Building Family Interventions for Scalability and Impact.

Family nursing researchers are charged with addressing the conceptual and methodological underpinnings of family research when developing family-focused interventions. Step-by-step guidance is needed that integrates current science of intervention development with family science and helps researchers progress from foundational work to experimental work with policy integration. The purpose of this manuscript is to provide pragmatic, evidence-based guidance for advancing family intervention research from foundational work through efficacy testing. Guidance regarding the development of family interventions is presented using the first three of Sidani's five-stage method: (a) foundational work to understand the problem targeted for change; (b) intervention development and assessment of acceptability and feasibility; and (c) efficacy testing. Each stage of family intervention development is described in terms of process, design considerations, and policy and practice implications. Examples are included to emphasize the family lens. This manuscript provides guidance to family scientists for intervention development and implementation to advance family nursing science and inform policy.

Factors Associated With Transitions to Adult Care Among Adolescents and Young Adults With Medical Complexity.

Introduction: Thanks to advances in healthcare and technology, adolescents with medical complexity (AMC) and life-threatening conditions are living longer lives and may be expected to transition to adult health care. Yet, current systems and policies of transition care may not reflect their needs, those of their family, or the impact of social determinants of health. The goal of this study was to describe the relationship between social determinants of health and high-quality transition care. Methods: Retrospective cohort study of the 2019-2020 National Survey of Children's Health. The main outcome variable was any support for transition to adult health care. Independent variables were based on a social determinants of health framework. Weighted logistic regression was used to evaluate the association between social determinants and any support for transition to adult health care. Results: Final weighted sample included 444,915 AMC. AMC were distributed across income levels, most commonly lived in the South, and in supportive, resilient communities. More than 50% experienced adverse childhood events and less than 50% had adequate insurance. Less than one third received any transition support from providers; those who did reported time alone with the provider or active management. Social determinants related to missed days of school, community support/family context, and poverty were associated with both receipt and absence of transition care. Conclusion: AMC and their families navigate complex environments and associated stressors. Social determinants of health, particularly economic, community/social, and healthcare exert significant and nuanced influence. Such impacts should be incorporated into transition care.

Developing a Family Resource: Considerations for Family Member Research Participation.

When individuals participate in health care research, the choice often affects the entire family. Researchers are responsible for protecting participants and minimizing any burdens the research may place on them. Resources to educate potential study participants about these issues from a family perspective are lacking. A family-focused, evidence-based resource was created for individuals and families to prompt discussion prior to their consenting to enrollment in research. The resource includes key relevant questions to consider related to their study participation and was revised based on input from family nurse scientists and a hospital-based family advisory group. This resource raises awareness of the importance of employing a family lens when designing research and during the recruitment and enrollment of participants. Adopting a family lens in health care research will support the participant's ability to make an informed choice regarding participation and may ultimately enhance the experience of participants and their families and study outcomes.

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

Conceptualizing the Value of Pediatric Concurrent Hospice Care.

Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.

Exploring Dyad-Based Communication During Cancer: A Pilot Study.

BACKGROUND: For patients and intimate partners, the challenge of advanced cancer is often compounded by difficulties in effectively communicating about disease treatment. Relevant evidence-based data are limited, in part because of limitations in understanding the dynamics of dyad-based communication. OBJECTIVES: This pilot study targeted development/feasibility testing of a practical model for assessment of these dynamics in a small group of cancer patients and their intimate partners, with a focus on communication before/after cancer diagnoses, including end-of-life discussions. METHODS: A descriptive phenomenological design was based on the Bodenmann systemic-transactional model of dyadic coping and on semistructured interviews with 7 dyads. Qualitative data analysis used the Colaizzi 7-step method for narrated text interpretation and identification of emergent themes. RESULTS: Patients (median age, 59 years; median intimate partner age, 52 years) had been given a diagnosis of cancer 0 to 6 months before enrollment and were receiving active therapy during participation. Of 534 significant statements analyzed, 2 emergent themes were identified: (1) vulnerable communication during advanced cancer is influenced by preexisting dynamics and complicated by balancing hope/positivity and uncertainty/fear, and (2) communications about end-of-life issues are emotional and influenced by dyad member perceptions about death. A study with a broader racial/demographic representation is planned. CONCLUSION: It is feasible to study dyad communication in the advanced cancer setting, and preliminary data suggest the importance of these dynamics in expression of clinical preferences. IMPLICATIONS FOR PRACTICE: Structured interviews with dyads during advanced cancer care can be used to identify specific challenges and inform improved support approaches.

Perspectives on Access to Novel Therapeutics Through Clinical Trials Among Adolescents and Young Adults with Advanced Cancer: Implications for Patient-Centered Clinical Trials.

Purpose: Adolescents and young adults (AYA) with advanced cancer have unequal access to and enrollment in clinical trials. Many AYA use online platforms to share their treatment experiences. The purpose of this analysis was to explore how AYA discuss clinical trials and their access to novel therapeutics through their blogs. Methods: We studied illness blogs from 22 AYA (ages 16-38 years old) with advanced cancer who specifically discussed experiences enrolling in a clinical trial. Nearly 500 excerpts were abstracted from their blogs, and we used qualitative descriptive methodology and thematic analysis to explore their longitudinal perspectives. Results: We describe three themes: (1) "Blinded", which represents the uncertainty in treatment pathway and underrepresentation of AYA in clinical trials, (2) "Totally healthy except for the damn cancer", which represents the numerous challenges associated with meeting eligibility criteria and lack of available clinical trials, and (3) "Go ahead and send me the bill!", which represents the precarious financial challenges associated with participating with clinical trials (both direct costs and indirect costs associated with travel, time away from work) as well as the costs of novel therapeutics. Conclusions: By studying AYA online narratives, we can outline several gaps in accessing clinical trials and generate future research priorities. AYA with advanced cancer are known to have aggressive trajectories, and there are opportunities to integrate patient-reported outcomes and supportive care frameworks embedded within clinical trial study design.

A National Study of Healthcare Service Patterns at the End of Life Among Children With Cardiac Disease.

BACKGROUND: Heart diseases are one of the leading causes of health-related deaths among children. Concurrent hospice care offers hospice and nonhospice healthcare services simultaneously, but the use of these services by children with cardiac disease has been rarely investigated. OBJECTIVE: The aims of this study were to identify patterns of nonhospice healthcare services used in concurrent hospice care and describe the profile of children with cardiac disease in these clusters. METHODS: This study was a retrospective cohort analysis of Medicaid claims data collected between 2011 and 2013 from 1635 pediatric cardiac patients. The analysis included descriptive statistics and latent class analysis. RESULTS: Children in the sample used more than 314 000 nonhospice healthcare services. The most common services were inpatient hospital procedures, durable medical equipment, and home health. Latent class analysis clustered children into "moderate intensity" (60.0%) and "high intensity" classes (40.0%). Children in "moderate intensity" had dysrhythmias (31.7%), comorbidities (85.0%), mental/behavioral health conditions (55%), and technology dependence (71%). They commonly resided in urban areas (60.1%) in the Northeast (44.4%). The health profile of children in the "high intensity" class included dysrhythmias (39.4%), comorbidities (97.6%), mental/behavioral health conditions (71.5%), and technology dependence (85.8%). These children resided in rural communities (50.7%) in the South (53.1%). CONCLUSIONS: Two patterns of use of nonhospice healthcare services were identified in this study. This information may be used by nurses and other healthcare professionals working in concurrent hospice care to assess the healthcare service needs of children with cardiac conditions at the end of life.

Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials.

Caregivers often face critical decisions, burdens, and perceived benefits related to a loved one participating in cancer clinical trial (CCTs). The purpose of this analysis was to better understand caregivers' perceptions on the benefits and burdens of participation in cancer clinical trials. Using a qualitative descriptive design, interviews with 20 caregivers of patient-participants from a larger parent study were conducted. Three major themes emerged. The benefits of research participation focused on enhancing the potential for saving a loved one's life, improving quality of life, and holding altruistic intentions. The burden of research participation emphasized a loved one's suffering as well as physical, emotional, logistical, and financial burden to caregivers. Caregiver moral distress highlighted distressing ethical encounters, such as making decisions on research participation and navigating suboptimal care. Understanding caregiver perceptions is an important step in designing future CCTs that minimize burdens and maximize patient and caregiver health and family-centered care.

Social Determinants of Comfort: A New Way of Conceptualizing Pediatric End-of-Life Care.

The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social determinants of comfort builds on the well-accepted concept of social determinants of health. Although some guiding palliative care documents begin to address this intersection, deeper understanding and exploration are needed. The goals of this article are to (1) describe and articulate the impact of structural and ecological factors on the comfort children and families can attain near the end of life; (2) describe how to address these factors to support children and families in attaining comfort, and maybe even flourish, at end of life; and (3) provide an agenda for research that addresses how palliative care research can advance health equity and how a focus on equity can advance palliative care science. A variety of inequities reinforce social vulnerability and disadvantage throughout the life span and can have profound effects on children, particularly children with serious illness or at the end of life. Ethical care for these children requires recognition of the social determinants of comfort.

Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives.

Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise.

Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care.

BACKGROUND: Children with advanced cancer have access to comprehensive cancer care and hospice care if they enroll in concurrent hospice care. However, little is known about the patterns of nonhospice healthcare services used by these children. OBJECTIVE: The aim of this study was to examine the patterns of nonhospice healthcare services among children with cancer in concurrent hospice care. METHODS: This study was a retrospective cohort analysis of 2011-2013 Medicaid claims data from 862 pediatric cancer patients. Data were analyzed using descriptive statistics and latent class analysis (LCA). RESULTS: Children used 120 388 healthcare services, including inpatient and outpatient hospital services, laboratories and x-rays, durable medical equipment, medications, and others. These services clustered into 2 classes with moderate-intensity (57.49%) and high-intensity (42.50%) healthcare service use. Children in the high-intensity cluster were more likely to reside in the South with comorbidities, mental/behavioral health conditions, and technology dependence and were less likely to have solid tumors, compared with the moderate-intensity group. CONCLUSIONS: Nonhospice healthcare services clustered together in 2 distinct classes, providing critical insight into the complexity of the healthcare use among children with cancer in concurrent hospice care. IMPLICATIONS FOR PRACTICE: Understanding that pediatric patients in concurrent care may have different healthcare service patterns may assist oncology nurses caring for children with advanced cancer. These findings also have policy implications.

Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study.

BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention. OBJECTIVES: To examine the health care services, unique clusters of health care services, and characteristics of the children in the clusters. METHODS: Multiple data sources were used including national Medicaid claims data. Children under 21years in pediatric concurrent hospice care were included. Using Medicaid categories assigned to claims, health care services were distributed across 20 categories. Latent class analysis was used to identify clusters of health care services. Demographic profiles of the clusters were created. RESULTS: The 6,243 children in the study generated approximately 500,0000 non-hospice, health care service claims while enrolled in hospice care. We identified 3 unique classes of health care services use: low (61.1%), moderate (18.1%), and high (20.8%) intensity. The children in the 3 classes exhibited unique demographic profiles. CONCLUSIONS: Health care services cluster together in unique fashion with distinct patterns among children in concurrent hospice care. The findings suggest that concurrent hospice care is not a 1-size-fit all solution for children. Concurrent hospice care may be customized and require attention to care coordination to ensure high-quality care.

A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care.

Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young adults with cancer, given the intensity of oncology care. Yet, little is known about their needs. We compared young adults with and without cancer in concurrent hospice care. Methods: Retrospective comparative design used data from 2011 to 2013 U.S. Medicaid data files. Decedents were included if they were 20 years of age, enrolled in Medicaid hospice care, and used nonhospice medical services on the same day as hospice care based on their Medicaid claims activity dates. Results: Among 226 decedents, 21% had cancer; more than half were female (60.6%), Caucasian (53.5%), non-Hispanic (77.4%), urban dwelling (58%), and had mental/behavioral disorder (53%). Young adults with cancer were more often non-Caucasian (68.7% vs. 40.4%), technology dependent (47.9% vs. 24.2%), had comorbidities (83.3% vs. 30.3%), and lived in rural (58.3% vs. 37.6%), southern (41.7% vs. 20.8%) areas versus peers without cancer. Those with cancer had significantly fewer live discharges from hospice (5.7 vs. 17.3) and sought treatment for symptoms more often from nonhospice providers (35.4% vs. 14.0%). Conclusions: Young adults in concurrent hospice experience medical complexity, even at end-of-life. Understanding care accessed at 20 years helps providers guide young adults and families considering options in adult-focused care. Clinical and demographic differences among those with and without cancer in concurrent care highlight needs for research exploring racial and geographic equity.

Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States.

Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, legacy interventions offered by children's hospitals have not been recently described. Objective: To describe current legacy services offered by children's hospitals in the United States and compare with our previous results. Design: Descriptive cross-sectional design. Setting/Subjects: Participants included providers (N = 54) from teaching children's hospitals in the United States. Measurements: Electronic REDCap survey. Results: Similar to our prior research, 100% of respondents reported that their hospital offers legacy activities with 98% providing such services as a standard of care. Notable increased numbers of children are participating in legacy interventions compared with the previous study, now with 40% (compared with 9.5% previously) of participants reporting >50 children per year. Patients being offered legacy activities include neonatal intensive care unit (NICU) patients, those with life-threatening traumatic injuries, those on life support for extended periods of time, and those referred to hospice. Although not statistically significant, the percentage of hospitals offering legacy-making to children with cancer, neurodegenerative diseases, and life-threatening illnesses is slightly increased from the prior time point. Conclusions: Children across developmental stages and illness contexts and their families can benefit from both the memories generated through the process of legacy services and the subsequent tangible products. Providers should continue to offer legacy opportunities to seriously ill children and their families across a wide array of settings and illness contexts.

End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis.

ABSTRACT: BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concurrent care for children with neurologic conditions, this investigation aimed to identify patterns of nonhospice, healthcare service needs and to assess characteristics of children within each group. METHODS: A nationally representative sample children with neurological conditions enrolled in concurrent hospice care was used. Latent class analysis and descriptive statistics were calculated to identify patterns of healthcare needs and characteristics of children within the groups. A subgroup analysis of infants was conducted. RESULTS: Among the 1601 children, the most common types of services were inpatient hospitals, durable medical equipment, and home health. Two classes of service needs were identified: moderate intensity (58%) and high intensity (42%). Children in the moderate-intensity group were predominantly between 1 and 5 years old, male, White, and non-Hispanic. The most common neurological condition was central nervous system degeneration. They also had significant comorbidities, mental/behavioral health conditions, and technology dependence. They commonly resided in urban areas in the South. Children in the high-intensity group had a wide range of neurological conditions and high acuity. The subgroup analysis of infants indicated a different neurological profile. CONCLUSIONS: Two distinct classes of nonhospice, healthcare service needs emerged among children with neurological conditions at the end of life. The groups had unique demographic profiles.