Effects of Family Caregiver-Nurse Communication on Family Management and Family Caregiver Uncertainty Regarding the Care of Children With Long-Term Ventilator Dependence.

Nurses caring for hospitalized children with long-term ventilator dependence (LTVD) assess family management capability and teach new skills through communication with family caregivers. This theoretically-based quantitative, descriptive study aimed to determine the communication behaviors associated with family caregiver uncertainty and management of the child with LTVD's care after discharge. One hundred families and 48 nurses enrolled.

Trajectory of Infant Problematic Feeding Symptoms: Study Protocol.

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.

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

Background: To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation.

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.

Endometriosis and Disability: Analysis of Federal Court Appeals of Social Security Disability Insurance and Supplemental Security Income Claims by Individuals Suffering From Endometriosis.

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.

Family adaptation in families of individuals with Down syndrome from 12 countries.

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.

Informed Consent among Clinical Trial Participants with Different Cancer Diagnoses.

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.

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.

Predicting infant feeding intention and intensity in Oman using a path analysis approach.

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.

CROSS-CULTURAL ADAPTATION AND LINGUISTIC VALIDATION OF THE TRANSLATED ARABIC REVISED BREASTFEEDING ATTRITION PREDICTION TOOL.

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. 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.

A Mixed Methods Analysis of Care Coordination Needs and Desirable Features of an M-Health Application to Support Caregivers of Children With Down Syndrome.

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.

Development of Training in Problem Solving for Caregivers of Childhood Brain Tumor Survivors.

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.

A Pragmatic Guide to Qualitative Analysis for Pediatric Researchers.

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.

Family members' experience of well-being as racial/ethnic minorities raising a child with a neurodevelopmental disorder: A qualitative meta-synthesis.

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.

Perceived Experiences of Korean Immigrant Mothers Raising Children With Disabilities in the United States.

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.

Perceptions of Weight Management: Interviews with Adolescents with Severe Obesity and Their Mothers.

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.

Experiences of Patients After Withdrawal From Cancer Clinical Trials.

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.

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families.

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.

Timing, delays and pathways to diagnosis of endometriosis: a scoping review protocol.

Introduction: Pathways to diagnosis for women with endometriosis are frequently characterised with delays. Internationally, women face significant barriers and times to diagnosis. The prolonged time without a diagnosis may result in treatment delay, with clinical implications of chronic pain and an unknown effect on fertility outcomes.

Tracing the Use of the Family Management Framework and Measure: A Scoping Review.

This article reports the results of a scoping review of research applications of the Family Management Style Framework (FMSF) and the Family Management Measure (FaMM). We identified 32 studies based on the FMSF and 41 studies in which the FaMM was used, 17 of which were based on the FMSF. Both the framework and measure have been used by investigators in multiple countries, with most applications of the FaMM outside the United States.

Thematic expansion: A new strategy for theory development.

We developed and applied metasynthesis methods to expand previously reported thematic descriptions of parents' internal definition of "being a good parent to my seriously ill child" as part of a larger study to examine parenting of children with serious illness. Our systematic approach included: literature search, purposeful selection of grounded theories regarding parenting a seriously ill child, study summaries, mapping evidence of good parent themes onto structural elements of grounded theory, cross-study comparisons, and theoretical memoing to summarize analytic insights. Twenty-five grounded theory studies from 32 reviewed reports reflected multiple conditions (n=5), countries (n=10) and family members (n=386 families).