Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer.

BACKGROUND: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations determine values/preferences that guide shared decision-making and goals of treatment, including end-of-life care when cancer progresses. Initiating PCEOL conversations is challenging for clinicians. OBJECTIVE: This study describes the development and validation of an instrument that measures AYA readiness to engage in PCEOL clinical conversations. METHODS: A Ready-to-Talk Measure (R-T-M) was developed, guided by the revised conceptual model of readiness across 3 domains (awareness, acceptance, and willingness). Content experts evaluated validity, and 13 AYAs with advanced cancer participated in cognitive interviews. Acceptability (item applicability, clarity, interpretation, sensitivity, missingness) and experiences (benefit, burden) were analyzed. RESULTS: The scale content validity index was ≥0.90 for each domain. Forty-two of the 55 R-T-M items were acceptable without any change. Three items were deleted. Ten items were modified, and 3 were added. Adolescents and young adults wanted more items about friends/siblings and about AYA unique qualities for clinicians to know them better. Adolescents and young adults acknowledged benefit through talking about difficult, relevant topics. CONCLUSION: Ready-to-Talk Measure validity was strengthened by deleting or modifying unclear or misinterpreted items and by adding items. Next steps include psychometric analysis to determine reliability/dimensionality and stakeholder input to make the R-T-M a clinically useful tool. IMPLICATIONS FOR PRACTICE: Ready-to-Talk Measure assessment of readiness to engage in PCEOL conversations while identifying unique preferences of AYAs holds promise for facilitating ongoing discussions.

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.

Five Dimensions of Needs for Help: The Efficacy of a Technology-Based Intervention Among Asian American Breast Cancer Survivors.

Cancer survivors including Asian American breast cancer survivors have reported their high needs for help during their survivorship process. With the COVID-19 pandemic, the necessity of technology-based programs to address their needs for help without face-to-face interactions has been highlighted. The purpose of this randomized intervention study was to determine the efficacy of a technology-based program in reducing various types of needs for help among this specific population. This was a randomized clinical trial with repeated measures. A total of 199 participants were included in the data analysis. The recruitment settings included both online and offline communities/groups for Asian Americans. The needs for help were assessed using the Support Care Needs Survey-34 Short Form (SCNS) subscales measuring psychological, information, physical, support, and communication needs. Data analysis was conducted through an intent-to-treat approach. In the mixed effect models, psychological needs, information needs, physical needs, and communication needs decreased over time (P < .001). However, there were no significant group * time effects. Social support significantly mediated the effects of a technology-based intervention on psychological, information, and support needs at the pre-test and the post-1 month. This study supported significant decreases in the needs for help of Asian American breast cancer survivors by a technology-based intervention. Further studies are needed with other racial/ethnic groups of cancer survivors to confirm the efficacy of a technology-based intervention in reducing cancer survivors' needs for help during their survivorship process.

An Updated Equitable Model of Readiness for Transition to Adult Care: Content Validation in Young People With Sickle Cell Disease.

Importance: Despite elevated health risks during young adulthood, many adolescents and young adults with serious health care needs face barriers during the transfer to an adult specialty practitioner, and health disparities may occur during the transition. Objective: To validate the content of an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) in a group of adolescents and young adults with sickle cell disease (SCD) and their supports. Design, Setting, and Participants: Health equity framework components were reviewed. Systems of power (eg, institutional and practitioner bias) and environments or networks (eg, peer or school support) were added as SMART-E preexisting factors, and health literacy was included within readiness factors. Adolescents and young adults aged 16 to 29 years with SCD, caregivers, and practitioners participated in this convergent, mixed-methods study within Children's Hospital of Philadelphia between January and August 2022. Main Outcomes and Measures: Content validity was assessed through nominations of top 3 most important transition barriers prior to interviews and focus groups, ratings on importance of SMART-E factors (0-4 scale; ratings >2 support validity) after interviews and focus groups, nominations of 3 most important factors for transition and for health equity, and qualitative content analysis of interview transcripts. Results: The study enrolled 10 pediatric adolescents and young adults (mean [SD] age, 18.6 [2.9] years; 4 female and 6 male), 10 transferred adolescents and young adults (mean [SD] age, 22.9 [2.1] years; 8 female and 2 male), 9 caregivers (mean [SD] age, 49.8 [8.7] years; 5 female and 4 male), and 9 practitioners (mean [SD] age, 45.6 [10.5] years; 8 female and 1 male). Quantitative ratings supported the content validity of SMART-E and met established criteria for validity. Systems of power was the most endorsed transition barrier (14 of 38 participants) reported prior to interviews and focus groups. After the interview, participants endorsed all SMART-E factors as important for transition, with new factors systems of power and environments and networks rated at a mean (SD) 2.8 (1.23) and 3.1 (0.90), respectively, on a 0 to 4 scale of importance. The most important factors for transition and equity varied by participant group, with all factors being endorsed, supporting the comprehensiveness of SMART-E. Qualitative data corroborated quantitative findings, further supporting validity, and minor modifications were made to definitions. Conclusions and Relevance: SMART-E obtained initial content validation with inclusion of health equity factors for adolescents and young adults with SCD, caregivers, and practitioners. The model should be evaluated in other populations of adolescents and young adults with chronic disease.

A Comparison of Family Management Between Families of Children With Autism Spectrum Disorder and Families of Children With Down Syndrome.

INTRODUCTION: This cross-sectional study aimed to (1) compare family management between families of children with autism spectrum disorder (ASD) or Down syndrome and (2) evaluate the contribution of the child (ASD behaviors, feeding difficulties, sleep disturbances), caregiver (mental health) and family (social support) factors to the caregiver's perceived condition management ability and effort. METHOD: Eighty-five caregivers (56 ASD, 29 Down syndrome) completed quantitative instruments online. Data analysis included independent samples t-tests and multiple linear regression. RESULTS: There were no significant differences in the dimensions of family management between groups. More ASD behaviors were associated with lower condition management ability and higher condition management effort. Lower perceived social support and higher caregiver age were associated with lower condition management ability. DISCUSSION: Integrating care into family life may be more challenging when the child has more social differences and behavioral rigidity. Nursing care should include an assessment of family social support.

Caregiver condition management and family functioning after pediatric cancer treatment: Moderation by race and ethnicity.

OBJECTIVE: End of pediatric cancer treatment requires family adjustment. Caregivers who struggle to incorporate the child's condition into family life have poorer family outcomes. To better understand factors that contribute to successful transition off active childhood cancer treatment, we sought to examine caregiver perceived management ability of the youth's condition and family functioning as predictors of caregiver distress, evaluate family functioning as a mediator between perceived ability and distress, and explore race and ethnicity as a moderator between perceived ability and family functioning. METHODS: Caregivers (N = 141) completed measures assessing family management (condition management ability; CMA), family functioning, and distress as part of a clinical education and screening program within 1 year of the end of treatment. Bias-corrected bootstrap regression analyses examined mediation and moderated mediation models with patient race and ethnicity as the moderator. RESULTS: The overall mediation model was statistically significant for CMA→family functioning→distress. Race and ethnicity moderated the relationship between CMA and family functioning, but the full model was not significant. CMA was related to family functioning for caregivers of non-Hispanic white youth, but not caregivers of Hispanic youth. Family functioning was related to distress for all caregivers. CONCLUSIONS: Family functioning serves as an initial intervention target to reduce caregiver distress. Caregiver perceived management ability of their child's condition is a meaningful predictor of family functioning and distress for caregivers of non-Hispanic white youth, yet CMA may be limited as a screener of family management patterns for diverse populations, and other family management dimension may be more applicable.

Pediatric psychosocial preventative health model: Achieving equitable psychosocial care for children and families.

OBJECTIVE: The Pediatric Psychosocial Preventative Health Model (PPPHM) is a three-tier model of family psychosocial risk used to guide intervention approaches in pediatric healthcare settings. Screening all families to determine levels of risk supports equitable care. We review evidence from papers using the Psychosocial Assessment Tool (PAT), a brief caregiver-report measure of family psychosocial risk with scores that map to the PPPHM, to characterize the distribution of risk. We predict that across study samples the distribution of risk on the PPPHM will be approximately 60% universal (low), 30% targeted (moderate), and 10% clinical (high). METHOD: We conducted a scoping review searching PubMed, MEDLINE, Emcare, and PsycInfo for articles that reported PPPHM data using the PAT. RESULTS: Forty-seven samples from 43 papers were included, reporting on patients with 17 conditions. PPPHM scores were highly consistent with median percentages of 55% universal, 34% targeted, and 11% clinical. There is evidence of higher levels of risk for samples using the Spanish version of the PAT, from weight management programs and with families who have children with autism spectrum disorder. CONCLUSIONS: The data demonstrate consistent patterns of psychosocial risk distributions on the PPPHM and support implementation of universal family psychosocial risk screening, followed by delivery of personalized care based on level of risk. Screening all families promotes health equity in pediatric health care settings by normalizing the importance of understanding psychosocial risk and resiliencies and assuring family input in the delivery of integrated psychosocial care. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

A randomized controlled trial testing a virtual program for Asian American women breast cancer survivors.

A culturally tailored virtual program could meet the survivorship needs of Asian American women breast cancer survivors (AABC). This study aims to determine the efficacy of a culturally tailored virtual information and coaching/support program (TICAA) in improving AABC's survivorship experience. A randomized clinical trial (NCT02803593) was conducted from January 2017 to June 2020 among 199 AABC. The intervention group utilized TICAA and the American Cancer Society [ACS] website while the control group used only ACS website for 12 weeks. The outcomes were measured using the SCNS-34SF (needs; primary), the MSAS-SF (symptoms; secondary), and the FACT-B (quality of life; secondary). The data were analyzed using an intent-to-treat approach. The intervention group showed significant reductions in their needs from the baseline (T0) to post 4 weeks (T1) and to post 12 weeks (T2). Although the changes were not statistically significant, the intervention group had decreased symptoms from T0 to T2 while the control group had an increase in their symptoms. The intervention group had a significant increase in their quality of life from T0 to T2. A culturally tailored virtual program could therefore improve quality of life in AABC patients. Trial Registration: To Enhance Breast Cancer Survivorship of Asian Americans (TICAA), NCT02803593, https://clinicaltrials.gov/ct2/show/NCT02803593?titles=TICAA&draw=2&rank=1.

Advancing family science and health equity through the 2022-2026 National Institute of Nursing Research strategic plan.

BACKGROUND: Consistent with the National Institute of Nursing Research's mission of leading nursing research to address current health challenges, the new Strategic Plan identifies five research lenses: health equity, social determinants of health, population and community health, prevention and health promotion, and systems and models of care. Family research, central to nursing research and practice, is the cornerstone of social ecology and represents a critical intersection of social and structural determinants of health. PURPOSE: We argue why family health is essential to the 2022-2026 Strategic Plan and how the lenses can strengthen family research. METHODS: Drawing from collective expertise and existing literature in family research, sociology, psychology, and nursing science, the authors present a new conceptual model that integrates structural racism and heteropatriarchy to examine the salience of family structure statuses for family outcomes and discuss approaches to research design, empirical measurement, and interpretation in order to bring this new model into practice. DISCUSSION: The NINR Strategic Plan has the potential to dismantle structures that perpetuate racism and health inequity within and across family structures. An underaddressed research area under the new Strategic Plan relates to how social determinants of health influence and are influenced by families. CONCLUSION: We challenge all investigators, not just family scientists, to expand the scope of their research to conceptualize the role of family on health inequities.

Narrative Analysis of Urban-Dwelling Pregnant Puerto Rican Women: Fuerza y Tenacidad.

Among Latina subgroups residing in the mainland United States, Puerto Rican women have the highest infant mortality rates when compared to all Latinas. Despite this, little is known about their daily lives in urban settings. This narrative analysis describes the stories regarding the life course of 21 pregnant Puerto Rican women living in an urban area in the mainland United States to identify plot types and underlying dimensions of their social ecology. Holistic form analysis was used to identify the structure of the narratives with graphical representations of the three identified types of plots (series of events that make up a story). Holistic content analysis was used to describe the major components of the narratives. Three primary plot types emerged from the narratives: Progressive, Neutral, and Circular. The women exhibited strength and tenacity to survive within a challenging urban setting often complicated by social pressures of their culture. The findings show the diversity of their lives and their social contexts even though from the viewpoint of being pregnant, Puerto Rican women who lived in a single neighborhood they may seem remarkably similar to an outsider.

Development of the perceived miscommunication measure in the pediatric intensive care unit.

PURPOSE: Miscommunication between parents and healthcare providers in the Pediatric Intensive Care Unit (PICU) can affect family-provider relationships and outcomes. This paper reports on the development and psychometric testing of a measure for parent perceived miscommunication, defined as the failure to communicate clearly as perceived by relevant stakeholders in the PICU. DESIGN AND METHODS: Miscommunication items were identified through a review of the literature with interdisciplinary experts. In a cross-sectional quantitative survey, the scale was tested with 200 parents of children discharged from a PICU at a large Northeastern Level 1 Pediatric hospital. The psychometric properties of a 6-item miscommunication measure were assessed using exploratory factor analysis and internal consistency reliability. RESULTS: Exploratory factor analysis yielded one factor explaining 66.09% of the variance. Internal consistency reliability in the PICU sample was α = 0.89. As hypothesized, there was a significant correlation between parental stress, trust, and perceived miscommunication in the PICU (p < .001). Confirmatory factor analysis supported good fit indices in testing the measurement model (χ2/df = 2.57, Goodness of Fit Index (GFI) = 0.979, Confirmatory Fit Index (CFI) =0.993 and Standardized Mean Residual (SMR) = 0.0136). CONCLUSIONS: This new six-item miscommunication measure shows promising psychometric properties including content and construct validity, which can be further tested and refined in future studies of miscommunication and outcomes in PICU. PRACTICE IMPLICATIONS: Awareness of perceived miscommunication in the PICU can benefit stakeholders within the clinical environment by recognizing the importance of clear and effective communication and how language affects the parent-child-provider relationship.

School readiness and social determinants of health: A collaboration with community teachers and parents.

PURPOSE: To explore perceptions of community dwelling caregivers of preschool-aged children regarding the influence of social determinants of health (SDOH) on children's school readiness. Parents' perspectives regarding solutions to enhance school readiness in preschool-aged children are also explored. METHODS: This study employed a qualitative, descriptive design and a community based participatory research (CBPR) approach. An academic institution collaborated with parents, teachers, and administrators at a community-based preschool learning center. Ten young-adult to middle-aged mothers and caregivers attended two separate focus groups and completed open-ended questionnaires. Inductive and deductive thematic analysis of text were employed. FINDINGS: Three themes emerged 1) Families described the vast lack of appropriate community resources and inability to access those resources that are available to prepare their children for school 2). Family members need help processing information about social resources 3) Community, individual and systemic level solutions to enhance school readiness. CONCLUSIONS: Academic-Community partnerships provide an opportunity to (1) identify solutions to remove systemic barriers that impede children's readiness for school, and (2) design interventions to support families through that process. Interventions to enhance school readiness should be family-focused and can be informed by understanding the influence of SDOH during the planning stages. SDOH create barriers and prevent parents from prioritizing their children's school, health-care, and developmental needs. PRACTICE IMPLICATIONS: Interventions to enhance school readiness should be family-based and can be informed by understanding the influence of SDOH during the planning stages. Social advocacy is also needed to enhance the ability of parents to enhance their children's school readiness.

Psychosocial impact of COVID-19 on caregivers and adolescents and young adult survivors of childhood cancer.

BACKGROUND: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics. PROCEDURE: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19. RESULTS: Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time. CONCLUSIONS: COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

PURPOSE: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. METHODS: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. RESULTS: An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. CONCLUSIONS: The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

Social Determinants of Health in the Lives of Urban-Dwelling, Pregnant Puerto Rican Women and Families: Nursing Implications From a Secondary Narrative Analysis.

Urban-dwelling childbearing Puerto Rican women and families on the U.S. mainland face a myriad of social determinants that affect pregnancy and overall health outcomes. Historically, Puerto Ricans have poorest pregnancy outcomes of all Hispanic women. Acknowledgment of the cyclic, structural barriers faced by this patient population is essential to providing wholistic care. Here, we discuss family nursing implications derived from narrative analysis of a parent study that investigated ecological systems affecting 21 pregnant Puerto Rican women residing in an impoverished and crime-ridden neighborhood in Philadelphia. Content analysis of interviews revealed interwoven social determinants of health embedded in participant narratives. Furthermore, we present case vignettes based on integration of participant interviews that encapsulate the everyday experiences of these women and their families and provide clinicians with guidance and strategies for interacting with and advocating for this population.

Ethical Challenges Experienced by Clinical Ethicists during COVID-19.

BACKGROUND: The COVID-19 pandemic continues to disrupt every society as SARs-CoV-2 variants surge among the populations. Health care providers are exhausted, becoming ill themselves, and in some instances have died. Indeed, hospitals are struggling to find staff to care for critically ill patients most in need. Previous work has reported on the unending work-related conditions that hospital staff are laboring under and their subsequent mental and physical health strains. Health care providers need support, but it is not clear where that support is to come from. While much research has reported on the COVID-19-related fears of nurses and physicians, fewer studies have focused on supportive features of the hospital work environment and how it may provide relief to front-line health care providers. PURPOSE: This purpose of this study was to explore an often-overlooked resource within hospital systems across the United States-clinical ethicists-and examine their many roles during COVID-19 and the types of ethical issues they addressed with nurses, physicians, administrators, and others. METHODS: This was a primary analysis of semi-structured, qualitative interviews with 23 clinical ethicists across the United States. The interviews were conducted from November 2020-April 2021 and were audiotaped, transcribed verbatim, and de-identified; both inductive and deductive analyses were used to identify qualitative themes. RESULTS: Five major themes were identified: ethical issues that were increasingly more complex, moral distress that was "endemic," shifting ethical paradigms from the focus on the individual to the population, fostering a supportive environment, and organizational ethics: variation in the value, roles, and policy input of clinical ethicists. CONCLUSIONS: Our findings report on the integral and expanded role of clinical ethicists at an unprecedented time in our nation, and how they stepped forward to support front-line clinicians in hospitals across the country.

Beliefs and willingness towards participating in genetic testing for depression in low-income and racial/ethnic minority mothers at-risk.

PURPOSE: To identify mothers' salient normative, behavioral and control beliefs and willingness towards participating in genetic salivary testing for depression. DESIGN: A qualitative, descriptive design was employed. 41 multi-ethnic mothers completed surveys that underwent directed content analysis according to The Theory of Planned Behavior. Percentages and frequency counts were used to categorize responses and calculate willingness. FINDINGS: Salient beliefs included: Behavioral: Finding a cure/treatment for depression (29.3 %), Normative: Family would approve (46.3 %), and Church associates would disapprove (19.5 %). CONTROL: Lacking information/explanations (34.1 %) as barriers, convenient locations (24.4 %) as facilitators. Most mothers indicated a willingness to participate (90.2 %). CONCLUSIONS: Interventions should target families, emphasize benefits, explain purposes and procedures, and use community based participatory methods.