Young patients', parents', and survivors' communication preferences in paediatric oncology: Results of online focus groups

Contains fulltext : 51596.pdf ( ) (Open Access)BACKGROUND: Guidelines in paediatric oncology encourage health care providers to share relevant information with young patients and parents to enable their active participation in decision making. It is not clear to what extent this mirrors patients' and parents' preferences. This study investigated communication preferences of childhood cancer patients, parents, and survivors of childhood cancer. METHODS: Communication preferences were examined by means of online focus groups. Seven patients (aged 8-17), 11 parents, and 18 survivors (aged 8-17 at diagnosis) participated. Recruitment took place by consecutive inclusion in two Dutch university oncological wards. Questions concerned preferences regarding interpersonal relationships, information exchange and participation in decision making. RESULTS: Participants expressed detailed and multi-faceted views regarding their needs and preferences in communication in paediatric oncology. They agreed on the importance of several interpersonal and informational aspects of communication, such as honesty, support, and the need to be fully informed. Participants generally preferred a collaborative role in medical decision making. Differences in views were found regarding the desirability of the patient's presence during consultations. Patients differed in their satisfaction with their parents' role as managers of the communication. CONCLUSION: Young patients' preferences mainly concur with current guidelines of providing them with medical information and enabling their participation in medical decision making. Still, some variation in preferences was found, which faces health care providers with the task of balancing between the sometimes conflicting preferences of young cancer patients and their parents

Influence of Landscape Structure and Human Modifications on Insect Biomass and Bat Foraging Activity in an Urban Landscape

Urban landscapes are often located in biologically diverse, productive regions. As such, urbanization may have dramatic consequences for this diversity, largely due to changes in the structure and function of urban communities. We examined the influence of landscape productivity (indexed by geology), housing density and vegetation clearing on the spatial distribution of nocturnal insect biomass and the foraging activity of insectivorous bats in the urban landscape of Sydney, Australia. Nocturnal insect biomass (g) and bat foraging activity were sampled from 113 sites representing backyard, open space, bushland and riparian landscape elements, across urban, suburban and vegetated landscapes within 60 km of Sydney's Central Business District. We found that insect biomass was at least an order of magnitude greater within suburban landscapes in bushland and backyard elements located on the most fertile shale influenced geologies (both p<0.001) compared to nutrient poor sandstone landscapes. Similarly, the feeding activity of bats was greatest in bushland, and riparian elements within suburbs on fertile geologies (p = 0.039). Regression tree analysis indicated that the same three variables explained the major proportion of the variation in insect biomass and bat foraging activity. These were ambient temperature (positive), housing density (negative) and the percent of fertile shale geologies (positive) in the landscape; however variation in insect biomass did not directly explain bat foraging activity. We suggest that prey may be unavailable to bats in highly urbanized areas if these areas are avoided by many species, suggesting that reduced feeding activity may reflect under-use of urban habitats by bats. Restoration activities to improve ecological function and maintain the activity of a diversity of bat species should focus on maintaining and restoring bushland and riparian habitat, particularly in areas with fertile geology as these were key bat foraging habitats

Uncovering Ecosystem Service Bundles through Social Preferences

Ecosystem service assessments have increasingly been used to support environmental management policies, mainly based on biophysical and economic indicators. However, few studies have coped with the social-cultural dimension of ecosystem services, despite being considered a research priority. We examined how ecosystem service bundles and trade-offs emerge from diverging social preferences toward ecosystem services delivered by various types of ecosystems in Spain. We conducted 3,379 direct face-to-face questionnaires in eight different case study sites from 2007 to 2011. Overall, 90.5% of the sampled population recognized the ecosystem’s capacity to deliver services. Formal studies, environmental behavior, and gender variables influenced the probability of people recognizing the ecosystem’s capacity to provide services. The ecosystem services most frequently perceived by people were regulating services; of those, air purification held the greatest importance. However, statistical analysis showed that socio-cultural factors and the conservation management strategy of ecosystems (i.e., National Park, Natural Park, or a non-protected area) have an effect on social preferences toward ecosystem services. Ecosystem service trade-offs and bundles were identified by analyzing social preferences through multivariate analysis (redundancy analysis and hierarchical cluster analysis). We found a clear trade-off among provisioning services (and recreational hunting) versus regulating services and almost all cultural services. We identified three ecosystem service bundles associated with the conservation management strategy and the rural-urban gradient. We conclude that socio-cultural preferences toward ecosystem services can serve as a tool to identify relevant services for people, the factors underlying these social preferences, and emerging ecosystem service bundles and trade-offs

Diverse aging rates in ectothermic tetrapods provide insights for the evolution of aging and longevity

Comparative studies of mortality in the wild are necessary to understand the evolution of aging; yet, ectothermic tetrapods are underrepresented in this comparative landscape, despite their suitability for testing evolutionary hypotheses. We present a study of aging rates and longevity across wild tetrapod ectotherms, using data from 107 populations (77 species) of nonavian reptiles and amphibians. We test hypotheses of how thermoregulatory mode, environmental temperature, protective phenotypes, and pace of life history contribute to demographic aging. Controlling for phylogeny and body size, ectotherms display a higher diversity of aging rates compared with endotherms and include phylogenetically widespread evidence of negligible aging. Protective phenotypes and life-history strategies further explain macroevolutionary patterns of aging. Analyzing ectothermic tetrapods in a comparative context enhances our understanding of the evolution of aging.Animal science

Dimensions of Treatment Decision Making in Adolescents and Young Adults With Cancer

Adolescents and young adults (AYAs) with cancer are encouraged or expected to be involved in treatment decision making (TDM). There is limited research on whether and how they want to be involved in TDM. Treatment outcomes in the AYA group have improved minimally compared to their older and younger peers. They experience treatment non-adherence rates as high as 60% that can lead to increased risk of relapse. Open communication, positive family relationships and involvement of the AYA in treatment decisions and illness management could support treatment adherence. However, there is insufficient research exploring the AYA’s involvement in TDM. Focused Ethnography within the sociologic tradition informed by symbolic interactionism was used to explore and describe AYAs’ experiences with cancer TDM.Semi-structured Interviews and informal participant observation were used. Thirty-one interviews were conducted with sixteen AYAs between the ages of 15 and 20 years. Participants were asked to reflect on a major recent treatment decision making experience (e.g., clinical trial or surgery) and other treatment decisions made since. Analysis included field notes, analytic memos and coding of interview transcripts. The research was conducted at two pediatric institutions.Three dimensions related to AYAs’ involvement in cancer TDM were identified: 1) becoming experienced with cancer, 2) import of the decision and 3) decision making roles. AYAs’ preferences for participation in decision making may vary over time and by type of decision. Parents play a particularly important supportive role. Categories related to their new way of being were also identified and centered around not being able to do what they used to do, changing interpersonal relationships and living with uncertainty. Participants described spending more time with family who provided strength, support and advocacy. They described various strategies for dealing with cancer, and how they decided which activities to participate in, or avoid. Future research is needed to focus on developing and implementing interventions to assist AYAs to develop decision making skills and be involved in decisions about their care, as well and enable AYAs to feel less isolated and facilitate their adjustment to their new “cancer normal.

Parental Involvement in Paediatric Cancer Treatment Decisions

This study investigated parents' information needs and involvement in decision-making processes affecting the care of children diagnosed with cancer. Interviews and questionnaires were used to assess parental satisfaction in 50 mothers and 16 fathers responsible for 58 children in an English Paediatric Oncology Unit. Parents reported that doctors contributed almost twice as much to the decision-making process as they did, but parental satisfaction was positively correlated with the amount of information provided when giving informed consent. Satisfaction about their involvement in this process relied heavily upon the level of support received from others. Parents consenting to their child's involvement in non-randomised trials perceived themselves to be under greater pressure from others during the decision-making process while those whose children were further along the treatment trajectory were more uncertain about decisions previously made. Findings indicate that the accessibility, support, information and degree of control afforded to parents by healthcare professionals impacts upon their satisfaction with both the decision-making process and their confidence in the decisions thus made. Information and support tailored to parents' specific needs may therefore enhance satisfaction with clinical decision making and reassure parents about decisions made in the long-term interest of their child's health

Parental Treatment Decision Making in Pediatric Oncology

Objective: To review progress and future plans for a research program about parents\u27 making treatment decisions for their children with cancer. Data Sources: Theoretical papers, review articles, and research reports. Conclusion: Three important questions need to be addressed to achieve the goal of supporting parents in treatment decision making: 1) What factors predict a parent\u27s preferred role in decision making? 2) What are the critical outcomes from parental decision making that nurses could help to improve? 3) Is it role choice, actual role assumed, or congruence between preferred and actual role in decision making that predicts decision outcomes for the parents? Implications for Nursing Practice: Research-based responses to the remaining questions about parent treatment decision making will help nurses develop and test interventions designed to support parents in their decision making experiences. © 2005 Elsevier Inc. All rights reserved