A Multisite Study of Family Functioning Impairment in Pediatric Obsessive-Compulsive Disorder

doi:10.1016/j.jaac.2016.12.012

Journal of the American Academy of Child & Adolescent Psychiatry

Volume 56, Issue 3, March 2017, Pages 241-249.e3

This study was presented as an abstract at the 62nd Annual Meeting of the American Academy of Child and Adolescent Psychiatry; October 26–31, 2015; San Antonio, TX.

https://doi.org/10.1016/j.jaac.2016.12.012 Get rights and content

Objective

Familial aspects of pediatric obsessive-compulsive disorder (OCD), including accommodation and treatment, have received notable and warranted attention. However, individual perspectives of its repercussions on family functioning, including emotional and occupational parental burden, have not been closely examined. The present study details this topic using a large multicenter sample.

Method

Participants included 354 youth affected with OCD and their mothers and fathers ascertained through OCD programs in Boston, Massachusetts (n = 180) and Vancouver, British Columbia (n = 174). The validated OCD Family Functioning Scale and standard OCD measurements were completed. Descriptive, between-site, and cross-perspective comparative analyses were followed by regression model testing to predict family impairment.

Results

Family functioning was negatively affected from youth, mother, and father perspectives. Impairment was reportedly more extensive at the time of worst OCD severity and was greater from maternal versus paternal viewpoints. Most frequently affected family tasks and implicated OCD symptoms included morning and bedtime routines and intrusive thoughts. Emotional repercussions in all members included stress and anxiety, followed by frustration or anger in youth and sadness in parents. Nearly half of mothers and one third of fathers reported daily occupational impairment. Compared with youth self-report, parents perceived fewer social and academic effects on their child. Family accommodation most consistently predicted family impairment, especially from parent perspectives. OCD and compulsion severity, contamination and religious obsessions, and comorbidities also predicted various perspectives of family subdomain impairment.

Conclusion

This study quantitatively details the pervasive burden that pediatric OCD places on families, as reported from complementary relative perspectives. Further attention to this topic is warranted in clinical and research realms.

Section snippets

Participants

This study reports on 354 participants recruited from 2008 to 2016 in Boston, Massachusetts and Vancouver, British Columbia, with 118 complete trio units composed of probands affected by OCD (7–19 years old, 55.3% boys), their mothers, and their fathers. Inclusion criteria required a current diagnosis of OCD according to DSM-IV-TR criteria²⁷ and written informed consent and assent of all participants. Probands with schizophrenia, severe intellectual disability, or OCD occurring exclusively in

Descriptive Data

Mean ages of OCD onset and reported worst severity were 8.4 years (standard deviation 3.4) and 12.1 years (standard deviation 3.2), respectively. Reported proband family history disclosed 14.6% with a parent diagnosed with OCD, 6% with a sibling diagnosed with OCD, and 18.8% with at least 1 diagnosed first-degree relative diagnosed with OCD. Although mean CY-BOCS scores were higher for Boston participants (t₁₀₄ = 5.10, p < .001), CGI-S scores were higher for Vancouver participants (t₇₄ = 2.83, p

Discussion

This study is the first to quantitatively highlight and detail the notable OCD-related family functioning impairment experienced by affected youth and their parents. Strengths of its design include the use of complete trios (i.e. youth, mother, and father perspectives are captured for each participating family) and recruitment of a large multisite sample to optimize generalizability of the findings. In this study, use of the self-report OFF Scale captured effects that would not have been shown

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Cited by (57)

When helping becomes hurting: An understanding of the implications of family accommodation on the effectiveness of psychological interventions in OCD
2023, Annales Medico-Psychologiques
L’objectif de cet article est de présenter en langue française une revue des connaissances actuelles sur les conséquences et déterminants de l’accommodation familiale. Celle-ci peut se définir par les changements de comportements qu’adoptent les membres d’une famille d’un proche souffrant de trouble mental dans le but de diminuer la souffrance et la détresse qui y sont associées. Afin de présenter ce mécanisme, l’article en abordera les modèles théoriques sous-jacents dans le trouble obsessionnel compulsif (TOC). Une seconde partie traitera des principaux programmes et méthodes de prise en soin de l’accommodation familiale. Pour ce faire, une revue de la littérature concernant l’accommodation familiale a été réalisée à partir des bases de données suivantes : PubMed, Google Scholar, ScienceDirect et PsycINFO, cela sans limitation de date. Soixante-sept articles ont été retenus afin d’aborder la question de l’accommodation familiale dans les TOC, aussi bien auprès d’une population enfants que d’une population adultes. Il en résulte que les données de la littérature montrent clairement que l’accommodation familiale est (1) un facteur important de maintien de la symptomatologie TOC et anxieuse ; (2) négativement associée à l’efficacité des interventions psychothérapeutiques. En ce sens, de nombreuses propositions d’interventions, issues des modèles en TCC, ont vu le jour ces dernières années afin de maximiser l’efficacité des thérapies du TOC et des troubles anxieux. Pour conclure, mieux comprendre l’accommodation familiale et en tenir compte dans l’ensemble des pathologies psychiatriques paraît essentiel à l’avenir afin d’augmenter l’efficacité des propositions de soin.
The objective of this article is to present a review of current knowledge of the consequences and determinants of family accommodation in adults, children and adolescents. Family accommodation can be defined as the changes in behavior adopted by family members of a relative suffering from a mental disorder in order to reduce the associated suffering and distress (e.g., participating in OCD rituals or helping with avoidance). This phenomenon is particularly frequent since it is observed in from 70 to 97% of the relatives interviewed in the studies, whether the patients are adults or children. To present this mechanism, this article will discuss the underlying theoretical models in obsessive-compulsive disorder (OCD) as well as outline the epidemiology, consequences and maintaining factors of family accommodation. The second part of this article will deal with the principal programs and methods of treatment of family accommodation. To this end, a review of the literature regarding family accommodation was conducted using the following databases: PubMed, Google Scholar, ScienceDirect, and PsycINFO, without date limitation. Sixty-seven articles were selected to explore the question of family accommodation in OCD, both in child and adult populations. The data in the literature clearly show that family accommodation is an important factor in the perpetuation of OCD and anxiety symptomatology. Indeed, this accommodation would seem to impede attempts to learn new functional behavior by not allowing the person to perceive the negative consequences of his or her symptomatic behavior or by preventing him or her from experiencing habituation to anxiety-provoking stimuli. In addition, several studies have shown a moderate correlation between the intensity of OCD and family accommodation, as well as the negative effects on the quality of the relationship in couples, or an increase in the perceived burden for the relative. Another finding that seems relevant to clinical practice is that family accommodation is negatively associated with the effectiveness of psychotherapeutic interventions. Indeed, it has been shown that a high level of family accommodation is positively correlated with a low response to psychotherapeutic and pharmacological treatments. Family accommodation has been shown to be a factor in the failure of psychotherapies by distorting the learning achieved in therapy, as well as by leading to greater functional deterioration in the patient. This accommodation is also a predictor of non-spontaneous recovery. These data, therefore, indicate the importance of considering this mechanism in the treatment of patients suffering from OCD, regardless of their age or sex. In the second part of the article, we discuss many proposals for interventions, based on CBT models, which have emerged in recent years in order to maximize the effectiveness of therapies for OCD and anxiety disorders. Their aim is to integrate the family member into the therapy so that he or she can understand the interest in changing his or her reinforcing behavior. In addition to understanding the importance of change, they can be helped by the therapist. Most of these programs are for children only, but some do exist for relatives of adult patients. These propositions for the treatment of family accommodation seem to demonstrate interesting evidence in favor of their effectiveness. However, considering the small number of existing programs, and the small sample sizes that have led to their validation, further research is needed on this topic in order to highlight key interventions that can lead to a decrease in family accommodation. In conclusion, despite an acceleration of research during the last decade, family accommodation remains relatively insufficiently studied, particularly in adults. Recently, family accommodation has been demonstrated in cases of depression, all anxiety disorders, autism spectrum disorders, eating disorders and in chronic pain. There is still a lack of evidence for the existence of this process in certain disorders such as schizophrenia or bipolarity, but it is easy to hypothesize that a change in behavior can be found in the relatives of people suffering from these types of pathologies. In consideration of these results and of the negative impact of family accommodation on the treatment of mental pathologies, a better understanding of family accommodation and its consideration in all psychiatric pathologies seems essential in the future in order to increase the effectiveness of treatment proposals.
Childhood Obsessive–Compulsive Disorder
2023, Psychiatric Clinics of North America
Citation Excerpt :
Likewise, the majority of parents of youth with OCD endorse home and family problems related to their child’s condition.61,65 This may involve disruptions to family routines and relationships, with negative effects even extending into parents’ occupational lives.66 Families of children with OCD report more strain and stress, parental guilt and fear, and parental anxiety.67,68
A systematic review of sleep problems in children and adolescents with obsessive compulsive disorder
2022, Journal of Anxiety Disorders
Citation Excerpt :
This was also one of two studies to measure youth bedtimes, finding no difference in bedtimes between children with OCD compared to controls. This result contrasts with previous evidence that bedtime routines are an area of family functioning commonly disrupted by OCD symptoms (Stewart et al., 2017). Methodological differences may account for this inconsistency.
There is growing interest in the relationship between obsessive-compulsive disorder (OCD) and sleep problems in youth, including the development of a theoretical model proposing how these disorders maintain each other. The model suggests that OCD symptoms are proposed to interfere with sleep duration (e.g., via increased arousal and delayed bedtime), which compounds OCD symptom severity during the daytime and into the evening, feeding back into the model. Whether the recent influx of research on sleep problems in youth with OCD supports this model is unknown. The primary aim of this systematic review was to characterize sleep problems in youth with OCD and evaluate whether current research supports previous theoretical inferences. Findings across 20 studies revealed a high prevalence of sleep problems among youth with OCD and support a bidirectional relationship. Studies largely did not assess hypothesized relationships proposed by the model; support for the model is therefore preliminary. A secondary aim was to assess the impacts of comorbidity and developmental stage. Findings suggest that in childhood, comorbid anxiety disorders may initially predate sleep problems, but they become mutually maintained over time; the role of comorbid depression appears to increase with age. Limitations, future directions, and clinical implications are discussed.
Determinants of family functioning in caregivers of persons with obsessive-compulsive disorder
2022, Journal of Affective Disorders
Obsessive-compulsive disorder (OCD) is known to cause significant burden to patients and their caregivers. However, there is limited data on its impact on family functioning, especially from families with an adult member having OCD.
Four hundred subjects, which included treatment-seeking adult OCD patients (n = 200) and their caregivers (n = 200) were recruited. Patients were evaluated using the Mini International Neuropsychiatric Interview (MINI) and the Yale-Brown Obsessive-Compulsive Scale (YBOCS). Caregivers were evaluated using the MINI, the Caregiver Strain Index (CSI), the Hamilton Anxiety Rating Scale (HAM-A), the Hamilton Depression Rating Scale (HAM-D), the Socio-Occupational Functioning Assessment Scale (SOFAS), the Family Accommodation Scale (FAS) and the Connor-David Resilience scale (CD-RISC) in a cross-sectional interview. Family functioning was measured using the OCD Family Functioning (OFF) Scale. Structural equation modeling (SEM) was carried out to evaluate the relationships between the patient and caregiver variables to predict family functioning.
From the best-fitting path model, we ascertained that OCD symptoms did not have a direct relationship with family dysfunction. Their effects were in turn was mediated by family accommodation, anxiety, caregiver stress/burden and depression. “Contamination & washing” was the only significant symptom dimension within the model. Caregiver resilience was found to predict only their individual functioning, and not family functioning.
Study sample included patients from a tertiary care OCD service, only one caregiver from each patient's family was interviewed.
Evaluating family functioning, addressing it as part of interventional modules for patients and caregivers may help improving treatment outcomes.
Pediatric Obsessive-Compulsive Disorder
2022, Comprehensive Clinical Psychology, Second Edition
The goal of this article is to review the presentation and treatment of obsessive-compulsive disorder (OCD) during childhood and adolescence. After describing the diagnosis and presentation of OCD, developmental features that often differentiate children from adults will be reviewed, including insight, developmental subtypes, co-occurring disorders, parental accommodation of symptoms, and parent-child conflict. The article will then present a summary of assessments and treatments for OCD, with a particular emphasis on cognitive-behavioral therapy with exposure and response prevention. The article will focus on recent advances in pediatric OCD treatment, concluding with a discussion of potential future directions for the field.
Longitudinal trajectory and predictors of change in family accommodation during exposure therapy for pediatric OCD
2021, Journal of Anxiety Disorders
Family accommodation (FA) is key in the maintenance of OCD. However, most studies are cross-sectional, and have not identified long-term trajectories and correlates of FA changes over treatment. This study investigated changes in clinician-rated FA over 10 sessions of cognitive behavioral therapy (CBT) for 142 children with OCD, as well as several key predictors/correlates: (a) clinician-rated OCD symptom severity, (b) child- and parent-rated functional impairment, (c) parent-rated treatment expectancies, and (d) child- and parent-rated therapeutic alliance. Multi-level models indicated that FA changed significantly during treatment, with gains maintained over 6-months. Baseline clinician-rated OCD severity did not predict changes in FA. Significant interactions indicated that children with higher child- and parent-rated impairment exhibited greater FA improvements over treatment (versus children with lower impairment). Child- and parent-rated therapeutic alliance and parent-rated expectancies did not predict FA changes. Finally, FA mediated the relationship between OCD severity and parent- (but not child-) rated impairment. Reverse mediation models were also significant. Findings indicate that CBT can successfully reduce FA (a) even if children experience high OCD severity and interference in school, relationships, and family life, and (b) regardless of non-specific factors like treatment expectancies and alliance. FA reductions are an important mechanism mediating treatment response.

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: This article is discussed in an editorial by Dr. Eli R. Lebowitz on page 187.

: Clinical guidance is available at the end of this article.

: This work was supported by funding from the Michael Smith Foundation for Health Research and the Canadian Institutes for Health Research awarded to Dr. Stewart and funding from the National Institute of Mental Health awarded to Dr. Pauls.

: Dr. Pauls served as the statistical expert for this research.

: The authors acknowledge the OCD Collaborative Genetics Association Study and the principal investigator, Gerry Nestadt, MBBCh, MPH, from the main Johns Hopkins site in addition to the McLean OCD Institute and all of the families who participated to make this work possible.

: Disclosure: Dr. Stewart serves on the Scientific and Clinical Advisory Board of the International OCD Foundation and served as a Medical Advisory Board Member of the Tourette Association of America from 2012 through 2016. Dr. Geller has received grant or research support from the National Institute of Mental Health, Pfizer, Eli Lilly and Co., GlaxoSmithKline, Otsuka, Forest, Shire, and Neurocrine. He has received honoraria from the American Academy of Child and Adolescent Psychiatry and the Massachusetts General Hospital Psychiatry Academy. He has served on the speakers’ bureau of Eli Lilly and Co. Drs. Hu, Leung, and Pauls and Mss. Chan, Hezel, Lin, Belschner, and Walsh report no biomedical financial interests or potential conflicts of interest.

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New researchA Multisite Study of Family Functioning Impairment in Pediatric Obsessive-Compulsive Disorder

Objective

Method

Results

Conclusion

Section snippets

Participants

Descriptive Data

Discussion

Psychiatry Res

J Am Acad Child Adolesc Psychiatry

Behav Res Ther

J Am Acad Child Adolesc Psychiatry

Behav Ther

Behav Res Ther

J Am Acad Child Adolesc Psychiatry

J Anxiety Disord

J Am Acad Child Adolesc Psychiatry

J Obsessive Compuls Relat Disord

J Am Acad Child Adolesc Psychiatry

J Am Acad Child Adolesc Psychiatry

Global Burden of Obsessive-Compulsive Disorder in the Year 2000

Family accommodation in obsessive-compulsive disorder

Am J Psychiatry

Obsessive-compulsive disorder: effects on family members

Am J Orthopsychiatry

Decreased family accommodation associated with improved therapy outcome in pediatric obsessive-compulsive disorder

J Consult Clin Psychol

The role of the family in childhood obsessive-compulsive disorder

Clin Child Fam Psychol Rev

Predictors of family accommodation in obsessive-compulsive disorder

Ann Clin Psychiatry

Family accommodation in pediatric obsessive-compulsive disorder

J Clin Child Adolesc Psychol

Family-based treatment of early-onset obsessive-compulsive disorder

J Child Adolesc Psychopharmacol

The impact of family on obsessive compulsive disorder in children and adolescents: development, maintenance, and family psychological treatment

J Adv Psychol

New research
A Multisite Study of Family Functioning Impairment in Pediatric Obsessive-Compulsive Disorder