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1.
Pediatr Blood Cancer ; 71(5): e30913, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38337169

RESUMO

BACKGROUND: Children with cancer (ages 3-8 years) and their parents experience significant, interrelated distress associated with cancer treatment. Active music engagement (AME) uses music-based play and shared music-making to mitigate this distress. To advance our understanding about how AME works and its essential features, we interviewed parents who received the AME intervention as part of a multi-site mechanistic trial. The purpose of this qualitative analysis was to describe parents' experiences of AME for themselves and their child and to better understand how the intervention worked to lower parent-child distress. PROCEDURE: We conducted a total of 43 interviews with parents/caregivers, and purposively analyzed all interviews from underrepresented groups based on race/ethnicity and parent role. We used thematic analysis and achieved thematic redundancy after analyzing 28 interviews. RESULTS: The following statement summarizes resulting themes: Music therapists skillfully use AME to create a safe and healthy space (Theme 1), where parents/children have transformative experiences (Theme 2) that lead to learning and enactment (Theme 3) of new skills that counteract suffering (Theme 4) through empowerment, connectedness, and sustained relief. CONCLUSIONS: This work elucidates how AME works to counteract stressful qualities of cancer treatment. As parents witnessed positive and transformative changes in their child, they experienced relief and reported shifts in their perspective about cancer treatment. This led to learning and use of music as a coping strategy that extended beyond therapist-led sessions. Accessible, music-based interventions, like AME, offer a developmentally appropriate and effective way to support parents and young children during treatment.


Assuntos
Musicoterapia , Música , Neoplasias , Pré-Escolar , Humanos , 60670 , Musicoterapia/métodos , Neoplasias/terapia , Pais , Estresse Psicológico/terapia , Criança , Estudos Multicêntricos como Assunto , Ensaios Clínicos como Assunto
2.
Palliat Support Care ; 22(2): 274-280, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37387259

RESUMO

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.


Assuntos
Neoplasias , Autogestão , Humanos , Adolescente , Adulto Jovem , Inquéritos e Questionários , Psicometria , Reprodutibilidade dos Testes , Neoplasias/complicações , Neoplasias/terapia
3.
Integr Cancer Ther ; 22: 15347354231218266, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38145309

RESUMO

OBJECTIVE: This trial examined the effects of proximal/distal mediators and moderators of an Active Music Engagement (AME) intervention on young child/parent distress, quality of life, and family function outcomes. METHODS: Child/parent dyads (n = 125) were randomized to AME or Audio-storybooks attention control condition. Each group received 3 sessions with a credentialed music therapist for 3 consecutive days with data collection at baseline, post-intervention (T2), and 30-days later (T3). Potential proximal mediators included within session child and parent engagement. Potential distal mediators included changes in perceived family normalcy, parent self-efficacy, and independent use of play materials. Potential moderators included parent/child distress with prior hospitalizations, parent traumatic stress screener (PCL-6), and child age. Outcomes included child emotional distress and quality of life; parent emotion, traumatic stress symptoms (IES-R), well-being; and family function. Mediation effects were estimated using ANCOVA, with indirect effects estimated using the percentile bootstrap approach. Moderation effects were tested by including appropriate interaction terms in models. RESULTS: No significant mediation effects were observed. Child distress with prior hospitalizations moderated AME effects for IES-R intrusion subscale scores at T2 (P = .01) and avoidance subscale scores at T3 (P = .007). Traumatic stress screener scores (PCL-6) moderated intervention effects for IES-R hyperarousal subscale scores at T2 (P = .01). There were no moderation effects for child age. CONCLUSIONS: AME is a promising intervention for mitigating traumatic stress symptoms and supporting well-being in parents of children with cancer, particularly for parents who screen high for traumatic stress and whose children are more highly distressed with hospitalization.


Assuntos
Musicoterapia , Neoplasias , Pais , Transtornos de Estresse Traumático , Criança , Pré-Escolar , Humanos , Emoções , Música , Neoplasias/psicologia , Pais/psicologia , Qualidade de Vida , Transtornos de Estresse Traumático/etiologia , Transtornos de Estresse Traumático/psicologia , Transtornos de Estresse Traumático/terapia
4.
BMC Complement Med Ther ; 23(1): 90, 2023 Mar 27.
Artigo em Inglês | MEDLINE | ID: mdl-36973774

RESUMO

BACKGROUND: Music therapy is a standard palliative care service in many pediatric and adult hospitals; however, most research has focused on the use of music to improve psychosocial dimensions of health, without considering biological dimensions. This study builds on prior work examining psychosocial mechanisms of action underlying an Active Music Engagement (AME) intervention, designed to help manage emotional distress and improve positive health outcomes in young children with cancer and parents (caregivers), by examining its effects on biomarkers of stress and immune function. METHODS: This two-group randomized controlled trial (R01NR019190) is designed to examine biological mechanisms of effect and dose-response relationships of AME on child/parent stress during the consolidation phase of Acute B- or T-cell Lymphoblastic Leukemia (ALL) and T-cell Lymphoblastic Lymphoma (TLyLy) treatment. Child/parent dyads (n = 228) are stratified (by age, site, risk level) and randomized in blocks of four to the AME or attention control condition. Each group receives one session (30-minutes AME; 20-minutes control) during weekly clinic visits (4 weeks standard risk B-cell ALL; 8 weeks high risk B-cell ALL/T-cell ALL/TLyLy). Parents complete questionnaires at baseline and post-intervention. Child/parent salivary cortisol samples are taken pre- and post-session (sessions 1-4). Child blood samples are reserved from routine draws before sessions 1 and 4 (all participants) and session 8 (high risk participants). We will use linear mixed models to estimate AME's effect on child/parent cortisol. Examining child/parent cortisol as mediators of AME effects on child and parent outcomes will be performed in an ANCOVA setting, fitting the appropriate mediation models using MPlus and then testing indirect effects using the percentile bootstrap approach. Graphical plots and non-linear repeated measures models will be used to examine dose-response relationship of AME on child/parent cortisol. DISCUSSION: During pediatric cancer treatment there are special challenges that must be considered when measuring cortisol and immune function. In this manuscript we discuss how we addressed three specific challenges through our trial design. Findings from this trial will increase mechanistic understanding of the effects of active music interventions on multiple biomarkers and understanding of dose-response effects, with direct implications for clinical practice. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04400071.


Assuntos
Linfoma , Música , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adulto , Humanos , Criança , Pré-Escolar , Hidrocortisona , Pais/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Biomarcadores , Ensaios Clínicos Controlados Aleatórios como Assunto
5.
Integr Cancer Ther ; 21: 15347354221140491, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36510388

RESUMO

Treatment fidelity is the use of methodological strategies to monitor and enhance reliability and validity of behavioral intervention trials. Despite availability of guidelines and checklists, treatment fidelity remains underreported, hindering evaluation, interpretation, and cross-study comparisons. Treatment fidelity is particularly important for music interventions given the inherent complexity of musical stimuli and flexibility required for tailored delivery. The purpose of this paper is to define and describe treatment fidelity strategies for our trial of a music-based play intervention for young children with cancer and parents grounded in the NIH Behavior Change Consortium Treatment Fidelity Recommendations. We report strategies for all 5 areas: study design, training providers, delivery of treatment, receipt of treatment, and enactment of treatment skills. We also discuss 4 challenges our team encountered, including: (1) standardizing live music delivery, (2) defining boundaries for tailored intervention delivery, (3) managing extended time between participants, and (4) minimizing risk for bias. This paper expands on current fidelity literature and may provide a working model for other investigators examining dyadic and/or active music interventions.


Assuntos
Terapia Comportamental , Neoplasias , Criança , Humanos , Pré-Escolar , Reprodutibilidade dos Testes , Neoplasias/terapia , Projetos de Pesquisa
6.
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
7.
Artigo em Inglês | MEDLINE | ID: mdl-35722866
8.
J Pediatr Hematol Oncol Nurs ; 39(1): 49-59, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35722869

RESUMO

Background: Diagnosis and treatment of cancer and blood disorders in childhood, adolescence and young adulthood has a significant impact on patients and families. The Psychosocial Standards of Care project, initiated in 2012, resulted in 15 Psychosocial Standards (PSS) that guide the care patients and families receive throughout treatment. As members of the multidisciplinary psychosocial care team, music therapists play an important role in the advancing the PSS. Most surveys have focused on other commonly provided services (e.g., social work, child life), leaving gaps in our understanding about the availability and use of music therapy services to advance PSS. This paper offers an initial description of how music therapy services contribute to the provision of care under these Standards. Methods: We analyze how music therapy services promote PSS through synthesis of a music therapy clinical practice survey, published literature, and scope of practice documents. A brief overview of music therapy services structure, PSS that music therapy services currently address, and two clinical program descriptions are included. Results: Music therapy services address 9 of the 15 PSS and are well integrated within the larger program of psychosocial care. Findings suggest integration of music therapy services can help ensure personalized, comprehensive care and efficient use of often-limited psychosocial care resources. Discussion: Nurses, as members of the psychosocial and medical teams are uniquely positioned to identify patient and family care needs and refer patients for services. Understanding how music therapy services address PSS and most importantly, the needs of patients and families, will optimize their care.


Assuntos
Doenças Hematológicas , Musicoterapia , Reabilitação Psiquiátrica , Adolescente , Adulto , Criança , Família , Humanos , Oncologia , Musicoterapia/métodos , Inquéritos e Questionários , Adulto Jovem
9.
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
10.
Cancer Nurs ; 45(4): 306-315, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34966060

RESUMO

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.


Assuntos
Neoplasias , Leucemia-Linfoma Linfoblástico de Células Precursoras , Adolescente , Humanos , Neoplasias/complicações , Neoplasias/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Avaliação de Sintomas , Adulto Jovem
11.
Cancer Nurs ; 45(4): 316-331, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34817419

RESUMO

BACKGROUND: Parents of adolescents and young adults (AYAs) with cancer offer primary support to their children and often experience their own high levels of distress, affecting parent-AYA communication and quality of life. OBJECTIVE: To reduce parent distress and improve communication during high-risk cancer treatment, we examined efficacy of a self-care and communication intervention for parents and indirect benefit for AYAs receiving a therapeutic music video (TMV) intervention. METHODS: In this study, we conducted a multisite, randomized controlled trial with AYAs and parents enrolled as dyads (n = 110). Parents were randomized to intervention or low-dose control; all AYAs received TMV. Data collection occurred at baseline, 2 weeks post intervention (T2), and 90 days post intervention (T3). RESULTS: There were no significant between-group differences on primary outcomes for parents or AYAs. We did find significant differences favoring the parent intervention group on parenting confidence at T2 and marginally better outcomes for family adaptability/cohesion at T3. Both groups exhibited significant within-group improvement for parent distress (state anxiety, T3; perceived stress, T2 and T3; mood, T3), state anxiety (T2) intervention only, and family strengths control group only. Qualitative data demonstrate the parent intervention raised self-awareness and parent confidence in the short term. CONCLUSION: Parents found their intervention helpful. Absence of significant results may be due to short intervention duration, need for tailored content, underpowered sample, and potential indirect parent benefit from AYA participation in TMV. The parent intervention did not provide an indirect benefit for AYAs. IMPLICATIONS FOR NURSING: Parents identified their own need for communication and support from nurses. Nurses can optimize AYA care by attending to parent needs through supportive listening and encouraging self-care.


Assuntos
Neoplasias , Autocuidado , Adolescente , Criança , Comunicação , Humanos , Neoplasias/terapia , Poder Familiar , Pais , Qualidade de Vida , Adulto Jovem
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.
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
14.
Front Psychol ; 11: 587871, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33224077

RESUMO

This paper reports the results of a single case design pilot study of a music therapy intervention [the Active Music Engagement (AME)] for young children (age 3.51 to 4.53 years) undergoing hematopoietic stem cell transplantation (HCST) and their caregivers. The primary aims of the study were to determine feasibility/acceptability of the AME intervention protocol and data collection in the context of HCST. Secondary aims were to examine caregivers' perceptions of the benefit of AME and whether there were changes in child and caregiver cortisol levels relative to the AME intervention. Results indicated that the AME could be implemented in this context and that data could be collected, though the collection of salivary cortisol may constitute an additional burden for families. Nevertheless, data that were collected suggest that families derive benefit from the AME, which underscores the need for devising innovative methods to understand the neurophysiological impacts of the AME.

15.
J Pediatr Oncol Nurs ; 37(5): 330-337, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32646270

RESUMO

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.


Assuntos
Oncologia/organização & administração , Neoplasias/enfermagem , Pesquisa em Enfermagem/organização & administração , Equipe de Enfermagem/organização & administração , Enfermagem Oncológica/organização & administração , Adolescente , Adulto , Humanos , Pessoa de Meia-Idade , Estados Unidos , Adulto Jovem
16.
J Cancer Surviv ; 14(5): 660-665, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32394044

RESUMO

PURPOSE: To create a community of learning involving primary care providers and subspecialist to enhance providers' knowledge regarding care of adult childhood cancer survivors (CCS). METHODS: A stepwise approach was used to develop educational opportunities for providers. This process started with a local/regional in-person conference, which informed a webinar series, and resulted in the development of enduring material using a dynamic learning management system. RESULTS: Participants in all three learning platforms had an increase in knowledge from baseline regarding care for adult CCS. Majority of participants at the in-person conference and webinar series were oncology or other specialty providers. The enduring dynamic learning management system successfully reached a variety of providers and other allied health providers across the country. There was a slightly higher rate of participation on this platform by primary care providers of 12.5%. CONCLUSIONS: Care providers' knowledge of survivorship needs of adult CCS can be increased by multiple forms of instruction. However, the dynamic learning management system was most successful at reaching a broad audience. Advertisement through local and national organizations was not as successful as anticipated. Additional strategies are needed to successfully engage providers, specifically primary care providers (PCPs). IMPLICATIONS FOR CANCER SURVIVORS: The professional development needs of primary care providers regarding care of adult CCS is well recognized. A dynamic learning management system may represent the most convenient and accessible way to provide education, but new strategies for increasing providers' awareness and engagement are required. The goal of improving care of adult CCS requires increased providers knowledge.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Pessoal de Saúde/educação , Implementação de Plano de Saúde , Oncologia/educação , Neoplasias/terapia , Atenção Primária à Saúde/normas , Especialização/normas , Criança , Escolaridade , Feminino , Humanos , Aprendizagem , Masculino , Padrões de Prática Médica/normas , Sobrevivência
17.
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
18.
J Altern Complement Med ; 26(5): 424-434, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32073877

RESUMO

Objective: Primary aims of the proposed protocol are to determine the feasibility/acceptability of the active music engagement intervention protocol during hematopoietic stem cell transplantation (HSCT) and clinical feasibility/acceptability of the biological sample collection schedule. Design: The authors propose a single-case, alternating treatment design to compare levels of child and caregiver cortisol in blood and saliva collected on alternating days, when the dyad receives and does not receive AME sessions. Included are the scientific rationale for this design and detailed intervention and sample collection schedules based on transplant type. Setting/Location: Pediatric inpatient HSCT unit. Subjects: Eligible participants are dyads of children 3-8 years old, hospitalized for HSCT, and their caregiver. Children with malignant and nonmalignant conditions will be eligible, regardless of transplant type. Intervention: AME intervention is delivered by a board-certified music therapist who tailors music-based play experiences to encourage active engagement in, and independent use of, music play to manage the inter-related emotional distress experienced by children and their caregivers during HSCT. Dyads will receive two 45-min AME sessions each week during hospitalization. Outcome Measures: Eight collections of blood (child) and saliva (child/caregiver) will be performed for cortisol measurement. The authors will also collect self-report and caregiver proxy measures for dyad emotional distress, quality of life, and family function. At study conclusion, qualitative caregiver interviews will be conducted. Results: Planned analyses will be descriptive and evaluate the feasibility of participant recruitment, cortisol collection, planned evaluations, and AME delivery. Analysis of qualitative interviews will be used to gain an understanding about the ease/burden of biological sample collection and any perceived benefit of AME. Conclusions: Behavioral intervention studies examining biological mechanisms of action in pediatric transplant populations are rare. Findings will provide important information about the feasibility/acceptability of collecting cortisol samples during a high-intensity treatment and advance understanding about the use of active music interventions to mitigate child/caregiver distress during the transplant period.


Assuntos
Cuidadores/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Hidrocortisona/análise , Musicoterapia/métodos , Estresse Psicológico/terapia , Biomarcadores/análise , Criança , Pré-Escolar , Estudos de Viabilidade , Humanos , Projetos Piloto , Projetos de Pesquisa , Inquéritos e Questionários
19.
J Adolesc Young Adult Oncol ; 9(3): 354-358, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31851551

RESUMO

Purpose: Young adults (YAs) are at greater risk for cancer-related financial toxicity than other age groups. They are simultaneously dealing with cancer and normative developmental tasks (establishing independence, completing education, and beginning careers) and may go without needed medications, follow-up, and even food or housing because of cancer-related financial toxicity. This study explored the financial resources required for YAs to move forward after cancer treatment. Methods: To identify and describe the financial challenges experienced by YA cancer survivors and the impact on their lives and overall development, we used secondary analysis of essays written by Samfund grant recipients. Directed content analysis allowed identification of salient categories from the essays of 104 YAs aged 17-39 years who received financial assistance between 2012 and 2013. Permission was secured before analysis. Results: To move forward after cancer treatment, YAs state that they require enough financial resources to meet immediate needs, support future goals, facilitate self-care, and enable normative development. Conclusions: Assessing the financial status of YAs with cancer is vital because many YAs lack resources to fund their basic needs and to move forward with independent living after cancer therapy. Interventions to identify and mitigate financial toxicity in YAs have the potential to reduce treatment nonadherence and poor follow-up due to insufficient financial resources in this at-risk population.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Apoio Financeiro , Neoplasias/economia , Adolescente , Adulto , Feminino , Humanos , Masculino , Qualidade de Vida , Adulto Jovem
20.
J Music Ther ; 57(1): 3-33, 2020 Feb 25.
Artigo em Inglês | MEDLINE | ID: mdl-31802124

RESUMO

This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.


Assuntos
Transplante de Células-Tronco Hematopoéticas/psicologia , Musicoterapia , Resiliência Psicológica , Gravação em Vídeo , Adaptação Psicológica , Adolescente , Ansiedade/prevenção & controle , Criança , Feminino , Células-Tronco Hematopoéticas , Humanos , Masculino , Música , Narração , Neoplasias/terapia , Apoio Social , Estresse Psicológico/prevenção & controle , Adulto Jovem
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