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BACKGROUND: Infants with developmental risk factors are more likely to have feeding problems and develop chronic feeding disorders. Early detection and understanding of the progression of problematic feeding and its relationship with a child's biological functioning and the family feeding environment will enhance effective symptom management and development of interventions to prevent pediatric feeding disorders. OBJECTIVES: The New Through Two (NewThru2) feeding study protocol is described. Study aims are to (a) characterize symptoms of problematic feeding and trajectories of symptoms from pre-discharge from neonatal intensive care through age 24 months; (b) determine the relationship of child biological function at discharge with symptom characteristics and trajectories; (c) describe the child's feeding environment and its relationship to symptoms from discharge through 24 months; and (d) determine the relationship between problematic feeding symptoms and growth and developmental outcomes. METHODS: NewThru2 is a prospective, longitudinal, mixed method study following over 200 infants who received care in a neonatal intensive care unit and were identified as at risk for compromised development. The study follows enrolled infants through 24 months of age. Symptoms of problematic feeding are measured pre-discharge by clinical observation and medical record review and post-discharge by parent report. Biological function is measured by medical history and cardiorespiratory and autonomic nervous system function during feeding prior to discharge. Child feeding environment is measured by strategies parents use to manage feeding, the effect of feeding on the parent and family, and the use of feeding services. A subset of parents is interviewed to achieve a contextual understanding of the family feeding environment. Child outcome measures include parent-reported feeding skills and clinician-reported growth and neurodevelopment. DISCUSSION: The results of this study will improve understanding of pediatric feeding disorders during a time of development sensitive to adequate nutrition and with infants at risk for developmental delays or impairments.

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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.

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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.

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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.

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BACKGROUND: Endometriosis, a chronic noncancerous gynecologic condition commonly characterized by disruptive physical and psychosocial symptoms, can be disabling. Individuals in the United States with endometriosis who are unable to work before retirement age can apply for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI). Given the multi-step process of disability review, it is important to better understand how disability decisions are made. This study aimed to examine approaches and rationales of U.S. federal appeals courts reviewing SSDI and/or SSI claims involving endometriosis-related issues of appeal. METHODS: We searched Westlaw and Nexis Uni records, available as of January 2021, for federal appeals of SSDI and SSI claims including endometriosis as an impairment. Two independent reviewers screened full-text cases and extracted data. Framework Analysis was applied to courts' rationales regarding endometriosis-related issues of appeal. RESULTS: Eighty-seven appeals addressed an endometriosis-related issue. Three themes-evidence, treatment, and time-were identified across the decisions. The courts' discussions across themes exposed rationales and evidentiary requirements that posed challenges for claimants with endometriosis. The courts found subjective reports of symptoms insufficient evidence of impairment and positive responses to treatments to indicate cures or prevent claimants from demonstrating the necessary continuous 12 months of impairment. Some courts expected claimants to use treatments such as contraception or hysterectomy without addressing the risks of such treatments or the fact that they might have been counter to claimants' needs and preferences. CONCLUSIONS: Individuals with endometriosis face evidentiary obstacles and common misconceptions about disease, diagnosis, and treatment in disability claims. SSDI and SSI endometriosis claims are systematically disadvantaged, particularly among those without access to care. The health care, policy, and legal systems can leverage the findings in this study to create a more equitable disability application and review system for those with chronic pain conditions such as endometriosis.

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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.

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IMPORTANCE: Informed consent is essential to ethical, rigorous research and is important to recruitment and retention in cancer trials. OBJECTIVE: To examine cancer clinical trial (CCT) participants' perceptions of informed consent processes and variations in perceptions by cancer type. DESIGN AND SETTING AND PARTICIPANTS: Cross-sectional survey from mixed-methods study at National Cancer Institute-designated Northeast comprehensive cancer center. Open-ended and forced-choice items addressed: (1) enrollment and informed consent experiences and (2) decision-making processes, including risk-benefit assessment. Eligibility: CCT participant with gastro-intestinal or genitourinary, hematologic-lymphatic malignancies, lung cancer, and breast or gynecological cancer (N = 334). MAIN OUTCOME MEASURES: Percentages satisfied with consent process and information provided; and assessing participation's perceptions of risks/benefits. Multivariable logistic or ordinal regression examined differences by cancer type. RESULTS: Most patient-participants felt well informed by the consent process (more than 90% overall and by cancer type) and. most (87.4%) reported that the consent form provided all the information they wanted, although nearly half (44.8%) reported that they read the form somewhat carefully or less. More than half (57.9%) said that talking to research staff (i.e., the consent process) had a greater impact on participation decisions than reading the consent form (2.1%). A third (31.1%) were very sure of joining in research studies before the informed consent process (almost half of lung cancer patients did-47.1%). Most patients personally assessed the risks and benefits before consenting. However, trust in physicians played an important role in the decision to enroll in CCT. CONCLUSIONS AND RELEVANCE: Cancer patients rely less on written features of the informed consent process than on information obtained from the research staff and their own physicians. Research should focus on information and communication strategies that support informed consent from referring physicians, researchers, and others to improve patient risk-benefit assessment and decision-making.

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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.

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Background: Low breastfeeding rates are a global concern, and few studies have examined breastfeeding in Oman. Aims: We examined the associations of mothers' sociodemographic characteristics, breastfeeding knowledge, attitudes, subjective norms, perceived control, previous breastfeeding experience, and early breastfeeding support with infant feeding intention at birth and breastfeeding intensity at 8 weeks postpartum. Methods: We used a descriptive, prospective cohort design. Data collection was in 2016. We administered a structured questionnaire to mothers at postpartum discharge from 2 hospitals in Oman and followed up once via a 24-hour dietary recall at 8 weeks. We used a path analysis model (n = 427) using SPSS, version 24.0, and Amos, version 22. Results: During the postpartum hospitalization, 33.3% of mothers reported that their babies received formula milk. At the 8-week follow-up, 27.3% of mothers were exclusively breastfeeding. Subjective norms (measured by social and professional support) were the strongest predictors. Infant feeding intention significantly predicted breastfeeding intensity. Returning to work/school was the only sociodemographic variable to significantly correlate with breastfeeding intensity (r = -0.17; P < 0.001); mothers who planned to return to work/school had significantly lower intensity. Knowledge significantly predicted positive and negative attitudes, subjective norms and perceived control. Early breastfeeding support negatively correlated with breastfeeding intensity (r= -0.15; P < 0.001). Conclusion: Infant feeding intention positively predicted breastfeeding intensity with subjective norms or social and professional support and had the strongest correlation with mothers' intentions.

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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.

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INTRODUCTION: Care coordination is critical for the management of health care needs of children with Down syndrome by encompassing management of health information and linking of providers. This study was designed to identify caregiver and health care provider experiences of care coordination to inform the development of an m-health application. METHOD: In this mixed methods study, caregivers completed survey materials addressing the child's health care needs, m-health use, and care coordination experiences. A sample of caregivers and health care providers were interviewed to further understanding. RESULTS: Most caregivers reported having a primary health care provider but wanted increased communication and help with care coordination. Interview data identified themes related to care coordination challenges, including information management, information sharing, use of health care guidelines, tracking health data, resources, technology use, previous application use, and coordination of schedules. DISCUSSION: Qualitative themes were linked to desired features of an m-health application to aid in development.

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Importance: Attrition in cancer clinical trials (CCTs) can lead to systematic bias, underpowered analyses, and a loss of scientific knowledge to improve treatments. Little attention has focused on retention, especially the role of perceived benefits and burdens, after participants have experienced the trial. Objectives: To examine the association between patients' perceived benefits and burdens of research participation and CCT retention. Design, Setting, and Participants: This survey study was conducted at a National Cancer Institute-designated comprehensive cancer center in the Northeast region of the US. The sample included adult patients with a cancer diagnosis participating in cancer therapeutic trials. Data were collected from September 2015 to June 2019. Analysis of study data was ongoing since November 2019 through October 2022. Exposures: Self-reported validated survey instrument with a list of 22 benefits and 23 burdens of research participation that can be rated by patients with a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Main Outcomes and Measures: A primary outcome was actual withdrawal from the CCT, and a composite outcome was composite withdrawal that included both actual withdrawal and thoughts of withdrawing. Bivariate and multivariable logistic regressions were used. Results: Among the 334 participants in the sample, the mean (SD) age was 61.9 (11.5) years and 174 women (52.1%) were included. Top-cited benefits included both aspirational and action-oriented goals, including helping others (94.2%), contributing to society (90.3%), being treated respectfully (86.2%), and hoping for a cure (86.0%). Worry over receiving a placebo (61.3%), rearranging one's life (41.9%), and experiencing bothersome adverse effects (41.6%) were notable burdens. An increased burden score was associated with a higher probability of actual withdrawal (adjusted odds ratio [OR], 1.86; 95% CI, 1.1-3.17; P = .02) or composite withdrawal (adjusted OR, 3.44; 95% CI, 2.09-5.67; P < .001). An increased benefit score was associated with lower composite withdrawal (adjusted OR, 0.40; 95% CI, 0.24-0.66; P < .001). For participants who reported the benefits as being equal to or greater than the burdens, 13.4% withdrew. For those who perceived the benefits as being less than the burdens, 33.3% withdrew (adjusted OR, 3.38; 95% CI, 1.13-10.14; P = .03). The risk of withdrawal was even higher for the composite outcome (adjusted OR, 7.70; 95% CI, 2.76-21.48; P < .001). Conclusions and Relevance: This survey study found that patients perceived important benefits from CCT participation, and this perception was associated with trial retention, even among those who also perceived substantial burdens. A broader dialogue among stakeholders can inform an ethical and patient-centric focus on benefits throughout the course of a CCT to increase retention.

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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.

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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.

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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.

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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.

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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.

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Importance: Cancer clinical trials (CCTs) provide patients an opportunity to receive experimental drugs, tests, and/or procedures that can lead to remission. For some, a CCT may seem like their only option. Little is known about experiences of patient-participants who withdraw or are withdrawn from CCTs. Objective: To examine patient-participants' experiences during withdrawal from CCTs. Design, Setting, and Participants: This qualitative, descriptive study used a semistructured interview designed specifically for it, with open-ended and probing questions. The study took place at a National Cancer Institute-designated comprehensive cancer center affiliated with the University of Pennsylvania. The need for a sample of 20 interviewees was determined by code and meaning saturation (ie, no new themes revealed and identified themes fully elaborated). Interviews were transcribed verbatim and analyzed with a qualitative software program. Data coded with the software were refined into categories reflecting broad themes. A criterion-based sampling approach was used to select a subset of adult patients with cancer who were former CCT participants and who agreed on exit from those CCTs to a later interview about withdrawal experiences. They were contacted one by one by telephone from September 2015 through June 2019 until 20 agreed. Data analysis was completed in October 2020. Main Outcomes and Measures: Themes characterizing patient-participants' perceptions of their withdrawal experiences. Results: Respondents' mean (SD) age was 64.42 (8.49) years; 12 (63.2%) were men. Most respondents were White (18 respondents [94.7%]) and college educated (11 respondents [55.0%]). Cancer stage data were available for 17 participants, 11 of whom (64.7%) had stage IV cancer at CCT enrollment. Thirteen respondents reported withdrawal as a result of disease progression, and 5 withdrew because of adverse effects. Other reasons for withdrawal included acute illness and participant uncertainty about the reason. Analysis of interview data yielded 5 themes: posttrial prognostic awareness, goals of care discussions, emotional coping, burden of adverse effects, and professional trust and support. Subthemes included regrets or hindsight, urgency to start next treatment, and weighing benefits and burdens of treatment. Limited discussions about patient-participants' immediate posttrial care needs left many feeling that there was no clear path forward. Conclusions and Relevance: Patient-participants transitioning from a CCT described feeling intense symptoms and emotions and awareness that their life span was short and options seemed to be limited. Communication that includes attention to posttrial needs is needed throughout the CCT to help patient-participants navigate posttrial steps. Research should focus on components of responsible and ethical CCT transitions, including types and timing of discussions and who should begin these discussions with patient-participants and their families.

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Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families' care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families' recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.