Children with chronic conditions: perspectives on condition management

This qualitative study described children's (8-13 years old) perspectives of their chronic health conditions (e.g., asthma, diabetes, cystic fibrosis): how they perceived their condition, its management, and its implications for their future. The study used the family management style framework (FMSF) to examine child perspectives on the joint venture of condition management between the child and family. Children within this age group viewed condition management in ways similar to their parents and have developed their own routines around condition management. Future studies of this phenomenon comparing child and parent perspectives would further our understanding of the influence of family management

Community Violence Exposure and Positive Youth Development in Urban Youth

Youth in urban environments are exposed to community violence, yet some do well and continue on a positive developmental trajectory. This study investigated the relationships between lifetime community violence exposure (including total, hearing about, witnessing, and victimization), family functioning, and positive youth development (PYD) among 110 urban youth ages 10-16 years (54% female) using a paper and pen self-report survey. This cross-sectional study was part of an interdisciplinary community-based participatory research effort in West/Southwest Philadelphia. Almost 97% of the sample reported some type of community violence exposure. Controlling for presence of mother in the home and presence of father in the home, separate linear regression models for PYD by each type of community violence exposure indicated that gender and family functioning were significantly associated with PYD. None of the types of community violence exposure were significant in the models. Significant interactions between gender and presence of mother in the home and gender and family functioning helped better explain these relationships for some of the types of community violence exposure. Presence of mother was associated with higher PYD for girls, but not for boys. Boys with poor family functioning had lower PYD than girls with poor family functioning. This study helps to better delineate relationships between CVE and PYD by adding new knowledge to the literature on the role of family functioning. Points of intervention should focus on families, with attention to parental figures in the home and overall family functioning

Journey Towards Recovery Following Physical Trauma

Convalescence and recovery following illness are of central importance to nursing. These themes have been explored increasingly in the literature. The focus, however, has been primarily on the process of integrating chronic illness into one’s life. Recovery from physical injury is rarely addressed. A body of work focusing on physical trauma demonstrates that recovery is often not complete after injuries that have not been viewed as disabling. To illuminate understanding of recovery following physical trauma, the purpose of our 1997 study was to describe more thoroughly the nature of recovery. A total of 63 adults, in a convenience sample, who survived serious physical trauma, were interviewed 2·5 years after injury using an open-ended semistructured interview guide. Three themes were identified: event, fallout, and moving-on. These themes provided the organizing structure for exploring the journey to recovery. This journey, as disclosed by the seriously injured, does not necessarily correspond with the views of most trauma clinicians. Traumatic events create a line of demarcation, separating lives into before and after. The event becomes the starting point of a journey to resume one’s life. The event itself is more than the trauma; it is the perceptual and contextual experience that needs to be incorporated into a person’s essence. Fallout from the injury is multifaceted and includes physical, psychological, social, and spiritual dimensions. Moving-on in this journey is nonlinear as survivors recognize their lives are forever different. The survivors’ accounts suggest that nurses should carefully consider the question, ‘What is successful recovery?

The Interplay of Concepts, Data, and Methods in the Development of the Family Management Style Framework

This article describes the process of development of the Family Management Style Framework. The FMSF is a conceptual representation of family response to a child's condition that takes into account the views of individual family members to conceptualize overall patterns of family response. The FMSF provides a more complete understanding of family life in the context of a child's chronic condition and directs researchers’ and clinicians’ efforts to assess family response, especially with regard to how condition management is incorporated into everyday family life. Framework development has included conceptual analyses of the literature, empirical studies of family management of childhood illness, and methodological work directed to treating the family as a unit of study and analysis. This article highlights how the interplay of conceptual, empirical, and methodological work advances knowledge development and presents lessons learned over the course of developing the FMSF

Assessment of the Psychometric Properties of the Family Management Measure

Objective This paper reports development of the Family Management Measure (FaMM) of parental perceptions of family management of chronic conditions. Method By telephone interview, 579 parents of children age 3 to 19 with a chronic condition (349 partnered mothers, 165 partners, 65 single mothers) completed the FaMM and measures of child functional status and behavioral problems and family functioning. Analyses addressed reliability, factor structure, and construct validity. Results Exploratory factor analysis yielded six scales: Child's Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, Parental Mutuality, and View of Condition Impact. Internal consistency reliability ranged from .72 to .91, and test-retest reliability from .71 to .94. Construct validity was supported by significant correlations in hypothesized directions between FaMM scales and established measures. Conclusion Results support FaMM's; reliability and validity, indicating it performs in a theoretically meaningful way and taps distinct aspects of family response to childhood chronic conditions

Patterns of Family Management of Childhood Chronic Conditions and Their Relationship to Child and Family Functioning

Understanding patterns of family response to childhood chronic conditions based on a configuration of multiple variables or qualitative themes provides a comprehensive understanding of health-related challenges and their influence on family and child functioning. In this paper, we used the six scales comprising the Family Management Measure (FaMM) in a cluster analysis to describe a typology of family management and data from other measures of child and family functioning to validate and explain those clusters. The sample of 575 parents from 414 families of children who had diverse chronic conditions endorsed four patterns of response (Family Focused, Somewhat Family Focused, Somewhat Condition Focused, Condition Focused). We also considered the extent to which couples had shared or discrepant views of family management. Most (57%) families were in either the Family Focused or Somewhat Family Focused pattern. Single mothers were significantly less likely to be in the two patterns reflecting greater ease in family management and significantly more likely to be in the two patterns reflecting more difficulty. Patterns of family management were related significantly to family and child functioning, with families in the Family Focused and Somewhat Family Focused patterns demonstrating significantly better family and child functioning than families in the other two patterns

Implementation of family psychosocial risk assessment in pediatric cancer with the Psychosocial Assessment Tool (PAT): study protocol for a cluster-randomized comparative effectiveness trial

BACKGROUND: Childhood cancer affects and is affected by multiple levels of the social ecology, including social and relational determinants of health (e.g., economic stability, housing, childcare, healthcare access, child and family problems). The 2015 Standards of Psychosocial Care in Pediatric Cancer outline optimal psychosocial care sensitive to these ecological factors, starting with assessment of psychosocial healthcare needs to promote medical and psychosocial outcomes across all children with cancer. To address the first standard of family psychosocial assessment, the Psychosocial Assessment Tool (PAT) is a validated screener ready for broad implementation. METHOD: The PAT will be implemented across a national sample of 18 pediatric cancer programs ranging in size (annual new patients) in a mixed methods, comparative effectiveness study, guided by the Interactive Systems Framework for Dissemination and Implementation, comparing two implementation strategies. It is hypothesized that implementation will be more successful at the patient/family, provider, and institutional level when training (strategy I) is combined with implementation expanded resources (strategy II). There are three aims: (1) Refine the two implementation strategies using semi-structured qualitative interviews with 19 stakeholders including parent advocates, providers, pediatric oncology organization representatives, healthcare industry leaders; (2) Compare the two theoretically based and empirically informed strategies to implement the PAT in English and Spanish using a cluster-randomized controlled trial across 18 sites. Stratified by size, sites will be randomized to cohort (3) and strategy (2). Outcomes include adoption and penetration of screening (patient/family), staff job satisfaction/burnout (provider), and cost-effective use of resources consistent with family risk (institution); (3) Based on the results of the trial and feedback from the first and second aim, we will develop and disseminate a web-based PAT Implementation Toolkit. DISCUSSION: Use of the PAT across children\u27s cancer programs nationally can achieve the assessment standard and inform equitable delivery of psychosocial care matched to family need for all patients. TRIAL REGISTRATION: ClinicalTrials.gov , NCT04446728 , registered 23 June 2020

Scale development based on likelihood cross-validation

The use of likelihood cross-validation for guiding the scale development process is formulated and demonstrated, including choosing the number of factors, assessing item-factor allocations suggested by rotations, adjusting those allocations, reducing the number of factors, removing items, and assessing the applicability of scales to subjects other than those for whom it was originally developed. An example analysis is presented on the development of scales to measure how parents caring for a child with a chronic condition view their family's management of that condition

Analysis of Cross-Sectional Univariate Measurements for Family Dyads Using Linear Mixed Modeling

Outcome measurements from members of the same family are likely correlated. Such intrafamilial correlation (IFC) is an important dimension of the family as a unit but is not always accounted for in analyses of family data. This article demonstrates the use of linear mixed modeling to account for IFC in the important special case of univariate measurements for family dyads collected at a single point in time. Example analyses of data from partnered parents having a child with a chronic condition on their child's adaptation to the condition and on the family's general functioning and management of the condition are provided. Analyses of this kind are reasonably straightforward to generate with popular statistical tools. Thus, it is recommended that IFC be reported as standard practice reflecting the fact that a family dyad is more than just the aggregate of two individuals. Moreover, not accounting for IFC can affect the conclusions

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