The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities

BACKGROUND: Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD. METHOD: Seventy‐nine adult siblings from 19 to 72 years of age completed an online survey with open‐ended questions about the roles they play in their relationships with their brother or sister. RESULTS: Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator. CONCLUSION: Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles.Accepted manuscrip

Patterns of adult sibling role involvement with brothers and sisters with intellectual and developmental disabilities

Adult siblings of individuals with intellectual and developmental disabilities (IDD) are increasingly involved in family care, yet, adult siblings consistently report needing more information and support to engage in these roles. Knowing more about which roles siblings are likely to assume may help address this need. Thus, we further examined the most common roles assumed by adult siblings (N = 171), the demographic variables related to an increased likelihood of assuming specific roles, and the potential clusters in patterns of role assumption. We transformed qualitative data from an online survey with four open-ended questions about sibling relationships and roles into quantitative presence data for role-related codes in order to examine relationships between assumed roles and demographic variables. The most common roles assumed by adult siblings were friend, advocate, caregiver, and sibling. Key demographic variables related to role assumption included disability severity, emotional closeness, and age of the brother or sister with IDD. Cluster analyses indicated five potential categories of adult sibling role involvement: Companion, Least Involved, Highly Involved, Needs Focused, and Professional. Implications and future areas of research are shared.Accepted manuscrip

Understanding decision making among individuals With Intellectual and Developmental Disabilities (IDD) and their siblings

Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given these roles and the importance of supported decision-making, it is crucial to understand how individuals with IDD and their siblings make decisions. Using dyadic interviews, we examined the perspectives of nine sibling dyads (N = 18) about decision-making in relation to self-determination, independent living, and employment. The ages of participants ranged from 19 to 57. Data were analyzed using constant comparative analysis to identify themes. Decision-making was characterized by: parents and siblings primarily identifying courses of action; the probability of respective consequences based on the person-environment fit; and the role of the sibling in making the final decision. Characteristics related to the individual with IDD, the family, the sibling, and the environment impacted decision-making. Individuals with IDD were more likely to make their own decisions about leisure activities, however, siblings were more likely to make formal decisions for their brothers and sisters.Accepted manuscrip

Serious Game Evaluation as a Meta-game

Purpose – This paper aims to briefly outline the seamless evaluation approach and its application during an evaluation of ORIENT, a serious game aimed at young adults. Design/methodology/approach – In this paper, the authors detail a unobtrusive, embedded evaluation approach that occurs within the game context, adding value and entertainment to the player experience whilst accumulating useful data for the development team. Findings – The key result from this study was that during the “seamless evaluation” approach, users were unaware that they had been participating in an evaluation, with instruments enhancing rather than detracting from the in-role game experience. Practical implications – This approach, seamless evaluation, was devised in response to player expectations, perspectives and requirements, recognising that in the evaluation of games the whole process of interaction including its evaluation must be enjoyable and fun for the user. Originality/value – Through using seamless evaluation, the authors created an evaluation completely embedded within the “magic circle” of an in-game experience that added value to the user experience whilst also yielding relevant results for the development team

A standardised nutritional drink as a test meal for the 13 C mixed triglyceride breath test for pancreatic exocrine insufficiency:A randomised, two-arm crossover comparative study

BACKGROUND: The 13 C mixed triglyceride breath test (13 C MTGT) is a diagnostic test for pancreatic exocrine insufficiency (PEI). It is poorly standardised with much heterogeneity of the test meal, the commonest being toast and butter. A standardised oral nutritional supplement that could be easily transported, stored and made up would be valuable for making this test accessible outside of specialist centres.METHODS: A prospective, randomised, two-arm crossover study of different test meals was carried out in 14 healthy controls. The 13 C MTGT was performed in identical conditions on two separate days. Two test meals were given in random order, either standard (toast and butter) or novel (oral nutritional supplement), with 250 mg of 13 C-labelled mixed triglyceride incorporated. Breath samples were taken postprandially to calculate cumulative percentage dose recovery (cPDR) of 13 C at 6 h.RESULTS: All 14 participants completed both arms of the study with no protocol deviations. The mean cPDR was 39.39% (standard deviation [SD] 5.19) for the standard test meal and 39.93% (SD 5.20) for the novel test meal. A one-way repeated measures analysis of variance (ANOVA) found no significant difference in cPDR between the two meals, F(1, 13) = 0.18, p = 0.68 (minimum detectable difference of 0.81 at 80% power).CONCLUSION: This study demonstrates that a standardised oral nutritional supplement can be used without compromising 13 C recovery. Using this test meal provides a standardised dietary stimulus to the pancreas, avoiding possible variation in quantity of dietary components with other test meals. Further, the ease of use of this method would help establish the 13 C MTGT test more widely.</p

Expansion of Foxp3+ T-cell populations by Candida albicans enhances both Th17-cell responses and fungal dissemination after intravenous challenge

Research Funding Wellcome Trust, UK. Grant Numbers: 086827, 080088 NIH. Grant Number: DE022550Peer reviewedPublisher PD

A review of the analytical techniques for the detection of anabolic–androgenic steroids within biological matrices

Anabolic–androgenic steroids (AASs) and other image and performance enhancing drugs (IPEDs) are controlled by governments and sport institutions such as the World Anti-doping Agency (WADA). Although elite athletes and professional bodybuilders are the most visible AAS abusers, the introduction of the internet has increased the accessibility of AASs, with use being observed among recreational gym goers at increasing prevalence. Despite reported increase in use, routine analysis for these substances is uncommon, with many forensic laboratories opting to outsource AAS analysis. This review collates information regarding the extraction and analysis of AASs from various biological matrices with the considered purpose of providing a reference for the development of AAS methods to allow for routine detection by forensic laboratories

The physical and psychological health benefits of positive emotional writing:Investigating the moderating role of Type D (distressed) personality

Objectives Type D personality is associated with psychological and physical ill‐health. However, there has been limited investigation of the role of Type D personality in interventions designed to enhance well‐being. This study investigated associations between Type D personality and the efficacy of positive emotional writing for reducing stress, anxiety, and physical symptoms. Design A between‐subjects longitudinal design was employed. Method Participants (N = 71, Mage = 28.2, SDage = 12.4) completed self‐report measures of Type D personality, physical symptoms, perceived stress, and trait anxiety, before completing either (1) positive emotional writing or (2) a non‐emotive control writing task, for 20 min per day over three consecutive days. State anxiety was measured immediately before and after each writing session, and self‐report questionnaires were again administered 4 weeks post‐writing. Results Participants in the positive emotional writing condition showed significantly greater reductions in (1) state anxiety and (2) both trait anxiety and perceived stress over the 4‐week follow‐up period, compared to the control group. While these effects were not moderated by Type D personality, a decrease in trait anxiety was particularly evident in participants who reported both high levels of social inhibition and low negative affectivity. Linguistic analysis of the writing diaries showed that Type D personality was positively associated with swear word use, but not any other linguistic categories. Conclusion These findings support the efficacy of positive emotional writing for alleviating stress and anxiety, but not perceived physical symptoms. Swearing may be a coping strategy employed by high Type D individuals

Cdc42 and Par6–PKCζ regulate the spatially localized association of Dlg1 and APC to control cell polarization

Cell polarization is essential in a wide range of biological processes such as morphogenesis, asymmetric division, and directed migration. In this study, we show that two tumor suppressor proteins, adenomatous polyposis coli (APC) and Dlg1-SAP97, are required for the polarization of migrating astrocytes. Activation of the Par6–PKCζ complex by Cdc42 at the leading edge of migrating cells promotes both the localized association of APC with microtubule plus ends and the assembly of Dlg-containing puncta in the plasma membrane. Biochemical analysis and total internal reflection fluorescence microscopy reveal that the subsequent physical interaction between APC and Dlg1 is required for polarization of the microtubule cytoskeleton