Sibling RelationshipsDiffering Roles of Adults who have Siblings with Mild-Moderate and

Severe-Profound IDD

AAIDD Annual MeetingJune 1-4, 2015, Louisville, KY

Sarah Hall, Ph.D., Ashland UniversityZach Rossetti, Ph.D., Boston University

• Longest life relationship (Cicirelli, 1994; Heller et al., 2008)

• Relationships are similar to other sibling relationships, but with unique circumstances (Doody, Hastings, O’Neill, & Grey, 2010)

• Able to provide a continuum of support and information (Heller et al., 2008)

• Next generation of caregivers and advocates (Heller & Kramer, 2009; Hodapp, Urbano, & Burke, 2010)

Importance of Siblings

• Extant research has focused on youth, specific disabilities (e.g., Autism, Down syndrome), or severity/level of support needs (e.g., mild/intermittent).• We focused on adult siblings and brothers or sisters with

mild to profound IDD (intermittent to pervasive levels of support).• Intellectual disability, autism, Asperger syndrome, Down syndrome,

cerebral palsy, epilepsy, Rett syndrome, Fragile X syndrome, Angelman syndrome, Turner syndrome, Prader-Willi syndrome, Williams syndrome, Spina Bifida

• Rather than sibling development and adaptation, we focused on relationships and roles.

Contribution

To understand the relationship between people with IDD and their adult sibling from the perspective of their sibling.

Research Questions1. How do the roles siblings take on in their relationships with a brother or

sister with IDD compare across severity of disability?2. What similarities and differences exist between adult siblings who have a

brother or sister with mild to moderate or severe to profound IDD?3. How do adult sibling perceptions of relationships with a brother or sister

with IDD compare across severity of disability?

Purpose

• Recruitment• Sibling organizations: • National (i.e., Sibling Leadership Network)• State (e.g., Ohio SIBS, Massachusetts Sibling Support Network)

• Disability Support Groups:• National (e.g., AAIDD)• State (e.g., Massachusetts Down Syndrome Congress)

• Criteria• Adult (18 and older) • Have a brother or sister with IDD

Participants

Adult Sibling Brother/Sister with IDD

Female 140 (81.9%) 63 (36.8%)

Male 31 (18.1%) 108 (63.2%)

Older than brother/sister 119 (69.6%)

Younger than brother/sister 52 (30.4%)

10-19 years old 4 (2.3%) 19 (11.1%)

20-29 years old 62 (36.3%) 44 (25.7%)

30-39 years old 35 (20.5%) 42 (24.6%)

40-49 years old 28 (16.4%) 33 (19.3%)

50-59 years old 32 (18.7%) 25 (14.6%)

60-69 years old 9 (5.3%) 7 (4.1%)

70-79 years old 1 (0.6%) 1 (0.6%)

Participants (N = 171)

Disability Frequency

M-Mn = 92

S-Pn = 79

TotalN = 171

Intellectual Disability (unspecified or other than Down syndrome)

31 44 75

Down syndrome 36 16 52

Autism Spectrum Disorder 21 23 44

Cerebral Palsy 9 13 22

Emotional & Behavior Disorders 5 -- 5

Sibling-Reported Disability Diagnoses

Comorbid disabilities included hearing loss, schizophrenia, epilepsy, curvature of the spine, bipolar disorder, ADHD, and OCD

Sibling-Reported Severity of ID/Level of Support Needs

12%

42%36%

11%

N = 171

MildModerateSevereProfound

• Mixed methods: Concurrent Embedded Design

• Online survey1. Describe your current relationship with your sibling. 2. Describe how your relationship has changed from when you

were young.3. What roles do you have within your relationship? 4. What changes, if any, would improve your relationship?

Data Collection

QUAL Analysis of QUAL/quan

dataquan

• Inductive and systematic (Bogdan & Biklen, 2003)

• Open and categorical coding• Constant comparative method (Creswell, 2013; Strauss & Corbin, 1990)

• Frequency and representativeness

• Trustworthiness (Brantlinger, Jiminez, Klingner, Pugach, & Richardson, 2005)

• Investigator triangulation• Researcher reflexivity• Particularizability

Qualitative Data Analysis

Quantitative Data Analysis

• Exploratory analysis of possible relationships• Multivariable logistic regression models

• Dependent variables (sibling roles)• Friend, advocate, caregiver, sibling, legal representative, leisure planner, and

informal service coordinator

• Independent variables• Age, education, gender, proximity, severity of disability, relationship status,

and other sibling roles

Findings

• Though siblings of people with mild/moderate and severe/profound disabilities may assume similar roles, there are differences in how they perform each role and the contexts that affect their relationship

• Comparisons between siblings with mild/moderate and severe/profound IDD• Sibling roles• Relationship quality• Emotional responses• Contexts affecting the relationship

Sibling Roles

Friend

Advoca

te

Caregiv

er

Siblin

g

Lega

l Represe

ntative

Leisu

re Planner

Informal

Servi

ce Coord

inator

0

20

40

60

80

Percentage by group

M-M (n = 92) S-P (n = 79)

Role Frequencyn (%)

Example

M-M (n = 92) S-P (n = 79)

Friend 62 (67.4%) 51 (64.6%) I am his best friend.He and I have a very open relationship and have talked about any subject important to him at the time.

Advocate 55 (59.8%) 49 (62%) I handled any bullies that came his way.Advocate for obtaining the supports she desires.

Caregiver 47 (51.1%) 51 (64.6%) I help get her dressed, take her to the bathroom, and fix food.We practice using her phone and home safety skills.

Sibling 55 (59.8%) 41 (51.9%) We argue and get on each other's nerves as typical sibs.I am more of a parent to her than a sibling.

Legal Representative

42 (45.7%) 42 (53.2%) I am her legal guardian as well as her representative payee for Social Security.I have Power of Attorney for my brother.

Leisure Planner 9 (9.8%) 27 (34.2%) I try to incorporate something fun into our time together.We have taken her on vacations with us.

Informal Service Coordinator

24 (26.1%) 15 (19%) Writing my sister's plans, scheduling providers and taking care of her business and financial affairs.I oversee all residential and vocational services.

Dependent Variable Models

Role Positive Relationship Negative RelationshipFriend Quality of the relationship

(higher if ever close and higher still if they are close now)Siblings of the same gender

Advocate Informal service coordinatorSiblingLegal representativeHigher for sisters with IDD than for brothers

Caregiver Leisure planner ProximityGenderEducation of sibling with IDD

Sibling (No significant relationships)

Dependent Variable Models

Role Positive Relationship Negative RelationshipLeisure Planner Legal representative

CaregiverAge of the siblingSeverity of the disability

Informal Service Coordinator

AdvocateLegal representativeAge Education level

Severity of the disabilitySister with IDD

Legal Representative Leisure plannerLegal guardianInformal service coordinatorSeverity of the disability

Comparison of the Models for each Role

friend sibling caregiver advocate service

cordinator leisure legal guardian

(4 i.v.s) (5 i.v.s) (4 i.v.s) (4 i.v.s) (6 i.v.s) (4 i.v.s) (4 i.v.s) (2 i.v.s)

legal

0.87 1.36 1.61 – n/a – 3.47 leisure

1.31

– n/a – 1.45

guardian

3.52 – n/a – caregiver

– n/a –

1.78

sibling

– n/a –

1.12 service-cord

–0.92*

1.78 – n/a –

1.96

advocate

1.26

– n/a – 1.75 close.now 1.53 1.74

close.ever 1.45 severity

–1.36 0.98* 2.63 –1.43

order

–0.72*

sexSib

–1.21 –0.72* 1.26 –1.09 sex.match 0.85*

proximity

–0.89 age

0.06 0.04

educ –0.30*

0.44 educSib

–0.49*

Self-Reported Quality

Frequencyn (%)

Example

M-M (n = 92) S-P (n = 79)

Close or Closer when older

60 (65.2%)

-Includes 8 closer when older

45 (57.0%)

-Includes 10 closer when older

We have always been close…I remember my brother at track and field day running a race. Everyone tells me that I started cheering for him and then my whole class cheered for him to finish the race even though he was dead last. I now see my brother in my oldest son who is on the autism spectrum and it helps me to know how to help my son from my experiences with my brother.

Not close; Closer when younger

17 (18.5%) 12 (15.2%) It was very positive when I was very young, before my brother began school. He is pretty self aware, and at the point we both began to realize he was different and I surpassed him in some areas, it became more complicated.

Not ever close 10 (10.9%) 17 (21.5%) Unfortunately my brother and I rarely speak and have little relationship as adults. I live several states away from home.

No explicit response

5 (5.4%) 5 (6.3%)

Relationship Quality

Emotional Responses of Siblings

Joy/Love Guilt Frustration Worry/Concern Stress0

5

10

15

20

25

30

35

40

45

Percentage by group

M-M (n = 92) S-P (n = 79)

Emotional ResponsesEmotional Response

Frequencyn (%)

Example

M-M (n = 92) S-P (n = 79)

Joy / Love 38 (41.3%) 25 (31.6%) He comes first in my life, even before my little sister and my parents.I feel happy when I am with my sister, and I miss her when I am away from her.

Guilt 13 (14.1%) 28 (35.4%) I enjoy being with her, but I also often feel guilty when I am away from her because I feel that I am not spending enough time with her.I feel guilty for feeling less stressed when I am not around him.

Frustration 28 (30.4) 18 (22.8%) Another thing that has gotten on my nerves lately is that he is so much needier then I remember 10 years ago.

Worry / Concern 20 (21.7%) 3 (3.8%) I worry about her when I am away from her.

Stress 11 (12%) 17 (21.5%) This has caused me years of sleepless nights, lots of stress and tears and absolutely no personal time.

Context Freq. Code Rep. Example

Distance 89 48 (52.2%) • We live close to each other. I have daily contact with her.• It would help if we lived closer together. We see each other

about 4-5 times a year.

Time 56 48 (52.2%) • I do wish that I could spend more time being sister and friend, and less time doing all that I do to keep the services and supports flowing.

• I wish I had more time to spend with my brother. I work full-time during the week and he works part-time on the weekends so we rarely find time to spend together.

Family Dynamics

55 39 (42.4%) • Relationship was very hard to develop because my mother consistently gave all her time and everything to my brother. It is very hard to sit and watch your sibling getting every thing they ask for and being brought everywhere while you are basically ignored.

Pers. Char. / Communication

8971

59 (64.1%)55 (59.8%)

• I do not always enjoy my brother's company because he has limited social and conversational skills and can be very rigid, loud, and verbally threatening, which make interactions frustrating.

Contexts Influencing the Relationship (M/M only)

Context Code Rep. Example

Diagnosis of ASD 23 (29.1%) He has many special interests and lacks social norms. These can get in the way of our relationship.

Social Difficulties 38 (48.1%) They like to talk to death whatever their current interest is.

Communication Needs

35 (44.3%) My brother is mostly nonverbal and rarely communicates via his assistive technology, so that has a significant impact on our relationship.

Behavioral Challenges

23 (29.1%) If something were changed or if something happened that she did not want, she would throw a horrible temper tantrum.

Sibling Proximity 25 (31.6%) Living closer would be a huge improvement.

Contexts Influencing the Relationship (S/P only)

Discussion• Sibling Roles

• When the disability is more significant, the sibling is more likely to assume the roles of caregiver, legal representative, and leisure planner

• When the disability is less significant, the sibling is more likely to assume the role of an informal service coordinator

• Though the percentage of siblings in most of the roles was similar, there were differences in how each role was performed with M/M and S/P disabilities

• Gender Differences• Sibling pairs of the same gender were more likely to be friends• Sisters were more likely to act as a caregiver• Siblings were more likely to advocate for their sisters with IDD • Siblings were more likely to provide informal service coordination for their

brothers with IDD

Discussion (continued)

• Emotional Responses• M/M - Siblings have more mixed or conflicting emotions • S/P – Siblings had more stable feelings of either close or not close• The emotions felt by siblings may be affected by the type and severity of their

brother/sister’s disability, communication and behavioral challenges, family dynamics, and the specific roles they assume

• Contexts• Though some contexts that affected the sibling relationship were similar (i.e.

proximity, communication, and social/behavioral skills), there were significant differences in what affected siblings depending on the severity of disability

Implications• All siblings of people with IDD may benefit from supports specific to

each role they assume• The amount and type of support still needs to be individualized

• There may be differences in emotional support needs depending on the severity of the disability• Siblings with brothers and sisters with more significant support needs may

benefit from talking with each other and receiving information that relates specifically to more intensive supports and opportunities in the community

• Siblings may need more support to enhance their relationship quality (how close they feel) with their brothers and sisters who have more significant disabilities

Implications (continued)

• Increased communication, positive behavior, and social interaction skills may strengthen sibling relationships. Families and professionals may support siblings by:• Providing brothers/sisters with IDD instruction and opportunities to practice• Teaching siblings how to use different modes of communication• Encouraging brothers/sisters with IDD to initiate interactions with siblings• Including siblings in positive behavior support plans for their brothers/sisters

• The roles that siblings assume are impacted by the decisions of parents, involvement of other siblings, and personal choice of siblings.• Conversations about future plans and the responsibilities of family members

should begin early on in life• Professionals may share inclusive opportunities and support options early on

Questions?

Sarah A. Hall, Ph.D.Ashland University

Department of Inclusive Services & Exceptional Learnerssahall@ashland.edu

Zachary S. Rossetti, Ph.D.Boston University

Department of Special Educationzsr@bu.edu

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introduction to theories and methods (4th Ed.). Boston: Allyn and Bacon.Brantlinger, E., Jiminez, R., Klingner, J., Pugach, M., & Richardson, V. (2005).

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Doody, M. A., Hastings, R. P., O’Neill, S., & Grey, I. M. (2010). Sibling relationships in adults who have siblings with or without intellectual disabilities. Research in Developmental Disabilities, 31, 224-231. doi: 10.1016/j.ridd.2009.09.007

References

Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J., & Dufresne, D. (2008). The Sibling Leadership Network: Recommendations for research, advocacy, and supports relating to siblings of people with developmental disabilities [White Paper]. Retrieved from http://www.rrtcadd.org/Resource/News/News_Archives/assets/SLN_White_Paper.doc

Heller, T., & Kramer, J. (2009). Involvement of adult siblings of persons with developmental disabilities in future planning. Intellectual and Developmental Disabilities, 47(3), 208-219.

Hodapp, R. M., Urbano, R. C., & Burke, M. M. (2010). Adult female and male siblings of persons with disabilities: Findings from a national survey. Intellectual and Developmental Disabilities, 48, 52-62.

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