Cognitive interviews assess respondents' understanding of questionnaire items and are increasingly used to improve instrument design. Although investigators have described the contributions of cognitive interviews for instrument development, few guidelines are available for analyzing data from cognitive interviews when they are used for that purpose. In this article we address the development and application of analytic strategies for summarizing, interpreting, and using data from cognitive interviews that were conducted during the process of creating a measure of parental management of childhood chronic conditions. We discuss the contribution of cognitive interviews to establishing content validity and address the importance of developing standardized guidelines for analyzing and interpreting cognitive interviews in order to maximize their usefulness for instrument development.

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.

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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.

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In the context of an inherited condition such as sickle cell disease (SCD), it is critical to understand how people with SCD or carriers (sickle cell trait [SCT]) face the challenges of making informed reproductive health decisions. The purpose of this analysis was to examine the beliefs, attitudes, and personal feelings of people with sickle cell disease or sickle cell trait related to making informed reproductive health decisions. We conducted three focus groups with a total of 15 people who had either SCD or SCT. We identified five themes: health related issues in sickle cell disease; testing for sickle cell trait; partner choice; sharing sickle cell status with partners; and reproductive options. These findings enhance understanding of the reproductive experiences in people with SCD and SCT and provide the groundwork for developing an educational intervention focused on making informed decisions about becoming a parent.

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.

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.