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 language | English (US) |
|---|---|
| Pages (from-to) | 255-267 |
| Number of pages | 13 |
| Journal | Mental Retardation |
| Volume | 43 |
| Issue number | 4 |
| DOIs | |
| State | Published - Aug 2005 |
| Externally published | Yes |
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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 journal › Article
}
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.
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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 -