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1.
BJUI Compass ; 5(6): 593-601, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38873351

RESUMO

Introduction: Although prostate magnetic resonance imaging (MRI) is commonly used in the diagnosis, staging and active surveillance of prostate cancer, little is known about patient perspectives on MRI. Methods: We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- and intermediate-risk prostate cancer managed with active surveillance. Interviews focused on experiences with and knowledge of prostate MRI and MRI-ultrasound fusion biopsy during active surveillance. We purposively sampled patients who received prostate MRI as part of their clinical care, conducted interviews until reaching thematic saturation and performed conventional content analysis to analyse data. Results: Twenty patients aged 51-79 years (mean = 68 years) participated in the study. At diagnosis, 17 (85%) had a Gleason grade group 1, and three (15%) had a grade group 2 tumour. Overall, participants viewed prostate MRI as a valuable tool that accurately localizes and monitors prostate cancer over time, and they considered prostate MRI central to active surveillance monitoring. We identified five thematic categories related to MRI use: (1) the experiential aspects of undergoing an MRI scan; (2) the experience of visualizing one's own prostate and prostate cancer; (3) adequacy of provider explanations of MRI results; (4) confidence in prostate MRI in decision-making; and (5) the role of prostate MRI in longitudinal follow-up, including an interest in using MRI to modify the timing of, or replace, prostate biopsy. Conclusion: Patients value prostate MRI as a tool that enhances their confidence in the initial diagnosis and monitoring of prostate cancer. This work can inform future studies to optimize patient experience, education and counselling during active surveillance for prostate cancer.

2.
J Pain Symptom Manage ; 68(3): 308-318, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38825257

RESUMO

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.


Assuntos
Disseminação de Informação , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Estados Unidos , Pesquisa Biomédica , Bases de Dados Factuais
3.
BJUI Compass ; 5(1): 142-149, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38179031

RESUMO

Background: Tissue-based gene expression (genomic) tests provide estimates of prostate cancer aggressiveness and are increasingly used for patients considering or engaged in active surveillance. However, little is known about patient experiences with genomic testing and its role in their decision-making. Methods: We performed a qualitative study consisting of in-depth, semi-structured interviews of patients with low- or favourable-intermediate-risk prostate cancer managed with active surveillance. We purposively sampled to include patients who received biopsy-based genomic testing as part of clinical care. The interview guide focused on experiences with genomic testing during patients' decision-making for prostate cancer management and understanding of genomic test results. We continued interviews until thematic saturation was reached, iteratively created a code key and used conventional content analysis to analyse data. Results: Participants' (n = 20) mean age was 68 years (range 51-79). At initial biopsy, 17 (85%) had a Gleason grade group 1, and 3 (15%) had a grade group 2 prostate cancer. The decision to undergo genomic testing was driven by both participants and physicians' recommendations; however, some participants were unaware that testing had occurred. Overall, participants understood the role of genomic testing in estimating their prostate cancer risk, and the test results increased their confidence in the decision for active surveillance. Participants had some misconceptions about the difference between tissue-based gene expression tests and germline genetic tests and commonly believed that tissue-based tests measured hereditary cancer risk. While some participants expressed satisfaction with their physicians' explanations, others felt that communication was limited and lacked sufficient detail. Conclusion: Patients interact with and are influenced by the results of biopsy-based genomic testing during active surveillance for prostate cancer, despite gaps in understanding about test results. Our findings indicate areas for improvement in patient counselling in order to increase patient knowledge and comfort with genomic testing.

4.
Oncol Nurs Forum ; 50(5): 625-633, 2023 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-37677764

RESUMO

OBJECTIVES: To explore the correlation between health-illness transition (HIT) experiences and distress among patients with pancreatic cancer. SAMPLE & SETTING: 55 patients with a diagnosis of pancreatic cancer receiving chemotherapy at a tertiary cancer center in New York. METHODS & VARIABLES: A prospective correlational study was performed to explore the frequency, extent, and management of HITs. HITs were evaluated using the Measurement of Transitions in Cancer Scale, and distress was measured with the National Comprehensive Cancer Network Distress Thermometer. RESULTS: All patients experienced at least one HIT. The extent of HITs decreased over time. Patients reported that they managed HITs moderately well. There was a significant correlation between unmanaged HITs and distress. As distress increased, the extent of the physical and emotional HITs increased and management worsened. IMPLICATIONS FOR NURSING: HITs are ubiquitous among patients diagnosed with pancreatic cancer. Associated distress inhibits management. Nurses are well suited to assess for potential HITs and to support self-management of HITs.


Assuntos
Neoplasias Pancreáticas , Humanos , Estudos Prospectivos , Emoções , New York
5.
J Palliat Med ; 26(12): 1698-1701, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37585604

RESUMO

Background: State policy-making to address disparities in access to and quality of palliative care is increasing. Yet, there is no mechanism to systematically assess palliative care policies nationally. Methods: We describe the development of the Palliative Care Law and Policy GPS by the Center to Advance Palliative Care and the Yale Solomon Center for Health Law and Policy. The GPS is an online, searchable repository of national palliative care policies. We developed the GPS by conducting a systematic search of Lexis+, LegiScan, and state health departments for palliative care-related statutes and proposed legislation, categorizing policies into workforce, payment, quality/standards, clinical skill-building, public awareness, telehealth, and pediatric palliative care, and creating an interactive website. Conclusions and Implications: The GPS is a critical tool that can advance palliative care research, practice, and policy. Next steps include the expansion of data from 2010 onward as well as gathering state-level regulations and partially automating search and updating functions.


Assuntos
Cuidados Paliativos , Telemedicina , Humanos , Criança , Competência Clínica , Recursos Humanos , Políticas , Política de Saúde
6.
Cancer Nurs ; 46(3): E169-E180, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35353749

RESUMO

BACKGROUND: Breast cancer patients may not be well-informed about palliative care, hindering its integration into cancer self-management. OBJECTIVE: The aim of this study was to test Managing Cancer Care: A Personal Guide (MCC-PT), an intervention to improve palliative care literacy and cancer self-management. METHODS: This was a single-blind pilot randomized controlled trial to evaluate the feasibility/acceptability and intervention effects of MCC-PT on palliative care literacy, self-management behaviors/emotions, and moderation by demographic/clinical characteristics. We enrolled 71 stages I to IV breast cancer patients aged at least 21 years, with >6-month prognosis at an academic cancer center. Patients were randomized to MCC-PT (n = 32) versus symptom management education as attention-control (n = 39). At baseline, 1 month, and 3 months, participants completed the Knowledge of Care Options Test (primary outcome), Control Preferences Scale, Goals of Care Form, Medical Communication Competence Scale, Measurement of Transitions in Cancer Scale, Chronic Disease Self-efficacy Scale, Hospital Anxiety and Depression Scale, and the Mishel Uncertainty in Illness Scale. RESULTS: Mean participant age was 51.5 years (range, 28-74 years); 53.5% were racial/ethnic minority patients, and 40.8% had stage III/IV cancer. After adjusting for race/ethnicity, MCC-PT users improved their palliative care literacy with a large effect size (partial η2 = 0.13). Patients at late stage of disease showed increased self-management (partial η2 = 0.05) and reduced anxiety (partial η2 = 0.05) and depression (partial η2 = 0.07) with medium effect sizes. CONCLUSIONS: Managing Cancer Care: A Personal Guide is feasible and appears most effective in late-stage cancer. Research is needed to elucidate relationships among cancer stage, race/ethnicity, and self-management outcomes. IMPLICATIONS FOR PRACTICE: Integration of palliative care into cancer care can assist in creation of appropriate self-management plans and improve emotional outcomes.


Assuntos
Neoplasias da Mama , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Autogestão , Adulto , Idoso , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Estudos de Viabilidade , Letramento em Saúde/estatística & dados numéricos , Estadiamento de Neoplasias , Projetos Piloto , Método Simples-Cego , Resultado do Tratamento , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração
7.
J Fam Nurs ; 29(1): 99-114, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35670155

RESUMO

Self- and family management (SFM) refers to patients' and family caregivers' activities to co-manage illness. Two barriers to SFM are low palliative care literacy and lack of goals of care communication, which potentially result in SFM activities that are unsupportive of patients' goals. Managing Cancer Care: A Caregiver's Guide (MCC-CG) aims to improve palliative care literacy and communication within a SFM training program. In this pilot randomized trial, we enrolled breast cancer family caregivers and collected data at 0, 1, and 3 months on palliative care literacy, SFM engagement, communication, transitions management, uncertainty, caregiver burden, and caregiver competence/personal gain. Participants (n = 35) had a mean age of 54 (range: 18-81) and were 66% white and 34% racial/ethnic minorities. Intervention participants improved their palliative care literacy and SFM engagement, reduced uncertainty and caregiver burden, increased competence/personal gain, and had more goals of care conversations over time. MCC-CG has preliminary efficacy, warranting further study.


Assuntos
Neoplasias da Mama , Cuidados Paliativos , Humanos , Pessoa de Meia-Idade , Feminino , Cuidadores/educação , Alfabetização , Projetos Piloto
8.
J Pain Symptom Manage ; 65(1): 6-15, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36206949

RESUMO

CONTEXT: Consequent to increasing COVID-19 infection rates, the Palliative Care (PC) service at a large New England hospital shifted from in-person to telehealth-delivered PC (TPC). OBJECTIVES: We compared the quality of TPC to in-person PC during the early COVID-19 pandemic. METHODS: We conducted an electronic health record review of PC consultations of patients hospitalized during three periods: pre-COVID January, 2020-February, 2020 (in-person); peak-COVID March, 2020-June, 2020 (majority TPC); and post-peak September, 2020-October, 2020 (majority in-person). We examined the relationship between these periods and PC delivery characteristics and quality measures using descriptive and bivariate statistics. RESULTS: Of 377 patients, 50 were pre-COVID (TPC=0%), 271 peak-COVID (TPC=79.3%), and 56 post-peak (TPC<2%) (representation of PC consult: pre- and post-peak=samples; peak-COVID=all consults). Mean age was 69.3 years (standard deviation=15.5), with 54.9% male, 68.7% White, and 22.8% Black. Age and sex did not differ by period. PC consultations were more likely for goals of care (pre=30.0% vs. peak=53.9% vs. post=57.1%; P = 0.005) or hospice (4.0% vs. 14.4% vs. 5.4%, P = 0.031) during peak-COVID compared to pre-COVID. Rates of assessment of physical (98.0% vs. 63.5% vs. 94.6%, P < 0.001) and psychological symptoms (90.0% vs. 33.1% vs. 67.9%, P < 0.001) were lower during peak relative to pre-COVID and post-peak periods. There were no differences in assessment of patients' social needs, family burden, or goals of care across periods. CONCLUSION: The PC service provided high-quality inpatient PC using TPC despite significant strain during the early COVID-19 pandemic. Developing and testing strategies to promote comprehensive symptom control using TPC remains a priority to adjust to potential unmet PC needs.


Assuntos
COVID-19 , Hospitais para Doentes Terminais , Telemedicina , Humanos , Masculino , Idoso , Feminino , Cuidados Paliativos , Pacientes Internados , Pandemias
9.
Int J Palliat Nurs ; 28(8): 378-387, 2022 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-36006792

RESUMO

BACKGROUND: In Israel, there is a need to improve quality of life and health outcomes among patients and families facing cancer. Increasing awareness of, literacy about, and availability of palliative care may further this goal. AIMS: This study aimed to adapt a palliative care-focused cancer self- and family management intervention developed in the US for use in Israel. METHODS: The Managing Cancer Care (MCC) psycho-educational intervention is comprised of Managing Cancer Care: A Personal Guide (MCC-PT©) for patients and Managing Cancer Care: A Caregiver's Guide (MCC-CG©) for family caregivers. Following translation into Hebrew, an expert panel of Israeli nurses edited the MCC tool for cultural relevance. The authors then conducted qualitative interviews with patients with breast cancer and their family caregivers to obtain feedback. Data were analysed using qualitative content analysis. FINDINGS: Following recommendations from Israeli experts in oncology and/or palliative care (n=3), the authors revised intervention content specific to the US healthcare system and culture. Patients' (n=13) and family caregivers' (n=10) reported MCC as attractive (70%, 80%), topically relevant (80%, 70%), and culturally appropriate, but felt that palliative care resources should be more Israel-specific. CONCLUSION: The MCC tool is acceptable to potential users, warranting further pilot-testing.


Assuntos
Neoplasias da Mama , Cuidados Paliativos , Cuidadores , Feminino , Humanos , Israel , Qualidade de Vida
10.
Oncol Nurs Forum ; 49(1): 46-57, 2022 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-34914676

RESUMO

OBJECTIVES: To characterize the needs and preferences for pain self-management support (SMS) among patients with cancer during the transition of cancer care from the hospital to the home setting. SAMPLE & SETTING: 38 participants with cancer pain at a research-intensive cancer center in New England. METHODS & VARIABLES: A descriptive, cross-sectional survey study was conducted to investigate relationships among preferred and received support, extent and management of transitional change, and pain outcomes. Pain intensity and interference were measured using the Brief Pain Inventory-Short Form, transitional change was measured using the Measurement of Transitions in Cancer Scale, and SMS was measured using dichotomous questions. RESULTS: About half of participants reported concordance between preferred and received cancer pain SMS in the hospital and at home. The extent of transitional change in cancer care was found to be a significant predictor of average pain intensity in the hospital and pain interference at home. Satisfaction with cancer pain SMS was a significant predictor of pain intensity at home. IMPLICATIONS FOR NURSING: The extent of change during care transitions should be considered when fulfilling patient needs and preferences for cancer pain SMS to optimize outcomes.


Assuntos
Dor do Câncer , Neoplasias , Autogestão , Humanos , Dor do Câncer/terapia , Estudos Transversais , Neoplasias/complicações , Neoplasias/terapia , Dor/etiologia
11.
Pain Manag Nurs ; 23(4): 486-493, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34794885

RESUMO

BACKGROUND: Cancer pain prevalence remains high, and variance in self-efficacy for managing pain may explain why some patients experience greater pain severity. AIM: This study explored perceptions of self-efficacy in relation to cancer pain severity and treatment related characteristics. METHOD: A descriptive cross-sectional survey was administered to 50 cancer outpatients. Data analysis involved descriptive and correlational statistical analyses. RESULTS: Self-efficacy to manage pain was significantly associated with time since diagnosis and ability to deal with frustration, and inversely associated with pain severity level. A large proportion of patients reported low satisfaction self-managing their pain. Most patients reported independently self-managing their cancer pain; however, satisfaction with pain management was low for a large proportion of patients. Time since cancer diagnosis and ability to deal with frustration due to cancer pain were positively associated with cancer pain self-efficacy, whereas pain self-efficacy had a significant inverse correlation with cancer pain severity. CONCLUSIONS: Enhancing self-efficacy to self-manage under-treated cancer pain is important with implications for improving pain outcomes and quality of life. Further investigation on unmet needs and preferences for cancer pain self-management support is warranted.


Assuntos
Dor do Câncer , Neoplasias , Autogestão , Dor do Câncer/terapia , Estudos Transversais , Humanos , Neoplasias/complicações , Neoplasias/terapia , Dor/etiologia , Manejo da Dor , Qualidade de Vida , Autoeficácia
12.
BMJ Open ; 11(5): e048863, 2021 05 25.
Artigo em Inglês | MEDLINE | ID: mdl-34035109

RESUMO

INTRODUCTION: Incarceration is associated with decreased cancer screening rates and a higher risk for hospitalisation and death from cancer after release from prison. However, there is a paucity of data on the relationship between incarceration and cancer outcomes and quality of care. In the Incarceration and Cancer-Related Outcomes Study, we aim to develop a nuanced understanding of how incarceration affects cancer incidence, mortality and treatment, and moderates the relationship between socioeconomic status, structural racism and cancer disparities. METHODS AND ANALYSIS: We will use a sequential explanatory mixed-methods study design. We will create the first comprehensive linkage of data from the Connecticut Department of Correction and the statewide Connecticut Tumour Registry. Using the linked dataset, we will examine differences in cancer incidence and stage at diagnosis between individuals currently incarcerated, formerly incarcerated and never incarcerated in Connecticut from 2005 to 2016. Among individuals with invasive cancer, we will assess relationships among incarceration, quality of cancer care and mortality, and will assess the degree to which incarceration status moderates relationships among race, socioeconomic status, quality of cancer care and cancer mortality. We will use multivariable logistic regression and Cox survival models with interaction terms as appropriate. These results will inform our conduct of in-depth interviews with individuals diagnosed with cancer during or shortly after incarceration regarding their experiences with cancer care in the correctional system and the immediate postrelease period. The results of this qualitative work will help contextualise the results of the data linkage. ETHICS AND DISSEMINATION: The Yale University Institutional Review Board (#2000022899) and the Connecticut Department of Public Health Human Investigations Committee approved this study. We will disseminate study findings through peer-reviewed publications and academic and community presentations. Access to the deidentified quantitative and qualitative datasets will be made available on review of the request.


Assuntos
Neoplasias , Prisioneiros , Connecticut/epidemiologia , Humanos , Incidência , Neoplasias/epidemiologia , Prisões
13.
Qual Health Res ; 31(9): 1609-1621, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33834931

RESUMO

Self-management of chronic disease and related symptoms provides a framework for understanding the contextual factors that influence self-management knowledge and skills that patients and families require to manage their condition on a day-to-day basis. The management of cancer pain is a significant issue for patients and families, and their experience can provide insight on cancer pain self-management support needs and preferences. A meta-synthesis of 20 qualitative research articles on self-management of cancer pain was conducted to gain a deeper understanding of the self-management support needs of patients with cancer pain. Noblit and Hare's meta-ethnographic model was used. The meta-synthesis resulted in increased understanding of the needs and preferences for self-management support of cancer pain and the role of the health care practitioner. Practical implications are presented.


Assuntos
Dor do Câncer , Neoplasias , Autogestão , Antropologia Cultural , Dor do Câncer/terapia , Humanos , Neoplasias/terapia , Pesquisa Qualitativa
14.
J Pediatr Gastroenterol Nutr ; 72(4): 558-562, 2021 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-33394888

RESUMO

BACKGROUND: Eosinophilic esophagitis is an increasingly common inflammatory disease of the esophagus. Diagnosis and management are based on the histological presence of eosinophils in the esophageal mucosa, often requiring multiple endoscopies with sedation. Unsedated transnasal endoscopy (TNE), an alternative method of assessing the mucosa without the risks of sedation, is now being performed in the pediatric population. This is the first qualitative study on pediatric patients' and parents' experiences with TNE. OBJECTIVE: The objective of the study was to describe pediatric patients' and parents' experiences of TNE with the goal of refining TNE protocols to improve the clinical experience. METHODS: We used a qualitative descriptive approach that included in-depth, semistructured interviews with patients and parents following completion of TNE. Interviews continued until we reached thematic saturation. We analyzed data using qualitative content analysis. RESULTS: A total of 21 interviews were completed. We identified 4 themes: Appeal of TNE; Expectations and Preparation for TNE; Tolerance of TNE; and Evaluation of TNE. Perceived positive aspects of TNE were no exposure to intravenous anesthesia; helpful and clear preparation for the procedure with a demonstration video and physician phone call; distraction during TNE with virtual reality goggles and a stress ball; parent able to accompany the patient; and TNE requiring less time than an esophagogastroduodenoscopy. Negative aspects included patient stress before TNE, patient dislike of nasal spray taste and sensation, and discomfort during the TNE procedure. CONCLUSION: The overall perception of TNE among our participants was positive. Study data will allow pediatric gastroenterologists the opportunity to improve both preparation for and comfort during TNE.


Assuntos
Esofagite Eosinofílica , Criança , Endoscopia , Endoscopia do Sistema Digestório , Esofagite Eosinofílica/diagnóstico , Humanos , Pais
15.
Patient ; 13(6): 683-697, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32508006

RESUMO

BACKGROUND: While clinical pathways have been widely adopted to decrease variation in cancer treatment patterns, they do not always incorporate patient and family caregiver perspectives. We identified shared patient and family caregiver considerations influencing treatment preferences/decision making to inform development of a shared decision pathway. METHODS: We conducted qualitative interviews with women who completed initial definitive treatment for stage I-III breast cancer and their family caregivers. As part of a broader interview, we asked participants what they considered when choosing a treatment option for themselves/their loved one. We coded transcribed interviews, analyzed patient and family caregiver datasets separately, and compared findings. Findings Patients' (n = 22) mean age was 55.7 years, whereas family caregivers' (n = 20) mean age was 59.5 years, with most (65%) being patients' spouses/partners. Considerations reported by both groups included cancer status, treatment issues, physical/psychosocial/family consequences, and provider/health care system issues. Data revealed three key tensions that arise during treatment decision making: (1) having enough information to set expectations but not so much as to be overwhelming; (2) balancing the highest likelihood of cure with potential physical/emotional/social/financial consequences of the chosen treatment; and (3) wanting to make data-driven decisions while having a personalized treatment plan. DISCUSSION: Patients and family caregivers identified several considerations of shared relevance reflecting different perspectives. Efforts to balance considerations can produce tensions that may contribute to decision regret if unaddressed. CONCLUSION: Clinical pathways can increase exposure to decision regret if treatment options are selected without consideration of patients' priorities. A shared decision pathway that incorporates patient-centeredness could facilitate satisfactory decision making.


A clinical pathway is a tool used by doctors and nurses to help them plan how they will take care of patients. Clinical pathways do not always include what is important to patients and their families. We spoke with patients with breast cancer and their family members. We wanted to learn what is important to them when they are making decisions about how the patient will be treated for cancer. They reported thinking about the kind of cancer the patient had and about pros and cons of different treatment choices. They also thought about how much is known about different treatment choices. Other patients' stories were important. Patients and family members wanted to know how a treatment would affect their bodies, feelings, normal roles in life, and families. They also thought about their relationship with their doctors and nurses and about how they would pay for their care. It was seen as hard to balance these things when making decisions. Patients and family members wanted to make decisions they would be happy with later. We will use this information to create a new clinical pathway. This tool will help patients with breast cancer, family members, doctors, and nurses work together to make the best decisions about the patient's cancer.


Assuntos
Neoplasias da Mama , Cuidadores , Procedimentos Clínicos , Tomada de Decisões , Família , Feminino , Humanos , Pessoa de Meia-Idade
16.
West J Nurs Res ; 41(10): 1407-1422, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31007160

RESUMO

Psychological distress is prevalent among cancer patients, who may be vulnerable to distress at times of transition, such as a change in symptom experience, employment, or goal of treatment. Independently, both psychological distress and transitions impair patients' quality of life, and together their adverse impact may be intensified. Self-management allows patients to engage in tasks that influence the disease experience and can include strategies to help mitigate distress associated with transitions. The purpose of this systematic review was to examine research on the relationship between self-management interventions and distress in adult cancer patients receiving active tumor-directed therapy. From a search of seven electronic databases, 5,156 articles were identified; however, nine studies met inclusion criteria. Our review suggested that self-management interventions may help address psychological distress in patients receiving cancer treatment but that the current evidence is not robust enough to support a definitive conclusion.


Assuntos
Neoplasias/terapia , Angústia Psicológica , Autogestão/métodos , Adulto , Humanos , Neoplasias/psicologia , Qualidade de Vida/psicologia , Autogestão/tendências
17.
Nurs Res ; 68(1): 57-64, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30247334

RESUMO

BACKGROUND: We created the Measurement of Transitions in Cancer Scale to assess patients' perceptions of the extent of change they experience with cancer-related transitions and how well they feel they are managing these transitions. For some transitions, we found that the more change that was reported, the worse management was reported; however, the benchmark by which patients assess how well they have managed may vary with the extent of change. OBJECTIVES: The aim of the study was to identify approaches to combine reports of extent and management of change. METHODS: Among women with breast cancer, we explored relationships of composite measures (arithmetic and geometric means, subtractive and proportional need for improvement) with other indicators of well-being (symptoms, anxiety, depression, uncertainty, self-efficacy, knowledge of care options, medical communication competence). We examined statistical significance using false rate discovery for multiple tests on correlations with clinical outcomes. RESULTS: Greater extent and less management were significantly associated with higher total symptoms, anxiety, depression, uncertainty, and less self-efficacy in Personal Transitions, but not in Care Transitions. The arithmetic and geometric means had weak correlations with clinical outcomes, whereas the subtractive and proportional need for improvement had significant correlations with most clinical outcomes both in Personal and Care Transitions. The combined proportional need for improvement in Personal Transitions was significantly associated with total symptoms, anxiety, depression, uncertainty, and self-efficacy. The Care Transitions score was also significantly associated with total symptoms, anxiety, uncertainty, and self-efficacy. DISCUSSION: These approaches can be applied to other aspects of self-management that require assessment of the extent and management of an experience. The four approaches yield different results. We recommend the need for improvement composites to capture correlations with the clinical outcomes.


Assuntos
Neoplasias da Mama/psicologia , Qualidade de Vida/psicologia , Autoeficácia , Adulto , Idoso , Ansiedade/etiologia , Ansiedade/psicologia , Neoplasias da Mama/classificação , Feminino , Humanos , Pessoa de Meia-Idade , Psicometria/instrumentação , Psicometria/métodos , Autogestão/métodos , Autogestão/psicologia , Incerteza
18.
Semin Oncol Nurs ; 34(3): 252-263, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-30143346

RESUMO

OBJECTIVE: To describe the integration of family caregivers into palliative oncology care using the Self- and Family Management Framework. DATA SOURCES: Peer-reviewed journal articles. CONCLUSION: The role of family caregivers in palliative oncology includes focusing on illness needs, activating resources, and living with cancer. Several factors may serve as facilitators of or barriers to these activities. A growing number of interventions support family caregivers' involvement in palliative oncology care. IMPLICATIONS FOR NURSING PRACTICE: Nurses should identify who the family caregiver is, confirm ability and willingness, discuss patients' and family caregivers' goals for cancer care, activate resources, and promote ongoing communication to support changing needs.


Assuntos
Cuidadores , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Neoplasias/enfermagem , Papel do Profissional de Enfermagem , Enfermagem Oncológica/organização & administração , Cuidados Paliativos/organização & administração , Humanos , Relações Enfermeiro-Paciente , Manejo da Dor/enfermagem , Qualidade da Assistência à Saúde
19.
Curr Opin Support Palliat Care ; 12(3): 299-307, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30036215

RESUMO

PURPOSE OF REVIEW: Despite increased survivorship and the subsequent need for chronic management of cancer, the association of self-management and palliative care is still emerging within cancer care. Routine and timely use of self-management strategies in the palliative setting can help reduce self-management burden and maximize quality of life. In this review, we consider the complementary relationship of self-management and palliative care and how they support living with cancer as a chronic illness. RECENT FINDINGS: Recent studies provide evidence of support among patients, family caregivers and healthcare professionals for integration of self-management interventions into palliative cancer care. As a guiding framework, components of the revised Self and Family Management Framework correspond to the provision of palliative care across the care trajectory, including the phases of curative care, palliative care, end-of-life care and bereavement. Additional work among self-management partners facing cancer and other life-limiting illnesses, that is patients, family caregivers and healthcare professionals, would be useful in developing interventions that incorporate self-management and palliative care to improve health outcomes. SUMMARY: There is an increasing acceptance of the complementarity of self-management and palliative care in cancer care. Their integration can support patients with cancer and their family caregivers across the care trajectory.


Assuntos
Neoplasias/terapia , Cuidados Paliativos/organização & administração , Qualidade de Vida , Assistência Terminal/organização & administração , Luto , Cuidadores , Família , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Educação de Pacientes como Assunto , Relações Profissional-Família , Autogestão , Apoio Social , Assistência Terminal/psicologia , Fatores de Tempo
20.
J Palliat Care ; 33(3): 143-148, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29790421

RESUMO

INTRODUCTION: Goals of care (GoC) conversations optimally begin early in the course of cancer care, yet most happen near the end of life. We sought to describe oncologist-reported facilitators of and barriers to GoC conversations with patients who have advanced cancer. METHODS AND MATERIALS: We conducted individual, semistructured qualitative interviews with oncologists from 4 academic, community, municipal, and rural hospitals in New York and Connecticut. Interview topics included approach to GoC conversations, facilitators, barriers, and organizational influences. We analyzed data using interpretive description. We collected demographic and practice information and surveyed oncologists on their communication skills training. We calculated descriptive statistics for quantitative data. RESULTS: Oncologists (n = 21) had a mean age of 46 years (range: 34-68), 67% were male, 71% were White, 24% were Asian, 10% were Hispanic, and 5% were Black. They reported an average of 20 years in practice (range: 8-42), and 62% had received training on having GoC conversations. Facilitators included patient's poor functional status, patient's high health literacy, family understanding and acceptance, oncologist's practice experience, and a supportive practice environment. Barriers included certain patient demographic and clinical characteristics, patient religion and culture, patient's denial, and lack of time. CONCLUSION: GoC conversations may be facilitated by enabling oncologists to conduct these conversations despite difficult circumstances and emotional reactions by activating patients and family via increased health literacy and by advancing palliative-informed practice environments.


Assuntos
Barreiras de Comunicação , Neoplasias/psicologia , Neoplasias/terapia , Oncologistas/psicologia , Planejamento de Assistência ao Paciente/organização & administração , Relações Médico-Paciente , Assistência Terminal/psicologia , Adulto , Idoso , Atitude do Pessoal de Saúde , Connecticut , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New York , Pesquisa Qualitativa
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