Parental resilience and the quality of life of children with developmental disabilities in Indonesia

Cultures could influence parents in the way they perceive adverse situations and in how external factors influence resilience, which in turn, may differentially affect the quality of life of a child. The present study aimed to examine the associations between different dimensions of parental resilience and the quality of life of children in Indonesia. The samples consisted of 497 families. This study used the Parenting Resilience Elements and the Quality of Life Questionnaire. Parental resilience consists of three dimensions, knowledge of child’s characteristics, positive perception of parenting, and perceived social support. Knowledge of child’s characteristics, one of the parental resilience dimensions, significantly related to the Quality of Life dimensions of communication and influence, and development. Positive perceptions of parenting related to socio-emotional well-being. Perceived social support related to material well-being, activity, and socio-emotional well-being. We found that the parental resilience related to Quality of Life of children with developmental disabilities. Some findings could be unique for a collectivist culture and highlight the complexities of the association between different factors of parent resilience and Quality of Life of children with developmental disabilities in Indonesia

Game-based meditation therapy to improve posttraumatic stress and neurobiological stress systems in traumatized adolescents:Protocol for a randomized controlled trial

Background: Many adolescents in residential care have been exposed to prolonged traumatic experiences such as violence, neglect, or abuse. Consequently, they suffer from posttraumatic stress. This not only negatively affects psychological and behavioral outcomes (eg, increased anxiety, depression, and aggression) but also has adverse effects on physiological outcomes, in particular on their neurobiological stress systems. Although current evidence-based treatment options are effective, they have their limitations. An alternative to traditional trauma treatment is meditation-based treatment that focuses on stress regulation and relaxation. Muse is a game-based meditation intervention that makes use of adolescents’ intrinsic motivation. The neurofeedback element reinforces relaxation abilities. Objective: This paper describes the protocol for a randomized controlled trial in which the goal is to examine the effectiveness of Muse (InteraXon Inc) in reducing posttraumatic stress and normalizing neurobiological stress systems in a sample of traumatized adolescents in residential care. Methods: This will be a multicenter, multi-informant, and multimethod randomized controlled trial. Participants will be adolescents (N=80), aged 10 to 18 years, with clinical levels of posttraumatic symptoms, who are randomized to receive either the Muse therapy sessions and treatment as usual (intervention) or treatment as usual alone (control). Data will be collected at 3 measurement instances: pretest (T1), posttest (T2), and at 2-month follow-up. Primary outcomes will be posttraumatic symptoms (self-report and mentor report) and stress (self-report) at posttest. Secondary outcomes will be neurobiological stress parameters under both resting and acute stress conditions, and anxiety, depression, and aggression at posttest. Secondary outcomes also include all measures at 2-month follow-up: posttraumatic symptoms, stress, anxiety, depression aggression, and neurobiological resting parameters. Results: The medical-ethical committee Arnhem-Nijmegen (NL58674.091.16) approved the trial on November 15, 2017. The study was registered on December 2, 2017. Participant enrollment started in January 2018, and the results of the study are expected to be published in spring or summer 2021. Conclusions: Study results will demonstrate whether game-based meditation therapy improves posttraumatic stress and neurobiological stress systems, and whether it is more effective than treatment as usual alone for traumatized adolescents

Validity of the Empatica E4 wristband to measure heart rate variability (HRV) parameters:A comparison to electrocardiography (ECG)

Wearable monitoring devices are an innovative way to measure heart rate (HR) and heart rate variability (HRV), however, there is still debate about the validity of these wearables. This study aimed to validate the accuracy and predictive value of the Empatica E4 wristband against the VU University Ambulatory Monitoring System (VU-AMS) in a clinical population of traumatized adolescents in residential care. A sample of 345 recordings of both the Empatica E4 wristband and the VU-AMS was derived from a feasibility study that included fifteen participants. They wore both devices during two experimental testing and twelve intervention sessions. We used correlations, cross-correlations, Mann-Whitney tests, difference factors, Bland-Altman plots, and Limits of Agreement to evaluate differences in outcomes between devices. Significant correlations were found between Empatica E4 and VU-AMS recordings for HR, SDNN, RMSSD, and HF recordings. There was a significant difference between the devices for all parameters but HR, although effect sizes were small for SDNN, LF, and HF. For all parameters but RMSSD, testing outcomes of the two devices led to the same conclusions regarding significance. The Empatica E4 wristband provides a new opportunity to measure HRV in an unobtrusive way. Results of this study indicate the potential of the Empatica E4 as a practical and valid tool for research on HR and HRV under non-movement conditions. While more research needs to be conducted, this study could be considered as a first step to support the use of HRV recordings provided by wearables

Global identification helps increase identity integration among Turkish gay men

Globalisation provides novel contexts for individuals to express and transform their identities in ways that may not be available in their local cultures. For gay men living in cultures where traditional masculinity norms prescribe heterosexuality and the rejection of homosexuality, gay-male identity is inherently threatened. However, adopting an identity as a ‘global citizen’ may increase the compatibility between gay and male identities, and hence augment well-being. We conducted an experiment with a community sample of 220 gay men in Turkey, manipulating pro- and anti-globalisation world views. Priming with pro-globalisation world views increased people’s identification as global citizens, and thus indirectly led to higher gay-male identity integration. Identity integration, in turn, predicted higher subjective well-being. This study brings the first experimental evidence on the link between global identification and gay-male identity integration. Beyond its local focus on the cultural context of Turkey, it highlights the importance of an intersectional approach to studying social identities by showing how the compatibility of two social identities can be increased by adopting a third social identity

Elements of care that matter:Perspectives of families with multiple problems

The severe and often persistent problems of families with multiple problems (FMP) call for better understanding of how interventions can improve outcomes in these families. Perspectives of FMP on the crucial elements of interventions may strongly support improvement by providing cues on how to realize positive change. We therefore explored the views of parents and children in FMP regarding helpful and less helpful elements of various interventions. We interviewed 24 parents and 4 children about their perspectives, using a semi-structured interview guide comprising themes that were chosen by the target group. Participants reported 11 elements that contribute to the effectiveness of care, categorized under three main themes: the characteristics of the practitioner, the content of interventions, and the structure of interventions. The perspectives of FMP show the following activities to be promising: routine reflection on the non-judgmental and positive approach of practitioners, more direct focus on children, focus on the underlying cause of behavior, activation of families’ social network, the school and other professionals around the family, and creation of more possibilities for long-term and flexible support. Perspectives of FMP on the content and provision of care should be better embedded in interventions. This may help to tailor interventions to their wishes and needs, which in turn can contribute to more positive outcomes of care

Brief report:Follow-up outcomes of multisystemic therapy for adolescents with an intellectual disability and the relation with parental intellectual disability

Research on follow‐up outcomes of systemic interventions for family members with an intellectual disability is scarce. In this study, short‐term and long‐term follow‐up outcomes of multisystemic therapy for adolescents with antisocial or delinquent behaviour and an intellectual disability (MST‐ID) are reported. In addition, the role of parental intellectual disability was examined. Outcomes of 55 families who had received MST‐ID were assessed at the end of treatment and at 6‐month, 12‐month and 18‐month follow‐up. Parental intellectual disability was used as a predictor of treatment outcomes. Missing data were handled using multiple imputation. Rule‐breaking behaviour of adolescents declined during treatment and stabilized until 18 months post‐treatment. The presence or absence of parental intellectual disability did not predict treatment outcomes. This study was the first to report long‐term outcomes of MST‐ID. The intervention achieved similar results in families with and without parents with an intellectual disability

Defective complex I assembly due to C20orf7 mutations as a new cause of Leigh syndrome

Background: Leigh syndrome is an early onset, progressive, neurodegenerative disorder with developmental and motor skills regression. Characteristic magnetic resonance imaging abnormalities consist of focal bilateral lesions in the basal ganglia and/or the brainstem. The main cause is a deficiency in oxidative phosphorylation due to mutations in an mtDNA or nuclear oxidative phosphorylation gene. Methods and results: A consanguineous Moroccan family with Leigh syndrome comprise 11 children, three of which are affected. Marker analysis revealed a homozygous region of 11.5 Mb on chromosome 20, containing 111 genes. Eight possible mitochondrial candidate genes were sequenced. Patients were homozygous for an unclassified variant (p.P193L) in the cardiolipin synthase gene (CRLS1). As this variant was present in 20% of a Moroccan control population and enzyme activity was only reduced to 50%, this could not explain the rare clinical phenotype in our family. Patients were also homozygous for an amino acid substitution (p.L159F) in C20orf7, a new complex I assembly factor. Parents were heterozygous and unaffected sibs heterozygous or homozygous wild type. The mutation affects the predicted S-adenosylmethionine (SAM) dependent methyltransferase domain of C20orf7, possibly involved in methylation of NDUFB3 during the assembly process. Blue native gel electrophoresis showed an altered complex I assembly with only 30-40% of mature complex I present in patients and 70-90% in carriers. Conclusions: A new cause of Leigh syndrome can be a defect in early complex I assembly due to C20orf7 mutations

Myocardial perfusion scintigraphy before and after cardioversion for atrial fibrillation: Recovery of quantitative parameters

Cardiovascular Aspects of Radiolog

Mouse models of cystic fibrosis: Phenotypic analysis and research applications

AbstractGenetically modified mice have been studied for more than fifteen years as models of cystic fibrosis (CF). The large amount of experimental data generated illuminates the complex multi-organ pathology of CF and raises new questions relevant to human disease. CF mice have also been used to test experimental therapies prior to clinical trials. This review recapitulates the major phenotypic traits of CF mice and highlights important new findings including aberrant alveolar macrophages, bone and cartilage abnormalities and abnormal bioactive lipid metabolism. Novel data are presented on the intestinal and nasal physiology of F508del-CFTR CF mice backcrossed onto different genetic backgrounds. Caveats, and sources of variability including age, gender and animal husbandry, are discussed. Interspecies differences limit comparison of lung pathology in CF mice to the human disease. The recent development of genetically modified pigs and ferrets heralds the application of more advanced animal models to CF research and drug development