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Deborah A. Bruns, Ph.D.Katie Foerster
SOFT ConferenceRoanoke, VA
July 24, 2009
The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness
and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved
decision making for optimal services and supports for affected children
and their families.(www.coehs.siu.edu/tris)
Principal Investigator’s experience with young children with full trisomy 18 in early 1990’s
Parent/family concerns on Tri-family and Tri-med lists including family needs, working with professionals & medical concerns
Advisory Committee and a planning group formed
TRIS was “born” in 2003; pilot data collected in 2005-06; online TRIS Survey launched 2/1/07
Literature describes specific perceptions of mothers (e.g., Warfield, Krauss & Hauser-Cram, 1999), fathers (e.g., Simmerman, Blacher & Baker, 2001; Willoughby & Glidden, 1995), siblings (e.g., Gallagher, Thomas, Powell & Rhodes, 2006) and grandparents (e.g., Sandler, 1998; Schilmoeller & Baranowski, 1998)
Studies indicate positive aspects of having a child with disabilities in the family including family cohesion, adjusting priorities and increased tolerance (e.g., Hastings & Taunt, 2002; Leiter, Krauss, Anderson & Wells, 2004; Scorgie & Sobsey, 2000; Stainton & Besser, 1998 )
Stressors are also identified such as high stress level and clinical depression (Cummins, 2001), family problems and general sense of pessimism (Fidler, Hodapp & Dykens, 2000), negative interactions with professionals (Stainton & Besser, 1998) and working with a fragmented service system (Reichman, Corman & Noonan, 2008)
Most studies include children with Down syndrome, behavior disorder and/or medical needs. Literature does not address the unique family support issues for families with a child with a rare trisomy condition:◦ Grim prognosis (Brewer, Holloway, Stone, Carothers &
Fitzpatrick, 2002; Nembhard, Waller, Sever, Canfield, 2001)◦ Multiple medical difficulties (Carey, 2005; Parker, Budd,
Draper & Young, 2003)
TRIS Full Survey◦ Completed by parents with children and young
adults (minimum 60 days survival after birth) Part I includes pregnancy and child’s birth Part II focuses on family support Part III examines services, medical needs, etc.
TRIS Modified Survey◦ Completed by parents with children who were
stillborn or lived less than 60 days after birth◦ Includes items concerning pregnancy and child’s
birth and family support
Initial step was examination of short answer items from the TRIS Full Survey; results were used to develop more detailed items ◦ Examined results from 104 project participants
with completed surveys from 2/1/07-10/31/08◦ Focus on identification of family member who was
most and least supportive and why The TRIS Family, friends and finances
protocol was developed for more in-depth information about the support needs of families with a child with a rare trisomy condition
Husband/Spouse◦ “My husband is very involved in Ryan’s care and
totally supportive of me as well.” (full trisomy 18)◦ “We are a team in everything including the care
of our son” (full trisomy 13)◦ “He cares for Rachel whenever he’s around…goes
to all her appointments, couldn’t ask for a better father” (full trisomy 18)
◦ “He is always there holding my hand through everything” (trisomy 9 mosaic)
Husband/Spouse or sibling◦ “He’s the only immediate family member left but
he’s not really supportive” (partial trisomy 13q)◦ “This has been difficult for him to accept”
(trisomy 18 mosaic)◦ “He has no interest. I now think he may have
been embarrassed or just did not want to be bothered with the situation” (full trisomy 18)
◦ “Finds Evie difficult” (trisomy 9 mosaic)
Maternal grandmother most often identified◦ “…emotionally supportive; cared for the child to
give us a break” (trisomy13 with balanced translocation of 5 & 13)
◦ “She listens to me” (full trisomy 13)◦ “She lives 300 miles away but visits regularly and
this means we can get a holiday while she looks after Ellie and there to assist with practical issues…” (trisomy 18 mosaic)
◦ “I can count on them for any at any time of day or night. I trust them with my children whole heartily” (maternal aunts, trisomy 9 mosaic)
Paternal grandmother or other member on father’s side◦ “They live locally and never call or offer to help”
(full trisomy 13)◦ “She is a registered nurse, but would never
consider caring for my son because she was afraid to” (full trisomy 13)
◦ “Her inability to listen and understand his problems and her bizarre comments at times” (trisomy 18 mosaic)
◦ “Refuse to be involved; have their own issues, especially with commitment and expression of feelings” (partial trisomy 9p)
TRIS Full Survey completions as of 9/1/08 = 91 Began email contact 9/08 with parents with a child
with trisomy 9 variant; next group was t13 began 11/08 and, last, t18 began 1/09
Participants with a child with a“rare rares” trisomy (n=23) such as t5q mosaic and partial t16p were not contacted
Multiple email and phone contacts to 68 project participants
TRIS Family, friends and finances protocol sent electronically; participants had option to return electronically or hard copy by mail
Follow-up phone interview to clarify and expand protocol responses; completed with 14 participants (70%) and transcribed
Participants in TRIS Family, friends and finances study: n=20 (29%)◦ trisomy 9: n=18, 2 no; remain 6/16 = 38%◦ trisomy 13: n=24, 5 no; 2 could not locate,
7/17 = 41%◦ trisomy 18: n=26, 4 no; 2 could not locate,
7/20 = 35%◦ Reasons for non-participation: time of contact
(holiday season , family schedule), child related medical complications or other family issues
◦ Majority married (>90%), completed at least some post-secondary education and identified as middle income level
◦ Children’s ages FILL IN
Qualitative analysis methods were used (Huberman & Miles, 1994; Lincoln & Guba, 1985)◦ Multiple readings of data◦ Identification of categories and themes◦ Reliability checks◦ Resolve disagreement by consensus
Family◦ “We discuss each diagnosis and treatment…
We are a team” (mother of three year old with trisomy 9 mosaic)◦ “Our whole family is very supportive of each other…they’ve
accepted Elisha for who she is” (mother of six year old with full trisomy 13)
Friends◦ “She lives it everyday with her kids” (mother of 17 year old with
trisomy 9)◦ “…She comes from a medical background so she often
understands the clinical side of things” (mother of nine year old with trisomy 9p)
Co-workers◦ “She is my co-worker and we are very close. We also work with
children with special needs…” (mother of two year old with trisomy 13 mosaic)
◦ “She listened, she cried, she tried to understand everything I was going thru…(mother of 12 year old with partial trisomy 18q)
Care, transportation, flexibility for doctor’s appointments…I don’t know if I just need a change or if it’s the potential of going nowhere that bothers me about my current position [Reception/scheduling management] (mother of nine year old with partial trisomy 9)
“I need to find an employer that will understand my demands of my family. Until then, I’m willing to sacrifice my career [research scientist].” (mother of five year old with full trisomy 13)
“I was a computer programmer…Ingrid is tube fed, so she’d need nursing care after school in order for me to go back to work… Yes, one wage is just enough for the basic necessities. Any additional expenses, like medical bills or special equipment will require extra income.” (mother of five year old with full trisomy 18)
Found themselves◦ “We learned through our own research basically”
(mother of eight year old with full trisomy 13) Other parents
◦ “I follow the Down syndrome moms around” (mother of three year old with trisomy 9 mosaic)
◦ “I found out from another parent when we were attending a SOFT UK conference…” (mother of six year old with trisomy 18 mosaic)
Professionals◦ “Case manager and medical professionals who have taken an
interest in my situation…I feel lucky to be connected the way I am.” (father of 11 year old with trisomy 9 mosaic)
◦ “When he was born a social worker at the hospital suggested SOFT” (mother of 14 year old with full trisomy 13)
◦ “We have been referred to several other agencies by therapists and teachers” (mother of six year old with full trisomy 18)
Be an advocate◦ “…let your child inspire you to become an educated
advocate for them” (mother of 17 year old with trisomy 9)◦ “Be an advocate always for your child, demand fair and
equal treatment for your child from the medical profession, research, join online support group…” (mother of 14 year old with full trisomy 18)
Don’t give up◦ “At times it’s going to be harder and at times it’s going to be
exhilarating” (father of 11 year old with trisomy 9 mosaic)◦ “Never give up hope! It’s isn’t false hope to tell me about survivors”
(mother of 14 year old with trisomy13 w balanced translocation of 5 & 13)
Talk with other parents◦ “Talk with other parents in your state about supports, benefits…Join a
national organization for support…” (mother of 14 year old with full trisomy 13)
◦ “To ask for contact details of support groups to be used when they are ready” (mother of six year old with trisomy 18 mosaic)
◦ “No person can do this alone and you will go crazy if you try” (mother of six year old with full trisomy 18)
Many positive experiences similar to Leiter, Krauss, Anderson & Wells (2004) and Scorgie & Sobsey (2000)
Similar supports and needs as parents with children with other types of disabilities (e.g., Hastings & Taunt, 2002; Warfield, Krauss, & Hauser-Cram, 1999)
Differences relating to family members and friends with either a child with disabilities or background knowledge in special education, nursing, etc. and unique needs relating to child’s medical issues
Explore ways to change perceptions of children with rare trisomy conditions to increase availability and access to emotional, financial and community support
Share results with professionals to raise awareness of similar and disparate support needs for this population
Offer resources and training for parents Collect data over time to examine changes
in support needs
Debbie BrunsTRIS Principal Investigator
Email: [email protected] Shirley (Fawna) LockwoodTRIS Research Coordinator
Email: [email protected] Contact us at [email protected]
participate in the project
