Quality of Life and Autonomy in Emerging Adults with Early-Onset Neuromuscular Disorders

Emerging adulthood is an important period in the development of one's identity and autonomy. The ways in which identity and autonomy are viewed by emerging adults and how they impact quality of life (QoL) in individuals with early-onset neuromuscular conditions is not yet known. This study focused on understanding and exploring relationships between self-perceptions of emerging adulthood, autonomy, and QoL. Five previously validated measures were incorporated into an online survey and distributed to young adults with early-onset neuromuscular conditions and unaffected controls. Topics explored included individuals' views regarding their overall QoL, disease-specific QoL, components of emerging adulthood, and autonomy. We found that a sense of higher disease impact was associated with a lower Overall General QoL. Additionally, perceptions of key autonomy factors "negativity" and "instability" were uniquely associated with Overall General QoL in the case group as compared to controls, whereas "attitudinal autonomy" (attaining the ability to plan and follow through with goals) was important to this age group regardless of health status. The specific factors of emerging adulthood and autonomy that were significantly correlated with Overall General QoL can be used for developing targeted counseling and interventions to improve QoL for individuals and their families.     

Goal Orientation and Feedback Congruence: Effects on Discretionary Effort and Achievement

This study examines the differential effects of outcome feedback for achievement goal orientations' relationship with effort and achievement. In support of our predictions, learning goal orientation had a positive relationship with task achievement in the absence of outcome feedback and a negative relationship in its presence, while performance goal orientation maintained a positive relationship with achievement regardless of whether outcome feedback was provided. We attribute this to a decrease in task interest when initial task purpose, as determined by personal goal orientation, is incongruent with the subsequent task cues provided by outcome feedback. Predictions regarding task effort and combined goal orientation effects were not supported. Implications for theory and practice are discussed.     

Compensatory nonconformity: Self-uncertainty and low implicit self-esteem increase adoption and expression of minority opinions

The present studies tested whether people, particularly those who are most vulnerable to self-threats as indicated by low implicit self-esteem, adopt and express minority opinions to compensate for self-uncertainty. In Studies 1 through 3, low implicit self-esteem participants who were made to feel uncertain about themselves as individuals (versus uncertain about a self-irrelevant issue in Study 1, certain about themselves in Study 2, or uncertain about their group memberships in Study 3) expressed more disagreement with others' opinions. Additionally, Study 3 demonstrated that this effect is specific to minority opinions and does not emerge on majority opinions. In Study 4, the relation between self-uncertainty and disagreement with others' opinions was strongest among participants with both low implicit and high explicit self-esteem, who respond to self-threats in particularly defensive ways.     

Up-regulating positive emotions in everyday life: Strategies, individual differences, and associations with positive emotion and well-being

This research aimed to identify strategies people use to up-regulate positive emotions, and examine associations with personality, emotion regulation, and trait and state positive experience. In Study 1, participants reported use of 75 regulation strategies and trait emotional experience. Principal component analysis revealed three strategy domains: engagement (socializing, savoring), betterment (goal pursuit, personal growth), and indulgence (substance use, fantasy). In Study 2, participants reported state-level regulation and emotional experience. Engagement correlated with greater state and trait positive emotion, and overall greater well-being. Betterment correlated with less state, but greater trait, positive emotion. Indulgence correlated with greater state, but less trait positive emotion and overall lower well-being. This research suggests trade-offs between short-term and long-term emotional consequences of different strategies.     

Gender Dynamics in Mexican American Families: Connecting Mothers’, Fathers’, and Youths’ Experiences

Study goals were to examine the conditions under which congruent and incongruent patterns of parents’ division of household labor and gender role attitudes emerged, and the implications of these patterns for youth gender development. Questionnaire and phone diary data were collected from mothers, fathers, and youths from 236 Mexican American families living in the southwestern US. Preliminary cluster analysis identified three patterns: Traditional divisions of labor and traditional attitudes, egalitarian divisions of labor and egalitarian attitudes, and an incongruent pattern, with a traditional division of labor but egalitarian attitudes. MANOVAs, and follow-up, mixed- and between-group ANOVAs, revealed that these groups of families differed in parents’ time constraints, socioeconomic resources, and cultural orientations. Mothers in the congruent egalitarian group worked more hours and earned higher incomes as compared to mothers in the congruent traditional and incongruent groups, and the emergence of the incongruent group was grounded in within-family, interparental differences in work hours and incomes. Parents’ patterns of gendered practices and beliefs were linked to their youths’ housework participation, time with mothers versus fathers, and gender role attitudes. Youths in the congruent traditional group reported more traditional gender role attitudes than did youths in the congruent egalitarian and incongruent groups, and gender atypical housework participation and time with parents were only observed in the congruent egalitarian group. Findings demonstrate the utility of a within-family design to understand complex gendered phenomena, and highlight the multidimensional nature of gender and the importance of contextualizing the study of ethnic minorities.     

X-rated material and perpetration of sexually aggressive behavior among children and adolescents: is there a link?

Longitudinal linkages between intentional exposure to x-rated material and sexually aggressive behavior were examined among youth 10-15 year olds surveyed nationally in the United States. At Wave 1 in 2006, participants (n = 1,588) were queried about these exposures and outcomes in the preceding 12 months. Wave 2 data (n = 1,206) were collected approximately 12 months after Wave 1 and Wave 3 data (n = 1,159) were collected approximately 24 months after Wave 1. Thus, data for this project represent a 36-month time frame. A marginal model with generalized estimating equations was used to represent the population-average odds of sexually aggressive behavior over the 36 months as a function of exposure to x-rated material over the same time and to account for clustering in the data within person over time. An average of 5% of youth reported perpetrating sexually aggressive behavior and 23% of youth reported intentional exposure to x-rated material. After adjusting for other potentially influential proximal (i.e., sexual aggression victimization) and distal characteristics (e.g., substance use), we found that intentional exposure to violent x-rated material over time predicted an almost 6-fold increase in the odds of self-reported sexually aggressive behavior (aOR: 5.8, 95% CI: 3.2, 10.5), whereas exposure to nonviolent x-rated material was not statistically significantly related (aOR: 1.7, 95% CI: 0.94, 2.9). Associations were similar for boys and girls (boys nonviolent x-rated material aOR = 2.0, 95% CI: 0.8, 4.7; violent x-rated material aOR = 6.5, 95% CI: 2.7, 15.3; girls nonviolent x-rated material aOR = 1.2, 95% CI: 0.5, 3.2; violet x-rated material aOR = 6.1, 95% CI: 2.5, 14.8).     

A Picture-Based Activity Schedule Intervention to Teach Adults with Mild Intellectual Disability to Use an iPad During a Leisure Activity

Individuals with developmental disabilities have limited opportunities to participate in leisure activities, frequently due to lack of skills. The purpose of the current study was to teach three adults diagnosed with mild intellectual disability to use an iPad in the context of playing the video game Angry Birds. We used an adapted multiple baseline across participants research design to teach the task, which included opening the cover of the iPad, unlocking the device, opening Angry Birds, playing the game, and putting the iPad away. Instruction took place during breaks in a private room at a sheltered workshop. During intervention, participants had access to an activity schedule to aid in completion of the task. In some cases, extra prompts were provided to increase attention to the activity schedule. All three participants showed improvement in the target skill with intervention and gains were sustained during the maintenance phase.     

What's mom got to do with it? Contributions of maternal executive function and caregiving to the development of executive function across early childhood

Executive functions (EFs; e.g. working memory, inhibitory control) are mediated by the prefrontal cortex and associated with optimal cognitive and socio‐emotional development. This study provides the first concurrent analysis of the relative contributions of maternal EF and caregiving to child EF. A group of children and their mothers (n = 62) completed age‐appropriate interaction (10, 24, 36 months) and EF tasks (child: 24, 36, and 48 months). Regression analyses revealed that by 36 months of age, maternal EF and negative caregiving behaviors accounted for unique variance in child EF, above and beyond maternal education and child verbal ability. These findings were confirmed when using an early child EF composite‐our most reliable measure of EF – and a similar pattern was found when controlling for stability in child EF. Furthermore, there was evidence that maternal EF had significant indirect effects on changes in child EF through maternal caregiving. At 24 months, EF was associated with maternal EF, but not negative caregiving behaviors. Taken together, these findings suggest that links between negative caregiving and child EF are increasingly manifested during early childhood. Although maternal EF and negative caregiving are related, they provide unique information about the development of child EF. A video abstract of this article can be viewed at http://www.youtube.com/watch?v=NPKXFbbrkps     

In the absence of conflicting testimony young children trust inaccurate informants

The present research investigated the nature of the inferences and decisions young children make about informants with a prior history of inaccuracies. Across three experiments, 3‐ and 4‐year‐olds (total N = 182) reacted to previously inaccurate informants who offered testimony in an object‐labeling task. Of central interest was children's willingness to accept information provided by an inaccurate informant in different contexts of being alone, paired with an accurate informant, or paired with a novel (neutral) informant. Experiments 1 and 2 showed that when a previously inaccurate informant was alone and provided testimony that was not in conflict with the testimony of another informant, children systematically accepted the testimony of that informant. Experiment 3 showed that children accepted testimony from a neutral informant over an inaccurate informant when both provided information, but accepted testimony from an inaccurate informant rather than seeking information from an available neutral informant who did not automatically offer information. These results suggest that even though young children use prior history of accuracy to determine the relative reliability of informants, they are quite willing to trust the testimony of a single informant alone, regardless of whether that informant had previously been reliable.     

Learning from parents' stories about what works in early intervention

Using a multiple case study approach, this ethnography examined the experiences of parents of children deemed at risk for developmental delays or disabilities who had received early intervention (EI) services (birth to age 3 years) in a large urban location in Western Canada. Participants (11 adult parents and 7 children) were drawn from six families. Methods of data collection included focus groups (FG), face‐to‐face interviews and file reviews. Member check and expert reviews were conducted throughout data collection and data analyses as part of the validation process in this ethnography. Qualitative content analyses followed by thematic analyses highlighted the implementation of family‐centred practices (FCP) as a main theme. Parents identified how EI professionals using FCP embraced collaborative practices. FCP resulted in parents leading the EI process for their children. More specifically, EI professionals shared strategies and information to support parents in gaining a deeper understanding of their children's individual developmental characteristics. Parents expressed how empowering this level of understanding was for them as they learned to articulate what were their children's needs for developmental, health and educational services. Recommendations for future research include inquiring about parents' experiences for families of diverse constellations and/or residing in smaller urban or rural communities.