Sickle cell disease (SCD) is a hemoglobinopathy that causes debilitating pain. Patients often report dissatisfaction during care seeking for pain or a sickle cell crisis (SCC). The Theory of ...Self-Care Management for SCD conceptualizes assertive communication as a self-care management resource that improves healthcare outcomes.
This pilot study aimed to determine whether adults with SCD could learn to use the Situation, Background, Assessment, Recommendation (SBAR) communication method using a web-based trainer, and it aimed to determine their perceptions of the training.
The participants included
= 18 adults with SCD. Inter-rater reliability (IRR) among three reviewers was used to evaluate the participants' ability to respond as expected to prompts using SBAR communication within the web-based platform. Content analysis was used to describe the participants' perspectives of the acceptability of using the SBAR patient-HCP communication simulation.
The SBAR IRR ranged from 64 to 94%, with 72% to 94% of the responses being evaluated as the using of the SBAR component as expected. The predominant themes identified were (1) Patient-Provider Communication and Interaction; (2) Patients want to be Heard and Believed; (3) Accuracy of the ED Experience and Incorporating the Uniqueness of each Patient; and (4) the Overall Usefulness of the Video Trainer emerging.
This pilot study supported the usefulness and acceptability of a web-based intervention in training adults with SCD to use SBAR to enhance patient-HCP communication. Enhancing communication may mitigate the barriers that individuals with SCD encounter during care seeking and improve the outcomes. Additional studies with larger samples need to be conducted.
Nurses work in a fast‐paced environment with increased expectations and distractions. Ubiety is a new concept that describes how nurses care for one patient at a time amid distractions. The purpose ...of this study was to explore the experiences of exemplar registered nurses (Daisy Award nurse nominees) in practicing ubiety when caring for patients in an acute care setting. Qualitative data was collected through semistructured interviews and analyzed. “Making each patient the star of the minute” emerged as the main theme and included five subthemes which highlight how nurses practice ubiety: (1) anticipating and managing distractions, (2) putting my whole self in, (3) nurse self‐preservation, (4) my nursing identity, and (5) favorable practice environment. Results of this study highlight the importance of developing skills to anticipate patient care needs and supporting individual self‐preservation strategies for nurses.
Attending nursing research conferences as a PhD student is part of the research socialization experience. Participating in our excellent and recent ENRS conference was exciting and made us itchy for ...next year's planned live conference. It also made us contemplate the value and differences in these conference formats. The purpose of this paper is to describe the benefits and challenges for PhD students attending the virtual research conference. We present the pros and cons experienced with the virtual format. We then discuss some of the contextual socialization experiences in-person conferences provide the PhD student. Strategies are presented for both the student and faculty to consider as opportunities to augment the conference research experience overall. Research conferences are invaluable tools for networking, learning, and contemplating ideas to ensure nurse scientists continue to create innovative studies in the future.
•Nursing science PhD students benefit from attendance at research conferences to augment their research socialization experience(s).•Ensuring PhD nursing students and faculty augment the conference experience facilitates stewarding the discipline and its future leaders.•Virtual and in-person research conferences allow PhD nursing students to see how successful nurse scientists link their research to policy—locally, regionally, and/or nationally.
Scholars who research phenomena of concern to the discipline of nursing are challenged with making wise choices about different qualitative research approaches. Ultimately, they want to choose an ...approach that is best suited to answer their research questions. Such choices are predicated on having made distinctions between qualitative methodology, methods, and analytic frames. In this article, we distinguish two qualitative research approaches widely used for descriptive studies: descriptive phenomenological and qualitative description. Providing a clear basis that highlights the distinguishing features and similarities between descriptive phenomenological and qualitative description research will help students and researchers make more informed choices in deciding upon the most appropriate methodology in qualitative research. We orient the reader to distinguishing features and similarities associated with each approach and the kinds of research questions descriptive phenomenological and qualitative description research address.
Abstract The aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values, and support) may contribute to research ...fatigue among youth and parents of youth with HIV, cystic fibrosis, and Type 1 diabetes. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews and completed a demographics form and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: Blurred Lines and Hope for the Future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered.
The purpose of this article is to review the Health Insurance Portability and Accountability Act (HIPAA), the Privacy Rule, the Security Rule, and common issues encountered by researchers related to ...these federal privacy and security requirements. This article discusses the misconceptions that researchers may hold about HIPAA, including the process for reviewing protected health information when preparing to conduct a study, potential constraint on participant recruitment, and application of HIPAA to a researcher's clinical population. We also present ways to reframe the negative connotations associated with this regulation and provide tips for researchers about how to work with HIPAA when planning and conducting a study and reporting on study findings. Finally, we suggest that the principles of HIPAA be considered when conducting studies in international settings.
History Lesson Sullivan-Bolyai, Susan L.; Feetham, Suzanne
Journal of family nursing,
05/2013, Letnik:
19, Številka:
2
Journal Article
Recenzirano
There are many kinds of financial and coordination issues resulting in fragmentation of care that leaves families to navigate the system on their own and threatens the coordinated home care model. In ...the current context it is important that people remember the vanguard efforts of those families that enabled them to grow up and lead a normal life, completing their college education, and working as a contributing citizens. Here, Sullivan-Bolyani shares how a little girl named Katie Beckett and her family move to mountains to change care and policy to help children with special health care needs go home.
Eliminating health disparities by the year 2010 has become a clear priority for nursing and health sciences research. To date, much of the research has relied on traditional analytic methods to ...identify the disparities and develop clinical interventions. However, health disparities are typically embedded in complex, cultural and contextual issues. Interventions to improve access, quality and care among vulnerable populations need to be developed with these factors in mind. This article illustrates the benefits of using Qualitative Description as one method for assessing, developing and refining interventions with vulnerable populations. Qualitative Description study results have tremendous potential to translate directly to pressing health care situations and provide clear information about ways to improve care.
Burnout Among Young Adults With Type 1 Diabetes Perez, Danielle; Sullivan-Bolyai, Susan; Bova, Carol ...
The science of diabetes self-management and care,
06/2024, Letnik:
50, Številka:
3
Journal Article
Recenzirano
Purpose
The purpose of this qualitative descriptive study was to describe the experience of diabetes burnout in young adults with type 1 diabetes (T1DM). In addition, aims included participant ...perspectives of risk and protective factors associated with burnout and ways to balance everyday life with diabetes self-management (DSM).
Methods
Young adults with T1DM (N = 11) were recruited through social media platforms and modified snowball sampling and interviewed. Informational redundancy was achieved. Qualitative thematic coding and analysis were conducted within and across transcripts.
Results
Diabetes burnout was described as the willingness to put diabetes and DSM on the “back burner” and let things slide due to exhaustion, frustration, apathy, and the desire to be like everyone else for a while. Risk and protective factors were identified along with strategies to achieve balance of DSM in everyday life.
Conclusions
This study identified a clear definition of diabetes burnout and acknowledges this concept as distinct and separate from other psychosocial conditions. Health care providers can utilize this information to identify individuals at risk for diabetes burnout and offer more effective support to lessen the overall burden associated with T1DM.
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