Caregiver condition management and family functioning after pediatric cancer treatment: Moderation by race and ethnicity.

OBJECTIVE: End of pediatric cancer treatment requires family adjustment. Caregivers who struggle to incorporate the child's condition into family life have poorer family outcomes. To better understand factors that contribute to successful transition off active childhood cancer treatment, we sought to examine caregiver perceived management ability of the youth's condition and family functioning as predictors of caregiver distress, evaluate family functioning as a mediator between perceived ability and distress, and explore race and ethnicity as a moderator between perceived ability and family functioning. METHODS: Caregivers (N = 141) completed measures assessing family management (condition management ability; CMA), family functioning, and distress as part of a clinical education and screening program within 1 year of the end of treatment. Bias-corrected bootstrap regression analyses examined mediation and moderated mediation models with patient race and ethnicity as the moderator. RESULTS: The overall mediation model was statistically significant for CMA→family functioning→distress. Race and ethnicity moderated the relationship between CMA and family functioning, but the full model was not significant. CMA was related to family functioning for caregivers of non-Hispanic white youth, but not caregivers of Hispanic youth. Family functioning was related to distress for all caregivers. CONCLUSIONS: Family functioning serves as an initial intervention target to reduce caregiver distress. Caregiver perceived management ability of their child's condition is a meaningful predictor of family functioning and distress for caregivers of non-Hispanic white youth, yet CMA may be limited as a screener of family management patterns for diverse populations, and other family management dimension may be more applicable.

Five Dimensions of Needs for Help: The Efficacy of a Technology-Based Intervention Among Asian American Breast Cancer Survivors.

Cancer survivors including Asian American breast cancer survivors have reported their high needs for help during their survivorship process. With the COVID-19 pandemic, the necessity of technology-based programs to address their needs for help without face-to-face interactions has been highlighted. The purpose of this randomized intervention study was to determine the efficacy of a technology-based program in reducing various types of needs for help among this specific population. This was a randomized clinical trial with repeated measures. A total of 199 participants were included in the data analysis. The recruitment settings included both online and offline communities/groups for Asian Americans. The needs for help were assessed using the Support Care Needs Survey-34 Short Form (SCNS) subscales measuring psychological, information, physical, support, and communication needs. Data analysis was conducted through an intent-to-treat approach. In the mixed effect models, psychological needs, information needs, physical needs, and communication needs decreased over time (P < .001). However, there were no significant group * time effects. Social support significantly mediated the effects of a technology-based intervention on psychological, information, and support needs at the pre-test and the post-1 month. This study supported significant decreases in the needs for help of Asian American breast cancer survivors by a technology-based intervention. Further studies are needed with other racial/ethnic groups of cancer survivors to confirm the efficacy of a technology-based intervention in reducing cancer survivors' needs for help during their survivorship process.

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.

Psychosocial impact of COVID-19 on caregivers and adolescents and young adult survivors of childhood cancer.

BACKGROUND: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics. PROCEDURE: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19. RESULTS: Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time. CONCLUSIONS: COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

PURPOSE: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. METHODS: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. RESULTS: An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. CONCLUSIONS: The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

Development of the perceived miscommunication measure in the pediatric intensive care unit.

PURPOSE: Miscommunication between parents and healthcare providers in the Pediatric Intensive Care Unit (PICU) can affect family-provider relationships and outcomes. This paper reports on the development and psychometric testing of a measure for parent perceived miscommunication, defined as the failure to communicate clearly as perceived by relevant stakeholders in the PICU. DESIGN AND METHODS: Miscommunication items were identified through a review of the literature with interdisciplinary experts. In a cross-sectional quantitative survey, the scale was tested with 200 parents of children discharged from a PICU at a large Northeastern Level 1 Pediatric hospital. The psychometric properties of a 6-item miscommunication measure were assessed using exploratory factor analysis and internal consistency reliability. RESULTS: Exploratory factor analysis yielded one factor explaining 66.09% of the variance. Internal consistency reliability in the PICU sample was α = 0.89. As hypothesized, there was a significant correlation between parental stress, trust, and perceived miscommunication in the PICU (p < .001). Confirmatory factor analysis supported good fit indices in testing the measurement model (χ2/df = 2.57, Goodness of Fit Index (GFI) = 0.979, Confirmatory Fit Index (CFI) =0.993 and Standardized Mean Residual (SMR) = 0.0136). CONCLUSIONS: This new six-item miscommunication measure shows promising psychometric properties including content and construct validity, which can be further tested and refined in future studies of miscommunication and outcomes in PICU. PRACTICE IMPLICATIONS: Awareness of perceived miscommunication in the PICU can benefit stakeholders within the clinical environment by recognizing the importance of clear and effective communication and how language affects the parent-child-provider relationship.

School readiness and social determinants of health: A collaboration with community teachers and parents.

PURPOSE: To explore perceptions of community dwelling caregivers of preschool-aged children regarding the influence of social determinants of health (SDOH) on children's school readiness. Parents' perspectives regarding solutions to enhance school readiness in preschool-aged children are also explored. METHODS: This study employed a qualitative, descriptive design and a community based participatory research (CBPR) approach. An academic institution collaborated with parents, teachers, and administrators at a community-based preschool learning center. Ten young-adult to middle-aged mothers and caregivers attended two separate focus groups and completed open-ended questionnaires. Inductive and deductive thematic analysis of text were employed. FINDINGS: Three themes emerged 1) Families described the vast lack of appropriate community resources and inability to access those resources that are available to prepare their children for school 2). Family members need help processing information about social resources 3) Community, individual and systemic level solutions to enhance school readiness. CONCLUSIONS: Academic-Community partnerships provide an opportunity to (1) identify solutions to remove systemic barriers that impede children's readiness for school, and (2) design interventions to support families through that process. Interventions to enhance school readiness should be family-focused and can be informed by understanding the influence of SDOH during the planning stages. SDOH create barriers and prevent parents from prioritizing their children's school, health-care, and developmental needs. PRACTICE IMPLICATIONS: Interventions to enhance school readiness should be family-based and can be informed by understanding the influence of SDOH during the planning stages. Social advocacy is also needed to enhance the ability of parents to enhance their children's school readiness.

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.

Social Determinants of Health in the Lives of Urban-Dwelling, Pregnant Puerto Rican Women and Families: Nursing Implications From a Secondary Narrative Analysis.

Urban-dwelling childbearing Puerto Rican women and families on the U.S. mainland face a myriad of social determinants that affect pregnancy and overall health outcomes. Historically, Puerto Ricans have poorest pregnancy outcomes of all Hispanic women. Acknowledgment of the cyclic, structural barriers faced by this patient population is essential to providing wholistic care. Here, we discuss family nursing implications derived from narrative analysis of a parent study that investigated ecological systems affecting 21 pregnant Puerto Rican women residing in an impoverished and crime-ridden neighborhood in Philadelphia. Content analysis of interviews revealed interwoven social determinants of health embedded in participant narratives. Furthermore, we present case vignettes based on integration of participant interviews that encapsulate the everyday experiences of these women and their families and provide clinicians with guidance and strategies for interacting with and advocating for this population.

Advancing health equity in pediatric cancer through implementation of universal family psychosocial risk screening.

BACKGROUND: Unaddressed psychosocial risks may contribute to disparities in cancer care outcomes and may be addressed by early psychosocial risk screening. In a study implementing universal family psychosocial risk screening in 18 children's cancer programs in the United States, parents, clinicians, and organizational leaders described the importance of universal screening to health equity. PURPOSES: The purposes of this study were to (1) describe the perspectives of parents, clinicians, and organizational leaders regarding the importance of universal family psychosocial risk screening in childhood cancer care and (2) identify barriers and facilitators to improving health equity and decreasing health disparities in childhood cancer through universal family psychosocial screening. METHODS: Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions. RESULTS: Theme 1: Personal (individual child and family) and systemic barriers to health care contribute to health disparities and can be identified by universal family psychosocial risk screening in pediatric cancer. Theme 2: Universal family psychosocial risk screening in pediatric cancer creates the opportunity for health equity through personalized psychosocial care. Theme 3: Recognition of health inequities and guidance from the Standards of Psychosocial Care for Children with Cancer and their Families suggest that clinicians and healthcare systems are ethically obligated to screen, provide resources, and advocate for services to meet identified needs. CONCLUSIONS: Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care. TRIAL REGISTRATION: NCT04446728 23 June 2020.

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.

The Prevalence, Intensity, Assessment, and Management of Acute Pain in Hospitalized Children in Botswana.

BACKGROUND: There is very limited clinical and observational data on acute pain experienced by children in sub-Saharan Africa. AIMS: To report the prevalence and intensity of acute pain, pain management practices, and describe associations between acute pain outcomes, children's and parents or guardian's demographics in hospitalized children aged 2 months to 13 years in Botswana. DESIGN: A descriptive correlational prospective observational study using five repeated cross-sectional samples. SETTINGS: Two referral hospitals in Botswana. PARTICIPANTS: The sample size included 308 children and 226 parents or guardians. Data were collected between November 2018 and February 2019 from children, their parents or guardians (<7 years child), and the health record for pain documentation and treatment. MEASURES: Pain was measured using Faces Pain Scale-Revised for children ≥7 years, revised Face, Legs, Activity, Cry, Consolability scale for children <7 years and numeric rating scale for parents or guardians. RESULTS: There are 1,290 data points for children of which 1,000 were children <7 years and 999 data points for parents or guardians of children <7 years were used in analysis. Fifty percent of children <7 years were in pain using the revised Face, Legs, Activity, Cry, Consolability scale, whereas parents indicated 46% to be in pain. The pain prevalence for children ≥7 years was estimated at 54%. Pain was documentated at a rate of 54 % on the health records. Acetaminophen was most common analgesic across all age groups. Univariate associations of child <7 years pain intensity was statistically significant (p ≤ .05) for weight, diagnosis, residence, and parent relationship. Parents reported pain intensity was statistically significant (p ≤ .05) for child sex, weight, diagnosis, residence, surgery, parent or guardian age and education. Only age and surgery were significant for children ≥7 years. CONCLUSIONS: Acute pain prevalence and intensity among hospitalized children in Botswana is low.

Maternal parenting stress changes over the first year of life in infants with complex cardiac defects and in healthy infants.

OBJECTIVES: Parents of infants with CHDs experience increased parenting stress compared to the general population, potentially interfering with parenting practices and bear adverse family outcomes. The changes in stress over the critical period of infancy have yet to be studied. The current study aimed to compare parenting stress changes over time between parents of infants with CHDs and parents of healthy infants during the first year of infants' life. METHODS: Data from a larger prospective cohort study were longitudinally analysed using mixed-effects multivariable regression modelling. Sample included mothers of 129 infants with complex cardiac defects and healthy infants, recruited from the cardiac ICU of a large cardiac centre and outpatient paediatric practices in Northeastern America. Outcome was measured over four visits via the Parenting Stress Index Long Form. RESULTS: Stress in the cardiac group has significantly decreased over time on the Parent Domain (p = 0.025), and stress in the healthy group has significantly increased over time on the Child Domain (p = 0.033). Parenting stress trajectories demonstrated significant differences between groups on the Parent Domain (p = 0.026) and on the Total Stress (p = 0.039) subscales. CONCLUSIONS: Parenting stress in the paediatric cardiac population changes over time and differs from stress experienced by parents of healthy infants. Findings highlight stressful periods that may be potentially risky for parents of infants with CHDs and introduce additional illness-related and psychosocial/familial aspects to the parenting stress concept.

The perceptions and practices of parents and children on acute pain management among hospitalized children in two Botswana referral hospitals.

BACKGROUND: Perceptions and practices of parties in pediatric pain are critical in children's access to adequate acute pain management. The personal factors of the child and parents have been shown to be central to pediatric pain management by the Symptom Management Theory. AIM: To describe children and parents/guardians' perceptions (knowledge, attitudes and beliefs) and practices regarding pediatric acute pain management and explain the influence of socio-cultural and environmental factors on those perceptions and practices. METHODS: Descriptive cross-sectional survey using modified versions of the American Pain Society Patient Outcome Questionnaire-Revised among parents/guardians and children. RESULTS: A convenience sample of 275 parents/guardians and 42 children aged 8 to 13 years admitted between date November 2018 and February 2019 to two Botswana tertiary hospitals completed the surveys. Forty-seven percent (n = 129) of parents/guardians reported the child to be in moderate-severe pain, while 38% (n = 16) of children reported pain as moderate-severe at the time of the survey. The children mean scores for cm-APS-POQ-R were 113(33) while parents/guardian's guardians for m-APS-POQ-R were 123(26). The subscales except for the parents/'guardians' pain interference (p = .96) were statistically significant (p = .000), showing adequate knowledge, positive attitudes and high pain intensity for both parents/guardians and children. CONCLUSION: Parent/guardians and children reported a high incidence of acute pain, were content with pain management services, and showed adequate knowledge of pediatric pain and its management. The incongruence between the intensity of pain, satisfaction on the adequacy of pain management and knowledge and attitudes demonstrated in this study need further inquiry.

A Qualitative Exploration of Sleep Habits and Intervention Needs Among Youth with Cystic Fibrosis.

Evidence suggests that individuals with Cystic Fibrosis (CF) experience difficulties with sleep architecture and hygiene, although research is limited. There are currently no behavioral sleep interventions for youth with CF. The current study used qualitative methods to understand sleep needs and concerns among youth with CF, as well as to obtain feedback about potentially useful behavioral sleep intervention strategies. Semi-structured interviews were conducted with youth with CF between the ages of 11-17 and their parents. Themes were extracted from the data and will be used to inform the development of a brief behavioral sleep intervention for youth with CF. Youth and their parents described several CF-specific sleep concerns, often related to respiratory symptoms, and a number of strategies used to manage these concerns. They also described concerns that apply to the general population, including pervasive use of technology around bedtime. Many evidence-based behavioral sleep intervention strategies are acceptable to youth with CF, although modifications are appropriate to reduce time burden and address CF-specific needs. Youth with CF experience a number of disease-specific and more generalized sleep concerns which are likely amenable to behavioral intervention. Results from this study will be used to inform the development of a brief behavioral sleep intervention for youth with CF.

Beliefs and willingness towards participating in genetic testing for depression in low-income and racial/ethnic minority mothers at-risk.

PURPOSE: To identify mothers' salient normative, behavioral and control beliefs and willingness towards participating in genetic salivary testing for depression. DESIGN: A qualitative, descriptive design was employed. 41 multi-ethnic mothers completed surveys that underwent directed content analysis according to The Theory of Planned Behavior. Percentages and frequency counts were used to categorize responses and calculate willingness. FINDINGS: Salient beliefs included: Behavioral: Finding a cure/treatment for depression (29.3 %), Normative: Family would approve (46.3 %), and Church associates would disapprove (19.5 %). CONTROL: Lacking information/explanations (34.1 %) as barriers, convenient locations (24.4 %) as facilitators. Most mothers indicated a willingness to participate (90.2 %). CONCLUSIONS: Interventions should target families, emphasize benefits, explain purposes and procedures, and use community based participatory methods.

High Depressive Symptoms, Low Family Functioning, and Low Self-Efficacy in Mothers of Children With Autism Spectrum Disorder Compared to Two Control Groups.

BACKGROUND: Parents of children with autism spectrum disorder (ASD) face unique challenges in raising their children, and they are at higher risk for depression compared to parents of children with typical development (TD) and other disabilities. AIMS: (1) To compare prevalence of depressive symptoms among mothers of children with ASD (n = 101), Down syndrome (DS, n = 101), and TD (n = 43) and (2) to describe the relationships among depression, self-efficacy, and family functioning, and describe the mediating role of maternal child care self-efficacy between depressive symptoms and child behavior. METHODS: In this cross-sectional study, mothers completed the Social Communication Questionnaire, Aberrant Behavior Checklist, Patient Health Questionnaire-9 (PHQ-9), Family Assessment Device General Functioning Scale, and Maternal Self-Efficacy Scale. RESULTS: Mothers of children with ASD had significantly higher mean PHQ-9 scores (p < .001), higher proportion of positive depression screening (p < .001), and lower family functioning (p < .001). Better family functioning is associated with less depression, better self-efficacy, and less severe ASD symptoms and behaviors. Self-efficacy mediated the relationship between depression and child ASD symptoms, and problematic behavior. CONCLUSIONS: The rates of reported history of depression and low family functioning in mothers of children with ASD are twice the rate in mothers of children with DS and TD. Maternal child care self-efficacy is protective against maternal depression, even in the presence of severe child problematic behaviors and ASD symptoms. Interventions that increase child care self-efficacy and family functioning may be helpful in addressing depression in mothers of children with ASD.

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach.

BACKGROUND: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. METHODS: We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). RESULTS: Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home." CONCLUSIONS: The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.

Mothers' and fathers' views of family management and health-related quality of life for young adult survivors of childhood brain tumors.

PURPOSE: To examine associations between fathers' and mothers' appraisals of family management and physical and emotional health-related quality of life (QOL) for young adult survivors of childhood brain tumors. DESIGN: Cross-sectional. SAMPLE: 47 mothers and 39 fathers (39-67 years old); 47 survivors (18-33 years old). METHODS: Analyses evaluated relationships among family management (Survivor's Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, View of Condition Impact, Parental Mutuality), quality of life, and parental role. FINDINGS: Except for Parental Mutuality, family management ratings were not significantly different for mothers and fathers, and parental views of survivors' physical and emotional QOL improved with better family management. Parental role moderated associations between physical and emotional QOL and Survivors' Daily Life and between emotional QOL and Condition Management Ability, Condition Management Effort, and View of Condition Impact. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Assess and address survivor QOL through family management from multiple perspectives.

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.