'We've been through it all together': supports for parents with children with rare trisomy conditions.
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.


METHODS
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.
Southern Illinois University Carbondale, Carbondale, IL, USA. dabruns@siu.edu
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D
Bruns
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Foerster
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002668:Child Rearing / Q000523:psychology; D002675:Child, Preschool; D016208:Databases, Factual; D002658:Developmental Disabilities / Q000451:nursing / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D035583:Rare Diseases / Q000451:nursing* / Q000523:psychology; D012944:Social Support; D014314:Trisomy; D055815:Young Adult