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

Parental perceptions of the outcome and meaning of normalization

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

A Survey of NAPNAP Members’ Clinical and Professional Research Priorities

Introduction The purpose of this methodological article is to describe the development, implementation, and analysis of the survey used to determine NAPNAP members\u27 ranking of research priorities, to describe the top priorities ranked by participants, and to determine if priorities differed by area of practice (primary, acute, or specialty care) or participant age. Method A cross-sectional descriptive design with an online survey was used. Completed by 324 NAPNAP members, the survey consisted of a demographic section and 90 statements in two domains: Clinical Priorities and Professional Role Priorities. Results Survey respondents strongly supported the top priorities with an average overall mean score of 4.0 or above on a 5-point Likert scale. Only three of the top 10 clinical and professional priorities differed by area of practice. No clinical priorities and only three professional priorities differed by age. Discussion The survey results were used to develop the NAPNAP Research Agenda. Both the survey results and the agenda can provide guidance for the NAPNAP Board, committees and interests groups as they develop initiatives and programs

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

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

Clonal chromosomal mosaicism and loss of chromosome Y in elderly men increase vulnerability for SARS-CoV-2

The pandemic caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2, COVID-19) had an estimated overall case fatality ratio of 1.38% (pre-vaccination), being 53% higher in males and increasing exponentially with age. Among 9578 individuals diagnosed with COVID-19 in the SCOURGE study, we found 133 cases (1.42%) with detectable clonal mosaicism for chromosome alterations (mCA) and 226 males (5.08%) with acquired loss of chromosome Y (LOY). Individuals with clonal mosaic events (mCA and/or LOY) showed a 54% increase in the risk of COVID-19 lethality. LOY is associated with transcriptomic biomarkers of immune dysfunction, pro-coagulation activity and cardiovascular risk. Interferon-induced genes involved in the initial immune response to SARS-CoV-2 are also down-regulated in LOY. Thus, mCA and LOY underlie at least part of the sex-biased severity and mortality of COVID-19 in aging patients. Given its potential therapeutic and prognostic relevance, evaluation of clonal mosaicism should be implemented as biomarker of COVID-19 severity in elderly people. Among 9578 individuals diagnosed with COVID-19 in the SCOURGE study, individuals with clonal mosaic events (clonal mosaicism for chromosome alterations and/or loss of chromosome Y) showed an increased risk of COVID-19 lethality

Health care professionals\u27 awareness of a child\u27s impending death

Health care professionals\u27 (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs\u27 initial awareness of a child\u27s impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a delicate dance of figuring out key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families

Family Caregivers Define and Manage the Nursing Home Placement Process

The nursing home placement process is complex and difficult for family caregivers. This qualitative descriptive study examines the experiences of caregivers involved in the management of care and placement of an older family member using the Family Management Style Framework. Ten caregivers were recruited from four nursing homes in the Midwest. The caregivers were interviewed shortly after placement and again 3 months post-placement. Results provide a unique understanding of care management and the nursing home placement process from the perspective of the primary family caregiver. Overall, there were similarities across the same types of caregiving dyads, for example, spousal and adult-children caregivers. Caregivers expressed the need to maintain the identity of their older family member, a familial responsibility for caregiving, and change in their family relationship over time. Appreciating caregivers’ challenges and needs gives health care professionals a better understanding for how to provide assistance for a smoother nursing home transition

The Decision-Making Process of Genetically At-Risk Couples Considering Preimplantation Genetic Diagnosis: Initial Findings from a Grounded Theory Study

Exponential growth in genomics has led to public and private initiatives worldwide that have dramatically increased the number of procreative couples who are aware of their ability to transmit genetic disorders to their future children. Understanding how couples process the meaning of being genetically at risk for their procreative life lags far behind the advances in genomic and reproductive sciences. Moreover, society, policy makers, and clinicians are not aware of the experiences and nuances involved when modern couples are faced with using Preimplantation Genetic Diagnosis (PGD). The purpose of this study was to discover the decision-making process of genetically at-risk couples as they decide whether to use PGD to prevent the transmission of known single-gene or sex-linked genetic disorders to their children. A qualitative, grounded theory design guided the study in which 22 couples (44 individual partners) from the USA, who were actively considering PGD, participated. Couples were recruited from June 2009 to May 2010 from the Internet and from a large PGD center and a patient newsletter. In-depth semi-structured interviews were completed with each individual partner within the couple dyad, separate from their respective partner. We discovered that couples move through four phases (Identify, Contemplate, Resolve, Engage) of a complex, dynamic, and iterative decision-making process where multiple, sequential decisions are made. In the Identify phase, couples acknowledge the meaning of their at-risk status. Parenthood and reproductive options are explored in the Contemplate phase, where 41% of couples remained for up to 36 months before moving into the Resolve phase. In Resolve, one of three decisions about PGD use is reached, including: Accepting, Declining, or Oscillating. Actualizing decisions occur in the Engage phase. Awareness of the decision-making process among genetically at-risk couples provides foundational work for understanding critical processes and aids in identifying important gaps for intervention and future research