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BACKGROUND: This study aimed to clarify the situation and evaluate the communication on anticancer treatment discontinuation from the viewpoint of a bereaved family, in reference to the concept of nudges. METHODS: A multi-center questionnaire survey was conducted involving 350 bereaved families of patients with cancer admitted to palliative care units in Japan. RESULTS: The following explanations were rated as essential or very useful: (i) treatment would be a physical burden to the patient (42.9%), (ii) providing anticancer treatment was impossible (40.5%), (iii) specific disadvantages of receiving treatment (40.5%), (iv) not receiving treatment would be better for the patient (39.9%) and (v) specific advantages of not receiving treatment (39.6%). The factors associated with a high need for improvement of the physician's explanation included lack of explanation on specific advantages of not receiving treatment (ß = 0.228, P = 0.001), and lack of explanation of 'If the patient's condition improves, you may consider receiving the treatment again at that time.' (ß = 0.189, P = 0.008). CONCLUSIONS: Explaining the disadvantages of receiving treatment and the advantages of not receiving treatment, and presenting treatment discontinuation as the default option were effective in helping patients' families in making the decision to discontinue treatment. In particular, explanation regarding specific advantages of not receiving treatment was considered useful, as they caused a lower need for improvement of the physicians' explanation.
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Luto , Comunicação , Família , Neoplasias , Humanos , Masculino , Feminino , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Neoplasias/terapia , Família/psicologia , Idoso , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Suspensão de Tratamento , Cuidados Paliativos/psicologia , Japão , Relações Médico-Paciente , Idoso de 80 Anos ou mais , Tomada de DecisõesRESUMO
AIMS: To investigate the level of adoption of evidence-based family engagement and support during end-of-life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. DESIGN: Contextual analysis using an online cross-sectional survey. METHODS: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non-parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational- and physiotherapists and psychosocial professionals (chaplains, onco-psychologists and social workers). The STROBE checklist for cross-sectional studies was followed. RESULTS: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end-of-life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end-of-life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self-perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end-of-life and bereavement care than others, particularly during the end-of-life phase. CONCLUSION: Evidence-based family engagement and support were better adopted during end-of-life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. PROTOCOL REGISTRATION: https://osf.io/j4kfh. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. IMPACT: The findings show that evidence-based family engagement and support practices during end-of-life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence-based end-of-life and bereavement support. REPORTING METHOD: The STROBE checklist for reports of cross-sectional studies was followed (von Elm et al., 2007).
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Luto , Neoplasias , Assistência Terminal , Humanos , Estudos Transversais , Assistência Terminal/psicologia , Feminino , Masculino , Adulto , Neoplasias/enfermagem , Neoplasias/psicologia , Neoplasias/terapia , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Família/psicologia , Inquéritos e Questionários , Suíça , Atitude do Pessoal de Saúde , Prática Clínica Baseada em EvidênciasRESUMO
OBJECTIVES: Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training. METHODS: We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis. RESULTS: We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists. SIGNIFICANCE OF RESULTS: Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.
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Comunicação , Pessoal de Saúde , Neoplasias , Pesquisa Qualitativa , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Feminino , Masculino , Adulto , Austrália , Relações Profissional-Família , Pessoa de Meia-Idade , Adolescente , CriançaRESUMO
OBJECTIVES: Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called "informal caregivers." The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed. METHODS: An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals. RESULTS: Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness. SIGNIFICANCE OF RESULTS: This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between "roles." It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one's illness, given how important it is to address the family's needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people's needs.
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Cuidadores , Pessoal de Saúde , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Masculino , Feminino , Pessoal de Saúde/psicologia , Portugal , Cuidados Paliativos/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Pessoa de Meia-Idade , Adulto , Idoso , Apoio Social , Neoplasias/psicologia , Neoplasias/complicações , Atitude do Pessoal de SaúdeRESUMO
OBJECTIVES: This systematic review aimed to identify oncology nurses' experiences of using health information systems (HIS) in the delivery of cancer care. DATA SOURCES: The electronic databases searched included CINAHL, MEDLINE (EBSCO host), SCOPUS, Web of Science Core Collection, Google Scholar, OVID, and ProQuest Central (using advanced search strategy) and hand searching of reference lists of the included articles and relevant systematic reviews. Studies published in English language were examined. CONCLUSION: Twenty-six studies were included. Three themes emerged: (1) the transparency and application of the nursing process within HIS, (2) HIS enhancing and facilitating communication between nurses and patients, and (3) the impact of HIS on the elements of person-centered care. Nurses' experiences with HIS were overall positive. However, digital systems do not fully capture all elements of the nursing processes; this was confirmed in this review, through the nurses' lens. Most studies used HIS for symptom reporting and monitoring within non-inpatient settings and largely biomedical and lack insight into the person-centeredness and overall holistic care. IMPLICATIONS FOR NURSING PRACTICE: There are evidently varied views of HIS adoption across the globe. HIS can improve health-related quality of life and symptom burden, including self-reporting of symptoms among patients. However, there is a need for ongoing high-quality research, and clearer reporting than is evident in the current 26 studies, to fully understand the impact of HIS within the nursing processes and patient outcomes across all specialty cancer fields.
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Neoplasias , Enfermagem Oncológica , Humanos , Enfermagem Oncológica/métodos , Neoplasias/enfermagem , Neoplasias/psicologia , Sistemas de Informação em Saúde , Atitude do Pessoal de Saúde , Assistência Centrada no Paciente , Masculino , FemininoRESUMO
Purpose: This qualitative study aimed to explore the perspectives of adolescents and young adults (AYA) on a planned nurse-patient dyadic storytelling intervention. Background: Cancer is a highly distressful event for AYA. AYA with cancer experience multidimensional suffering while dealing with their developmental transition from adolescence to young adulthood. Their unique needs require appropriate, well-tailored psychosocial support. Nurses can provide such support through storytelling approaches. METHOD: AYA cancer survivors participated in cross-sectional qualitative interviews to provide feedback on the nurse-patient storytelling intervention model. ANALYSIS: Qualitative content analysis was used to interpret and categorize the data. FINDINGS: Barriers and facilitators of the intervention emerged. Themes related to barriers included (a) the disadvantages of an online program, (b) the limitations of the in-person program, (c) interacting with nurses, (d) sharing personal stories with others, and (e) the timing of the program. Themes regarding facilitators included (a) benefits to AYA with cancer, (b) benefits to nurses, (c) benefits of online/in-person programs, and (d) willingness to participate. Conclusions: AYA with cancer may benefit from the nurse-patient dyadic storytelling intervention. Developing innovative methods to optimize and customize interventions based on preferences is essential. Future research should involve nurse feedback and tailored approaches for AYA with cancer.
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Sobreviventes de Câncer , Neoplasias , Humanos , Adolescente , Adulto Jovem , Adulto , Sobreviventes de Câncer/psicologia , Estudos Transversais , Neoplasias/psicologia , Relações Enfermeiro-Paciente , ComunicaçãoRESUMO
Purpose: To explore Allied Health Professionals' (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15-39) with a poor cancer prognosis. Methods: We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) training program from May to August 2021. Moderator-facilitated discussions were guided by topics related to experiences around discussions and utilization of PAR among AYA with a poor cancer prognosis. Thematic analysis was conducted using the constant comparison method. Results: Forty-three AHPs participated in one of seven FGs. Three themes emerged: (1) PAR as palliative care: preserving patient's legacy for their partner, siblings, and parents; (2) ethical and legal considerations for balancing patient's time-sensitive needs; and (3) barriers AHPs encounter navigating complex dynamics of care in this population. Subthemes included an emphasis on patient autonomy, a multidisciplinary approach to counseling, early initiation of fertility discussions continuing over time, documenting reproductive desires, and concerns for family and offspring after patient death. Conclusions: AHPs desired timely conversations on reproductive legacy and family planning. In the absence of institutional policies, training, and resources, AHPs emphasized feeling ill-equipped to navigate the complex dynamics between patients, families, and colleagues. The development of transparent institutional policies, implementation of multidisciplinary care teams, and oversight with ethics committees may improve the provision of reproductive health care and/or end-of-life care for AYA with a poor cancer prognosis and their families.
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Preservação da Fertilidade , Neoplasias , Concepção Póstuma , Humanos , Adolescente , Adulto Jovem , Preservação da Fertilidade/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Pessoal Técnico de Saúde , PrognósticoRESUMO
BACKGROUND: Electronic Patient-reported outcome measures (ePROMs) are increasingly used in radiotherapy departments. However, the impact of ePROM integration on patients' perceptions of healthcare providers, particularly in terms of empathy and professionalism, remains unclear. Thus, this study aims to assess the patients' views on healthcare professionals during ePROM-based consultations. METHODS: In this randomized trial, radiotherapy patients were enrolled and asked to evaluate video vignettes of consultations between a radiation oncologist and a patient. Two scenarios were shown in random order, one vignette portrayed a paper-chart-based clinic visit, and the other a consultation in which ePROMs were implemented. Established questionnaires such as Physician Compassion Questionnaire (PCQ), Jefferson Patient Perception of Physician Empathy (JPP), Physician Professionalism Questionnaire (PPQ) and Global Consultation Rating Scale (GCRS) were used to rate the healthcare professional. The primary endpoint was physician compassion. RESULTS: Between May and August 2022, 152 patients, predominantly with malignancies of the breast, prostate, and brain participated. Patients rated the physician in ePROM-based consultations with higher mean scores for physician compassion compared to paper chart-based ones (36.4 vs. 34.2, p = 0.029). No negative impact of ePROMs was observed in terms of professionalism, global rating or physician empathy. Despite a shorter duration of the visit and reduced eye contact, 63 % of patients ultimately favored ePROM-based consultations. CONCLUSION: The ePREFERENCE trial shows that the implementation of ePROMs in clinic visits during radiotherapy treatment positively impacts the patients' perception of the physician's compassion. ePROMs can therefore not only be considered a useful tool to improve workflows but are also broadly accepted by patients.
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Empatia , Medidas de Resultados Relatados pelo Paciente , Relações Médico-Paciente , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Neoplasias/radioterapia , Neoplasias/psicologia , AdultoRESUMO
OBJECTIVES: Being met with empathy increases information sharing, treatment coherence, and helps patients to recover faster. However, we do not know how the content of the conversation about disease progression, new treatments, or other issues concerning serious illness affects patients' perceptions of the physician's empathy, and thus, the quality of the conversation. This study aimed to test the hypothesis that patients will rate their physician lower following a "bad news" consultation using the consultation and relational empathy (CARE) measure. METHODS: A total of 186 outpatients from the Department of Oncology were recruited for this study. After meeting with a patient, the physician filled out a form, placing the patient in either the "bad news" group, or the "neutral/good news" group along with information about the patient and the consultation. The patient was given the CARE measure after the visit. RESULTS: The patients who had received bad news rated their physicians a significantly lower score on the CARE measure, even though the effect size was small, than those who had neutral/good news. On average, bad news consultations were 11 min longer. CONCLUSIONS: Physicians need to be aware of the patients' need to be known and understood, in addition to having skills to attend to emotional cues and concerns, since the current study's finding could be a sign either of the content being projected onto the physician or that the physician is focused on the message rather than on the patient.
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Empatia , Relações Médico-Paciente , Encaminhamento e Consulta , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Neoplasias/psicologia , Neoplasias/terapia , Revelação da Verdade , Oncologia , Médicos/psicologia , Comunicação , Percepção , Satisfação do PacienteRESUMO
PURPOSE: Many children and adolescents support relatives with cancer. However, literature about young carers (YCs) shows a lack of awareness among professionals, especially in oncology. This quantitative study aims to explore the level of knowledge and perceptions of healthcare professionals working with cancer patients about the situations and characteristics of YCs. METHODS: 395 professionals participated in an online survey. Professionals reported sociodemographic and professional information and answered several questions evaluating their perceptions about YCs, such as the types of support provided and the consequences of being a YC. Descriptive analysis and group comparisons (Chi-square, Mann-Whitney U, and Kruskal-Wallis tests) by sex, occupation, and patients treated (adult and/or pediatric) are performed on the data collected. RESULTS: Overall, per the literature on YCs, professionals provide an adequate description of what a YC can be, even though one in two professionals have never heard the term. Several differences are observed: Men mention fewer types of support that YCs can provide, while women report more negative consequences of being a YC; psychologists and social workers report fewer positive impacts for these young people than the other professionals; professionals who work with pediatric patients mention fewer negative consequences than those who work with adults. CONCLUSION: Oncology healthcare professionals have sufficient awareness of YCs; however, several professionals struggle to fully understand the situation of YCs. These findings underline the need for awareness programs in oncology to improve health professionals' understanding of YCs and enhance their identification and support.