Cinderella and the Prince: Mental Retardation and Community Psychiatry

Tarján, George

doi:10.1176/ajp.122.9.1057

Cited by 13 publications

(4 citation statements)

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“…The comorbidity of neurologic and physical diseases could discourage psychiatrists in accepting referrals of TSC patients, further contributing to the knowledge gap with regard to TAND. This interpretation is in line with the historical treatment gap in psychiatry for patients with intellectual disability, which is also common in TSC patients [ 20 ]. The combination of these factors may account for the low involvement of psychiatrists in the care of TSC patients.…”

Section: Discussionsupporting

confidence: 74%

Involvement of mental health professionals in the treatment of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey

Waltereit

d’Augères²,

Jančić

et al. 2021

Orphanet J Rare Dis

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Background Tuberous sclerosis complex (TSC) is a rare, genetic, multisystem disorder characterized by the growth of hamartomas in several organs, including the brain, kidneys, heart, eyes, and lungs. Even though over 90% of patients will have some form of TSC-associated neuropsychiatric disorder (TAND), there is an apparent lack of involvement of mental health professionals (MHPs) in the care of patients with TSC. The aim of this study was to determine the current level of TAND awareness in the TSC community and to identify possible barriers to effective multidisciplinary collaboration between MHPs and other healthcare providers (HCPs) in TAND management. Methods An electronic survey on current TSC and TAND management was conducted, targeting TSC caregivers/families, psychiatrists, neurologists, TSC specialists, and primary care physicians. Results The invitation to participate in the survey was emailed to 659 HCPs and was disseminated through social media channels of patient advocacy groups. The survey was open for 4 months, with 359 responses collected. The majority of participants were TSC caregivers/families (73.3% of all responses). Of the 96 HCPs who participated, most were neurologists (61.5%) or TSC specialists (28.1%). Only 6 psychiatrists and 4 primary care physicians participated. Approximately half of patients have never had a neuropsychiatric assessment, and it was their caregivers/families who initiated the discussion of TAND with their providers. Almost 70% of TSC caregivers/families believed that psychiatric treatment could improve their quality of life. However, 54% of patients had difficulty obtaining psychiatric assessment. In turn, only 21% of HCPs believed that psychiatric therapy would help and 74% were concerned that their patients would be stigmatized by psychiatric referral. Conclusions This study focused on European healthcare systems suggests that current care for mental health issues in patients with TSC is inadequate, despite guideline recommendations for regular neuropsychiatric assessments. This appears to be due to a combination of gaps in diagnosis and surveillance, low frequency of psychiatric referrals, insufficient resources, and stigmatization of mental healthcare. There is a pressing need for further initiatives to study and address the mechanisms underlying the mental health treatment gap. The importance of MHP support must be recognized to optimize TSC management.

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Section: Discussionsupporting

confidence: 74%

Involvement of mental health professionals in the treatment of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey

Waltereit

d’Augères²,

Jančić

et al. 2021

Orphanet J Rare Dis

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“…But not to single out positive psychologists, this segment of the population is simply not on the radar screen of most researchers in mainstream psychology, positive or otherwise. From the 1920s to today, mental retardation has been cast as the unwanted stepsister, an as-yet-undiscovered Cinderella to more glitzy specialities in psychology, psychiatry, and child development (King, State, Shah, Davanzo, & Dykens, 1997; Potter, 1927; Tarjan, 1966).…”

Section: Bridging Mental Retardation and Positive Psychologymentioning

confidence: 99%

Toward a positive psychology of mental retardation.

Dykens¹

2006

American Journal of Orthopsychiatry

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Researchers and practitioners alike have long focused on the external life conditions, adaptive behavior, and inclusion of persons with mental retardation. Using breakthroughs in positive psychology, this article proposes a new research agenda focused on the positive, internal states of those with mental retardation. It shows how major movements in the mental retardation field--quality of life, dual diagnosis, personality motivation, and families--have succeeded in some arenas but failed to address happiness and well-being. Examples of happiness--of positive emotions, flow, strengths, and virtues--are offered in people with genetic causes of mental retardation. Complexities related to etiology, measurement, flow, and a meaningful life are described, as is the vital role that mental retardation can play in the emerging science of positive psychology.

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“…In addition, research in intellectual disabilities generally occupied a lower status in the hierarchy of topics examined in child psychiatry. Tizard (1966) notes that, ‘on the whole it has not been a fashionable field for research’ (p. 8) and various researchers – over an 80‐year span – have invoked the Cinderella metaphor to suggest that the field would shortly take its rightful place at the mental health ball (Potter, 1927; Tarjan, 1966; King, State, Shah, Davanzo, & Dykens, 1997).…”

Section: Intellectual Disabilities and Jccp: The First 50 Yearsmentioning

confidence: 99%

Intellectual disabilities and child psychiatry: looking to the future

Hodapp

Dykens

2009

Child Psychology Psychiatry

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We begin this article by examining the role of intellectual disabilities within child psychiatry, highlighting the relatively steady role of disabilities and the recent movement to examine behavior in specific genetic syndromes. We next propose five questions for future work. Questions relate to (1) specifying the nature of gene-brain-behavior connections; (2) delineating environmental effects and gene-environment interactions; (3) understanding behaviors, physical characteristics, health issues, and other personal characteristics by which children with intellectual disabilities influence others; (4) clarifying the roles of gender and aging in behavioral functioning; and (5) working to improve pharmacological, educational, and other interventions and supports for children and their families. Although great advances have occurred over the past 50 years, intellectual disability research lags behind other areas of child psychiatry; much remains to be discovered that might help these children.

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Cinderella and the Prince: Mental Retardation and Community Psychiatry

Cited by 13 publications

References 0 publications

Involvement of mental health professionals in the treatment of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey

Involvement of mental health professionals in the treatment of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey

Toward a positive psychology of mental retardation.

Intellectual disabilities and child psychiatry: looking to the future

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