To promote the return of juveniles to a home-like environment (e.g. living with (foster)parents) after secure residential treatment (SRT), it is important to know which factors are related to this outcome. The current study examined which characteristics of the juvenile, family, and SRT, including family centeredness and use of systemic interventions, are related to the living situation after discharge. For 259 juveniles (mean age 15.82 years, 127 girls) in SRT and their parents, questionnaires were administered at admission, discharge, and 6-months follow-up. Furthermore, information about the living situation before and after SRT was gathered. Higher likelihood of living in a home-like setting after SRT correlated with more furlough moments with parents, receiving a systemic intervention, and a shorter duration of the SRT. Systemic interventions during SRT and spending furlough moments with parents may have a positive impact on returning to a home-like situation after SRT for juveniles.

In the study of synchronization dynamics between interacting systems, several techniques are available to estimate coupling strength and coupling direction. Currently, there is no general 'best' method that will perform well in most contexts. Inter-system recurrence networks (IRN) combine auto-recurrence and cross-recurrence matrices to create a graph that represents interacting networks. The method is appealing because it is based on cross-recurrence quantification analysis, a well-developed method for studying synchronization between 2 systems, which can be expanded in the IRN framework to include N > 2 interacting networks. In this study we examine whether IRN can be used to analyze coupling dynamics between physiological variables (acceleration, blood volume pressure, electrodermal activity, heart rate and skin temperature) observed in a client in residential care with severe to profound intellectual disabilities (SPID) and their professional caregiver. Based on the cross-clustering coefficients of the IRN conclusions about the coupling direction (client or caregiver drives the interaction) can be drawn, however, deciding between bi-directional coupling or no coupling remains a challenge. Constructing the full IRN, based on the multivariate time series of five coupled processes, reveals the existence of potential feedback loops. Further study is needed to be able to determine dynamics of coupling between the different layers.

Abstract Background Challenging behaviors like aggression and self-injury are dangerous for clients and staff in residential care. These behaviors are not well understood and therefore often labeled as “complex”. Yet it remains vague what this supposed complexity exactly entails at the individual level. The current case-study used a mixed-methods analytical strategy, inspired by complex systems theory, that consisted of three steps. First, we construed a holistic summary of the client’s relevant factors in her daily life. Second, we described her challenging behavioral trajectory by identifying stable phases. Third, instability and extraordinary events in her environment were evaluated as potential mechanisms for changes between different phases. Case presentation A woman, living at a residential facility, with mild intellectual disability and borderline personality disorder with a chronic pattern of aggressive and self-injurious incidents. She used ecological momentary assessments to daily self-rate challenging behaviors for 560 days. Conclusions A qualitative summary of caretaker records revealed many internal and environmental factors relevant to her daily life. Her clinician narrowed these down to 11 staff hypothesized risk- and protective factors, such as reliving trauma, experiencing pain, receiving medical care, compliments or psychological therapy. The vast multitude of bivariate associations between these 11 factors and self-reported challenging behaviors were non-significant. These null-results indicate that challenging behaviors are not governed by mono-causal if-then relations, speaking to its complex nature. Despite this complexity there were patterns in the temporal ordering of incidents. Aggression and self-injury occurred on respectively 13% and 50% of the 560 days. On this timeline, we identified 11 distinct stable phases, that were alternating between four unique states: high levels of aggression and self-injury, average levels of aggression and self-injury, low levels of aggression and self-injury, and low aggression with high self-injury. Eight out of ten transitions between phases were either triggered by extraordinary events in her environment (event-induced) or preceded by increased fluctuations in her self-ratings (instability-induced), or a combination of these two. Desirable patterns emerged more often and were less easily malleable, indicating that when the participant experiences bad times, keeping in mind better times are ahead is as hopeful as it is realistic.

ABSTRACT In the last decade, living groups in residential youth care facilities in The Netherlands have gradually grown in size with eight to twelve adolescents per group, which is related to an increase in workload and overburdened personnel. Research suggests that a smaller group size of up to six adolescents can have a positive impact on the living and working environment, and therefore small-scale facilities are advocated as a an alternative for regular residential youth care. Little is known about the experiences of residential care personnel working in these small-scale facilities. The aim of this study is to examine the impact of the transformation toward small-scale facilities from the perspective of residential care personnel. The results show, in line with previous studies, that professionals working in small-scale facilities experience a safer and more positive group climate and that they are more able to invest in a positive therapeutic relationship with the adolescents, than working on regular residential groups. Moreover, working on a group with fewer adolescents affects the working climate in a positive way. Recommendations for practice and further research are proposed.

Various Dutch secure residential youth care (SRYC) institutions are implementing a family-centered approach aiming to increase parental involvement and improve treatment outcomes. However, it remains unclear if and how family-centeredness (FC) is related to increased parental involvement and to improved treatment outcomes of adolescents. In this study, we unravelled the relation between FC, parental involvement, and behaviour problems of adolescents in SRYC. Families of 404 adolescents admitted to one of seven participating Dutch SRYC institutions completed a survey (at the start, at the end, and at 6-months follow-up) on problem behaviour of adolescents. In addition, 411 group care workers filled out a questionnaire about their residential group’s level of FC every 6 months. Moreover, the mentor of each adolescent filled out a questionnaire about the level of parental involvement. We analysed the data using multiple mediator models. Associations were found between FC and parental involvement. However, no relation was found between FC and adolescent problem behaviour, and no mediation and no moderation effects of parental involvement were found. Overall, results showed that most parents were involved during the residential stay, and, independent of FC, adolescent problem behaviour decreased over time. Implementing FC in SRYC institutions seems to be helpful in involving parents during the residential stay, but was not found to be associated with adolescent behavioural outcomes. Our results indicate that institutions could improve their level of FC by offering more informal contact moments for parents and by addressing barriers to FC among residential staff.

Individuals with mild intellectual disabilities or borderline intellectual functioning are at increased risk to develop a substance use disorder—however, effective treatment programs adapted to this target group are scarce. This study evaluated the effectiveness of Take it Personal!+ in individuals with mild intellectual disabilities or borderline intellectual functioning and substance use disorder. Take it Personal!+ is a personalized treatment based on motivational interviewing and cognitive-behavioral therapy supported by an mHealth application. Data were collected in a nonconcurrent multiple baseline single-case experimental design across individuals with four phases (i.e., baseline, treatment, posttreatment, and follow-up). Twelve participants were randomly allocated to baseline lengths varying between 7 and 11 days. Substance use quantity was assessed during baseline, treatment, and posttreatment with a daily survey using a mobile application. Visual analysis was supported with statistical analysis of the daily surveys by calculating three effect size measures in 10 participants (two participants were excluded from this analysis due to a compliance rate below 50%). Secondary, substance use severity was assessed with standardized questionnaires at baseline, posttreatment, and follow-up and analyzed by calculating the Reliable Change Index. Based on visual analysis of the daily surveys, 10 out of 12 participants showed a decrease in mean substance use quantity from baseline to treatment and, if posttreatment data were available, to posttreatment. Statistical analysis showed an effect of Take it Personal!+ in terms of a decrease in daily substance use in 8 of 10 participants from baseline to treatment and if posttreatment data were available, also to posttreatment. In addition, data of the standardized questionnaires showed a decrease in substance use severity in 8 of 12 participants. These results support the effectiveness of Take it Personal!+ in decreasing substance use in individuals with mild intellectual disabilities or borderline intellectual functioning.

Many children with mild intellectual disabilities who have parents with mental health concerns suffer from social-emotional problems. The ‘You are Okay’ program is the first to support these children and their parents. An effect study showed first promising results in decreasing children’s emotional and behavioural problems. The current study was conducted to evaluate the intervention qualitatively using experiences of the participants. A combination of questionnaires administered to 28 children and fourteen parents and in-depth interviews with three children, two parents and eight professionals were used to evaluate the experiences of the participants. Children, parents and professionals viewed ‘You are Okay,’ especially its psychoeducation, mutual recognition, and support, as valuable and useful. However, carefully matching children in support groups and screening for pre-conditions seems to be essential for successful participation. This study concluded that ‘You are Okay’ supports children with mild intellectual disabilities and their parents with mental health concerns. The findings are also in line with the results of the effect study of the program, which showed that ‘You are Okay’ supports children by decreasing their emotional and behavioural problems after participating in the program. Together these results strengthen the idea that this family-focused approach is helpful in children’s treatment.

Missense and truncating variants in the X-chromosome-linked CLCN4 gene, resulting in reduced or complete loss-of-function (LOF) of the encoded chloride/proton exchanger ClC-4, were recently demonstrated to cause a neurocognitive phenotype in both males and females. Through international clinical matchmaking and interrogation of public variant databases we assembled a database of 90 rare CLCN4 missense variants in 90 families: 41 unique and 18 recurrent variants in 49 families. For 43 families, including 22 males and 33 females, we collated detailed clinical and segregation data. To confirm causality of variants and to obtain insight into disease mechanisms, we investigated the effect on electrophysiological properties of 59 of the variants in Xenopus oocytes using extended voltage and pH ranges. Detailed analyses revealed new pathophysiological mechanisms: 25% (15/59) of variants demonstrated LOF, characterized by a “shift” of the voltage-dependent activation to more positive voltages, and nine variants resulted in a toxic gain-of-function, associated with a disrupted gate allowing inward transport at negative voltages. Functional results were not always in line with in silico pathogenicity scores, highlighting the complexity of pathogenicity assessment for accurate genetic counselling. The complex neurocognitive and psychiatric manifestations of this condition, and hitherto under-recognized impacts on growth, gastrointestinal function, and motor control are discussed. Including published cases, we summarize features in 122 individuals from 67 families with CLCN4-related neurodevelopmental condition and suggest future research directions with the aim of improving the integrated care for individuals with this diagnosis.

Background: Staff-client relationships impact the quality of support and life of people with severe to profound intellectual disabilities and challenging behavior, but are challenging to build due to clients' intense, complex and varying support needs. The present study explores the perspectives of professionals and relatives on what affects these interpersonal relationships. Method: 17 professionals and 11 relatives participated in focus groups and interviews. Data collection and analysis was performed in collaboration with a co-researcher. Data were synthesized thematically. Results: Interpersonal relationships constituted equivalence, striving for mutual understanding, trust and exploring clients' potential. The combination of staff characteristics (enthusiasm/passion, patience, resilience, creativity/humor, flexibility) and expertise (knowledge, vulnerability/sincerity, self-reflection) enabled staff to build these relationships. The importance of involving relatives was addressed. Contextual influences included the team (cooperation, flexibility, culture), organization (cooperation, boundary conditions) and setting (predictability, interior/atmosphere). Conclusions: The findings make practical knowledge explicit and scientifically underpinned for this specific population.