Young Adult Cancer Survivors' Experiences of Connectedness with Their Healthcare Providers

Indiana University-Purdue University Indianapolis (IUPUI)Adolescents and young adults with cancer have poorer treatment and survivorship outcomes than either younger or older cancer patients. These individuals also have psychosocial late effects and engage in lifestyle behaviors that increase their risk of subsequent cancer and other chronic illnesses. Thus, there is a need to identify protective factors during the diagnosis and treatment period to foster healthy lifestyle behaviors. Connectedness with healthcare providers is a potential protective factor that may diminish risk-taking behaviors and foster healthcare self-management in adolescents with cancer. However, little is known about connectedness with healthcare providers from adolescents with cancer perspectives. The purpose of this study was to describe young adult cancer survivors' experiences of connectedness with their healthcare providers as they negotiated the experience across the cancer continuum from diagnosis to survivorship during adolescence. A qualitative, empirical phenomenological method guided this research. The sample consisted of 9 young adult cancer survivors who had cancer as adolescents. A broad, data generating question was constructed to elicit rich, narrative descriptions of participants' experiences of connectedness with healthcare providers, which were audio-taped and transcribed. The narrative data were analyzed using Colaizzi's method, which involved a systematic process of extracting and analyzing significant statements for formulated meanings and themes. Seven theme categories were identified and then used to develop a narrative of the essential structure of the experience of connectedness. Connectedness with healthcare providers is a multi-faceted experience that encompasses instances of not only connectedness, but also unconnectedness and disconnectedness. Effective strategies that foster connectedness with adolescents were identified. Behaviors that foster disconnectedness relate to a lack of respect for the adolescent's personhood. Findings indicate that connectedness with healthcare providers may make adolescents more likely to engage in care partnerships and effective self-management during treatment and into survivorship. When there is no connectedness or a disconnection with healthcare providers, a door shuts: there are feelings of helplessness and vulnerability, anger and resentment, and reluctance to connect with healthcare providers for cancer prevention. Clinical implications for healthcare providers are discussed. Future research should focus on connectedness theory development, measures, and interventions that foster adolescent-provider connectedness

The Effect of Parental Monitoring on Diabetes Management in Adolescents: A Systematic Review of the Literature

poster abstractObjective: Adolescents with Type 1 Diabetes require parental guidance when it comes to the management of their glycemic control. Little is known regarding how parental monitoring affects adolescents’ diabetes control. A systematic review of the literature was performed to gain more insight into how parental monitoring influences glycemic control in adolescents with Type 1 Diabetes. Methods: Databases used to identify articles included: CINAHL, PsycINFO, and Web of Science. Search terms used were teenagers, adolescents, young adults, Type 1 Diabetes, parental monitoring, diabetes management and glycemic control. Inclusion criteria included: peer-reviewed research articles published between 2000 and 2013; involved a sample of adolescents (ages 8-18); conducted in the United States; written in English; and identified parental monitoring as the main independent variable. Results: Nine studies met the inclusion criteria. Six studies were longitudinal and three were cross-sectional. Seven studies collected data from the adolescent and parent while the other two studies collected data only from the adolescent. Sample sizes ranged from n=81-376. The most common glycemic control outcome factors measured were: hemoglobin A1C scores, adherence and glucose monitoring. Findings showed that parental monitoring is positively associated with adolescents’ adherence to diabetes management. There was mixed evidence regarding the father’s role. One study showed the father’s parental monitoring had significant impact on the adolescent adherence and A1C scores; however, another study reported the opposite. Overall, adolescents’ perception of positive parental monitoring provided better adherence. Conclusion: From the nine studies reviewed, it seems that there is some evidence that parental monitoring is positively associated with beneficial outcomes in glycemic control. However, future research is needed and should examine long-term effects of parental monitoring. Additionally, greater attention is needed on diverse populations such as single parent homes, families from different ethnic backgrounds, families of differing socioeconomic statuses and adolescents without parental figures

The Impact of Family-Based Interventions on Adolescent Glycemic Control: A Systematic Review of the Literature

poster abstractObjective: Glycemic control is a major source of family conflict among adolescents with type 1 diabetes and their parents. Family conflict is a determinant of how well adolescents will maintain glycemic control throughout adolescence; thus, family conflict resolution is a crucial step to managing their diagnosis. The purpose of this systematic review is to evaluate the effectiveness of family-based interventions on glycemic control of adolescents with type 1 diabetes. Methods: Databases utilized were Medline Ovid, PsycINFO, and Web of Science. Inclusion criteria for the studies selected included: peer-reviewed studies conducted in the United States; published between January 1994 to December 2014; and evaluated a family-based intervention’s effectiveness on adolescent diabetic glycemic control. Results: 11 studies met the criteria. Methods used to resolve family conflict included teamwork interventions, tailored interventions, behavioral family systems therapy, and family problem-solving management. Six studies did not show any significant influence on glycemic control. The only significant results on lowering glycemic control were found when a12-month follow-up was completed. Behavioral family systems therapy and family problem-solving management were found to be significant in improving adolescent glycemic control. Conclusion: It is crucial for healthcare providers to be aware of effective family-based interventions to help resolve family conflict and promote healthy glycemic control among adolescents with type 1 diabetes. Interventions specifically designed to address family conflict will not only foster healthy family relationships, but will target adolescents struggling to maintain adequate glycemic control. Results from this review shows that interventions based on family systems therapy and problem-solving management seem to be most effective. Future research is needed to replicate these findings in larger, more diverse samples

Principles and Strategies for Monitoring Data Collection Integrity in a Multi-site Randomized Clinical Trial of a Behavioral Intervention

Although treatment fidelity strategies for enhancing the integrity of behavioral interventions have been well described, little has been written about monitoring data collection integrity. This article describes the principles and strategies developed to monitor data collection integrity of the "Stories and Music for Adolescent/Young Adult Resilience During Transplant" study (R01NR008583; U10CA098543; U10CA095861) -- a multi-site Children's Oncology Group randomized clinical trial of a music therapy intervention for adolescents and young adults undergoing stem cell transplant. The principles and strategies outlined in this article provide one model for development and evaluation of a data collection integrity monitoring plan for behavioral interventions that may be adapted by investigators and may be useful to funding agencies and grant application reviewers in evaluating proposals

Conservation assessment of the Drakaea livida (Orchidaceae) ecotypes and an evaluation of methods for their identification

Morphologically cryptic taxa must be accounted for when quantifying biodiversity and implementing effective conservation measures. Some orchids pollinated by sexual deception of male insects contain morphologically cryptic ecotypes, such as the warty hammer orchid Drakaea livida (Orchidaceae). This species is comprised of three cryptic pollination ecotypes, which can be distinguished based on differences in pollinator species and floral volatiles. The present study aims were: (a) to investigate the geographic range of the three D. livida ecotypes, enabling assessment of their conservation status; and (b) to test the efficacy of different methods of identifying the D. livida ecotypes. Three methods of ecotype identification were assessed: morphometric analysis, genome size comparison, and analysis of chemical volatile composition of labellum extracts from pollinated flowers. MaxEnt species distribution models revealed that each ecotype has a different predicted geographic range, with small areas of overlap at the range margins. One ecotype is known from just ten populations over a limited geographic area, the majority of which has been cleared for agriculture, and urban development. While there was broad overlap between the ecotypes in individual morphological traits, multivariate analysis of morphological traits provided correct assignment to ecotype in 87% of individuals. Using the labellum of pollinated flowers, screening for volatile chemical compounds associated with particular ecotypes returned an even higher correct assignment rate, of 96.5%. As such, we advocate that the use of volatiles from the labellum of recently pollinated flowers is an effective way to determine the ecotype of unknown individuals of D. livida, with minimal impact on the flowering plant

Differences in hospital glycemic control and insulin requirements in patients recovering from critical illness and those without prior critical illness

INTRODUCTION: Hospital patients recovering from critical illness on general floors often receive insulin therapy based on protocols designed for patients admitted directly to general floors. The objective of this study is to compare glycemic control and insulin dosing in patients recovering from critical illness and those without prior critical illness. METHODS: Medical record review of blood glucose measurements and insulin dosing in 25 patients under general ward care while transitioning from the intensive care unit (transition group) and 25 patients admitted directly to the floor (direct floor group). RESULTS: Average blood glucose did not differ significantly between groups (transition group 9.49 mmol/L, direct floor group 9.6 mmol/L; P = 0.83). Significant differences in insulin requirements were observed between groups with average daily doses of 55.9 units in patients transitioning from the intensive care unit (ICU) versus 25.6 units in the direct floor group (P = 0.004). CONCLUSIONS: Patients recovering from critical illness required significantly larger doses of insulin than those patients admitted directly to the floor. Managing insulin therapy in patients transitioning from the ICU may require greater insulin doses

Perceptions of communication, family adaptability and cohesion: a comparison of adolescents newly diagnosed with cancer and their parents

PURPOSE: To describe and compare adolescent and parent perspectives on communication, family adaptability and cohesion, as well as relationships among these variables, during the first month of an adolescent's cancer diagnosis. METHODS: Seventy adolescent-parent dyads were enrolled as part of a larger multi-site study. The adolescents ranged in age from 11 to 19, and 61% were males. Parents were predominately mothers (83%). Dyads were predominately non-Hispanic Caucasian (63%). Measures included the Parent-Adolescent Communication Scale and the Family Adaptability and Cohesion Evaluation Scale (FACES II). Paired t-tests, Pearson correlations, intra-class correlation coefficients and multiple linear regression analyses were completed. RESULTS: Adolescent scores on communication, family adaptability and cohesion were significantly lower than parent scores. The inter-dyadic agreement between adolescents and parents was low. Communication, family adaptability and cohesion were examined separately for adolescents and for parents, and significant relationships were found. Both adolescent- and parent-perceived communication was significantly associated with family adaptability and cohesion outcomes. CONCLUSIONS: Differences were found in adolescent and parent perceptions of communication, family adaptability and cohesion. When both adolescents and parents had better perceived communication, this was associated with better perceived family adaptability and cohesion. Results suggest that the development of interventions to enhance adolescent-parent communication could help foster better family adaptability and cohesion, which may ultimately impact their psychological adjustment. In addition, understanding the degree to which adolescents and parents disagree on their perceptions, including the results that parents generally have more favorable perceptions, may be a useful starting point when developing interventions

Novice Nurses’ Experiences With Palliative and End-of-Life Communication

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses

The Helicobacter pylori methylome is acid-responsive due to regulation by the two-component system ArsRS and the type I DNA methyltransferase HsdM1 (HP0463)

In addition to its role in genome protection, DNA methylation can regulate gene expression. In this study, we characterized the impact of acidity, phase variation, and the ArsRS TCS on the expression of the Type I m6A DNA methyltransferase HsdM1 (HP0463) of Helicobacter pylori 26695 and their subsequent effects on the methylome. Transcription of hsdM1 increases at least fourfold in the absence of the sensory histidine kinase ArsS, the major acid-sensing protein of H. pylori. hsdM1 exists in the phase-variable operon hsdR1-hsdM1. Phase-locking hsdR1 (HP0464), the restriction endonuclease gene, has significant impacts on the transcription of hsdM1. To determine the impacts of methyltransferase transcription patterns on the methylome, we conducted methylome sequencing on samples cultured at pH 7 or pH 5. We found differentially methylated motifs between these growth conditions and that deletions of arsS and/or hsdM1 interfere with the epigenetic acid response. Deletion of arsS leads to altered activity of HsdM1 and multiple other methyltransferases under both pH conditions indicating that the ArsRS TCS, in addition to direct effects on regulon transcription during acid acclimation, may also indirectly impact gene expression via regulation of the methylome. We determined the target motif of HsdM1 (HP0463) to be the complementary bipartite sequence pair 5′-TCAm6AVN6TGY-3′ and 3′-AGTN6GAm6ACA-5′. This complex regulation of DNA methyltransferases, and thus differential methylation patterns, may have implications for the decades-long persistent infection by H. pylori

The Resilience in Illness Model Part 2: Confirmatory Evaluation in Adolescents and Young Adults With Cancer

BACKGROUND: Empirically derived and tested models are necessary to develop effective, holistic interventions to improve positive health outcomes in adolescents and young adults (AYA) with cancer, yet few exist. This article is the second of 2 articles reporting on evaluation of the Resilience in Illness Model (RIM) as a predictive model to guide positive health research and practice. OBJECTIVE: The aim of this study was to report the confirmatory model evaluation of the RIM. METHODS: A confirmatory evaluation of RIM was done using baseline data from a sample of 113 AYA aged 11 to 24 years who were undergoing hematopoietic stem cell transplant and enrolled in a randomized controlled trial of a behavioral intervention to enhance resilience. Data were analyzed using latent variable structural equation modeling. RESULTS: Goodness-of-fit indices supported RIM as a confirmed model that accounted for large amounts of variance in the outcomes of self-transcendence (62%) and resilience (72%), and in 3 of 5 mediators, specifically social integration (74%), courageous coping (80%), and hope-derived meaning (87%), as well as small to moderate amounts of variance in the remaining mediators of defensive coping (1%) and family environment (35%). CONCLUSIONS: Findings establish the RIM as a plausible predictive framework for explaining ways AYA with cancer transcend their illness and achieve resilience resolution and for guiding intervention studies in this population. Additional research is needed to explore RIM's transferability based on stage of illness, other chronic diseases, and cultural diversity. IMPLICATIONS FOR PRACTICE: Results support the RIM as an appropriate guide for developing and evaluating interventions to foster positive adjustment in AYA with cancer