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Background: Health literacy may influence the transition from pediatric care to adult care in adolescents with sickle cell disease (SCD). It is postulated that one influencing factor of health literacy in adolescents with SCD is health-seeking behavior. The purpose of this study was twofold: (1) to explore health-seeking behaviors of adolescents with SCD and (2) to determine if there are significant differences in health literacy levels of adolescents with SCD based upon health-seeking behaviors. Methods: This was a cross-sectional, descriptive study evaluating health-seeking behaviors and health literacy in 110 Black and non-Hispanic adolescents with SCD. Convenience sampling was utilized for recruitment. The inclusion criteria were a diagnosis of one of the four primary genotypes of SCD and age of 10-19 years. Health literacy was evaluated using the Newest Vital Sign (NVS). Frequencies and percentages were calculated for all variables. Independent Samples t -tests were conducted to evaluate differences in health literacy scores based upon differing health-seeking behaviors. Results: The mean age of participants was 14.8 years (SD = 2.2). The mean NVS score was 2.7 (SD = 1.6). The two most common responses to "where do you go FIRST for health information?" were the Internet (29.6%; n = 40) and health care providers (27.4%; n = 37). There was no statistical difference in NVS scores between adolescents using the Internet versus health care providers as their first source of health information (t [75] = −.12; p =.22). Discussion: Knowledge of health-seeking behaviors and health literacy in adolescents with SCD gives insight into the design and evaluation of future interventions to improve health and health literacy in this population. [ABSTRACT FROM AUTHOR]

Introduction: Participation on a collaborative team is an attractive option for conducting research, especially in pediatric hematology/oncology nursing, where the patient population is small. The Consortium to Study Symptoms in Adolescents and Young Adults with Cancer (CS2AYAC) is a nursing research team that has been in existence for over a decade. Purpose: The authors share the process by which CS2AYAC formed and describe key features that contribute to its sustainability. Results: While the team developed organically rather than via the tenets of team science, key aspects of success include principles related to mentorship, communication, building trust, establishing shared goals, and managing conflict. Conclusions: This description of one team's experience may help other nurses build their own teams for research. Strong, collaborative research teams will advance pediatric hematology/oncology nursing science and scholarship and can be an important source of collegiality and support. [ABSTRACT FROM AUTHOR]

For individuals with sickle cell disease (SCD), mild to moderate exercise is advised, but self-regulation of these intensities is difficult. To regulate intensity, one SCD recommendation is to stop exercising at the first perception of fatigue. However, perceived effort and affect (how one feels) are perceptual cues that are commonly used to guide exercise intensity. This study (a) examined perceived effort, affect, and fatigue in relation to metabolic state (gas exchange) in adolescents and young adults (AYAs) with SCD, (b) explored guidelines AYAs use to self-regulate exercise, and (c) compared perceived effort and affect at gas exchange threshold (GET) with healthy counterparts. Twenty-two AYAs with SCD completed an incremental cycle test. Perceived effort, affect, and fatigue were assessed every 2 minutes. A mixed-effects linear model was conducted to model changes in effort, affect, and fatigue across time. Mean scores of effort and affect at GET were compared with published data of healthy counterparts. Participants were queried about self-regulation exercise strategies. Findings indicated that both perceived fatigue and effort at GET was lower than expected. Perceived effort was lower (p <.0001), and perceived affect was significantly higher (p =.0009) than healthy counterparts. Interviews revealed that most participants (95%) do not stop exercising until fatigue is moderate to severe, and many (73%) do not stop until symptoms are severe (chest tightness, blurry vision). Nurses should review guidelines for safe exercise with AYAs with SCD. Exercise training may be beneficial to AYAs with SCD for learning how to interpret bodily responses to exercise to improve self-regulation. [ABSTRACT FROM AUTHOR]

The purpose of this article is to discuss the use of the Newest Vital Sign (NVS) health literacy instrument in adolescents with sickle cell disease. The NVS evaluates both literacy and numeracy (the ability to understand and work with numbers) as well as the ability to locate and apply information. It is important to validate the NVS for use in adolescents, as the only currently validated instrument, the Rapid Estimate of Adolescent Literacy in Medicine–Teen (REALM-Teen), does not measure numeracy or the ability to locate or apply information. This cross-sectional, descriptive, exploratory correlational study included appraisal of data from completion of the REALM-Teen and NVS instruments by a convenience sample of 75 adolescents with sickle cell disease. The mean age of this study sample was 14.7 years (SD = 2.2). The mean grade level of participants was 8.7 (SD = 2.2). Internal consistency for the NVS in this population was acceptable (α = .63). Criterion validity was based on correlations between raw scores on the NVS and raw scores on the REALM-Teen. There was a significant moderate, positive correlation between NVS and REALM-Teen scores (r = .38, p < .01), demonstrating good criterion validity. Preliminary evidence for reliability and validity of the NVS in this population was established. [ABSTRACT FROM AUTHOR]

This qualitative study employed hermeneutic phenomenology and narrative inquiry to examine the topic of sexuality and adolescents with cancer from the perspectives of survivors who had experienced cancer as adolescents. This investigation examined the potentially sensitive, disquieting, and often taboo issue of sexuality in the interest of optimizing wellness in young people, and, ultimately, in the health of adults. Understanding the adolescent body as a sensitive, sexual, and developing self can enrich our understanding of adolescent cancer and promote best health care and practices, examining ways that we might mitigate the long-term effects of arrested or delayed development of sexual identity. In this article, we discuss phase 1 of the study, which used hermeneutics as the method of inquiry. Findings included a general experience of adolescents having a sense of "losing themselves" while at the same time finding themselves in a new light. Other findings include the connection between sexuality, self, and identity; the unique "tribe" of adolescents with cancer; the necessity for sexuality to take a backseat to cancer; the changing mirror images from self and others; sexuality and fertility; and, ultimately, that sexuality is a relational experience. [ABSTRACT FROM AUTHOR]

The purpose of this philosophical hermeneutic study was to determine if, and understand how, digital stories might be effective therapeutic tools to use with children and adolescents/young adults (AYA) with cancer, thus helping mitigate suffering. Sixteen participants made digital stories with the help of a research assistant trained in digital storytelling and were interviewed following the completion of their stories. Findings from this research revealed that digital stories were a way to have others understand their experiences of cancer, allowed for further healing from their sometimes traumatic experiences, had unexpected therapeutic effects, and were a way to reconcile past experiences with current life. Digital stories, we conclude, show great promise with the pediatric and AYA oncology community and we believe are a way in which the psychosocial effects of cancer treatment may be addressed. Recommendations for incorporating digital stories into clinical practice and follow-up programs are offered. [ABSTRACT FROM AUTHOR]