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Nutritional impact symptoms and dietary changes among women in a cancer support network: a qualitative analysis.

ObjectiveTo examine nutritional impact symptoms and dietary changes experienced by cancer patients in Trinidad, as well as the nutritional support and guidance they received during treatment.MethodA qualitative study was conducted of 12 adult cancer patients who were diagnosed within the last five years, undergoing treatment and recruited from a non-profit organisation. Participants' experiences with dietary changes and nutritional needs were examined through face-to-face interviews guided by 21 semi-structured questions. Interviews were recorded, transcribed and analysed thematically using De

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… and what to do when I eat. ” Chloe: “ But speaking to other patients , you get to know things that you can do to help boost your immune system , boost your blood count , and things that would help you. ” While participants were able to access information through these avenues, many still expressed frustration … Many participants expressed their frustration at having to rely on their own initiative to research and implement dietary changes, highlighting a significant gap in healthcare delivery. …

Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.

Eosinophilic granulomatosis with polyangiitis (EGPA) and hypereosinophilic syndrome (HES) are driven by persistently high eosinophil numbers, causing damage to tissues and organs. As rare diseases, they are often underappreciated by healthcare professionals. Using a social listening analysis, we collected patient and caregiver comments relating to EGPA and HES made on online social platforms between 1 January 2019 and 31 May 2020, in English, French, and German. Results were classified into key areas of interest. In total, 746 comments with consent to publish were collected mentioning EGPA, an

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… For both EGPA and HES, patients expressed feelings of loss of control, hopelessness, and isolation, as well as frustration with healthcare services. One patient with EGPA noted, “Every time I feel ill, I feel apologetic and ashamed.” … The rarity of their disease can also lead to a lack of disease awareness and understanding, which may lead to frustration and anxiety for patients. Most comments discussed personal experiences of loss of control and isolation, leading to negative impacts on patients’ lives. …

Individualized, Single Session Yoga Therapy to Reduce Physical and Emotional Symptoms in Hospitalized Hematological Cancer Patients.

Objective: Inpatient treatment of hematological cancer is among the most physically and mentally arduous cancer treatments, and it is associated with a number of common physical, emotional, and social symptoms that can negatively affect quality of life (QOL) for years following treatment. While treating symptoms during hospitalization holds promise for improving long-term QOL, successful approaches likely require multidisciplinary interventions. In this article, we describe a 4-year effort in program enhancement that incorporated an adjunctive single yoga therapy session during treatment for h

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… Seventy-two (13%) sessions were unfinished either because the patient fell asleep, because the session was interrupted by a medical procedure, or because the patient did not want to continue due to frustration or anxiety. No session was stopped early due to a patient’s reported pain. … While no session was stopped due to patient pain, 2 patients reported that they were too anxious or frustrated to finish the session. …

Patient Perspectives on Health Insurance Design: A Mixed-Methods Analysis.

There remains a persistent lack of patient-centered evidence on insurance reform and real-world experiences of patients with chronic disease. This study gathered insights around insurance design from chronic disease beneficiaries. This mixed-methods analysis comprised an online survey and virtual focus group sessions (August to December 2023) involving US residents with chronic disease and health insurance. Patients' perspectives on insurance design were explored. Survey data were analyzed descriptively. Key themes were identified from focus group transcripts and direct observations. In total,

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… Patients explained how denial of initial medication coverage often led to disease exacerbation and expressed frustration with paying premiums for insurance plans that could potentially deny them access to essential or life-saving medications. … I don’t know how much room I have on my credit cards … it’s frustrating.” Generalized myasthenia gravis, male Declaring bankruptcy | “I have filed bankruptcy twice in my life. I’m only 42. I mean, when you’re 18, and you’re $10,000 in debt, what do you do? …

Утверждение а/ Six- Короткая форма с множественным эффектом склероза (MSIS-SF) для эффективной оценки физического расстройства, выявленного пациентом.

Результаты, о которых сообщают пациенты, в значительной степени отражают живой опыт лиц с множественным склерозом (МС); однако, учитывая широкий спектр симптомов НР, всеобъемлющая оценка может быть обременительной, особенно с помощью пространных вопросников. Запросы по шкале влияния MS twenty различные физические трудности (MSIS-20). В 1150 :: пациенты, имеющие MS, оценка внутренней последовательности указывает на избыточность MSIS-20 (Альфа Хронбаха: 0.96), но оптимальная внутренняя последовательность (0.90) а/ six- Короткая форма (MSIS-SF; первая six MSIS, пункты). :: MSIS-20 и MSIS-SF проде

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… Note also that lengthy surveys may lead to less thoughtful responses due to respondent fatigue, frustration, or boredom. …

Living with relapsed myeloma: Symptoms and self-care strategies.

Aims and objectivesTo explore which symptoms relapsed myeloma patients experience and what self-care strategies are used.MethodsThis was a qualitative study utilising focus group interviews (n = 4) with relapsed myeloma patients (n = 15) and carers (n = 9). The focus groups were analysed and guided by thematic analysis.ResultsThree major themes with subthemes were identified following analysis of the interview data: "difficult symptoms; "self-care" and "feeling vulnerable." These findings indicate the challenges relapsed myeloma patients experience with ongoing symptoms and highlight the impor

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… However, they often felt frustrated because although it was a symptom that was commonly asked at clinic visits, often very little was done about it. … Self‐care: Taking action Patients’ and carers’ frustration in relation to unmet symptom burden was evident in our findings. In addition to this, self‐care was reported as an important aspect of the myeloma patient's journey especially when supportive care needs were felt to be unmet. …

Опыт и проблемы лиц с множественным склерозом и низкой посещаемостью клинических исследований: качественное исследование.

СПРАВОЧНАЯ ИНФОРМАЦИЯ: Многие люди с множественным склерозом (МС) в Европе сталкиваются с ограниченным доступом к лечению и уходу. Исследования проблем, с которыми сталкиваются люди, не имеющие доступа к специализированному уходу и лечению, являются ограниченными, что оставляет пробел в понимании опыта и проблем тех, кто не посещает специализированный уход. Таким образом, мы намеревались изучить опыт людей с НР, которые не посещают регулярные клинические осмотры в специализированных клиниках НР в Дании, с уделением особого внимания самообслуживанию. МЕТОДЫ: В соответствии с подходом Брауна и К

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… A participant said: “ But not being a part of society on equal terms with everyone else , that’s frustrating. It is a constant struggle for me. I still haven’t found my place in it .”(3T). … Participants expressed frustration that these rigid categorizations did not accommodate their individual circumstances but rather imposed inflexible limitations. …

Exercise barriers and facilitators during hematopoietic stem cell transplantation: a qualitative study.

ObjectiveAlthough exercise is beneficial in patients undergoing hematopoietic stem cell transplantation (HSCT), motivating patients to exercise is challenging. We aimed to understand exercise barriers and facilitators during HSCT treatment while participating in a daily unsupervised exercise programme.ParticipantsPatients scheduled to have HSCT.Study design6 participants were included in this descriptive qualitative study during HSCT treatment while participating in an exercise programme to identify perceived barriers and facilitators of the exercise. An average of three semi-structured interv

"Anecdotal evidence": why narratives matter to medical practice.

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Quality-of-life issues and symptoms reported by patients living with haematological malignancy: a qualitative study.

BackgroundOur aim was to identify health-related quality-of-life (HRQoL) issues and symptoms in patients with haematological malignancies (HMs) and develop a conceptual framework to reflect the inter-relation between them.MethodsA total of 129 patients with HMs were interviewed in a UK multicentre qualitative study. All interviews were audio recorded, transcribed and analysed using NVivo-11.ResultsOverall, 34 issues were reported by patients and were grouped into two parts: quality of life (QoL) and symptoms. The most prevalent HRQoL issues were: eating and drinking habits; social life; physic

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… Fourteen patients expressed disappointment and frustration about the diagnosis and the treatment. One patient expressed suicidal thoughts because of the condition [ Table 4 : 4(a)]. Forty-three (33%) patients mentioned that they were distressed during and after the treatment. … The main reasons for impaired sexual life were tiredness, lack of energy, lack of confidence, skin bruises, scars, disappointment and frustration because of the disease and treatment. Seven patients expressed concerns about their body image. …

Аспекты достоинства в семьях, обеспечивающих уход за лицами, страдающими множественным склерозом.

СПРАВОЧНАЯ ИНФОРМАЦИЯ: Основное внимание в этом исследовании уделяется сохранению достоинства и посягательству на достоинство членов семьи, обеспечивающих уход за лицами, страдающими множественным склерозом. АИМ: Цель исследования заключалась в углублении понимания того, как семьи, ухаживающие за лицами, страдающими множественным склерозом, воспринимают сохранение или лишение их достоинства. Применялся герменевый подход. МЕТОДЫ ИССЛЕДОВАНИЙ: Авторы провели научные опросы в форме бесед с восемью лицами, обеспечивающими уход за членами семьи. АНАЛИЗ И МЕТОДЫ ТОЛКОВАНИЯ: Нашим компасом и руководс

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… The frustration with the LWA is shown clearly in the following example where a wife of a person with MS says to her husband: I must call LWA , and her husband answers: No, I can’t stand it, because at that place there are only negative things all the way (1) . … The same family caregiver becomes frustrated and powerless because she is not being listened to. She continues: And then I feel that I have too little knowledge about matters, for example about what rights he has, and we sure do not get any information from the LWA, I feel . …

Дифференциация по признаку расы и места в области многоразового склерозового лечения: качественное исследование опыта пациентов.

Множественный склероз - это нейродегенеративное и нейро-воспалительное заболевание, вызывающее различные симптомы, включая физические и когнитивные области. Предыдущие исследования показали, что расовые диспропорции характерны для многочисленных неврологических результатов склероза, при этом чернокожие люди сталкиваются с более тяжелыми последствиями, чем их белые коллеги. ЦЕЛЬ: Изучение различий по признаку расы и места в опыте оказания многочисленных услуг по склерозу среди чернокожих и белых участников. МЕТОДЫ: Качественные данные были собраны у 20 взрослых с множественным склерозом в ходе

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… (BMH)  Negative sentiment “So that’s been probably one of the big frustrations for me is trying to figure out what is good care, what is appropriate care, and what is unnecessary care.” … Some participants expressed frustration for not having an MS specialist and experiencing long wait times for an appointment. Theme 2: Health literacy Participants responded to questions such as “ How much information do you feel like you have about MS ?” …

Effects of Physical Exercise Intervention on Psychological and Physical Fitness in Lymphoma Patients.

Background and objectives: Lymphoma patients experience a psychological and physiological decline that could be reversed by exercise. However, little is known about the effects of the exercise on psychological and physical fitness variables. Therefore, the purpose of this longitudinal study was to assess self-efficacy, fatigue and physical fitness before and after an eight-week exercise intervention. Materials and Methods: Thirty-six participants (54.4 ± 19.1 years) performed a supervised exercise program (~60 min, 2d·wk-1). Each session included a combined progressive training of cardiorespir

Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers.

Expectations relating to treatment and survival, and factors influencing treatment decisions are not well understood in adult patients with acute myeloid leukemia. This study analyzed combined findings from a targeted literature review with patient-reported information shared on YouTube to further understand patient perspectives in hematologic cancers and, in particular, acute myeloid leukemia. The targeted literature review included articles concerning patient (aged ≥ 18 years) experiences or perspectives in acute myeloid leukemia or other hematologic cancers. YouTube video selection criteria

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… (patient with AML) [ 37 ] Patients’ worries and frustrations The impact on personal relationships, both current and future | | “What I worry about is how I’m going to, at my age, how am I going to meet someone and build a future with someone. … (patient with lymphoma, breast or kidney cancer) [ 44 ] Another common theme was the worries and frustrations experienced by patients following their diagnosis. These ranged from dealing with the side effects of treatment to the impact of their diagnosis on personal relationships. …

Navigating Ethical Challenges in CAR-T Treatment.

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… Moral distress can be defined as the mental burden caused by the experience of an ethical challenge and is related to a plethora of negative emotions, such as sadness, frustration, feelings of powerlessness, and anxiety (Morley et al., 2019 ). … Nurses’ widespread job dissatisfaction, burnout, and frustration with health benefits signal problems for patient care. …

Пациенты испытывают на себе воздействие множественных склерозов и корректирующих болезни терапии.

ЦЕЛЬ: Для регулирования множественных склерозов (MS) жизненно важное значение имеют методы лечения, корректирующие заболевания (DMT), однако исследования, проводимые с использованием административных данных, часто исключают предпочтения пациентов и факторы, которые врачи учитывают при принятии решений о лечении. Данные об опыте пациентов имеют важнейшее значение для понимания и улучшения инициирования, соблюдения и результатов лечения НР. МЕТОДЫ: С декабря в Интернете было проведено перекрестное обследование взрослых в США, имеющих MS или клинически изолированный синдром. 2022 по январь 2023 К

The impact of chemotherapy-induced inner ear damage on quality of life in cancer survivors: a qualitative study.

PurposeThis study aimed to explore the burden of inner ear damage (ototoxicity) on adults living with and beyond cancer treated with chemotherapy and the impact on their quality of life (QoL). Furthermore, this study aimed to explore patient awareness surrounding chemotherapy-induced inner ear damage, known as ototoxicity, and assess what support they had been offered.MethodsParticipants were adults who had undergone chemotherapy, recruited from cancer clinics, charities and social media. Using semi-structured interviews and fieldnotes, an inductive thematic analysis was used to develop key th

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… (P14) “I struggled to engage in anything because the tinnitus was frustrating, I wouldn’t engage in much more.” (P16) “For my sleep I take sedatives. I hear it [tinnitus] when it’s quiet but I deal with it because I know at some point, I’ll be asleep, and it’ll be gone.” … There were mentions of feelings of exhaustion from the continuous tinnitus sounds which also caused sleep disturbances, as well as frustration at how their ototoxic symptoms affected their ability to communicate effectively with others. …

Qualitative analysis of cancer care experiences among rural cancer survivors and caregivers.

PurposeRural (vs urban) patients experience poorer cancer outcomes and are less likely to be engaged in cancer prevention, such as screening. As part of a community needs assessment, we explored rural cancer survivors' and caregivers' experiences, perceptions, and attitudes toward cancer care services.MethodsWe conducted 3 focus groups (N = 20) in Spring 2021 in rural Nebraska.FindingsThree patterns of cancer diagnosis were regular care/screening without noticeable symptoms, treatment for symptoms not initially identified as cancer related, and symptom self-identification. Most participants, r

'Unpacking' pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives.

ObjectivesTo explore alignment of experiences before lymphoma and myeloma diagnosis with the appraisal, help seeking and diagnostic intervals in the Model of Pathways to Treatment (MPT).DesignA qualitative study using in-depth semistructured interviews with patients and relatives. Interviews were transcribed verbatim, anonymised and analysed using qualitative description.SettingA UK population-based haematological malignancy patient cohort.ParticipantsFifty-five patients (35 lymphoma, 20 myeloma: diagnosed 2014-2016) and 28 relatives participated, within around a year of the patient's diagnosi

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… This was sometimes associated with HCPs expressing frustration about their inability to explain symptoms: ‘(GP) said: “come back in four weeks…I’m getting me books out…I don’t understand what the symptoms are pointing me to” [L24, paraphrasing GP]. … It also resulted in distress, anxiety and frustration: ‘‘I was getting towards my wits’ end, because I knew that there was something wrong, and I just felt as if (HCPs) weren’t taking me seriously’ [L06]. …

Effect of Workplace Violence on Turnover Intention: The Mediating Roles of Job Control, Psychological Demands, and Social Support.

Exposing nursing staff to workplace violence workplace violence (WV) affects their psychological, emotional, and physical health; engenders increased workload; affects the medical reciprocity between nurses and patients; and ultimately leads to staff turnover intention. To preventing WV, development of intervention strategies and WV prevention measures are crucial. This study discusses the mediating effect of job control, psychological needs, and social support on WV and turnover intention. Through this discussion, this study aims to aid medical institutions in reducing their nursing staff tur

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… Despite encountering violence and frustrating situations, clinical nurses remain capable of acting autonomously; for example, nurses are capable of saving lives in emergency situations. 60 Therefore, job control cannot have a mediating effect on WV and turnover intention. … Comprehensive social support (eg, supervisors who are attentive, willing to listen to the victim’s story, and support the victim in claiming compensation) can mitigate the pressure, distress, and frustration associated with violence. 41 , 65 The aforementioned management measures can mitigate the increased …