Margaret Huyck

Latino Caregivers of Relatives with Alzheimer's Disease

Abstract This review of the literature discusses the experience of Latinos who provide care to a family member with Alzheimers Disease and Related Disorders (ADRD). This discussion is imperative in light of the present demographic changes and in light of current findings suggesting that the risk for dementia is significantly higher for Hispanic elderly. All studies reviewed reported that the ADRD Latino caregiver is most likely to be a female caring for her parents or her parents-in-law. Despite the relatively low availability of informal support and the high levels of depression among ADRD Latino caregivers, most studies reported that ADRD Latino caregivers underutilize formal services. The major implications of the present review are that a heterogeneous perspective of the Latino community should be adopted by taking into consideration within group differences. In addition, systematic study of outreach and therapeutic interventions aimed specifically towards ADRD Latino caregivers is recommended.

Looking ahead: planning for the first human intracortical visual prosthesis by using pilot data from focus groups of potential users

In planning for our research teams first human implant of a technologically advanced intracortical visual prosthesis we have conducted three focus groups with blind persons from a pool of likely participants. Guided by the principles of the Independent Living movement and Participatory Action Research (PAR), we asked the participants to share their thoughts and concerns about the procedure. The preliminary results reveal that achievement of the desired highest ethical of informed consent will require extensive pre-operative learning opportunities, such as those provided by these focus groups. Persons who are blind may be motivated to participate in research like this based on a need to know, understand, and explore ones environment, to leave a legacy, and to experience some restored perception.

The effects of sex-role traits on three aspects of psychological well-being in a sample of middle-aged women

The research assessed the effects of sex-role attributes on the mental health of a middle-class sample of 97 middle-aged women. Participants completed the PRF-Andro and questionnaires measuring three aspects of psychological well-being. More feminine women reported a greater degree of symptom distress (p<.05); more masculine women reported higher self-esteem and a greater sense of mastery (ps<.01). However, differences in (a) home versus work involvement and (b) reactions to the empty nest implied that androgynous and masculine women derived their sense of mastery from different social roles. The importance of examining role commitments and satisfactions in understanding the relationships between sex roles and mental health among different age groups of adult women is discussed.

Responses of potential users to the intracortical visual prosthesis: final themes from the analysis of focus group data

Although visual implant prosthesis projects are advancing, little exists in the literature on the factors that would lead an individual to volunteer for such an experimental procedure. Many ethical issues are raised in recruiting and involving individuals in experimental implant procedures, most involving autonomy and informed consent. This report provides perspectives of 30 totally or legally blind older individuals on their expectations about a potential visual implant, their motivations for volunteering, and the processes they would use for decision making. Data were collected in eight focus groups, using semistructured focus group processes. Among the primary reasons a person with seriously impaired vision would volunteer for a new implant procedure are helping others, exploring the unknown, and restoring perception. The decision to participate in an experimental brain implant procedure is complex. Potential recipients have many questions about the device and the procedure, the perceived risks, and the commitment of a research team to the participants once a device has been implanted. Some would involve their family in a decision; others are more comfortable making the decision independent, after consulting others. The themes identified provide a guide for recruiting and ensuring an ethical experience for participants in experimental protocols. Implications for Rehabilitation The motivation to participate in vision restoration experiments may include altruism and the experience of pioneering research. Phosphenes (dots of light in the visual field) can improve safety and independence of an individual who is blind. The decision to participate in vision restoration experiments is unique for each individual and may include consultation with family members, friends, spiritual guides, individuals who are blind and health professionals.

Gender Roles and Gender Identity in Midlife

Publisher Summary This chapter explains the gender roles and gender identity in midlife. Gender refers to the social and psychological dimensions of sex. Gender role is used to describe the social prescriptions or stereotypes associated with each sex; it may also be used to describe the extent to which a particular individual complies with the social expectations. Gender schema includes all of ones beliefs about attributes of males and females and how these attributes are related. Gender identity refers to the ways an individual defines herself or himself in terms of femininity and masculinity; this is the more personal, private sense of oneself in terms of their body and how they relate to the gender role expectations. Social norms regarding gender roles and personal developmental changes are changing. Gender differences persist in the likelihood that a man or woman will be in the paid labor force during the middle years, in the kinds of work available, and in compensation and this is hard to believe the labor force participation rates for women have increased substantially. Although many individuals are employed because they find their work fulfilling and personally satisfying, most are employed because they need to earn a living and gain access to benefits such as health care and retirement pensions. Access to benefits associated with employment also varies by sex and family arrangement. One of the most crucial benefits is access to an employer sponsored health care plan.

Gender-linked self-attributions and mental health among middle-aged parents

Abstract Middle-aged mothers ( n = 149) and fathers ( n = 127) completed self-report measures of gender-linked attributes (the PRF-Andro), self-esteem (Rosenberg), sense of mastery, and psychosomatic symptom distress (the SCL-90), as part of a larger interview study of inter generational relations. Factor analyses revealed three major factors in the masculinity and three in the femininity scales. Factor scores were significantly related to sex and occupational status; some factor scores were associated with age. Mental health measures were related to the gender factors, with distinctive relationships for each group defined by sex, occupational status, and age. Gender-linked attributoons were most predictive of mental health measures among older (55+), upper status “gender sensitive” men. The older upper status women seemed most “gender-transcendent,” since none of the gender factor scores significantly predicted their mental health scores.

Perspectives of optic nerve prostheses

Abstract A number of projects exist that are investigating the ability to restore visual percepts for individuals who are blind through a visual prosthesis. While many projects have reported the results from a technical basis, very little exists in the professional literature on the human experience of visual implant technology. The current study uses an ethnographic methodological approach to document the experiences of the research participants and study personnel of a optic nerve vision prosthesis project in Brussels, Belgium. The findings have implications for motivation for participating in clinical trials, ethical safeguards of participants and the role of the participant in a research study. Implications for Rehabilitation Rehabilitation practitioners are often solicited by prospective participants to assist in evaluating a clinical trial before making a decision about participation. Rehabilitation professionals should be aware that: The decision to participate in a clinical trial is ultimately up to the individual participant. However, participants should be aware that family members might experience stress from of a lack of knowledge about the research study. The more opportunities a participant has to share thoughts and feelings about the research study with investigators will likely result in a positive overall experience. Ethical safeguards put in place to protect the interests of an individual participant may have the opposite effect and create stress. Rehabilitation professionals can play an important role as participant advocates from recruitment through termination of the research study. Participant hope is an important component of participation in a research study. Information provided to participants by investigators during the consent process should be balanced carefully with potential benefits, so it does not destroy a participant’s hope.

Work in progress — Can one measure of ethical “competence” be useful in varied undergraduate, multidisciplinary settings?

Many educators would like to believe they are helping their students prepare to become intelligent, skilled, responsible — and ethical — workers as they move into adult life. Most research has concluded that few schools have serious, well-designed programs to assess the ethical competence of their students and to ensure that the desired outcomes are met. Educators agree that it is desirable to measure the outcomes of our educational processes. But to measure, one must first identify the desired competencies. This has proven difficult. We will report on a multi-university research program designed to develop measure(s) of ethical “competence”, in order to identify best practices in developing those competencies. We will report on the three measures we are currently designing to measure ethical competence in these settings.

Work in Progress - Evaluating the impact of reflective thinking on learning objectives in undergraduate multidisciplinary project teams

The interprofessional projects program (TPRO) is a project-based course through which all undergraduate students are expected to develop their multidisciplinary teamwork, communication, and project management skills and knowledge while learning how to resolve ethical issues. Evaluation of these learning objectives is done through various performance measures of the program including a teamwork survey, a self-assessment of the learning objectives, and scores at IPRO Projects Day. A continued pilot for assessment is reflections, a written assignment team members complete 3 times over the semester. The fourth semester of our reflections pilot at Illinois Institute of Technology (IIT) includes questions about project management, teamwork, communications, and ethical issues, which are the meta-learning objectives of the program. We have compared the 11 teams that used reflections and 24 teams that did not use reflections in the Fall 06 semester, and 11 teams that used and 28 that did not in the Spring 07 semester. Overall, we find little meaningful differences between the teams on the performance measures.

Measuring the Levels of Reflective Judgment in Interprofessional Projects

The interprofessional projects program (IPRO) at IIT is comprised primarily of undergraduate student project teams focused on solving a real world problem. Reflection in service-learning and applied settings has been found to increase student ability to analyze problems. In the spring of 2006 we implemented a reflections pilot to test the level of reflective judgment in the students involved in the IPRO program. Reflections were coded to assess the degree of reflective judgment. Our results from spring 2006 indicate students function at pre to quasi reflective level of reflective judgment. The data has provided information to improve our reflections within the IPRO program.