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Browsing by Author "Crane, Stacey"
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Item Beyond Data Capture: Using REDCap™ to Facilitate Web-Based Therapeutic Intervention Research(Wolters Kluwer, 2019-05) Crane, Stacey; Comer, Robert Skipworth; Arenson, Andrew D.; Draucker, Claire; School of NursingBackground Limited guidelines to assist nurse researchers who use web-based interventions are available. Nurses must develop the supporting technology enabling participants to complete study activities and collected data while maintaining data security and participant confidentiality. Objectives To describe how the authors used advanced Research Electronic Data Capture (REDCapTM) functionality to support the data management infrastructure of an interactive, web-based therapeutic intervention. Methods The data management infrastructure for the WISER intervention pilot study consisted of two components: a website for presentation of the intervention and participant account management and a REDCap project for data capture and storage. REDCap application programming interface (API) connected these two components using HTML links and data exchanges. Results We completed an initial pilot study of WISER with 14 participants using the REDCap-based infrastructure. Minimal technical difficulties were encountered. Discussion REDCap is cost-effective, readily available, and through its advanced functionality is able to facilitate confidential, secure interactions with participants, robust data management, and seamless participant progression in web-based intervention research.Item Designing an Internet Intervention for Emerging Adults Who Experience Troubled Relationships(Elsevier, 2017-06) Burke Draucker, Claire; Martsolf, Donna S.; Crane, Stacey; Romero, Lindsey; Leigh McCord, Allison; School of NursingThis article describes how the Internet Intervention Model (IIM) was used as an organizing framework to design a theoretically based Internet intervention for emerging adults who experience troubled intimate partner relationships. In the design process, the team addressed six fundamental questions related to the several components of the IIM. Decisions made regarding the design of the intervention based on the six questions are described. We focus in particular on how the intervention is based on the Theory of Emerging Adulthood and the Theory of Narrative Identity.Item Engaging Clinical Nurses in Research: Nurses’ Experiences Delivering a Communication Intervention in a Behavioral Oncology Clinical Trial(Lippincott, Williams & Wilkins, 2020-04-01) Landon, Leslie; Crane, Stacey; Nance, Stacy; Stegenga, Kristin; Cherven, Brooke; Perez Prado, Luz N.; Butrum, Karen Dawn; Beacham, Barbara; Haase, Joan E.; School of NursingDespite the recognized need for clinical nurses to engage in the conduct of research, little is known about their research experiences. This article describes the experiences of nurses who delivered the communication intervention in a behavioral oncology clinical trial for parents of adolescents and young adults (AYAs) with cancer. A qualitative thematic analysis was conducted of nurse interveners’ (NIs’) reflections on their experiences delivering the communication intervention. Ten data-generating questions were developed to guide NIs’ reflections. Twelve NIs responded via verbal discussions. Six of these also provided written responses. Overall, nurses’ experiences as interveners were powerful and positive, and included time and space to be fully present with patients and families. NIs identified barriers to their involvement in research related to time constraints, administrative support, physical space to privately conduct the intervention, and difficulties maintaining expertise with the intervention. The importance of ongoing collaboration between nurses, unit staff, leaders, and study teams was corroborated. An unexpected finding was the importance of Reflective Clinical Research.Item A feasibility test of an online intervention to prevention dating violence in emerging adults(Elsevier:, 2019-02) Burke Draucker, Claire; Martsolf, Donna S.; Crane, Stacey; McCord, Allison L.; Romero, Lindsey; Al-Khattab, Halima A.; School of NursingDating violence in emerging adults is a significant problem and few prevention programs based on the developmental needs of this age group have been developed. Our research team developed an online dating violence prevention program called WISER (Writing to Improve Self-in-Relationships) for emerging adults. The program is based on narrative therapy principles and uses structured writing techniques. A single group pre-post feasibility test of WISER was conducted with 14 college women. WISER was demonstrated to be feasible and acceptable and to show promise as an effective program to decrease dating violence in this population.Item Improving recruitment and retention of adolescents and young adults with cancer in randomized controlled clinical trials(De Gruyter, 2019-04-11) Docherty, Sharron L.; Crane, Stacey; Haase, Joan E.; Robb, Sheri L.; School of NursingParticipation of adolescents and young adults (AYAs) with cancer in randomized clinical trials (RCTs) is necessary to advance treatments and psychosocial programs. Exploring AYAs experiences in an RCT will inform strategies to support recruitment and retention. A qualitative design was used to study the experiences of 13 AYAs in the Stories and Music for Adolescent and Young Adult Resilience during Transplant I (SMART I) trial. Key themes included: Weighing the Pros and Cons; Randomization Preferences; Completing Measures; and Worthwhile Experience. The experiences of AYAs during RCTs can bring insights that inform the design and management of AYA trials. Strategies include improving assent/consent processes, design of electronic interfaces and encouraging researcher flexibility.Item Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste"(Sage, 2019-04) Crane, Stacey; Haase, Joan E.; Hickman, Susan E.; School of NursingChildren with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents' lived experiences of their child's participation in a pediatric oncology P1T. Study findings were that parents' experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents' sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child's P1T participation and would recommend P1Ts to other parents of children with cancer.Item Parents' Insights into Pediatric Oncology Phase I Clinical Trials: Experiences from Their Child's Participation(Elsevier, 2021) Crane, Stacey; Croop, James M.; Lee, Jill; Walski, Jamie; Haase, Joan; School of NursingObjectives: Phase 1 clinical trials are essential in the development of novel therapies for childhood cancers. Children with cancer can participate in phase 1 clinical trials when no known curative therapy remains. Understanding the experiences of children and their families in these clinical trials can help ensure that participation supports the children's and parents' well-being. This article explores the specific aspects of pediatric oncology phase 1 trials that parents found particularly challenging. Data sources: This qualitative, empirical phenomenology study considered 11 parents' experiences during the time their child with cancer participated in a phase 1 clinical trial. The primary study results were previously reported. This article reports parents' insights into the processes and procedures that occurred as part of participation in a pediatric oncology phase 1 trial. Conclusion: Parents' experiences during the phase 1 clinical trials were primarily positive. However, data analysis revealed five aspects of these trials that were challenging for families: learning about clinical trials, being referred to another institution, research-only procedures, adhering to trial requirements, and oral medications. Implications for nursing practice: Although experiences during phase 1 clinical trials were positive overall, opportunities to enhance children's and parents' experiences warrant attention. Enhancing the education provided to families during recruitment and minimizing the logistical burdens associated with trial requirements through care coordination may alleviate challenges experienced by children and parents.Item Understanding Ethical Issues of Research Participation from the Perspective of Participating Children and Adolescents: A Systematic Review(Wiley, 2017-06) Crane, Stacey; Broome, Marion E.; School of NursingBackground The past twenty years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children’s and adolescents’ experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. Aims The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives. Methods This systematic review was conducted per the Long et al. framework by means of an iterative searching process. Using the key words ‘research ethics’ and ‘child or pediatric or adolescent’, PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the original searches were: English language, year of publication between 2003–2014, humans, abstract available, and age birth–18 years. Findings Twenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals. Discussion Even young children demonstrated the ability to understand essential elements of research, although there is variability in children’s level of understanding. Trust was a significant contributing factor to children’s and adolescents’ participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed. Linking Evidence to Action This systematic review highlights the importance of including the perspectives of children and adolescents and provides researchers and nurse clinicians with best practices for involving children in research.Item Understanding Treatment Burden and Quality of Life Impact of Participating in an Early-Phase Pediatric Oncology Clinical Trial: A Pilot Study(Sage, 2018-01) Crane, Stacey; Backus, Lori; Stockman, Beth; Carpenter, Janet S.; Lin, Li; Haase, Joan E.; School of NursingPURPOSE: Early-phase clinical trials (EPTs) have led to new, more effective treatment options for children with cancer. Despite the extensive use of EPTs in pediatric oncology, little is known about parent and child experiences during EPT participation. The purposes of this pilot study were to assess the feasibility and preliminary results of having children with cancer and their parents complete measures of treatment burden and quality of life (QOL) concurrent with EPT participation. METHODS: In this descriptive, longitudinal, pilot study, parents and children were followed for the first 60 days of an EPT. Feasibility was assessed by participant enrollment and retention and completion of measures. Measures completed included the following: demographic form (completed at baseline); Diary of Trial Experiences to capture treatment burden (completed ongoing); and PedsQL™ Quality of Life Inventories, Cancer Modules, and Family Impact Module (completed at baseline, post-first disease evaluation, and off-study). Data were analyzed using descriptive statistics. RESULTS: Feasibility goals of enrollment, retention, and measure completion were partially met. Preliminary treatment burden and QOL results are provided. CONCLUSIONS: While QOL assessments may provide insight into EPT experiences, future studies need to be conducted at multiple sites and enrollment goals must account for participant attrition.Item Well-Being of Child and Family Participants in Phase 1 Pediatric Oncology Clinical Trials(Oncology Nursing Society, 2018-09-01) Crane, Stacey; Haase, Joan E.; Hickman, Susan E.; School of NursingPROBLEM IDENTIFICATION: Pediatric oncology phase 1 clinical trials (P1Ts) are essential to developing new anticancer therapies; however, they raise complex ethical concerns about balancing the need for this research with the well-being of participating children. The purpose of this integrative review was to synthesize and appraise the evidence of how P1T participation, which begins with consent and ends with the transition off the P1T, can affect the well-being (either positively or negatively) of children with cancer. The Resilience in Individuals and Families Affected by Cancer Framework, which has an outcome of well-being, was used to synthesize findings. LITERATURE SEARCH: Articles on the experiences of child (n = 21) and adult (n = 31) P1T participants were identified through systematic searches. DATA EVALUATION: Articles were evaluated on rigor and relevance to P1T participant experiences as high, medium, or low. SYNTHESIS: Minimal empirical evidence was found regarding the effect of P1T participation on the well-being of children with cancer. Adult P1T participant experiences provide insights that could also be important to children's P1T experiences. IMPLICATIONS FOR PRACTICE: To achieve a balanced approach in P1T consent discussions, nurses and healthcare providers who work with children considering participation in a P1T should share the potential effect of participation on participants' well-being.