Challenges,Dilemmas and Factors Involved in PGD Decision-Making: Providers’ and Patients’ Views,Experiences and Decisions

Providers and patients are considering and pursuing PGD for ever-more conditions, but questions arise concerning how they make, view and experience these decisions, and what challenges they may face. Thirty-seven in-depth semi-structured interviews were conducted (with 27 IVF providers and 10 patients). Patients and providers struggled with challenges and dilemmas about whether to pursue PGD in specific cases, and how to decide. Respondents varied in how they viewed, experienced and made these choices, and for which conditions to pursue PGD (from lethal, childhood-onset conditions to milder, treatable, or adult-onset disorders). Several factors were involved, including differences in gene penetrance, predictability, and phenotypic expression, and disease severity, age of onset, treatability, stigma and degree of disability. Providers and patients face questions regarding possibilities of screening for more than one condition in one set of embryos, and limitations of PGD (e.g., inaccurate results). Characteristics of providers (e.g., amount of PGD experience, understandings of genetics, and use of genetic counselors), and of patients (e.g., related to broader moral and social attitudes) can also affect these decisions. These data, the first to examine several key questions concerning PGD, suggest that providers and patients confront several dilemmas. These findings have critical implications for future practice, guidelines, education and research.     

Flow Experience and Autotelic Personality in Japanese College Students: How do they Experience Challenges in Daily Life?

Using the experience sampling method (ESM) and a sample of Japanese college students, the present study conducted two major examinations. First, the present study examined whether flow theory's most basic and general hypothesis, that quality of experience is a function of perceived challenges and skills, was applicable to the Japanese sample. Second, the present study identified autotelic and non-autotelic groups of Japanese college students and explored the nature of autotelic personality, focusing on how perceptions of challenges and skills affected the quality of these two groups' experiences, and how these two groups balanced their perceived challenges and skills when engaged in daily activities. The results showed that high challenge/high skill situations created an optimal state of mind for the Japanese college students, as flow theory postulates. Moreover, a Japanese index of psychological well-being referred to as Jujitsu-kan was reported as being high during periods of flow. The exploratory examination of the autotelic personality showed that the autotelic students' levels of perceived challenges and skills were more balanced than those of their non-autotelic counterparts. Moreover, the autotelic students showed a tendency to position themselves in situations where their perceived challenges were higher than their perceived skills, whereas the reverse was true for the non-autotelic students. Implications of these findings were discussed in terms of the universality of flow experience and autotelic personality, and their potentials to increase psychological well-being for the Japanese, as well as people across cultures.     

Welcome to “the Rock”: Service Providers’ Views on Newcomer Youth Integration in Newfoundland and Labrador

This study investigates the needs of newcomer youth in Newfoundland and Labrador, and the services provided to them in the provincial capital, St. John’s, through the lens of service providers. We employ Bronfenbrenner’s bioecological model (1999, 2005) as the conceptual framework to explore how various ecological systems interact with one another to influence the development of newcomer youth. Data were drawn from 33 semi-structured interviews with personnel in various immigrant and refugee support agencies, medical and counseling units, municipal recreational offices, and educational programs, as well as ten observations of their programs. Our findings indicate that the current services and programs provide effective support in a number of areas. However, closer collaboration can be established between schools and community organizations, among different service agencies, and involving the business community. Service gaps identified include a lack of transportation to and from school, insufficient academic bridging programs, and no career counseling catering to newcomer students. We argue that service agencies should consider shifting some of their programs to the newcomer youth’s microsystems of school and family, and that the provincial educational authorities need to look into the transportation issue that infringes upon the rights of these students to appropriate school instruction.     

Experience and Performance: Contrasting ‘Identity’ in Feminist Theorizings

Connecting identity, broadly defined to recent advances in educational research, this paper takes up two different feminist treatments based in pragmatism and poststructuralism. The first is from Charlene Haddock Seigfried on experience, and the second is from Peggy Phelan on performance. The first is in keeping with a dominant tradition to secure identity through visibility and the second suggests critique through a turn to invisibility. The first arises out of Dewey's naturalism and the second through Lacan, performance art, and anti-representation. At bottom is suggestion that an entire narrative tradition in educational research is potentially self-defeating.     

An Exploration of the Experience of Huntington’s Disease in Family Dyads: An Interpretative Phenomenological Analysis

Huntington’s disease (HD) is a hereditary, late onset, neurodegenerative disorder. Children of affected parents have a 50 % chance of inheriting HD. Research into the psychological consequences of HD for the family has focussed on individual family members, but little is known about the ways in which its impact is jointly experienced by members of these families. This is particularly important due to the hereditary nature of HD. To address this, the current study examined the experiences of dyads within affected families. Seven parent/adult child dyads were interviewed jointly about their experiences and relationships with their family and each other and interpretative phenomenological analysis was used to analyse the resultant data. Identified themes were: “A spectre hanging over us”: HD as a presence within the family, “Us against the world”: Protection, knowledge and control, and “That could be me in 50 years”: Cyclical changes in identity and role. These findings are examined in relation to previous research and indicate the need for an increased understanding of the needs of HD families. Clinical implications and suggestions for further research are discussed.     

Branding ‘Canadian Experience’ in Immigration Policy: Nation Building in a Neoliberal Era

This paper examines the branding of ‘Canadian experience’ in Canadian immigration policy as a rhetorical strategy for neoliberal nation-building. Since 2008, the Canadian government has introduced an unprecedented number of changes to immigration policy. While the bulk of these policies produce more temporary and precarious forms of migration, the Canadian government has mobilized the rhetoric of ‘Canadian experience’ as a means to identify immigrants who carry the promise of economic and social integration. Through a critical discourse analysis of Canadian print media and political discourse, we trace how the brand of Canadian experience taps into the affective value of national identity in an era of global economic insecurity. We also illustrate how the discourse of Canadian experience (CE) remains ideologically deracialized, such that the government’s embrace of CE as an immigrant selection criterion dismisses the discriminatory effects that this discourse is shown to have for racialized immigrants in Canada.     

Service Coordination and Children’s Functioning in a School-Based Intensive Mental Health Program

Coordination of mental health services in children with serious emotional disturbance (SED) has shown a preliminary relationship to positive outcomes in children. Yet, research in this area is sparse. Therefore, the relation between service coordination activities and adaptive functioning was examined for 51 children SED who were treated in the school-based Intensive Mental Health Program for elementary school students (IMHP; average treatment length was 12?months; mean age 9.37 at intake). Systematic review of detailed case records identified 16,669 episodes of service coordination that could be coded reliably for frequency, quality, and purpose (planning, linking, monitoring) of the service coordination component. Adaptive functioning was measured by Child and Adolescent Functional Assessment Scale (CAFAS) ratings and daily points earned on the behavior management system of the IMHP at intake, 6, 12?months, and discharge. Findings indicated that the frequency, quality, and purpose of the service coordination component varied from case to case and by time in treatment. Although service coordination activities overall decreased as treatment progressed, concentrated high quality service coordination (measured by frequency, quality, and component of service coordination) consistently predicted improved functioning on both CAFAS ratings and daily points earned. Results have both practice and policy implications for training interagency teams and clinicians on when and how to optimally coordinate services.     

Making Sense of Suffering and Death: How Health Care Providers’ Construct Meanings in a Neonatal Intensive Care Unit

Biomedical technology has progressed at a pace that has created a new set of patient care dilemmas. Health care providers in intensive care units where life-sustaining therapies are both initiated and withdrawn encounter clinical scenarios that raise new existential, theological, and moral questions. We hypothesized that there might be broad patterns in how such staff understand these questions and make sense and meaning from their work. Such meaning making might be the key to working with the critically ill and dying while helping to create and sustain a meaningful context for personal living. This article presents themes evident in an in depth analysis of open-text responses to a spiritual and religious questionnaire survey completed by staff in one neonatal intensive care unit. The data reveal the central roles of perceived infant suffering and death in these providers’ work experience and details how they understand the ultimate meaning of the suffering and death. We investigate patterns in how different providers articulate their individual attributes and motivations for working in intensive care. We found a surprising range of religious, spiritual, existential, and other meaning-making systems that underpin how staffs understand their work and how, certain of them, even define their purpose in life as caring for critically ill infants and their families.Wendy Cadge received her Ph.D. in sociology from Princeton University. She is currently an Assistant Professor of Sociology at Bowdoin College and a Robert Wood Johnson Foundation Scholar in Health Policy Research at Harvard University. Her research examines a range of topics related to religion in contemporary American life including religious pluralism, religion & immigration, religion & sexuality, and religion & the arts. Her first book is titled, Heartwood: the First Generation of Theravada Buddhism in America (Chicago: University of Chicago Press, 2005). Dr. Cadge’s current research focuses on the history, presence, and significance of religion and spirituality in American hospitals. Elizabeth A. Catlin is a senior faculty neonatologist at the Massachusetts General Hospital (MGH) in Boston and an Associate Professor of Pediatrics, Harvard Medical School. Dr. Catlin completed general pediatric training at Tufts University School of Medicine, Boston, followed by subspecialty training in neonatal–perinatal medicine at Brown University School of Medicine, Providence, Rhode Island. Dr. Catlin served as Chief of Neonatology at MGH from 1992 to 2004. She completed a Kenneth B. Schwartz Foundation fellowship in Clinical Pastoral Education in 1999. Dr. Catlin has a long-standing interest in spiritual distress, tragic decision-making, suffering, bereavement, and religious components of patient care in neonatal intensive care. Correspondence to Elizabeth A. Catlin, ecatlin@partners.org.     

Varieties of Religious and Pornographic Experience: Latent Growth in Adolescents’ Religiosity and Pornography Use

The relationship between adolescent religiosity and pornography use has been longitudinally tested only in the United States. Given the social relevance of hypothesized mechanisms underlying the association, this study offers a three-wave longitudinal assessment of parallel latent growth in the two constructs carried out in a Southern European country. Using responses of 1,041 Croatian adolescents from the capital city (M_age = 16.14 years, SD = .45; 64.6% of female students) and latent growth curve modeling approach, we explored links between individual trajectories of change in religiosity and pornography use over a period of 24 months. In the observed period, religiosity decreased and pornography use increased among both male and female adolescents, but their dynamics were independent of each other—pointing to other (unmeasured) processes responsible for both adolescents’ sexualization and secularization. Important to note, the findings also pointed to an important role of age at first exposure to pornography for its frequency of use in middle to late adolescence.     

“It’s Challenging on a Personal Level”—Exploring the ‘Lived Experience’ of Australian and Canadian Prenatal Genetic Counselors

Prenatal genetic counselors work with clients who are at risk of having a child with a fetal anomaly, or who have been diagnosed with a fetal anomaly. This can raise challenging ethical, moral and legal issues for both clients and counselors. Few studies have explored whether this type of work impacts on genetic counselors themselves. Interviews were conducted with 15 prenatal genetic counselors, five from Toronto, Canada and ten from Melbourne, Australia. A qualitative approach was used to allow for an in-depth exploration of the experiences of genetic counselors working in the prenatal setting. While participants reported that working in a prenatal setting affected them in several ways, this paper focuses on one particular unanticipated finding—that of the impact experienced by counselors from both countries while working when pregnant.     

Children’s Perspectives and Evaluations of Safety in Diverse Settings and Their Subjective Well-Being: A Multi-National Approach

There is a need to explore variations in children’s safety perceptions for different settings (home, school and neighbourhood) and their relationship with subjective well-being (this including satisfaction with safety and satisfaction with life as whole) by comparing a variety of cultural contexts. A further objective is to explore to what extent gender, age group (10 and 12-year-olds) and level of SWB (measured using the SLSS -Student’s Life Satisfaction Scale- and the BMSLSS -Brief Multidimensional Student’s Life Satisfaction Scale) play a role in this prediction. Results obtained through binary logistic models with samples from Spain (n = 2,724), Algeria (n = 2432), South Africa (n = 2192) and Israel (n = 1914), show that children’s perceptions of safety are predicted by their different perceptions and evaluations of school, home and the nearby area. Perceptions of safety in the nearby area and satisfaction with safety (O.R. = 1.080) contribute to predicting higher levels of satisfaction with life as a whole to a greater extent than scores on the SLSS (O.R. = 1.036) and the BMSLSS (O.R. = 1.050) scales. The country participants live in (especially when combined with satisfaction with safety) and, to a lesser extent gender, also make important contributions. The age group they belong to plays a significant role in predicting higher perceptions of safety at home, in the area nearby, at school, and in predicting higher satisfaction with safety. Results open the door to the introduction of specific interventions (e.g. improving parent-child communication, enhancing public spaces for children to play and promoting children’s participation at school), aimed at promoting higher satisfaction with safety and also indirectly at higher satisfaction with life as a whole, on the basis of achieving positive changes of those factors which make the highest contribution.

     

Attitudes Toward Women and Motherhood: Their Role in Australian Women’s Childbearing Behaviour

Financial and employment concerns are frequently identified as salient factors in women’s childbearing behaviour in low fertility, developed countries. The contribution of attitudinal variables is not well understood. The aim of this study was to investigate the relationship between attitudes toward women and motherhood and women’s childbearing desires and outcomes. A broadly representative sample of 569 women aged 30–34 years living in Victoria, one Australian state, was recruited from the Australian Electoral Roll. Participants completed a self administered anonymous questionnaire which included a new measure of attitudes toward women and motherhood. Women with more traditional attitudes had larger desired and actual family sizes. The findings indicate that attitudes toward women and motherhood are related to women’s childbearing behaviour.     

Spouse and Family Functioning Before and After a Marine’s Suicide: Comparisons to Deaths by Accident and in Combat

The impact of service member suicides on families is not well understood. Civilian studies have demonstrated that family survivors of suicide deaths experience complicated grief, feel guilt and shame, and often do not receive sufficient social support. In this exploratory study, spouse survivors of Marines who died by suicide (N = 17), accident (N = 19), and in combat (N = 34) retrospectively reported on their immediate pre- and postmortem and current personal and family functioning. Nonparametric analyses revealed that several between-group differences existed. Observation of the means suggested that the spouses and families of Marines who died by suicide exhibited significantly poorer pre- and postmortem functioning compared with those whose spouses died in combat. Specific challenges included low family cohesion, high family conflict, perceived stigma, and shame. There were no differences in current spouse or family functioning, and there was weak evidence for posttraumatic growth among surviving spouses of those dying by suicide. These results should be considered preliminary and interpreted with caution given several methodological challenges.     

What’s in a Dao?: Ontology and Semiotics in Laozi and Zhuangzi

The present essay examines the conflicting ontological assumptions that one can find behind the word dao in the texts of the Laozi and Zhuangzi and argues that the relative indifference to these texts toward whether or not dao has an ontic reality should not be considered a flaw of early Daoism. Rather, the historical process by which the term dao collects various possible ontological implications can be thought of as a philosophical stance in its own right. That is, if the terms which one is obliged to use in discussing the immaterial necessarily hide, at least as much as they explain, the nature of Being, then it is a reasonable response to decline to ground one??s ethics in an ontology, and that while the resulting philosophy may not qualify as a fully-adumbrated system, this does not diminish its potential usefulness.     

Diverse Perceptions of the Informed Consent Process: Implications for the Recruitment and Participation of Diverse Communities in the National Children’s Study

We examined the experiences, perceptions, and values that are brought to bear when individuals from different ethnic and cultural backgrounds consider participating in health research. Fifty-three women from Latino, Asian American, Middle Eastern, or Non-Latino, White backgrounds participated in seven English or Spanish focus groups facilitated by trained investigators using a standard protocol. Investigators described the National Children’s Study (NCS) and then asked questions to elicit potential concerns, expectations, and informational needs. Group sessions were audio-recorded, transcribed verbatim, and analyzed using qualitative thematic methods. A major theme that emerged during focus groups was participant self-identification as a member of a cultural group or community when raising issues that would influence their decision to participate in research. A related theme was the belief by some that communities may differ in the ease of participation in the NCS. Identified themes related to the informed consent process included perceived risks, anticipated burden, perceived benefits, informational needs, and decision-making strategies. Although themes were shared across groups, there were cultural differences within themes. Findings indicated that individuals from diverse backgrounds may have different perspectives on and expectations for the research process. To effectively recruit representative samples, it will be important to address a range of issues relevant for informed consent and to consider the impact of participation on both individuals and communities.     

“I Didn’t Know It Existed Before You Called”: Protestant Clergy Experience, Education and Perceptions Regarding Genetics

Despite the intrinsic role religious/spiritual (hereafter, R/S) beliefs have in patient clinical decision-making and crisis coping, there is little research exploring the relationship that exists between clergy (professionals who provide R/S counsel and guidance) and genetic counseling patients. This qualitative, exploratory study was designed to explore Protestant clergy (N?=?8) perceptions of and experience with genetics-related issues. Data analysis revealed that a wide range of R/S perceptions regarding genetics-related issues exist within Protestantism, Protestant clergy have a basic understanding of genetic testing and conditions, and while directive counseling is inherent to Protestant clergy counseling, there appears to exist two opposing styles: unbiased and biased. Based on this information, there are two main implications for genetic counseling clinical practice. First, R/S assessments need to be increasingly implemented into genetic counseling sessions, so that the psychosocial needs of patients with specific R/S beliefs can be identified and addressed. An increase in R/S assessments may be accomplished by increased exposure in genetic counselor training, continuing education opportunities, and by establishing relationships with board-certified, professional chaplains. Second, genetic counselors can influence the genetic education and experience of clergy by raising awareness within their own R/S assemblies. Doing so can also serve to further educate genetic counselors in the R/S beliefs of their own traditions, thus increasing sensitivity, empathy and the quality of care provided.     

‘Meaning-dawning’ in Wittgenstein’s Notebooks: a Kierkegaardian reading and critique

In this paper, I am going to propose a new reading of Wittgenstein’s cryptic talk of ‘accession or loss of meaning’ (or the world ‘waxing and waning’ as a whole) in the Notebooks that draws both on Wittgenstein’s later work on aspect-perception, as well as on the thoughts of a thinker whom Wittgenstein greatly admired: Søren Kierkegaard. I will then go on to argue that, its merits apart, there is something existentially problematic about the conception that Wittgenstein is advocating. For the renunciation of the comforts of the world that Wittgenstein proposes as a way of coping with the brute contingencies of life seems only to come as far as what Kierkegaard calls ‘infinite resignation’, and this falls far short of the joyful acceptance of existence that appears necessary for inhabiting what Wittgenstein calls a happy world. That is to say, I will show that what Wittgenstein’s proposal lacks is a way of reconnecting with the finite after one has renounced it – the kind of transformation of existence achieved by the person Kierkegaard calls the ‘knight of faith’.