A Randomized Pilot Trial of the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool) with Their Children About Their Genetic Origins.

Introduction: Parents who use donated gametes or embryos to form their families struggle with telling their children about their genetic origins. We developed the Tool to Empower Parental Telling and Talking (TELL Tool) to support parents in disclosure to their children and an eBook attention control.

Method: A randomized parallel, two-group, attention-controlled clinical pilot trial was conducted online during COVID-19.

Adherence to a reproductive health intervention for young adults with sickle cell.

Background: The CHOICES intervention is tailored specifically for young adults with sickle cell disease (SCD) or sickle cell trait (SCT). The face-to-face (F2F) delivery format is feasible with efficacy for improving knowledge about reproductive health for those with SCD or SCT.

Purpose: The purpose of the study was to compare the participant adherence to a remote online CHOICES intervention study ( N = 107) and a F2F CHOICES intervention study ( N = 234).

CHOICES for sickle cell reproductive health: A protocol of a randomized preconception intervention model for a single gene disorder.

Our long-term goal is to foster genetically informed reproductive health knowledge and behaviors among young adults with sickle cell disease (SCD) or sickle cell trait (SCT) with a web-based, tailored, multimedia intervention called CHOICES. CHOICES is designed to help young adults with SCD or SCT preconception to gain knowledge of genetic inheritance, specify their reproductive health intentions (their parenting plan), and engage in reproductive health behaviors concordant with their parenting plan. In a previous study, we found high acceptability of both the e-Book (usual care control) and CHOICES interventions.

Development of the Tool to Empower Parental Telling and Talking (TELL Tool): A digital decision aid intervention about children's origins from donated gametes or embryos.

Objective: This study aimed to create and develop a well-designed, theoretically driven, evidence-based, digital, decision Tool to Empower Parental Telling and Talking (TELL Tool) prototype.

Methods: This developmental study used an inclusive, systematic, and iterative process to formulate a prototype TELL Tool: the first digital decision aid for parents who have children 1 to 16 years of age and used donated gametes or embryos to establish their families. Recommendations from the International Patient Decision Aids Standards Collaboration and from experts in decision aid development, digital health interventions, design thinking, and instructional design guided the process.

Factors associated with young adult engagement with a web-based sickle cell reproductive health intervention.

Objective: To determine the factors predicting the engagement of young adults who have sickle cell disease (SCD) or sickle cell trait (SCT) with an online reproductive health education intervention and engagement effects on knowledge.

Methods: The cross-sectional study included 167 participants who completed the web-based intervention either face-to-face (F2F) or online delivery (OL). Measures include: time used relative to length of the intervention narration and media (engagement) and the SCKnowIQ questionnaire.

Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait.

Our study purpose was to evaluate the variation and accuracy of tailored parenting plans individually generated as a supplement to reproductive health education on the genetic inheritance of sickle cell disease or sickle cell trait. We present a secondary data analysis of experimental group data from a randomized controlled trial. Participants completed the valid and reliable Internet-based Sickle Cell Reproductive Health Knowledge Parenting Intent Questionnaire.

Alpha Test of the Donor Conception Tool to Empower Parental Telling and Talking.

Objective: To conduct an alpha test of the prototype of a digital decision aid to help parents disclose donor conception to their children, the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool).

Design: Convergent mixed-methods design.

Setting: Virtual interviews in places convenient to the participants.

Parents' experiences telling children conceived by gamete and embryo donation about their genetic origins.

Objective: To gain an in-depth understanding of parents' experiences telling children conceived by gamete and embryo donation about their genetic origins.

Design: Qualitative, descriptive.

Setting: Families' homes.

Characteristics associated with the perceived likelihood to become parents among young adults with sickle cell disease or sickle cell trait in the USA.

Individuals with sickle cell disease (SCD) and individuals with sickle cell trait (SCT) have different health trajectories, but it is unknown whether sociodemographic and clinical characteristics are associated with their likelihood to be a parent. The purpose of this study was to examine the sociodemographic and clinical characteristics associated with perceived likelihood-to-parent among a cohort of young adults with SCD or SCT in the USA. The participants were 234 young adults (82 males, 152 females) who had either SCD (n = 138) or SCT (n = 96).

Development of an Online Reproductive Health Intervention for Individuals with Sickle Cell Disease or Trait.

The purpose of this article is to describe the method of developing an internet-based reproductive options intervention to increase informed reproductive decision-making among individuals with sickle cell disease (SCD) or sickle cell trait (SCT). An interprofessional team of graphics and media specialist, nurses, physicians, and researchers collaborated to develop the intervention. Individuals from the community served as advisory board members who reviewed and advised on webpage design, content, delivery, and media.

Tracing the Use of the Family Management Framework and Measure: A Scoping Review.

This article reports the results of a scoping review of research applications of the Family Management Style Framework (FMSF) and the Family Management Measure (FaMM). We identified 32 studies based on the FMSF and 41 studies in which the FaMM was used, 17 of which were based on the FMSF. Both the framework and measure have been used by investigators in multiple countries, with most applications of the FaMM outside the United States.

The Crisis of Sickle Cell Disease in Africa from Insights into Primary Prevention in Ghana and Nigeria: Notes from the Field.

Sickle cell disease (SCD), an inherited blood disorder, impacts 2% of newborns in Nigeria and Ghana. Despite devastating health consequences, SCD prevention is not a priority in either country. This article describes our U.

Health Care Professionals' Awareness of a Child's Impending Death.

Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory.

The Experience and Health-Related Quality of Life after Haploidentical Stem Cell Transplantation for Adults with Sickle Cell Disease.

Haploidentical hematopoietic stem cell transplantation (HSCT) from partially matched first-degree relatives (e.g., parent, sibling, child) is the newest therapy available to reverse symptoms of adults with sickle cell disease.

The experience of adults with sickle cell disease and their HLA-matched adult sibling donors after allogeneic hematopoietic stem cell transplantation.

Aim: To provide a rich description and in-depth understanding of the recipient-donor allogeneic hematopoietic stem cell transplantation experience.

Background: A stem cell transplant has a high likelihood of improving symptoms of sickle cell disease in adults. While studies have reported the transplant experiences of recipients and donors with haematological malignancies, no published reports have examined the experience of both adult recipients with sickle cell disease and their donors.

Health-Related Quality of Life and Personal Life Goals of Adults With Sickle Cell Disease After Hematopoietic Stem Cell Transplantation.

Allogeneic hematopoietic stem cell transplantation (HSCT) from a human leukocyte antigen (HLA)-matched sibling donor offers a unique therapy to reverse SCD. This mixed-methods study explores recipients' perception of HSCT success, personal life goals, and associated health-related quality of life (HRQOL) more than 1 year after HSCT. Recipients completed the Short Form-36, version 1 (SF-36v1) HRQOL survey followed by a 60- to 90-min face-to-face or telephone audio-recorded interview.

Incorporating nonlinearity into mediation analyses.

Background: Mediation is an important issue considered in the behavioral, medical, and social sciences. It addresses situations where the effect of a predictor variable X on an outcome variable Y is explained to some extent by an intervening, mediator variable M. Methods for addressing mediation have been available for some time.

Toward understanding family-related characteristics of young adults with sickle-cell disease or sickle-cell trait in the USA.

Aims And Objectives: To describe the family-related characteristics of young adults with sickle-cell disease or sickle-cell trait prior to taking part in a randomised controlled trial on sickle-cell reproductive health education.

Background: There is a critical need for educational programmes that target the reproductive needs of young adults with sickle-cell disease or trait. However, little is known about the family-related characteristics (i.

Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.

Interventions to assist reproductive health decision-making in populations affected by sickle cell disease (SCD) or trait (SCT) lack proven efficacy over time. Our aim was to compare effects of CHOICES, a Web-based multimedia education program on implementing informed reproductive plans, and usual care education (e-Book) on reproductive knowledge, intention, and behavior over 24 months. We randomized 234 participants with SCD (n = 138) or SCT (n = 96) (age 18-35 years, 35 % male, 94 % African American) to CHOICES and e-Book groups.

Perception of young adults with sickle cell disease or sickle cell trait about participation in the CHOICES randomized controlled trial.

Aims: To gain an in-depth understanding of the perceptions of young adults with sickle cell disease and sickle cell trait about parenthood and participating in the CHOICES randomized controlled trial that used computer-based, educational programmes.

Background: In the USA, there is insufficient education to assure that all young adults with sickle cell disease or sickle cell trait understand genetic inheritance risks and reproductive options to make informed reproductive decisions. To address this educational need, we developed a computer-based, multimedia program (CHOICES) and reformatted usual care into a computer-based (e-Book) program.

A Case Study Approach to Nursing Home Placement: Smooth and Difficult Cases and Implications for Nursing.

Nursing home placement is one of the most challenging aspects of the caregiving journey. A case study approach was used to understand the experiences of caregivers during the first few months following nursing home placement. Two caregivers were selected from a larger qualitative descriptive study because their experiences exemplified smooth and difficult transitions for both themselves and their older family member.

Family Caregivers Define and Manage the Nursing Home Placement Process.

The nursing home placement process is complex and difficult for family caregivers. This qualitative descriptive study examines the experiences of caregivers involved in the management of care and placement of an older family member using the Family Management Style Framework. Ten caregivers were recruited from four nursing homes in the Midwest.

Children 'draw-and-tell' their knowledge of genetics.

The purpose of this study was to explore children's early understanding of basic genetic/genomic concepts using an innovative, child-sensitive approach to data collection. Exploratory, qualitative study using art-based "Draw-and-Tell Conversation" interviews with children were used. Each conversational interview was guided by two drawing completion tasks and a semi-structured interview guide.

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.