Journal of palliative medicine最新文献

Context: Social determinants of health (SDOH) impacted the quality of home hospice care provided during the COVID-19 pandemic. Perspectives from professionals who provided care identify challenges and lessons learned from their experience. Objective: To examine hospice professionals' perspectives of how SDOH affected the delivery of high-quality home hospice care in New York City (NYC) during the COVID-19 pandemic. Methods: We conducted semistructured interviews with 30 hospice professionals who delivered care to home hospice patients during the COVID-19 pandemic in NYC using a qualitative descriptive design. Purposive sampling was used to recruit professionals from a range of disciplines including physicians, advanced practice providers, nurses, social workers, chaplains, and hospice administration and management. Participants worked for one of two large NYC metro hospices and one outpatient palliative care practice serving the five boroughs of NYC and the surrounding suburbs. Rapid qualitative analysis was used to identify themes. Results: Thirty hospice professionals were interviewed, spanning a variety of clinical and administrative roles. Most (21 out of 30) reported that social determinants affected access and/or delivery of equitable hospice care. Two key themes emerged from interviews: (1) SDOH exist and affect the delivery of high-quality care and (2) disparities were exacerbated during the COVID-19 pandemic resulting in barriers to care. Subthemes outline barriers described by hospice professionals: decreased hospice enrollment, telehealth challenges, resulting in deficient patient/family education, shortages of nursing assistants in some neighborhoods, and diminished overall quality of hospice care for some patients. SDOH created barriers to hospice care through neighborhood factors, resource barriers, and system challenges. Conclusion: SDOH provide a context to understand disparity in the provision of hospice care. COVID-19 exacerbated these conditions. Addressing multidimensional barriers created by SDOH is key in creating high-quality and equitable hospice care, particularly during a crisis.

Background: Constipation is an uncomfortable symptom experienced by many patients with advanced cancer, and it decreases the quality of life. Several studies have advised pharmacological therapies for constipation management, whereas others have promoted nonpharmacological approaches that promote changes in the patient's lifestyle. However, constipation management by nurses has not yet been systematically reviewed in patients with cancer. Therefore, this study conducted a scoping review of nursing support focused on nonpharmacological therapies offered to relieve constipation in patients with cancer. Methods: The review was guided by Arksey and O'Malley's five-stage scoping review framework. We searched the databases of PubMed, Cumulative Index to Nursing and Allied Health Literature, CENTRAL in the Cochrane Library, and Ichushi-Web of the Japan Medical Abstract Society from the databases' inceptions to August 31, 2023, using various search terms such as "cancer," "constipation," and "nursing care." Results: A total of 1501 articles that met the eligibility criteria were identified; of these, 5 articles were selected, and 1 additional article was found via handsearching. The final sample included six articles. We categorized the articles into three major nursing support types: acupressure, aroma massage to the abdomen, and self-management education. Five studies used a randomized controlled trial (RCT) design, including one with a randomized, waiting-list controlled trial, and one used a non-RCT design. All included studies showed the effectiveness of nonpharmacological interventions to improve constipation. Conclusion: This study also identified three types of nursing support for patients with cancer to relieve constipation. However, because of the small sample size, further evidence is required.

Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of VMC. Methods and Materials: A structured interview was used alongside two versions of VMC to solicit AYA preferences and feedback regarding content and layout changes. Results: Overall, participants preferred Version 2; and largely agreed on the inclusion of new pages related to their personal information, children, and additional reflections. Most AYAs (95.5%) found the guide helpful for thinking about their care. Conclusions: Study findings support updates to VMC that specifically reflect AYAs end-of-life (EoL) preferences and emphasize the value of engaging AYAs in ACP conversations directly related to their specific concerns, priorities, and preferences. Use of VMC has potential for enhancing overall quality of care and quality of life for AYAs at EoL.

Introduction: The needs of patients living with malignant neoplasm, and those of their families and care partners, require a multidimensional and interdisciplinary approach. By systematically assessing these needs with validated tools, healthcare professionals can identify and monitor therapeutic objectives, interventions, and results. Objective: At the Catalan Institute of Oncology (ICO), we set out to update the ICO Toolkit-a set of instruments for assessing the physical, emotional, and social needs of palliative care patients. Methods: We conducted a non-systematic review of the most common instruments currently used for multidimensional assessment of cancer patients nearing the end of life and then applied the Delphi method to achieve consensus on the instruments to be included in the updated ICO Toolkit-2. Initial consensus was obtained via interobserver agreement within a discussion group of experts, drawing on their daily clinical practice, and the published evidence. The Delphi method was then used to survey a representative sample of 22 experts from the ICO's three interdisciplinary palliative care teams. Results: The final 19 instruments selected for the ICO Toolkit-2 achieved a degree of consensus of 90%-100%. Conclusions: The updated ICO Toolkit-2 facilitates a multidimensional, systematic, objective, and measurable assessment of the needs of malignant neoplasm patients throughout their cancer journey. Uptake of the new toolkit could improve the care and support provided to patients and their families and care partners.

Introduction: Hospital-based supports for families following the death of a child are rare. Virtual interventions may address key barriers to providing bereavement care, but little is known about their acceptability, feasibility, and efficacy. Methods: Our hospital's palliative care program offered a six-week closed virtual support group for bereaved parents five times between 2021 and 2024. Measures were administered pre- and post-intervention to assess changes in meaning making and quality of life. A feedback survey and recruitment, attendance, and retention rates evaluated acceptability and feasibility. Results: In total, 36 parents (76% women) attended at least one group session and provided data. On average, participants attended 4.53 of 6 sessions. Participants endorsed high satisfaction with the intervention. There were no significant changes in meaning making or quality of life. Conclusion: This virtual support group was acceptable and feasible for bereaved parents. Additional research with larger, more diverse samples and more robust designs is needed.

The literature available on the topic of education programs for noncancer patients' informal caregivers (ICs) is heterogeneous and fragmented in the setting of palliative care (PC). We conducted a scoping review (ScR) to map the literature on educational programs for ICs in home-based PC, considering the available reviews, qualitative studies, observational studies, studies of validation of measurement tools, uncontrolled trials, nonrandomized controlled trials, and feasibility studies. This ScR included 21 eligible records by searching PubMed, Web of Science, Embase, Scopus, and CINAHL databases. The most common types of study designs were literature review (28%), qualitative research (24%), and experimental or quasiexperimental research (19%). A total of 57% of educational interventions or programs were mainly supplied by nurses, alone or with other health professionals; specifically, nurses mostly led supportive intervention (n = 2; 25%), education programs (n = 2; 25%), and app development. Different factors at the microsystem, macrosystem, mesosystem, and exosystem levels might help or hinder the implementation of IC education. Although ICs might more easily access online programs, accessibility and digital exclusion might represent significant barriers. Supportive interventions might positively affect family ICs' preparedness, competence, burden, care outcomes, and experiences related to their role; moreover, it might increase ICs' self-rated competence in all key areas: physical, emotional, psychological, social, informational, and spiritual. ICs can improve their knowledge, confidence, and attitudes toward PC. The literature summary might render the assistance more accessible to ICs to improve the quality of caregiving and nursing care linked to patient and caregiver outcomes. However, robust studies (e.g., randomized controlled trials) are still required to identify and establish the efficacy of each described intervention and, therefore, offer tailored approaches considering the diverse diseases and social and cultural characteristics of patients and ICs.

Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two subspecialties in caring for CMC. Objectives: The aim of this study is to explore the distinct and overlapping roles and responsibilities of pediatric complex care and palliative care teams as identified by providers when caring for a shared population of CMC and their families. Design: Qualitative analysis of semi-structured interviews. Settings/Subjects: Pediatric complex care and palliative care providers (physicians and nurse practitioners) actively caring for CMC at academic medical centers in the Midwestern United States. Measurements: Data obtained from semi-structured interviews were audio-recorded, transcribed, coded, and analyzed by two independent reviewers using thematic analysis. Results: Interviews revealed that both programs operate within a spectrum of clinical roles, thematically organized as complex-leaning, palliative-leaning, or blended. Responses highlighted that clinical roles are more likely defined by relationships established between specific providers and families, instead of by clear boundaries between the two programs. Conclusions: Pediatric complex care and palliative care teams provide both distinct and overlapping roles in caring for CMC. This overlap can vary between institutions and individual provider-caregiver dyads. Further studies are needed to explore collaborative practices on shared patients and caregiver perceptions on the benefits and challenges of utilizing both teams concurrently. Key Message: This qualitative study of providers of CMC highlights the overlapping roles and responsibilities between complex care and palliative care teams in caring for a shared population of patients and families.