Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. 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's 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.

Diverse demands and resources among racially/ethnically diverse caregivers.

OBJECTIVES: The family caregiver population in the US is growing in conjunction with greater numbers of older adults with serious illness and complex care needs, and is becoming increasingly diverse. This study described and compared resources, demands, and health outcomes among diverse family caregivers by race/ethnicity. DESIGN: This study was a cross-sectional secondary analysis of nationally representative data collected for Black/African-American, Asian American & Pacific Islander, Latino/Hispanic and non-Latino/Hispanic white caregivers (n = 2,010) in the Home Alone Revisited Study. We described available resources (e.g. income, paid help, social support) and demands (e.g. medical/nursing task performance) by racial/ethnic group. Using survey-weighted logistic regression, we examined relationships of resources and demands with caregiver outcomes (i.e. heath status; strain; depressive symptoms) by race-ethnicity controlling for socio-demographic variables. RESULTS: Distribution of resources and demands was similar by race/ethnicity, except for higher income for non-Latino/Hispanic white caregivers. Nearly half assisted with personal care (47.5%) or medical/nursing tasks (49.7%). Higher social support and satisfaction with social relationships was associated with positive health outcomes regardless of race/ethnicity, while income was consistently associated with positive health outcomes only for non-Latino/Hispanic white caregivers. Medical/nursing task performance was significantly associated with negative health outcomes for Asian American & Pacific Islanders in multivariable models. DISCUSSION: Many caregiving demands and tasks are similar by race/ethnicity and represent considerable investment of time, energy and care. Differences in the effects of resources and demands by race/ethnicity should be explored in future research as they may have implications for assessment and planning of culturally and linguistically appropriate interventions.

Caring for a Person Living with Pain.

Nurses play a key role in supporting family caregivers.

Better together: Coalitions committed to advancing health equity.

The Future of Nursing 2020-2030 report identifies coalitions as a driving force for advancing health equity. Five coalitions provided insight into their accomplishments, lessons learned, and role in advancing health equity. The exemplar coalitions included Latinx Advocacy Team and Interdisciplinary Network for COVID-19, Black Coalition Against COVID, Camden Coalition, National Coalition of Ethnic Minority Nurse Associations, and The Future of Nursing: Campaign for Action. While all exemplar coalitions, credited relationship building and partnerships to their success, they used unique strategies for striving to meet their populations' needs, whether the needs arose from COVID-19, racial and/or ethnic disparities, socioeconomic disparities, or other barriers to health. Research and policy implications for coalitions are discussed. Nurses play a critical role in every highlighted coalition and in the national effort to make health and health care more equitable.

When Family Caregivers Meet Health Care Institutions.

Nurses have the opportunity to make a difference for caregivers.

Stakeholder Voices: Interpreting Caregiving Research and Designing Next Steps.

Stakeholder engagement can enhance interpretation of research findings and promote meaningful dissemination into policy and practice. Several organizations dedicated to understanding the needs of diverse older adults and family caregivers and advancing practice and policy to improve their health came together in a series of discussions. More than 120 participants, including family/friend caregivers and their advocates and leaders and researchers from public and private organizations, generated an action agenda for those engaged with family caregivers in service delivery, research, and policy across three virtual sessions. Although there are common experiences and demands for caregivers, the meanings of these experiences are shaped by a cultural context, and the intersectionality of caregiver experiences by age, race/ethnicity, gender identity, sexual orientation, immigrant status, and other factors bring into focus the diversity of life and caregiving experience. This heterogeneity of experience crystalizes the importance of assuring the caregiver is at the center, and that design for programs, research, and policy recognize the importance of understanding caregivers and their unique needs before pre-supposing solutions. [Journal of Gerontological Nursing, 47(9), 5-12.].

COVID-19 Pandemic Spurs Policy Changes Benefiting Older Adults.

This article reviews recent federal and state policy changes in response to the COVID-19 pandemic that affect health care and quality of life for older adults. Specific regulations and guidelines issued at the state and federal level have increased access and provided additional funding for essential services and supports. Many of these changes are temporary and have the potential to improve care beyond the immediate crisis. This period of greater flexibility offers the opportunity to accrue evidence on quality and access to influence sustained change. [Journal of Gerontological Nursing, 46(6), 19-23.].

Family Caregivers Are Members of Our Team.

Nurses play a critical role in providing support.

Nurses Supporting Family Caregivers.

Caregivers need more guidance from nurses to perform increasingly complex tasks.

Feasibility of a Family-Centered Hospital Intervention.

Approximately one half of the 40 million family caregivers in the United States are regularly performing medical/nursing tasks, with very little training from clinicians. The goal of the current project was to encourage health care and social service professionals to proactively engage family caregivers as partners in care. The phases of the Professional Partners Supporting Family Caregivers project and results of an intervention are presented. Five hospitals were selected to develop a family-centered intervention. Patients' and family caregivers' hospital experience was examined, as well as nurses' perception of their work environment specific to care of older adults and caregivers. The sample included five intervention sites in which patients, family caregivers, and nurses provided baseline post-intervention data. The four comparison sites included post-intervention data from patients, family caregivers, and nurses. The family-centered intervention shows promise in improving patients' hospital experience and nurses' perception of caring for older adults and their families. [Journal of Gerontological Nursing, 43(6), 9-16.].

Nurses Supporting Family Caregivers.

Caregivers need more guidance from nurses to perform increasingly complex tasks.

Nurse Delegation in Home Care: Research Guiding Policy Change.

The current study evaluated nurse delegation in home care, a pilot program introduced in 2007 in New Jersey to promote home care options for consumers needing assistance with medical/nursing tasks. Findings on readiness for the program, barriers and facilitating factors, experience with the program, and recommendations are summarized and presented. Methods included surveys and interviews with participants in nurse delegation, observations of planning and implementation meetings, and review meeting minutes. Major findings were no negative outcomes for consumers, improvements in quality of life and quality of care for consumers, high readiness and increasing satisfaction with experience in delegation, perception of nurse delegation in home care as a valued option, and the challenges of ensuring adequate staffing. Subsequent changes in regulation in New Jersey are underway, translating this research into policy. [Journal of Gerontological Nursing, 42(9), 7-15.].

Medication management roles in assisted living.

Residents in assisted living (AL) frequently need assistance with medication management. Rooted in a social model, AL serves people facing increasing health management challenges as they "age in place." This study explored roles in AL medication management and satisfaction with unlicensed assistive personnel (UAP) as medication aides, a cost-effective staffing approach that is used frequently. The sample included 112 participants representing all parties involved in medication administration (residents, medication aides, administrators, RNs and licensed practical nurses, pharmacists, and primary care providers) in 15 AL settings in four states. Results include description of medication management roles; empirical validation of existing AL nursing professional standards; and satisfaction with the role of UAP as medication aide from all perspectives. Clinical implications include creating a supportive environment for medication aides (i.e., UAPs); the importance of the RN role as facilitator of AL medication management; and the need for collaboration and interprofessional team development across disparate settings.