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. 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.

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.

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. 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.

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.

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

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.

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. 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.

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. 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.

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. 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.

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. 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.

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

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.

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. Although the FMSF and FaMM were originally developed for use with families in which there was a child with a chronic physical condition, both have been applied to a broader range of health conditions and to studies focusing on families with an adult member facing a health challenge. Based on our findings, we make recommendations for how researchers can more fully address all aspects of the FMSF.

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). We report a worked example of the processes used to extend the original good parent themes and detail our processes through one good parent theme. The methods we describe are a promising approach to extend thematic analysis findings and advance thematic expansions toward development of more formal theoretical syntheses.

Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.

The experience of adults with sickle cell disease and their HLA-matched adult sibling donors after allogeneic hematopoietic stem cell transplantation.

AIM: To provide a rich description and in-depth understanding of the recipient-donor allogeneic hematopoietic stem cell transplantation experience. BACKGROUND: A stem cell transplant has a high likelihood of improving symptoms of sickle cell disease in adults. While studies have reported the transplant experiences of recipients and donors with haematological malignancies, no published reports have examined the experience of both adult recipients with sickle cell disease and their donors. DESIGN: Exploratory qualitative descriptive analysis. METHODS: We conducted individual interviews with 13 recipients and donors (eight males, five females) representing five recipient-donor dyads and one recipient-donor triad from one Midwest transplant centre between August 2017-February 2018. Interviews were digitally audio-recorded, transcribed verbatim and analysed using conventional content analysis. FINDINGS: Five themes were identified: the downward spiral and a second chance; getting the monster off my back; difficult and manageable; it was worth it; and relating to the healthcare team. CONCLUSIONS: The results provide a description and insights into the complex nature of the stem cell transplant experience in sickle cell disease from the perspectives of both recipients and donors. IMPACT: Health provider awareness of recipient-donor experiences can contribute to family-centred care that supports the health and quality of life for both recipients and donors. This understanding promotes high quality clinical care and improved communications by taking into account the knowledge, values and informed preferences of recipients and donors and contributes to improved decision-making and clinical care. Future research can assess family experiences that support informed choice for potential transplant candidates.

Understanding familial response to parental advanced cancer using the family management style framework.

Purpose: A parental advanced cancer diagnosis can have profound and lasting impact on family functioning. We used an adapted version of the Family Management Style Framework (FMSF) to identify and describe patterns of family management in parental advanced cancer. Design: This is a secondary analysis of data from a cross-sectional, mixed-methods study. Forty-two adults participated in semi-structured, in-depth interviews about their experiences as a parent with advanced cancer and completed measures of psychosocial functioning. We analyzed interviews using codes derived from the FMSF and used directed content analysis to identify themes reflected in the coded data. Findings: We identified five distinct patterns of family management in parental advanced cancer: (1) Equipped and Optimistic; (2) Equipped and Pragmatic; (3) Discouraged and Struggling; (4) Apprehensive and Passive; and (5) Discouraged and Conflicted. Conclusions: The FMSF was a useful framework for differentiating and understanding underlying patterns of family response to parental advanced cancer.

Challenges to Family Management for Caregivers of Adolescent and Young Adult Survivors of Childhood Brain Tumors [Formula: see text].

Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.

Parent perceptions of the impact of the Paediatric Intensive Care environment on delivery of family-centred care.

OBJECTIVES: To examine parent perception of how the physical and cultural environment of the paediatric intensive care unit impacted the implementation of family-centred care as outlined by the Institute for Patient and Family Centered Care. RESEARCH DESIGN: A qualitative descriptive design utilizing secondary analysis from a longitudinal study. Sixty-one interviews with three mothers and three fathers (31 interviews with mothers, 30 interviews with fathers) of infants with complex congenital heart defects treated in a paediatric intensive care unit were subjected to secondary analysis via content analysis. The previously completed individual interviews with parents took place at least monthly ranging from soon after birth of their infant to one year of age or infant death, whichever occurred first. FINDINGS: The family-centred care core concepts of information sharing, participation, respect and dignity were present in parent interviews. Parents indicated that the physical and cultural environment of the pediatric intensive care unit impacted their perceptions of how each of the core concepts was implemented by clinicians. The unit environment both positively and negatively impacted how parents experienced their infant's hospitalisation. CONCLUSION: In the paediatric intensive care unit, family centred care operationalised as policy differed from actual parent experiences. The impact of the physical and cultural environment should be considered in the delivery of critical care, as the environment was shown to impact implementation of each of the core concepts.

Concept Analysis and the Advance of Nursing Knowledge: State of the Science.

PURPOSE: Despite an overwhelming increase in the number of concept analyses published since the early 1970s, there are significant limitations to the impact of this work in promoting progress in nursing science. DESIGN: We conducted an extensive review of concept analyses published between 1972 and 2017 to identify patterns in analysis and followed this with exploration of an exemplar related to the concept of normalization to demonstrate the capabilities of analysis for promoting concept development and progress. METHODS: Scoping review of peer-reviewed literature published in the Cumulative Index to Nursing and Allied Health Literature (CINAHL) in which the terms "concept analysis," "concept clarification," and "concept derivation" appeared in any part of the reference. The original search returned 3,489 articles. This initial pool was refined to a final sample of 958 articles published in 223 journals and addressing 604 concepts. A review of citations of the original analysis of the concept of normalization resulted in 75 articles selected for closer examination of the process of concept development. FINDINGS: Review showed a clear pattern of repetition of analysis of the same concept, growth in number of published analyses, preponderance of first authors with master's degrees, and 43 distinct descriptions of methods. Review of the 75 citations to the normalization analysis identified multiple ways concept analysis can inform subsequent research and theory development. CONCLUSIONS: Conceptual work needs to move beyond the level of "concept analysis" involving clear linkage to the resolution of problems in the discipline. Conceptual work is an important component of progress in the knowledge base of a discipline, and more effective use of concept development activities are needed to maximize the potential of this important work. It is important to the discipline that we facilitate progress in nursing science on a theoretical and conceptual level as a part of cohesive and systematic development of the discipline. CLINICAL RELEVANCE: The absence of effective concepts impedes the ability to recognize, discuss, define, and conduct studies important to clinical practice and research. This article reflects the pressing need as well as the potential for concept analysis work to be approached in a way that promotes nursing science and enables conceptually sound research to improve clinical care.

Patterns of family management for adolescent and young adult brain tumor survivors.

Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record

"It's a Long-Term Process": Description of Daily Family Life When a Child Has a Feeding Disorder.

Pediatric feeding problems occur in 25% of the general pediatric population and up to 80% of those who have developmental delays. When feeding problems place the child at nutritional risk, families are typically encouraged to increase their child's intake. Family mealtime can become a battle, which further reinforces problematic feeding behaviors from the child and intensifies well-intentioned but unguided parental mealtime efforts. Family has an essential influence on feeding; however, studies to date neglect to address the family context of feeding difficulty. In this study we describe, in the context of everyday life, family management of feeding when a child had a significant feeding problem. Parents of children with feeding problems were interviewed with the Family Management Style Framework components as a guide. Twelve parents participated, representing nine families of children with feeding disorder. Description of family management of feeding provides a foundation for development of family feeding interventions.