Understanding the determinants of consent for linkage of administrative health data with a longitudinal survey

Abstract

The Survey of Families, Income and Employment (SoFIE) is a panel income study with a health component, including data linkage to national health databases. This paper investigates factors that predict consent to data linkage. SoFIE participants were asked permission to link their SoFIE records to administrative health data in Wave 3 of data collection. Logistic regression was used to investigate the association of sociodemographic variables with consent to record linkage. Of Wave 3 participants 79.4% consented to health record linkage. Taking into account prior attrition, consent and matching the overall participation rate was 60.9%. Participants reporting Māori, Pacific and Asian ethnicity had lower odds of consenting. There was a strong relationship between the presence of co-morbid disease and consent to linkage. This study has shown that consent to link health information to survey records was high and the survey provides a rich and unique dataset for longitudinal analyses.     

Patients' Evaluations of Gynecologic Services Provided by Nurse Practitioners

Abstract

The development, operating principles, and users' evaluations of a broad-based gynecologic program emphasizing effective birth control on a university campus are discussed. A major feature that is explored is the use of nurse practitioners as the primary service providers. The forces that resulted in the formation of the program and the methods used to enhance its effectiveness are described. The evaluations of 3,527 users over a three-year period are indicated by summarizing responses to a questionnaire covering the following topics; whether providing such a service was helpful, likelihood of arranging for the service elsewhere if unavailable at the health center, attitudes of staff, medical procedures used, availability of services, and the opportunity to thoroughly discuss concerns. The evaluations were seen as extremely supportive of both the program and the use of nurse practitioners in this setting.     

Multivariate parabolic bioassay

A general linear model approach to quantitative parabolic bioassays with multivariate responses is proposed. The point and interval estimator of the relative potency and an associated test for validity is presented. The relationships with known univariate methods are illustrated.     

Exploring Autonomy in Group Work Practice with Persons with Intellectual Disabilities

Preserving the autonomy of individuals with intellectual disabilities in group work is challenging. Group workers often experience inadequate guidance about autonomy—an individual's capability to act independently without influence by others. Group workers can enhance autonomy through group activities that promote self-efficacy, empowerment, and the ability to make decisions. Fostering autonomy requires that the group workers be knowledgeable and aware of personal biases, analyzing their expectations and actions. To promote the autonomy of persons with intellectual disabilities in group work practice, the authors make recommendations to strengthen the IASWG Standards for Social Work Practice with Groups in this area.     

The Issue of Consent in Research that Administers Drugs of Addiction to Addicted Persons

In addiction, impaired control over drug use raises questions about the capacity of addicted persons to consent to participate in research studies in which they are given their drug of addiction. We review the case for doing such research, and the arguments that addiction does, and does not, prevent addicted persons from consenting to such research. We argue for a more nuanced view that acknowledges that while in some situations addiction impairs decision-making capacity, it does not eliminate such capacity. We conclude with some suggestions for recruiting addicted subjects and designing experiments in ways to obtain free and informed consent.     

“Once in a Blue Moon … Anything is Possible”

Each of the articles in this volume highlights concerns and issues related to cultural diversity and community development. Together they provide significant guidance for further work in theory construction and curriculum development, and offer direction for effective practice and research. Leadership development, self-help, and empowerment practice approaches are presented for work in communities of color and neo-gemeinschaft communities. Effective methods and strategies for working with diverse populations in changing social and economic times are provided for community practitioners and faculty.     

The Old is New Again

Community agriculture and conservation initiatives have become increasingly important components of sustainable community development strategies, particularly in disadvantaged neighborhoods. This study examines a community conservation program whose goal was to foster revitalization through the establishment of floral and vegetable gardens primarily in distressed areas. Respondents indicated that the program contributed to revitalizing neighborhoods, as well as their beliefs and behavior regarding conservation issues, sense of community, and volunteerism. Motivation for involvement in the program was high. The most important reasons for involvement were to beautify and give back to the community and to support conservation of green space. The more volunteers were engaged in the program, the greater their motivation, conservation ethic, and volunteerism in other community activities. This study illustrates the importance of community gardening and conservation efforts in improving and beautifying distressed communities, promoting sustainable community development, and increasing civic engagement and conservation practices. Implications for practice are also discussed.     

“Rather a manager and networker than a researcher”: converging technologies in the clinic

Technological developments brought about new approaches to and new insight into the functioning of the brain and neurological disorders. More specifically, advancement in the areas of neuroimaging, genomic technologies and molecular biology is conceived as a pathway to more differentiated diagnosis and appropriate treatment. In this regard, the convergence of technologies in the area of health care and medical research has significantly increased during the past two decades. The aim of this article is to better understand how the convergence of technologies in the field of neuroscience takes place at the micro-level of knowledge production, namely the clinic. It is based on the results of an ethnographic study conducted at an Epilepsy Monitoring Unit in Vienna. I start from the assumption that the convergence of technologies in the diagnosis and treatment of epilepsy anticipates a specific means of knowledge production that impacts on the understanding and definition of neurological conditions and the identity of patients and medical doctors simultaneously. One important result concerns the scientization of the way that people with epilepsy perceive, explain and understand epilepsy and the brain. On the one hand respective narratives seem to support the scientific definition of epilepsy; on the other, the failure of seizure control tends to induce a specific understanding of the brain as having unpredictable and uncontrollable mastery over body, memory and soul.     

Assessing Life in the Face of Death: Moral Drama at the 1952 Trial of the Jewish Anti-Fascist Committee

ABSTRACT

The essay is a close analysis of the text of the 1952 secret trial of the members of the Jewish Anti-Fascist Committee (JAFC). The trial was an occasion of high drama in which many of the participants, facing death, responded with speeches and spontaneous outbursts that could not serve as any imaginable defense, but constituted a moral evaluation of their lives. This behavior was much unlike anything seen in the Soviet show trials of the 1930s. Though many JAFC defendants exhibited aspects of public self-examination and contrarian pride in their own self-worth, the three most persistent were Lina Shtern, Boris Shimeliovich, and Solomon Lozovsky.     

Predictors of father‐son communication about sexuality

Examining the factors that influence adolescents’ sexual behaviors is crucial for understanding why they often engage in risky sexual behaviors. Using social cognitive theory, we examined predictors of father‐son communication about sexuality. Fathers (N = 155) of adolescent sons completed a survey measuring 12 variables, including self‐efficacy and outcome expectations. We found that (a) son's pubertal development, father's sex‐based values, father's education, father's communication with his father, outcome expectations, and general communication accounted for 36% of the variance in information sharing communication and (b) son's pubertal development, outcome expectations, general communication, and father‐son contact accounted for 20% of the variance in values sharing communication. Study findings can aid professionals in designing guidelines and programs to promote father‐son general communication and sex‐based communication.