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.     

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.     

“Coming Out” to Parents in a Christian Context: A Consensual Qualitative Analysis of LGB Student Experiences

Disclosures of same-sex attraction are some of the most difficult experiences for lesbian, gay, and bisexual (LGB) individuals. For LGB individuals of faith, disclosure to parents is often complicated by the intersection of religion/spirituality and sexuality. This study presents a grounded theory about a particular subgroup to address gaps in the literature concerning how LGB students on Christian college campuses describe and experience their parental disclosures. Consensual qualitative research analysis (Hill, Knox, Thompson, Williams, & Hess, 2005; Hill, Thompson, & Williams, 1997) revealed themes related to predisclosure influencing factors, the disclosure event experience, and longer term impacts of the disclosure. Implications for parents, counselors, and college faculty/staff are provided.     

The Experience of Leader-Led Peer Supervision: Genetic Counselors' Perspectives

As we proceed through our professional lives, it is essential that we challengeourselves in order to continue to develop our genetic counseling skills. Conferences, workshops,post-graduate courses, journal clubs, and involvement in professional organizations havebecome the traditional methods of continuing education for post-graduate geneticcounselors. While these forums address the need to stay updated on scientific orinformation-based topics, there is little available to counselors to promote growth incounseling skills. A group of Boston-based genetic counselors describe how their leader-ledsupervision group has established a setting to meet the needs of its members both forsupport and continued counseling training. We outline here the evolution of this group andhow it has become a valued part of our professional lives. We feel that the model of leader-ledpeer supervision holds great value in helping genetic counselors continue to enhancetheir interpersonal skills in a supportive, safe, and challenging environment. It is our hopethat others will elect to form similar groups in their own communities, thereby creating newopportunities for growth within the genetic counseling profession.