Family experiences associated with a child's diagnosis of fragile X or down syndrome

Evidence for disruption and resilience

Julie Poehlmann, Melissa Clements, Leonard J Abbeduto, Venous Farsad

Research output: Contribution to journalArticle

66 Citations (Scopus)

Abstract

Although previous findings have shown that parents react intensely to the initial diagnosis of their child's disability, studies focused on long-term outcomes and adjustment are needed. We interviewed 21 mothers whose adolescent or young adult was diagnosed with Down syndrome or fragile X syndrome. Qualitative analysis of data focused on the diagnostic process and the child's development revealed emergent themes: importance of context, variations in emotional reactions to the diagnosis, use of specific coping strategies, and changes in family adaptation over time. Results indicate most families experienced elements of disruption and resilience in their reactions to the diagnosis, although different patterns emerged for each syndrome group. Maternal descriptions highlighted positive attributes that contributed to family well-being and behavioral challenges that were a source of family stress.

Original languageEnglish (US)
Pages (from-to)255-267
Number of pages13
JournalMental Retardation
Volume43
Issue number4
DOIs
StatePublished - Aug 2005
Externally publishedYes

Fingerprint

Fragile X Syndrome
Down Syndrome
resilience
evidence
experience
Mothers
Social Adjustment
disability studies
Child Development
young adult
Young Adult
diagnostic
coping
parents
Parents
well-being
adolescent
Group

ASJC Scopus subject areas

  • Rehabilitation
  • Health Professions(all)
  • Education

Cite this

Family experiences associated with a child's diagnosis of fragile X or down syndrome : Evidence for disruption and resilience. / Poehlmann, Julie; Clements, Melissa; Abbeduto, Leonard J; Farsad, Venous.

In: Mental Retardation, Vol. 43, No. 4, 08.2005, p. 255-267.

Research output: Contribution to journalArticle

@article{b52f56f9074145dd8a1a1d2f8cf6c623,
title = "Family experiences associated with a child's diagnosis of fragile X or down syndrome: Evidence for disruption and resilience",
abstract = "Although previous findings have shown that parents react intensely to the initial diagnosis of their child's disability, studies focused on long-term outcomes and adjustment are needed. We interviewed 21 mothers whose adolescent or young adult was diagnosed with Down syndrome or fragile X syndrome. Qualitative analysis of data focused on the diagnostic process and the child's development revealed emergent themes: importance of context, variations in emotional reactions to the diagnosis, use of specific coping strategies, and changes in family adaptation over time. Results indicate most families experienced elements of disruption and resilience in their reactions to the diagnosis, although different patterns emerged for each syndrome group. Maternal descriptions highlighted positive attributes that contributed to family well-being and behavioral challenges that were a source of family stress.",
author = "Julie Poehlmann and Melissa Clements and Abbeduto, {Leonard J} and Venous Farsad",
year = "2005",
month = "8",
doi = "10.1352/0047-6765(2005)43[255:FEAWAC]2.0.CO;2",
language = "English (US)",
volume = "43",
pages = "255--267",
journal = "Intellectual and Developmental Disabilities",
issn = "1934-9491",
publisher = "American Association on Intellectual and Developmental Disabilities",
number = "4",

}

TY - JOUR

T1 - Family experiences associated with a child's diagnosis of fragile X or down syndrome

T2 - Evidence for disruption and resilience

AU - Poehlmann, Julie

AU - Clements, Melissa

AU - Abbeduto, Leonard J

AU - Farsad, Venous

PY - 2005/8

Y1 - 2005/8

N2 - Although previous findings have shown that parents react intensely to the initial diagnosis of their child's disability, studies focused on long-term outcomes and adjustment are needed. We interviewed 21 mothers whose adolescent or young adult was diagnosed with Down syndrome or fragile X syndrome. Qualitative analysis of data focused on the diagnostic process and the child's development revealed emergent themes: importance of context, variations in emotional reactions to the diagnosis, use of specific coping strategies, and changes in family adaptation over time. Results indicate most families experienced elements of disruption and resilience in their reactions to the diagnosis, although different patterns emerged for each syndrome group. Maternal descriptions highlighted positive attributes that contributed to family well-being and behavioral challenges that were a source of family stress.

AB - Although previous findings have shown that parents react intensely to the initial diagnosis of their child's disability, studies focused on long-term outcomes and adjustment are needed. We interviewed 21 mothers whose adolescent or young adult was diagnosed with Down syndrome or fragile X syndrome. Qualitative analysis of data focused on the diagnostic process and the child's development revealed emergent themes: importance of context, variations in emotional reactions to the diagnosis, use of specific coping strategies, and changes in family adaptation over time. Results indicate most families experienced elements of disruption and resilience in their reactions to the diagnosis, although different patterns emerged for each syndrome group. Maternal descriptions highlighted positive attributes that contributed to family well-being and behavioral challenges that were a source of family stress.

UR - http://www.scopus.com/inward/record.url?scp=24744458436&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=24744458436&partnerID=8YFLogxK

U2 - 10.1352/0047-6765(2005)43[255:FEAWAC]2.0.CO;2

DO - 10.1352/0047-6765(2005)43[255:FEAWAC]2.0.CO;2

M3 - Article

VL - 43

SP - 255

EP - 267

JO - Intellectual and Developmental Disabilities

JF - Intellectual and Developmental Disabilities

SN - 1934-9491

IS - 4

ER -