April 2011
Opioids: Nonmedical Use and Abuse in Older Children
Frese W, Eiden K.
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July 2010
Validity and reliability of the N-PASS assessment tool with acute pain
Hummel P, Lawlor-Klean P, Weiss MG
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June 2010
Health care professionals' views of sharing information with families who have a child with a genetic condition
Gallo AM, Angst DB, Knafl KA, Twomey JG, Hadley E
- 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. 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.
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April 2010
Parental perceptions of the outcome and meaning of normalization
Knafl KA, Darney BG, Gallo AM, Angst DB
- This article was a secondary analysis of a study that described information management styles in families who have a child with a genetic condition. The purpose of this analysis was to identify the meaning of "normalization" for the parents. The sample was comprised of 28 families (48 parents) selected to reflect two groups: Normalization Present (NP) and Normalization Absent (NA). 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 distinctly different patterns of meaning. These patterns are discussed as an outcome of normalization. Health care providers can play a pivotal role in helping families achieve normalization by providing guidance on how to balance condition management with normal family life.
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June 2009
Information management in families who have a child with a genetic condition
Gallo AM, Knafl KA, Angst DB
In families with children with genetic conditions, information management may influence how parents view their child; their reproductive decision making; and how, when, what, and why they communicate about the condition to other family members. The purpose of this study was to identify unique patterns of information management and to explore the relationship between these patterns and individual and family characteristics and functioning. The sample was composed of 142 parents in 86 families in which a child had a genetic condition. Four distinct information management patterns were identified that varied in the parents' understanding of the genetic aspects of the condition. Statistically significant differences were found between information management patterns and parents' education, family annual income, and health insurance coverage. These information management patterns reflect how parents access, interpret, and convey genetic information and can influence the effectiveness of health care providers' interactions with these families.
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April 2009
Disclosure of genetic information within families
Gallo AM, Angst DB, Knafl KA
When someone has or is at risk for a hereditary condition, the entire family is affected. Communication within families about such risk is important—it’s 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. This article discusses the disclosure process and how nurses can facilitate family communication about genetic information.
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March 2009
Using evidence to improve care for the vulnerable neonatal population.
Lefaiver CA, Lawlor-Klean P, Welling R, Smith J, Waszak L, Micek WT
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October 2008
Gaps in pediatric clinician communication and opportunities for improvement.
Woods DM, Holl JL, Angst DB, Echiverri SC, Johnson D, Soglin DF, Srinivasan G, Amsden LB, Barnathan J, Hason T, Lamkin L, Weiss KB
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September 2008
Barriers to adherence to cystic fibrosis infection control guidelines
Garber E, Desai M, Zhou J, Alba L, Angst D, Cabana M, Saiman L; CF Infection Control Study Consortium
• In 2003, the American Cystic Fibrosis (CF) Foundation published revised, evidence-based guidelines for infection control. We sought to assess potential barriers to adherence to these guidelines experienced by health care professionals (HCPs) caring for CF patients. From April 2004 to December 2005, a knowledge, attitude, and practice survey was administered to HCPs at randomly selected CF centers in the United States to explore potential barriers to adherence to selected guidelines. The survey was completed by 528 HCPs from 25 sites (5-50 respondents per site). Only 60% of respondents were aware of the guidelines, but despite awareness, 31-47% were unfamiliar with the specific guidelines. Self-reported adherence was low; only 23-63% of respondents reported practicing the selected guidelines >75% of the time/opportunities. Lack of self-efficacy, that is, confidence in adequately performing the guidelines, was commonly experienced by respondents. Access to a copy of the guidelines was associated with increased agreement with the recommendations and increased self-efficacy. In conclusion, strategies to reduce barriers to adherence to CF infection control guidelines are needed.
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August 2008
Improving Clinical Communication and Patient Safety: Clinician-Recommended Solutions
Woods DM, Holl JL, Angst D, Echiverri SC, Johnson D, Soglin DF, Srinivasan G, Barnathan J, Amsden L, Lamkin L, Weiss KB
In: Henriksen K, Battles JB, Keyes MA, Grady ML, editors. SourceAdvances in Patient Safety: New Directions and Alternative Approaches (Vol. 3: Performance and Tools). Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Aug.
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February 2008
Parents' perspectives on having their children interviewed for research.
Hadley E, Smith CA, Gallo AM, Angst DB, Knafl K
Current laws require parental permission for children under the age of 18 to assent to participate in research. Yet, the perspectives of the parents who must give permission for their minor children to be interviewed rarely have been studied. The purpose of this analysis was to describe the perspectives of parents of children with genetic conditions on having their children interviewed. Because children's viewpoints are often different from those of their parents, obtaining viewpoints directly from children is essential.
Parents were asked two questions: (1) Would you give permission for your child to be interviewed?, and (2) If yes, what questions or topics would you be uncomfortable with and not want us to ask your child? What questions or topics would you be comfortable with us asking your child? Almost all parents (139 of 142; 98%) stated they would be willing to give permission for a future research interview with their children, and they articulated the important benefits from the interviews. Seventy percent of the parents specified stipulations on the interview. These included being certain the interview focused on age appropriate information, limiting sensitive questions such as life expectancy or reproductive implications, considering input from parents such as parental review of interview questions and possible parental presence during the interview, and providing a child-oriented environment.
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January 2008
Parents' concerns about issues related to their child's genetic condition.
Gallo AM, Hadley E, Angst DB, Knafl KA, Smith CA
Parents' concerns related to their children with genetic conditions may include any health issue, life event, or problem confronting the child or family. The purpose of this analysis was to examine parents' concerns about issues, such as privacy of information, insurance, healthcare costs, employment, and school related to their child's genetic condition. Results found that parents were less concerned with privacy and more concerned with insurance, healthcare costs, employment, and school issues.
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