Old Order Amish Family Management of Children With Genetic Conditions.

Families who raise children with genetic conditions manage health care within the context of cultural communities. For Amish families, although genetic conditions are prevalent and have been well reported, few studies document family management of these conditions. This article describes Amish family management strategies in light of the Family Management Framework's contextual factors. Ethnographic data captured variations in perspectives from Amish families with children with diverse genetic conditions, Amish community members, and health care providers. Findings describe families at the center of decision making and health care management for children with genetic conditions, utilizing health care professionals and their surrounding Amish community members as resources. Amish families' management strategies lie across a spectrum from home-oriented to medical-oriented, and this spectrum is elaborated in the findings and discussion of this article.

A pilot study among older adults of the concordance between their self-reports to a health survey and spousal proxy reports on their behalf.

BACKGROUND: Proxy respondents are frequently used in health surveys, and the proxy is most often the spouse. Longstanding concerns linger, however, about the validity of using spousal proxies, especially for older adults. The purpose of this pilot study was to evaluate the concordance between self-reports and spousal proxy reports to a standard health survey in a small convenience sample of older married couples. METHODS: We used the Seniors Together in Aging Research (STAR) volunteer registry at the University of Iowa to identify and consent a cross-sectional, convenience sample of 28 married husband and wife couples. Private, personal interviews with each member of the married couple using a detailed health survey based on the 2012 Health and Retirement Study (HRS) instrument were conducted using computer assisted personal interviewing software. Within couples, each wife completed the health survey first for herself and then for her husband, and each husband completed the health survey first for himself and then for his wife. The health survey topics included health ratings, health conditions, mobility, instrumental activities of daily living (IADLs), health services use, and preventative services. Percent of agreement and prevalence and bias adjusted kappa statistics (PABAKs) were used to evaluate concordance. RESULTS: PABAK coefficients indicated moderate to excellent concordance (PABAKs >0.60) for most of the IADL, health condition, hospitalization, surgery, preventative service, and mobility questions, but only slight to fair concordance (PABAKs = -0.21 to 0.60) for health ratings, and physician and dental visits. CONCLUSIONS: These results do not allay longstanding concerns about the validity of routinely using spousal proxies in health surveys to obtain health ratings or the number of physician and dental visits among older adults. Further research is needed in a nationally representative sample of older couples in which each wife completes the health survey first for herself and then for her husband, each husband completes the health survey first for himself and then for his wife, and both spouses' Medicare claims are linked to their health survey responses to determine not just the concordance between spousal reports, but the concordance of those survey responses to the medical record.

Explanations of risk in families without identified mutations for hereditary nonpolyposis colorectal cancer.

PURPOSE: Genetic testing for hereditary forms of cancer does not always identify a causative mutation. Little is known about personal or family response to these indeterminate results when a hereditary form of cancer is suspected. This study explored thoughts about and responses to risk for hereditary nonpolyposis colorectal cancer (HNPCC) when a family member has received indeterminate genetic test results. DESIGN: In this qualitative study, data were gathered from index cases who received indeterminate genetic test results through a longitudinal study offering genetic counseling and testing for HNPCC. First-degree relatives of these indeterminate index cases were also invited to participate in the qualitative interview. METHODS: Semistructured telephone interviews were conducted with index cases and their at-risk first-degree relatives. Data were analyzed using the within- and across-case method. FINDINGS: The across-case analysis led to the development of the Awareness and Surveillance Trajectory, which describes individual interpretations of and responses to risk, based on personal and family history. Explanations of risk addressed the meaning of cancer in the family and provided context for individual interpretations. They were identified using within-case analysis and organized into a typology: innate, exceptional, idiosyncratic, and undeveloped explanations. CONCLUSIONS: Members of families without identified HNPCC mutations vary in their explanations for, interpretations of, and responses to indeterminate genetic test results. CLINICAL RELEVANCE: Explanations of family risk and interpretations of individual risk offer healthcare providers valuable information. In combination with the Awareness and Surveillance Trajectory, assessment of these beliefs can facilitate development of individualized recommendations and strategies for possible preventive actions.

Concept Analysis of Responsible Sexual Behavior in Adult Women.

The concept of responsible sexual behavior is not clearly defined as it applies to adult women who have sex with men. Responsible sexual behavior is a socially desirable and deliberate pattern of behaviors used to promote sexual health, manage risk, and foster respect for sexual partners within the context of community influences. A purposeful redefinition may be necessary to maintain a concept that is useful and effective for evaluating sexual behavior.

Collegiate Women's Definitions of Responsible Sexual Behavior.

Promoting responsible sexual behavior (RSB) is a public health strategy to decrease unplanned pregnancies and sexually transmitted infections (STIs). Current definitions of RSB in the literature have been developed by providers and policy makers; little is known about adult women's perspectives. Interventions inconsistent with women's definitions of RSB may be less effective; therefore, the purpose of this study was to understand how a sample of college women defined RSB. Data was collected from interviews as part of a mixed methods study of college women and unintended pregnancy. Women defined beingsexually responsible as self-advocating through actions that are consistent with personal goals and values while being aware of consequences that could threaten those goals or values. Actions included mindful partner selection, communicating boundaries, and preventing pregnancy. Study findings were consistent with prior research that identified managing risk and purposeful decision making as crucial to acting responsibly.

Evolutionary Concept Analysis of Reproductive Life Planning.

Reproductive life planning is recommended as an important topic of discussion at every health care interaction with women and men of reproductive age; however, this intervention has not been well studied. Therefore, the purpose of this evolutionary concept analysis was to synthesize the relevant literature, identify the essential attributes of the concept, and develop a conceptual definition to guide future research and to help implement reproductive life planning in routine health care practice.

Within-case and across-case approaches to qualitative data analysis.

The generalizations developed by qualitative researchers are embedded in the contextual richness of individual experience. Qualitative data management strategies that depend solely on coding and sorting of texts into units of like meaning can strip much of this contextual richness away. To prevent this, some authors have recommended treating individual accounts as whole cases or stories, but whole cases are difficult to compare with one another when the goal of the research is to develop generalizations that represent multiple accounts. In this article, the authors describe the ways in which three different qualitative researchers combined across-case coding and sorting with a variety of within-case data management and analysis techniques to produce contextually grounded, generalizable findings.

Internal working models of parenting: motivations of parents of infants with a congenital heart defect.

Drawing on attachment-caregiving theory, we interviewed parents of 24 infants with a complex congenital heart defect (CCHD) about parenting motivations through the first year. Using directed content analysis, 8 categories of motivations, focused either on the baby, the parent-infant relationship, family, self, or tasks were identified at 1, 4 or 6, and 12 months. A matrix of motivations by parent showed family and infant age variations. Motivations illustrated for 5 parents at 1 month suggest that specification of expectations and intentions and clustering of motivations mentioned by a parent would advance study of linkages of parenting internal working models with parenting action.

Caregiving by teens for family members with Huntington disease.

The purpose of this report is to describe caregiving by teens for family members with Huntington disease (HD). Thirty-two teens in HD families in the United States and Canada participated in focus groups from 2002 to 2005 in a study to identify concerns and strategies to manage concerns. An unexpected finding was 24 (77%) described caregiving activities. Descriptive analysis of caregiving statements identified themes of Tasks and Responsibilities, Subjective Burden, Caregiving in Context of Personal Risk for HD, and Decisional Responsibility. Teens took an active part in nearly all aspects of care with the exception of contacting health care providers and attending doctors' appointments. Some described emotional distress, and many provided care knowing they had the potential to develop HD. Teens recognized the need for decisions but lacked the authority to make these decisions. Findings may be relevant for other teens who strive to meet caregiver and student roles and developmental tasks.