Participants' perceptions support the coexistence of benefits and burdens of cancer clinical trial participation.

BACKGROUND: To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation. MATERIALS AND METHODS: This sub-group analysis of 21 participants was part of a larger sequential, explanatory mixed methods study. We used Creamer's integrated approach to linking quantitative and qualitative data to assess convergence, with qualitative data explaining quantitative results. Participants were grouped into four categories based on quantitative benefit/burden scores and thematic analysis of their qualitative data was used to describe these categories. RESULTS: Across groups participants varied in descriptions of benefits and burdens of cancer clinical trial participation and reasons for participating. Those reporting high benefit/low burden described "seizing the opportunity to participate;" those reporting low benefit/low burden described "taking responsibility" through trial participation; those reporting low benefit/high burden described how they were "willing to endure," and those with high benefit/high burden emphasized "deciding to act." CONCLUSIONS: Participants' qualitative descriptions of benefits and burdens were more nuanced and dynamic than reflected in their quantitative ratings. Thus, current measures may be missing important concepts, such as logistic challenges of trial participation. Our results have implications for consenting procedures and decisional support guidance offered to patients and their caregivers.

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.

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.

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.

Family and Child Characteristics Associated With Caregiver Challenges for Medically Complex Children.

Children with medical complexity, comprising 3% of US children, face elevated risk of adverse medical, developmental, psychosocial, and family outcomes. The purpose of this study was to examine the association between family and child characteristics and caregiver challenges via a retrospective cohort study using data from 2009/2010 National Survey of Children with Special Health Care Needs. Results revealed that most children with medical complexity have 2 or more conditions; region of residence, insurance, and health conditions significantly predict caregiver challenges; and race, ethnicity, and coinsurance status are associated with medical challenges. Results highlight important evidence on connections between family/child characteristics and caregiver challenges among children with medical complexity.

Parent moral distress in serious pediatric illness: A dimensional analysis.

BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.

Everyday ethical challenges of nurse-physician collaboration.

BACKGROUND: Collaboration between physicians and nurses is key to improving patient care. We know very little about collaboration and interdisciplinary practice in African healthcare settings. RESEARCH QUESTION/AIM: The purpose of this study was to explore the ethical challenges of interdisciplinary collaboration in clinical practice and education in Botswana Participants and research context: This qualitative descriptive study was conducted with 39 participants (20 physicians and 19 nurses) who participated in semi-structured interviews at public hospitals purposely selected to represent the three levels of hospitals in Botswana (referral, district, and primary). ETHICAL CONSIDERATIONS: Following Institutional Review Board Approval at the University of Pennsylvania and the Ministry of Health in Botswana, participants' written informed consent was obtained. FINDINGS: Respondents' ages ranged from 23 to 60 years, and their duration of work experience ranged from 0.5 to 32 years. Major qualitative themes that emerged from the data centered on the nature of the work environment, values regarding nurse-doctor collaboration, the nature of such collaboration, resources available for supporting collaboration and the smooth flow of work, and participants' views about how their work experiences could be improved. DISCUSSION: Participants expressed concerns that their work environment compromised their ability to provide high-quality and safe care to their patients. The physician staffing structure was described as consisting of a few specialists at the top, a vacuum in the middle that should be occupied by senior doctors, and junior doctors at the bottom-and not a sufficient number of nursing staff. CONCLUSION: Collaboration between physicians and nurses is critical to optimizing patients' health outcomes. This is true not only in the United States but also in developing countries, such as Botswana, where health care professionals reported that their ethical challenges arose from resource shortages, differing professional attitudes, and a stressful work environment.

The Evolutionary Nature of Parent-Provider Relationships at Child's End of Life With Cancer.

Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child's end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.

The ethics of concurrent care for children: A social justice perspective.

Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life-including fatigue, pain, dyspnea, and anxiety-with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments. The Concurrent Care Provision of the United States' Affordable Care Act eliminated the need to forgo curative therapies in order to enroll in hospice for children in Medicaid or Children's Health Insurance Program. Concurrent care for children can help mitigate the tension families experience in choosing between essential forms of care, as well as contribute to improved end-of-life outcomes for the child and possibly bereavement outcomes for the family. Understanding concurrent care for children from a social justice perspective has important advocacy and research implications for hospice and palliative care clinicians providing care for children and their families. We apply Powers and Faden's theory of social justice "as the moral foundation of public health and health policy" to the provision of concurrent care to children near end of life and families in the United States. The goals of applying this theory are to explore additional insights and perspectives into concurrent care policy may provide and to assess the usefulness of this theory when applied to end-of-life health policy. We argue that concurrent care policy is socially just since it has potential to promote well-being in vulnerable children and families and can limit the inequity children at end-of-life experience in access to high-quality hospice care.

Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis.

PURPOSES: To explain parental expectations of support from healthcare providers for their parenting roles and goals during a child's life-threatening illness (LTI). DESIGN AND METHODS: Qualitative interpretive study guided by the Family Adjustment and Adaptation Response Model. Thematic analyses were conducted with data from 31 semi-structured interviews of parents of children with LTI using systematic strategies to ensure rigor including audit trails and prolonged engagement. RESULTS: We identified three themes and one meta-theme or overall theme: (1) "Help us survive this," (2) "Let's fight together: please fight with me, not against me, to care for my family," and (3) "Guide me through the darkness: I am suffering." Overall, the parents conveyed that they expect mutuality with the health care providers and system in order to keep Fighting together for my family survival. CONCLUSIONS: In the daily work of caring for their families, parents of children with LTI consider survival on multiple levels. They consider the life, illness, and potential death of one child while considering the on-going survival and sustenance of family relationships. PRACTICE IMPLICATIONS: Parents are distressed and grapple with conflicted feelings about managing competing needs of various family members. Relationships with health care providers can influence parents' management of the situation and be a source of support as their parenting role changes over the illness trajectory, time, and in response to adversity.

Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary.

OBJECTIVE: Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context. METHOD: Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings. RESULTS: Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children. SIGNIFICANCE OF RESULTS: The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.

Tasks and communication as an avenue to enhance parenting of children birth-5 years: an integrative review.

Every day, normative functions of parenting and their significance are under-investigated. An integrative review of tasks and communication involved in parenting young children informed by Horowitz (1995) and Blumer (1969) was conducted.Research articles consistent with inclusion criteria were published from 1995 to 2013 and focused on parenting tasks and communication. Themes consistent with Horowitz and Blumer were identified. Nurses are reminded about the significance of attending to the everyday, normative work of parenting young children, the potential meaning derived from this work, and the importance of assessing parental development as well as the importance of continuing research in this area.

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.

Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care.

CONTEXT: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. OBJECTIVES: Explore and describe the family-level impact of pediatric serious illness. METHODS: We conducted a librarian-assisted scoping review using Arskey and O'Malley's approach. We searched PubMed, Scopus, CINAHL, and EMBASE databases for empirical publications from 2016 to 2021 that focused on families navigating serious pediatric illness published in English. Two reviewers assessed eligibility, with discrepancies resolved by a third. We used Covidence and REDCap for data management and extraction. RESULTS: We screened 10,983 abstracts; 309 abstracts were included in full text screening. The final group of 52 citations was analyzed by the entire team. Most research was conducted in Western Europe and North America. The perspectives of parents of children with cancer were most frequently described; voices of seriously ill youth and their siblings were less often presented. Most of the research was descriptive qualitative, followed by descriptive quantitative. Few studies were mixed methods, inferential, or interpretive. Studies most often described parent, youth, and family experience with illness and less often explored family processes and relationships. Irrespective of the approach (i.e., qualitative, quantitative), few studies focused on families as the analytic unit or used family-level analysis techniques. Study participants were usually from local dominant populations and less often from historically marginalized communities. CONCLUSION: The robust, descriptive, and individual-level evidence describing family impact of serious pediatric illness provides a solid foundation for future research priorities. Stronger integration of family techniques and diverse family voices in pediatric palliative care research can clarify family processes, illuminate structural barriers, and inform interventions that are responsive to family needs. These steps will enhance the education, policy, and clinical provision of PPC to all who would benefit, thereby advancing health equity for children living with serious illness and their families.

Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.

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.

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.