Parent’s MD Respite Care Survey Results
                                by Rich Clingman (06/21/01)

(I have noticed that some graph bars are not the correct size. I.e.: A “58%” bar may be shorter than a “10%” bar. I’ll fix these at some point.)

The MD Respite Care Survey for parent with children of any form of muscular dystrophy was conducted from March, 2000 through June, 2001.

There were 73 responses to the survey, a summary of which is below. A graphical analysis of the results is also included.

 

These 73 families represent 83 children with MD, 79 boys and 4 girls.

These surveys indicate muscular dystrophy is also affecting 78 children who do not have MD themselves—the siblings of those with MD. That represents nearly a 1:1 impact.

Of these 73 families, 58 have one boy with MD, 10 have two boys with MD, 1 has three boys with MD, and 4 have one girl with MD. The ages cover each range from 0-3yo to 19+yo, with the majority in the 4-15yo range.

Duchenne Muscular Dystrophy (DMD) represents 64 or 87.67% of the cases reported, Becker (BMD): 1 case, plus 11 (15.07%) Other MDs. Three (4.11%) are also Developmentally Disabled.

 

The majority of children require assistance with dressing (71.23%) and toileting (69.86%). One-third (32.88%) require assistance with feeding, while 4 (5.48%) utilize a GI Tube for feeding.

Nearly half (46.58%) use an electric wheelchair and 19.18% use a manual wheelchair. Eighteen families reported their MD kids use braces or a walker. I believe an even larger number utilize “night splints”, but this was not an option in this survey.

The need for breathing assistance through the use of a ventilator was reported by 8 families (10.96%).

Almost half (43.84%) of the families reported their MD kids require oral medications. None reported the need for shots or IVs.

 

Both In-home and Out-of-home respite care was desired by 57 (78.18%) of families. Hospice-level respite care (with skilled nursing) was desired by 18 (24.66%) of families.

Of the families responding, only 8 (10.96%) knew any agency that provided free or low-cost respite care for children with MD. Of these, several reported services available outside the US. That leaves 65 (89.04%) who are aware of no such services.

The vast majority of families (93.15%) indicated their insurance company would not pay for respite care, or they were unsure. The services would need to cost $20/night or less according to 55 (75.34%) or those responding.

Having respite care available is “long overdue” or “a great thing” according to 65 (89.04%) families.

Nearly two-thirds (65.75%) indicated they currently use no respite care. Volunteer respite care (where training could be provided for the caregiver) was appealing to 55 (75.34%), and 59 (80.73%) would or might participate in co-op respite care, exchanging one weekend/mo with another family.

Of the respondents, 7 (9.59%) indicated they are outside the US, while another 7 (9.59%) gave no indication of their location.

 

Parent’s MD Respite Care Survey Results

 

 

 

Tallied Responses

 

 

73 Responses Reported

Count

Percent

Graph

 

 

1. Who are you?

 

 

Parent of MD Child(ren)

73

100.00%

 

 

Parent of Deceased MD Child(ren)

0

0.00%

 

 

 

Child or Adult with MD: STOP! Use survey link above.

0

0.00%

 

 

 

MD-Related Professional: STOP! Use survey link above.

0

0.00%

 

 

 

Other: STOP! Use survey link above.

0

0.00%

 

 

 

No Response

0

0.00%

 

 

 

2. How many children do you have with muscular dystrophy (MD)?

 

 

None

0

0.00%

 

 

 

1

62

84.93%

 

 

2

10

13.70%

 

 

3

1

1.37%

 

 

More

0

0.00%

 

 

 

No Response

0

0.00%

 

 

 

3. How many BOYS do you have with MD?

 

 

None

4

5.48%

 

 

1

58

79.45%

 

 

2

10

13.70%

 

 

3

1

1.37%

 

 

More

0

0.00%

 

 

 

No Response

0

0.00%

 

 

 

4. How many GIRLS do you have with MD?

 

 

None

68

93.15%

 

 

1

4

5.48%

 

 

2

0

0.00%

 

 

 

3

0

0.00%

 

 

 

More

0

0.00%

 

 

 

No Response

1

1.37%

 

 

5. How many NON-MD children?

 

 

None

22

30.14%

 

 

1

29

39.73%

 

 

2

15

20.55%

 

 

3

5

6.85%

 

 

More

1

1.37%

 

 

No Response

1

1.37%

 

 

6. What age(s) are your MD children?

 

 

0-3 years old

5

6.85%

 

 

4-6 years old

15

20.55%

 

 

7-9 years old

10

13.70%

 

 

10-12 years old

16

21.92%

 

 

13-15 years old

23

31.51%

 

 

16-18 years old

8

10.96%

 

 

19+ years old

7

9.59%

 

 

No Response

0

0.00%

 

 

 

7. Which MDs?

 

 

Duchenne MD

64

87.67%

 

 

Becker MD

1

1.37%

 

 

Also Developmentally-Disabled

3

4.11%

 

 

Other

11

15.07%

 

 

No Response

0

0.00%

 

 

8. Status & Level of Care Required:

 

Braces

14

19.18%

 

Walker

4

5.48%

 

Manual Wheelchair

14

19.18%

 

Electric Wheelchair

34

46.58%

 

Respirator/Ventilator

8

10.96%

 

Medications (Oral or Topical)

32

43.84%

 

Shots/IVs/Finger-pricks Required

0

0.00%

 

 

GI Tube Feeding

4

5.48%

 

Dressing Assistance

52

71.23%

 

Toileting Assistance

51

69.86%

 

Feeding Assistance

24

32.88%

 

Respirator Mgt/Suctioning

7

9.59%

 

Other

19

26.03%

 

No Response

3

4.11%

 

9. When would you like IN-HOME respite (MD-skilled 'baby-sitter')?

 

None

10

13.70%

 

Day-Time

19

26.03%

 

Evenings

35

47.95%

 

Over-Night

20

27.40%

 

Weekend

32

43.84%

 

Other

15

20.55%

 

No Response

1

1.37%

 

10. When would you like OUT-OF-HOME respite (to trained family, group activities, camp, etc.)?

 

 

None

21

28.77%

 

 

Day-Time

16

21.92%

 

 

Evenings

6

8.22%

 

 

Over-Night

9

12.33%

 

 

Weekend

27

36.99%

 

 

Other

14

19.18%

 

 

No Response

2

2.74%

 

 

11. When would you like HOSPICE-LEVEL care (w/ skilled nursing)?

 

 

None

43

58.90%

 

 

Day-Time

8

10.96%

 

 

Evenings

7

9.59%

 

 

Over-Night

9

12.33%

 

 

Weekend

9

12.33%

 

 

Other

6

8.22%

 

 

No Response

6

8.22%

 

 

12. Do you know of any agency in the U.S. which provides free/low-cost respite care for MD kids?

 

 

No

64

87.67%

 

 

Yes (Name/Phone)

8

10.96%

 

 

No Response

1

1.37%

 

 

13. Have your children attended an MDA or other camp?

 

 

Yes

40

54.79%

 

 

No

31

42.47%

 

 

No Response

2

2.74%

 

 

14. How did it go?

 

 

N/A

26

35.62%

 

 

Great

25

34.25%

 

 

Okay

8

10.96%

 

 

Blaa

7

9.59%

 

 

No Response

7

9.59%

 

 

15. How does your child(ren) react to new situations (i.e.: respite care)?

 

 

Adventurous-Enjoys New Experiences

16

21.92%

 

 

Cautious-Opens Up Slowly

39

53.42%

 

 

Reluctant-Will Need Convincing

11

15.07%

 

 

Frightful/Resentful

3

4.11%

 

 

No Response

4

5.48%

 

 

16. Would you be interested in free/low-cost MONTHLY weekend camps?

 

 

Yes

49

67.12%

 

 

No

20

27.40%

 

 

Already participate with

2

2.74%

 

 

No Response

2

2.74%

 

 

17. Would you be interested in free/low-cost daytime outings for your kids (baseball games, etc.)?

 

 

Yes

61

83.56%

 

 

No

8

10.96%

 

 

Already participate with

1

1.37%

 

 

No Response

3

4.11%

 

 

18. Who do you currently use for respite care?

 

 

No respite care used

45

61.64%

 

 

Friend, Family or Other

21

28.77%

 

 

Respite Service (name, phone)

5

6.85%

 

 

No Response

3

4.11%

 

 

19. Does your child(ren)'s health insurance cover respite care costs?

 

 

No

26

35.62%

 

 

Not Sure

38

52.05%

 

 

Skilled-Nursing Care

5

6.85%

 

 

Non-Skilled Care

1

1.37%

 

 

Insurance Company:

6

8.22%

 

 

No Response

4

5.48%

 

 

20. What would be an affordable cost if we cannot provide respite for free?

 

 

Would need to be free

13

17.81%

 

 

$10/night

23

31.51%

 

 

$20/night

19

26.03%

 

 

$30/night

9

12.33%

 

 

Other:

4

5.48%

 

 

No Response

5

6.85%

 

 

21. How important is this type of service to you or other MD families?

 

 

Long Overdue

25

34.25%

 

 

A great thing

40

54.79%

 

 

It'd be okay

6

8.22%

 

 

Probably wouldn't use it

0

0.00%

 

 

 

A waste of time and energy

0

0.00%

 

 

 

No Response

2

2.74%

 

 

22. Volunteer Respite: If we provide training & support, who could you find to help with respite?

 

 

Not Interested In Volunteer Respite

13

17.81%

 

 

Family Members

30

41.10%

 

 

Friends & Neighbors

26

35.62%

 

 

Church Members

13

17.81%

 

 

Other

15

20.55%

 

 

No Response

5

6.85%

 

 

23. Would you participate in Co-Op Respite (trade 1 weekend/month with another local MD family)?

 

 

Yes

27

36.99%

 

 

No

12

16.44%

 

 

Maybe

32

43.84%

 

 

No Response

2

2.74%

 

 

24. Grant providers will want the following: How would you classify your family's ethnic background?

 

 

Decline To Answer

1

1.37%

 

 

Caucasian, Non-Hispanic

59

80.82%

 

 

Hispanic

0

0.00%

 

 

 

African-American

0

0.00%

 

 

 

American Indian

0

0.00%

 

 

 

Asian/Pacific Islander

3

4.11%

 

 

Other

8

10.96%

 

 

No Response

2

2.74%

 

 

25. What is your family's primary language?

 

 

English

68

93.15%

 

 

Other

3

4.11%

 

 

No Response

2

2.74%

 

 

26. Contact Info (City, State, Zip needed. The rest is requested but optional):

 

 

Your Name

58

79.45%

 

 

Address

47

64.38%

 

 

City

68

93.15%

 

 

State

69

94.52%

 

 

Zip

65

89.04%

 

 

Phone

33

45.21%

 

 

Fax

13

17.81%

 

 

Email

55

75.34%

 

 

Pager/Other (specify)

5

6.85%

 

 

No Response

2

2.74%

 

 

27. In which geographic area are you located?

 

 

San Diego County

0

0.00%

 

 

 

Southern California

1

1.37%

 

 

West Coast Time Zone

3

4.11%

 

 

Mountain Time Zone

1

1.37%

 

 

Central Time Zone

24

32.88%

 

 

Eastern Time Zone

30

41.10%

 

 

Hawaii, Alaska, Guam, PR, VI

0

0.00%

 

 

 

Other:

7

9.59%

 

 

No Response

7

9.59%

 

 

28. Please use this space for comments, contacts, funding sources and ideas.

 

 

Comments

19

26.03%

 

 

No Response

54

73.97%

 

 

 

 

 

 


This article is from Living For Today, Preparing For Tomorrow. From Parents. To Parents. A Parent's Guide to Living with Duchenne Muscular Dystrophy

This book is dedicated to the parents and guardians who battle against their worries, who must prepare for tomorrow and yet grab hold of today, striving to make today the best day for their children and family.

 "Do not worry about tomorrow for tomorrow will worry about itself.
Each day has enough trouble of its own."     MATTHEW 6:34 NIV

© Copyright 2001-2002, Rich Clingman, All Rights Reserved - www.LivingForToday.org/copyright.htm
· www.LivingForToday.org · www.LivingForToday.org

This article may be freely copied and distributed by print or email provided it is copied and distributed in its entirety (including this Dedication & Copyright notice) and is distributed at no cost. Any other use (including publishing on the web) is prohibited without prior written authorization.

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