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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.

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS., (© 2023 Wiley Periodicals LLC.)

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., Competing Interests: Declaration of Competing Interest Tamryn F. Gray—Consultant for AARP Public Policy Institute; Consultant for Caring for Caregivers National Advisory Council., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Background: To analyze the relationship of child behavioral and communication disorders, and adverse family events, to later-in-life child health and cognitive function among youth born extremely preterm., Methods: The study participants were 694 children enrolled in the Extremely Low Gestational Age Newborn Study. At ages 2 and 10, we assessed internalizing and externalizing behaviors, and at age 10, we assessed adverse life events within the family. Associations were evaluated between these child and family factors and positive child health at age 10 years, and global health and cognitive function at age 15 years., Results: Lower T-scores for internalizing or externalizing behaviors at age 2 were associated with more positive health at age 10. The absence of internalizing behaviors at age 10 was associated with better global child health and better cognitive function at age 15. The absence of communication deficits at age 10 was associated with better cognitive function at age 15. The absence of parent job loss was associated with better global child health at age 15., Conclusion: Among individuals born extremely preterm, child health and cognitive outcomes might be improved by timely interventions to address child behavioral symptoms and the impact of adverse life events in the family., Impact: The absence of child behavioral and communication disorders, and adverse family events, were associated with more positive health, higher global health, and better cognitive function among youth born extremely preterm. Interventions to address behavioral disorders in early childhood, and to reduce the impact of adverse life events on the family, might promote improved health and developmental outcomes for adolescents born extremely preterm., (© 2023. The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.)

Background and Purpose: The diversity of populations across the globe and the need to better compare research findings make it imperative to validate research instruments across cultures. The purpose is to systematically describe the translation and the cross-cultural validation of the Revised-Breastfeeding Attrition Prediction Tool from English to Arabic. Methods: The process of cross-cultural validation included (a) translation and linguistic validation: forward- and back-translations; (b) expert evaluation using content validity index (CVI); (c) cognitive interviews (CIs), and (d) pilot testing with postpartum mothers. Results: The item-CVI scores ranged from .8 to 1.00 and the scale-CVI was .95. The CIs identified items that required modification. The reliability coefficient of the pilot-test was .83 and subscale reliabilities ranged from .31 to .93. Discussion: The translation process provided confirmation for the appropriateness of the translated tool to Arabic., (© Copyright 2023 Springer Publishing Company, LLC.)

Objective: To describe four approaches to qualitative analysis in order to provide a pragmatic, application-oriented guide to their use in research focused on children and their families., Methods: Four commonly used approaches to qualitative analysis-framework analysis, rapid qualitative analysis, content analysis, and reflexive thematic analysis-are described and compared, including their analytic strategies, tips for use, terminology, and application to a hypothetical example., Results: A pragmatic guide to each method is provided as well as examples of how each analytic approach could be utilized to analyze the same dataset., Conclusions: A variety of approaches to qualitative analysis are available to both novice and experienced qualitative researchers. The approach selected from the options presented in this article will depend on numerous factors, such as the clinical problem being explored, research context, aims, objectives, research questions, and resources available such as time and funds, and the qualitative expertise of the team., (Published by Oxford University Press on behalf of the Society of Pediatric Psychology 2022. This work is written by US Government employees and is in the public domain in the US.)

Purpose: The purpose of this qualitative descriptive study was to explore primary caregivers' perception of how social-environmental characteristics, and their own role as primary caregivers, affected their extremely preterm adolescent's well-being., Methods: Participants were 20 mothers who identified as the primary caregiver of an adolescent born extremely prematurely (<28 weeks gestation) enrolled in the ELGAN cohort study. Data was collected through individual interviews and was analyzed using inductive content analysis., Results: A total of three themes, and five subthemes, were identified. The two main themes were "familial impact to health and well-being," and "contributors and barriers at the community level." This study described specific familial and community contributors to child and caregiver well-being, including: the importance of advocacy, participating in community activities, and social and familial support networks., Conclusions: Overall, while there are individual level characteristics that contribute to well-being, a support structure at the family and community level is essential to children born extremely prematurely, and their mother's, well-being., Practice Implications: Healthcare providers caring for these families should understand that not only are extremely preterm youth affected by prematurity, but caregivers are also deeply impacted. Therefore, it is essential that maternal and family care is emphasized by nurses and healthcare providers., Competing Interests: Declaration of Competing Interest No declaration of interest to report., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Background: Family management (FM) challenges of maternal caregivers of young adult survivors of childhood brain tumors are well documented, but there are no evidence-based caregiver interventions to improve FM., Objectives: The aims of this study were to (1) generate the knowledge necessary for developing a caregiver intervention (stage 0) and (2) modify an existing, efficacious intervention by engaging stakeholders (stage 1)., Methods: Stages 0 and 1 of the National Institutes of Health Stage Model for Behavioral Intervention Development and the FM Styles Framework were used in this study., Results: In stage 0, families with condition-focused FM patterns were identified as at risk for poor problem solving. The 12-item Condition Management Ability scale of the FM Measures was selected as the screener to identify condition-focused maternal caregivers. Problem solving was identified as a potential mechanism for promoting behavior change. In stage 1, Bright IDEAS for Everyday Living was modified by integrating the FM Styles Framework creating Training in Problem Solving for Caregivers of Young Adult Survivors of Childhood Brain Tumors. Qualitative and quantitative assessments of feasibility and acceptability by maternal caregivers were excellent and used to improve selected areas of concern., Conclusion: Feedback from stakeholders indicates that Training in Problem Solving is a promising approach to shifting FM patterns and improving the functioning of caregivers, young adult survivors, and families., Implications for Nursing Practice: When developing interventions, the use of systemic methods can provide both clinically based and scientifically acceptable solutions. Those interventions based on both problem solving and FM are potentially promising but need further testing., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Adolescence is a challenging time for families, which is intensified when managing a chronic health condition. In adolescents with severe obesity, little is known about how adolescent/mother dyads approach management. Our study aims to (1) explore similarities/differences in adolescent/mother dyads' perceptions of weight management behaviors and (2) describe their experiences with successes and challenges related to weight management. Methods: This was a qualitative descriptive analysis of interviews from 21 adolescent/mother dyads. Conventional content analysis was used to identify themes characterizing dyads' weight management efforts. Results: Two patterns of perceptions were identified across the dyads specific to weight management behaviors: collaborative (dyads agreed) and conflicting (dyads disagreed). Weight management themes with collaborative perceptions were food preferences ; food and emotion ; the adolescent is active ; exercise is not enjoyable ; the family is active together ; and stopping medications . Weight management themes with conflicting perceptions were responsibility for initiating and maintaining exercise , motivation and willingness to exercise , and responsibility for medications . Dyads had collaborative pattern responses on perceptions of success and challenges. Themes related to successes were weight loss and supportive relationships. Themes related to challenges were inconsistent daily routines and schedules , and unsupportive relationships . Conclusions: Dyads responded with collaborative or conflicting perceptions to weight management behaviors and with collaborative responses to success and challenges. Sustaining healthy habits was difficult from the perspectives of dyads. For youth with severe obesity, providing care that recognizes and addressees issues youth and their families experience may require improved and innovative interventions.

Raising a child with a neurodevelopmental disorder has often been associated with poorer quality of life and family functioning. Yet, many family members describe themselves as resilient and capable of achieving well-being. Whether and how this occurs in racial/ethnic minority families remains largely unexplored. The aim of this study was to systematically synthesize qualitative studies exploring how families from a racial/ethnic minority background in the United States (1) experienced well-being and (2) responded to challenges they faced while caring for a child diagnosed with three selected neurodevelopmental disorders: autism spectrum disorder, attention deficit hyperactivity disorder, and intellectual disability. A systematic literature search was conducted in November and December of 2019 and updated in October 2021. Three themes were developed based on included studies: "moving toward well-being as a caregiver," "family and culture: impact on well-being," and "community and culture: impact on well-being." The findings in this review indicate that to develop well-being, racial/ethnic minority families faced additional barriers, including racial/ethnic discrimination and stigma within their family and cultural community. The knowledge generated has the potential to identify areas of intervention to promote resilience and well-being in racial/ethnic minority families raising a child with a neurodevelopmental disorder., (© 2022 Wiley Periodicals LLC.)

Introduction: The challenges of acculturation that immigrant families experience could intensify if they have a child with a disability. This qualitative descriptive study aimed to describe the experiences of Korean mothers raising children with a disability in the United States., Methodology: Semi-structured interviews were conducted based on the Resilience Model of Family Stress, Adjustment, and Adaptation. Directed content analysis was used., Results: Six Korean mothers participated in the interview and 16 codes were identified in relation to the five concepts of the Resilience Model, namely family demands, family resources, family appraisal, family problem-solving and coping, and family adaptation. Overall, mothers thought their families were well-functioning and viewed their quality of life positively within the context of immigration despite experiencing various family demands., Discussion: Findings of this study showed the resilience of Korean immigrant mothers and revealed the importance of understanding and considering unique cultural differences when providing care to this population.