An Evidence-Based,Community-Engaged Approach to Develop an Interactive Deliberation Tool for Pediatric Neuromuscular Trials

Duchenne/Becker muscular dystrophy (DBMD) and spinal muscular atrophy (SMA) are rare neuromuscular disorders that present challenges to therapeutic and clinical trial decision making. We developed an interactive, evidence-based online tool designed to encourage thoughtful deliberation of the pros and cons of trial participation and to inform meaningful discussions with healthcare providers. Prior research demonstrates the importance of tool availability at the time each family is considering trial participation, which may be prior to the informed consent process. The tool is intended to be easily modified to other pediatric disease communities. Tool development was informed by prior qualitative research, literature reviews, and stakeholder input. Specific items were derived based on an online exploratory questionnaire of parents whose children participated in a trial for DBMD or SMA to understand motivations for participation. Parent participants in the exploratory survey reported strong impact of altruistic and individual benefit motivations and placed much greater emphasis on anticipated trial benefits than on harms when making participation decisions. We used this data to develop the evidence-based deliberation tool using a community-engaged approach. We initially targeted the tool for DBMD while using SMA survey data to evaluate ease of transition to that population. We conducted two iterative sets of activities to inform development and refinement of the tool: (1) community engagement of key stakeholders and (2) user experience testing. These activities suggest that the tool may increase deliberation and the weighing of benefits and harms. Ongoing evaluation will determine the acceptability and efficacy of this online intervention.     

Creation and Implementation of an Environmental Scan to Assess Cancer Genetics Services at Three Oncology Care Settings

An environmental scan (ES) is an efficient mixed-methods approach to collect and interpret relevant data for strategic planning and project design. To date, the ES has not been used nor evaluated in the clinical cancer genetics setting. We created and implemented an ES to inform the design of a quality improvement (QI) project to increase the rates of adherence to national guidelines for cancer genetic counseling and genetic testing at three unique oncology care settings (OCS). The ES collected qualitative and quantitative data from reviews of internal processes, past QI efforts, the literature, and each OCS. The ES used a data collection form and semi-structured interviews to aid in data collection. The ES was completed within 6 months, and sufficient data were captured to identify opportunities and threats to the QI project’s success, as well as potential barriers to, and facilitators of guideline-based cancer genetics services at each OCS. Previously unreported barriers were identified, including inefficient genetic counseling appointment scheduling processes and the inability to track referrals, genetics appointments, and genetic test results within electronic medical record systems. The ES was a valuable process for QI project planning at three OCS and may be used to evaluate genetics services in other settings.     

Functional Communication Training and Demand Fading Using Concurrent Schedules of Reinforcement

Demand fading, a schedule thinning procedure for escape-maintained behaviors, typically includes an escape extinction component. The purpose of this study was to examine the effectiveness of demand fading with alternative reinforcement utilizing concurrent reinforcement schedules without extinction. During demand fading, aggression and requests emitted prior to meeting the task completion criterion were reinforced with short, low-quality breaks, but requests emitted following the task completion criterion were reinforced with long, high-quality breaks. Results suggest that concurrent schedules of reinforcement may be an effective alternative to extinction as a component of demand fading.     

Repressive Adaptive Style Across Ethnicities

There may be significant differences in coping styles across ethnicities. Previous research has suggested disparities in the number of individuals who utilize repressive adaptive coping style among cultural groups. Repressive adaptive style is a coping mechanism in which individuals report low distress levels while they actually experience high levels of stress. Developing an enhanced understanding of the prevalence of the utilization of repressive adaptive style in different ethnic groups is important for informing intervention techniques to better account for the cultural influences on mental health. The present study investigated the utilization of repressive adaptive style across American Indian (n?=?31), African American (n?=?53), and European American (n?=?48) children in the Midwest. The age range of the children was 10 to 13 years and 50.8% were male. Dependent measures included the Children’s Social Desirability Scale and the State-Trait Anxiety Inventory for Children. Results indicated significant differences in reports of anxiety between ethnic groups. Additionally, it was discovered that African American and European American children utilized repressive adaptive style more than American Indian children, albeit not significantly. Because of the high rates of suicide and emotional distress believed to be experienced by American Indian children this result is interesting. Continued research investigating protective factors, such as high levels of cultural identity and connectedness, is warranted.     

Casino Gambling and the Family: Exploring the Connections and Identifying Consequences

Although sanctioned by state governments and widely popular across the United States, gambling remains a controversial activity. For example, casino gambling may be legal and popular, but many believe squandering money is harmful and deviant. People from all backgrounds visit casinos. However, older adults comprise a major portion of the gambling clientele. Along with this have come reports of a wide variety of negative outcomes. Yet, few studies have investigated the relationship between gambling and the family. We use a qualitative in-depth interview grounded theory approach with 34 adults aged 62–88 to investigate the relationship between gambling and family consequences. We explore the impact of gambling on the family with the active aging concept as well as the codependency and sociocultural models of addiction. They offer new ways to understand mild to serious deviance among older adults.     

Continuous flash suppression and monocular pattern masking impact subjective awareness similarly

Peters and Lau (eLife, 4, e09651, 2015) found that when criterion bias is controlled for, there is no evidence for unconscious visual perception in normal observers, in the sense that they cannot directly discriminate a target above chance without knowing it. One criticism of that study is that the visual suppression method used, forward and backward masking (FBM), may be too blunt in the way it interferes with visual processing to allow for unconscious forced-choice discrimination. To investigate this question, we compared FBM directly to continuous flash suppression (CFS) in a two-interval forced-choice task. Although CFS is popular, and may be thought of as a more powerful visual suppression technique, we found no difference in the degree of perceptual impairment between the two suppression types. To the extent that CFS impairs perception, both objective discrimination and subjective awareness are impaired to similar degrees under FBM. This pattern was consistently observed across three experiments in which various experimental parameters were varied. These findings provide evidence for an ongoing debate about unconscious perception: normal observers cannot perform forced-choice discrimination tasks unconsciously.     

The Impact of Chronic Health Conditions as an Underlying Challenge on Couple’s Wellbeing

Chronic health conditions affect over 100 million Americans (Cano and Leonard in J Clin Psychol 62(11):1409–1418, 2006). Many clinicians are not integrating chronic physical health symptoms into psychotherapy. There is a complexity of issues that arise within the context of chronic health conditions. Making more need for couple and family therapists, whose primary focus is on a systemic family perspective, to understand how chronic health conditions are impacting family systems when they present for therapy (Canavarro and Dattilio in Contemp Fam Ther 33:87–90, 2011; Poleshuck et al. in Prof Psychol 41(4):312–318, 2010). The correlation of chronic health conditions on marriages and relationships has received limited attention in clinical research. This secondary data analysis examines the differences in overall well-being and psychological distress of individuals and couples seeking therapy who report a presence of chronic health conditions. Original research on the relationship between chronic health conditions and well-being, as measured by comparison of means, will be presented. Few studies investigate how chronic health conditions, when not the primary reason for seeking therapy, influence wellbeing and distress upon entering therapy. This study included 2742 participants from a clinical sample of individuals and couple seeking therapy in a family therapy clinic at a university training clinic. Independent t-tests, as well as ANOVA, were run to compare well-being and psychological distress of individuals and couples in the sample. Results showed significant differences in both overall wellbeing and psychological distress for both individuals who reported chronic illness for themselves, or their partners, than those that reported no chronic illness. There were also significant differences between groups on both well-being and psychological distress [F (2, 2706)?=?47.55, p?=?.00, F (2, 2697)?=?54.59, p?=?.00]. This results showed significant differences in well-being when no member of the couple has chronic health conditions, one member, or both members, with both members decreasing wellbeing significantly. This study demonstrates that chronic health conditions impact both the individual diagnosed, their partners, and is especially impactful if both members of a couple are diagnosed with chronic health conditions. Study limitations and clinical implications are also discussed.     

Mental health consequences of weight cycling in the first-year post-treatment for breast cancer

Objectives: Weight cycling is linked with advanced breast cancer diagnosis, increased risk of cancer reoccurrence and cancer-related mortality. While women treated for breast cancer report challenges with navigating their post-treatment body shape and weight, the effects of weight cycling on body image and mental health have not been elucidated. This study examined associations between weight changes and weight cycling on psychological health (i.e. weight-related guilt, shame and depressive symptoms) among women in the first-year post-treatment.

Design and Outcome Measures: Self-reported assessments of pre-cancer weight cycling, post-treatment weight-related guilt, shame and depressive symptoms, and objective assessments of weight were assessed in a longitudinal sample of 173 women treated for breast cancer (M_age = 55.01 ± 10.96 years).

Results: Based on findings from multilevel models, women experienced the most weight-related shame when their weight was heavier than their personal average. Additionally, heavier weight was associated with worse psychological health, particularly for women with a history of stable (vs. cycling) weight pre-cancer.

Conclusions: Weight cycling pre-cancer and post-treatment weight change have important implications for psychological well-being. Due to the potential psychological consequences associated with a history of weight cycling, targeted strategies are needed to improve overall health outcomes for women’s survivorship after breast cancer.     

It is written all over your face: Socially rejected people display microexpressions that are detectable after training in the Micro Expression Training Tool (METT)

Social rejection is a powerful negative emotional experience, yet rejected people often appear stoic and unmoved. That is, their macroexpressions of emotion are not accurate reflections of their emotional states. Yet, there is reason to believe that rejected people exhibit involuntary microexpressions of negative emotion. We contrasted people's macroexpressions of emotion with their microexpressions subsequent to an acceptance or rejection experience. Observers coded microexpressions after being trained with the Micro Expression Training Tool. Rejected participants expressed more sad and angry microexpressions than did accepted participants. This research demonstrates that socially rejected people display negative microexpressions that are detectable by observers trained in the Micro Expression Training Tool.