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Euthanasia as a safeguard for living: Anticipation and incurable cancer in a Colombian context.

This article builds on years of ethnographic conversations I sustained with my father, 89, who lives in Colombia. Soon after getting diagnosed with an incurable Multiple Myeloma-a cancer known for unleashing prolonged and painful agonies-he withdrew from oncology treatments and secured access to euthanasia (assisted-dying) on his own, bypassing medico-insurance guidelines created to regulate this medical practice and prevent abuses. Eight years after withdrawing treatments, my dad is still alive. His case shines a light on how securing access to euthanasia may have had unintended therapeutic e

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… These experiences of waiting, frustration, and exhaustion are typical for most Colombians when navigating the national health care system. … Four months of bi‐weekly iv infusions, burnt skin, and nausea had left him exhausted and frustrated. On top of that, he was immunosuppressed; any ordinary infection could easily kill him. …

Experiences of Cancer-Related Cognitive Impairment Across Cancer Types: Qualitative Systematic Review.

BackgroundCancer-related cognitive impairment (CRCI) is frequently reported during cancer treatment, with 35% of patients experiencing cognitive issues even after treatment completion. Commonly reported impairments include difficulties with memory, attention, executive function, and processing speed, which often reduce daily functioning and quality of life (QoL). Despite its prevalence, CRCI remains underresearched across various cancer types, limiting understanding of the patient experience.ObjectiveThis study aims to synthesize the qualitative evidence regarding the lived experience of CRCI

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… This can lead to feelings of anxiety and frustration and a reduced QoL. Stress also exacerbated cognitive symptoms. … Participants frequently reported considerable frustration, particularly stemming from short-term memory and concentration impairments. The frustration was also due to difficulty completing tasks efficiently and accurately. …

Навигация потерь и рост хронических заболеваний: исследование по вопросу о физической активности и благополучии.

В этом исследовании изучается живой опыт пациентов с хроническими заболеваниями, с тем чтобы понять, каким образом значения, приписываемые хроническим заболеваниям, физической активности и благополучию, переплетаются. Это понимание имеет решающее значение для практики ухода, направленной на поддержку и повышение благосостояния. МЕТОДОЛОГИЧЕСКАЯ ДЕСИГН: Мы провели качественное исследование, основанное на герменевическо-феноменологии, с тем чтобы отразить жизненный опыт участников в описательной форме. В качестве руководящего принципа отчетности используется COREQ. ЭТИЧЕСКИЕ ВОПРОСЫ И УТВЕРЖДЕНИ

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… Although he acknowledges that he could go to the gym on his own, he feels insecure and unmotivated without the therapist's guidance, deepening his sense of frustration and helplessness. … She shares stories of depression and frustration but decided to take action by calling friends to swim and go to the gym. This sparked further motivation, and now she feels confident in accepting and conquering her illness. …

Изучение перспектив потребителей услуг в области здравоохранения на пути к интеграции питания в рутинную помощь с множественным склерозом: качественное исследование.

КОЛИЧЕСТВО: Люди, страдающие множественным склерозом, рассчитывают получить информацию о питании от медицинских работников (HCP), с тем чтобы самостоятельно справиться со своим заболеванием. Цель этого исследования заключалась в изучении опыта ПМСО в области обеспечения ухода, связанного с питанием, и в обеспечении понимания их потребностей и предпочтений в отношении того, каким образом его можно было бы обеспечить в рамках обычного ухода. МЕТОДЫ: Это качественное исследование, опирающееся на интерпретационный феноменологический подход, было проведено с использованием онлайновых целевых групп

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… Participants were unanimously frustrated and dissatisfied with how many HCPs, particularly neurologists, GPs and nurses, did not acknowledge nutrition or diet in their management plans. … However, they were frustrated by a perceived lack of HCP knowledge because the information they received was overgeneralised and insufficient to their needs. This frustration reflected unmet expectations for specific information and guidance. …

Unintentional weight loss, its associated burden, and perceived weight status in people with cancer.

PURPOSE: Unintentional weight loss (UWL) is a prevalent problem in people with cancer and is associated with poorer psychosocial outcomes. A gap exists in understanding whether and how perceived and/or weight status impacts experiences of UWL. Thus, we sought to examine subjective experiences of UWL in people with cancer, and whether perceived and/or actual weight status impacts these experiences. METHODS: Participants were recruited through Cancer Support Community's Cancer Experience Registry® and related networks. Participants completed an online survey that included the FAACT Anorexia-Cac

[Consensus, hedonism: the characteristics of new family and their consequences for the development of children].

Over the last three decades, the marital family model described by Durkheim at the end of the nineteenth century has undergone numerous chan … by their environment, the children are not prepared for life with its restrictions and unavoidable frustrations possibly experienced as persecutions. In the same way, when they have to meet the requirements of life in community, eg the discipline imposed within a college, these rules are more and more often felt by a pupil as unfair, arbitrary persecutions s …

Contextualizing Measurement: Establishing a Construct and Content Foundation for the Assessment of Cancer-Related Dyadic Efficacy.

This paper illustrates a rigorous approach to the initial phases of scale development when evaluating an existing construct, dyadic efficacy, in a new population. Cancer-related dyadic efficacy represents a couples' confidence in their conjoint abilities to manage the effects of cancer. Two samples of individuals diagnosed with cancer and their partners, along with a professional panel, contributed lay and content expertise, respectively. Thematic analysis was used to describe cancer-related dyadic efficacy and identify content domains. Cancer-related dyadic efficacy was conceptualized as mult

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… I found that very frustrating. It’s something as simple as a meal preparation. 4.2.2. … Item | Original a | Revised 1 | Deal with your arthritis frustrations? | Deal with your cancer-related frustrations 2 | Help you keep a positive attitude about living with arthritis? | Help you keep a positive attitude throughout your cancer experience? …

Health-Related Quality of Life Instruments for Clinical Trials in AL Amyloidosis: Report from the Amyloidosis Forum HRQOL Working Group.

Systemic AL (light chain) amyloidosis is a rare protein misfolding disorder associated with plasma cell dyscrasia affecting various organs leading to organ dysfunction and failure. The Amyloidosis Forum is a public-private partnership between the Amyloidosis Research Consortium and the US Food and Drug Administration Center for Drug Evaluation and Research with the goal of accelerating the development of effective treatments for AL amyloidosis. In recognition of this goal, 6 individual working groups were formed to identify and/or provide recommendations related to various aspects of patient-r

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… Neither the SF-36v2 nor the PROMIS-29 assess concepts such as anger, frustration, stress, difficulty coping, motivation, attractiveness, self-esteem, or cognition. … However, both miss some specific important aspects of social functioning and mental health (eg, frustration, stress), though the domains themselves are assessed. …

[The information of the schizophrenic patient: actuality].

Social isolation has got to be one of the greatest losses in schizophrenia. For many authors, people with schizophrenia can have no friends, no spouse, and sometimes no family. Two thirds of patients with schizophrenia return to their parents' house after discharge from a hospital for the first psychosi episode. Family members generally receive very little education as to what they can expect. They may not know the importance of medication compliance. Family members are the primary victims of violence from psychotic individuals, usually their own son or daughter, and most families cannot belie

Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care.

PURPOSE: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. METHODS: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. RESULTS: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotion

Healthcare professionals' perspectives of the management of people with palliative care needs in the emergency department of a UK hospital.

BackgroundThe Emergency Department (ED) is not always the optimal place for people with palliative care needs but is the most common route for treatment when urgent care is sought. The aim of this study,''REasons for PalLIative Care Admissions (REPLICA)' was to explore the perspectives of ED healthcare professionals of hospital admission or discharge via ED for palliative care patients.MethodsThis is a sequential mixed methods study comprising (i) quantitative descriptive analysis of Hospital Episode Statistics (HES) of palliative care patients (code Z51.5) who were admitted through ED in a We

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… (P2, consultant) Feelings of frustration were expressed about not being able to give more time and effort and provide better care. … Some participants were clearly frustrated by what they considered were inappropriate and sometimes repeated referrals, for example by GPs, care homes and hospices. …

Искусственный интеллект и наука о вкладе пациента: точка зрения людей с множественным склерозом.

Искусственный интеллект (АИ) может сыграть жизненно важную роль в переходе к прогнозной, профилактической и индивидуализированной медицине при условии, что мы руководствуемся наукой с помощью и с помощью пациента. Меры по достижению результатов, о которых сообщают пациенты (ПРОМ), представляют собой уникальную возможность для получения практических знаний от людей, живущих в условиях здоровья, и обеспечения их научной актуальности для всех других заинтересованных сторон. Несмотря на это, использование стандартизированных результатов, включая ПРОМ, в рамках научно-исследовательской системы и си

Регулирующие расстройства и качество жизни у пациентов с травматологической и трахеотической каннулой: обзор.

ВВЕДЕНИЕ: Операция по Трахеостомии (TCT) и последующее включение трахеиальной каннулы (TC) сопряжены с рядом физических, коммуникативных и психологических изменений для пациента. В этих клинических ситуациях часто наблюдаются такие расстройства настроения и расстройства, как болезненное беспокойство, депрессия и стресс, что сказывается на качестве жизни (QoL) и процессе реабилитации. Цель этого обзора состоит в изучении исследований, содержащихся в литературе по расстройствам регулирования (АЖД) у пациентов с ТХТ или ТЦ, и того, как это влияет на их QOL в ходе процесса реабилитации. МЕТОДЫ: Ис

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… The emotional and mental health of patients becomes important aspects of their recovery as numerous individuals encounter communication obstacles that result in feelings of frustration and anxiety. … Without the iPad, numerous patients faced frustration, anxiety, or depression because of communication obstacles. | Adjustment Disorder: anxiety and depression related to communication difficulties. …

Cancer survivorship: understanding the patients' journey and perspectives on post-treatment needs.

BackgroundCancer treatments have many adverse effects on patient's health leading to poor cardiorespiratory capacity, muscular- degeneration, fatigue, loss of strength and physical function, altered body-composition, compromised immune-function, peripheral neuropathy, and reduced quality of life (QOL). Exercise programs can significantly increase functional capacity when tailored to individual needs, thus improving health. Exercise interventions in cancer rehabilitation, when supported by appropriate nutrition can be effective in attaining a healthy weight and body-composition. The successful

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… Even younger, fit participants were cautious and felt frustrated by a lack of support and guidance; ‘you have to be careful about what kind of exercises you’re going to do…even sort of trying to get clarity about that they [HC professionals] were a bit like, why are you asking that question. … Cancer patients’ frustration over the vague information on exercise and physical activity provided by health care professionals’ has also been reported in a recent Italian study [ 31 ]. …

A critical care outreach team under strain - Evaluation of the service provided to patients with haematological malignancy during the Covid-19 pandemic.

PurposeCritical Care Outreach Teams (CCOTs) have been associated with improved outcomes in patients with haematological malignancy (HM). This study aims to describe CCOT activation by patients with HM before and during the Covid-19 pandemic, assess amny association with worse outcomes, and examine the psychological impact on the CCOT.Materials and methodsA retrospective, mixed-methods analysis was performed in HM patients reviewed by the CCOT over a two-year period, 01 July 2019 to 31 May 2021.ResultsThe CCOT increased in size during the surge period and reviewed 238 HM patients, less than in

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… The anxiety frequently turned into frustration when staff that the CCOT provided training for during the first surge were not allocated to Covid wards during the second surge. … The shift from holistic, optimal review and management to providing emergency care (‘firefighting’) may be the reason of the reported feelings of inadequacy and frustration, which were not justified either by process or patient outcomes. …

Codesigning a supportive online resource for Australian cancer carers: a thematic analysis of informal carers' and healthcare professionals' perspectives about carers' responsibilities and content needs.

ObjectiveTo gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia.Design and settingUtilising a previously tested codesign process, informal carers' experiences and perspectives, including those of healthcare professionals', were examined via focus groups and/or interviews. Data were analysed via thematic analysis.ParticipantsRural (n=9) and urban (n=11) carers', and healthcare professionals' (n=8) perspectives were collected. Carers participated in a focus group (n=9) or

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… Carers may experience relationship difficulties with patients, personal health issues, other family responsibilities and psychological difficulties, including anxiety, guilt, exhaustion, frustration and stigma. … (HCP-U3) Individual carers were also frustrated by professional support costs. …

Новая программа сознательности и психообразования для лечения усталости головного мозга, оценённая после повреждения мозга и множественных склерозов.

Фон: Усталость является общей долгосрочной проблемой после заболеваний, затрагивающих мозг, оказывающих существенное воздействие на трудоспособность, социальную деятельность и качество жизни. Лечение запрашивалось в системе здравоохранения и пациентами. Цель этого случайного экспериментального исследования состоит в том, чтобы оценить новую программу " Усталость мозга " и " Уменность " (BF-M) для участников, страдающих длительной усталостью после приобретенного повреждения мозга или множественным склерозом. БФ-М состоит из шести совещаний групп раз в две недели. Ведется мед

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… The psychological burden is considerable with emotional problems such as depression and/or anxiety, frustration, feelings of inadequacy, not being understood and not being able to take part in social life. A program for people suffering from BF combining these elements is lacking. … Not being able to manage work was frustrating, but it was also frustrating not to be able to manage daily living including family and friends. This was a common subject during the discussions and meetings. …

Haematological nurses' experiences about palliative care trajectories of patients with life-threatening haematological malignancies: A qualitative study.

AimsTo explore haematological nurses' experiences about the palliative care trajectories of patients with life-threatening haematological malignancies.DesignA qualitative study with a descriptive and explorative design.MethodsData were collected through 12 individual semi-structured interviews of nurses who work with patients with haematological malignancies from four hospitals in Norway. The data were analysed using systematic text condensation. The study was reported according to the Consolidated Criteria for Reporting Qualitative Research checklist.ResultsThree categories emerged from the d

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… (Nurse 6) Some nurses expressed frustration when doctors did not listen to their assessments and functioned as gatekeepers for introducing palliative care. … Several nurses described frustrating situations during weekends where a lack of planning often caused insecurity and decision aversion in doctors who did not have adequate knowledge of the patients' medical histories. …

Hypophosphatasia: Clinical Clues and Management Considerations.

This case report identifies typical manifestations of a patient with hypophosphatasia, a rare genetic condition in which mutations in tissue-non-specific alkaline phosphatase (TNSALP) enzymes cause low levels of alkaline phosphatase and defective bone mineralization. It explores common diagnostic clues from the history and laboratory evaluation, which can help clinicians identify the disorder. This case introduces a 49-year-old patient with a long history of fractures and dental abnormalities who was referred to endocrinology for evaluation of osteopenia. Further review of her laboratory data

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… Frustration among patients is often common due to a delay in diagnosis. … Living with hypophosphatasia can be difficult and frustrating for patients, who often go undiagnosed. …

Перевод и подтверждение арабской версии " Хронической болезни " , ожидаемой " Стигмы " у саудовских пациентов с множественным склерозом.

СПРАВОЧНАЯ ИНФОРМАЦИЯ: Ожидаемая стигматизация связана с опытом применения стигматизации или дискриминации со стороны других лиц в прошлом или настоящем по причине их хронической болезни. Люди, диагностированные хроническими заболеваниями, сообщают о том, что они подвергаются значительной стигматизации со стороны других лиц, включая социальное отторжение от друзей и членов семьи, прекращение работы со стороны работодателей и плохое обслуживание со стороны медицинских работников. Цель этого документа состояла в том, чтобы разъяснить процедуру перевода и психометрическую оценку арабской версии о