión/diagnóstico , Depresión/terapia , Fatiga/diagnóstico , Fatiga/terapia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Embarazo , Segundo Trimestre del EmbarazoRESUMEN
INTRODUCTION: The purpose of this study was to explore the reliability and construct validity of the EPDS-US. METHODS: To enhance the perinatal mental health screen, we adapted the Edinburgh Postnatal Depression Screen (EPDS) for application in the United States, and evaluated reliability and construct validity of the EPDS-US in a sample of 100 postpartum individuals. We explored reliability by estimating internal consistency of the scale and evaluating concurrent validity with correlations to the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder Assessment (GAD-7); and construct validity using factor analysis and discriminant validity with correlations to the Perceived Stress Scale (PSS). RESULTS: We present both a one-factor (Cronbach's alpha of 0.83) and two-factor model consisting of depressive (Cronbach's alpha 0.76) and anxiety symptoms (Cronbach's alpha 0.78) of the EPDS-US. Related to discriminant validity, the EPDS-US and PSS exhibited a moderate correlation of 0.71. For measures of concurrent validity, correlations with the PHQ-9 and GAD-7 were moderate; 0.63 and 0.68, respectively. CONCLUSION: The EPDS-US was adapted to enhance the perinatal mental health screening experience for populations in the US while maintaining the reliability and validity of the original Edinburgh Postnatal Depression Scale. These findings contribute to the evidence of reliability and validity of the EPDS-US in perinatal populations in the United States; presenting initial evidence supporting construct validity and concurrent validity of this newly adapted 10-item scale.
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Depresión Posparto , Autoinforme , Femenino , Embarazo , Humanos , Depresión Posparto/diagnóstico , Depresión Posparto/psicología , Psicometría , Reproducibilidad de los Resultados , Pruebas Psicológicas , Escalas de Valoración PsiquiátricaRESUMEN
BACKGROUND: Post-intensive care syndrome (PICS) affects 25% to 50% of adults who survive an intensive care unit (ICU) stay. Although the compounding of PICS impairments (cognitive, physical, and psychological) could intensify the syndrome, research on relationships among impairments is limited, particularly in patients with delirium. OBJECTIVES: To examine associations among PICS impairments and examine delirium status and its relationship to PICS impairments at ICU discharge and 1 month later. METHODS: A descriptive, correlational study of adults who survived an ICU stay. Participants completed measures for depression, anxiety, posttraumatic stress, physical function, functional status, and cognition at ICU discharge and 1 month later. Relationships among PICS impairments were examined with Spearman correlations; differences in impairments by delirium status were assessed with t tests. RESULTS: Of 50 enrolled participants, 46 were screened for PICS impairment at ICU discharge and 35 were screened 1 month later. Cognitive impairment was the most common impairment at both time points. A positive correlation was found between cognition and functional status at ICU discharge (ρ = 0.50, P = .001) and 1 month later (ρ = 0.54, P = .001). Cognition and physical functioning were positively correlated 1 month after discharge (ρ = 0.46, P = .006). The group with delirium had significantly lower functional status scores than the group without delirium at ICU discharge (P = .04). CONCLUSIONS: The findings suggest a moderate correlation between cognitive and physical impairments. This relationship should be explored further; ICU survivors with undiagnosed cognitive impairment may have delayed physical recovery and greater risk for injury.
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Trastornos del Conocimiento , Disfunción Cognitiva , Delirio , Adulto , Humanos , Disfunción Cognitiva/epidemiología , Unidades de Cuidados Intensivos , Trastornos del Conocimiento/epidemiología , Trastornos del Conocimiento/diagnóstico , Delirio/epidemiología , Sobrevivientes/psicologíaRESUMEN
BACKGROUND: The symptom experience of adolescents and young adults (AYAs) with cancer can differ based on the cancer and its treatments. A dearth of information exists on how symptoms differ by individual factors such as age and gender. OBJECTIVES: The objectives were to describe symptoms in AYAs across 5 cancer diagnostic groups by the individual factors of age group, sex, race/ethnicity, and time since diagnosis; and then to describe symptoms based on these individual factors within diagnostic groups. METHODS: This was a secondary analysis of baseline data pooled from 2 multisite studies on symptoms in AYAs with acute lymphoblastic leukemia, brain cancer, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma. Symptoms were assessed using the Computerized Symptom Capture Tool. RESULTS: Data from 118 AYAs with cancer, aged 13 to 29 years, were analyzed. Eight of the most commonly reported symptoms were reported in at least 4 diagnostic groups. Across diagnostic groups, symptoms varied little based on individual factors. Within groups, certain symptoms differed in frequency by individual factors. CONCLUSIONS: The lack of major differences in symptom prevalence based on individual factors across diagnostic groups supports a heterogeneous approach to symptom research with AYAs. The study identified individual factors within diagnostic groups worthy of further exploration. IMPLICATIONS FOR PRACTICE: Providers can facilitate discussions with AYAs about symptoms by being aware of common symptoms that may occur in certain cancer diagnostic groups and based on individual factors. The significance of the individual symptom experience should not be underestimated, emphasizing the importance of person-centered symptom assessment.
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Neoplasias , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicaciones , Evaluación de Síntomas , Adulto JovenRESUMEN
PURPOSE: The symptom most frequently associated with sickle cell disease (SCD) is pain, but recent research is beginning to indicate that fatigue as an increasingly important symptom of this disease upon which to focus research efforts. This article explores biological and behavioral factors that can potentially contribute to fatigue in SCD. ORGANIZING FRAMEWORK: A biobehavioral framework guides this discussion of factors that may contribute to SCD fatigue. FINDINGS: The pathophysiology of the disease process, such as the profound hemolytic anemia and unpredictable vasoocclusive crises, suggests that individuals with SCD are at risk for both acute and chronic fatigue. For example, hypoxemia can cause muscle weakness and produce oxidative stress, which, in turn, increases fatigue. Sickled erythrocytes disrupt the vascular endothelium and stimulate proinflammatory cytokines, which are linked to sleep disruptions. Pain, the most notorious symptom of SCD, has a complex and mechanistically poorly understood relationship with fatigue. CONCLUSIONS: Little is known about the symptom of fatigue in SCD. Considering the biological and behavioral factors of SCD that could potentially contribute to fatigue, there is a great need for research on the nature and potential mechanisms of fatigue in SCD. CLINICAL RELEVANCE: Fatigue in SCD may negatively affect quality of life. Understanding factors that may contribute to fatigue aids the clinician in identifying causes and determining treatment.
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Anemia de Células Falciformes/fisiopatología , Fatiga/fisiopatología , Anemia de Células Falciformes/enfermería , Ansiedad/fisiopatología , Depresión/fisiopatología , Fatiga/enfermería , Humanos , Hipoxia/fisiopatología , Inflamación/fisiopatología , Dolor/fisiopatología , Calidad de Vida , Factores de Riesgo , Estrés Psicológico/fisiopatologíaRESUMEN
OBJECTIVES: Discuss the clinical assessment and management of symptoms for children and adolescents receiving treatment for cancer with attention to a person-centered approach to care. DATA SOURCES: Review of currently published literature and guidelines pertaining to symptom assessment and management for children and adolescents receiving treatment for cancer. CONCLUSION: Symptoms such as pain, nausea, and fatigue are commonly reported by children and adolescents receiving cancer treatment and are associated with greater symptom burden. Symptom assessment should be tailored to the child or adolescent and include the child's or adolescent's preference for reporting symptoms and attention to the symptoms that are of greatest priority. Evidence-based guidelines for the management of symptoms, including pain and nausea, are available to guide symptom management interventions and should be tailored to provide person-centered care. IMPLICATIONS FOR NURSING PRACTICE: Nurses can lead efforts through clinical practice and research initiatives to advance person-centered symptom care for children and adolescents with cancer on a global level. Priorities for future work to advance person-centered symptom assessment and management include (1) identification of best practices for symptom assessment, (2) attention to social determinants of health and their subsequent influence on symptom outcomes, (3) compilation of evidence for management of less commonly reported symptoms, and (4) implementation of published clinical guidelines for symptom management in practice settings.
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Fatiga , Neoplasias , Adolescente , Niño , Fatiga/diagnóstico , Fatiga/etiología , Fatiga/terapia , Humanos , Náusea/diagnóstico , Náusea/terapia , Neoplasias/terapia , Dolor , Evaluación de SíntomasRESUMEN
OBJECTIVE: To translate, culturally adapt, and evaluate the psychometric properties of Adolescent Barriers Questionnaire for use in Brazilian adolescents with cancer aged 12 to 18 years, based on the original American Adolescent Barriers Questionnaire which was designed to measure the extent to which adolescents with cancer have concerns about reporting pain and using analgesics. METHODS: The study analyzed the psychometric properties reliability (internal consistency and test-retest) and validity (known groups and convergent) of Adolescent Barriers Questionnaire in adolescents between 12 and 18 years of age with a diagnosis of cancer who were using or who had used analgesic medication (opioid or not) in a pediatric public health institution. It was estimated 64 adolescents as sample size and the research was conclude with 48. RESULTS: Results of pre-test suggest good understanding (content validity index >0.9). The internal consistency value Cronbach's α was 88%. The convergent validity values ranged between -0.400 and -0.450. Analysis of known groups showed that the instrument discriminated groups of patients with solid vs. hematologic tumors. The intraclass correlation coefficient obtained after retest was 0.863. CONCLUSION: After the process of translations, validations and analysis of psychometric properties, the Brazilian Portuguese version of Adolescent Barriers Questionnaire could be considered culturally adapted, valid, and reliable for the Brazilian adolescent population with cancer aged 12 to 18 years and it can be useful in practical clinic, offering the health professionals the opportunity to understand which barriers the adolescent with cancer can encounter and offer, thus, all the support to overcome them.
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Neoplasias , Traducciones , Adolescente , Brasil , Niño , Humanos , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
Patient-related barriers to reporting pain and using analgesics (e.g., fear of addiction) can detrimentally affect pain management for adolescents with cancer. However, adolescent barriers have not been systematically investigated; furthermore, no instrument exists to measure these barriers. The purposes of this study were to examine the psychometric properties of the newly developed Adolescent Barriers Questionnaire (ABQ) and to describe adolescent barriers to pain management. The study was guided by a barriers model which suggests that barriers (beliefs) influence coping (hesitation to report pain, use of analgesics, and adequacy of analgesics), which in turn affects outcomes (pain severity and quality of life). Sixty adolescent patients with cancer aged 12-17 years completed the ABQ; 22 of which reported pain and also completed measures of hesitation, analgesic use, pain severity, and physical and psychosocial function. Initial testing provided evidence that the ABQ is reliable and valid. Internal consistency estimates for the total scale ranged from 0.91 to 0.94 and for the subscales ranged from 0.54 to 0.96. Test-retest reliability over a 2-week period was r=0.82. Construct validity was supported by a significant positive relationship between barriers scores and coping (hesitation to report pain and to use analgesics). However, coping did not mediate the relationship between barriers and outcomes. All of the adolescents reported some barriers. Barriers scores did not vary by age or gender. The leading barrier was concern that social activities would be restricted if pain was reported. Clearly, adolescents have barriers that can interfere with pain management. Interventions are needed to identify and help adolescents overcome these barriers.
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Neoplasias , Enfermería Oncológica/métodos , Dolor , Adaptación Psicológica , Adolescente , Analgésicos/uso terapéutico , Actitud Frente a la Salud , Niño , Femenino , Humanos , Masculino , Neoplasias/complicaciones , Neoplasias/enfermería , Neoplasias/psicología , Dolor/tratamiento farmacológico , Dolor/enfermería , Dolor/psicología , Psicología del Adolescente , Calidad de Vida , Encuestas y CuestionariosRESUMEN
Introduction: Participation on a collaborative team is an attractive option for conducting research, especially in pediatric hematology/oncology nursing, where the patient population is small. The Consortium to Study Symptoms in Adolescents and Young Adults with Cancer (CS2AYAC) is a nursing research team that has been in existence for over a decade. Purpose: The authors share the process by which CS2AYAC formed and describe key features that contribute to its sustainability. Results: While the team developed organically rather than via the tenets of team science, key aspects of success include principles related to mentorship, communication, building trust, establishing shared goals, and managing conflict. Conclusions: This description of one team's experience may help other nurses build their own teams for research. Strong, collaborative research teams will advance pediatric hematology/oncology nursing science and scholarship and can be an important source of collegiality and support.