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1.
J Adolesc Young Adult Oncol ; 10(3): 266-271, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33147093

RESUMO

Purpose: The study used a cross-sectional descriptive design to explore the prevalence and correlates of religious/spiritual (R/S) coping and struggle in young adults (YAs) during the first 2 months of cancer treatment. Methods: Self-report measures of R/S coping, R/S struggle, depression, quality of life (QoL), intensity of treatment experience, and spiritual/religious identification and practices were obtained using REDCap Survey. Self-report of selected demographic characteristics (age, ethnicity, race, gender, education, occupational status, marital status, parental status, and cancer diagnosis) was also obtained. Results: The prevalence of positive R/S coping was high and higher compared with negative R/S coping. Female gender was associated with more R/S struggle, lower QoL, and higher depression. The Religious and Spiritual Struggles Scale and both the negative and positive R/S coping scale of the Brief RCOPE were significantly positively correlated, despite focusing on differing types of spiritual struggle/distress. Conclusions: Both positive R/S coping and R/S struggle occur in YAs during the first 2 months of cancer treatment. Further research to elucidate the experiences of YAs with cancer, and interventions to promote effective coping, will promote holistic cancer care for this population.


Assuntos
Neoplasias , Qualidade de Vida , Adaptação Psicológica , Estudos Transversais , Feminino , Humanos , Masculino , Neoplasias/terapia , Espiritualidade , Adulto Jovem
2.
J Adolesc Young Adult Oncol ; 8(5): 540-546, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31120363

RESUMO

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.


Assuntos
Conselhos de Planejamento em Saúde/normas , Oncologia/ética , Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto Jovem
3.
Oncol Nurs Forum ; 45(1): 69-76, 2018 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-29251285

RESUMO

OBJECTIVES: To explore the feasibility and acceptability of use of a smartphone medication reminder application to promote adherence to oral medications among adolescents and young adults (AYAs) with cancer.
. SAMPLE & SETTING: 23 AYAs with cancer from a Children's Oncology Group-affiliated children's hospital and a National Cancer Institute-designated comprehensive cancer center in Salt Lake City, UT.
. METHODS & VARIABLES: Participants were asked to use the application for eight weeks. Data on application usage were obtained from a cloud-based server hosted by the application developers. Weekly self-report questionnaires were completed. Feasibility was assessed through participants' usage and responses. Acceptability was assessed through participants' perceived ease of use and usefulness.
. RESULTS: Almost all participants used the application at least once. More than half reported that they took their medications immediately when they received reminders. Participants also reported that the application was easy to set up and use, and that it was useful for prompting medication taking.
. IMPLICATIONS FOR NURSING: Nurses could continue to test the efficacy of integrating e-health modalities, such as smartphone applications, into efforts to promote medication adherence.


Assuntos
Antineoplásicos/uso terapêutico , Adesão à Medicação/estatística & dados numéricos , Neoplasias/tratamento farmacológico , Sistemas de Alerta/instrumentação , Sistemas de Alerta/estatística & dados numéricos , Autocuidado/instrumentação , Smartphone , Adolescente , Adulto , Feminino , Humanos , Masculino , Autocuidado/métodos , Inquéritos e Questionários , Telemedicina/instrumentação , Telemedicina/métodos , Utah , Adulto Jovem
4.
J Pediatr Oncol Nurs ; 34(5): 331-341, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28614971

RESUMO

This study assessed the feasibility of studying animal-assisted activities (AAA) in inpatient pediatric oncology and collected preliminary data on potential benefits of AAA for this population. Patients at a large pediatric hospital were identified using electronic medical records and approached with physician approval. Patients completed surveys before and after a therapy dog visit in their private hospital room. Data on infections were ascertained by electronic medical record review. Provider surveys were placed in provider common areas and distributed through a link in an e-mail. We summarized resultsusing descriptive statistics and estimated mean changes in pre- and postintervention distress and conducted hypothesis tests using the paired t test. The study population (mean age = 12.9 years) consisted of 9 females and 10 males. Following the therapy dog visit, patients had lower distress and significant decreases in worry, tiredness, fear, sadness, and pain. Providers were generally supportive of the intervention. Eight patients developed infections during the 14 days after the dog visit but none could be clearly attributed to the therapy dog visit. The study's primary limitation was that there was no control group. However, results support the feasibility of and need for future studies on AAA in pediatric oncology.


Assuntos
Terapia Assistida com Animais , Criança Hospitalizada/psicologia , Neoplasias/psicologia , Satisfação do Paciente , Adolescente , Animais , Criança , Cães , Feminino , Hospitais Pediátricos , Humanos , Masculino , Neoplasias/enfermagem , Neoplasias/terapia , Enfermagem Pediátrica , Projetos Piloto , Washington
5.
Psychooncology ; 26(2): 270-277, 2017 02.
Artigo em Inglês | MEDLINE | ID: mdl-26567771

RESUMO

BACKGROUND: This study describes the prevalence of religious or spiritual (R/S) struggle in long-term survivors after hematopoietic cell transplantation (HCT), demographic and medical correlates of R/S struggle, and its associations with depression and quality of life. METHODS: Data were collected in conjunction with an annual survey of adult (age ≥18 years) survivors of HCT. Study measures included R/S struggle (negative religious coping, NRC, from Brief RCOPE), measures of quality of life (subscales from 36-item Short Form Health Survey and McGill), and the Patient Health Questionnaire 8. R/S struggle was defined as any non-zero response on the NRC. Factors associated with R/S struggle were identified using multi-variable logistic regression models. RESULTS: The study analyzed data from 1449 respondents who ranged from 6 months to 40 years after HCT. Twenty-seven percent had some R/S struggle. In a multi-variable logistic regression model, R/S struggle was associated with greater depression and poorer quality of life. R/S struggle was also associated with younger age, non-White race, and self-identification as either religious but not spiritual or spiritual but not religious. R/S struggle was not associated with any medical variables, including time since transplant. CONCLUSIONS: Religious or spiritual struggle is common among HCT survivors, even many years after HCT. Survivors should be screened and, as indicated, referred to a professional with expertise in R/S struggle. Further study is needed to determine causal relationships, longitudinal trajectory, impact of struggle intensity, and effects of R/S struggle on health, mood, and social roles for HCT survivors. Copyright © 2015 John Wiley & Sons, Ltd.


Assuntos
Sobreviventes de Câncer/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Qualidade de Vida/psicologia , Religião e Psicologia , Espiritualidade , Adaptação Psicológica , Adulto , Depressão/psicologia , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Adulto Jovem
6.
J Adolesc Young Adult Oncol ; 2(4): 167-174, 2013 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-24380035

RESUMO

Within the past decade, the discipline of adolescent and young adult (AYA) oncology has taken root in the United States. It arose from the observation that survival improvements for 15-39-year-olds have lagged behind those of both children and older adults. Rapid progress in this new area has resulted from energetic work by researchers, clinicians, and non-profit organizations focusing on AYA-aged cancer patients and survivors. The term "AYA" is now well recognized within both pediatric and medical oncology, and AYA-specific aims are increasingly included in clinical trials and also basic and translational oncology research. The AYA oncology movement in the United States was spearheaded by the LIVESTRONG Young Adult Alliance (the Alliance), a coalition of AYA-focused non-profit organizations and academic institutions that has recently transitioned into a successor organization-Critical Mass: The Young Adult Cancer Alliance, composed of individual AYAO professionals. The work of groups such as the Alliance/Critical Mass and key collaborators-including the National Cancer Institute, National Comprehensive Cancer Network, Children's Oncology Group, and advocacy organizations-provides a useful platform for the discussion of progress in AYA oncology in the United States, including advances in (1) research and tool development; (2) public and professional education; (3) advocacy and patient support; (4) awareness; and (5) service delivery. AYA oncology programs are now burgeoning dramatically throughout the United States, and many well-established U.S. programs share distinctive features in clinical programming. The United States is now entering an era of larger-scale coordinated efforts in research, advocacy, and clinical care for AYAs with cancer.

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