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1.
J Pediatr Nurs ; 65: 33-43, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35490550

RESUMO

PURPOSE: Mobile health (mHealth) resources, including apps, are emerging as resources to support children in tracking symptoms and other health-related data. The purpose of this study was to describe symptoms and daily experiences reported by elementary school-age children receiving treatment for cancer using the newly developed Color Me Healthy app. DESIGN AND METHODS: Participants in this descriptive study were children 6-12 years of age, who were receiving cancer treatment at a free-standing children's hospital in the Intermountain West of the United States. Children were requested to use the app for at least five days between clinical visits. Children's app-reported data were extracted from individual user accounts for analysis. Quantitative data were summarized descriptively. Qualitative data were summarized using qualitative content analysis. RESULTS: Nineteen children (6-12 years; median 8 years; 7 females) completed 107 days of app use. All children reported symptoms at least once, and 14 reported at least one day with a symptom of moderate or greater severity. Daily experiences reported through the app reflected children's engagement in usual childhood experiences while also describing life with cancer, including symptoms. CONCLUSIONS: Elementary school-age children are capable of self-reporting symptoms using a symptom reporting app, providing preliminary evidence for the potential benefits and clinical relevance of mHealth resources to support health outcomes within this population. PRACTICE IMPLICATIONS: Clinicians should anticipate and support ongoing symptom management needs between clinical visits. Children's self-reported data can promote a person-centered approach to symptom assessment and management.


Assuntos
Aplicativos Móveis , Neoplasias , Telemedicina , Criança , Feminino , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Autorrelato , Avaliação de Sintomas
2.
J Am Psychiatr Nurses Assoc ; : 10783903221077292, 2022 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-35130778

RESUMO

OBJECTIVE: Suicide is of primary public concern for adolescents and young adults (AYAs) who commonly use social media platforms to express their suicidal thoughts and behaviors. Understanding how AYAs communicate their suicide-related thoughts and behaviors in texts can support early detection of suicide risk from their social media posts. Therefore, this study sought to identify themes relevant to suicide risk in AYAs and explore words or terms used by AYAs when they described suicidal thoughts and behaviors. METHOD: This secondary data analysis utilized an existing data set collected from 255 AYAs between 12 and 25 years of age, who provided brief descriptions of how they and their peers expressed their experiences of self-harm, suicidal thinking, and attempts. Text analysis was conducted using KH Coder software. Three-step theory of suicide was used to guide a content analysis to explore the key themes from the narratives. RESULTS: A word co-occurrence network with 24 clusters of words was generated from the text analysis. These word clusters were further grouped into pain or hopelessness, connectedness, and capacity to attempt suicide in the content analysis. Six subthemes corresponding to these three themes were identified to provide detailed information: psychological or physical pain, hopelessness, relationship, help seeking, methods, and outcomes. Moreover, several slang terms and acronyms (e.g., Kermit Sewage Slide, KMS) were also identified. CONCLUSIONS: The findings of this study, including themes and slang terms and acronyms, are valuable to facilitate the use of terms or phrases within social media texts to identify suicide risk in AYAs.

3.
Support Care Cancer ; 29(1): 301-310, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-32358779

RESUMO

BACKGROUND: Children with cancer have difficulty identifying and describing the multiple symptoms they experience during hospitalization and between clinical encounters. Mobile health resources, including apps, are potential solutions to support child-centric symptom reporting. This study evaluated the feasibility and acceptability of a newly developed game-based symptom-reporting app for school-age children with cancer. PROCEDURE: Nineteen school-age children (6-12 years of age) receiving treatment for cancer at a COG institution in the Intermountain West of the United States used a game-based symptom-reporting app between clinical visits. Feasibility was evaluated through a summary of actual days of app use and interaction with each of the app's features. Children and their parents participated in interviews regarding the app's acceptability. RESULTS: Children used the app a median of 4 days (range 1-12) and interacted most frequently with the symptom reporting and the drawing features. Children enjoyed aspects of the app that supported their creativity and provided choices. Parents endorsed the interactive nature of the app and the value of the child providing his/her own report. Both children and parents identified additional opportunities to enhance the child's user experience. CONCLUSION: Study results support the preliminary feasibility and acceptability of the app. Children's and parents' responses supported the developmental relevance of the app and its role in enhancing the child's autonomy and serving as an outlet for creativity. Future directions include optimizing the child user's experience and investigating the app's role as a resource to enhance shared decision-making for symptom management.


Assuntos
Aplicativos Móveis , Neoplasias/diagnóstico , Avaliação de Sintomas/métodos , Jogos de Vídeo/estatística & dados numéricos , Criança , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pais , Telemedicina/métodos
5.
Support Care Cancer ; 25(12): 3793-3806, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28718079

RESUMO

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.


Assuntos
Neoplasias/terapia , Autogestão/métodos , Adolescente , Adulto , Computadores de Mão , Estudos Transversais , Feminino , Humanos , Masculino , Aplicativos Móveis , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Cuidados Paliativos/métodos , Qualidade de Vida , Adulto Jovem
6.
Qual Life Res ; 26(10): 2729-2738, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28612308

RESUMO

PURPOSE: Childhood cancer disrupts children's daily life experiences. Eliciting children's perspectives regarding their life experiences during cancer treatment can be challenging. The purpose of this study was to characterize elementary school-age children's "good days" and "sick days" through their drawings. METHODS: This study used draw-and-tell interviews, a developmentally sensitive arts-based technique that supports children's recall and communication of information, facilitating a deeper understanding of children's personal interpretation and meaning of a given phenomenon of interest. Children were asked to draw pictures representing both a "good day" and a "sick day." Following completion of each drawing, research team members used a semi-structured interview guide to elicit children's explanations of their pictures. Content analysis techniques were used to descriptively characterize children's drawings followed by thematic analysis to identify commonalities. RESULTS: Participants were 27 children 6.33-12.83 years of age (mean 9.16 years; SD = 1.9) receiving treatment for cancer. "Good day" and "sick day" pictures were similar with regards to the presence of the child, the inclusion of other individuals, and the type of art medium used. Children's pictures characterized "good days" as being happy, outside in sunny weather, and engaged in activities. In contrast, "sick days" were characterized as feeling sad, lying down or reclining, and experiencing illness-related symptoms. CONCLUSIONS: Children's drawings illustrate their capacity to provide rich personal data related to their "good days" and "sick days." Incorporating arts-based strategies in the clinical setting may provide a child-centric strategy to understand the child's perspective and direct interventions.


Assuntos
Neoplasias/terapia , Qualidade de Vida/psicologia , Criança , Feminino , Humanos , Masculino , Prognóstico
7.
Res Nurs Health ; 38(6): 436-48, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26455729

RESUMO

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.


Assuntos
Antineoplásicos/efeitos adversos , Heurística , Neoplasias/complicações , Avaliação de Sintomas , Adolescente , Adulto , Computadores de Mão , Fadiga/etiologia , Feminino , Humanos , Masculino , Náusea/etiologia , Neoplasias/tratamento farmacológico , Adulto Jovem
8.
Pediatr Blood Cancer ; 61(11): 1996-2003, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-25066927

RESUMO

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.


Assuntos
Quimioterapia Assistida por Computador , Neoplasias/tratamento farmacológico , Aceitação pelo Paciente de Cuidados de Saúde , Adolescente , Adulto , Estudos de Viabilidade , Feminino , Humanos , Masculino , Adulto Jovem
9.
J Pediatr Hematol Oncol Nurs ; 40(2): 69-81, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36358024

RESUMO

Background: Despite initiatives to reduce central line-associated bloodstream infection (CLABSI), children and adolescents with hematologic malignancies, as well as those with relapsed disease, remain at the greatest risk for infection. This single-institution project evaluated changes in CLABSI rates following implementation of antibacterial prophylaxis with levofloxacin for patients with high-risk hematologic malignancies. Methods: Positive blood culture events meeting National Health Safety Network surveillance criteria to be classified as CLABSIs from January 1, 2006, to December 31, 2019, were included. Data were organized into four time periods for comparison based on implementation of CLABSI-reduction interventions. Conditional Poisson regression models were used to evaluate the effect of time (intervention period) on CLABSI rates with post hoc Tukey pairwise comparisons between each of the four time periods. Results: From 2006 and 2019, 227 patients experienced 310 CLABSIs. Clinically important decreases in CLABSI rates from baseline (4.84 per 1,000 line days) occurred with implementation of Children's Hospital Association (CHA) bundles (3.29 per 1,000 line days); however, this difference was not significant (p = .16). CLABSI rates decreased from baseline with the addition of formalized supportive cares (2.66 per 1,000 line days; incidence rate ratio [IRR] = 0.60; p < .01), and with the use of antibacterial prophylaxis (1.66 per 1,000 line days; IRR = 0.35; p < .01). Post hoc comparisons indicated decreased CLABSI rates with the use of antibacterial prophylaxis compared with CHA bundles alone (IRR = 0.49; p = .011) and CHA bundles plus formalized supportive cares (IRR = 0.58; p = .046). Discussion: Results demonstrate sustained success using a practice-based evidence approach to guide CLABSI-reduction interventions. Follow-up research, applying machine learning algorithms, may identify additional risk factors and inform future interventions.


Assuntos
Infecções Relacionadas a Cateter , Cateterismo Venoso Central , Levofloxacino , Adolescente , Criança , Humanos , Antibacterianos/uso terapêutico , Antibioticoprofilaxia , Infecções Relacionadas a Cateter/epidemiologia , Infecções Relacionadas a Cateter/prevenção & controle , Cateterismo Venoso Central/efeitos adversos , Leucemia/epidemiologia , Levofloxacino/uso terapêutico , Medição de Risco , Resultado do Tratamento , Masculino , Feminino , Recém-Nascido , Lactente , Pré-Escolar , Adulto Jovem , Neoplasias Hematológicas/epidemiologia
10.
J Pediatr Hematol Oncol Nurs ; 39(4): 264-272, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35791850

RESUMO

Background: Mobile health technologies can assist children to communicate their symptom experiences in a developmentally appropriate format. However, few investigations have examined how mHealth resources may also assist parents in their caregiver role. The purpose of this study was to explore how a symptom assessment app designed for school-age children with cancer could further inform parents as caregivers. Methods: Nineteen parents (18 mothers; median 35 years old, range 26-48 years) of children (6-12 years of age) receiving cancer treatment participated in the feasibility/acceptability trial of a game-based symptom assessment app. Acceptability interviews with parents were completed after each child's trial with the app. We completed a secondary analysis of the parent interviews using thematic analysis to examine how the app could support parents in their caregiving role. Results: Parents perceived the app to (1) elicit the child's voice about his/her symptom experience; (2) provide a supportive and safe environment for the child to report symptoms; and (3) create an opportunity to facilitate communication between the child, parent, and clinical team. Parents expressed a willingness for their child to represent his/her experience with the app so that they could make informed decisions regarding symptom care. Discussion: Perceived benefits of the app extended to parents as they described developing further insight into their child's cancer experience. The knowledge gained allowed parents the potential to enhance symptom communication and supportive care strategies. Future research should further evaluate how mHealth tools facilitate shared symptom management between children receiving treatment for cancer and their caregivers.


Assuntos
Aplicativos Móveis , Neoplasias , Adulto , Cuidadores , Criança , Feminino , Humanos , Masculino , Neoplasias/diagnóstico , Pais , Avaliação de Sintomas
11.
Semin Oncol Nurs ; 37(3): 151165, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34140191

RESUMO

OBJECTIVE: Highlight examples of pediatric oncology nursing's accomplishments during the past 2 decades with attention to specialized practice, patient/family education, research/evidence-based practice, and advocacy and how these efforts can be leveraged to reduce disparities in the cure and care of children and adolescents with cancer. DATA SOURCES: Review of currently published literature, guidelines, and websites documenting pediatric oncology nursing's contributions. CONCLUSION: Over the past 20 years, the collective work of pediatric oncology nurses across the world has improved the care of children with cancer and their families and brought attention to areas of disparities. IMPLICATIONS FOR NURSING PRACTICE: Although work remains to reduce disparities, current evidence from nursing science and practice is available to address disparities and guide advocacy efforts for children and their families as well as the nurses who care for them.


Assuntos
Neoplasias , Enfermagem Oncológica , Adolescente , Criança , Disparidades nos Níveis de Saúde , Humanos , Oncologia , Enfermagem Pediátrica
12.
Semin Oncol Nurs ; 37(3): 151164, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34134924

RESUMO

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.


Assuntos
Fadiga , Neoplasias , Adolescente , Criança , Fadiga/diagnóstico , Fadiga/etiologia , Fadiga/terapia , Humanos , Náusea/diagnóstico , Náusea/terapia , Neoplasias/terapia , Dor , Avaliação de Sintomas
13.
Eur J Oncol Nurs ; 52: 101949, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33813185

RESUMO

PURPOSE: To evaluate the self-reported pain experiences of school-age children with cancer participating in a feasibility trial of a game-based symptom assessment app. METHOD: Nineteen children (median: 8 years, range 6-12 years old) receiving cancer treatment were recruited to complete five days of symptom tracking between clinical visits using a symptom assessment app. Children could report pain as a general symptom with the ability to further localize pain on an avatar. Children could also describe symptoms in response to the app's free-text questions or the app's diary. Descriptive statistics characterized reports of pain frequency, severity, bother, and location. Free-text responses were examined for pain-related statements and analyzed using content analysis. RESULTS: All 19 children documented pain on at least one day of app reporting between clinical visits. Pain was most frequently recorded as of mild severity and mild bother. Participants localized pain most frequently to the head, followed by the stomach, chest, extremities, and mouth. Eleven children documented 32 qualitative statements which included rich descriptions of pain-related topics (i.e., "my port hurts a little") and location (i.e., "my vision aching"). CONCLUSIONS: These results demonstrate that school-age children with cancer are willing to describe their ambulatory pain experiences on a game-based mobile app through quantitative reports and by using narrative descriptions. Additionally, these findings can potentially guide clinicians in using multiple approaches to elicit a clinically meaningful evaluation of pain in this population.


Assuntos
Dor do Câncer , Aplicativos Móveis/estatística & dados numéricos , Neoplasias/complicações , Medição da Dor/métodos , Avaliação de Sintomas/métodos , Jogos de Vídeo/estatística & dados numéricos , Dor do Câncer/etiologia , Criança , Comunicação , Estudos de Viabilidade , Feminino , Humanos , Masculino , Autorrelato
14.
J Adolesc Young Adult Oncol ; 9(5): 579-585, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32326804

RESUMO

Purpose: This study examined health care providers' perceptions of the usefulness and ease of use of a symptom heuristics app delivered via a tablet computer as a resource for understanding symptom experiences of adolescents and young adults (AYAs) with cancer. AYAs' app-generated symptom reports were compared with providers' documentation of AYAs' symptoms. Methods: This multisite study included responses from 86 AYAs 15-29 years of age who completed the Computerized Symptom Capture Tool (C-SCAT) before two scheduled visits for chemotherapy. After each visit, their providers completed a survey addressing their perspective of: (1) the usefulness of data provided by the C-SCAT to understand the AYAs' symptom experience, and (2) the nature of the discussion of symptoms with the AYA. An electronic health record review compared symptoms that AYAs identified by using the C-SCAT with providers' documentation of symptoms. Results: One hundred forty-four complete surveys were returned after 162 visits. Fifty percent (n = 72) of responses reported that the C-SCAT helped identify the patient's symptoms, and 53% (n = 76) reported that it helped identify the patient's priority symptoms. Providers also reported higher patient engagement and more focused discussions regarding symptoms. They reported that use of the C-SCAT facilitated the development of symptom management plans. Priority symptoms were documented more frequently than nonpriority symptoms (54% vs. 32.7%; p < 0.01) as was a plan for managing priority symptoms (33.7% vs. 17.9%; p < 0.01). Conclusion: Use of the C-SCAT enhanced providers' understanding of AYAs' symptom experiences. Further research is needed to demonstrate the effectiveness of the C-SCAT as a resource to improve symptom management among AYAs with cancer.


Assuntos
Heurística/fisiologia , Adolescente , Adulto , Feminino , Humanos , Masculino , Percepção , Adulto Jovem
15.
J Pediatr Oncol Nurs ; 36(4): 244-261, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31307321

RESUMO

Children and adolescents with cancer often undergo intensive chemotherapy treatment to obtain remission and long-term survival. The pursuit of successful treatment outcomes may lead to high levels of symptom distress related to treatment side effects and toxicities. The Children's Oncology Group Nursing Discipline held a State of the Science Symposium "Symptom Assessment During Childhood Cancer Treatment" in 2018 that included reviews of evidence regarding key symptoms. The purpose of this review is to summarize and synthesize the evidence presented about the prevalence, relationships, trajectories, and associated biomarkers of selected symptoms experienced by children and adolescents during cancer treatment. Five symptoms were selected, with the focus on fatigue, sleep disturbance, and nausea/vomiting and included in Part I of the review. Using Ovid-Medline, studies published between 2008 and 2018 that focused on these specific symptoms during active chemotherapy treatment were selected. Fatigue interferes with normal developmental activities and is associated with sleep disturbances, and its pattern changes within a cycle of chemotherapy as well as across the treatment trajectory. Sleep is disrupted by the hospital environment, treatment medications, and changes in normal childhood and schedules. Disturbances of sleep persist during treatment, preventing recovery from poor quality sleep. Although pharmacologic interventions have advanced for treatment of nausea and vomiting, children and adolescents continue to struggle with this symptom. Its trajectory changes with the intensity of treatment, and over half of the patients report that they experience nausea and/or vomiting. Future research is needed to advance identification of biologic risk factors for symptoms and test effectiveness of symptom-related interventions.


Assuntos
Antineoplásicos/efeitos adversos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Fadiga/induzido quimicamente , Náusea/induzido quimicamente , Neoplasias/tratamento farmacológico , Transtornos do Sono-Vigília/induzido quimicamente , Vômito/induzido quimicamente , Adolescente , Criança , Pré-Escolar , Fadiga/tratamento farmacológico , Feminino , Humanos , Masculino , Náusea/tratamento farmacológico , Transtornos do Sono-Vigília/tratamento farmacológico , Vômito/tratamento farmacológico
16.
J Pediatr Oncol Nurs ; 36(4): 262-279, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31307323

RESUMO

Children and adolescents receiving treatment for cancer experience multiple symptoms as a consequence of their disease and its treatment that interfere with the child's quality of life. Understanding of symptom assessment in children with cancer is foundational to the work of the Children's Oncology Group Nursing Discipline, whose research aims are to address knowledge gaps including understanding illness-related distress. This article is the second of a two-part summary of current evidence addressing the assessment of symptoms frequently reported by children and adolescents receiving treatment for cancer. Studies reporting assessment of pain, sadness, and symptom clusters published between January 2008 and May 2018 were included. Forty-three publications addressed pain. Pain was highly prevalent and distressing, varied in its trajectory across a cycle of chemotherapy and across multiple cycles of treatment, and correlated with biomarkers associated with the pain response. Consequences of pain were poorer functional status and emotional health. Twenty publications addressed sadness. Sadness was the most prevalent psychosocial symptom. Its prevalence decreased over the course of treatment and over a cycle of chemotherapy. Persistent sadness was of greater severity and distress. Eight publications addressed symptom clusters. These studies identified both groups of co-occurring symptoms and groups of patients with common symptom profiles. This two-article series provides evidence for the distressing nature of symptoms among children receiving cancer treatment. Efforts to support clinicians in routine symptom assessment are needed. Additional research directed at alleviating symptoms and building resilience among the child experiencing symptoms is needed.


Assuntos
Antineoplásicos/efeitos adversos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Dor/psicologia , Tristeza/psicologia , Síndrome , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Qualidade de Vida/psicologia
17.
J Pain Symptom Manage ; 58(5): 774-783, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31319104

RESUMO

CONTEXT: Cancer and symptom experiences of adolescents and young adults (AYAs) with cancer can be highly variable, creating challenges for clinicians and researchers who seek to optimize AYAs' health outcomes. Understanding the heuristics AYAs use to designate priority symptoms can provide insight into the meaning they assign to their symptoms and self-management behaviors. OBJECTIVES: This study described the frequency and characteristics of priority symptoms. It qualitatively explored reasons for a symptom's designation as a priority symptom, perceived causes of priority symptoms, and strategies AYAs use to manage priority symptoms. METHODS: Participants in this single-group, longitudinal study reported symptoms using a heuristics-based symptom reporting tool, the Computerized Symptom Capture Tool, at two scheduled visits for chemotherapy. AYAs designated priority symptoms and responded to three short answer questions: What makes this a priority symptom?, What do you think causes it?, and What do you do to make it better? RESULTS: Eighty-six AYAs, 15-29 years of age (median 19 years), identified 189 priority symptoms. Priority symptoms were of greater severity (t = 3.43; P < 0.01) and distress (t = 4.02; P < 0.01) compared with nonpriority symptoms. Lack of energy, nausea, difficulty sleeping, and pain comprised 39% of priority symptoms. Reasons for priority designation included the impact of the symptom and the attributes of the symptom. Categories of self-management strategies included "Physical Care Strategies," "Things I take (or not)," and "Psychosocial Care Strategies." CONCLUSION: Supporting AYAs to identify their priority symptoms may facilitate a more personalized approach to care. Seeking the patient's perspective regarding priority symptoms could enhance patient-clinician collaboration in symptom management.


Assuntos
Neoplasias/terapia , Qualidade de Vida/psicologia , Autogestão , Adolescente , Adulto , Feminino , Humanos , Estudos Longitudinais , Masculino , Neoplasias/psicologia , Avaliação de Sintomas , Adulto Jovem
18.
Semin Oncol Nurs ; 35(3): 261-273, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31078340

RESUMO

OBJECTIVE: To report evidence regarding pain assessment and management for children and adolescents receiving treatment for cancer. DATA SOURCES: Published research and clinical guidelines. CONCLUSION: Children and adolescents experience multiple sources of pain across the cancer continuum. They require developmentally relevant approaches when assessing and managing pain. This review suggests that consideration of the developmental stage and age of the child are essential in both pain assessment and pain management. IMPLICATIONS FOR NURSING PRACTICE: Pediatric oncology nurses play a key role in developmentally appropriate pain assessment, identification of potential strategies to manage pain, and delivery of pharmacologic and nonpharmacologic therapies.


Assuntos
Dor do Câncer/diagnóstico , Dor do Câncer/terapia , Medição da Dor/métodos , Dor do Câncer/enfermagem , Criança , Humanos , Papel do Profissional de Enfermagem
19.
J Adolesc Young Adult Oncol ; 8(2): 122-130, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30307778

RESUMO

PURPOSE: This study evaluated oral medication adherence among adolescents and young adults (AYAs) with cancer during a trial of a smartphone-based medication reminder application (app). METHODS: Twenty-three AYAs receiving at least one prescribed, scheduled oral medication related to their outpatient cancer treatment participated in this 12-week single-group interrupted time series longitudinal design study. Baseline oral medication adherence was monitored using electronic monitoring caps for 4 weeks. Participants then used a medication reminder app and continued to have their oral medication adherence monitored for 8 weeks. Participants completed an electronically administered weekly survey addressing perceived adherence and reasons for nonadherence. RESULTS: Four adherence phenotypes were identified using visual graphical analysis of individual participants' weekly adherence: (1) high adherence during the preintervention and intervention periods (n = 13), (2) low preintervention adherence and improved adherence during the intervention period (n = 3), (3) low adherence during both periods (n = 6), and (4) high preintervention adherence and low adherence during the intervention period (n = 1). Growth curve models did not show significant changes in adherence by preintervention versus intervention trajectories (p > 0.05); however, the variance in adherence during the intervention narrowed for more highly adherent AYAs. "Forgetfulness" was the most frequently reported reason for nonadherence. CONCLUSION: Although overall adherence did not improve following use of the app, the variance decreased for more highly adherent participants. Additional or alternative interventions are needed for AYAs with persistently poor adherence. Assessment of adherence patterns may support individualized recommendation of tailored interventions.


Assuntos
Antineoplásicos/administração & dosagem , Adesão à Medicação/estatística & dados numéricos , Neoplasias/tratamento farmacológico , Sistemas de Alerta/instrumentação , Smartphone/estatística & dados numéricos , Acesso à Informação , Administração Oral , Adolescente , Adulto , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Prognóstico , Inquéritos e Questionários , Adulto Jovem
20.
J Pediatr Nurs ; 23(4): 296-309, 2008 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-18638673

RESUMO

The purpose of this literature review was to evaluate developmental diversity in studies describing physical symptoms in children and adolescents receiving cancer treatment. Developmental diversity was conceptualized as individual differences based on normal stages of human development, including cognitive, psychosocial, and physiologic aspects. Searches of Medline and the Cumulative Index of Nursing and Allied Health Literature identified 53 articles published between January 1986 and November 2006. Most studies addressed symptoms in school-aged children and adolescents; few compared symptoms across age groups. Additional measures are needed to describe younger children's symptoms. Alternate research methodologies may be appropriate to describe their symptom experiences.


Assuntos
Desenvolvimento Humano , Neoplasias/complicações , Avaliação em Enfermagem , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Pesquisa em Enfermagem Clínica/métodos , Fadiga/etiologia , Humanos , Lactente , Recém-Nascido , Náusea/etiologia , Neoplasias/enfermagem , Dor/etiologia , Vômito/etiologia
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