Patricia E. Hershberger

The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis: Initial findings from a grounded theory study

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.

Reproductive Decisions in People With Sickle Cell Disease or Sickle Cell Trait

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. Three focus groups were conducted with a total of 15 people who had either SCD or SCT. Five themes were identified: 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.

Recipients of Oocyte Donation: An Integrative Review

OBJECTIVE To conduct a systematic review of published research to provide a synthesis of the psychosocial characteristics of donor oocyte recipient women. DATA SOURCES The sample of published studies was selected from 1983 to September 2002. Retrieval of the studies used online computer searches from CINAHL, MEDLINE, PsycINFO, and Wilsons Social Science Abstracts using the terms reproduction techniques, in vitro fertilization, oocyte donation, oocyte recipients, and egg donation; citations from references and bibliographies of previously located articles; and two 60-minute retrieval sessions with a librarian specializing in health science literature. STUDY SELECTION The majority of studies retrieved were completed in the natural sciences. The final sample resulted in 16 studies. DATA EXTRACTION Each study was read and the data were extracted using a survey instrument developed by the investigator. DATA SYNTHESIS Multiple methodologies were used in the sample; most were exploratory, retrospective, and descriptive studies. Thus, the data were analyzed using a qualitative discursive approach. A total of 827 donor oocyte recipient women participated in the studies. CONCLUSIONS Published research investigating the psychosocial characteristics of donor recipient women was categorized into six focused areas: motivation; desired donor characteristics; selection of a known versus an anonymous donor; demographic, educational, and psychosocial profiles; disclosure of the method of conception to family members, friends, and the resulting child; and the relationship between the oocyte recipient and her resulting offspring. Research involving the psychosocial aspects of donor oocyte recipient women is in the infancy stage.

A Qualitative Inquiry of the Financial Concerns of Couples Opting to Use Preimplantation Genetic Diagnosis to Prevent the Transmission of Known Genetic Disorders

Preimplantation genetic diagnosis (PGD) is an innovative prenatal testing option because the determination of whether a genetic disorder or chromosomal abnormality is evident occurs prior to pregnancy. However, PGD is not covered financially under the majority of private and public health insurance institutions in the United States, leaving couples to decide whether PGD is financially feasible. The aim of this qualitative study was to understand the role of finances in the decision-making process among couples who were actively considering PGD. In-depth, semi-structured interviews were completed with 18 genetic high-risk couples (36 individual partners). Grounded theory guided the analysis, whereby three themes emerged: 1) Cost is salient, 2) Emotions surrounding affordability, and 3) Financial burden and sacrifice. Ultimately, couples determined that the opportunity to avoid passing on a genetic disorder to a future child was paramount to the cost of PGD, but expressed financial concerns and recognized financial access as a major barrier to PGD utilization.

Toward theoretical understanding of the fertility preservation decision-making process: Examining information processing among young women with cancer

Background: Young women with cancer now face the complex decision about whether to undergo fertility preservation. Yet little is known about how these women process information involved in making this decision. Objective: The purpose of this article is to expand theoretical understanding of the decision-making process by examining aspects of information processing among young women diagnosed with cancer. Methods: Using a grounded theory approach, 27 women with cancer participated in individual, semistructured interviews. Data were coded and analyzed using constant-comparison techniques that were guided by 5 dimensions within the Contemplate phase of the decision-making process framework. Results: In the first dimension, young women acquired information primarily from clinicians and Internet sources. Experiential information, often obtained from peers, occurred in the second dimension. Preferences and values were constructed in the third dimension as women acquired factual, moral, and ethical information. Women desired tailored, personalized information that was specific to their situation in the fourth dimension; however, women struggled with communicating these needs to clinicians. In the fifth dimension, women offered detailed descriptions of clinician behaviors that enhance or impede decisional debriefing. Conclusion: Better understanding of theoretical underpinnings surrounding women’s information processes can facilitate decision support and improve clinical care.

Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects.

Background:People with sickle cell disease (SCD) or sickle cell trait (SCT) may not have information about genetic inheritance needed for making informed reproductive health decisions. CHOICES is a Web-based, multimedia educational intervention that provides information about reproductive options and consequences to help those with SCD or SCT identify and implement an informed parenting plan. Efficacy of CHOICES compared with usual care must be evaluated. Objective:The purpose was to compare immediate posttest effects of CHOICES versus an attention-control usual care intervention (e-Book) on SCD-/SCT-related reproductive health knowledge, intention, and behavior. Methods:In a randomized controlled study, we recruited subjects with SCD/SCT from clinics, community settings, and online networks with data collected at sites convenient to the 234 subjects with SCD (n = 136) or SCT (n = 98). Their ages ranged from 18 to 35 years; 65% were women, and 94% were African American. Subjects completed a measure of sickle cell reproductive knowledge, intention, and behavior before and immediately after the intervention. Results:Compared with the e-Book group, the CHOICES group had significantly higher average knowledge scores and probability of reporting a parenting plan to avoid SCD or SCD and SCT when pretest scores were controlled. Effects on intention and planned behavior were not significant. The CHOICES group showed significant change in their intention and planned behavior, whereas the e-Book group did not show significant change in their intention, but their planned behavior differed significantly. Discussion:Initial efficacy findings are encouraging but warrant planned booster sessions and outcome follow-ups to determine sustained intervention efficacy on reproductive health knowledge, intention, and actual behavior of persons with SCD/SCT.

Development of an informational web site for recruiting research participants: process, implementation, and evaluation.

&NA; Internet‐based research is increasing, yet there is little known about recruitment approaches that target the Internet. Investigators have been slow to discuss how to plan, develop, and enhance recruitment using the Internet when well‐concealed or disparate populations, sensitive topics, or qualitative methods are interspersed into the aims of the study. The twofold purpose of this article was to (1) highlight the major steps and strategies undertaken to develop and implement an innovative Web site for recruiting high‐genetic‐risk couples who were considering preimplantation genetic diagnosis use, and (2) present the recruitment results and lessons learned based on enrollment, self‐evaluation, and descriptive data. The Web site was developed using a five‐step process designed by the investigators. A significant step in the process was determining the Web site objectives, which were enacted through contextual and design decisions, and also by incorporating a brief video and study logo into the Web site. The recruitment results indicate that, of the 22 participant couples, ˜82% were recruited via the Internet versus traditional recruitment approaches (ie, clinics, newsletters) and that the majority of couples viewed the Web site prior to enrolling in the study. In conclusion, developing a Web site using the five‐step process can facilitate recruitment.

Evaluation of the SCKnowIQ tool and reproductive CHOICES intervention among young adults with sickle cell disease or sickle cell trait.

The study purpose was to evaluate a computer-based questionnaire (SCKnowIQ) and CHOICES educational intervention using cognitive interviewing with childbearing-aged people with sickle cell disease (SCD) or trait (SCT). Ten control group participants completed the SCKnowIQ twice. Ten intervention group participants completed the SCKnowIQ before and after the CHOICES intervention. Most participants found the questionnaire items appropriate and responded to items as the investigators intended. Participants’ responses indicated that the information on SCD and SCT and reproductive options was understandable, balanced, important, and new to some. Internal consistency and test–retest reliability were adequate (.47 to .87) for 4 of the 6 scales, with significant within-group changes in knowledge scores for the intervention group but not for the control group. Findings show evidence for potential efficacy of the intervention, but proof of efficacy requires a larger randomized study.

Development and Validation of a Virtual Human Vignette to Compare Nurses’ Assessment and Intervention Choices for Pain in Critically Ill Children

Introduction As virtual experiences are increasingly used in health care training and research, it is important that adequate processes are applied for developing valid scenarios. We describe the development and validation of virtual human (VH) vignettes, computer-generated scenarios with animated patients and clinical information, for a mixed-methods study regarding nurses’ assessment and intervention choices for critically ill children’s pain. Methods We followed the case development and review process for high-fidelity simulation case scenarios, including the use of validated written vignettes and content experts. Forty nurses described their pain assessment and intervention choices for the newly derived VH vignettes and completed a pain questionnaire. Nurses’ reports of VH vignette consistency with their professional experience and recognition of VH facial expressions were evaluated to establish face validity. Their pain ratings for the VH and written (questionnaire) vignettes were evaluated for convergent validity. Qualitative content analysis, descriptive statistics, correlations, and paired t tests were used. Results Most nurses (68.4%) supported vignette consistency with their professional experience. Facial expression recognition was 98.4%. Smiling children’s pain was rated significantly lower than grimacing children in both VH and written vignettes. Pain was rated significantly lower for grimacing children in the VH vignettes than the written vignettes. Virtual human vignette pain ratings were strongly correlated with their written counterparts. Conclusions This process was effective for developing VH vignettes that demonstrated good face validity with participants and convergent validity with written vignettes. Virtual human vignettes may be useful in studying the influence of facial actions on nurses’ choices for children’s pain assessment and treatment.

Evidence-Based Care for Couples With Infertility

When couples cannot achieve pregnancy, they often seek health care from medical and nursing specialists. The care the couple receives begins with a thorough assessment to determine the possible cause of infertility and to plan appropriate care to ensure the best chance for the couple to have a biological child. In this article, we provide an overview of the etiology and evaluation of infertility, the various treatment options available, and the appropriate clinical implications.