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Adult Siblings of Individuals with Developmental Disabilities: Factors Affecting Closeness and Future Caregiving. Ann P. Kaiser & Meghan Burke Vanderbilt Kennedy Center Vanderbilt University Nashville, TN USA. Sibling Relationships Are Important. Longest lasting family tie - PowerPoint PPT Presentation
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Ann P. Kaiser & Meghan BurkeVanderbilt Kennedy Center
Vanderbilt UniversityNashville, TN
USA
AUCD November 20091
Adult Siblings of Individuals with Developmental Disabilities: Factors Affecting Closeness and Future Caregiving
Sibling Relationships Are Important
Longest lasting family tie
Sharing family heritage, genetically, experientially
Ideal sibling relationship: egalitarian, reciprocal and mutual
AUCD November 2009 2
Summary: Limitations in Current Research
Lifespan issuesAdolescence, early
adulthood, Middle adulthoodEnd of life issueChanging contexts of
services, culture, healthInterventions to
support siblingsChildhood interactionsSupports to siblings
across the lifespanCritical transitions and
decision making
AUCD November 2009 3
Adult Siblings
AUCD November 20094
As children and as adults, most siblings have been report to be doing well (Stoneman, 2005; Hodapp & Urbano, 2008)
Recently, studies of teens and young adults siblings of individuals with ASD have been reported to have relatively higher levels of depression and anxiety than other young adult siblings (Orsmond & Selzer, 2007)
Research Questions
AUCD November 20095
What is your current relationship with your sibling with disabilities?
According to the sibling without a disability According to the sibling with a disability
What factors may affect sibling relationships?
What about future caregiving roles? According to the sibling without a disability According to the sibling with a disability
What supports or factors are needed for siblings?
Method I
AUCD November 20096
Tennessee Survey of Adult Sibling179 item survey containing questions about:
The typical siblingTheir sibling with disabilitiesTheir relationshipCurrent responsibilities and future plansNeeds for support for their sibling with disabilities
Included the same questions as the National Survey of Adult Siblings with additional questions about needs of sibling with disabilities
Responses tabulated by Survey Gold and exported to SPSS for analysis
AUCD November 20097
Study Method I
AUCD November 20098
Survey distributed across the state of TNContacted family and adult service providers
throughout the state of TN to distribute notices to families
Web-based responses Individual copies emailed to familiesPaper copies made available upon requestVanderbilt Kennedy Center website
Yield: 190 responses from siblings ages 18-71 yrs
Study Method II
AUCD November 20099
Responses to 3 open-ended questions from the survey were coded for themesUsed EthnoNotes to code and group individual
responsesResponses were rated on a 5-point Likert Scale
developed for each response themeRating verified by a second coder
o What is your relationship like with your brother or sister now?
o How has your relationship changed in the last 5 years?
o What do you expect your relationship to be like in the next 5 years?
Participants Sample Characteristics (N=190)
Age 37.6 yrs (Range: 18-71; SD=14.2)
Gender 79% Female
Ethnicity 93% White3% African American4% Other
Education 41% High School37% College22% Master’s or PhD
Marital Status 33% Never married52% Currently married10% Divorced/Separated5% Widowed
AUCD November 2009 10
Their Siblings With Disabilities
AUCD November 200911
Entire Sample
Age 35.8 yrs (Range: 8-68)
Gender 55 % Male
Disability* MR 43%ASD 13%DS 22%Emotion/BD 13%
Residential arrangements Lives with parents 49%Lives in sibling’s home 9%Other residence 42%
Time to travel <15 min 34.4%16-60 min 25.6%1 hour 31.2%Not reported 8.8%
* Does not sum to 100%; more than one disability could be specified; many other disabilities included but not specified here.
Some of our sibling pairs
AUCD November 200912
24 year old single Male who attends graduate school out of state, training to become an accountant. His brother has Down syndrome and is about to graduate from high school.
29 year old married Female, special education teacher and director of Special Olympics. Her sister is an adult who has had various disability labels (ED, MPD, severe depression) and lives in house provided by developmental services group.
27 year old married Female, PhD whose 22 year old brother with Down syndrome has no day activities and lives with his parents. No other sibs.
20 year old single Female, college student (studying special education,) whose 13 year old sister with autism goes to school and lives with parents.
25 year old single Male, currently a landscaper, recently diagnosed bi-polar, who lives with his parents and 33 year old sister. His sister with ID has a day placement and also lives with their family
29 year old married Female with 3 children, case manager and job coach. Her 28 year old sister has ID. Typical sib has taken full responsibility for her sister with disabilities since age 20 when their mother died. Sib with ID lives with sister’s family and works at sheltered workshop where sister works.
Results: Siblings Are Healthy
Construct Scoring Sib Ratings
Physical Health 1-5; 5 is positive 3.62 (0-5; SD 1.04)
Relationship Benefits
0-30; 30 is positive 23.81 (0-30; SD 5.00)
Depression 0-20; 20 is negative
8.12 (0-19; SD 3.35)
Positive Strengths 0-35; 35 is positive 31.37 (0-35; SD 4.30)
AUCD November 2009 13
Most siblings have close relationships
Contact DailySeveral times/weekWeekly/biweeklyMonthly> Monthly
30.7%24.3%29.7%6.3%9.0%
Is time enough?
Not enoughSomewhat not enoughAbout rightSome what too much
25.9%31.2%33.9%9.0%
How much affection?
Extremely/ Very muchPretty much/somewhatNot much
74.6%20.1%4.2%
How close? Extremely/Very muchPretty much/ somewhatNot much/not at all
69.3% 20.0% 10.7%
14AUCD November 2009
Sibling Closeness Has Many Forms
Theme Examples
Very close “We are VERY close. I see her or talk to her every day…She is a very important part of my life.”“It is a very close and caring relationship built on years of trust and understanding.”
Close, Typical Sibling is like a mother
“I have a close relationship with my sister. When my parents aren’t there, I treat her more like she I my child making sure everything she needs is taken care of”“Often, I take over the mommy role.”
Close, Typical Sibling provides instrumental/ affective support
“We have a very close relationship. I have taken care of him a lot since he was born. I currently spend most of my week watching him and help home school and tutor him”
Close, but changes would help us be closer
“Good. But I would like to live closer so we could see each other more.”“It is better. She is now correctly being treated for her behavior problems, which we tried for years to get.”
AUCD November 2009 15
closeness…. “ My sister is my inspiration
in my life. I do not think that I would be the person I am today without her.
But we also have a very real side of our relationship. We sometimes disagree and pick on each other just like any siblings do.
Having a a sister with a disability does not mean that our relationship is not as close as typical siblings’ relationships…
I would argue my relationship with my sister is better because we have to depend on each other”
AUCD November 2009 16
Another Voice: Siblings With Disabilities ““closenesscloseness””“She makes a lot, a lot of
effort to spend special time with me...just good buddies.”
“He has gotten a little bit closer, but sometimes he would only talk to me about issues with my parents…like do you want to split a gift”
She used to play SimsII with me, That’s after she softened up..after we became less fierce with each other.
AUCD November 2009 17
Sibling closeness may be moderated by behavior
18AUCD November 2009
0
1
2
3
4
5
6
Behavior(1-2)
Behavior(3)
Behavior(4-5)
Understand
Trust
Fair
Respect
Affection
•Behavior Ratings: Not a problem (1-2), Somewhat of a problem (3), Very much a problem (4-5)•These items come from the Positive Affect Index (Bengston & Black, 1973). The scaling is from 1-6 with 1 being not at all and 6 being extremely. For example, “How much do you respect your brother/sister?”.
Sibling mental health may also be moderated by behavior
19AUCD November 2009
0
0.5
1
1.5
2
2.5
Behavior(1-2)
Behavior(3)
Behavior(4-5)
I felt depressed
My sleep wasrestless
I felt lonely
I could not getgoing
I had cryingspells
•Behavior Ratings: Not a problem (1-2), Somewhat of a problem (3), Very much a problem (4-5)•The CES-D was used to examine health on a five point scale (1: Rarely and 5 being most or all of the time).
How do siblings feel about the behavior of their brothers and sisters?
•He needs more behavioral therapy; he needs a consistent therapist to work on anger control and social skills.
•I think she would benefit from some kind of counseling or behavioral therapy. I think it would make a huge difference in her relationship with all of her siblings. •I love him to death but sometimes he throws bad fits with me and it makes me upset because it seems like he doesn’t want to be around me but I know inside that he does.
•My brother is angry much of the time he is with me. He screams at me and curses me and slams doors and kicks things…I am afraid of him as he loses his temper easily, so I do not look forward to spending time with him.
What is your future role in your sibling’s life?
Most siblings expect to have primary or shared responsibility for their brother or sisters (70%)
Relatively few are current legal guardians (19%)
Although only 18% said they were unclear about their future role, most reported specific plans had not been made
AUCD November 2009 21
Areas of Future Guardianship
AUCD November 2009 22
Area of Guardianship Level of Responsibility
Residential Arrangements 47.1% Will have primary resp.
29.6% Will have shared resp.
12.7% Others will have resp.
10.6% I don’t know
Financial Arrangements 43.9% Will have primary resp.
25.9% Will have shared resp.
15.3% Others will have resp.
14.9% I don’t know
Interact with Service System 48.1% Will have primary resp.
24.8% Will have shared resp.
10% Others will have resp.
17.1% I don’t know
Another Voice: Siblings With Disabilities “future living future living situation”situation”
“I do better on my own…I’ve had roommates and it turned our really bad...I am really messy… I still prefer living on my own.”
“With friends.”
“Different kind of place…some friends…far (from parents)”
“I guess living with my sister."
AUCD November 2009 23
Future independence for sibling with disability
AUCD November 200924
“He’s talked to me about moving..closer to where (Mom) lives. But he doesn’t know yet. Mom was thinking about buying the condominium across the breeze way.
I was thinking that was convenient, in case his care provider didn’t show up or somebody got sick.”
He said “Mom too close, too close.”
Concerns for the future “I’m just scared about what I’m going to do the day that my
parents aren’t here and I might have a husband and kids of my own and how I am supposed to take are of my sibling.”
“I think one of the scariest things about being a sibling of someone with a severe disability is the knowledge that someday you will probably end up being their caretaker”
“It is my concern that should my mother become unable to care for my sibling, I would be left in the dark on how to handle his needs.”
“I do not know what my parents’ plans are or what they have saved for his support in later years.”
AUCD November 2009 25
Hope for the Future“I hope that he has got a job. I hope that some great person takes a chance on him and gives him opportunity to do whatever it is that he can…that fulfills him the most with his career. And, I expect him to be living on his own. And, I don’t know how it will all work.”
AUCD November 200926
What would make it easier to support your sibling?
A plan for the future Information about
sibling’s disability and future abilities
Information about resources in community
Meeting specific needs of the sibling with disabilities
Respite or assistance in caring for my sibling, for parents now and later for myself
Living closer
AUCD November 2009 27
Top 10 Needs of Siblings with Disabilities in Tennessee
AUCD November 200928
1. Information & referrals for services (25.6%)
2. Day services (25.8%)3. Dental care (21.5%)4. Job
placement/support (20%)
5. Post Secondary Education (19.9%)
6. Behavior Intervention/therapy (19.2%)
7. Residential placement (15.3%)
8. OT, PT or Speech (15.0%)
9. Case management (14.8%)
10. Respite care (14.7%)
What siblings would like parents of children with disabilities to know
Be informed about your child’s disability
Plan for the futureKnow what services are
availableBe patientGet respite careGet support for your selfChallenge your child with
a disabilitySpend time with your
typical childGive your child
unconditional love
AUCD November 2009 29Question 177; qualitative analysis
Summary: Who are adult siblings?§ Adult siblings are
healthy, positive young people
Their siblings with disabilities are important to them and most of them spend time with them every week.
§ Their relationships with their siblings are generally positive
§ They expect these relationships to remain positive, or grow more positive in the future
AUCD November 2009 30
Summary: Who are adult siblings?
Majority assume they will have or share responsibility for sibling in the future
Very few have a specific plan for the future
Few know details of siblings needs or potential for independence AUCD November 2009 31
Policy and Practice Implications
AUCD November 200932
Provide futures planning that includes adult siblings especially as they make life choices
Provide information About siblings’ disabilities, needs, skills, potentialCommunity options for living, working, educationAbout family resources, plans
Provide support related to being a siblingContact with other siblingsCounseling and informal supports as needed
Address critical behavior support needs of individuals with disabilities
Special Thanks To:
AUCD November 200933
TN Council on Developmental DisabilitiesTN Family Support ProgramRick Urbano and Bob HodappMegan Roberts and Andrew MacFarlandSibling Research ConsortiumThe Arc of the USAdult siblings and their families who participated in
our studyTom Weisner and Eli Lieber
For more information
Ann Kaiser & Meghan Burke
Department of Special Education, Box 228
Vanderbilt UniversityNashville, TN 37203
[email protected] Meghan.M.Burke@vanderbi
lt.eduAUCD November 2009 34