Literature DB >> 22918667

Genetic disorders of intellectual disability: expanding our concepts of phenotypes and of family outcomes.

Robert M Hodapp1, Elisabeth M Dykens.   

Abstract

Over the past two decades, great strides have been made in our understandings of how genetic conditions influence behavior and how such so-called "behavioral phenotypes" influence parent and family stress and coping. In this paper, we call for expansions in two directions. First, as a field we need to go beyond behavior in our concepts of phenotypes, to also include the many medical, physical, and other "non-behavioral" phenotypes that influence children's everyday lives. Second, in examining how etiology-related phenotypes affect others, we need to go beyond the outcome of parental stress. In this regard, we focus on parental health, well-being, and various life choices, as well as how parenting children with specific genetic disorders can often lead to positive perceptions and outcomes. We end by discussing remaining research issues and how these two expansions relate to clinical practice.

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Year:  2012        PMID: 22918667     DOI: 10.1007/s10897-012-9536-4

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  37 in total

1.  Craniofacial maturity and perceived personality in children with Down syndrome.

Authors:  D J Fidler; R M Hodapp
Journal:  Am J Ment Retard       Date:  1999-09

2.  The neuropsychology of Down syndrome: evidence for hippocampal dysfunction.

Authors:  Bruce F Pennington; Jennifer Moon; Jamie Edgin; Jennifer Stedron; Lynn Nadel
Journal:  Child Dev       Date:  2003 Jan-Feb

3.  "You have to sit and explain it all, and explain yourself." Mothers' experiences of support services for their offspring with a rare genetic intellectual disability syndrome.

Authors:  Gemma Maria Griffith; Richard P Hastings; Susie Nash; Michael Petalas; Chris Oliver; Patricia Howlin; Joanna Moss; Jane Petty; Penelope Tunnicliffe
Journal:  J Genet Couns       Date:  2011-01-04       Impact factor: 2.537

4.  Families of children with Prader-Willi syndrome: stress-support and relations to child characteristics.

Authors:  R M Hodapp; E M Dykens; L L Masino
Journal:  J Autism Dev Disord       Date:  1997-02

5.  Subsequent births in families of children with disabilities: using demographic data to examine parents' reproductive patterns.

Authors:  Meghan M Burke; Richard C Urbano; Robert M Hodapp
Journal:  Am J Intellect Dev Disabil       Date:  2011-05

6.  Health among caregivers of children with health problems: findings from a Canadian population-based study.

Authors:  Jamie C Brehaut; Dafna E Kohen; Rochelle E Garner; Anton R Miller; Lucyna M Lach; Anne F Klassen; Peter L Rosenbaum
Journal:  Am J Public Health       Date:  2008-12-04       Impact factor: 9.308

Review 7.  Effectiveness of anticipatory guidance: recent developments.

Authors:  Catherine S Nelson; Lawrence S Wissow; Tina L Cheng
Journal:  Curr Opin Pediatr       Date:  2003-12       Impact factor: 2.856

8.  Family contexts, parental behaviour, and personality profiles of children and adolescents with Prader-Willi, fragile-X, or Williams syndrome.

Authors:  C F van Lieshout; R E De Meyer; L M Curfs; J P Fryns
Journal:  J Child Psychol Psychiatry       Date:  1998-07       Impact factor: 8.982

9.  Divorce in families of children with Down syndrome: a population-based study.

Authors:  Richard C Urbano; Robert M Hodapp
Journal:  Am J Ment Retard       Date:  2007-07

10.  Caring for mom and neglecting yourself? The health effects of caring for an elderly parent.

Authors:  Norma B Coe; Courtney Harold Van Houtven
Journal:  Health Econ       Date:  2009-09       Impact factor: 3.046

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  5 in total

1.  The Impact on the Family of Four Neurogenetic Syndromes: A Comparative Study of Parental Views.

Authors:  Colin Reilly; Lelia Murtagh; Joyce Senior
Journal:  J Genet Couns       Date:  2015-01-19       Impact factor: 2.537

2.  Adaptive behavior in infants and toddlers with Down syndrome and fragile X syndrome.

Authors:  Elizabeth A Will; Kelly E Caravella; Laura J Hahn; Deborah J Fidler; Jane E Roberts
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2018-02-05       Impact factor: 3.568

3.  Parental stress and adjustment in the context of rare genetic syndromes: A scoping review.

Authors:  Jacqueline Fitzgerald; Louise Gallagher
Journal:  J Intellect Disabil       Date:  2021-04-19

4.  Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.

Authors:  Anna Ridding; James Williams
Journal:  J Appl Res Intellect Disabil       Date:  2019-01-11

5.  Using Bayesian methodology to explore the profile of mental health and well-being in 646 mothers of children with 13 rare genetic syndromes in relation to mothers of children with autism.

Authors:  Dawn Adams; Richard P Hastings; Clair Alston-Knox; Rina Cianfaglione; Kate Eden; David Felce; Gemma Griffith; Jo Moss; Chris Stinton; Chris Oliver
Journal:  Orphanet J Rare Dis       Date:  2018-10-25       Impact factor: 4.123

  5 in total

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