Obsessive‐Compulsive Disorder: The Process of Parental Adaptation and Implications for Genetic Counseling

Abstract

Obsessive-compulsive disorder (OCD) has primarily pediatric onset and well-documented unique impacts on family functioning. Limited research has assessed the understanding that parents of children with OCD have of the etiology of the condition, and there are no data regarding potential applications of genetic counseling for this population. We recruited 13 parents of 13 children diagnosed with OCD from the OCD Registry at British Columbia Children's Hospital, and conducted qualitative semi-structured telephone interviews to explore participants' experiences with their child's OCD, causal attributions of OCD, and perceptions of two genetic counseling vignettes. Interviews were audio-recorded, transcribed, and analyzed using elements of grounded theory qualitative methodology. Analysis revealed key components and contextual elements of the process through which parents adapt to their child's OCD. This adaptation process involved conceptualizing the meaning of OCD, navigating its impact on family dynamics, and developing effective illness management strategies. Adaptation took place against a backdrop of stigmatization and was shaped by participants' family history of mental illness and their child's specific manifestations of OCD. Parents perceived genetic counseling, as described in the vignettes, as being empowering, alleviating guilt and blame, and positively impacting treatment orientation. These data provide insight into the process of parental adaptation to pediatric OCD, and suggest that genetic counseling services for families affected by OCD may help facilitate adaptation to this illness.

Attitudes toward offering genetic counseling for psychiatric conditions among genetics healthcare practitioners in the United Kingdom: A qualitative study

“…Research has shown that members of families affected with psychiatric illnesses such as schizophrenia, bipolar disorder and obsessive-compulsive disorder are in favor of having access to PGC (Andrighetti et al, 2016;DeLisi & Bertisch, 2005;Martorell et al, 2019;Peay et al, 2009). Furthermore, there is evidence that those who have accessed this intervention have gained important benefits.…”

Perceptions of genetic risk, testing, and counseling among individuals with eating disorders

“…To test the hypotheses (see purpose section), first, participants were asked to use a visual analog scale to indicate how guilty, ashamed, stigmatized, looked down upon, and differently treated they felt as a result of having an eating disorder. Then, each participant was presented with two vignettes (adapted from Andrighetti et al, 2016; see Box 1) that depicted two different elements of genetic counseling—specifically, counseling around eating disorder etiology (a fundamental component of the genetic counseling encounter, Vignette 1), and counseling around risks for recurrence and risk reduction strategies (an important component of genetic counseling that is provided for specific patients as indicated, Vignette 2). All participants read the vignettes in the same order (an order that reflects the sequence in which these topics would be addressed clinically), and after reading both, were presented a visual analog scale (identical to the one they completed prior to reading the vignettes) and asked to imagine that they had participated in the interaction with a genetic counselor as described in the vignettes, and to move each slider to reflect how they would feel now about having an eating disorder.…”

“…Genetic counseling for psychiatric disorders has been shown to have positive outcomes (Austin & Honer, 2008; Hippman et al, 2016; Inglis, Koehn, McGillivray, Stewart, & Austin, 2015; Moldovan, Pintea, & Austin, 2017; Semaka & Austin, 2019) but is still an underutilized service (Hunter, Hippman, Honer, & Austin, 2010; Moldovan et al, 2019). To shed light on potential explanations for this, previous studies have explored interest in genetic counseling among other populations impacted by mental illnesses (Andrighetti et al, 2016; Austin & Honer, 2008; Austin, Smith, & Honer, 2006; DeLisi & Bertisch, 2006; Erickson et al, 2014; Kalb, Vincent, Herzog, & Austin, 2017; Lyus, 2007; Meiser et al, 2008; Meiser, Mitchell, McGirr, Van Herten, & Schofield, 2005; Quaid, Aschen, Smiley, & Nurnberger, 2001; Quinn et al, 2014; Wilhelm et al, 2009), but none have looked specifically at attitudes of individuals with eating disorders.…”

Challenges in the diagnosis and treatment of pediatric obsessive–compulsive disorder

“…A recent report suggests a potential role for genetic counseling as part of the psychoeducation process, with positive impacts on parental treatment orientation. [110] Families can be referred to online resources such as the Pediatric International OCD Foundation website at http://kids.iocdf.org.…”