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1.
Qual Health Res ; 34(1-2): 72-85, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37844970

RESUMO

Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22-39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance.


Assuntos
Neoplasias , Humanos , Adulto Jovem , Adolescente , Adulto , Neoplasias/psicologia , Saúde Mental , Canadá
2.
Palliat Med ; 37(1): 88-107, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36352490

RESUMO

BACKGROUND: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences. AIM: This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses. DESIGN: Scoping review. This review was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/SPTD7). DATA SOURCES: Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design. RESULTS: We identified 51 studies published between 2002 and 2021. Most studies were published in the United States (n = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews (n = 33). Three main topics were identified: Physical symptom burden (n = 26, 51%), Psychological and social needs (n = 33, 65%), and end-of-life care (n = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location. CONCLUSION: The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Adolescente , Humanos , Adulto Jovem , Cuidados Paliativos/psicologia , Estudos Retrospectivos , Revisões Sistemáticas como Assunto , Estados Unidos
3.
Cancers (Basel) ; 13(4)2021 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-33673202

RESUMO

Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encourage early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to 39 years, who were referred to the Integrated AYA Palliative Care and Psychiatry Clinic (IAPCPC) at the Princess Margaret Cancer Centre between May 2017 and November 2019 (n = 69). Demographic data, symptom prevalence, change in symptom scores between baseline consultation and first follow-up, and intensity of end-of-life care were collected from the patients' medical charts, analyzed, and reported. Of the 69 patients, 59% were female, and sarcoma was the most common cancer. A majority of patients had at least one symptom scored as moderate to severe; tiredness, pain, and sleep problems were the highest scored symptoms. More than one-third used medical cannabis to manage their symptoms. Symptom scores improved in 61% after the first clinic visit. Out of the 69 patients, 50 (72.5%) had died by October 2020, with a median time between the initial clinic referral and death of 5 months (range 1-32). Three patients (6%) received chemotherapy, and eight (16%) were admitted to an intensive care unit during the last month of life. In conclusion, AYAs with advanced cancer have a high burden of palliative and psychosocial symptoms. Creating a specialized AYA palliative care clinic integrated with psychiatry showed promising results in improving symptom scores and end-of-life planning.

4.
JCO Oncol Pract ; 16(1): e100-e108, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31765276

RESUMO

PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.


Assuntos
Pessoal de Saúde/psicologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
5.
JCO Oncol Pract ; 16(12): e1451-e1461, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32903156

RESUMO

PURPOSE: Young adults (YAs; defined as 18-39 years of age) with advanced cancer are a group for whom standardized age-appropriate palliative care has not been established. The purpose of this study was to explore the YA experience and perceptions of palliative care in an outpatient interdisciplinary palliative care clinic for this population. PATIENTS AND METHODS: Using an interpretive descriptive design, semistructured interviews were conducted with 12 YAs with advanced cancer who were being seen jointly by a palliative care physician and psychiatrist in an ambulatory palliative care clinic. Interviews explored participants' understanding and experiences of receiving palliative care. Six family members were also interviewed to build on the YA experience. Data collection and analysis occurred concurrently, drawing on the constructivist grounded theory method to analyze the data. RESULTS: Participants described being referred to and seen in the interdisciplinary palliative care clinic as a conflicting and at times difficult experience because of the feeling of being categorized as palliative as YAs. Even so, there were key aspects associated with the specific palliative care approach that allowed YAs to cope with this new label, leading to a beneficial experience, specifically: provided YAs with time and space to explore the experience of having cancer at a younger age, created repeat opportunities to talk openly with people who "got it," and highlighted the importance of including family support in the care of YAs. CONCLUSION: YAs who were referred to the interdisciplinary palliative care clinic struggled with the category of palliative care but also found the care they received beneficial. Findings provide an approach to palliative care tailored to YAs with advanced cancer.


Assuntos
Neoplasias , Cuidados Paliativos , Adaptação Psicológica , Família , Humanos , Neoplasias/terapia , Pacientes Ambulatoriais , Adulto Jovem
6.
BMJ Open ; 8(11): e022778, 2019 02 22.
Artigo em Inglês | MEDLINE | ID: mdl-30798287

RESUMO

INTRODUCTION: Medical trainees and professionals do not perceive that they are adequately taught the skills to address issues of grief with their patients. Atypical grief responses can prolong suffering, interrupt normal activities and lead to increased morbidity and mortality. Grief training can help physicians cope with feelings about and responses to suffering, loss and death in a way that improves both physician and patient/family wellness. This scoping review will describe the current landscape of grief training worldwide in medical school and residency and in continuing professional development in the disciplines of paediatrics, family medicine and psychiatry. The ultimate goal is to help physicians support patients experiencing grief. METHODS AND ANALYSIS: The study design has been adapted from Arksey and O'Malley's review methodology. We will work with an information specialist who will run searches in six multidisciplinary databases. To supplement the search, we will scan the reference lists of included studies. Two levels of screening will take place: a title and abstract review for articles that fit predefined criteria and a full-text review of articles that meet those criteria. To be included in the review, articles must report on grief training for medical residents and professionals in the fields of paediatrics, family medicine and psychiatry. Two investigators will review each article and extract data. ETHICS AND DISSEMINATION: Research ethics approval is not required for this review. We plan to share the findings through national and international medical education conferences and to publish the results in a peer-reviewed academic journal. We have the support of several directors of medical education at our institution who are interested in the growing focus on humanism in medical education as a way of decreasing burnout among medical students, residents and faculty.


Assuntos
Pesar , Pessoal de Saúde/educação , Psiquiatria/educação , Projetos de Pesquisa , Competência Clínica , Educação , Humanos , Literatura de Revisão como Assunto
7.
PLoS One ; 14(11): e0224325, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31774815

RESUMO

INTRODUCTION: Medical education experts argue that grief support training for physicians would improve physician and patient and family wellness, and should therefore be mandatory. However, there is little evidence about the range of curricula interventions or the impact of grief training. The aim of this scoping review was to describe the current landscape of grief training worldwide in medical school, postgraduate residency and continuing professional development in the disciplines of pediatrics, family medicine and psychiatry. METHODS: Using Arksey and O'Malley's scoping review principles, MEDLINE, EMBASE, ERIC, PsychInfo and Web of Science were searched by a librarian. Two levels of screening took place: a title and abstract review for articles that fit a predefined criteria and a full-text review of articles that met those criteria. Three investigators reviewed the articles and extracted data for analysis. To supplement the search, we also scanned the reference lists of included studies for possible inclusion. RESULTS: Thirty-seven articles published between 1979 and 2019 were analyzed. Most articles described short voluntary grief training workshops. At all training levels, the majority of these workshops focused on transmitting knowledge about the ethical and legal dimensions of death, dying and bereavement in medicine. The grief trainings described were characterized by the use of diverse pedagogical tools, including lectures, debriefing sessions, reflective writing exercises and simulation/role-play. DISCUSSION: Grief training was associated with increased self-assessed knowledge and expertise; however, few of the studies analyzed the impact of grief training on physician and patient and family wellness. Our synthesis of the literature indicates key gaps exist, specifically regarding the limited emphasis on improving physicians' communication skills around death and dying and the limited use of interactive and self-reflexive learning tools. Most trainings also had an overly narrow focus on bereavement grief, rather than a more broadly defined definition of loss.


Assuntos
Competência Clínica , Educação Médica/métodos , Pesar , Relações Médico-Paciente , Médicos/psicologia , Comunicação , Currículo , Humanos , Aprendizagem
9.
Child Adolesc Psychiatr Clin N Am ; 27(1): 109-124, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29157497

RESUMO

Grief is ubiquitous in the experience of children and adolescents with illness but not always recognized or named, and as a result grief is not always treated effectively by child/adolescent psychiatrists or pediatricians. Grief can be misinterpreted or treated as stress, anxiety, depression, adolescent moodiness, or behavioral concerns. Pediatricians and child/adolescent psychiatrists are often insufficiently educated on the topic of grief.


Assuntos
Psiquiatria do Adolescente , Psiquiatria Infantil , Morte , Pesar , Pediatria , Adolescente , Humanos , Fatores de Tempo
10.
Rev. chil. neuro-psiquiatr ; 56(3): 169-176, 2018.
Artigo em Espanhol | LILACS | ID: biblio-978084

RESUMO

Resumen Introducción: Cada año aumenta el número de personas que padece algún tipo de cáncer. Los corticoides son ampliamente utilizados en el tratamiento de los pacientes con cáncer y su uso no está exento de efectos adversos, muchas veces muy invalidantes. Objetivo: Presentar un caso clínico de un brote hipomaníaco en una paciente con cáncer de ovario usuaria de corticoides y realizar una revisión de la literatura del tema. Caso clínico: Paciente, portadora de un cáncer de ovario avanzado, tratado con cirugía y quimioterapia, debuta con episodios de vómitos que son manejados con dexametasona. Durante el tratamiento presenta insomnio, verborrea e ideas de grandiosidad, diagnosticándose un brote hipomaniaco secundario al tratamiento esteroidal. Discusión: En el caso de los pacientes oncológicos, e independientemente del uso de corticoides, aproximadamente el 50% de ellos presentará algún tipo de sintomatologia psiquiátrica, ahora bien, si a esto agregamos el uso de corticoides la incidencia puede aumentar hasta un 65% - 75%. La hipomanía da cuenta prácticamente del 50% de los trastornos psiquiátricos inducidos por corticoides. Con dosis menores de 40 mg/día sólo el 2% de los pacientes se verá afectado por este tipo de trastornos, mientras que con dosis entre 40 a 80 mg/día esta incidencia aumenta hasta un 5%. Conclusión: Los corticoides son ampliamente utilizados en pacientes oncológicos, sin embargo, su uso puede provocar trastornos psiquiátricos. Es importante dar a conocer más al equipo sanitario referente a la asociación de corticoides y cuadros psiquiátricos para su rápida detección y manejo clínico.


Introduction: Every year the number of people affecting by cancer increase. Corticosteroids are widely used in the treatment of patients with cancer and their use is not without adverse effects, often very disabling. Objective: Present a clinical case of hypomanic outbreak in a patient with ovarian cancer using corticosteroids and to carry out a review of the literature on the subject. Clinical case: Patient with an advanced ovarian cancer, treated with surgery and chemotherapy, debuts with episodes of vomiting that are managed with dexamethasone. During the treatment he presented insomnia, verbiage and grandiosity, diagnosing a hypomanic outbreak secondary to steroidal treatment. Discussion: In cancer patients, and independently of the use of corticosteroids, approximately 50% of them will present some type psychiatric disorder. With corticosteroids the incidence can increase up to 65%-75%. Hypomania accounts for almost 50% of psychiatric disorders induced by corticosteroids. With doses lower than 40 mg/day only 2% of patients will be affected by this type of disorders, while with doses between 40 to 80 mg/day this incidence increases up to 5%. Conclusion: Corticosteroids are widely used in cancer patients, however their use can cause psychiatric disorders. It is important to make the healthcare team more aware of the association of corticosteroids and psychiatric symptoms for rapid detection and clinical management.


Assuntos
Humanos , Feminino , Adulto , Neoplasias Ovarianas , Terapêutica , Corticosteroides , Mania , Oncologia , Transtornos Mentais
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