title: Family perspectives about Down syndrome.
abstract: National medical organizations recommend that during prenatal counseling sessions, healthcare providers discuss how having a child with Down syndrome (DS) might impact the family unit. Few studies, to date, have surveyed families about their life experiences. For this investigation, we examined 41 family attitudes, which were obtained from mailed questionnaires completed by 1,961 parents/guardians, 761 brothers/sisters, and 283 people with DS who were members of six DS non-profit organizations, chosen for their size, ethnic/racial diversities, and geographic distribution throughout the United States. About 83% of families reported to all being proud of the family member with DS, and 87% reported to all feeling love for the member with DS. Younger siblings (ages 9-11) were more likely to feel embarrassed by their sibling with DS if their parents/guardians also did. If one or more parents/guardians felt that their children without DS did have a good relationship with their child with DS, siblings were more likely to report that they loved and liked their brother/sister with DS. Overall, our data demonstrate that positive themes tend to dominate within modern-day families who have members with DS, although challenges were not insignificant for some.
authors.affiliation: Division of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.|Harvard Medical School, Boston, Massachusetts.
authors.forename: Brian G
authors.initials: BG
authors.lastname: Skotko
authors.affiliation: Family Resource Associates, Inc., Shrewsbury, New Jersey.
authors.forename: Susan P
authors.initials: SP
authors.lastname: Levine
authors.affiliation: Harvard Medical School, Boston, Massachusetts.|Biostatistics Center, Massachusetts General Hospital, Boston, Massachusetts.
authors.forename: Eric A
authors.initials: EA
authors.lastname: Macklin
authors.affiliation: Harvard Medical School, Boston, Massachusetts.|Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts.
authors.forename: Richard D
authors.initials: RD
authors.lastname: Goldstein
mesh_terms: D000293:Adolescent; D002648:Child; D004314:Down Syndrome / Q000453:epidemiology* / Q000523:psychology; D004644:Emotions; D005190:Family; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D016017:Odds Ratio; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: abortion; family attitudes; noninvasive prenatal screens; prenatal tests; quality of life; trisomy 21