Mental health in mothers and fathers of children with chronic disorders.

Objective: This study applied the Family Systems Illness Model to examine how child disorder severity influences mental health in mothers and fathers of children with chronic (mainly developmental) disorders (CD). Methods: We measured parental mental health and perceived child disorder severity among 204 mothers and 125 fathers of 220 children with CD and compared the mental health scores with norms. We analyzed how much of the variance in parental mental health was explained by child disorder severity, including discrepancy between maternally and paternally perceived severity. Results: Compared to norms, we found elevated mental health problems in both mothers (d = 0.45) and fathers (d = 0.20) of children with CD. Mothers had higher scores than fathers on both mental health problems (d = 0.63) and severity (d = 0.43). Perceived disorder severity was similarly associated with mental health problems for mothers (ß = 0.23) and fathers (ß = 0.34). Discrepancy between maternal and paternal perceived disorder severity did not influence parental mental health. Conclusion: Findings suggest gender-specific challenges in parenting children with CD. Subjective perception of disorder severity plays a substantial role for parental mental health. Innovation: This comparative study of mothers and fathers contributes to a predominantly mother-focused field.

Conceptualizing burnout from the perspective of parents of children with complex care needs.

Objective: The purpose of this study was to investigate how parents of children with complex care needs conceptualize burnout from the perspective of parents themselves. Methods: We conducted semi-structured interviews with 38 parents, selected for maximal variation in parental, child, and family characteristics. Inductive thematic analysis was employed. Results: Burnout was conceptualized as encompassing three themes: having a reoccurring long-term nature, commencing with symptoms of stress progressing into exhaustion, and ending in a survival mode wherein parents worked hard to project an image of everything being well and under control (fighting) while distancing physically and emotionally from others and themselves (fleeing). Conclusion: Burnout involves specific aspects of caregiving and parenting, such as long-term responsibility for the child, which cannot be relinquished. Furthermore, burnout may also be 'hidden': not always showing to the outside world, which requires extra attention and vigilance among parent's informal and formal networks. Awareness of the various interpretations of the term may foster constructive communication. Innovation: Focusing on parents' individual experiences has illuminated new aspects of burnout. By purposively sampling a variety of parents of children with complex care needs, a broader understanding of the meaning of the term 'burnout' from the perspective of parents was achieved.

Cultural applicability and desirability of 'Broodles': The first serious game intervention for siblings of children with disabilities.

Objective: Serious games can serve as easily accessible interventions to support siblings of children with disabilities, who are at risk of developing mental health problems. The Dutch serious game 'Broodles' was developed for siblings aged 6-9 years. The current study aims to assess the cultural applicability, desirability, feasibility, and acceptability of 'Broodles' in Norway. Methods: Norwegian siblings (N = 16) aged 6-13 years and parents (N = 12) of children with intellectual disabilities assessed the game. Their feedback data from interviews and questionnaires were sorted using a model of engagement factors in serious games. Results: At pre-use, participants showed interest in the game, and after initial use the participants were overall positive about the format, content and objectives, including validation of emotions and recognition. The participants had suggestions for improved engagement and feasibility. Conclusion: The game was found to be culturally applicable, desirable and acceptable, although Norwegian translation is necessary for further evaluation. Recommendations to enhance engagement were provided, including suggestions to play the game with parents or in a group. Innovation: This initial assessment of the serious game Broodles in a non-Dutch setting shows promise for an innovative way of supporting siblings of children with disabilities.

Parent-perceived autonomy-supportive experiences and basic psychological needs of people with complex support needs: Development and preliminary psychometric evaluation of two questionnaires.

Background: Understanding and supporting basic psychological needs of persons with complex support needs is important but difficult because of communicative challenges . We developed and tested questionnaires to obtain parents' perspectives on autonomy support and basic psychological needs of autonomy, competence, and relatedness. Method: Two parent-informant questionnaires were developed, administered, and subjected to psychometric property analyses. Participants were 63 Dutch parents of persons diagnosed with severe or profound intellectual and multiple disabilities. Results: Principal component analyses revealed a one-factor structure for the Parental Perceptions on Autonomy-Supportive Experiences questionnaire, while the Parental Perceptions on Basic Psychological Need Signals questionnaire yielded two-factors interpreted as Noticing Signals of Autonomy and Noticing Signals of Competence/Relatedness. Evidence for construct validity was found for both instruments. Conclusions: Preliminary evaluation of the new questionnaires is encouraging, but further validation with a larger sample size is warranted.

Effectiveness of the mentalisation-based serious game 'You & I' for adults with mild to borderline intellectual disabilities: A randomised controlled trial.

BACKGROUND: Mentalising and stress regulation pose challenges for adults with mild to borderline intellectual disabilities (MBID), emphasising the importance of an intervention program. The study examined the effectiveness and social validity of the serious game 'You & I' in enhancing mentalising and stress regulation among adults with MBID. METHOD: A randomised controlled superiority trial with experimental and waitlist-control groups was conducted with 159 adults with MBID (Mage = 36) at baseline, post-test, and follow-up. Analyses investigated the effects on aspects of mentalising, stress regulation, and social validity. RESULTS: The experimental group showed decreased stress from negative interpersonal relations, while the control group experienced increased stress (d = 0.26). There were no significant effects on mentalising, but positive user expectations and experiences were reported. CONCLUSIONS: This initial study on 'You & I' provides limited evidence of its effectiveness for people with MBID, warranting further examination of the potential of serious games.

Lessons learned from the adaptation of the Reflective Functioning Questionnaire (RFQ) for Dutch people with mild to borderline intellectual disabilities.

BACKGROUND: People with mild to borderline intellectual disabilities (MBIDs) face challenges in social functioning, possibly as a result of limited mentalising abilities such as reflecting on the behaviour of themselves and others. Reflective functioning in people with MBIDs has not yet been investigated due to a lack of instruments. The Reflective Functioning Questionnaire (RFQ) is a seemingly easy adaptable, short self-report questionnaire. The aim of the present, explorative study was to adapt the RFQ for people with MBIDs and investigate the psychometric properties and correlations with other mentalising related constructs. The formulation of the items was adapted to the target group and items were added to broaden the scope towards reflection on both the self and other. METHOD: Participants were 159 adults with MBIDs who completed a Dutch-translated and easy-to-read RFQ with five supplemental items, a questionnaire for autistic traits, a self-report questionnaire assessing perspective taking and two performance-based measures assessing emotion recognition and Theory of Mind. RESULTS: Confirmatory factor analysis confirmed the factor structure of the RFQ and revealed a two-factor structure with a Self and Other subscale. Generally satisfactory internal consistency and test-retest reliability were found. Explorative results showed correlations of the RFQ-8 and RFQ subscales with autistic traits and between the RFQ Other and perspective taking. CONCLUSIONS: This explorative study is the first testing psychometric properties of the RFQ as a self-report questionnaire for assessing reflective functioning in adults with MBIDs. This step is relevant in gaining more scientific knowledge on assessing mentalising in people with MBIDs.

The effectiveness of the serious game "Broodles" for siblings of children with intellectual disabilities and/or visual impairment: study protocol for a randomized controlled trial.

BACKGROUND: Siblings of children with disabilities also need support. However, there are only a few evidence-based interventions for these siblings. The current study aims to assess the effectiveness of a newly developed serious game for young siblings of children with intellectual disability (ID) and/or visual impairment (VI). This serious game is hypothesized to improve sibling's quality of life, adjustment to their brother's or sister's disability, and multiple aspects of psychosocial well-being. METHODS: The intervention consists of a serious game called "Broodles" (in Dutch: "Broedels") that helps children to recognize and deal with thoughts, feelings, and difficult situations. The game consists of eight 20-minute levels that all have the same structure with eight game elements. Each level addresses a domain of sibling quality of life and combines animations, mini-documentaries, fun mini-games, and multiple-choice questions. In addition to the game, siblings make a worksheet after playing each level. In order to support the child, the parents or caregivers receive a short brochure with information and tips. The effectiveness of the intervention will be investigated among a sample of 154 children aged 6-9 years and their parents or caregivers, using a two-arm parallel RCT design. The experimental group will play the serious game "Broodles" over a period of 4 weeks, whereas the control group will be placed on a waiting list. Assessments will take place at three time points: pre-test (week 1), post-test (week 5), and follow-up (weeks 12-14). At each timepoint, children and parents will complete several questionnaires on quality of life and different aspects of psychosocial well-being. In addition, children will make drawings to assess the sibling relationship. Next to that, parents and children will answer closed and open-ended questions about the sibling adjustment to their brother or sister's disability. Finally, parents and children will evaluate the serious game through closed and open-ended questions. DISCUSSION: This study contributes to the knowledge about sibling interventions and serious games. Additionally, if the serious game is proven to be effective, it will be a readily available, easily accessible, and free of charge intervention for siblings. TRIAL REGISTRATION: ClinicalTrials.gov, NCT05376007, registered prospectively on April 21, 2022.

Improving social participation of adolescents with a visual impairment with community-based mentoring: results from a randomized controlled trial.

Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.Materials and methods: Adolescents (15-22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI -0.30, 0.21, d = 0.1]; social participation composite [95% CI -0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.Implications for rehabilitationA community-based mentoring program resulted in no benefits for adolescents with a visual impairment on their social participation.A community-based mentoring program should not replace care-as-usual provided to young people with a visual impairment in the Netherlands. It could only be thought of as an additional service within rehabilitation.Matching mentees and mentors based on sharing the same disability could strengthen the effect of a community-based mentoring program. However, these benefits are rather small.Providing additional support for the social participation of young people with a visual impairment might be especially helpful for those with a progressive impairment and with comorbid problems.

Mediators and Treatment Factors in Intervention for Children Exposed to Interparental Violence.

Changes in children's emotion differentiation, coping skills, parenting stress, parental psychopathology, and parent-child interaction were explored as mediators of treatment factors in two selective preventive group interventions for children exposed to interparental violence (IPV) and their parents. One hundred thirty-four IPV-exposed children (ages 6-12 years, 52% boys) and their parents were randomized to an IPV-focused or common factors community-based group intervention and completed baseline, posttest, and follow-up assessments for posttraumatic stress (PTS). A multilevel model tested mediators that included children's ability to differentiate emotions and coping skills, parenting stress, parental psychopathology, and parent-child interactions. In both conditions, exposure to nonspecific factors, specific factors unrelated to IPV and trauma-specific intervention factors was coded from videotaped child and parent sessions. Improved parental mental health mediated the link between greater exposure to nonspecific treatment factors and decreases in PTS symptoms. In addition, an increase in emotion differentiation and a decrease in parenting stress were associated with a decrease in PTS symptoms. Greater exposure to trauma-specific factors in child sessions was associated with a small decrease in emotion differentiation, an increase in coping skills, and a decrease in PTS symptoms over time. Greater exposure to nonspecific treatment factors in child and parent sessions was associated with more positive parent-child interaction. Parental mental health appears to be an important mechanism of change that can be promoted through exposure to nonspecific factors in parent intervention. For children, the effect of greater exposure to trauma-specific factors in intervention is less clear and may not have clear benefits.

Neuroticism and extraversion in relation to physiological stress reactivity during adolescence.

The current study examined mean level and change in extraversion and neuroticism across adolescence in relation to physiological stress reactivity to social evaluation. Adolescents (n=327) from the Dutch general population reported on personality measures at five annual assessments. At age 17 years, adolescents participated in a psychosocial stress procedure characterized by social evaluation during which cortisol, heart rate, pre-ejection period (PEP) and heart rate variability were assessed. Dual latent growth curve models were fitted in which the intercepts (mean level) and slopes (change) of personality across adolescence predicted the intercepts (baseline) and slopes (reactivity) of the physiological stress measures. Most comparisons revealed no relation between personality and stress reactivity. Adolescents with higher mean level scores on extraversion did show lower cortisol reactivity. Adolescents with higher mean level neuroticism scores showed higher PEP reactivity. Our findings lend partial support for a relation between personality and physiological stress reactivity.

Social support moderates the effects of stress on sleep in adolescents.

Academic expectations and demands become primary sources of stress during adolescence, negatively affecting sleep. To cope with stress, adolescents may turn to social support figures. The present study tested the extent of main and moderating effects of various sources of social support on the association between stress and sleep. Adolescents (n = 202, meanage 14.6 years, standard deviation = 0.71) reported on academic stress, sleep, and support using questionnaires during a low- and high-stress period, defined by the absence or presence of examinations, respectively. Inquiries were made regarding social support from parents, friends, and class supervisor. During both stress periods, academic stress was associated negatively with sleep quality and positively with sleep reduction. Social support increased sleep quality and lowered sleep reduction. In addition, social support moderated the effects of academic stress on sleep, thus improving sleep quality and lowering sleep reduction. Moderating effects were stronger during a period of high stress. The present study showed that adolescents can benefit from stress moderation through social support by improvements of sleep quality and sleep reduction. Such moderating effects should be taken into account when studying stress and sleep. Implications and recommendations based on these findings are discussed.

Children's intervention strategies in situations of victimization by bullying: social cognitions of outsiders versus defenders.

This study examined the social cognitions of outsiders and defenders about intervening in situations of victimization by bullying. Do outsiders and defenders behave differently in victimization situations because of differences in competence beliefs, or because of a selectivity effect in intervening? These issues were examined in a sample of 102 outsiders and 107 defenders who were classified into these bullying roles through a peer-nomination procedure out of a total sample of 761 10- to 14-year-old Dutch children. These children were presented with imaginary victimization events. They answered questions about their cognitions and self-efficacy beliefs about intervening in victimization situations and about handling such situations. Outsiders, compared to defenders, claimed to intervene indirectly in victimization situations rather than directly. Defenders, compared to outsiders, claimed to intervene directly in victimization situations rather than indirectly. Both outsiders and defenders claimed to be more likely to intervene when a friend was being victimized than when a neutral classmate was being victimized. Outsiders and defenders did not differ in their self-efficacy for indirect intervention, but only defenders claimed a high self-efficacy for direct intervention. Both outsiders and defenders claimed to benefit from direct help when they themselves are victimized, but only outsiders also reported to need indirect help. The results suggest that outsiders and defenders behave differently in victimization situations because of differences in competence beliefs rather than because of a selectivity effect. More generally, the results suggest that not only defenders but also outsiders have the intention to help children who are being bullied. However, outsiders' anti-bullying attempts are likely to be indirect and less firm than those of defenders.

Efficacy of psychosocial group intervention for children with chronic illness and their parents.

OBJECTIVE: To investigate the efficacy of a cognitive-behavioral group intervention for children with chronic illnesses and to test the effect of an added parent component. METHODS: Children (n = 194) and their parents participated in a multicenter randomized clinical trial comparing a child-only intervention and a parent-child intervention to a wait-list control group. Primary outcomes were parent- and self-reported internalizing and externalizing problems; secondary outcomes were child disease-related coping skills (information seeking, relaxation, social competence, medical compliance, and positive thinking). Assessments took place at baseline and at 6- and 12-month follow-ups. Intention-to-treat mixed-model analyses were performed to test the difference in change in outcomes. RESULTS: The intervention had a positive effect on changes in parent-reported internalizing problems, child-reported externalizing problems, information seeking, social competence, and positive thinking. The additional effect of parental involvement was observed on parent-reported internalizing problems, child-reported externalizing problems, information seeking, and social competence. Illness severity and illness type did not moderate the effects. There were no intervention effects on child-reported internalizing problems, parent-reported externalizing problems, relaxation, or medical compliance. Of the families in the wait-list control group, 74% sought alternative psychological support during the intervention period. CONCLUSIONS: This RCT supports the efficacy of a protocol-based group intervention for children with chronic illnesses and their parents. Adding a parental component to the intervention contributed to the persistence of the effects. Future research should focus on moderating and mediating effects of the intervention.

Adverse childhood experiences of referred children exposed to intimate partner violence: consequences for their wellbeing.

OBJECTIVE: This study investigated the relationships among Adverse Childhood Experiences (ACEs) in a high risk clinical sample of Dutch children whose mothers were abused by an intimate partner, and the severity of behavioral and emotional problems and trauma symptoms. METHODS: The study population comprised 208 children (M=7.81 years, SD=2.39, range 2-12) who were referred to mental health and welfare institutions after reported Intimate Partner Violence (IPV). At intake, caregivers, children, and teachers completed questionnaires on Adverse Childhood Experiences, behavior and emotional problems, and trauma symptoms. RESULTS: The results showed that child witnesses of IPV were also exposed to other adverse experiences, such as abuse, household dysfunction and neglect. The mean number of ACEs was 5.08 (range 2-9). Twenty percent of the children in this sample experienced seven ACEs or more. The number of ACEs children were exposed to was unrelated to the level of emotional and behavioral problems, except for trauma related symptoms reported by parents. CONCLUSIONS: This study shows that children who witnessed Intimate Partner Violence were also exposed to other adverse experiences. The results of this study may imply that in this high-risk clinical sample of children exposed to IPV, additional adverse experiences have a limited relationship to psychological outcomes. PRACTICE IMPLICATIONS: A thorough assessment and inclusion of all Adverse Childhood Experiences is necessary for a comprehensive treatment program.

A cognitive behavioral based group intervention for children with a chronic illness and their parents: a multicentre randomized controlled trial.

BACKGROUND: Coping with a chronic illness (CI) challenges children's psychosocial functioning and wellbeing. Cognitive-behavioral intervention programs that focus on teaching the active use of coping strategies may prevent children with CI from developing psychosocial problems. Involvement of parents in the intervention program may enhance the use of learned coping strategies in daily life, especially on the long-term. The primary aim of the present study is to examine the effectiveness of a cognitive behavioral based group intervention (called 'Op Koers') 1 for children with CI and of a parallel intervention for their parents. A secondary objective is to investigate why and for whom this intervention works, in order to understand the underlying mechanisms of the intervention effect. METHODS/DESIGN: This study is a multicentre randomized controlled trial. Participants are children (8 to 18 years of age) with a chronic illness, and their parents, recruited from seven participating hospitals in the Netherlands. Participants are randomly allocated to two intervention groups (the child intervention group and the child intervention combined with a parent program) and a wait-list control group. Primary outcomes are child psychosocial functioning, wellbeing and child disease related coping skills. Secondary outcomes are child quality of life, child general coping skills, child self-perception, parental stress, quality of parent-child interaction, and parental perceived vulnerability. Outcomes are evaluated at baseline, after 6 weeks of treatment, and at a 6 and 12-month follow-up period. The analyses will be performed on the basis of an intention-to-treat population. DISCUSSION: This study evaluates the effectiveness of a group intervention improving psychosocial functioning in children with CI and their parents. If proven effective, the intervention will be implemented in clinical practice. Strengths and limitations of the study design are discussed. TRIAL REGISTRATION: Current Controlled Trials ISRCTN60919570.

Physiological regulation of stress in referred adolescents: the role of the parent-adolescent relationship.

BACKGROUND: Psychopathology in youth appears to be linked to deficits in regulating affective responses to stressful situations. In children, high-quality parental support facilitates affect regulation. However, in adolescence, the role of parent-child interaction in the regulation of affect is unclear. This study examined physiological reactivity to and recovery from stress in adolescents at risk for psychopathology, and their associations with internalising and externalising problems and parent-adolescent interactions. METHODS: A total of 99 adolescents (M = 13.57 years, SD = 1.83) with a history of mental health problems underwent the Alarm Stress Task and were reunited with their primary caregiver after the stressor, while the physiological responses of the parasympathetic (respiratory sinus arrhythmia) and sympathetic (pre-ejection period) systems were measured. The quality of parent-adolescent interaction was determined from observations of secure-base seeking and providing during the task. Affect regulation was measured as physiological reactivity and recovery after the stressor. RESULTS: Adolescents with high levels of externalising problems and low levels of secure-base support showed weaker parasympathetic reactivity and recovery. Higher level of adolescent secure-base seeking was associated with stronger sympathetic reactivity and recovery. CONCLUSIONS: Secure-base interactions between parents and adolescents facilitate physiological regulation of stress, especially for adolescents with externalising symptomatology.

Physiological reactivity to stress and parental support: comparison of clinical and non-clinical adolescents.

An Alarm Stress Task was developed to study affect regulation in the context of parent-child interactions in adolescents (mean age = 12.72, standard deviation = 2.06) with (n = 20) and without (n = 20) mental health problems. Changes in heart rate (HR), preejection period (PEP) and respiratory sinus arrhythmia (RSA) were used as indicators of affect regulation. HR increased, and PEP and RSA decreased significantly in reaction to a suggested failure on a simple task, indicating that this procedure induced affective arousal in adolescents. During reunion with the parent, RSA increased significantly. Support seeking on reunion was associated with stronger parasympathetic reactivity during stress and reunion, consistent with the model that the parasympathetic system is involved when affect is regulated by social engagement. Quality of parent-adolescent interactive behaviour was overall lower in the clinical sample. Individual and relationship-based processes of affect regulation may be simultaneously assessed, highlighting the continuing importance of the parent-child relationship in adolescence for affect regulation and mental health.

Change in psychopathology in referred children: the role of life events and perceived stress.

BACKGROUND: This study examined the relation between stress and change in emotional and behavioural problems in children and adolescents referred for mental health services. METHOD: At three waves across four years, children and their parents (N = 310, mean age at the first wave = 11.26 years, SD = 3.18) reported emotional and behavioural problems, as well as stressful life events (parent report) and perceived stress (child report). RESULTS: Major life events before referral were associated with higher levels of parent-reported internalising and externalising problems at referral. Life events after referral were associated with a slower recovery from internalising problems. The associations between stressful life events and the course of parent- and self-reported problems were mediated by children's subjective feelings of stress. CONCLUSION: Stressful life events appear to interfere with recovery from internalising problems in the years after referral through increasing the experience of stress in daily life.