Internal consistency reliability of the Revised Illness Perceptions Questionnaire: A systematic review and reliability generalization meta-analysis.

The Revised Illness Perception Questionnaire (IPQ-R) assesses patients' perspectives of their illnesses. Original psychometric testing occurred in limited populations. The purpose of this reliability generalization meta-analysis was to: (1) estimate internal consistency reliability of each IPQ-R subscale, and (2) test moderators of these estimates. Web of Science was searched in July 2022 for articles citing the original IPQ-R paper that reported IPQ-R reliability data. Cronbach's alphas (⍺) were pooled for each IPQ-R subscale using inverse variance weighting and DerSimonian and Laird estimation. Sixty-six studies met criteria. Overall pooled ⍺ estimates were acceptable: 0.71-0.87. Treatment control reliability was reduced among cardiac (⍺ = 0.68), diabetes/kidney disease (⍺ = 0.63), and mixed/other (⍺ = 0.66) samples; cyclical reliability was reduced in cancer (⍺ = 0.65) samples. Age, gender, and race were also significant moderators. Subscale reliability varied based on sample characteristics. Adapting IPQ-R subscales to account for sample variation could improve measurement of illness perception constructs.

JPSM Controversies in Palliative Care: "What is the Most Important, Measurable Goal of Serious Illness Conversations in the Ambulatory Setting?"

There is widespread agreement that clinicians should talk to seriously ill patients and their families about their illnesses. However, advance directives as a quality metric have been called into question because of the lack of data that these conversations lead to goal-concordant care. The controversy has led many to reexamine the purpose of conversations with seriously ill patients and what should be discussed in ambulatory visits.  In this Controversies in Palliative care, experts in palliative care review the literature and suggest both how it influences their clinical practice and what research needs to be done to clarify the controversy. While there is not a single outcome that the experts agree on, they posit a variety of different ways to assess these conversations.

Caregiver Engagement in Serious Illness Communication in a Long-Term Acute Care Hospital Setting.

CONTEXT: Prolonged management of critical illnesses in long-term acute care hospitals (LTACH) makes serious illness communication (SIC), a clinical imperative. SIC in LTACH is challenging as clinicians often lack training and patients are typically unable to participate-making caregivers central. OBJECTIVES: This qualitative descriptive study characterized caregiver engagement in SIC encounters, while considering influencing factors, following the implementation of Ariadne Labs' SIC training at a LTACH in the Northeastern United States. METHODS: Clinicians' documented SIC notes (2019-2020) were analyzed using directed content analysis. Codes were grouped into four categories generated from two factors that influence SIC-evidence of prognostic understanding (yes/no) and documented preferences (yes/no)-and caregiver engagement themes identified within each category. RESULTS: Across 125 patient cases, 251 SIC notes were analyzed. In the presence of prognostic understanding and documented preferences, caregivers acted as upholders of patients' wishes (29%). With prognostic understanding but undocumented preferences, caregivers were postponers of healthcare decision-making (34%). When lacking prognostic understanding but having documented preferences, caregivers tended to be searchers, intent on identifying continued treatment options (13%). With poor prognostic understanding and undocumented preferences, caregivers were strugglers, having difficulty with the clinicians or family unit over healthcare decision-making (21%). CONCLUSION: The findings suggest that two factors-prognostic understanding and documented preferences-are critical factors clinicians can leverage in tailoring SIC to meet caregivers' SIC needs in the LTACH setting. Such strategies shift attention away from SIC content alone toward factors that influence caregivers' ability to meaningfully engage in SIC to advance healthcare decision-making.

Integrating evidence-based communication principles into routine cancer care.

PURPOSE: The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication. METHODS: Composite cases, communication skills blueprint, and visual conceptualization. RESULTS: High-stakes circumstances in each case are described, including end-of-life planning, advanced pediatric illness, strong emotions, and health inequities. Three overarching communication approaches are discussed: (1) content selection and delivery; (2) rapport development; and (3) empathic connection. The key takeaways following each case provide succinct summaries of challenges encountered and approaches used. A communication blueprint from the Memorial Sloan Kettering Cancer Center Communication Skills Training Program and Research Laboratory has been adapted and is comprised of strategies, skills, process tasks, and sample talking points. A visually concise tool - the Communication Blueprint Traffic Circle - illustrates these concepts and demonstrates the iterative, holistic, and agile considerations inherent to effective communication. CONCLUSION: Evidence-based communication is foundational to person-centeredness, associated with improved clinician and patient/caregiver outcomes, and can be integrated throughout routine oncology care. When used by clinicians, evidence-based communication can improve patient and caregiver experiences and assist in ensuring goal-concordant cancer care delivery.

Don't Throw the Baby Out With the Bathwater: Meta-Analysis of Advance Care Planning and End-of-life Cancer Care.

CONTEXT: There is ongoing discourse about the impact of advance care planning (ACP) on end-of-life (EOL) care. No meta-analysis exists to clarify ACP's impact on patients with cancer. OBJECTIVE: To investigate the association between, and moderators of, ACP and aggressive vs. comfort-focused EOL care outcomes among patients with cancer. METHODS: Five databases were searched for peer-reviewed observational/experimental ACP-specific studies that were published between 1990-2022 that focused on samples of patients with cancer. Odds ratios were pooled to estimate overall effects using inverse variance weighting. RESULTS: Of 8,673 articles, 21 met criteria, representing 33,541 participants and 68 effect sizes (54 aggressive, 14 comfort-focused). ACP was associated with significantly lower odds of chemotherapy, intensive care, hospital admissions, hospice use fewer than seven days, hospital death, and aggressive care composite measures. ACP was associated with 1.51 times greater odds of do-not-resuscitate orders. Other outcomes-cardiopulmonary resuscitation, emergency department admissions, mechanical ventilation, and hospice use-were not impacted. Tests of moderation revealed that the communication components of ACP produced greater reductions in the odds of hospital admissions compared to other components of ACP (e.g., documents); and, observational studies, not experimental, produced greater odds of hospice use. CONCLUSION: This meta-analysis demonstrated mixed evidence of the association between ACP and EOL cancer care, where tests of moderation suggested that the communication components of ACP carry more weight in influencing outcomes. Further disease-specific efforts to clarify models and components of ACP that work and matter to patients and caregivers will advance the field.

Palliative care delivery changes during COVID-19 and enduring implications in oncology nursing: a rapid review.

PURPOSE OF REVIEW: A rapid review was conducted to synthesize evidence of palliative care delivery changes during the COVID-19 pandemic. Changes were synthesized according to the eight domains of high-quality palliative care and enduring implications for oncology nurses beyond the pandemic discussed. RECENT FINDINGS: The most significant changes occurred in the structure and processes of palliative care (Domain 1), where increased utilization of telehealth was critical in circumventing barriers imposed by COVID-19 mitigation. The suboptimal availability of community-based psychosocial supports for patients and caregivers and inadequate health system-based psychosocial supports for healthcare providers were highlighted (Domains 3-5). The pandemic also ushered in an increased emphasis on the need for advance care planning (ACP), where integrating its delivery earlier in the outpatient setting and shifting policy to promote subsequent virtual documentation (Domain 8) were essential to ensure care preferences were clarified and accessible before health crises occurred. SUMMARY: Continuing to embrace and sustain systems-level changes with respect to telehealth, psychosocial supports, and ACP are critical to bridging gaps in palliative care delivery underscored by the pandemic. Oncology nurses are well positioned to fill these gaps in care beyond the pandemic by providing evidence-based, palliative care throughout the cancer continuum.

Content Validity Assessment of the Revised Illness Perception Questionnaire in CKD Using Qualitative Methods.

BACKGROUND: The Revised Illness Perception Questionnaire (IPQ-R) measures individuals' unique perceptions of their illness. While psychometric properties of the IPQ-R have been demonstrated in many disease populations, its content validity has not been extensively studied in non-dialysis chronic kidney disease (CKD). Unique features of CKD (e.g., few symptoms in early stages) may impact the measurement of illness perceptions. The purpose of this study was to explore the IPQ-R content validity in a sample of CKD patients. METHODS: Thirty-one participants completed the IPQ-R and were interviewed regarding their subscale scores (timeline, consequences, personal control, treatment control, coherence, cyclical, and emotions). Participants' agreement with their scores was tallied and assessed qualitatively for themes related to the content validity of the measure. RESULTS: Individual participant agreement with their subscale scores averaged 79% (range: 29-100%). Subscale agreement varied: timeline (100%), consequences, coherence, and emotion (83% each), cyclical (75%), personal control (65%), and treatment control (64%). A qualitative exploration of disagreement responses revealed concerns with the relevance and comprehensibility of personal control and treatment control. CONCLUSIONS: Some IPQ-R subscales may pose content validity concerns in the non-dialysis CKD population. Item modification for comprehensibility (personal control) and relevance (treatment control) should be considered. Future studies should explore the impact of a patient's symptom experience on IPQ-R validity, especially in populations like CKD with a higher proportion of asymptomatic patients.

Caregiver Engagement Enhances Outcomes Among Randomized Control Trials of Transitional Care Interventions: A Systematic Review and Meta-analysis.

BACKGROUND: Fluctuations in health among chronically ill adults result in frequent health care transitions. Some interventions to improve patient outcomes after hospitalization include caregiver engagement as a core component, yet there is unclear evidence of the effects of this component on outcomes. OBJECTIVE: The objective of this study was to synthesize evidence regarding the attention given to caregiver engagement in randomized control trials of transitional care interventions (TCIs), estimate the overall intervention effects, and assess caregiver engagement as a moderator of intervention effects. METHODS: Three databases were systematically searched for randomized control trials of TCIs targeting adults living with physical or emotional chronic diseases. For the meta-analysis, overall effects were computed using the relative risk (RR) effect size and inverse variance weighting. RESULTS: Fifty-four studies met criteria, representing 31,291 participants and 66 rehospitalizations effect sizes. Half (51%) the interventions lacked focus on caregiver engagement. The overall effect of TCIs on all-cause rehospitalizations was nonsignificant at 1 month (P=0.107, k=29), but significant at ≥2 months [RR=0.89; 95% confidence interval (CI): 0.82, 0.97; P=0.007, k=27]. Caregiver engagement moderated intervention effects (P=0.05), where interventions with caregiver engagement reduced rehospitalizations (RR=0.83; 95% CI: 0.75, 0.92; P=0.001), and those without, did not (RR=0.97; 95% CI: 0.87, 1.08; P=0.550). Interventions with and without caregiver engagement did not differ in the average number of components utilized, however, interventions with caregiver engagement more commonly employed baseline needs assessments (P=0.032), discharge planning (P=0.006), and service coordination (P=0.035). DISCUSSION: Future TCIs must consistently incorporate the active participation of caregivers in design, delivery, and evaluation.

Use of complementary and integrative health in cancer pain management among patients undergoing cancer treatments: a qualitative descriptive study.

BACKGROUND: Pain is a common symptom in patients undergoing cancer treatment. Despite recommendations for the stronger integration of complementary and integrative health (CIH) in cancer pain management, little is known about the individual experience of using this approach for cancer pain, particularly in certain populations such as African Americans. OBJECTIVE: This study aimed to describe the experiences of using CIH for pain in African American and White patients with cancer undergoing cancer treatments. METHODS: A secondary analysis of qualitative descriptive data from a subsample of patients with cancer in a parent study of their illness concerns was employed. Atlas.ti 8.0 was used for data management and qualitative analysis. Counts of participant-endorsed themes were tabulated to discern differences in themes by group. RESULTS: Of 32 participants (16 African American, 16 White), 22 reported CIH usage for cancer pain management, with equal distribution between groups (11 each). Three themes emerged: Approach to, Reasons for, and Barriers to CIH Use. Psychological approaches were most common (n = 15). Nutritional, physical, and combination approaches were less common and more often employed by White participants. Reasons for CIH use were to reduce opioid consumption or for an opioid adjuvant. Personal limitations and access issues contributed to Barriers to CIH use. CONCLUSIONS: Both African American and White patients used CIH for pain management while undergoing cancer treatments. However, some preferential differences in CIH approaches by race surfaced. Further research into these differences may uncover new ways of addressing disparities in cancer pain management with CIH.

"It's Rougher on Me Than It Is on Him": Family Caregiver-Generated and Prioritized Illness Concerns While Patients Undergo Cancer Treatments.

PURPOSE: Research eliciting patients' illness concerns has typically focused later in the cancer continuum, rather than during cancer treatments. Family caregiver concerns are overlooked during this time. Less is known about how patients and caregivers prioritize concerns during cancer treatments, which holds potential for improving supportive oncology care (ie, primary palliative care). The purpose of this study was to elicit and compare which domains of supportive oncology are of highest importance to patients and caregivers during cancer treatments. METHODS: Freelisting, a cognitive anthropology method, was used to elicit concerns in order of importance. Freelist data were analyzed using Smith's salience index. Qualitative interviews were conducted with a caregiver subsample to add explanatory insights. RESULTS: In descending order, pain, death, fear, family, and awful were salient Freelist items for patients (n = 65), whereas sadness, time-consuming, support, anger, tired, death, and frustration were salient for caregivers (n = 24). When integrated with supportive oncology domains, patients' concerns reflected a prioritization of the physical (pain) and emotional (death, fear, and awful) domains, with less emphasis on social (family) aspects. Caregivers' prioritized the emotional (sadness, anger, death, and frustration) and social (time-consuming and support) domains, with less emphasis on the physical (tired) aspects. CONCLUSION: Our findings suggest that enhancing primary palliative care delivery by oncology teams requires systems thinking to support both the patient and caregiver as the primary unit of care. Primary palliative care may be improved by prioritizing interventions that address physical concerns among patients as well as key social concerns among caregivers to support the complex caregiving role while patients undergo cancer treatments.

Impact of Cannabis Use on Least Pain Scores Among African American and White Patients with Cancer Pain: A Moderation Analysis.

INTRODUCTION: Based on many published reports, African American patients with cancer experience higher pain severity scores and lower pain relief than White patients. This disparity results from undertreatment of pain and is compounded by low adherence to prescribed non-opioid and opioid analgesics among African American patients with cancer. While nearly one in four patients use cannabis to manage cancer-related symptoms, less is known about how cannabis use influences pain relief in this patient population. METHODS: This study is based on preliminary data from an ongoing study of longitudinal outcomes of opioid therapy among African American and White patients with cancer. Linear mixed-effects models were utilized to assess the interaction of race and cannabis use on pain relief using "least pain" item scores from the Brief Pain Inventory (BPI) averaged across three time points. Models were adjusted for sociodemographic and clinical variables. RESULTS: This analysis included 136 patients (49 African American, 87 White). Overall, 30.1% of the sample reported cannabis use for cancer pain. The mean "least pain" score on BPI was 3.3 (SD=2.42) on a scale of 0-10. African American patients had a mean "least pain" score 1.32±0.48 units higher (indicating lower pain relief) than White patients (p=0.006). Cannabis use did not have a significant main effect (p=0.28). However, cannabis use was a significant moderator of the relationship between race and "least pain" (p=0.03). In the absence of cannabis use, African Americans reported higher "least pain" scores compared to Whites (mean difference=1.631±0.5, p=0.001). However, this disparity was no longer observed in African American patients reporting cannabis use (mean "least pain" difference=0.587±0.59, p=0.32). CONCLUSION: These findings point to the possible role of cannabis in cancer pain management and its potential to reduce racial disparities. These findings are preliminary and further research into the role of cannabis in cancer pain outcomes is needed.

Using the Nurse Coaching Process to Support Bereaved Staff During the COVID-19 Crisis.

Nurses are confronting a number of negative mental health consequences owing to high burdens of grief during COVID-19. Despite increased vaccination efforts and lower hospitalization and mortality rates, the long-term effects of mass bereavement are certain to impact nurses for years to come. The nurse coaching process is an evidence-based strategy that nurse leaders can use to assist staff in mitigating negative mental health outcomes associated with bereavement. The End-of-Life Nursing Education Consortium brought together a team of palliative nursing experts early in the pandemic to create resources to support nurses across settings and promote nurse well-being. This article shares a timely resource for health systems and nursing administration that leverages the nurse coaching process to support bereaved staff in a safe and therapeutic environment.

"I'm Dealing With That": Illness Concerns of African American and White Cancer Patients While Undergoing Active Cancer Treatments.

BACKGROUND: National oncology guidelines recommend early integration of palliative care for patients with cancer. However, drivers for this integration remain understudied. Understanding illness concerns at the time of cancer treatment may help facilitate integration earlier in the cancer illness trajectory. OBJECTIVE: To describe cancer patients' concerns while undergoing cancer treatment, and determine if concerns differ among African Americans and Whites. METHODS: A 1-time, semi-structured qualitative interview was conducted with a purposive subsample of cancer patients participating in a larger study of illness concerns. Eligible patients were undergoing cancer treatments and had self-reported moderate-to-severe pain in the last week. Analysis encompassed a qualitative descriptive approach with inductive thematic analysis. RESULTS: Participants (16 African American, 16 White) had a median age of 53 and were predominantly females (72%) with stage III/IV cancer (53%). Illness concerns were largely consistent across participants and converged on 3 themes: symptom experience (pain, options to manage pain), cancer care delivery (communication, care coordination and care transitions), and practical concerns (access to community and health system resources, financial toxicity). CONCLUSIONS: The findings extend the scope of factors that could be utilized to integrate palliative care earlier in the cancer illness trajectory, moving beyond the symptoms- and prognosis-based triggers that typify current referrals to also consider diverse logistical concerns. Using this larger set of concerns aids anticipatory risk mitigation and planning (e.g. care transitions, financial toxicity), helps patients receive a larger complement of support services, and builds cancer patients' capacity toward a more patient-centered treatment and care experience.

Health Correlates of Abuse History and Moderating Effect of Parenting Stress for Mothers with Mental Disorders.

Parenting stress is common and may lead to worsening health, particularly in the context of other risk factors such as mental disorders or a history of abuse. This study investigated how parenting-related stress impacts the effect of abuse experiences on health among mothers with mental health disorders. Survey data was analyzed from 172 predominantly Hispanic mothers receiving outpatient behavioral health services. Most (80.2%) mothers had experienced abuse. Those reporting childhood abuse had 3.82 greater odds of experiencing abuse in adulthood. Findings demonstrated worse health outcomes among those experiencing abuse in both childhood and adulthood and those with a greater number of abuse experiences. Caregiving load intensified the relationship between abuse and anxiety and sleep disturbance. Parenting self-agency intensified the relationship between abuse and cigarette use. These findings have important implications for mental health nursing practice by identifying parenting-stress as an important target for interventions to improve health among women with histories of abuse and mental health disorders.

End-of-life decision making in the context of chronic life-limiting disease: a concept analysis and conceptual model.

BACKGROUND: Conceptual ambiguities prevent advancements in end-of-life decision making in clinical practice and research. PURPOSE: To clarify the components of and stakeholders (patients, caregivers, healthcare providers) involved in end-of-life decision making in the context of chronic life-limiting disease and develop a conceptual model. METHOD: Walker and Avant's approach to concept analysis. FINDINGS: End-of-life decision making is a process, not a discrete event, that begins with preparation, including decision maker designation and iterative stakeholder communication throughout the chronic illness (antecedents). These processes inform end-of-life decisions during terminal illness, involving: 1) serial choices 2) weighed in terms of potential outcomes 3) through patient and caregiver collaboration (attributes). Components impact patients' death, caregivers' bereavement, and healthcare systems' outcomes (consequences). DISCUSSION: Findings provide a foundation for improved inquiry into and measurement of the end-of-life decision making process, accounting for the dose, content, and quality the antecedent and attribute factors that collectively contribute to outcomes.

The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer.

CONTEXT: Advance care planning (ACP) is used to prepare patients and caregivers for future "in the moment" decisions at the end-of-life. Patients with cancer generally do not engage in all 3 components of ACP (documented living will, health-care surrogate, end-of-life discussions); however, little is known about the impact of these varying levels of ACP engagement on caregivers postdeath. OBJECTIVE: To examine the relationship between varying levels of ACP engagement and caregivers' perceptions of cancer decedents' end-of-life experiences. METHODS: A secondary analysis of the 2002 to 2014 waves of the Health and Retirement Study data using structural equation modeling was conducted. Five levels of ACP engagement were defined: full (discussions/documents), augmented discussions, documents only, discussions only, and no engagement. RESULTS: Among the 2172 cancer death cases, the analyzed sample included 983 cases where end-of-life decisions occurred. Compared to no ACP, all levels of ACP were significantly associated with caregivers' positive perceptions of cancer decedents' end-of-life experiences (P ≤ .001), controlling for sex, race, and Hispanic ethnicity (R 2 = .21). However, the relative impact of each level of ACP engagement was not equal; full engagement (ß = .61) was associated with a greater impact compared to each of the partial levels of engagement (augmented discussions [ß = .33], documents only [ß = .17], discussions only [ß = .17]). CONCLUSION: Partial ACP engagement, not just nonengagement, serves as an important clinically modifiable target to improve the end-of-life care experience among patients with cancer and the perceptions of those experiences among bereaved caregivers.

A Systematic Review and Gap Analysis of Advance Care Planning Intervention Components and Outcomes Among Cancer Patients Using the Transtheoretical Model of Health Behavior Change.

CONTEXT: Despite the benefits of advance care planning (ACP), cancer patients rarely engage in ACP. ACP is a process that parallels health behavior change. This makes the Transtheoretical Model of Health Behavior Change (TTM) an important framework for understanding how to increase ACP among cancer patients. OBJECTIVES: This study aimed to systematically review ACP interventions for cancer patients by 1) categorizing ACP intervention components according to the stages and processes of behavior change in the TTM, 2) conducting a gap analysis among the categorized components, and 3) identifying patterns between the categorized intervention components and the intervention outcomes. METHODS: PubMed, CINAHL Plus, MEDLINE, Cochrane Library, and Web of Science databases were searched for articles related to ACP and cancer. ACP intervention components were abstracted, assessed for theoretical relevance, organized according to the stages and process of change in the TTM, and then synthesized. RESULTS: The search produced 4604 articles, with 25 meeting criteria for review. Most intervention components targeted the precontemplation and contemplation stages of change, with fewer targeting preparation, action, or maintenance. Multiple processes of change were not addressed. Interventions that resulted in ACP engagement tended to take an interdisciplinary approach to implementation and consisted of multiple consultations staged over time. CONCLUSION: ACP likely requires "high touch" interventions to induce behavior change. ACP interventions that are stage-matched, use diverse mechanisms to engage ACP (i.e., processes of change), address ACP as a process, and monitor engagement across the illness trajectory are needed for cancers patients and their caregivers.

Evaluation of a Novel Disaster Nursing Education Method.

OBJECTIVE: A common method of disaster training is needed to improve disaster nursing education and facilitate better communication among interprofessional disaster responders. To inform the development of disaster nursing curricula, a novel disaster nursing education method consistent with Homeland Security Exercise and Evaluation Program (HSEEP) and the International Council of Nurses (ICN) framework was developed to improve disaster nursing competencies in a baccalaureate nursing program. METHODS: In total, 89 undergraduate nursing students participated. Perceived disaster nursing knowledge, confidence, and training/response were assessed with 14 items before and after the education. RESULTS: Exploratory factor analysis showed 3 factors, knowledge, confidence, and training/response, explained 71% of variation in items. Nursing students showed large improvements in perceived disaster nursing knowledge (t=11.95, P<0.001, Cohen's d=1.76), moderate increases in perceived confidence (t=4.54, P<0.001, d=0.67), and no change in disaster training and response (t=0.94, P=0.351, d=0.13). CONCLUSIONS: Results show preliminary evidence supporting the effectiveness of disaster nursing education informed by HSEEP. This training has the potential to fill current practice gaps in disaster nursing knowledge and build confidence to use those skills in practice. (Disaster Med Public Health Preparedness. 2018;12:703-710).