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Репродуктивная автономия женщин, живущих с множественной миеломой, участвующих в программе профилактики беременности.

Множественная миелома — неизлечимый гематологический рак, который в первую очередь затрагивает пожилых людей. Женщины, имеющие фертильный потенциал, составляют небольшую, но уникальную долю населения, страдающего от многочисленных миелом. Иммуноводные агенты (талидомид, линалидомид и помалидомид) являются высокоэффективными средствами лечения для улучшения длительных периодов глубокой ремиссии и долгосрочного выживания в Множестве миеломы, которые осуществляются в рамках программ контролируемого распределения, требующих наблюдения за беременностью для женщин с потенциалом деторождения, с тем ч

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… This represented a source of resentment and frustration for many women in this study. … And that's frustrating too, is I don't want to have to be the one trying to push to make it happen. …

Social relationship challenges perceived by cancer patients and survivors: a qualitative meta-synthesis.

BackgroundA cancer diagnosis can significantly disrupt patients' social lives, leading to strained relationships and increased social isolation. Many encounter uneasy interactions or feel judged by others, amplifying loneliness and a sense of exclusion. While existing research has predominantly focused on clinical outcomes, the social relationship challenges faced by cancer patients have not been fully explored. Consequently, this study aims to synthesize qualitative studies that examine the social relationship experiences of cancer patients and survivors, offering a deeper insight into this i

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… Excessive expressions of pity or emotional responses act as significant stressors, eliciting frustration and discomfort. … For example, Merluzzi et al. highlight the detrimental impact of mismatched support, where assistance either does not align with or is unwanted by the patient, leading to frustration and emotional strain [ 92 ]. …

Living with pain-a systematic review on patients' subjective experiences.

BACKGROUND: Understanding the subjective experiences of patients living with chronic, acute, and cancer pain can significantly enhance the selection of treatment approaches, care, and support, ultimately improving their quality of life. This qualitative systematic review aimed to analyze if the patients' subjective experiences of living with pain differ between acute, chronic, and cancer pain states. METHODS: After registration in PROSPERO (CRD42023491745), an electronic search was conducted in the databases Medline (Ovid), Embase (embase.com), Cochrane (Wiley), Web of Science (Clarivate Anal

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… And me being really frustrated and saying ‘‘How is that good news?’’ and they were you know ‘‘You should be really pleased. There’s nothing dangerously wrong with you.’’ But I was just desperate to know what was going on because it was having such an impact on my life [ 42 ]. … Many patients with chronic pain feel misunderstood by healthcare providers, leading to frustration and isolation [ 36 , 42 ]. Many individuals with chronic pain, including those experiencing pain after cancer treatment, struggle to find effective care or solutions [ 55 ]. …

Characterizing the Patient Journey in Multiple Myeloma: Qualitative Review.

BACKGROUND: The patient experience of multiple myeloma (MM) is multifaceted and varies substantially between individuals. Current published information on the patient perspective and treatment of MM is limited, making it difficult to gain insights into patient needs regarding the condition. OBJECTIVE: In this review, a combined research method approach (ie, the review of published literature and social media posts) was undertaken to provide insight into patients' perspectives on the burden and treatment of MM, the impact of the COVID-19 pandemic, and the impact of MM on caregivers of patients

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… [Female patient, aged 57 years] “Now I’ve had this window where I haven’t had treatment, I realize how much different I feel by it not weighing you down all the time, and frustrating you that you can’t do what you want to do.” … Practicalities of managing a family member with myeloma and the associated burden for caregivers Caregivers experience fear, uncertainty, and frustration surrounding the prognosis of their relative’s myeloma, which was associated with a substantial emotional burden. …

The unseen symptom: A longitudinal qualitative interview study exploring mobility loss in people with advanced cancer.

BACKGROUND: Mobility loss is a common symptom in people with advanced cancer and is associated with reduced function and quality of life. While its physical consequences are well documented, less is known about how individuals and their families experience and adapt to these changes over time. AIM: To explore how individuals with advanced cancer and their caregivers experience and respond to mobility loss. DESIGN: A qualitative longitudinal study using Interpretative Phenomenological Analysis. Participants completed two semi-structured interviews, with follow-ups prompted by changes in mobil

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… Alongside eroding participation, participants described guilt and frustration at relying on others, while caregivers spoke of renegotiating responsibilities within relationships. | “ I’m so dependent on my kids now. … This enforced dependency was described with feelings of frustration and guilt, with participants acknowledging the strain placed on family. …

Voices of Survivorship: The Unmet Needs of Italian Cancer Survivors. A Qualitative Study.

BackgroundThe increasing number of cancer survivors (CSs) globally highlights the critical need for healthcare systems to address their unmet needs. These needs span physical, psychosocial, spiritual, informational, and practical dimensions and, if unaddressed, can impact quality of life and healthcare satisfaction.AimsThis study aimed to identify and understand the unmet needs of CSs in Italy to guide the development of patient-centered survivorship care services.MethodsA cross-sectional qualitative study was conducted between April 2023 and January 2024 at the Comprehensive Cancer Centre of

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… These themes have been linked to a sense of personal frustration [ 32 ] and to a reduction in the effectiveness of the treatment [ 33 ]. Frailty, which colored many of the reported unmet needs, impacts CSs' survival, long‐term function, and quality of life [ 34 ]. … While ideal models of survivorship care remain aspirational, the frustrations expressed by participants, such as feelings of being disregarded, overwhelmed by bureaucracy, or insufficiently informed, highlight addressable gaps within the current system. …

Interventions during pregnancy to prevent preterm birth: an overview of Cochrane systematic reviews.

BACKGROUND: Preterm birth (PTB) is a major factor contributing to global rates of neonatal death and to longer-term health problems for surviving infants. Both the World Health Organization and the United Nations consider prevention of PTB as central to improving health care for pregnant women and newborn babies. Current preventative clinical strategies show varied efficacy in different populations of pregnant women, frustrating women and health providers alike, while researchers call for better understanding of the underlying mechanisms that lead to PTB. OBJECTIVES: We aimed to summarise all

Optimizing Patient Education of Oncology Medications: A Patient Perspective.

The medication information needs of patients with cancer have been primarily studied using quantitative methods and little qualitative research on this topic exists. The purpose of this study was to explore patients' perspectives of optimal oncology medication education provided to patients at the Nova Scotia Health Authority (NSHA). Adult (≥ 18 years) outpatients in medical, gynecological and hematology oncology at NSHA were invited to participate in focus groups, which were audio-recorded, transcribed and analyzed thematically. Three focus groups, including 21 outpatients, were conducted. Fo

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… However, frustration was expressed when patients discussed the long wait times to receive their chemotherapy. Financial Implications Patients identified cost of medications as a major concern. … Although patients acknowledged that “a lot of money is invested in us” (participant A2), they also expressed frustration when discussing that “if the drug is given intravenously here then it’s covered, but if you’re taking a pill it’s not covered” (participant A3). …

Определение концепций физической активности, которые имеют клиническое значение для пациентов и лиц, обеспечивающих уход: систематический обзор качественных исследований.

Физическая активность (ПА) необходима для общего здоровья. Неоптимальная ПА связана с снижением качества жизни (QOL) и преждевременной смертью. При проведении клинических исследований и разработке терапевтических методов определение тех аспектов ПО, которые имеют значение для пациентов и лиц, обеспечивающих уход, имеет важнейшее значение для разработки специальных мероприятий, выявления индивидуальных контекстуальных факторов и повышения степени удовлетворенности пациентов и их участия в обеспечении их собственного благополучия. По мере быстрого развития цифровых технологий здравоохранения (ДТ

Целостное понимание заботливых пациентов с множественной миеломой: бремя и возможности для вмешательства - обзор.

Множественная миелома (ММ) считается хроническим раком крови; пациенты миэломы часто испытывают усталость и боль в костях. Они также могут иметь ограниченную мобильность, что делает их зависимыми от лиц, обеспечивающих уход, для выполнения повседневных задач. Пациенты, как представляется, в меньшей степени участвуют в управлении своими условиями, полагаясь на неоплачиваемых воспитателей за эмоциональную и практическую помощь, и зачастую игнорируя свои собственные потребности. Аркси и О'Мэлли использовали для этого обзора. В рамках этого аналитического обзора рассматривается вопрос о бремени ли

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… . | The most common effects on family members and partners that were described included anxiety, sadness, disruption of family activities, frustration and sleep disturbance. … Their levels of stress, anxiety, depression and frustration were extremely elevated. The disease’s unpredictable nature and intensive therapies caused disruptions in work, sleep and relationships. …

Barriers and facilitators to the implementation of lay health worker programmes to improve access to maternal and child health: qualitative evidence synthesis.

BACKGROUND: Lay health workers (LHWs) perform functions related to healthcare delivery, receive some level of training, but have no formal professional or paraprofessional certificate or tertiary education degree. They provide care for a range of issues, including maternal and child health. For LHW programmes to be effective, we need a better understanding of the factors that influence their success and sustainability. This review addresses these issues through a synthesis of qualitative evidence and was carried out alongside the Cochrane review of the effectiveness of LHWs for maternal and ch

Повторяется интерференция когнитивных-моторных помех при множественном склерозе: двухзадачная парадигма с использованием изношенных инерционных датчиков и тест с сериальным добавлением Paced Audity Serial.

ВВЕДЕНИЕ: Множественный склероз (MS) представляет собой хроническое аутоиммунное заболевание, затрагивающее центральную нервную систему и приводящее к нарушению моторных и когнитивных функций. Эти нарушения становятся особенно очевидными при выполнении двойной задачи, такой, как ходьба во время когнитивной деятельности. Предыдущие исследования выявили изменения в параметрах, характерных для похода, в ходе выполнения двух задач, однако когнитивный компонент по-прежнему недостаточно изучен в НР. Цель этого исследования состоит в том, чтобы расширить ранее сделанные выводы путем использования изн

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… Additionally, the PASAT is subjectively perceived as a challenging test by PwMS, which may lead to frustration, particularly in those with more impaired cognitive abilities ( 28 , 42 , 59–61 ). Accordingly, some studies advise against its continued use in neuropsychological testing ( 62 ). … However, for PwMS with severe cognitive impairment (MS_LCP), the demanding nature of the test could prove overwhelming, potentially leading to increased frustration and discomfort for patients compared to other, less cognitively demanding tasks under dual-task conditions. …

Psychological care of caregivers, nurses and physicians: a study of a new approach.

There is much evidence demonstrating that psychosocial interventions in caregivers and oncological staff produce an improvement in their patients' quality of life. The aim of this explorative study was to evaluate the effect of a new approach in promoting more functional ways to face stressful situations in the constellation of people around patients: caregivers, physicians and nurses. Thirty-four subjects were divided into three groups: 10 caregivers, 11 physicians, and 13 nurses. A "Balint Group" method modified according to a mindfulness technique was used as the intervention. Three assessm

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… Other factors can contribute to the development of a burnout: excessive workload, a sense of impotence, frustration, limited autonomy, and a perception that one's own work is meaningless. … The development of more adaptive strategies can help caregivers to accept their new stressful condition, and consequently provide better assistance for the people they are caring for, and can help hematologists and nurses foster better ways to face frustration and impotence, in order to prevent burnout …

Understanding the Experience of Cancer Pain From the Perspective of Patients and Family Caregivers to Inform Design of an In-Home Smart Health System: Multimethod Approach.

BackgroundInadequately managed pain is a serious problem for patients with cancer and those who care for them. Smart health systems can help with remote symptom monitoring and management, but they must be designed with meaningful end-user input.ObjectiveThis study aims to understand the experience of managing cancer pain at home from the perspective of both patients and family caregivers to inform design of the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) smart health system.MethodsThis was a descriptive pilot study using a multimethod approach. Dyads of patients w

Blood transfusion in haematology: A qualitative exploration of patients' and healthcare professionals' perceptions.

ObjectivesRepeated blood transfusions are indicated for the management of patients with cancer or blood disorders. Patients' perceptions about transfusions may be associated with decision-making and coping, which has been under-explored in the haematology context. This study therefore aimed to explore haematology transfusion patients' and HCPs' perceptions of blood transfusion, drawing on theory and previously identified themes of transfusion perceptions.DesignSemi-structured interview study with 14 adult blood transfusion patients and 14 HCPs (consultants, registrars, nurses) at two UK haemat

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… Negative emotions Some patients reported worries, fears and frustrations with receiving transfusions or found them hard to initially deal with. Some patients disliked being cannulated or the time length of the transfusion. … Silent Negative emotions | P | Perception that doctors dislike prescribing transfusions | Partial agreement HCP | Concern about downsides of transfusions for patients Negative emotions | HCP | Patients’ unexpressed potential negative emotions | Silent Negative emotions | HCP | Practice concerns and frustrations …

По сравнению с BCMA-Targeted Biotices и High-Dose Melphalan.

Дисгейя является побочным эффектом anti-GPRC5DxCD3 Как известно, другие виды лечения миэломы, такие, как высокодозырный мелфалан (MEL) с аутологической трансплантацией стволовых клеток (ASCT), также изменяют вкусовое восприятие пациентов с множественной миеломой (MM). В ходе этого исследования изучаются спектр, распространенность и острота дисгейских заболеваний у пациентов, получающих TAL и MEL, и сопоставляются полученные результаты с биоритами антиBCMA в качестве средства контроля за лечением клеток Т. МЕТОДЫ: АНАЛИЗ И ОФИЦИАЛЬНЫЕ ДЕЙСТВИЯ 87 Пациенты MM разделились на three группы обработк

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… The onset of taste disturbances resulted in a profound loss of this source of pleasure for 61.5% of patients, leading to frustration when familiar taste perceptions during meals remained unfulfilled. … Patients vividly expressed the emotional toll of these taste disturbances, including feelings of frustration and disappointment, highlighting the profound impact on their daily lives and enjoyment of food. …

Comparison of health locus of control in oncological and non-oncological patients.

Aim of the studyThe aim of the study was to investigate whether there are differences in the various dimensions of the health locus of control between oncological and non-oncological patients and to determine whether there is a relationship between the level of health locus of control and the type, duration of disease and gender.Material and methodsThe study was conducted at the Department of Hematology and the 1st Department of Cardiology of the University Hospital in Krakow. 204 patients were enrolled. Our own questionnaire developed for this purpose and the Multidimensional Health Locus of

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… Wortman and Dunkel-Schetter suggest that chronically ill patients who have an internal LOC may feel frustrated and helpless due to the inability to make a significant change in their health. … On the other hand, people with an external LOC may be in a better mental condition because they do not try to control their environment and therefore do not experience a high level of frustration [ 7 ]. …

Validation of the Thai version of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family members of patients with cancer.

BackgroundCancer not only impairs a patient's physical and psychosocial functional behaviour, but also contributes to negative impact on family members' health related quality of life. Currently, there is an absence of a relevant tool in Thai with which to measure such impact. The aim of this study was to translate and validate the Family Reported Outcome Measure (FROM-16) in Thai cancer patients' family members.MethodsThai version of FROM-16 was generated by interactive forward-backward translation process following standard guidelines. This was tested for psychometric properties including re

Promoting patient-centered care in CAR-T therapy for hematologic malignancy: a qualitative meta-synthesis.

BackgroundCAR-T therapy has emerged as a potentially effective treatment for individuals diagnosed with hematologic malignancies. Understanding patients' unique experiences with this therapeutic approach is essential. This knowledge will enable the development of tailored nursing interventions that align with the increasing importance of patient-centered care.ObjectiveTo examine and synthesize qualitative data on patients and their family caregivers' experiences during the treatment journey.DesignWe conducted a systematic review and qualitative meta-synthesis. Eligible studies contained adult

Holding space: a participatory exploration of first nations health professionals' experiences supporting cancer patients through hospital-based treatment.

BackgroundColonial mechanisms continue to inflict trauma on Aboriginal and Torres Strait Islander peoples, the First Nations peoples of Australia. Consequence of this trauma is a disproportionately high rate of cancer mortality experienced among First Nations peoples and inequities in access to cancer services that are culturally responsive. There is a critical need for cancer care that supports First Nations peoples' holistic health and wellbeing. Engagement with First Nations health staff is a known element of culturally safe healthcare, however the experiences of and challenges facing First