Siblings of children with chronic disorders are at increased risk of experiencing family communication problems and poorer mental health. We assessed initial feasibility, acceptability, and outcomes ...of SIBS; a manual-based group intervention for siblings and parents of children with chronic disorders, aiming to improve parent-sibling communication and sibling mental health. Ninety-nine siblings aged 8–16 years (
M
= 11.5 years,
SD
= 2.0; 54.5% girls) and parents (63.6% mothers) of children with chronic disorders participated in three separate group sessions for siblings and parents and two joint sessions with integrated sibling-parent dialogues. We assessed participant satisfaction post-intervention and checked for group leader manual adherence. We measured the following outcomes at baseline, three, and six months post-intervention in an open trial: (1) parent-sibling communication quality; (2) sibling emotional and behavioral problems; (3) sibling adaptation to the disorder; and (4) sibling disorder knowledge. Using growth curve modeling, we found significant improvement in parent-sibling communication quality (p = 0.001), emotional and behavioral problems (p = 0.009), adaptation to the disorder (p = 0.003), and disorder knowledge (p = 0.000) from baseline to follow-up (effect sizes
d
= 0.22 to 0.64). Improvement in sibling-reported emotional and behavioral problems and adaptation to the disorder was partly explained by communication quality. User satisfaction was high and manual adherence was good. Our evaluation yields support for the SIBS intervention, with initial evidence of acceptability, feasibility, and beneficial outcomes. Our study suggests targeting parent-sibling communication may be a beneficial way of improving siblings’ mental health.
Highlights
SIBS is a novel five-session intervention for siblings as next of kin.
An open trial showed beneficial sibling outcomes after participating in SIBS.
Both siblings and parents reported high satisfaction with SIBS.
Involving parents actively may be key to sibling interventions.
Targeting parent-child communication may represent useful sibling support.
Parents of children with a disability experience elevated levels of stress compared to parents of typically developing children, which represents a risk for their couple relationship. Research on ...families where a child has a disability is principally based on mothers. More knowledge is needed about the paternal perspective. We conducted semi-structured interviews with seven fathers (aged 36–54 years) of children with a disability (primary school age to early twenties). We analyzed the material using qualitative conventional content analysis, focusing on participants’ descriptions of couple relationships. We categorized the participants’ descriptions in two main categories: Couplehood and Co-parenting. Throughout the material, partners were described as romantic partners, co-parents, and collaborators. Participants described that couple communication and emotional expression within couples were affected by parenting a child with a disability. Moreover, participants described influence by cultural masculinity norms on their involvement as partners and parents, and on the dynamic within their couple relationships. An uneven division of labor was described. A practice implication is that communication and emotional expression styles within the parental couple should be a key focus when working with families of children with a disability. The findings also suggest more active involvement of fathers in children’s health care.
Mothers' and fathers' internalizing symptoms may influence children's anxiety symptoms differently.
To explore the relationship between parental internalizing symptoms and children's anxiety symptoms ...in a clinical sample of children with anxiety disorders.
The sample was recruited through community mental health clinics for a randomized controlled anxiety treatment trial. At pre-intervention, children (
= 182), mothers (
= 165), and fathers (
= 72) reported children's anxiety symptoms. Mothers and fathers also reported their own internalizing symptoms. The children were aged 8 to 15 years (
= 11.5 years, SD = 2.1, 52.2% girls) and all had a diagnosis of separation anxiety, social phobia, and/or generalized anxiety disorder. We examined parental internalizing symptoms as predictors of child anxiety symptoms in multiple regression models.
Both mother and father rated internalizing symptoms predicted children's self-rated anxiety levels (adj.
= 22.0%). Mother-rated internalizing symptoms predicted mother-rated anxiety symptoms in children (adj.
= 7.0%). Father-rated internalizing symptoms did not predict father-rated anxiety in children.
Clinicians should incorporate parental level of internalizing symptoms in their case conceptualizations.
Adolescents with rare genetic disorders represent a population that can be at risk in psychosocial terms. Despite its importance, the association of autism traits and social withdrawal in behavioral ...and emotional problems in adolescents with rare genetic disorders remains understudied.
The study aimed to empirically examine the clinical characteristics of adolescents with rare genetic disorders with a behavior theory-driven approach.
We investigated the behavioral and emotional problems and current and lifetime autistic traits in a sample of 93 Norwegian adolescents (Mage = 13.2 years, SDage = 2.4, rangeage 10–17, 62.4% females, 37.6% males) with various rare genetic disorders. The adolescents were investigated cross-sectionally utilizing standardized psychometric questionnaires rated by their parents.
More current and lifetime autistic traits and social withdrawal were all associated with more internalizing problems. Further analyses demonstrated that social withdrawal partially mediated the positive association between current autistic traits and internalizing problems. In contrast, social withdrawal fully mediated the positive association between lifetime autistic traits and internalizing problems.
Our results demonstrate important characteristics of adolescents with rare genetic disorders that may guide clinicians and future interventions. Social withdrawal may be prodromal to internalizing problems such as anxiety and depression. Thus, clinically addressing social withdrawal can represent a means to prevent internalizing problems in adolescents with rare genetic disorders and autistic traits.
•Adolescents with rare disorders represent a population that may be particularly socially vulnerable.•Social withdrawal and autistic traits are important unmet needs of adolescents with rare diseases.•Social withdrawal is a pivotal mediator between autism traits and internalizing problems in adolescents with rare diseases.•Behavioral interventions should address social withdrawal to avert escalating internalizing problems.
Parent–child communication represents an important variable in clinical child and family psychology due to its association with a variety of psychosocial outcomes. To give an overview of instruments ...designed to measure the quality of parent–child communication from the child’s (8–21 years) perspective and to assess the psychometric quality of these instruments, we performed a systematic literature search in Medline and PsycInfo (last: February 25, 2022). Peer-reviewed journal articles published in English with a child-rated instrument measuring the quality of parent–child communication were included. Initial screening for eligibility and inclusion, subsequent data extraction, and quality assessment were conducted by couples of review team members. Based on the screening of 5115 articles, 106 studies reported in 126 papers were included. We identified 12 parent–child communication instruments across the studies. The Parent-Adolescent Communication Scale (PACS) was used in 75% of the studies. On average, the evidence for psychometric quality of the instruments was low. Few instruments were used in clinical and at-risk samples. Several instruments are available to rate parent–child communication from the child’s perspective. However, their psychometric evidence is limited and the theoretical foundation is largely undocumented. This review has limitations with regard to selection criteria and language bias.
Registration
PROSPERO: CRD42021255264.
•Adults with rare disorders had poorer mental health than persons without disorders.•Adults with rare disorders had more COVID-19 anxiety than persons without disorders.•Mental health and COVID-19 ...anxiety were moderately associated in adults with rare disorders.•We recommend practitioners to assess mental health in adults with rare disorders.•We recommend practitioners to assess COVID-19 anxiety in adults with rare disorders.
For adults with rare disorders, COVID-19 can be more severe and deadlier. This may lead to anxiety about COVID-19 among adults with rare disorders, including worries about being infected. COVID-19 anxiety is linked with mental health problems in the general population.
To examine the levels of mental health problems and COVID-19 anxiety, and their association, among adults with rare disorders.
Adults with rare disorders (N = 58, Mage = 45.2 years, SD = 12.7, 69.0 % females, 31.0 % males) answered standardized mental health and COVID-19 anxiety questionnaires online. Their scores were compared with samples without rare disorders.
Mental health problems were higher than in a sample without rare disorders (effect size d = 1.14), as was COVID-19 anxiety (effect size d = 0.53). COVID-19 anxiety correlated significantly with mental health problems (r = 0.46). Controlling for age, gender, and work status, COVID-19 anxiety explained 16.1 % of the variance in mental health problems (ΔR2 = 0.161, p = 0.001).
COVID-19 anxiety is higher than norms and associated with mental health problems for adults with rare disorders. During the pandemic, clinicians are recommended to assess COVID-19 anxiety for patients with rare disorders.
Social support is a protective factor for siblings of children with neurodevelopmental disorders.
We reviewed studies on social support received by siblings of children with neurodevelopmental ...disorders.
We conducted a pre-registered systematic review (CRD42020207686), searching PsycINFO, MEDLINE, Web of Science, and Scopus.
Fifteen articles were eligible for the review, 13 of which used cross-sectional designs. Two studies investigated sibling social support after an intervention. Multiple variables were negatively related to social support (e.g., sibling depression, loneliness, stress). Variables that were positively related to social support included prosocial behavior, competence (academic, social, and activity-related), problem-focused coping, and family quality of life. Potential moderators of the relationship between social support and psychosocial adjustment included the type of disorder of the affected sibling and the type of social support provider. We conclude with an overview of the reliability and validity of the seven social support measurements used across the studies.
Lower levels of social support are associated with more negative psychosocial adjustment among siblings of children with neurodevelopmental disorders. We encourage future researchers to further investigate ways to increase social support for siblings to improve outcomes.
•Social support is an important protective factor for siblings of children with neurodevelopmental disorders.•Lower levels of social support have been linked to more negative psychosocial adjustment among these siblings.•Higher levels of social support were related to higher psychosocial functioning.•Siblings of children with autism reported lower social support compared to siblings of children with other disorders.•We found high heterogeneity in measures of social support in the selected studies.
The current paper systematically reviews and meta-analyses the effectiveness of early behavioral interventions (BI) for children with autism spectrum disorder (ASD) in routine clinical care. The ...effectiveness of BI, methodological study quality, and moderators of treatment outcome were examined and benchmarked with efficacy studies. The quality of the evidence was assessed with the Cochrane risk of bias tool. Twenty-nine studies were included, comprising 1,422 participants. Medium to large within-group effect sizes (g = 0.76-1.27) were found post-treatment for the outcome domains adaptive behavior, cognition, communication, and socialization, with large average effect size at post (g = 0.94) and at follow-up (g = 1.08). Comparison of effectiveness and efficacy studies showed that evidence-based early BI in routine clinical care yielded effects comparable to university research settings. The limitations include potential language and publication bias. The findings support evidence-based behavioral treatments delivered in routine clinical care as efficacious in reducing ASD symptoms. PROSPERO registration: ID CRD42020212833.
Public Health Significance Statement
Early behavioral interventions for autism spectrum disorders in children treated in routine clinical care was found efficacious in reducing symptoms within the outcome domains adaptive behavior, cognition, communication, and socialization, with medium to large within-group effect sizes at post-treatment and follow-up. The outcome of effectiveness studies was similar to that of efficacy studies. Our findings suggest that clinicians and patients can be confident about the effectiveness of early behavioral interventions with already established efficacy when delivered in routine clinical care. As treatment effects are not lost when evidence-based treatment programs are transported from research clinics to routine clinical care, further implementation of evidence-based interventions is needed in routine clinical care for children with autism disorders.
Meta-analyses of school-based CBT have shown that prevention for anxiety symptoms typically report small but significant effects. There is limited knowledge regarding which youths may benefit most ...and least from such programs, and characteristics of youth who respond differentially to interventions of different intensity. The present study examined predictors of school-based CBT outcomes among 302 youths (mean age 14.0 years, SD 0.8, 84% female) who participated in a randomized waitlist-controlled trial comparing a 10-session and a 5-session group intervention. Potential predictors included youth and parental factors, and credibility and expectancy of the interventions. Pre-intervention anxiety and depression levels, and clinician rated severity were examined as moderators of intervention effects. Outcomes were youth-, and parent-reported youth anxiety and depressive symptoms at post-intervention and 1-year follow-up. Higher parent-reported impairment from youth anxiety predicted larger parent-reported anxiety and depressive symptom change, whereas higher caregiver strain was associated with less symptom change. Higher parent rated credibility and expectancy was associated with improved outcomes at post-intervention. At 1-year follow-up, no predictors of outcome were identified. No moderators were identified. Families with high levels of caregiver strain associated with youth anxiety may need extra support regardless of length of intervention program. Parents’ credibility and expectancy of interventions should be targeted to optimize school-based CBT.
•Knowledge of predictors and moderators of school-based indicated prevention for anxiety is limited.•Predictors of school-based group CBT outcomes among 302 youths were examined.•Moderators of intervention effects (10-session and 5-session) were examined.•Families with high levels of caregiver strain may need extra support regardless of length of intervention program.•Parents' credibility and expectancy ratings should be targeted to optimize school-based CBT.
Siblings of children with chronic disorders are at increased risk of mental health problems. Predictors of siblings’ mental health require further study to identify children in need of interventions ...and to design effective intervention programs. Siblings of children with chronic disorders (n = 107; M age = 11.5 years; SD = 2.1, 54.6% girls) and their parents (n = 199; 50.3% mothers) were included in a survey study. Siblings and parents completed questionnaires on mental health. Siblings completed questionnaires on parent–child communication, relationships with parents, and an adjustment measure on the sibling situation. Multiple linear regression analyses were applied to identify predictors of siblings’ mental health. Sibling-reported relationship with parents was a significant predictor of sibling mental health reported by siblings, fathers, and mothers (R
2
= 0.26 - R
2
= 0.46). Siblings’ adjustment was significantly associated with fathers’ report of siblings’ mental health (r = .36), but not mothers’ report (r = .17). Siblings’ relationships (d = 0.26) and communication (d = 0.33) with mothers were significantly better than with fathers. We conclude that the sibling–parent relationship is a significant factor in identifying siblings at risk and that family-based intervention programs should be developed.
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