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The purpose of this study was to examine health care professionals' views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals' semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research. [ABSTRACT FROM AUTHOR]

The purpose of this secondary analysis was to identify the meaning of normalization for parents of a child with a chronic genetic condition. The sample was comprised of 28 families (48 parents), selected to reflect two groups: Normalization Present (NP) and Normalization Absent (NA). Constant comparison analysis was used to identify themes characterizing parents' perceptions of the meaning of normalization. The meanings parents attributed to normalization reflected their evaluation of condition management, parenting role, and condition impact, with parents in the NP and NA groups demonstrating distinct patterns of meaning. These meaning patterns are discussed as an outcome of normalization. Providers can play a pivotal role in helping families achieve normalization by providing guidance on how to balance condition management with normal family life. © 2010 Wiley Periodicals, Inc. Res Nurs Health 33:87-98, 2010 [ABSTRACT FROM AUTHOR]

The article features Doctor Marcia Van Riper, associate professor at the University of North Carolina in Chapel Hill, holder of joint appointments in the School of Nursing (SON) and the Carolina Center for Genome Sciences, and recipient of the Distinguished Contribution to Family Nursing Award 2009. She has nursing degrees and a master of arts (MA) degree in bioethics. The intersection of family and genetics is the focus of her teaching, research and practice. Also noted is her practice of visiting families of children with Down syndrome in her travels.

In families with children with genetic conditions, information management may influence how parents view their child; their reproductive decision making; and how, when, what, and why they communicate about the condition to other family members. The purpose of this study was to identify unique patterns of information management and to explore the relationship between these patterns and individual and family characteristics and functioning. The sample was composed of 142 parents in 86 families in which a child had a single-gene condition. Four distinct information management patterns were identified that varied in the parents' understanding of the genetic aspects of the condition: accurate understanding-open (35%, n = 30), accurate understanding-selective (24%, n = 21), discrepant understanding (15%, n = 13), and confused understanding (26%, n = 22). In two patterns, accurate understanding-open and accurate understanding-selective (59%), parents had an accurate understanding of the genetic aspects of the condition, and the patterns were differentiated from one another by parents' views about sharing information. In the discrepant understanding pattern, which included only two-parent families, one parent had an accurate understanding and one parent a confused understanding of the genetic aspects of the condition. In the confused understanding pattern, parents had an inaccurate understanding of one or more of the genetic aspects of the condition. Statistically significant differences were found between information management patterns and parents' education, family annual income, and health insurance coverage. These information management patterns reflect how parents access, interpret, and convey genetic information and can influence the effectiveness of health care providers' interactions with these families. © 2009 Elsevier Inc. All rights reserved. [ABSTRACT FROM AUTHOR]

Little is known about the ways in which older adults view or define successful aging. This qualitative study, therefore, examined older women's perceptions of the characteristics and components of successful aging. Transitions are complex person -- environment interactions that include the disruption of the individual's life and their responses to the disruption. Older adults experience many life transitions or changes in life situations, such as relocation or loss of spouse, that result in new life patterns and perhaps even changes in well-being. Because transition is theoretically a time of change that involves introspection and self-examination, older adults who are experiencing transition, such as the study sample, are expected to be able to express their views on successful aging. Acceptance of change, engagement, and comportment emerged as key components of successful aging. Findings from this study can contribute to the development of interventions for older women, in particular, and their families to promote and reinforce personal, social, and behavioral factors that lead to successful aging. [ABSTRACT FROM AUTHOR]

We describe parents' perspectives on research interviews with their children with single gene conditions. One hundred forty-two parents were interviewed between 2002 and 2003 in a larger study using a qualitative descriptive design. Two questions from the semi-structured interview guide were used to identify parents' perspectives about future interviews. Almost all of the parents said they would allow an interview with their children, but some parents specified stipulations. These stipulations included: focusing on age-appropriate information, limiting information with child, considering input from parents, and providing a child-oriented environment. Knowing this information, researchers can prepare to work more collaboratively with parents and include them more fully in the research process. © 2007 Wiley Periodicals, Inc. Res Nurs Health 31:4-11, 2008 [ABSTRACT FROM AUTHOR]

PURPOSE. The purpose of this analysis was to examine parents' (N = 142) concerns about issues (i.e., privacy of information, insurance, healthcare costs, employment, school) related to their children's genetic conditions. DESIGN AND METHODS. Using a series of matrices, thematic analysis was conducted focusing on parents' concerns. RESULTS. Parents were less concerned with privacy and more concerned with insurance, healthcare costs, employment, and school issues. PRACTICE IMPLICATIONS. Nurses and other healthcare professionals need to give parents the opportunity to discuss their concerns and to assist parents with strategies and resources to meet the needs of their children and families. [ABSTRACT FROM AUTHOR]

In a study of families having a child with a genetic condition, patterns of family functioning were identified through cluster analysis of families with two spouses. Patterns were based on both parents' assessments of family satisfaction and hardiness, as measured respectively by the Family APGAR and Family Hardiness Index. The validity and clinical significance of the clusters were supported by demonstrating that cluster membership distinguished between parental reports of their own quality of life and their child's functional status, as measured by the Quality of Life Index and the Functional Status II, respectively. The clusters were non-categorical in the sense that they did not depend on the type of genetic condition. These findings point to the importance of addressing family functioning as part of genetic counseling. [ABSTRACT FROM AUTHOR]

This article describes the process of translating the Family Management Style (FMS) Framework into a measure of FMS Survey. The conceptual underpinnings of the FMS Survey are briefly described as are the steps for translating the FMS major components and dimensions into a questionnaire to assess the family response to a childhood chronic illness. Content validity testing has been completed on the FMS Survey. Future plans include full-scale field testing of remaining psychometric properties. © 2006 by Association of Pediatric Oncology Nurses [ABSTRACT FROM AUTHOR]

Family researchers are challenged by the need to account for the special forms of statistical dependence that can exist in family data. To address this issue, mixed modeling methods were adapted to account for dependence of continuous outcomes measured across multiple family members. This was accomplished using a spatial autoregressive approach that accounts for dependence on direction as well as on distance apart. For family data, the dimensions underlying direction can correspond to different family members, thereby accounting for different correlations between family members. When the data are also longitudinal, a dimension representing distance apart in time also can be included to account for temporal correlation. Fixed effects involving general linear models can be included as well. Example analyses were conducted to demonstrate the use of the spatial autoregressive approach for modeling intra-familial correlation. [ABSTRACT FROM AUTHOR]

Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. Part I of this two-part series (in the previous issue of Pediatric Nursing) reviewed both the adult and pediatric family caregiving literature within the context of four major categories of responsibilities: (a) managing the illness, which includes hands-on care, monitoring and interpreting signs and symptoms, as well as problem-solving and decision-making processes; (b) identifying, accessing, and coordinating resources, which involves assessing and negotiating community resources including health care providers; (c) maintaining the family unit, including balancing illness and family demands while at the same time attempting to meet the health and developmental needs of each family member; and (d) maintaining self, including physical, emotional, and spiritual health.. Part II presents a multifaceted list of parent caregiving management responsibilities and associated activities, and discusses nursing implications. The list was developed to facilitate 'caregiving' dialogue between health care providers and families of children with chronic conditions. It is hoped that through such partnerships creative ways of educating, preparing, and supporting caregivers will be generated. [ABSTRACT FROM AUTHOR]

PURPOSEThe purpose of this paper was to identify and critique relevant existing instruments designed to measure self-management of type 1 diabetes in children and adolescents.METHODSLiterature on the self-management of type 1 diabetes in children and adolescents was systematically searched to identify instruments measuring self-management. After eliminating instruments that measured only one aspect of self-management, those published prior to DCCT findings, and those for which little information was available, 6 instruments were identified for review. Each instrument is discussed in terms of history and description of the instrument, definitions, psychometrics, findings from studies using the instrument, availability of the instrument, and evaluation.RESULTSAll of the instruments measure some of the activities of self-management; 1 expressly measures self-management; 1 measures the frequency of various self-care activities, and 4 measure adherence to prescribed diabetes regimens. Only 1 instrument comprehensively assesses the process of self-management. None measure the goals of self-management.CONCLUSIONSInstrument development has been hindered by the lack of clarity concerning the concept of self-management of type 1 diabetes in children and adolescents. Existing measures need to be further developed and new measures need to be designed. [ABSTRACT FROM AUTHOR]

The purpose of this review of 73 articles reporting family research was to identify major areas of inquiry and to draw conclusions about what is known about families in which a member has a chronic illness. The review identified two distinct clusters of research in which knowledge is being generated. The first cluster included descriptive studies of family response to illness. The second cluster included explanatory studies of variables contributing to response to chronic illness. Within each of these two broad clusters, focused areas of inquiry were identified and the results of these studies were synthesized. The findings of the review are discussed in terms of their implications for developing nursing interventions and future research. [ABSTRACT FROM AUTHOR]

The concept of normalization continues to be of interest to both clinicians and researchers. Studies of families facing diverse illness challenges have found that over time family members come to view both the child and their life as normal. Less attention has been focused on those families who do not view normalization as an attainable goal, families who are unable to sustain normalization over time, or those families whose socio-cultural backgrounds do not support or value normalization (Deatrick, Knafl, & Murphy-Moore, 1999). The intent of this paper is to consider the multiple, sometimes changing, ways that normalization is manifested in families and discuss the clinical implications of these differences. [ABSTRACT FROM AUTHOR]

AIM: An evolutionary concept analysis was undertaken to clarify the concept of self-management of type 1 diabetes in children and adolescents. BACKGROUND: Several problems exist in the literature on self-management of type 1 diabetes in children and adolescents. There is no uniform terminology and there is no uniform definition of the concept. Also, there is no differentiation in the literature between self-management of diabetes in children and adults. METHODS: Ninety-nine references were reviewed and analysed in the disciplines of nursing, medicine, and psychology. After separate analyses revealed no significant differences across disciplines, the analyses were combined to describe the attributes, antecedents, consequences, and surrogate and related concepts. RESULTS: The three essential attributes of the concept were identified as process, activities, and goals. Self-management of type 1 diabetes in children and adolescents is an active and proactive process; it is daily, lifelong, and flexible, and it involves shifting and shared responsibility for diabetes care tasks and decision-making between child and parent. It is a process that involves collaboration with health care providers. Self-management of type 1 diabetes in children and adolescents also consists of varied and many activities related to giving insulin, monitoring metabolic control, regulating diet and exercise, to name just a few. The concept also involves goals, which may differ from one parent/child dyad to another. A working definition of the concept is suggested. CONCLUSIONS: It is hoped that a more uniform definition of the concept will enable researchers to continue investigating antecedents and consequences of the concept in a way that allows for aggregating results. [ABSTRACT FROM AUTHOR]

Professionals commonly advise parents of disabled children to raise their children as they would children who were not disabled. The purpose of this study was to describe the management styles used by the parents of 15 children and adolescents with osteogenesis imperfecta. In particular, the behavioural strategies related to providing a normalized existence for the child and the family are discussed. Sources of threats, validation, and support for the process are also described. The convenience sample of parents was selected from the appointment calendar of a specialty clinic in a midwestern philanthropic, paediatric-orthopaedic referral hospital. Qualitative interview data were gathered using a semi-structured guide. During interviews parents described behavioural strategies they used to normalize their child's and family life. Data were analysed using a previously developed framework of normalization. This work of normalization was described as a constant process of active accommodation to the changing physical and emotional needs of the child or adolescent. It was initiated out of practical necessity at birth as a conscious solution to problems with activities of daily living, relating to the child, and engaging in family activities. Certain events constituted 'threats' to normalization and served as an impetus for parents to alter behavioural strategies. Implications for clinical practice and research are explicated. [ABSTRACT FROM AUTHOR]

The authors describe two complementary data management techniques -- family case summaries and computer generated matrices -- and their contribution to the analytic goals of a study of family response to childhood chronic illness. Family case summaries enabled the investigators to reduce a large qualitative data set in a way that preserved the family focus of the research. The use of a database management software system contributed to the efficient display and manipulation of thematically coded data in a way that fostered constant comparison of the data and analytic insights. The importance of using the two techniques in a way that supports the overall purpose and methodological underpinnings of a given study is emphasized. [ABSTRACT FROM AUTHOR]

The nature and quality of parent-professional relationships in two contrasting illness situations was explored in this study. Results are based on a secondary analysis of 32 families in which a child had diabetes and 20 families in which a child had life-threatening illness. Data analysis revealed three patterns of decision making across parents in the two illness situations: dependent, independent, and collaborative. These patterns varied in terms of the nature and amount of reliance on health care professionals. In addition, parental expectations of providers, placement of trust, and information exchange also varied and served to further define group differences. [ABSTRACT FROM AUTHOR]

The article offers tips on writing a successful proposal for undertaking qualitative research. The first advice is to make the case for the idea, not the method. In most proposals, the first few paragraphs are important because they constitute the drum roll leading up to the aims. It is also advised to avoid methodological tutorials and to use examples to clarify the research design.

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.

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.

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.

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.

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.

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.