ERIC Number: EJ929048
Record Type: Journal
Publication Date: 2011-Apr
Abstractor: As Provided
Reference Count: 45
"We've Been through It All Together": Supports for Parents with Children with Rare Trisomy Conditions
Bruns, D.; Foerster, K.
Journal of Intellectual Disability Research, v55 n4 p361-369 Apr 2011
Background: Parenting a child with a developmental disability can be a positive experience. A salient part of this outcome is support at the time of diagnosis and in an ongoing manner from immediate and extended family members. Studies are sparse on this topic for parents with a child with a rare trisomy condition. Method: The present study examined the support needs of parents with a child or adult with a rare trisomy condition (n = 20). Participants were recruited from the Tracking Rare Incidence Syndromes (TRIS) project. The TRIS Family, Friends and Finances Protocol was the data collection instrument. The protocol included primarily open-ended items. Qualitative analyses were conducted to identify themes from the protocol and follow-up phone contacts. Results: Support from immediate and extended family members varied from very positive to participants-describing very negative interactions with specific individuals. Many in the sample reported affirming experiences with spouses and difficulties with grandparents and other extended family members. Conclusions: Results both confirmed the literature and reflected the unique circumstances of the participants. It is critical to raise awareness of the similar and disparate support needs of this unique population, as the affected children are living longer and their families require continuing support to meet their and their children's needs.
Descriptors: Family (Sociological Unit), Developmental Disabilities, Clinical Diagnosis, Measurement Techniques, Qualitative Research, Social Support Groups, Parents, Child Rearing, Spouses, Grandparents, Consciousness Raising, Measures (Individuals)
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
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