Core Project Team Dr. Osman IpsirogluMs. Dawn … - Focus Group Discussion (Final) - June 5... ·...

Survey results prepared by

Nadia Beyzaei B.Sc. Student

Ipsiroglu Lab BCCH/UBC

Arshdeep Marwaha B.Sc. Student


Emmanuel Tse B.Sc. Student


Dr. Osman Ipsiroglu MD (FRCPC), PhD, MBA, MAS,

Clinical Associate Professor

Dr. Osman Ipsiroglu Department of Paediatrics, BCCH, UBC

Dr. Linlea Armstrong Department of Medical Genetics, UBC on behalf of the Medical Research Team

Ms. Dawn McKenna & Ms. Pat Hanbury on behalf of the Down Syndrome Research Foundation

Dr. Sylvia Stockler Department of Paediatrics, BCCH, UBC

Core Project Team

3644 Slocan Street ▪ Vancouver, BC ▪ V5M 3E8 Phone: (604) 453-8300 (ext. 8408) ▪ Fax: (**1 604) 453-8338

Robin Friedlander Department of Psychiatry, UBC

Jane Hailey Department of Pediatrics, UBC

Christine Loock Department of Pediatrics, UBC, Downtown Eastside Cluster

Susan Baer Department of Psychiatry, UBC

Nazmudin Bhanji Department of Pediatrics, UBC

Caron Byrne Department of Psychiatry, UBC

Allyson Davey MD, Pediatrician, Interior Cluster

Aven Poynter President of BC Pediatric Society, MD, Pediatrician, Lower Mainland Cluster

Stephanie Stevenson Executive Director of BC Pediatric Society

Paul Thiessen Department of Pediatrics, UBC

Grace Yu Department of Pediatrics, UBC

Susan Fawcett Down Syndrome Research Foundation

Melvin Chan B.Sc. Student, Ipsiroglu Lab BCCH/UBC

Tanjot Singh Department of Medical Genetics, UBC

Karen Derry BCCH/SHHCC/ BC Women’s Hospital

Additional Project Team Members

Advisory Board

Introduction……………………………….…………………….

Demographics, Diagnoses and Development.……

Sleep/Wake Behaviours……………………………………

App Development…………………………………………….

Discussion of Visualization Concepts…………………

Down Syndrome Learning Module……………………

Presenters

Ms. Dawn McKenna on behalf of the Down Syndrome Research Foundation

Nadia Beyzaei B.Sc. Student, Ipsiroglu Lab BCCH/UBC

Dr. Osman Ipsiroglu MD (FRCPC), PhD, MBA, MAS, Clinical Associate Professor

Arshdeep Marwaha & Emmanuel Tse B.Sc. Students, Ipsiroglu Lab BCCH/UBC

Dr. Osman Ipsiroglu MD (FRCPC), PhD, MBA, MAS, Clinical Associate Professor

Dr. Linlea Armstrong Department of Medical Genetics, UBC

Sections 1-3: Demographics, Diagnoses and Development

Of the 364 respondents, the following caregivers responded:

Demographics: Who Responded to the Survey

Mothers 305 84%

Fathers 31 9%

Other Relatives 14 4%

Service Providers 8 2%

Teachers 4 1%

Friends 2 0.5%

Caregiver since birth 1 0.25%

Demographics: Location

BC 256 AB

59 SK

1 ON 31

NF 2

Canadian: 349 Responses

American: 6 Responses

Of the 361 responses, the age range of individuals with DS is as follows:

Demographics: Age Range of Individuals with DS

Oldest (57)

Age Youngest (<1)

Median (11-12)

75 65 55 45 35 25 15 5

Of the 177 responses, the highest level of education out of those who are no longer attending school is as follows:

Secondary School Attended College

Attended University Diploma or Certificate

Home schooled Elementary School

Middle School

33% 9%

3. 3%

2% 1%

1%

1. 2.

3%

4. 5.

6. 7.

Associates Degree Bachelor’s Degree

Other

8. 9.

10.

0% 0%

48%

Too young; Not completed school; PREP Program; Segregated school for children with disabilities

Demographics: Highest Level of Education

Of the 287+ respondents, the following are the services being utilized:

Demographics: Services

Service Currently

n (%)

In the past year n (%)

Over 12 months ago

n (%)

Has never attended

n (%)

Community Health Services (e.g. Public Health Unit)

27 (9) 80 (27) 110 (37) 70 (23)

Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)

Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)

Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)

Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)

Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)

Psychologist 13 (5) 23 (8) 51 (18) 189 (66)

Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)

Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Of the 364 responses, 97% of individuals with DS have a primary physician:

Demographics: Primary Physician

Ages 0-18 Ages 19+

Pri

mar

y P

hys

icia

n

Freq

uen

cy o

f V

isit

s

Paediatrician General Practitioner Other

67% 31%

2%

General Practitioner Paediatrician Other

83% 15%

2%

12%

40%

25%

19%

4%

Occasionally

Every 6-12 months

Every 3-6 months

Every 1-3 months

Very frequently

20%

38%

22%

17%

1%

Occasionally

Every 6-12 months

Every 3-6 months

Every 1-3 months

Very frequently

Of the 364 responses, 87% of individuals with DS see a specialized physician:

Demographics: Specialized Physician

Dentist

Cardiologist Developmental Paediatrician

26%

19%

5%

Ophthalmologist ENT

11%

20% Dentist

Cardiologist Endocrinologist

47%

13%

4%

ENT Ophthalmologist

9%

13%

Orthopaedic Surgeon

Developmental Paediatrician Gastroenterologist

29%

13%

6%

Endocrinologist Obstetrician/Gynecologist

9%

15%

Ages 0-18 Ages 19+

Seen

in t

he

Past

Yea

r Se

en 1

2+

Mo

nth

s A

go

Psychiatrist

Endocrinologist Cardiologist

19%

12%

9%

Gastroenterologist Oncologist

11%

16%

Of the 364 responses, the alternative services individuals with DS see are as follows:

Demographics: Alternative Services

Chiropractor 11%

Naturopath 8%

Homeopath 3% Biofeedback 1% Integrative Health Physician 1%

Of the 364 responses, the housing situation of individuals with DS is as follows:

At home with family Home share

In a protected group home With other relatives

With foster parents With a partner

Other

91% 3%

3. 1%

1% 0%

3%

1. 2.

2% 4.

5. 6.

7.

“Lives with: Mother 2 weeks/month; Caregiver 2 weeks/month; Father 2 weekends/month”

“Lives by herself in her own condo and spends weekends with parents” “Shares an apartment with a roommate who is not special needs”

“Living at home but beginning to transition to living in a small condo by herself.”

Demographics: Housing Situation

Of the 363 responses, 94% of caregivers of individuals with DS have a support

system:

Family members Friends

Community Professional Community volunteer

Other

85% 65%

3. 6%

18%

1. 2.

41% 4.

5. Institutional support (e.g. Family support institute, DSRF) 6% Church 2% Parent groups 2% Chid care & Day programs 2%

Demographics: Support Systems

Independent but need some help 42%

Independent (can eat by him/herself) 41%

Needs help 11% Needs to be fed 5% Tube Feeding 1%

Of the 271 responses, the eating habits of individuals diagnosed with DS are:

Development: Self Supporting Skills

Independent 38%

Needs to be helped 31%

Needs to be dressed 29% Don’t know 2%

Of the 271 responses, what are the dressing habits of individuals diagnosed with DS?

Development: Self Supporting Skills

Nighttime Daytime

Uri

ne

Sto

ol

Always: 22% Occasionally: 23%




Of the 271 responses, individuals diagnosed with DS have the following urine or stool incontinence:

Development: Toilet Training

Purpose of Communication Does this Spontaneously

Does this when prompted

Does not do this

Greet 150 (75) 53 (26) 12 (6)

Refuse 173 (86) 7 (4) 19 (3)

Request preferred object/activity 164 (82) 21 (10) 19 (10)

Request information 94 (47) 10 (5) 88 (44)

Acknowledge 101 (50) 39 (19) 54 (27)

Comment 131 (66) 15 (8) 53 (27)

Request Assistance 131 (65) 50 (25) 26 (13)

Request re-occurrence 163 (81) 24 (12) 17 (9)



Does not do this

Greet 150 (75) 53 (26) 12 (6)

Refuse 173 (86) 7 (4) 19 (3)



Acknowledge 101 (50) 39 (19) 54 (27)

Comment 131 (66) 15 (8) 53 (27)





Does not do this

Greet 150 (75) 53 (26) 12 (6)

Refuse 173 (86) 7 (4) 19 (3)



Acknowledge 101 (50) 39 (19) 54 (27)

Comment 131 (66) 15 (8) 53 (27)





Does not do this

Greet 150 (75) 53 (26) 12 (6)

Refuse 173 (86) 7 (4) 19 (3)



Acknowledge 101 (50) 39 (19) 54 (27)

Comment 131 (66) 15 (8) 53 (27)



Development: Expressive Language

Of the 192+ responses, the following are how individuals with DS communicate with their caregivers:

High pain tolerance 49% Challenges with clothing or textures 30%

Likes Leg rubs or leg massages 24%

Of the 271 responses, individuals diagnosed with DS have the following sensory :

Development: Sensory Processing

Swimming Dancing

Hiking Biking

Working out at the gym 25% Yoga 24%

Bowling 17%

Soccer 12% Basketball 12%

Walking 10% Baseball 10%

Gymnastics 7% Golf 6%

Skiing 6% Horseback riding 6%

Skating 5% Hockey 5%

Martial Arts 4%

80% 71%

39% 34%

Of the 271 responses, individuals diagnosed with DS engage in the following physical activities:

Development: Physical Activities

Watch TV 63% Reading 31%

Computer games 16%

Video Games 14%

Listening to music 9%

Watching videos/movies 5%

Solving Puzzles 2%

Painting 2%

Of the 271 responses, individuals diagnosed with DS engage in the following sedentary activities:

Development: Sedentary Activities

Of the 313 responses, 74% of individuals with DS have been hospitalized:

Respiratory Cardiovascular

ENT Gastrointestinal

Immune related Dental

Orthopaedic Urinary system

Eye

61% 2.

10% 10%

8% 6%

6%

5%

5%

1. 17%

3. 4.

5. 6.

7. 8.

9.

Skin 10. 5%

Demographics: Causes of Hospitalization

Demographics: Causes of Emergency Room Visits

Of the 312 responses, 81% of individuals with DS have been to the emergency

room:

Respiratory

Fever

General Respiratory Problems

Vomiting

Asthma Common cold

Orthopaedic issues Skin issues

Diarrhoea

42%

2.

28%

14%

17% 15%

8% 7%

6%

1.

19% 3.

4. 5.

6. Immune related issues 7. 6%

Pneumonia 40%

Demographics: Causes for Surgeries

Tongue 3% Tongue reduction

Nervous 2% C1/C2 fusion

Integumentary 5% Cysts

Other Ear-Related 3%

Ear surgery Hearing device Mastoidectomy

Urinary 2% Bladder/Vesicostomy

Cancer 2% Central line/PICC

4% Biopsy of intestines Digestive

Others Appendix removal IVAD placement Nasal cavity infection Nasolacrimal probing

Nose surgery Pulmonary sequestration

Tracheotomy Vein stripping

4%

Ear Tubes 56% Adenoids/tonsils 43%

Heart 35%

Eyes 15% Dental 11%

Bowel 10% Orthopaedic 8%

Abdominal 6% G-tube insertion 5%

Reproductive 7%

Of the 263 responses, 72% of individuals with DS have had surgery:

The following is a list of the most common conditions of individuals with DS:

Ophthalmic conditions ENT/Respiratory conditions

Cardiovascular conditions Dermatological conditions

Endocrine conditions Sleep diagnoses

Gastrointestinal conditions Orthopaedics conditions

Mental health conditions

46% 2.

35% 34%

26% 22%

21% 18%

14%

1. 39%

3. 4.

5. 6.

7. 8.

9.

Neurodevelopmental conditions 10.

Diagnoses: Top 10 Overview

5%

17%

26%

0-12 13-20 21+

Pe

rce

nta

ge o

f R

esp

on

de

nts

Age Categories

Diagnoses: Mental Health Conditions

Of the 319 responses, 14% of individuals with DS have a mental health

condition:

Of the 316+ responses, the following percentage of individuals with DS have additional neurodevelopmental conditions:

11% (8% confirmed and 3% suspected) have Autism Spectrum Disorder

4% (2% confirmed and 2% suspected) have Attention Deficit Disorder

2% (1% confirmed and 1% suspected) have Tourette’s syndrome

Diagnoses: Neurodevelopmental Conditions

Of the 217 responses, 60% of caregivers use online resources as a source of

information:

Facebook Groups 61

DSRF website 43 Alberta Association for community living 1

Canadian DS Society 35 Medical Publications 2

Google Search 27 e-magazines 2

Lower Mainland DS Society 13 YouTube 2

National DS Society 9 Wikipedia 3

General Blogs 8 Noahsdad.com 3

Edmonton DS Society 7 Fraser Valley DS Society 3

Family Support Institute 6 Simon Fraser Society

Special Olympics Canada 4 for Community living 4

Demographics: Online Resources

Section 4: Sleep/Wake Behaviours

BC 19% AB

36% ON 21%

Of the 316 responses, 22% of individuals with DS have a sleep disorder:

Sleep/Wake Behaviours: Sleep Diagnoses

n=227 n=55 n=29

Sleep/Wake Behaviours: Sleep Disordered Breathing

85% (226 individuals) with DS experience symptoms of sleep disordered breathing:

Mouth breathing Snoring during sleep

Restless sleep/a lot of movement during sleep Breathing pauses during sleep

Bedwetting during sleep Gasping during sleep

69% 64%

3. 36%

19% 18%

1. 2.

51% 4.

5. 6.

22% (71 individuals) with DS have a sleep disorder:

Vs.

Categorical diagnoses:

Descriptive Symptoms:

Confirmed sleep disordered breathing 66% Of these:

Of these:

Suspected sleep disordered breathing 20%

BC 16% AB

31% ON 17%

Categorical Diagnoses:


BC 86% AB

84% ON 81%



Sleep/Wake Behaviours: Insomnia

53% (141 individuals) with DS experience symptoms of insomnia:

Problems falling asleep Wakes up during the night

46% 23%

1. 2.


Vs.



Confirmed insomnia 3% Of these:

Of these:

Suspected insomnia 13%

BC 15% AB

22% ON 7%



BC 53% AB

56% ON 41%



Sleep/Wake Behaviours: Parasomnias

46% (123 individuals) with DS experience symptoms of parasomnias:


Vs.



Confirmed parasomnias 11% Of these:

Of these:

Suspected parasomnias 8%

Teeth Grinding Sleep Talking/Shouting

Nightmares Getting up Confused/Disoriented

Night Terrors Sleep Walking

46% 27%

3. 8%

5% 3%

1. 2.

12% 4.

5. 6.

BC 4% AB

2% ON 3%



BC 47% AB

44% ON 44%



“Waking up for a scheduled time is difficult, but on days when they can wake up on their own they wake up easily; even though the amount of sleep time is about the same.”

Sleep/Wake Behaviours: Mornings

Of the 267 responses, the level of difficulty, for individuals with DS, to get up in the morning is as follows:

Of the 267 responses, 29% of individuals with DS experience daytime

sleepiness.

Sleep/Wake Behaviours: Daytime Behaviours

[He] seems to get a good sleep, but when he does wake up in the night or has problems falling a sleep, he is not very good for school and regular activities. He is very tired by the end of the day & even too tired to eat dinner. Even on good days when he does gets a good sleep, by the end at school he is tired.”

“My child is used to interrupted sleep. My child does well during the day, but I suspect my child's focus and attention would increase with more restorative sleep.”

Of the 267 responses, 8% of individuals with DS experience daytime

hyperactivity.

What is the QoL of the individual with DS?

On a scale of 0 – 100, (low to high)

Would their QoL change with improved sleep?

What would their QoL change to with improved sleep? On a scale of 0 – 100, (low to high)

Sleep/Wake Behaviours: Quality of Life (QoL)

Yes 32% Average [stdv] 82 [±14]

min/max 24/100

Average [stdv] 88 [±12]

min/max 48/100

QoL of Individual with DS

“I wish we would have been able to do a sleep study years ago. Our daughter could sometimes groan for hours in the night. When she started groaning AND teeth grinding we got her a mouth guard which she loves to wear and it has helped a lot! So the quality of life values were a lot lower back then!!!”

Sleep/Wake Behaviours: Quality of Life (QoL)

What is the QoL of the primary caregiver?

On a scale of 0 – 100, (low to high)

Would their QoL change with improved sleep?

What would their QoL change to with improved sleep? On a scale of 0 – 100, (low to high)

Yes 29% Average [stdv] 80 [±16]

min/max 22/100

Average [stdv] 88 [±13]

min/max 50/100

QoL of Parent/Caregiver

“My son wakes up between 3 and 4 am most nights. Does go back to sleep. My quality of life would improve if this didn't happen as I don't always fall back to sleep.”

Section 5: Feedback & Testimonials

Survey Feedback

“Survey seemed more applicable to parents of older children with more experience, I was not sure how to answer some of the questions that didn't apply due to my child's young age - 'no' or 'I don't know’”

“You did not ask any questions regarding function of daily life such as household chores, ability to follow instructions, etc. I wonder why these were omitted.”

“You don't seem to have captured the age of the individuals to whom this survey pertains. At this point in time, my issues for my granddaughter relate to the aging of an adult with Down syndrome.

Words of Thanks from Participants

Thanks for having this survey, I think it's great and I hope I have been helpful. I

appreciate all the work put into it!! Thanks for working on this. I often

worry that research will dry up as fewer people with DS are born due to early detection testing. I

appreciate the time taken to develop this survey. I hope that it results in more and easier access to

required therapies (such as the Autism community receives), and that its not just another waste of time. thank

you. The survey seemed thorough and I appreciate the time and effort it took to

create a survey specific to Down Syndrome. Thank-you. Wonderful. Easy to do,

and the ability to save as I go is a godsend. I was interrupted countless times by my adorably curious kid. I would

not have finished it otherwise. What a good idea! Thanks for doing this survey. Thank you for putting this together and doing what you can to make life better for people with

Down syndrome and the families who care for them. Thank You, good luck. I hope you have MANY completed surveys to help show a true picture of the health issues of the DS population in BC. WE have to be the voice for them, since many cannot speak for

themselves. Great survey!!! Really excited to hear the results/compilations of what

other parents are saying - hope you send it out. Thank you very much for working toward coordinated care. I greatly appreciate your efforts for my family and many others!

62% (155 respondents) of caregivers of individuals diagnosed with DS would

use a “Down Syndrome app” which tracks symptoms and schedules for physician visits

69% (107 respondents) of caregivers were willing to participate in the

development of such an app

91% (141 respondents) of caregivers were interested in participating

in the testing of such an app once it has been developed

Feedback & Testimonials: App Development

Feedback & Testimonials: DS App Suggestions

1. Suggestions 2. Concerns 3. Future Development

Overview:


Medical History

Timeline

Personalized Calendar

Medications & Supplements

Resources

Communication


Medical History: tracking records

Medical History

Timeline



Resources

Communication

“Should be easy to look back and see when the child

had an appointment for something specific i.e. ENT, blood work, therapies, eye exam. This makes it easier to make future appointments & remember what has been done.”

“Keeping track of records and letting the caregiver know when specific tests are needed.”


Timeline: following development

Medical History

Timeline



Resources

Communication

“There are timeframes when certain ailments are likely to develop or be able to be assessed for (sleep apnea/dyslexia). A feature that alerts parents for what to look for if they are developing would be useful.”

“Common health concerns that are different, bathroom habits tracker, common contacts section, emergency health info section, adjusted growth charts specific to Down syndrome, message board option, links to services based on geography, scheduling tool.”


Personalized Calendar: keeping up with appointments

Medical History

Timeline



Resources

Communication

“I am overwhelmed with appointments and have had to find a balance in scheduling. Finding out how many appointments you can handle is key and making sure to not schedule beyond that. So a red flag when you've over scheduled. As well as reminders of upcoming appointments.”

“Make it customizable. My daughter has virtually no health issues, so an app that requires me to constantly bypass all scheduling possibilities to get to the select few I need would be discarded very quickly. An ability to set alarms, and/or send out email or text reminders about appointments would be appreciated.”


Medications & Supplements:

Medical History

Timeline



Resources

Communication

“List of all risk factors (checklist), when they should be tested, and by whom. Include a mechanism that would remind you to make appts, follow up, etc. Include an area to track medications, doses, and the chronology (e.g. ear infection in April '15 - Novamoxin 4 ml at 3 x day for 10 days).”

“Some way of tracking vitamins A,C,E,D, Zinc and Iron.”


Medical History

Timeline



Resources

Communication

“Common health problems, when supplements are helpful, where to access resources in your area, behaviour suggestions, that Autism is 5 times more likely.”

“Symptoms of sleep apnea, orthotics information & what to look for, reminders for eye & hearing testing and a list of referral doctors as GP may no know who to send you to. List of good referrals for all common problems in DS.”

“A resource link to things about diet, exercise and other developmental tools. Access to employment or volunteer activities for individuals with DS. Parent and teacher packages...”

Resources: links for health & wellness


Communication:

Medical History

Timeline



Resources

Communication

“Online doctors that can answer your questions, requisition blood work and regular tests and then get the results.”

“Access to medical/lab test results. A more open communication between all members of the team, family, health care, therapists, community supports. Links to helpful support or services. A checklist”


“I would not use an app for health management because I do not trust devices as a permanent method of information storage.”

“I don't think an app would help. Taking humans out of the picture is not my take on this. Educating the professionals on different diagnosis, and being familiar with local resources and at what capacity those resources can be of value would be the direction that in my opinion should be taken.”

DS App Concerns:

Feedback & Testimonials: Future Development

62% of caregivers of individuals diagnosed with DS would use a “Down

Syndrome app” which tracks symptoms and schedules for physician visits

69% of caregivers were willing to participate in the development of

such an app

91% of caregivers were interested in participating in the testing of

such an app once it has been developed

Feedback & Testimonials: App Development

Future Development: Life Trajectory Charts

Future Development: Medication Timeline

Future Development: Sleep Disordered Breathing Example Visualization

85% of individuals with DS experience symptoms of sleep disordered breathing:

Mouth breathing Snoring during sleep

Restless sleep/a lot of movement during sleep Breathing pauses during sleep

Bedwetting during sleep Gasping during sleep

69% 64%

3. 36%

19% 18%

1. 2.

51% 4.

5. 6.

22% of individuals with DS have a sleep disorder:

Vs.



Confirmed sleep disordered breathing 66% Of these:

Of these:

Suspected sleep disordered breathing 20%

Future Development: Sleep Logs/Diaries

Section 5: Feedback & Testimonials

Of the 287+ respondents, the following are the services being utilized:

Demographics: Services

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Service Currently

n (%)


Over 12 months ago

n (%)

Has never attended

n (%)


27 (9) 80 (27) 110 (37) 70 (23)



Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)



Psychologist 13 (5) 23 (8) 51 (18) 189 (66)


Daycare 69 (23) 11 (4) 102 (33) 118 (39)

Demographics: Parent Support Groups

Of the 192 responses, 53% of caregivers of individuals with DS are part of a

parent support group:

In-person community group 83%

Facebook group 56%

Of the 217 responses, 60% of caregivers use online resources as a source of

information:

Facebook Groups 61

DSRF website 43 Alberta Association for community living 1

Canadian DS Society 35 Medical Publications 2

Google Search 27 e-magazines 2

Lower Mainland DS Society 13 YouTube 2

National DS Society 9 Wikipedia 3

General Blogs 8 Noahsdad.com 3

Edmonton DS Society 7 Fraser Valley DS Society 3

Family Support Institute 6 Simon Fraser Society

Special Olympics Canada 4 for Community living 4

Demographics: Online Resources

Sad 47

Shocked 43

Scared 36 Emotional 7

Devastated 28 Hope 7

Worried 22 Disappointed 7

Overwhelmed 18 Unsure 7

Confused 17 Grief 7

Upset 16 Acceptance 9

Concern 13 Angry 10

Surprised 11 Love 10

Support 6

Heart Broken 6

Alone 6

Initial Diagnosis: Most Commonly used Descriptors

Of the 220 responses, the following descriptor were most commonly used:

Out of 222 comments:

6% Positive E.g. I recognized the features of Down syndrome when she was handed to me shortly after birth. I was thrilled to have a daughter, not upset about the DS. As the days wore on, the implications and worries grew, but we were decided to look for the positives not the negatives.

6% Neutral E.g. Accepted reality.

76% Negative E.g. Very sad and depressed, and full of disbelief at first, wondering how this could happen to me. This is something that happens to other people, not me- that's how I felt.

12% Mixed feelings E.g. I loved her for who she was but worried about coping with a child with so many issues which would continue throughout her life; worried about how the world would accept her.

Initial Diagnosis: Examples of Emotional States

Types of support (n=133) n (%)

1 Community Support 108 (81)

Focus Groups 31 (29)

Infant Development Program (IDP) 23 (21)

Informational 21 (19)

Community Centres and Organizations 21 (19)

Testimonials/Previous Exposure 13 (12)

Counselling 3 (3)

Other Programs 2 (2)

Initial Diagnosis: Support System

These are the means through which parents/caregivers of individuals with DS receive support:

Of the 220 responses, 57% of caregivers received enough support as a source

of information.

Initial Diagnosis: Support System


2 Family/Friends 60 (45)

3 Health Care Professionals 49 (37)

GP/Family Doctor/Paediatrician 18 (37)

Nurse 15 (31)

Geneticist 7 (14)

Mid wife 6 (12)

Social Worker 3 (6)

4 Religion/Faith 7 (5)

5 Bonding with newborn 5 (4)

These are the means through which parents/caregivers of individuals with DS receive support:

Initial Diagnosis: What was lacking?

Of the responses, 36% of caregivers felt a lack of support:

Lack of support (n=90) n (%)

1 Emotional support (e.g. compassion, empathy) 45 (50)

From healthcare professionals 23 (51)

Unspecified 22 (49)

2 Information regarding DS 42 (47)

From healthcare professionals 15 (36)

Unspecified 27 (64)

3 Support groups (e.g. contact with other parents who had children with DS) 18 (20)

4 Family and friends 6 (7)

Initial Diagnosis: What was lacking?


1 Poor presentation of diagnosis 13 (37)

Negative tone 8 (62)

Other concerns (e.g. Lack of resources, support, poor timing) 5 (38)

2 Lack of detailed knowledge on DS provided 6 (17)

3 Lack of additional support (e.g. counsellors, psychiatrist) 5 (14)

4 Inappropriate advice given 4 (11)

5 Concerns of parents dismissed 3 (9)

6 Out-dated information provided 2 (6)

Of the responses, 17% of caregivers felt a lack of support from health care

professionals:

:

Core Project Team Dr. Osman IpsirogluMs. Dawn … - Focus Group Discussion (Final) - June 5... ·...

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