1. 7/9/2014
1
Informing the content development
of a relationship curriculum for
teenagers with Trisomy 21:
A survey of parents and healthcare
professionals
Kristy Palmer
MPH candidate
JSPH, Thomas Jefferson University
Outline
• Background
• Purpose
• Methods
• Results
• Recommendations
Background
• Trisomy 21
• Living longer, full lives
• Physical development same as typical teens
• Emotional development may be delayed
• Same risks: pregnancy, STIs
• Increased risk of abuse
Background
• T21 Program Aware of Need
• Incorporate relationship/sexual health session
into larger “transition” curriculum
• Hundreds of Sexual Health Curricula
• Case Study – the Pittsburgh trial
Study Purpose
• Prioritize Topics
• Better Understand Teen Access
Methods
• REDCap Surveys
▫ Qualitative Healthcare Professionals
▫ Quantitative Parents
• Safety features of REDCap

2. 7/9/2014
2
Methods - Quantitative
• Recruitment via CHOP T21 Listserv
▫ Phone Calls
• 73 Parents of Patients Ages 12-22
• Data Analysis by SPSS
▫ Stratified by Child Age, Gender, Older Siblings
• 6 Sexual Health Topics from SIECUS National
Guidelines
Parent Survey Instrumentation
• 12 Questions
▫ Q1-Q3 Demographic
▫ Q4-Q8 Communication/Access
▫ Q9 Priority Topics
▫ Q10-Q12 Planning Purposes
Methods Qualitative
• 15 Healthcare professionals affiliated with CHOP
T21 Program
• Analyzed by hand
▫ Tallying keywords based on SIECUS topic list
• 2 independent MPH reviewers
Professional Survey Instrumentation
• 8 Open-Ended Questions
▫ Professional Role, Experience
▫ Priority Topics
▫ Teen Access to Information
▫ Common ?s – Teens/Parents
▫ Resources
Results – Professional Demographics
• 7/15 Professionals – 47%
Health Care Professional Qualitative Survey Respondents
Professional Role
Years of Experience with
Trisomy 21
Educational Consultant 4
Research Coordinator 5
Physician 11
Occupational Therapist 1-2 intermittently
Physical Therapist (Mother) 11
Physical Therapist 5
Social Worker 41
Results – Parent Demographics
• 49/73 Parents
= 67%
• Older Siblings
54.8% Yes
45.2% No
Demographics for Children with Trisomy 21 of
Parent Survey Respondents
Age of Child n %
Under 12 7 14.3
12-13 6 12.2
14-15 15 30.6
16-17 8 16.3
18 + Over 13 26.5
Totals 49 100
Child Gender n %
Male 15 35.7
Female 27 64.3
Totals 42 100

3. 7/9/2014
3
Professional Opinion of Parent
Discussions
• 1 Positive:
▫ “I do feel most parent’s do a good job at preparing
and educating their child. They want to see their
child mature and develop and along with that
come the questions regarding relationships and
sexual health.” (Educational Consultant, 4 years)
Professional Opinion of Parent
Discussions
• Mostly Negative – Lack of Comfort/Preparation/Skills
• “I feel that topics that are difficult to discuss are often
skipped over or ignored. I also feel that patients with T-
21 are typically thought of as much younger than reality
which impedes appropriate conversations and learning.”
(Occupational Therapist, 1-2 years)
• “Most times they have no idea how or what to talk about,
and would rather not think of their children/young
adults as sexual beings… Kids with DS [Down syndrome]
often have ‘boy friends’ or girl friends, but parents do not
see these relationships as in need of guidance like they
would be providing with a typical child” (Physician, 11
years)
Parent Self-Reports
Child Age
12-13 14-15 16-17 18+ Totals X2
No 2 7 3 5 17 0.877
Yes 4 7 5 8 24
Totals 6 14 8 13 41
Child Gender
Male Female Totals X2
No 10 7 17 0.021
Yes 5 19 24
Totals 15 26 41
Older Siblings
No Yes Totals X2
No 4 13 17 0.025
Yes 15 9 26
Totals 19 22 41
Have you started discussing relationships/sexual health?
Parent Self-Reported Preparedness
• 0-100 sliding scale
• Mean score = 51.89
• Standard deviation = 29.846
Parent Resources
• 21 (51.2% of n=41) Parents answered “Yes” they
have found useful resources
Inclusion in School Health/SexEd
• “School programs rarely offer sex ed to kids
with disabilities and if they do, parents are not
aware of the curriculum.”
Physician (11 years)

4. 7/9/2014
4
Inclusion in
School Health/
SexEd
• Parent Responses
▫ Gender, Age
Not Signficant
Will your child be included?
n %
Yes 16 39
No 14 34.1
I Don't Know 11 26.8
Totals 41 100
Of those Yes Responses, Will information be presented in a
way your child will understand?
n %
Yes 4 25
No 4 25
I Don't Know 8 50
Totals 16 100
Healthcare Provider
Age of Child
Total Χ212-13 14-15 16-17 18+
Did your child's
healthcare provider
discuss relationships/
sexual health?
Yes-
with me
in the
room
0 1 0 1 2
0.482
Yes- 1
on 1
with my
child
0 2 2 0 4
No 6 11 6 12 35
Total 6 14 8 13 41
If YES, 83.3% (5/6) thought their child
understood
16.7% (1/6) did not think their child
understood
Professionals on Common Discussions
• “They rarely ask questions, but I would say I
don’t give them the opportunity.”
Physician, 11 years
• “…because I have minimal rapport with patient’s
I feel as though I get a lot of surface questions
but not in depth discussions. Those topics
typically revolve around work, school, camp,
etc.” Occupational Therapist 1-2 years
Media/TV
• “The problem with getting this information from
the media is that it is often unrealistic.
Individuals with T21 sometimes have difficulty
separating reality from TV, so by receiving
information from TV and not from an honest
source, individuals with T21 may form skewed
perceptions of relationships/sexual health.”
(Research coordinator, 21 years)
SIECUS Topics
Key Concept 1: Hum an Development
T opic 1: Reproductive and Sexual Anatomy
and Physiology
T opic 2: Puberty
T opic 3: Reproduction
T opic 4: Body Image
T opic 5: Sexual Orientation
T opic 6: GenderIdentity
Key Concept 2: Relationships
T opic 1: Families
T opic 2: Friendship
T opic 3: Love
T opic 4: Romantic Relationships and Dating
T opic 5: Marriage and Lifetime Commitments
T opic 6: Raising Children
Key Concept 3: Personal Skills
T opic 1: Values
T opic 2: Decision-making
T opic 3: Communication
T opic 4: Assertiveness
T opic 5: Negotiation
T opic 6: Looking for Help
Key Concept 4: Sexual Behavior
Topic1: Sexuality Throughout Life
Topic2: Masturbation
Topic3: Shared SexualBehavior
Topic4: Sexual Abstinence
Topic5: Human SexualResponse
Topic6: Sexual Fantasy
Topic7:Sexual Dy sfunction
Key Concept 5:Sexual Health
Topic1: Reproductive Health
Topic2: Contraception
Topic3: Pregnancy and Prenatal Care
Topic4: Abortion
Topic5: Sexually Transmitted Diseases
Topic6: HIV and AIDS
Topic7:Sexual Abuse, Assault,Violence,and Harassment
Key Concept 6: Society and Culture
Topic1: Sexuality and Society
Topic2: Gender Roles
Topic3: Sexuality and the Law
Topic4: Sexuality and Religion
Topic5: Div ersity
Topic6: Sexuality and the Media
Topic7:Sexuality and the Arts
Prioritizing Topics
Healthcare Professionals Parents
1. Personal Skills
2. Relationships
3. Sexual Behavior
4. Human Development
5. Sexual Health
6. Society & Culture
1. Personal Skills
2. Relationships
3. Human Development
4. Sexual Behavior
5. Sexual Health
6. Society & Culture

5. 7/9/2014
5
Recommendations
• Main concern: Personal Skill Building
• Second concern: Relationships
• Parent involvement necessary
• Human Development/Basics covered at home
▫ Pre-test to guide facilitator
• Provide Parent Resources
• Discuss Clinic Time with Providers
Acknowledgements
Amy Leader, DrPH, MPH
Symme Trachtenberg, MSW
Natalie Stollon, MSW
Krissy Cellary, MPH
Caren Steinway
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Questions???