Developing a National Implementation Strategy to accelerate Uptake of Evidence-Based Family Caregiver Support in Us Cancer Centers

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: top factors for developing new caregiver programs were that the program be: consistent with the cancer center\u27s mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers

Availability of Family Caregiver Programs in Us Cancer Centers

IMPORTANCE: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. OBJECTIVE: to describe and characterize the availability of family caregiver support programs in US cancer centers. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer-accredited US cancer centers. Data analysis was performed in May and June 2023. MAIN OUTCOMES AND MEASURES: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. RESULTS: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ2 = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). CONCLUSIONS AND RELEVANCE: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions

A scoping review of global patterns in reporting race, ethnicity, nationality or religion in palliative care randomised controlled trials: Recommendations for transparency

Background: Though randomised controlled trials of non-pharmacological palliative care interventions have shown positive outcomes, findings are often generalized with limited consideration for the impact of the influence of race, ethnicity, nationality, or religion on said outcomes. Aim: To identify trends and gaps in global reporting of racial, ethnic, nationality, and religious demographics in non-pharmacological palliative care randomized controlled trials. Design: We conducted a scoping review guided by the Joanna Briggs methodology, Data Sources: Global randomized controlled trials published in English, between 1999-2021 extracted from databases: Cochrane, PubMed and Scopus. Inclusion criteria were non-pharmacological palliative care interventions for people with serious conditions reporting on one or more of the demographics of race, ethnicity, nationality, or religion. Results: Our review included 131 (44%) articles published from 19 countries, predominantly the USA (n=84, 64%). Most studies focused on cancer (n=71, 54%) in inpatient settings (n=85, 64%). Race was the most commonly reported demographic (n=93, 70%), followed by ethnicity (n=54, 41%), religion (n=46, 35%), nationality (n=20, 15%). Within racial reporting, 86 (92%) indicating a majority White/Caucasian sample. Only 14 (10%) articles provided context connecting participant demographics to intervention outcomes. Demographic data was discussed only as a limitation to generalizability in 18 cases (41%). Conclusions: Improving greater transparency in study reporting of social and historical context about population demographics, including specific demographic data collected, may better identify unmet palliative needs, facilitate cross-cultural interpretation, and improve adaptation and implementation of non-pharmacological palliative care interventions

A Biobehavioral Perspective on Caring for Allogeneic Hematopoietic Stem Cell Transplant Survivors with Graft-Versus-Host Disease

Among the potential complications of allogeneic hematopoietic stem cell transplantation (HSCT), graft-versus-host disease (GVHD) is common and associated with significant physical and psychosocial symptom burden. Despite substantial advances in GVHD treatment, the global immune suppression that frequently accompanies GVHD treatment also contributes to high rates of physical and emotional suffering and mortality. The complex manifestations of GVHD and its treatment warrant a multidisciplinary team-based approach to managing patients' multi-organ system comorbidities. A biobehavioral framework can enhance our understanding of the complex association between medications, physical symptoms, and psychosocial distress in patients with GVHD. Hence, for this perspective, we highlight the importance of addressing both the physical and psychosocial needs experienced by patients with GVHD and provide guidance on how to approach and manage those symptoms and concerns as part of comprehensive cancer care

Optimizing the Global Nursing Workforce to Ensure Universal Palliative Care Access and Alleviate Serious Health-Related Suffering Worldwide

Context: Palliative care access is fundamental to the highest attainable standard of health and a core component of universal health coverage. Forging universal palliative care access is insurmountable without strategically optimizing the nursing workforce and integrating palliative nursing into health systems at all levels. The COVID-19 pandemic has underscored both the critical need for accessible palliative care to alleviate serious health-related suffering and the key role of nurses to achieve this goal. Objectives: 1) Summarize palliative nursing contributions to the expansion of palliative care access; 2) identify emerging nursing roles in alignment with global palliative care recommendations and policy agendas; 3) promote nursing leadership development to enhance universal access to palliative care services. Methods: Empirical and policy literature review; best practice models; recommendations to optimize the palliative nursing workforce. Results: Nurses working across settings provide a considerable untapped resource that can be leveraged to advance palliative care access and palliative care program development. Best practice models demonstrate promising approaches and outcomes related to education and training, policy and advocacy, and academic-practice partnerships. Conclusion: An estimated 28 million nurses account for 59% of the international healthcare workforce and deliver up to 90% of primary health services. It has been well-documented that nurses are often the first or only healthcare provider available in many parts of the world. Strategic investments in international and interdisciplinary collaboration, as well as policy changes and the safe expansion of high-quality nursing care, can optimize the efforts of the global nursing workforce to mitigate serious health-related suffering

Optimizing the Global Nursing Workforce to Ensure Universal Palliative Care Access and Alleviate Serious Health-Related Suffering Worldwide

Palliative care access is fundamental to the highest attainable standard of health and a core component of universal health coverage. Forging universal palliative care access is insurmountable without strategically optimizing the nursing workforce and integrating palliative nursing into health systems at all levels. The COVID-19 pandemic has underscored both the critical need for accessible palliative care to alleviate serious health-related suffering and the key role of nurses to achieve this goal. 1) Summarize palliative nursing contributions to the expansion of palliative care access; 2) identify emerging nursing roles in alignment with global palliative care recommendations and policy agendas; 3) promote nursing leadership development to enhance universal access to palliative care services. Empirical and policy literature review; best practice models; recommendations to optimize the palliative nursing workforce. Nurses working across settings provide a considerable untapped resource that can be leveraged to advance palliative care access and palliative care program development. Best practice models demonstrate promising approaches and outcomes related to education and training, policy and advocacy, and academic-practice partnerships. An estimated 28 million nurses account for 59% of the international healthcare workforce and deliver up to 90% of primary health services. It has been well-documented that nurses are often the first or only healthcare provider available in many parts of the world. Strategic investments in international and interdisciplinary collaboration, as well as policy changes and the safe expansion of high-quality nursing care, can optimize the efforts of the global nursing workforce to mitigate serious health-related suffering