Information provision and information needs in adult survivors of childhood cancer

BACKGROUND Knowledge about their past medical history is central for childhood cancer survivors to ensure informed decisions in their health management. Knowledge about information provision and information needs in this population is still scarce. We thus aimed to assess: (1) the information survivors reported to have received on disease, treatment, follow-up, and late effects; (2) their information needs in these four domains and the format in which they would like it provided; (3) the association with psychological distress and quality of life (QoL). PROCEDURE As part of the Follow-up survey of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to all survivors (≥18 years) who previously participated to the baseline survey, were diagnosed with cancer after 1990 at an age of <16 years. RESULTS Most survivors had received oral information only (on illness: oral: 82%, written: 38%, treatment: oral: 79%, written: 36%; follow-up: oral: 77%, written: 23%; late effects: oral: 68%, written: 14%). Most survivors who had not previously received any information rated it as important, especially information on late effects (71%). A large proportion of survivors reported current information needs and would like to receive personalized information especially on late effects (44%). Survivors with higher information needs reported higher psychological distress and lower QoL. CONCLUSIONS Survivors want to be more informed especially on possible late effects, and want to receive personalized information. Improving information provision, both qualitatively and quantitatively, will allow survivors to have better control of their health and to become better decision makers. Pediatr Blood Cancer 2014;61:312-318. © 2013 Wiley Periodicals, Inc.

Do implicit motives and basic psychological needs interact to predict well-being and flow? Testing a universal hypothesis and a matching hypothesis

Self-Determination Theory (Deci and Ryan in Intrinsic motivation and self-determination in human behavior. Plenum Press, New York, 1985) suggests that certain experiences, such as competence, are equally beneficial to everyone’s well-being (universal hypothesis), whereas Motive Disposition Theory (McClelland in Human motivation. Scott, Foresman, Glenview, IL, 1985) predicts that some people, such as those with a high achievement motive, should benefit particularly from such experiences (matching hypothesis). Existing research on motives as moderators of the relationship between basic need satisfaction and positive outcomes supports both these seemingly inconsistent views. Focusing on the achievement motive, we sought to resolve this inconsistency by considering the specificity of the outcome variables. When predicting domain-specific well-being and flow, the achievement motive should interact with felt competence. However, when it comes to predicting general well-being and flow, felt competence should unfold its effects without being moderated by the achievement motive. Two studies confirmed these assumptions indicating that the universal and matching hypotheses are complementary rather than mutually exclusive.

Unmet needs of young interventional cardiologists: the EAPCI Young survey

Aims: As part of the EAPCI Young Initiative, the European Association of Percutaneous Cardiovascular Interventions (EAPCI) conducted a survey to address the educational needs of young interventional cardiologists. Methods and results: A questionnaire was distributed to all individuals registered in the ESC database aged <36 years with an interest in interventional cardiology. Nearly two-thirds of participants (60%) indicated that they had difficulty in finding a fellowship training position. The desire for a fellow's course at European level was expressed by 95%, while 94% were in favour of developing a network of young interventional cardiologists in Europe. More than three-quarters of respondents (79%) said they had had difficulty in obtaining funding to attend EuroPCR. Multiple difficulties were identified in setting up a research programme, two of the more frequent being problematic access to research networks and the difficulties of finding a mentor. Career orientation was identified as another issue, with more than half of respondents (59%) declaring they followed career options by chance. Conclusions: The survey underlines the need to fill a gap in order to address the needs of young interventional cardiologists. It may serve as a starting point for developing educational initiatives targeted at young interventional cardiologists.

Sport psychology: Needs and perspectives for research, education and application

Sport psychology has shown an increasing development in the past 25 years. A first focus is laid on the growth of research output as indicated by the number of publications. A more detailed analysis shows that some mainstream topics are very dominant in the international research literature whereas other themes are completely lacking. Possible biases are discussed as well as consequences for the body of knowledge in sport psychology. The need for a sound training in sport psychology is discussed in relation with the progress in sport psychology research. Different concepts of education in sport psychology with their respective background are compared and their impact on the development of sport psychology is discussed. The field of application, mainly in top level sport, is presented with a focus on professional standards and deontological codes. Conclusions are drawn with the aim to open new perspectives for research, education, and application of sport psychology.

Categorizing Developer Information Needs in Software Ecosystems

We present the results of an investigation into the nature of the information needs of software developers who work in projects that are part of larger ecosystems. In an open- question survey we asked framework and library developers about their information needs with respect to both their upstream and downstream projects. We investigated what kind of information is required, why is it necessary, and how the developers obtain this information. The results show that the downstream needs are grouped into three categories roughly corresponding to the different stages in their relation with an upstream: selection, adop- tion, and co-evolution. The less numerous upstream needs are grouped into two categories: project statistics and code usage. The current practices part of the study shows that to sat- isfy many of these needs developers use non-specific tools and ad hoc methods. We believe that this is a largely unexplored area of research.

Wildlife health investigations: needs, challenges and recommendations.

In a fast changing world with growing concerns about biodiversity loss and an increasing number of animal and human diseases emerging from wildlife, the need for effective wildlife health investigations including both surveillance and research is now widely recognized. However, procedures applicable to and knowledge acquired from studies related to domestic animal and human health can be on partly extrapolated to wildlife. This article identifies requirements and challenges inherent in wildlife health investigations, reviews important definitions and novel health investigation methods, and proposes tools and strategies for effective wildlife health surveillance programs. Impediments to wildlife health investigations are largely related to zoological, behavioral and ecological characteristics of wildlife populations and to limited access to investigation materials. These concerns should not be viewed as insurmountable but it is imperative that they are considered in study design, data analysis and result interpretation. It is particularly crucial to remember that health surveillance does not begin in the laboratory but in the fields. In this context, participatory approaches and mutual respect are essential. Furthermore, interdisciplinarity and open minds are necessary because a wide range of tools and knowledge from different fields need to be integrated in wildlife health surveillance and research. The identification of factors contributing to disease emergence requires the comparison of health and ecological data over time and among geographical regions. Finally, there is a need for the development and validation of diagnostic tests for wildlife species and for data on free-ranging population densities. Training of health professionals in wildlife diseases should also be improved. Overall, the article particularly emphasizes five needs of wildlife health investigations: communication and collaboration; use of synergies and triangulation approaches; investments for the long term; systematic collection of metadata; and harmonization of definitions and methods.

Prioritizing Residents' Needs: On the Creation of a Residents as Teachers and Leaders Program

Introduction: Residents are responsible for the majority of medical student teaching and directly supervise, instruct, and evaluate students. Many organizations now recommend that residency training programs include venues specifically designed to develop resident teaching skills. [See PDF for abstract].

Human Trafficking Victims and Their Children: Assessing Needs, Vulnerabilities, Strengths, and Survivorship

Given the increased awareness and attention to human trafficking, including the establishment of federal laws and policies, federally funded task forces that provide law enforcement responses, and specialized victim services, it is important to assess the impact of these procedures and services on survivors/victims of international human trafficking and their immigrant children. By federal definition, certified victims of international human trafficking are eligible for all services provided to refugees in this country, including reunification with their minor children. This research is based on a qualitative study conducted in Austin and Houston, Texas with human trafficking victims/survivors. The project’s goal was to gain an understanding of the needs of human trafficking survivors after their rescue, their overall integration into American life, and the subsequent needs of their immigrant children after reunification. The project objectives examined the factors that either promote or hinder self-sufficiency, the determination of social service needs, and policy and practice recommendations to strengthen survivors, their children and their families living both locally and abroad. For this project, nine (n = 9) in-depth interviews were conducted with adult foreign-born victims of human trafficking. Researchers gathered data using a semi-structured questionnaire that queried about factors that promote or hinder victims’ services and needs. Interviews were conducted in participants’ homes using bilingual research staff and/or trained interpreters, were digitally-recorded, and subsequently transcribed. Participation in this study was completely voluntary. Specific steps were taken to ensure that the participants’ identities were protected. Open coding of data was utilized and the data were subsequently organized or grouped into properties and later developed into contextual themes around the research questions. The findings are grounded with the use of direct quotes from participants. As a result of progressive U.S. policy, many victims of human trafficking are being reunited with their minor children. Immigrant children are one of the largest and fastest growing populations in the U.S. and for a variety of reasons are vulnerable to exploitation. Research also indicates that victims of trafficking are identified by traffickers because of their perceived “vulnerabilities” or lack of opportunities (Clark, 2003). Therefore, it is important that practices and policies are developed to address the unique needs of these families with an eye toward positive outcomes for parent and child safety and well-being. Social service providers are provided a toolkit that may be utilized before and during the reunification period.

Commentary: “Human Trafficking Victims and Their Children: Assessing Needs, Vulnerabilities, Strengths, and Survivorship"

A commentary on Busch-Armendariz, Nsonwu, and Heffron’s article, “Human Trafficking Victims and Their Children: Assessing Needs, Vulnerabilities, Strengths, and Survivorship,” noting key findings and calling for further research.

Health Care Providers' Training Needs Related to Human Trafficking: Maximizing the Opportunity to Effectively Screen and Intervene

Human trafficking is a complex and multifaceted problem that takes the form of economic, physical and sexual exploitation of people, both adults and children, who are reduced to simple products for commerce. Human trafficking in the United States also has both a domestic and an international aspect. Health care providers are in a unique position to screen for victims of trafficking and may provide important medical and psychological care for victims while in captivity and thereafter. Trafficked persons are likely to suffer a wide spectrum of health risks that reflect the unique circumstances and experiences in a trafficked victim’s life. Although trafficked victims typically have experienced inadequate medical care, once contact is made by the victim with the health care professionals, the opportunity then exists to identify, treat, and assist such victims. The range of services and supports required to appropriately respond to human trafficking victims once identified is broad and typically goes beyond just what is immediately provided by the health care professional and includes safe housing, legal advice, income support, and, for international victims, immigration status related issues. An informed and responsive community is necessary to serve both the international and domestic victims of human trafficking, and needs assessments demonstrated a number of barriers that hindered the delivery of effective services to human trafficking victims. One of the consistent needs identified to combat these barriers was enhanced training among all professionals who might come in contact with human trafficking victims. We highlight the efforts of the Houston Rescue and Restore Coalition (HRRC), a local grassroots non-profit organization whose mission focuses on raising awareness of human trafficking in the Greater Houston Metropolitan area. HRRC responded to the consistent recommendation from various community needs assessments for additional training of front line professionals who would have the opportunity to identify human trafficking victims and supported the design and pilot testing of a health professions training program around human trafficking. Dissemination of this type of training along with careful evaluation and continued refinement will be one way for health care professionals to engage in a positive manner with human trafficking victims.

Physiologic and hematologic concerns of rotary blood pumps: what needs to be improved?

Over the past few decades, advances in ventricular assist device (VAD) technology have provided a promising therapeutic strategy to treat heart failure patients. Despite the improved performance and encouraging clinical outcomes of the new generation of VADs based on rotary blood pumps (RBPs), their physiologic and hematologic effects are controversial. Currently, clinically available RBPs run at constant speed, which results in limited control over cardiac workload and introduces blood flow with reduced pulsatility into the circulation. In this review, we first provide an update on the new challenges of mechanical circulatory support using rotary pumps including blood trauma, increased non-surgical bleeding rate, limited cardiac unloading, vascular malformations, end-organ function, and aortic valve insufficiency. Since the non-physiologic flow characteristic of these devices is one of the main subjects of scientific debate in the literature, we next emphasize the latest research regarding the development of a pulsatile RBP. Finally, we offer an outlook for future research in the field.

Connecting the Dots: Families and Children with Special Needs in a Rural Community

Due to the rising number of children with disabilities, the needs of these families must be addressed. This article describes the development and implementation of a regional forum in a rural community to address education and training needs of families and professionals. The Special Needs Summit provided workshops, information, and activities for parents and professionals. Participants were invited to participate in a study through a survey soliciting feedback regarding the importance and effectiveness of the training and information received through the Summit, gaps in resources, and future educational and training needs. Overall, participants gave satisfactory ratings regarding the training and education provided during the forum, and gave direction for future programming.

Commentary on “Connecting the Dots: Families and Children with Special Needs in a Rural Community”

Starks et al. discuss an evaluation of educational initiatives to improve rural systems of care for children with special needs. Akin to the medical home neighborhood concept, building a holistic medical "village" entails improving collaboration, sharing accountability, and helping families to navigate the health care system. The article suggests that policymakers should include patient experiences of care in program evaluation, and they should build a community infrastructure for shared information and efficient communication.

Commentary on "A Needs Assessment Examining Low-Income Fathers’ Barriers to Participation in Parenting Programs"

The article provides insight on issues serving as barriers to low-income fathers' involvement with their children and with parenting programs.