Martha Driessnack

Draw-and-Tell Conversations With Children About Fear

As the demand to include children in research increases, researchers are discovering that few methods exist that are specifically designed with children in mind. In this article, the author introduces the draw-and-tell conversation as a child-centered and child-directed approach to data collection and illustrates its use in a qualitative study of children’s fear experiences. Twenty-two children, ages 7 and 8 years, participated. Sequential mixed qualitative analyses suggest that children’s draw-and-tell conversations provide new insight into how children describe and experience fear and highlight the unique nature of information accessed when using this approach.

An overview of research designs relevant to nursing: part 1: quantitative research designs

Esta serie de tres artigos apresenta uma breve revisao dos desenhos de pesquisa relevantes para a enfermagem. Neste primeiro artigo da serie sao revistos os desenhos de pesquisa quantitativa mais utilizados atualmente nas investigacoes desta area de conhecimento. Sao apontados os tipos de estrategia que tais desenhos utilizam para gerar e refinar conhecimento e sao descritos os desenhos classificados como nao-experimentais e experimentais. A guisa de conclusao ressalta-se a importância da pratica baseada em evidencia para a profissao, de modo que o cuidado de enfermagem seja determinado por resultados de pesquisa solida e nao por preferencias clinicas ou por tradicao.This three part series of articles provides a brief overview of relevant research designs in nursing. The first article in the series presents the most frequently used quantitative research designs. Strategies for non-experimental and experimental research designs used to generate and refine nursing knowledge are described. In addition, the importance of quantitative designs and the role they play in developing evidence-based practice are discussed. Nursing care needs to be determined by the results of sound research rather than by clinical preferences or tradition.Esta serie de tres articulos muestra una breve revision de los disenos de investigacion resaltantes para Enfermeria. En el primer articulo de la serie son revisados los disenos de investigacion cuantitativa mas utilizados en la actualidad para las investigaciones en esta area del conocimiento. Son indicados los tipos de estrategias que tales disenos utilizan para generar y refinar conocimiento siendo descritos los disenos clasificados como no experimentales y experimentales. A modo de conclusion se resalta sobre la importancia de la practica basada en evidencia para la profesion, de forma que el cuidado de enfermeria sea determinado por resultados de investigacion solida y no de acuerdo con preferencias clinicas o tradicionales.

Revisão dos desenhos de pesquisa relevantes para enfermagem: Parte 1: desenhos de pesquisa quantitativa

This second article of the series “An Overview of Research Designs Relevant to Nursing” presents qualitative research designs. Phenomenological, ground theory, ethnography, narrative inquiry, and other related qualitative-related research methodologies are described. In addition, the importance of qualitative research as groundwork for quantitative studies is discussed. This link between qualitative and quantitative research is fundamental to promote evidence-based nursing practice.

‘Information is information’: a public perspective on incidental findings in clinical and research genome-based testing

The potential for genomic incidental findings is increasing with the use of genome‐based testing. At the same time approaches to clinical decision making are shifting to shared decision‐making models involving both the healthcare community and the public. The publics voice has been nearly absent in discussions on managing incidental findings. We conducted nine focus groups and nine interviews (n = 63) with a broad cross‐section of lay public groups to elucidate public viewpoints on incidental findings that could occur as a result of genome‐based testing in clinical and research situations. Data were analyzed using qualitative content analysis. Participants wanted incidental findings disclosed to them whether or not these were clinical or research findings. Participants used different terms to define and describe incidental findings; they wanted to know that incidental findings are possible and be given a choice to learn about them. Personal utility was an important reason for disclosure, and participants believed that managing information is a shared responsibility between professionals and themselves. Broad public input is needed in order to understand and incorporate the publics perspective on management of incidental findings as disclosure guidelines, and policies are developed in clinical and research settings.

Experiences of teens living in the shadow of Huntington Disease

Research on families with Huntington Disease (HD) has primarily focused on adult decision-making surrounding predictive genetic testing and caregiver stress. Little is known about the experiences of teens living in these families. This qualitative study explored the experiences of 32 teens living in families with HD. Six focus groups were conducted across the U.S. and Canada. Data were analyzed using descriptive qualitative analysis. Huntington disease appeared to cast a shadow over the experiences described by teens. Four themes were identified: watching and waiting; alone in the midst of others; family life is kind of hard; and having to be like an adult. These experiences highlight the need for genetic counselors, health care providers, and school personnel to be aware of issues facing teens living in families with HD. Recognizing patterns of teen experiences may help health care providers develop strategies to support coping by teens in HD families.

Informed consent and genomic incidental findings: IRB chair perspectives

It is unclear how genomic incidental finding (GIF) prospects should be addressed in informed consent processes. An exploratory study on this topic was conducted with 34 purposively sampled Chairs of institutional review boards (IRBs) at centers conducting genome-wide association studies. Most Chairs (96%) reported no knowledge of local IRB requirements regarding GIFs and informed consent. Chairs suggested consent processes should address the prospect of, and study disclosure policy on, GIFs; GIF management and follow-up; potential clinical significance of GIFs; potential risks of GIF disclosure; an opportunity for participants to opt out of GIF disclosure; and duration of the researchers duty to disclose GIFs. Chairs were concerned about participant disclosure preferences changing over time; inherent limitations in determining the scope and accuracy of claims about GIFs; and making consent processes longer and more complex. IRB Chair and other stakeholder perspectives can help advance informed consent efforts to accommodate GIF prospects.

A Closer Look at the Recommended Criteria for Disclosing Genetic Results: Perspectives of Medical Genetic Specialists, Genomic Researchers, and Institutional Review Board Chairs

Next generation sequencing offers benefit of improved health through knowledge, but comes with challenges, such as inevitable incidental findings (IFs). The applicability of recommended criteria for disclosure of individual results when applied to disclosure of IFs is not well known. The purpose of this study was to examine how medical genetic specialists, genomic researchers, and Institutional Review Board (IRB) chairs perceive the importance of recommended criteria when applied to genetic/genomic IFs. We conducted telephone interviews with medical genetic specialists (genetic counselors, genetic nurses, medical geneticists, laboratory professionals), genomic researchers, and IRB chairs (N = 103). Respondents rated and discussed the importance of nine recommended criteria regarding disclosure of genetic/genomic IFs. Stakeholders agreed the most important criteria for disclosure were: (1) the IF points to a life-threatening condition; (2) there is a treatment; (3) individuals indicate in writing they wanted to be informed of IFs. Criteria rated less important were: analytic validity, high penetrance, association with a young age of onset and relative risk more than 2.0. Respondents indicated that some technical criteria were confusing, and in need of context. Our findings suggest that development of guidelines regarding management of IF include multiple stakeholders’ perspectives and be based on a common language.

Arts-based data collection techniques used in child research.

PURPOSE The purpose of this study was to identify the different arts-based techniques being used in health-related research with children. DESIGN AND METHODS A systematic survey of literature was conducted. RESULTS Two hundred and ten articles were initially identified and reviewed. Of these, 116 met inclusion criteria of arts-based techniques in research with children 7-12 years of age. The different categories of techniques identified included (a) drawings, (b) photographs, (c) graphics, and (d) artifacts. Only 19% of the studies were health related. Further, 79% were conducted outside the United States, revealing that arts-based techniques appear to be underused by nurses and other healthcare researchers, especially in the United States. PRACTICE IMPLICATIONS To ensure that children actively engage in research involving them, nurses can familiarize themselves with and advocate for the use of arts-based techniques.

Researcher and Institutional Review Board Chair Perspectives on Incidental Findings in Genomic Research

AIMS Genomic research can produce findings unrelated to a studys aims. The purpose of this study was to examine researcher and Institutional Review Board (IRB) chair perspectives on genomic incidental findings (GIFs). METHODS Nineteen genomic researchers and 34 IRB chairs from 42 institutions participated in semi-structured telephone interviews. Researchers and chairs described GIFs within their respective roles. Few had direct experience with disclosure of GIFs. Researchers favored policies where a case by case determination regarding whether GIF disclosure would be offered after discovery, whereas IRB chairs preferred policies where procedures for disclosure would be determined prior to approval of the research. CONCLUSIONS Researcher and IRB chair perspectives on management of GIFs overlap, but each group provides a unique perspective on decisions regarding disclosure of GIFs in research. Engagement of both groups is essential in efforts to provide guidance for researchers and IRBs regarding disclosure of GIFs in research.

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

Although there are numerous position papers on the issues and challenges surrounding disclosure of incidental genomic findings involving children, there is very little research. To fill this gap, the purpose of this study was to explore the perspectives of multiple professional (N = 103) and public (N = 63) stakeholders using both interviews and focus groups. Using qualitative analysis, we identified one overarching theme, “Its hard for us; its hard for them,” and three subthemes/questions: “What to disclose?,” “Who gets the information?,” and “What happens later?” Perspectives differed between professional (Institutional Review Board chairs, clinicians, and researchers) and public stakeholders. While professionals focused on the complexities of what to disclose, the lay public stated that parents should have all information laid out for them. Professionals pondered multiple parent and child situations, while the public identified parents as informational gatekeepers who know their children best. Professionals described the potential requirement for follow-up over time as a logistical “nightmare,” while the public believed that parents have the responsibility for managing their childrens health information over time. However, the parent role as gatekeeper was seen as time limited and in need of professional support and backup. Our findings present a case for needed dialogue around what we propose as an “ethically important moment,” with the goal of protecting and respecting the viewpoints of all stakeholders when policies regarding children are developed.