Do current consent and confidentiality requirements impede or enhance research with children with learning disabilities?

Recent changes in UK legislation on data protection and confidentiality have affected key aspects of the research process. They have led to much stricter approaches to research governance, leading in turn to more stringent scrutiny by medical ethics committees and National Health Service (NHS) Trusts. Almost all stages of research are affected, from participant recruitment to storage of data, eating into researcher time and consuming significant resources. The resulting constraints are examined in relation to a research programme on development in children with learning disabilities, highlighting the practical and ethical issues arising, with informed consent a particular challenge. Being multidisciplinary, learning disability research has to satisfy numerous regulatory bodies. For participants' rights to be fully respected and for projects to be completed within time and on budget, all contributors to the research process, including funders, need to be aware of the additional implications and demands imposed by the new regulations.     

CLINICAL ISSUES WITH AFRICAN-AMERICAN AND WHITE WOMEN WISHING TO MARRY IN MID-LIFE

This article reviews the literature on the conflicts and presenting problems of mid-life single women wishing to marry and addresses the clinical issues in their treatment. Methodology and findings of a research project conducted by the authors with 49 African-American and White women who married after the age of 35 are reported. There is a review of the sociological and historical context for African-American women, which accounts for the different findings for the two subgroups studied. The paper concludes with recommendations to the clinician working with this population.     

NGOs and the Development of Bosnia and Herzegovina: Understanding Large-Scale Interorganizational Systems

Relief efforts resulting from the $5 billion Priority Reconstruction Program, launched as part of the 1995 Dayton Peace Agreement, attracted nearly 500 nonprofit organizations to the small, newly independent nation of Bosnia. Donor resources and recipient needs changed over time forcing constant adjustment in this environment, at times resulting in service overlap, inefficiency, and waste. However, the inter-relatedness of tasks in this war-torn country continually reminded players of the need for cooperative, coordinated action. Within a short time, intricate webs of interorganizational relationships emerged among donors, NGO implementers, and host nation players, at both ground and global levels. The research reported here is based on extensive interview material with a diverse range of informants.     

Participation of disabled children in individual decisions about their lives and in public decisions about service development

A literature review was carried out to establish what evidence exists about disabled children's participation in decision‐making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available.     

Mentoring in a Post-Affirmative Action World

Mentoring can be an effective strategy in improving retention of college students and faculty from fields where historical underrepresentation has occurred. This article reviews the benefits of mentoring in higher education, and identifies components of effective mentoring strategies that promote educational and career advancement. It illustrates how effective programs can be institutionalized and scaled through consortial and national collaborations. Traditional and alternative mentoring models are described through four successful programs designed to increase the academic and professional success of undergraduates, graduate students, and junior faculty. The article concludes with a set of general recommendations and caveats gleaned from the literature and programs reviewed.     

Bayesian randomized clinical trials: A decision‐theoretic sequential design

The authors propose a Bayesian decision‐theoretic framework justifying randomization in clinical trials. Noting that the decision maker is often unable or unwilling to specify a unique utility function, they develop a sequential myopic design that includes randomization justified by the consideration of a set of utility functions. Randomization is introduced over all nondominated treatments, allowing for interim removal of treatments and early stopping. The authors illustrate their approach in the context of a study to find the optimal dose of pegylated interferon for platinum resistant ovarian cancer. They also develop an algorithm to implement their methodology in a phase II clinical trial comparing several competing experimental treatments.     

The Well‐Being of Children Born to Teen Mothers

Children born to early child bearers are more likely than other children to display problem behaviors or poor academic performance, but it is unclear whether early childbearing plays a causal role in these outcomes. Using multiple techniques to control for background factors, we analyze 2,908 young children and 1,736 adolescents and young adults in the National Longitudinal Survey of Youth (NLSY79) and the NLSY79 Children and Young Adults (CNLSY79) data sets to examine whether early childbearing causes children’s outcomes. We find evidence that teen childbearing plays no causal role in children’s test scores and in some behavioral outcomes of adolescents. For other behavioral outcomes, we find that different methodologies produce differing results. We thus suggest caution in drawing conclusions about early parenthood’s overarching effect.