Denise B. Angst

Disclosure of Genetic Information Within Families

When someone has or is at risk for a hereditary condition, the entire family is affected. Communication within families about such risk is important—its central to independent decision making—but it can be difficult: whether someone can disclose such information, even to family members, depends on many factors. In order to help patients and families make decisions about disclosing information regarding genetic risk, and avoid undo distress in the process, nurses must understand the many issues that affect families when genetics is discussed.

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.

Parents' Views of their Children's Participation in Phase I Oncology Clinical Trials

Data from two descriptive studies regarding decision making in pediatric oncology were analyzed using qualitative, secondary analysis techniques to describe how parents view their childrens participation in phase I oncology clinical trials. A conceptual framework on family management styles (defining, managing, and consequence themes) was used as an organizational framework to analyze the available parental data. Parents defined or viewed their situation in relationship to their choices and expectations, health care provider expectations, childrens illness situation, and family and personal situations. These themes are contrasted to clinical, parental, and ethical perspectives from the literature to make recommendations for further research emphasizing the concerns of families.

Parents’ Perceptions of Functioning in Families Having a Child with a Genetic Condition

In a study of families having a child with a genetic condition, patterns of family functioning were identified through cluster analysis of families with two spouses. Patterns were based on both parents’ assessments of family satisfaction and hardiness, as measured respectively by the Family APGAR and Family Hardiness Index. The validity and clinical significance of the clusters were supported by demonstrating that cluster membership distinguished between parental reports of their own quality of life and their child’s functional status, as measured by the Quality of Life Index and the Functional Status II, respectively. The clusters were non-categorical in the sense that they did not depend on the type of genetic condition. These findings point to the importance of addressing family functioning as part of genetic counseling.

Health Care Professionals’ Views of Sharing Information with Families Who Have a Child with a Genetic Condition

The purpose of this study was to examine health care professionals’ views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals’ semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.

Parents' perspectives on having their children interviewed for research.

We describe parents perspectives on research interviews with their children with single gene conditions. One hundred forty-two parents were interviewed between 2002 and 2003 in a larger study using a qualitative descriptive design. Two questions from the semi-structured interview guide were used to identify parents perspectives about future interviews. Almost all of the parents said they would allow an interview with their children, but some parents specified stipulations. These stipulations included: focusing on age-appropriate information, limiting information with child, considering input from parents, and providing a child-oriented environment. Knowing this information, researchers can prepare to work more collaboratively with parents and include them more fully in the research process.