Palliative & Supportive Care最新文献

Objectives: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain.

Methods: Families of children (ages 5-25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children's hospital. Mothers (n = 55; 87% White) and fathers (n = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role.

Results: Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress.

Significance of results: In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers' strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers' social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.

Objectives: Current recommendations do not separate adult and pediatric palliative care (PC) in terms of the personnel needed, or the distribution of care between community and hospital-based services. We evaluated the differences in the utilization of pediatric and adult hospital PC services for non-oncological patients.

Methods: Retrospective study. Parameters included demographics, underlying diagnoses, number of consultations per patient, duration of PC involvement, and follow-up. All non-oncology patients seen by the adult or pediatric PC teams between June 2021 and July 2023 at a single tertiary hospital.

Results: A total of 445 adults and 48 children were seen by the adult and pediatric palliative teams, respectively. Adults were primarily seen in the terminal stages of common chronic diseases, with a high mortality rate. Children were mainly seen at a very young age with rare and complicated diseases. Children needed longer duration of follow-up (114 vs. 5 days, p < 0.001), more consultations (8.5 vs. 4, p < 0.001), and died less while hospitalized (25% of patients vs. 61.6%, p < 0.001).

Significance of results: Adult patients had relatively common diseases, seen and treated often by primary care practitioners, whereas children had rare life-limiting diseases, which primary care pediatricians may have limited experience with, and which require involvement of multiple specialized hospital-based services. Future healthcare PC planning should consider these factors in planning the primary setting for PC teams, specifically more training of adult general practitioners in PC skills, and earlier referral of pediatric patients to hospital-based PC.

Objectives: Patients with advanced cancer present various symptoms as their disease progresses. Among these, fatigue is a frequent symptom in patients with advanced cancer and is associated with decreased quality of life (QOL). However, there are few reports regarding its association with thiamine deficiency (TD).

Methods: We report a case in which we found TD in a patient with advanced lung cancer who presented with weight loss, significant fatigue, and appeared to have a worsening general condition, for whom symptoms were dramatically improved within a short period of time by intravenous administration of thiamine.

Results: The patient was a 76-year-old woman who had been diagnosed with lung cancer and liver metastases 6 months earlier. Due to interstitial pneumonia, she was not a candidate for chemotherapy and so palliative care was started. At 8 months after initial diagnosis, the patient complained of fatigue during a medical examination, so a blood sample was taken. A week later, she visited the hospital with a cane. She felt extremely fatigued and was unable to stand, but results from the previous blood test revealed that a TD. The fatigue disappeared 15 minutes after intravenous administration of thiamine and she was able to return home without the cane.

Significance of results: Fatigue is a frequent symptom in advanced cancer patients, and TD may be the underlying cause. Inclusion of TD in the differential diagnosis may contribute to improving patient QOL.

Objectives: This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR).

Methods: The PubMed, MEDLINE Complete, Cochrane, and Embase databases were searched for articles using the search strings combinations of keywords such as Palliative care, Hindu, Hinduism, End of Life Care, India, Spirituality, and South Asian. Once inclusion criteria were applied, 40 manuscripts were eligible for review.

Results: Our results are organized into the following 4 sections - how Hindu religious or spiritual beliefs intersect with the physical, psychological, and spiritual domains: and decision-making at the EOL.

Significance of results: Hindu beliefs, in particular the role of karma, were shown to impact decision-making regarding pain management, ANH and CPR, and advance directive completion. The complexity of Hindu thought leaves a significant role for interpretation and flexibility for individual factors in decision-making at the EOL.

Objectives: The aim was to gain a deeper understanding of the meaning of reconciliation as a concept in palliative care. Terminal illnesses affect almost all aspects of life and being close to death may lead to a need for reconciliation. The end of life is stressful on an existential level for both patients and relatives. It can therefore be of relevance for palliative care nurses to understand the meaning of reconciliation.

Methods: This study used a design for a literature study in accordance with a hybrid model. A deductive qualitative content analysis of autobiographies about being seriously ill and in a palliative stage in life was used to test the meaning of reconciliation. Ethical aspects concerning the use of autobiographies and the ethical principles of the Helsinki Declaration were considered. The theoretical perspective was the caritative theory of caring.

Results: The result showed that for patients in palliative care, reconciliation can be described as a strive for acceptance, to live in a truthful way, to forgive and be forgiven. People wish to create meaning in their existence and reconcile as a whole in body, spirit, and soul. By striving to unite suffering, life, and death as well as a peaceful relationship with relatives, people can achieve reconciliation at the end of life. Reconciliation is something ongoing and can be a force in what has been, what is, and what will be.

Significance of results: We conclude that reconciliation is a concept of importance when caring for patients in end-of-life care. However, reconciliation can be expressed in different ways without necessarily using the concept itself. A broader and deeper understanding of the concept facilitates conversations about the meaning of reconciliation in palliative care and can enable patients who strive to achieve reconciliation to be more easily identified and supported.

Objective: Palliative care (PC) faces a workforce crisis. Seriously ill patients surpass the supply of PC cliniciansin their work clinicians face repeated loss and extreme suffering which can have deleterious consequences, such as burnout and attrition. We urgently need interventions that foster thriving communities in this emotionally complex environment. Storytelling represents a promising path forward. In response to widespread loneliness and moral distress among PC clinicians before, during, and after the early months of the COVID-19 pandemic, we created the Palliative Story Exchange (PSE), a storytelling intervention to build community, decrease isolation, and help clinicians rediscover the shared meaning in their work. This paper discusses this novel intervention and initial program evaluation data demonstrating the PSE's impact thus far.

Methods: Participants voluntarily complete a post-then-pre wellness survey reflecting on their experience.

Results: Thus far, over 1,000 participants have attended a PSE. In the fall of 2022, we began distributing a post-then-pre-evaluation survey. To date, 130 interprofessional participants from practice locations across 10 different countries completed the survey. Responses demonstrate an increase in the connection that participants felt toward their work and the larger palliative care community after attending a PSE. Further, more than half of all free-text responses include terms such as, "meaningful," "healing," "powerful," and "universal," to describe their participation.

Significance of results: Training programs and healthcare organizations use the humanities to support clinician wellness and improve patient care. The PSE builds upon this work through a novel combination of storytelling, community co-creation using reflection, and shared meaning making. Initial survey data demonstrates that after attending a PSE, participants feel increased meaning in their work, in the significance of their own stories, and connection with the PC community. Moving forward, we seek to expand our community of practice, host a facilitator leadership course, and rigorously study the PSE's impact on clinician wellness outcomes.

Objectives: Cancer is an enormous public health burden among Black and Latinx cancer survivors, and they are at risk of facing barriers to accessing cancer treatment and support in the United States. This study explored the unique challenges and experiences faced by Black and Latinx cancer survivors through the lens of their caregivers, including the specific cultural, social, and systemic factors that influence cancer survivorship experience and quality of life within these communities in the United States.

Methods: We used a qualitative descriptive design for the study, and conducted 6 focus group discussions (3 Latinx and 3 Black groups) with a total of 33 caregivers of cancer survivors, (Mean age = 63 years). Data were analyzed using inductive content analysis.

Results: We identified 3 main themes: (1) families as (un)stressors in survivorship such as the vitality of social connections and families as unintended burden; (2) responses after diagnosis specifically whether to conceal or accept a diagnosis, and (3) experiencing health care barriers including communication gaps, biased prioritizing of care, and issues of power, trust, and need for stewardship.

Significance of results: The findings align with previous research, highlighting the complex interplay between cultural, familial, and healthcare factors in cancer survivorship experiences within underserved communities. The study reiterates the need for culturally tailored emotional, physical, financial, and informational support for survivors and their caregivers. Also, to improve quality of life, the study highlights a need to strengthen mental health and coping strategies, to help address psychological distress and improve resilience among survivors and their caregivers.

Objectives: Inadequate access to cancer care, high mortality, and out-of-pocket expenditure contribute to health-related suffering in low- and middle-income countries, making palliative care a relevant option. How palliative care development has alleviated suffering is not systematically studied, necessitating this review's conduct. The objective of this systematic review with a framework synthesis approach is to identify and map the dimensions and indicators of cancer palliative care development and the components of integration between cancer and palliative care in LMICs.

Methods: Uni- and multi-disciplinary databases like Cochrane, MEDLINE (PubMed), EMBASE, CINAHL Complete, and PsycINFO will be systematically searched for eligible studies exploring cancer palliative care development in LMICs and their contribution to alleviating health-related suffering in the cancer context. Our selection process will encompass countries classified by the World Bank as low-income (26 countries), lower-income (54 countries), and upper-middle-income (54 countries).

Results: Review findings will be synthesised and analysed using a best-fit framework synthesis method using 2 frameworks (the WHO model of components and indicators for palliative care development and integration elements between oncology and palliative care), and the findings will be developed as themes and subthemes, and patterns interpreted using these 2 models.

Significance of results: This review will analyse the development of cancer palliative care in LMICs. It will identify gaps in provision, solutions derived at the regional level to address them, and best practices and failed models with reasons underpinning them.