What Lies Past Remission: The Perceived Late Effects of Pediatric Cancer

Objective Pediatric cancer survival rates are increasing (Childhood Cancer Canada Foundation, 2011) and with this, so are the late effects of pediatric cancer (Oeffinger et al., 2006). This research examines the lived experiences of the perceived long-term effects of pediatric cancer on adult survivors and their primary support persons in order to understand the multifaceted nature of the illness on adults, and how it affects others close to them. Methods The theoretical orientation used to guide the research was phenomenology in order to present an accurate depiction of all the participants’ lived experiences. Specifically, background questionnaires were administered and one-on-one semi-structured interviews were completed and transcribed verbatim for subsequent data analysis. Field notes, member checks, and triangulation were used to enhance the credibility of the study. Results From the analysis four themes emerged: (1) “There wasn’t a lot of time to sit and think.”: The Pediatric Cancer Experience, (2) “There is no before cancer…there’s only cancer.”; (3) “I don’t know if I would change it.”; and (4) “As long as you need me I’m yours.”. All participants recognized that there were both negative and positive aspects to life after a pediatric cancer experience. Conclusions Overall, this study provides knowledge on how undergoing pediatric cancer changes survivors, subsequently affecting them and their primary support persons for their lives. Their stories can provide strength and comfort for individuals undergoing, or caring for an individual undergoing a pediatric cancer diagnosis and treatment

“I can’t be the nurse I want to be”: Stories of moral distress in pediatric oncology nurses’ caregiving narratives

This thesis presents the caregiving narratives of nine pediatric oncology nurses that illustrate the embeddedness of their caregiving and moral distress within institutional contexts that limit their capacity to be the nurses they want to be. Informed by the concepts of moral distress, bearing witness, and narrative repair, a critical narrative methodology was employed to examine the nurses’ caregiving experiences in relation to broader discourses and neoliberal, corporatized health care settings. The nurses’ stories were marked by ambivalence and moral distress and are presented in four narrative themes, which illustrate: the nurses’ struggles to complete their tasks and address multiple and shifting needs of patients and families in under-resourced and chaotic working conditions; institutional constraints on nurses’ capacities to maintain physical, narrative, and moral proximity to patients and families; how the nurses form collective resilience through their shared moral distress to survive unsupportive working conditions; how the nurses mobilized narrative knowledge of patients and families to enact their moral responsibilities; and how they narratively repaired their fractured moral identities to restore their identities as the nurses they wanted to be. The findings illustrate how the nurses’ counterstories ascribe value and meaning to the relational caregiving that exceeds the physical care associated with treatment and cure, and re-locate the source of moral distress within unsupportive institutions rather than in the emotionally challenging character of pediatric oncology caregiving. By linking individual caregiving narratives to broader contexts, the findings contribute epistemologically grounded narratives to enrich research on the stresses associated with pediatric oncology caregiving, provide narrative depth to enhance theoretical work in nursing on moral distress and bearing witness, and extend the concept of narrative repair to consider how narrative functions to facilitate relational caregiving and restore nurses’ damaged moral identities. The creation of narrative spaces is suggested as a way to complicate cultural and professional understandings of pediatric cancer caregiving. Storytelling can inform nursing education, practice and policy to highlight the ambivalences of pediatric oncology caregiving and to bridge nurses’ experiences of caregiving with management, other health care providers, and the general public, as well as to stimulate social change

Regression Trees and Ensembles for Cumulative Incidence Functions

The use of cumulative incidence functions for characterizing the risk of one type of event in the presence of others has become increasingly popular over the past decade. The problems of modeling, estimation and inference have been treated using parametric, nonparametric and semi-parametric methods. Efforts to develop suitable extensions of machine learning methods, such as regression trees and related ensemble methods, have begun comparatively recently. In this paper, we propose a novel approach to estimating cumulative incidence curves in a competing risks setting using regression trees and associated ensemble estimators. The proposed methods employ augmented estimators of the Brier score risk as the primary basis for building and pruning trees, and lead to methods that are easily implemented using existing R packages. Data from the Radiation Therapy Oncology Group (trial 9410) is used to illustrate these new methods

Evaluation of drinking patterns and their impact on alcohol-related aggression: a national survey of adolescent behaviours

BACKGROUND: Although there have been a wide range of epidemiological studies examining the impact of patterns of alcohol consumption among adolescents, there remains considerable variability in both defining these patterns and the ability to comprehensively evaluate their relationship to behavioural patterns. This study explores a new procedure for defining and evaluating drinking patterns and integrating well-established indicators. The composite measure is then used to estimate the impact of these patterns on alcohol-related aggressive behaviour among Italian adolescents. METHODS: Data were collected as part of the 2011 European School Survey Project on Alcohol and other Drugs (ESPAD). A national sample of 14,199 students aged 15–19 years was collected using an anonymous, self-administered questionnaire completed in a classroom setting. Drinking patterns were established using principal component analysis. Alcohol-related aggression was analysed as to its relationship to patterns of drinking, behaviour of friends towards alcohol use, substance use/abuse, school performance, family relationships and leisure activities. RESULTS: Several specific drinking patterns were identified: “Drinking to Excess” (DE), “Drinking with Intoxication” (DI) and “Drinking but Not to Excess” (DNE). A higher percentage of males were involved in alcohol-related aggression compared with females. In males, the DE and DI patterns significantly increased the likelihood of alcohol-related aggression, whereas the DNE pattern was negatively associated. Similar results were found in females, although the DI pattern was not significantly associated with alcohol-related aggression. Overall, cigarette smoking, illegal drug use, truancy, limited parental monitoring, frequent evenings spent outside of the home and peer influence associated strongly with alcohol-related aggression. CONCLUSIONS: Our findings suggest that drinking patterns, as uniquely monitored with an integrated metric, can: 1) explain drinking habits better than commonly used indicators of alcohol use and 2) provide a better understanding of behavioural risks such as alcohol-related aggression. Environmental background also appears to strongly associate with this type of aggressive behaviour

Translating developmental origins of health and disease in practice: health care providers\u27 perspectives.

Currently, there is limited knowledge on how health care providers perceive and understand the Developmental Origins of Health and Disease (DOHaD), which may impact how they inform patients and their families throughout the perinatal period. This qualitative descriptive study explored if and how health care providers counsel on in utero programming and future health outcomes with parents, both preconception and during pregnancy. One-on-one, semi-structured interviews were conducted with 23 health care providers from varying health disciplines including obstetrics and gynaecology, midwifery, paediatrics, endocrinology and internal medicine. Audiotaped interviews were transcribed verbatim and analysed using inductive thematic analysis. Three themes were identified: Knowledge about DOHaD, Counselling on DOHaD in Practice Settings and Impact of DOHaD on Health. Health care providers not only expressed excitement over the potential health benefits of DOHaD counselling but also indicated barriers to knowledge translation, including a lack of knowledge among providers and a disconnect between basic scientists and practitioners. All health care providers expressed concerns on how and when to introduce the concept of DOHaD when counselling patients and called for the development of practice guidelines. Counselling on DOHaD needs to be framed in a way that is empowering, minimising the potential of coercion and guilt. More interaction and collaboration are needed between health care providers and researchers to identify strategies to support knowledge translation generated from DOHaD research into practice settings