Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

The burden of living with an undiagnosed condition is high and includes physical and emotional suffering, frustrations, and uncertainty. For patients and families experiencing these stressors, higher levels of empowerment may be associated with better outcomes. Thus, it is important to understand the experiences of patients with undiagnosed conditions and their families affected by undiagnosed conditions in order to identify strategies for fostering empowerment. In this study, we used the Genetic Counseling Outcome Scale (GCOS-24) to assess levels of empowerment and support group participation in 35 adult participants and 67 parents of child participants in the Undiagnosed Diseases Network (UDN) prior to their UDN in-person evaluation. Our results revealed significantly lower empowerment scores on the GCOS-24 in adult participants compared to parents of child participants [t(100)?=???3.01, p?=?0.003, average difference?=???11.12, 95% CI (??3.78, ??18.46)] and no significant association between support group participation and empowerment scores. The majority of participants (84.3%, 86/102) are not currently participating in any support groups, and participation rates were not significantly different for adult participants and parents of child participants (11.4 vs. 19.7%, respectively, FE p?=?0.40). Open-ended responses provided additional insight into support group participation, the challenges of living with undiagnosed conditions, and positive coping strategies. Future research will evaluate the extent to which empowerment scores change as participation in the UDN unfolds.     

Teenagers’ Perceptions of Volunteering Following the 2010–2011 Canterbury Earthquakes,New Zealand

ABSTRACT

Limited research exists of teenagers’ involvement in the response phase of a natural disaster. There is little, for example on volunteering, and of specifically what motivates teenagers to volunteer and the activities they participate in. Therefore, this study investigated teenagers’ involvement and perceptions of volunteering following the 2010–2011 Canterbury, New Zealand, earthquakes. Six focus groups were conducted with 31 teenagers aged 16–18 who had experienced the earthquakes. The data were analyzed using thematic analysis leading to four themes, namely sense of control, sense of purpose, shift in perspective, and restrictions. Findings emphasize the importance of organizing youth-focused volunteer groups, due to volunteering potentially reducing teenagers’ psychological distress postdisaster.     

Editorial: Special Issue on Quality of Life among Children and Adolescents in Chinese Societies

Applied Research in Quality of Life -     

Universal Prevention Exposure as a Moderator of the Community Context: Findings from the PROSPER Project

This study examined how participation in a universal family skills‐building program may interact with community risks and resources to produce youth outcomes. Prior research has noted community‐level variability in risk and protective factors, but thus far no study has examined the role that participation on a community‐wide intervention may play in moderating the effects of community risks or resources. The study included 14 communities (seven in Iowa, seven in Pennsylvania) that implemented a family focused evidence‐based program as part of the PROSPER project. Community level variables included both risk factors (percent of low income families, the availability of alcohol and tobacco, norms regarding adolescent substance use, incidence of drug‐related crimes) and community resources (proactive school leadership, availability of youth‐serving organizations, and student involvement in youth activities). The proximal youth and family outcomes included youth perceptions of their parents’ management skills, parent–child activities, and family cohesion. Results indicated that the Strengthening Families Program:10–14 may have moderated the impact of the community risks and resources on community‐level youth outcomes; risk levels meaningfully associated with community‐level change in program participants, though these results varied somewhat by outcome. Generally, higher levels of resources also meaningfully associated with more positive change after participating in the family‐focused intervention. These results suggest that the effect of some evidence‐based programs may be even stronger in some communities than others; more research in this area is needed.     

Visual Similarity of Words Alone Can Modulate Hemispheric Lateralization in Visual Word Recognition: Evidence From Modeling Chinese Character Recognition

In Chinese orthography, the most common character structure consists of a semantic radical on the left and a phonetic radical on the right (SP characters); the minority, opposite arrangement also exists (PS characters). Recent studies showed that SP character processing is more left hemisphere (LH) lateralized than PS character processing. Nevertheless, it remains unclear whether this is due to phonetic radical position or character type frequency. Through computational modeling with artificial lexicons, in which we implement a theory of hemispheric asymmetry in perception but do not assume phonological processing being LH lateralized, we show that the difference in character type frequency alone is sufficient to exhibit the effect that the dominant type has a stronger LH lateralization than the minority type. This effect is due to higher visual similarity among characters in the dominant type than the minority type, demonstrating the modulation of visual similarity of words on hemispheric lateralization.     

Perfectionism and the pursuit of personal goals: A self-determination theory analysis

Previous studies have shown that self-critical and personal standards forms of perfectionism are associated with progress on personal goals in opposite ways. The present study used a 5-wave prospective longitudinal design to examine what motivational factors account for the finding that self-critical perfectionism has been reliably associated with poor goal progress whereas personal standard perfectionism has been associated with good progress. Specifically, we adopted a self-determination theory perspective to examine the role of autonomy in mediating the effects of perfectionism. Our results replicated previous findings linking the two forms of perfectionism with opposite patterns of goal progress. Importantly, the results suggested that the negative goal effects of self-critical perfectionism are mediated by lower levels of autonomous goal motivation. The results also demonstrated links from personal standards perfectionism to greater autonomous goal motivation. Interestingly, the effects of self-critical perfectionism on goal progress appeared to be dynamic over time and implicated affective mechanisms. The results of the investigation point to the value of adopting a self-determination theory perspective to understand perfectionism.     

The Neighbourhood Youth Inventory: development and validation

This paper describes the development and validation of an inventory to uncover youths' experiences in their neighbourhoods. The Neighbourhood Youth Inventory (NYI) was developed from conversations with youths in Grades 7, 9 and 11. This paper reports the psychometric analyses of the NYI. Responses from 934 youths (511 urban, 423 rural) to the NYI resulted in a four‐factor solution. This solution was stable across responses from youths in Grades 7, 9 and 11, and for urban and rural youths. Cronbach alphas ranged from 0.64 to 0.94. Construct, convergent and discriminant validity of the NYI subscales are demonstrated. Using the NYI we will be able to assess youths' experiences within their neighbourhoods, which may contribute to a more ecological understanding of healthy developmental outcomes beyond family, peer and school environments. Copyright © 1999 John Wiley & Sons, Ltd.     

Judicial decision making: order of evidence presentation and availability of background information

An experiment was conducted to investigate both the effect of the order of presentation of defence and prosecution evidence and the prior availability of background information on assessment of guilt. Subjects were required to judge the defendant's probability of guilt either after each witness statement (step-by-step) or after having read all witness statements (end-of-sequence). In the step-by-step mode, an order effect was observed with later evidence exerting a greater impact on the subjects' judgment. This recency effect probably occurred because subjects used an anchoring-and-adjustment process: each new piece of evidence was averaged with an anchor judgment reflecting the overall assessment of previous items. In the end-of-sequence mode, on the other hand, the order effect depended on the background condition: if background information was provided a recency effect occurred, but if no background information was available a primacy effect was evident. This result might be explained by assuming that subjects tried to integrate witness information into a coherent cognitive pattern. As the judgment is memory-based in the end-of-sequence condition, recent information will be more available than earlier items. However, when no background information was presented, the first evidence items had to be processed at a more semantic, deeper level, resulting in a primacy effect that apparently outweighed the recency effect. © 1998 John Wiley & Sons, Ltd.