Literature DB >> 24450320

Modeling family adaptation to fragile X syndrome.

Melissa Raspa, Donald B Bailey, Carla Bann, Ellen Bishop.   

Abstract

Using data from a survey of 1,099 families who have a child with Fragile X syndrome, we examined adaptation across 7 dimensions of family life: parenting knowledge, social support, social life, financial impact, well-being, quality of life, and overall impact. Results illustrate that although families report a high quality of life, they struggle with areas such as social support, social life, and parenting knowledge. Path analysis revealed that child and family factors play a role in adaptation, but family resources and social supports moderated their effect on quality of life, well-being, and overall impact. The interrelationship among multiple aspects of family life should be examined to improve family resiliency.

Entities:  

Mesh:

Year:  2014        PMID: 24450320     DOI: 10.1352/1944-7558-119.1.33

Source DB:  PubMed          Journal:  Am J Intellect Dev Disabil        ISSN: 1944-7558


  10 in total

1.  Merging Policy Initiatives and Developmental Perspectives in Early Intervention.

Authors:  Michael J Guralnick
Journal:  Escr Psicol       Date:  2015-08-31

Review 2.  The Likely Impact of Congenital Zika Syndrome on Families: Considerations for Family Supports and Services.

Authors:  Donald B Bailey; Liana O Ventura
Journal:  Pediatrics       Date:  2018-02       Impact factor: 7.124

Review 3.  Implications of the FMR1 Premutation for Children, Adolescents, Adults, and Their Families.

Authors:  Anne Wheeler; Melissa Raspa; Randi Hagerman; Marsha Mailick; Catharine Riley
Journal:  Pediatrics       Date:  2017-06       Impact factor: 7.124

4.  The Future of Fragile X Syndrome: CDC Stakeholder Meeting Summary.

Authors:  Catharine Riley; Marsha Mailick; Elizabeth Berry-Kravis; Julie Bolen
Journal:  Pediatrics       Date:  2017-06       Impact factor: 7.124

Review 5.  Variables related to the quality of life of families that have a child with severe to profound intellectual disabilities: A systematic review.

Authors:  N Luitwieler; J Luijkx; M Salavati; C P Van der Schans; A J Van der Putten; A Waninge
Journal:  Heliyon       Date:  2021-06-24

6.  Mobile technology use and skills among individuals with fragile X syndrome: implications for healthcare decision making.

Authors:  M Raspa; T Fitzgerald; R D Furberg; A Wylie; R Moultrie; M DeRamus; A C Wheeler; L McCormack
Journal:  J Intellect Disabil Res       Date:  2018-08-13

7.  Maternal Pragmatic Language Difficulties in the FMR1 Premutation and the Broad Autism Phenotype: Associations with Individual and Family Outcomes.

Authors:  Jessica Klusek; Angela John Thurman; Leonard Abbeduto
Journal:  J Autism Dev Disord       Date:  2021-04-04

8.  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

9.  Mindfulness and Acceptance as Potential Protective Factors for Mothers of Children With Fragile X Syndrome.

Authors:  Anne C Wheeler; Shari Miller; Amanda Wylie; Anne Edwards
Journal:  Front Public Health       Date:  2018-11-06

10.  Telehealth-enabled behavioral treatment for problem behaviors in boys with fragile X syndrome: a randomized controlled trial.

Authors:  Scott S Hall; Katerina D Monlux; Arlette Bujanda Rodriguez; Booil Jo; Joy S Pollard
Journal:  J Neurodev Disord       Date:  2020-11-20       Impact factor: 4.025

  10 in total

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