“Nothing is Absolute in Life”: Understanding Uncertainty in the Context of Psychiatric Genetic Counseling from the Perspective of those with Serious Mental Illness

Hippman, Catriona; Lohn, Zoe; Ringrose, Andrea; Inglis, Angela; Cheek, Joanna; Austin, Jehannine

doi:10.1007/s10897-013-9594-2

Cited by 38 publications

(34 citation statements)

References 38 publications

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“…These outcomes have been reported by previous studies into the provision of genetic counselling for mental health in Canada (Austin and Honer 2007; Austin and Honer 2008: Hippman et al 2013). Recently, Inglis et al (2015) utilized the Genetic Counselling Outcome Scale (GCOS) (McAllister et al 2011) to assess specialist genetic counselling provision, with individuals and their family members reporting a significant increase in feelings of empowerment one month post genetic counselling.…”

Section: Discussionsupporting

confidence: 79%

“…Studies have highlighted the benefits of providing education about aetiology (DeLisi and Bertisch 2006; Austin and Honer 2008) for affected individuals and their families by improving knowledge, alleviating anxiety and reducing uncertainty of risk for those with a heightened fear of developing a mental illness (Phillips et al 2002; Austin and Honer 2007; Hippman et al 2013). For instance, Rusch et al (2010) emphasize the importance of discussing causes holistically, where understanding genetic and environmental aspects of psychiatric illness is likely to reduce guilt and self-blame.…”

Section: Introductionmentioning

confidence: 99%

“…As large-scale genomics continue to unveil the ‘genetic architecture’ of psychiatric disorders (Gratten et al 2014), it may become necessary to incorporate forms of psychotherapeutic intervention to accommodate genetic and non-genetic understandings of mental illness. In general, the literature expresses the need for more integration between developments in genetic research and clinical practice.…”

Section: Introductionmentioning

confidence: 99%

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Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom

Jenkins

Arribas-Ayllon

2016

Journal of Genetic Counseling

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Genetic counselling is not routinely offered for psychiatric disorders in the United Kingdom through NHS regional clinical genetics departments. However, recent genomic advances, confirming a genetic contribution to mental illness, are anticipated to increase demand for psychiatric genetic counselling. This is the first study of its kind to employ qualitative methods of research to explore accounts of psychiatric health professionals regarding the prospects for genetic counselling services within clinical psychiatry in the UK. Data were collected from 32 questionnaire participants, and 9 subsequent interviewees. Data analysis revealed that although participants had not encountered patients explicitly demanding psychiatric genetic counselling, psychiatric health professionals believe that such a service would be useful and desirable. Genomic advances may have significant implications for genetic counselling in clinical psychiatry even if these discoveries do not lead to genetic testing. Psychiatric health professionals describe clinical genetics as a skilled profession capable of combining complex risk communication with much needed psychosocial support. However, participants noted barriers to the implementation of psychiatric genetic counselling services including, but not limited to, the complexities of uncertainty in psychiatric diagnoses, patient engagement and ethical concerns regarding limited capacity.

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Section: Discussionsupporting

confidence: 79%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom

Jenkins

Arribas-Ayllon

2016

Journal of Genetic Counseling

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“…However, from the perspective of patients with psychiatric disorders, the uncertainty associated with psychiatric genetic counseling does not significantly detract from its value. In a survey of individuals with a diagnosed psychiatric disorder who received psychiatric genetic counseling, 52% reported that they had expected the uncertainty (Hippman et al, ).…”

Section: Discussionmentioning

confidence: 99%

Genetic counselors’ attitudes toward and practice related to psychiatric genetic counseling

Booke

Austin

Calderwood

et al. 2019

Journal of Genetic Counseling

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Despite the high demand for psychiatric genetic counseling among people with psychiatric conditions (>90%), surveys show that genetic counselors rarely receive primary referrals for psychiatric cases. The purpose of this study was to further investigate potential barriers to the provision of psychiatric genetic counseling services, focusing specifically on the prevalence and impact of psychiatric stigmatization among genetic counselors. Board‐certified, practicing genetic counselors were invited to participate in an anonymous survey via the National Society of Genetic Counselors. Survey measures included a validated psychiatric stigmatization scale (OMS‐HC) and questions assaying genetic counselors’ experiences with and opinions of psychiatric genetic counseling. Associations between psychiatric stigmatization and attitudes toward and practice related to psychiatric genetic counseling were computed using Pearson's correlation. The majority of respondents believed that psychiatric genetic counseling is of value to families (94%) and that it is indicated if there is a relevant personal or family history (90.3%), but only 44.6% reported providing this service. On average, respondents scored neutrally on psychiatric stigma scales; however, higher stigma levels were associated with less frequent psychiatric discussions (p = .05), less counselor comfort and perceived qualification (p = .003) and perceptions of having insufficient psychiatric genetic data (p < .02), resources (p < .02) and time (p < .03). This study suggests that the limits of psychiatric genetics research and unavailability of genetic testing lead many genetic counselors to doubt the utility of psychiatric genetic counseling. Should this mindset persist, without the intervention of psychiatric education and training, the field of genetic counseling risks continuing to inadequately serve a historically underserved population.

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“…Genetic counseling that refines clients’ understanding of BPD etiology and related family risk may help patients manage uncertainty [34] and worry, and facilitate coping and adaptation.…”

Section: Discussionmentioning

confidence: 99%

Adaptation to bipolar disorder and perceived risk to children: a survey of parents with bipolar disorder

2013

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BackgroundBipolar disorder (BPD) is a common condition associated with significant morbidity and reduced quality of life. In addition to challenges caused by their mood symptoms, parents affected with BPD harbor concerns about the mental health of their children. Among adult parents who perceive themselves to have BPD, this study aims to examine participants’ coping methods; identify predictors of adaptation; assess parental perceptions of risks for mood disorders among their children; and describe the relationships among illness appraisals, coping, adaptation to one’s own illness, and perceived risk to one’s children.MethodsParents who self-identified as having BPD completed a web-based survey that assessed dispositional optimism, coping, perceived illness severity, perceived etiology of BPD, perceived risk to offspring, and adaptation to BPD. Participants had at least one unaffected child who was 30 years of age or below.Results266 parents were included in the analysis. 87% of parents endorsed a “somewhat greater” or “much greater” risk for mood disorders in one’s child(ren) than someone without a family history. Endorsing a genetic/familial etiology to BPD was positively correlated with perceived risk for mood disorders in children (rs = .3, p < 0.01) and active coping with BDP (r = .2, p < 0.01). Increased active coping (β = 0.4, p < 0.001) and dispositional optimism (β = 0.3, p < 0.001) were positively associated with better adaptation, while using denial coping was negatively associated with adaptation (β = −0.3, p < 0.001). The variables explained 55.2% of the variance in adaptation (F = 73.2, p < 0.001). Coping mediated the effect of perceived illness severity on adaptation.ConclusionsThese data inform studies of interventions that extend beyond symptom management and aim to improve the psychological wellbeing of parents with BPD. Interventions targeted at illness perceptions and those aimed at enhancing coping should be studied for positive effects on adaptation. Parents with BPD may benefit from genetic counseling to promote active coping with their condition, and manage worry about perceived risk to their children.

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“Nothing is Absolute in Life”: Understanding Uncertainty in the Context of Psychiatric Genetic Counseling from the Perspective of those with Serious Mental Illness

Cited by 38 publications

References 38 publications

Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom

Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom

Genetic counselors’ attitudes toward and practice related to psychiatric genetic counseling

Adaptation to bipolar disorder and perceived risk to children: a survey of parents with bipolar disorder

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